May 09, 2013

Levoxyl Shortage for Thyroid Patients

I recently tried to refill my prescription for Levoxyl and learned I cannot due to a recall by the manufacturer Pfizer.  I called Pfizer this morning and spoke to a robotic, though pleasant, customer service representative in India.  She provided little useful information.  Between my own research on the FDA and American Thyroid Association websites I learned the following:

 

* Pfizer has suspended production of Levoxyl, which is manufactured at a plant in Tennessee.  Chemical contamination is the reason for suspended production.  Emission of a strong odor was reported by pharmacists when opening 100 and 1000 tablet bottles of the product. 

* Patients do not need to discard or return Levoxyl that they already have.

* The recall was initiated on March 28, 2013 and Levoxyl may not be available again until 2014. 

* This recall impacts all strengths of Levoxyl.

* Pfizer cannot advise you on substitutes.  You should contact your doctor to create a game plan for alternative medication you can take during the shortage.

 

As a young adult thyroid cancer patient, each morning I pop a Levoxyl 137 mcg.  This  tiny blue thyroid-shaped pill is a big part of my healthcare routine.  I had a total thyroidectomy as a result of my papillary carcinoma, and because I have no thyroid gland to produce the hormone thyroxine, my blue Levoxyl pill is a substitute.  Thyroxine regulates cellular metabolism, which in turn controls functions such as my body temperature, heart rate, fat metabolism, brain metabolism, vitamin absorption, and much more.  My stellar doc at Memorial Sloan Kettering makes sure I take a slightly high dose of levoxyl, enough to make me hyperthyroid.  This causes a see-saw effect and lowers my thyroid stimulating hormone – TSH.  The thinking is suppressing my TSH will suppress the growth of any stray cancer cells.  What a beautiful idea.

I was shocked to learn about the Pfizer recall.  There are substitutes for the Pfizer patented Levoxyl, such as the generic Levothyroxine, or the drug Synthroid, manufactured by Abbott.  I have had side effects from each of these drugs in the past, but they are my only choice for now. (Look for an upcoming post on why I choose not to take ArmourThyroid, which is dessicated animal hormone.)

Due to the Pfizer shortage of Levoxyl, I started taking generic Levothyroxine two weeks ago and have begun to experience heart palpitations.  They feel like an intense fluttering in my chest, as though a rebellious caged butterfly is stuck inside my ribs violently struggling to get free.  They have occurred when I am driving but pass after a few minutes.  From prior experience on this drug, I know to just breathe deeply and stay calm. But I do think it is time to call my doctor back and discuss my options.

I am not a doctor. I am just one patient.  My experiences may not be typical or representative of what others experience. Do your homework, communicate with your doctor, and take charge of your own health care decisions.

Stay tuned as I will continue to post updates on the levoxyl shortage.  If you wish to receive emails of my updates, scroll down on the right side of this page and click on the navy blue bar that says “Get blog posts in your inbox.”

For more information about young adult cancer and chronic illness, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

For more conversation on thyroid medication, read my post How To Adjust To Thyroid Medication?

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Comment(s)

  1. Xena Says:
    May 9th, 2013 at 2:54 PM

    Hi Kairol! I am on Armour and feeling better but not exactly returned to normal and so I’m very much looking forward to reading your post on why you don’t use Armour. I read your book and get updates about you from Jana. Hope you are doing well. Look me up if you are ever in Seattle.


  2. kiki Says:
    May 9th, 2013 at 8:31 PM

    I woul sstrongly encourage you to consider switching to a dessicated med like Armour or Nature Thyroid. Does your doctor test free T3?

    I think it’s borderline negligent for doctors to put someone with no thyroid on a T4-only med.


  3. Debbie Says:
    May 13th, 2013 at 8:53 PM

    Hello, I just received a phone call from my doctor today telling me about levoxyl. I have been taking that and Amour thyroid since the mid nineties. Together they have kept me balanced. I share your concern with the shortage issue. What about the Armour? I have been on it forever.


  4. Anonymous Says:
    May 14th, 2013 at 1:02 AM

    I just found out earlier today about the shortage when I went to refill my prescription. I didn’t want to leave the drugstore empty-handed since I only had one little Levoxyl pill left at home and new I wouldn’t be able to get a doctor’s appointment in one day. That said, I’m very anxious about changing medications since I’ve been taking Levoxyl since I had my thyroidectomy back in 2005. And from what I hear, Levoxyl isn’t coming back until 2014, so this isn’t just a short-term thing. I made an appointment with a new endocrinologist today(I haven’t really needed one lately and put off finding a new one since moving to L.A. from NYC in 2011), but I think I’ll call him back tomorrow and see if I can get some advice over the phone to hold me over until my appointment in June. Ugh. So frustrating!


  5. jane Says:
    May 14th, 2013 at 10:33 PM

    you might want to try tirosint. look it up. i haven’t started it yet since i had some extra levoxyl leftover, but it is what my pharmacist and doctor recommended and is not generic.
    best wishes to you.


  6. anonymous Says:
    May 15th, 2013 at 10:38 PM

    I have been taking Levoxyl for the past 18 years, last saturday went to have a refill and was told the same thing.
    I am taking Levothyroxine, since yesterday, today I felt terrible, heart palpitations, irritable and anxious.
    My doctor says isthe same thing, I don’t believe it. Is there an alternative?


  7. SKLY Says:
    May 21st, 2013 at 7:02 AM

    3 days on Synthroid. So far, I don’t feel any different but my dose is 163mg. I take an 88mg and a 75mg pill. Time will tell.


  8. NMS Says:
    May 24th, 2013 at 10:45 AM

    I was on Levoxyl 150 mg for 6 years and same thing a surprise replacement from my prescription provider to Synthroid. No call ahead that there was a changeand of course, as I tried Synthroid before I didn’t want to chance. It gives me a constant numbing headache. My doctor lowered the dose and said to try it for 2 months…unfortunately, I am not feeling right…feel anxious, nervous, very tired.


  9. Sari Says:
    May 25th, 2013 at 8:26 AM

    I read that there was a ‘potency’ problem with the Pfizer Levoxyl. Maybe you are feeling the heart palpatations because you are now getting a stronger potency with the new pill. Maybe now you will need a slightly lower dose.


  10. Enchanted Seashells Says:
    May 25th, 2013 at 11:03 AM

    So, does that mean that I was never getting the appropriate level from Levoxyl? I’ve been taking it for years, only 50 mcg but the first day I switched to synthroid I experienced all the same HYPER thyroid feelings everyone is talking about. Heart beating so fast, fluttery, even elevated blood pressure, I felt like I had about 50,000 cups of coffee. The doc did a blood test, said I could stop taking them altogether until the results came back, but I cut it in half and tried that today. It’s a horrible feeling, I agree! I’m a vegetarian so I would never take anything derived from an animal.


  11. Anonymous Says:
    May 25th, 2013 at 1:34 PM

    That might explain why I’ve actually been feeling better on the generic Levothyroxine than the Levoxyl I took for years. Which was kind of a shock cause I thought I would feel awful. Maybe I was hypo and now I’m getting the right level. Although I had labs done when I was on the Levoxyl and they seemed normal. I HAD been feeling some hypo symptoms though, especially fatigue.
    I read something somewhere about how the FDA was going to change its guidelines a few years ago to make the requirements for generic stricter. Anyone know if that actually ever happened? I just hope that there’s some consistency to this drug. Don’t want to go get my refill in a month and find myself in a whole different situation. If it stays this good, I’ll never go back to Levoxyl, that’s for sure. Especially after having been burned once now.


  12. vicky Says:
    May 28th, 2013 at 8:28 AM

    I had Grave’s disease with my thyroid had radiation and took 4 years to balance out. found good dr. I have been on levoxyl 250mcg for a long time. Was shocked to hear no levoxylt till next year.I was reading the post and i have to say , after i swithced medicines that my symptoms have become worse. i feel i am not getting enough even though i am on the same dose 150mcg. i feel more tired losing hair more gaining weight. I miss my levoxyl! I am going to dr. to see what other options are out there . leveothyroxine is not cutting it.


  13. vicky Says:
    May 28th, 2013 at 8:29 AM

    sorry typeo i am on 150mcg :)


  14. NMS Says:
    May 28th, 2013 at 2:53 PM

    @ Sari, my doctor lowered my dose to 137 mcg on the Sythroid about 2 weeks ago for that reason..Synthroid gives a higher potency. So much for all the line I get ‘they are ALL the same…” This is what fustrates me the most — how can regulators & doctors allow this to happen? Each drug needs to be evaluated for each case and individual. Finding the right ‘cocktail’ is important to managing a thyroid condition. And it takes such a long time to get back on track. I think Thyroid conditions are completely underestimated for their complexity and affect on people.


  15. anonymous Says:
    May 30th, 2013 at 11:42 AM

    When I read this it sounded like I had written it myself. I thought I was alone in feeling this way when on Levothyroxine years ago. I had heard that the dose in the generic form wasn’t always the same. I remember driving to work and having that “feeling”. Almost like an anxiety attack. I remembered that breathing carefully helped. Now I have to try this drug again???? I cannot tell you how upset I am.


  16. Andrea Says:
    June 2nd, 2013 at 9:51 AM

    :( I was hoping to get at least one more Levoxyl refill before the shortage affected me. Time to call the doctor tomorrow morning to figure out the alternative. Damn.


  17. Anonymous Says:
    June 3rd, 2013 at 11:58 PM

    Another reason to avoid Armour or Nature thyroid if you’re a thyroid cancer patient is they may contain traces of thyroglobulin- which may influence your blood tests when they’re checking your thyroglobulin levels.


  18. Enchanted Seashells Says:
    June 4th, 2013 at 12:09 AM

    I’m a vegetarian so I can’t take the Armour, I’ve gone cold turkey but I feel horrible! headache, bones ache, very tired, sweaty but at least the racing heartbeat and speedy feeling is gone. I talked to a compounding pharmacist who thinks I may have had a bad reaction to some fillers in the Synthroid. He said he can make a purer levothryroxine without aluminum and any bad stuff so I might try it. I will NEVER take that Synthroid again.


  19. Priscilla Says:
    June 4th, 2013 at 6:28 PM

    I recently read the manufacture of Armour is stopping also. I think I read it in Mary Shannon’s newsletter. After 2 weeks I am losing hair and getting intense leg cramps. I think my heart might be in trouble. This is just outrageous.


  20. Anonymous Says:
    June 4th, 2013 at 11:29 PM

    Sounds like many of you are having hypo or hyper symptoms. Could be because of the inconsistencies in dosage from one brand to another, not just the change in brands. Make sure that 4-6 weeks after switching brands that you’re getting your levels checked. I know that isn’t much consolation, seeing as even if you find that your numbers are off, it’ll take time to find the right dosage and get balanced again. And sometimes, even if your numbers are fine, you feel like crap. Don’t know how that happens, but I know from experience, unfortunately, that it does. I’ve got my fingers crossed that I’ll continue to be okay on my generic, since I’ve only been on it a few weeks now. And that when I refill my prescription it’ll be consistent with the dosage I’ve been getting this time around.


  21. Rose Says:
    June 5th, 2013 at 12:09 PM

    Levoxyl is the best of the thyroid medications without or little side effects. Synthroid is bad stuff, don’t ignor your symptems because they are telling you something. LISTEN to your body, everybody is having the same problems with this other stuff. Leveothyroxine is the same as Synthroid, that is why you are having the same negetive symptems with it. Strange that the only thyroid medication that works is misteriously taken off the market without notice – isn’t it? Kinda like the IRS situation don’t you think. Do know that Armor Thyroid did not work either. Is it that they want us all to go to the doctor and make them rich trying to find the answer, and try the other thyroid medications to make them rich only to go back to Leveoxyl because the manufactorer knows what they are doing and IT WORKS!!!!! I suggest we stand together in protest and demand answers as to why we were not told of any problem with Levoxyl (a mell?? but what about that it works!), and why we were left with stuff that does not work and causes multipal negetive side effects; and what about the cancer patience and those on Levoxyl for many years, what about them !!!!


  22. Judy Says:
    June 8th, 2013 at 9:51 PM

    I have been on levoxyl since 2001 when I had my thyroid removed due to cancer. After surgery the doctor put me on Synthroid which. Had complications from. I tried the generic Levoxyl which also did not do the job. I agree that there should be some standards pit in place for this important drug that so many of us have to take. I just don’t know which to switch to next. I look forward to more comments and updates. Good luck to us!


  23. Anonymous Says:
    June 9th, 2013 at 2:11 AM

    I just went to see my new endocrinologist and he explained to me that some people don’t convert T4 to T3 very well and since Levothyroxine (generic, Synthroid and Levoxyl) is only T4, people who don’t do well on those drugs can sometimes benefit from adding T3 to the mix. He even said that this is even true if your numbers are normal, because they don’t always accurately reflect this conversion. Have you tried adding T3? Just a thought. I know there are so many factors at play that it’s really hard to pinpoint what’s not working. Hope you find something that works for you.


  24. wanda Says:
    June 9th, 2013 at 4:26 PM

    I too found out about 10 days ago that my usual Levoxyl was no longer available. After only 3 days on Levothyroxine, I felt extremely tired, sleepy and just generally not wanting to do anything that I didn’t have to. The first day I noticed symptoms, I was at the gym. I managed to stay on the treadmill for 30 minutes doing a 16 minute mile. Strangly, my heart rate never rose above 63 bpm. Normally it would have been up around 85 to 95 bpm which is fairly normal during exercise. This weekend I had a very hard time getting out of bed at 9:30 instead of my usual 7:30am. With all the medical technology that we have; millions of people having to readjust their lives to some other medication that isn’t working well seems really ridiculous. I guess it’s back to the drawing board to look for alternatives.


  25. kat Says:
    June 9th, 2013 at 9:55 PM

    I have been on levoxyl since 2001 after many years of having a terrible time finding the right thyroid medicine. Levoxyl worked perfect. My health situation is compounded with diabetes and surviving cervical cancer five times. Now this with my thyroid medicine. It just does not make sense to make the drug unavailable for that long because the containers were contaminated. Financially it just does not make sense. Also, I cannot take synthroid. Let’s pull together and write to the FDA and persist eith Pfizer. I have some contacts in the political arena. It just is not fair to put us through this.


  26. Anonymous Says:
    June 9th, 2013 at 10:34 PM

    If you’re serious about taking action, I’ve found that Change.org’s website has been very successful with its petitions.
    http://www.change.org/
    I’m sure there are lots of people out there who would sign it! I would!


  27. Leslie Says:
    June 10th, 2013 at 1:04 PM

    As several of you have stated, I was not notified of an impending Levoxyl shortgage–knew nothing about it until I opened my Levoxyl bottle two weeks ago to find the bottle said Synthroid. I had a long and profoundly difficult time adjusting to thyroid replacement therapy, which included the use of Synthroid, Armour, various generic brands of levothyroxine, beta blockers, pain relievers, antipsychotics, and attention-deficit disorder medications. Now, I’m only able to coherently write that I wish to pull together and persist with Pfizer, the FDA, and any other pertinent organizations and/or compassionate medical professionals. (I’ve spent close to 2 hours writing and rewriting this post, because of heavy confusion and weakness.) Took Synthroid for 5 or 6 days, called my endo (actually my endo’s nurse) b/c of Synthroid side effects which began several days after starting it and was switched to Triosint last Wednesday. Received no call back Friday from the endo’s office regarding Triosint’s negative effects, and went back to taking Synthroid Sunday a.m. Hit my head on the edge of a locker at the YMCA that afternoon–was trying to keep up with my regular routine but have had increasing balance problems, increased pain, weakness, depression, confusion, and anxiety (combination hypo/hyper I assume) since I’ve been off Levoxyl. I was able to be my own advocate in the past, but am not sure it’s possible now. My husband has Stage IV COPD and my attention to him and ability to care for him has diminished also. Thank you, Kat and everyone else, for sharing your symptoms, experiences, disgust, frustration, hope, suggestions, positive attitudes, and dedication to try for a solution to this common problem.


  28. Joyce Says:
    June 10th, 2013 at 2:54 PM

    Was not notified it had been recalled until I went to get prescription refilled. Luckily I was able to find a pharmacy that still some and had not been recalled. But when I needed a refill their Levoxyl had been recalled. So have bee using Levoxthrin. Have tried that before and Synthroid. That was even worse. Levoxthrin gives me very bad gastric indigestion. I cannot take any medication for indigestion (acid) as I am allergic to it all. The pharmacist told me not to take any of it as my systems to those indigestion meds were a sign of a high allergy. All those types made my legs numb. Need Levoxyl back soon. It worked well. Right now my insides feel very inflamed and sore from all the acid indigestion. Even watching my foods helps very little.


  29. Evie Says:
    June 10th, 2013 at 4:27 PM

    Have been on Levoxyl 150mcg for 10 years or so. Went to fill my prescription last week and was denied. The shortage and some problem with my medical clinic’s new fax system left me with no thyroid replacement med for some days, and this while I was facing the dreaded colonoscopy prep in just days. I had some kind of problem years ago with the generic levothyroxine, but couldn’t recall what, so since my insurance will only okay the generic for now I figured it was my only option. Now 32 hours prior to a colonscopy and having to strip my bowel with that noxious Golytely gallon of laxative, I’ve been having soreness, nausea, gas and cramps in my bowel after just two doses of these generics, and before I’ve even started to drink the yucky prep stuff. The fillers in this pill include lactose (I don’t drink milk because of digestion problems) and aluminum (Hellloo?) etc. etc. Sure, I’d love to take the new one without all that, but insurance companies won’t allow it. Is the hassle and begging to get coupons and “special dispensation” worth it at my age? I feel it was negligent of the drug company, pharmacies and Doctors to not notify consumers of any impending lack of such essential products and services. As an oldster I can attest that these days a patient is too often just another file in the stack on the desk in the back office. We shall all just ‘soldier” on….


  30. Dnadragonfly Says:
    June 11th, 2013 at 11:48 AM

    Luckily, I have refilled my prescription early for the last few years and have about a 5 months supply ahead of levoxyl. I used to be on armour and later naturethroid, but there reformulation caused me to have a fast irregular heart rate. Switched to levoxyl and Cytomel and finally after 2 years I’m feeling ok. Now, I’m worried about what happens when my levoxyl runs out. I do not have enough until April of 2014. It’s not right that these drug companies can do this to us. Wonder who we can all write to.


  31. Enchanted Seashells Says:
    June 11th, 2013 at 1:55 PM

    Can anyone give me a review of cytomel for T3? I wonder why my doc hasn’t added that too.


  32. Bonnie Says:
    June 11th, 2013 at 4:32 PM

    I have been on Levoxyl for 10 years. Like building blocks of a strong foundation I had my dose balanced over time and I felt WELL. I really, really miss that well feeling I had about 2 months ago before they recalled the medicine. That medication was my lifeline to wellness and now I never feel well. I want Levoxyl back so badly I wish a stock bottle would fall from the sky so I can be myself again. I have been thinking of every angle and tearfully praying about the return of this medication before I loose my mind or my total health because I am really struggling. At age 58 this has been a hard blow on my body.

    I am with Joyce when it comes to taking the generic levothroxine and feeling inflamed all over with continuous heartburn. I am very allergic to every medicine that’s been given to me to try since April 2013. Horrible side effects where I’m concerned. Thrush on my tongue, rashes coming up everywhere with some hives, racing heart, high pulse and higher blood pressure (which was normal before). Insomnia and dry heaves are a daily, nightly issue for feeling pumped up and so allergic to these other thyroid medications.
    Cannot tolerate Synthroid or Tiersen or Unithroid (this one was a real disaster).

    I haven’t had coffee in the mornings or any Sprite, just water to drink because of all the anxiety and dry mouth issues involved with all the adverse effects from the medications. Other adverse effects I worry about that involve rib tightness, stiff joints and the list goes on. :(. I’ve also lost 7 lbs from this (weigh 105 from 112). Can’t afford to keep loosing but can’t eat really well to satisfaction either without feeling sick at some point.

    I am to pick up Levothroid tomorrow and at this point I am scared to death to try it. My TSH is the only thing out of balance. Was 2.5 on Levoxyl then it went to 14 within a month after all this medication changing began. This has all been a nightmare for me personally and only want to feel normal again. We need the medication that makes us feel well back in the pharmacies again.


  33. kat Says:
    June 12th, 2013 at 10:07 PM

    AGAIN, THE TIME ELEMENT OF TAKING LEVOXYL OFF THE MARKET FOR THAT LONG JUST DOES NOT MAKE A NY SENSE. iS IT THE fda, pFIZER OR BOTH? iF WE ALL BAN TOGETHER AND KEEP COMPLAINING THEERE HAS TO BE SOME TYPE OF RESPONSE EXCEPT INDIFFERENCE AND LIES. DOES IT REALLY TAKE ONE YEAR TO RE-DESIGN NEW CONTAINERS?


  34. Kim Says:
    June 13th, 2013 at 7:22 AM

    Hi Kat! How should we go @ banding together?


  35. Pamela Says:
    June 13th, 2013 at 10:13 AM

    I am so happy to find this article and responses. I have been adamant for years with pharmacies and doctors that I take Levoxyl because it’s the only Thyroid replacement that works for me. Now I know I’m not crazy. The last week has been very difficult. I have had heart flutters, losing hair, extreme weight gain, and exhaustion. I thought it was from the accident I was in a few months ago. But this morning it dawned on me that it might be from the synthetic Levoxyl I am taking. I just don’t feel like it’s working. I put a call into the doctor immediately. Thank you all for your posts.


  36. Mr. B Says:
    June 13th, 2013 at 2:41 PM

    Just wanted to add myself to the list of folks taking Levoxyl who can’t take anything else. Tried a generic last year and among other problems, tinnitus started in my left ear and never ceased. Synthroid gave me palpitations, which I consider very serious since I’m 49 and my father died at 50 of a heart attack. I guess that I will just stop taking anything until they make Levoxyl again. Hey, maybe my hair will get thick again!


  37. kat Says:
    June 13th, 2013 at 9:49 PM

    I think if we all continue to e-mail the FDA and Pfizer and do it in mass numbers we have to get their attention. I just lost my father in February and with all my endocrine issues and cancer I cannot go through that terrible cycle of experimenting. If levoxyl works why can’t we have it back by July? Again, are designing new containers the real issue? I will write tomorrow after e-mailing the company and FDA.


  38. Fred Says:
    June 15th, 2013 at 6:45 PM

    Reading the comments from Levoxyl users shows that the physicians who are prescribing
    Thyroid medications are either misinformed or are not conveying to their patients that hormones are subjec to bioavailability and that generics do not represent equivalency.
    So the strategy is to find out what dosage works rather than rely on mg equivalency..
    Synthroid probably is more bio available than Levoxyl so 75 might equal 100….Ask your physician to step down and test levels of T4 and T3 as well as evaluate clinical response and side effects……this is an important hormone and needs careful monitoring


  39. kat Says:
    June 15th, 2013 at 10:02 PM

    Did anyone read that there was a second recall of levoxyl because of “potency” problem? The toll-free number for the FDA is 1-855-543-3784. All of the years before Pfizer bought King’s everything was okay. Has anyone tried the Mylan levothyroxine? Whatever you are stating about Synthroid (Fred) is of little value to me because it does not work for me. I ended up in Cleveland Clinic in the 1970′s to have them make that discovery. As I stated before I am not willing to live that nightmare again. Thanks to all of you for making me feel that I am not the only “freak” affected by this levoxyl dilemna.

  40. Kairol Rosenthal
    Kairol Rosenthal Says:
    June 16th, 2013 at 1:52 AM

    Hi Everyone,

    Thanks for your ongoing comments. I have been researching the recent history of King, Pfizer, levoxyl production, and the FDA. I will try to get a post up on Tuesday that includes this information, likely followed by a post later in the week on tips for managing the switch from levoxyl to a new thyroid medication. Hopefully you can all contribute useful comments to those posts so we can benefit from one another’s experiences.

    Kairol


  41. Pam Says:
    June 16th, 2013 at 7:22 AM

    I am very upset about the levoxyl situation and my doctor prescribed levoxathyrine which I refuse to take due to the WARNING about adrenal insufficiency along with other warnings which apply to me. I could end up in a serious situation and wonder why she didn’t consider that. Waiting for a response and change as I still have 6 Levoxyl pills left. It’s scary! Our lives will be changed due to Physer’s choice and not for the better!!! Hoping they take action to get Lexoxyl out to patients before 2014.


  42. Anonymous Says:
    June 16th, 2013 at 3:49 PM

    So, four weeks of feeling okay and the other shoe finally drops. I started feeling bad last night, a little indigestion, frequent bowel movements (sorry, TMI), anxiety, and then I couldn’t get to sleep (which is very rare for me). I finally got about two hours of sleep in the morning, but now I feel like death warmed over. I think I must be hyperthyroid from the switch from Levoxyl to generic Levothyroxine. I skipped my dosage this morning, not wanting to make matters worse. Everything points to me being hyper. I feel flushed and anxious and some shortness of breath. Of course this has to happen on the weekend, when I can’t see a doctor. I almost went to the E.R. last night, but I decided not to. Hope it isn’t something else. Maybe some lunch and a nap will help. I’m supposed to go to work tomorrow, so I hope I’m feeling a bit better by then, because I went to the grocery store just now and I could barely manage that.
    So, next step, make an appointment with endo and what? Try to change dosages? Switch to Synthroid? Anyone switch from Levoxyl to Synthroid (I’ll have to look over the comments again). Ugh!


  43. diane Says:
    June 17th, 2013 at 11:07 AM

    so glad I found this site – when I couldn’t get levoxyl I just decide to quit taking anything since I had found problems with synthroid and Levoxine. Now it has been a while since my levoxyl ran out and I am gaining weight and feeling weird and my nails are peeling. I am not sure what to do – take the stuff I know feels bad or go without.
    It is nice to have this site to see I am not alone with this- thanks


  44. kat Says:
    June 17th, 2013 at 9:37 PM

    I called the FDA Drug division today and was informed that the decision to make levoxyl available is up to Pfizer. Keep getting conflicting information about why and when. I will call Pfizer again tomorrow and keep trying to make them aware of how many of us are seriously affected by this 2014 wait and recall.

  45. Kairol Rosenthal
    Kairol Rosenthal Says:
    June 18th, 2013 at 10:19 AM

    Dear Kat and others,

    I really appreciate your updates on the information you have gathered from contacting Pfizer and the FDA. I have written a new post based on research I did on the recall of Levoxyl. I hope it answers some of the questions about the extent of impact patients can make on the situation. It isn’t hopeful. And, if you have found additional information or have another perspective, please share it on the comment section of this post: http://everythingchangesbook.com/kairol/thyroid-cancer-survivor-hormone

    Thanks again for all of your comments and contributions. I will continue posting on the shortage and ways to cope with it.

    Best,

    Kairol


  46. Bonnie Says:
    June 18th, 2013 at 2:20 PM

    I have now lost 10 lbs. as my health continues to decline since Levoxyl is no longer available. I feel like I’m living in a nightmare trying to take other thyroid medications and having SCARY side effects. I haven’t gotten a well feeling from any if them. I’ve developed joint swellings under my fingernail beds (something new from trial snd error with the drugs ( I hope it isn’t gout). I just started back on Tiersin today and I’m aching all over with a low grade fever like the flu. BP is better but my pulse rises on these drugs.
    Don’t even know if I can tolerate this drug. My jaws and teeth ache and I have thrush started on my tongue again making swallowing difficult. :(

    It’s really sad how much unnecessary misery we now have to put ourselves through. All I can remember now is when I felt good and was living my life

    I am scheduled to go to the Mayo clinic next week all because of the impact this has had on my physical well being. My husband is dealing with a lot of stress and neither of us needs this. I pray my body recovers somehow because unfortunately I can’t live without thyroid medication. Still hopeful of Levoxyl coming back soon by some miracle.


  47. Di Says:
    June 19th, 2013 at 7:24 PM

    I was fortunate to have an extra bottle of Levoxyl, but now I have switched to Syntheroid. After only 10 days on this pill, I have experienced the heart flutter as someone else mentioned. I also have been having terrible heart burn which is a side affect, so maybe this is not working. I don’t know how long I can take this. I could try the generic however reading these comments doesn’t give me much hope. Thyroid problems are very tricky and there is a fine line between having the correct dose or not. I do not believe all manufacturers are the same and that is why there are so many negative responses. I just hope that Levoxyl is back on the market sooner than expected. I hope Pfizer reads these comments and know that there is an urgent demand for their product.

    I have been hypothyroid for almost thirty years and took Armour Thyroid for years. It was okay but I did not feel the drug was not consistent in the dosage because I had many up and down days.


  48. kat Says:
    June 19th, 2013 at 9:57 PM

    Dear Kairol…I read your update on the sincere concern expressed by Pfizer about all of the human suffering we have to endure because of their recall of levoxyl. Levoxyl must not be a big money maker and in their world only “money” and profit” rules. Are there no other pharmaceutical companies that could remake a generic that would be like levoxyl? Probably Pfizer holds the patent. I wonder if their CEO’S would be so apathetic if they had our problem? Of course they could pay a chemist to remake the levoxyl. What are we going to do?

  49. Kairol Rosenthal
    Kairol Rosenthal Says:
    June 20th, 2013 at 1:18 AM

    Hi Kat,

    Regarding your question about other pharmaceutical companies making a generic version of levoxyl – If I am not mistaken, I believe there is a generic of levoxyl: levothyroxine. I think that levoxyl and synthroid are brand names of the generic drug levothyroxine. The generic did not work well for me when I tried it last month so I am going to have to experiment further.

    Yes, it is too bad that health and wellness does not buy anybody a private jet. If you want to read more about how much pharma CEOs rake in on the backs of patients and the government, read this sobering article: http://www.huffingtonpost.com/ethan-rome/big-pharma-ceo-pay_b_3236641.html

    Hang in there.

    Kairol


  50. kat Says:
    June 20th, 2013 at 9:59 PM

    Dear Kairol… Who made the generic levothyroxine that you used? I feel bad for you that it did not work. What about Canadian pharmacies?I am fully aware of the “greed” factor involved in both the medicine and health-care providers. However, I could write you a book on that subject. As I told you earlier I was involved in “local” politics for almost twenty-five years and have some contacts. However, our fight with the “giant” Pfizer is really going to be tough. I do not have the stamina like I once did but will help you in any way you need. Any suggestions?


  51. Amy Says:
    June 21st, 2013 at 4:38 PM

    I am experiencing the same thing many of you are writing about. I have been on Levoxyl for about 18 years and have always felt well on it. For the last month my doctor has tried Synthroid and another brand and both have given me excessive headaches, cause sweating, dizziness, a burning in my face.
    I have been trying to cut the pill in quarters (can you imagine) so that I have some thyroid medication. I am also feeling awful all the time now. The doctor is sending me to an endocrinologist because he is at a loss.


  52. kat Says:
    June 22nd, 2013 at 9:55 PM

    Dear Kairol….I wrote an e-mail to Pfizer”partnering” about our roadblock regarding the recall of levoxyl and received an e-mail stating I would hear from them in two weeks. I know some professinal lobbyists that might be able to “guide” us to a resoultion. I am not optimistic but will persisit. Have a nice weekend.


  53. Carol Says:
    June 23rd, 2013 at 8:26 PM

    I have the same problems. UGH


  54. Nancy Says:
    June 24th, 2013 at 2:27 PM

    I am on .100 levoxyl, have been for years. I also tried synthroid several yrs. ago, really messed me up. My physician never called me to let me know about this, I just found out when getting my auto refill picked up the night before vacation, with only 3 pills left Ugh!
    I thought maybe they would have it where I was going, they do not. My Dr called in levothyroxine. For now I am taking some .112 pills that I had from 2011. Do not know how potent they will be. I was feeling so good!


  55. Bonnie Says:
    June 24th, 2013 at 7:15 PM

    I appreciate the caring and support here.
    I’m glad that someone is notifying Pfizer about our desperation to get Levoxyl back. I’m sp anxious to be back on my regular medication to feel well again.
    I keep looking at the 4 pills I have left of Levoxyl and they are like gold to me. I want to take one so badly, since I haven’t taken anything in two days.
    I stopped all thyroid medication (because of all the adverse reactions) and am leaving for Mayo Clinic in FL tomorrow. They helped me 8 yrs. ago when I was on Levoxyl and had done other issues connected with my thyroid. I hope they can help me on the medication end because I’m really not feeling well at all.
    Please give me Pfizer’s email address so I can send an email. Maybe I can find it online too. Thank you. I’m glad I’m not alone in this… Like all of you, I really, really need my medication back and get my life back to normal again. God Bless You All. :)


  56. Bonnie Says:
    June 24th, 2013 at 7:49 PM

    Hi Amy,
    I’ve done the same thing cutting my medication into quarters for the same reasons you have. I’ve also had the same reactions with the medications. I hear you with how you are feeling and totally sympathize and totally relate.

    Sorry for any typos in my replies (on my phone typing and that is why).


  57. kat Says:
    June 24th, 2013 at 9:55 PM

    Dear Bonnie…I hope that you are feeling better. I have ten levoxyl left and really starting to have severe anxiety about the length of time Pfizer is making us wait for their availabilty. Pfizer’s e-mail address is simply Pfizer.com with a list of options. There has to be a solution since so many of us cannot take anyting except levoxyl.


  58. Jackie Says:
    June 24th, 2013 at 10:51 PM

    Dear Friends,
    I am in the same situation you are, having been on levoxyl since 1998 after removal of my right gland due to papillary cancer. It is unfortunate that we should have to depend on this or any medication for that matter. God help us, we need you now. I am going to say a special prayer for all of us tonight. Peace to all of you.


  59. Alyssa Says:
    June 25th, 2013 at 12:03 AM

    I have suffered for many years with a constant period that never went away. After 5 doctors not being able to figure out what was wrong and 3 endocrinologists trying different thyroid med brands, constantly telling me its not your thyroid. I was at a loss. When I was finally put on LEVOXYL my period returned to normal for the first time in 10 years! Now I had to switch to synthroid and my continuous period has started again and severely heavy! I don’t know what to do, my husband and I want another kid, but a hysterectomy seems to be the only option. Please does anyone know anything???? Is there any thyroid med most similar to levoxyl beside the generic and besides synthroid?? Desperate…..

  60. Kairol Rosenthal
    Kairol Rosenthal Says:
    June 25th, 2013 at 12:06 AM

    Bonnie, Jackie, and others, I am thinking about you as we all go through this hard change. I know how much it feels like our backs may be against the walls with few options and many side effects. I think of how I have made it through other really hard medical challenges and come out on the other side. The struggle was not always pretty, but I unearthed coping mechanisms along the way that got me through. I am trying hard right now to remember those times and coach myself through this change. I feel for you all as it is hard going right now. Hang in there and I will try to do the same!

    Kairol


  61. LQ Says:
    June 25th, 2013 at 8:24 AM

    I also cannot take Synthroid, and have had severe burning in my stomach since switching to the generic a week ago. I used to take .20 of Levoxyl daily (for twenty years). I had my thyroid removed due to cancer, so not taking meds is not an option. Has anyone else had the stomach issues?


  62. LQ Says:
    June 25th, 2013 at 8:25 AM

    I also cannot take Synthroid, and have had severe burning in my stomach since switching to the generic a week ago. I used to take .20 of Levoxyl daily (for twenty years). I had my thyroid removed due to cancer, so not taking meds is not an option. Has anyone else had the stomach issues?


  63. Bonnie Says:
    June 25th, 2013 at 9:23 AM

    I called Pfizer Customer Service & Product Inquiries at 1-800-879-3477 and spoke to Corinne.
    I expressed my health situation, putting it all out there so they know this medicine is my number ONE priority, my lifeline, to feeling well again. They said they would pass the information along , taking my name, address & phone number to be contacted. I told them that many are struggling with their health now that the medication is gone and the other medications have too many adverse side effects (for me they do).

    This morning out of desperation I quartered one of my Levoxyl pills and took it. Very sad to ration your thyroid medicine. I feel better without any ill side effects at all.

    I’ve been having a lot of bad hypothyroid symptoms. Dry, tight skin, muscle cramps, hardly able to walk with stiff, sore muscles snd pain in my joints, numbness and pain along my nerves, bad headaches and feeling so sick. Being without the right medication is horrible and frightening.

    Last night was another bad night. I get too much anxiety and a host of symptoms related to hypothyroidism being off medication as well. Difficult situation. Thanks for asking Kat. Thanks for your support Kairol. Nice to meet all of you on this blog.
    I will update on Mayo Clinic and what they say.


  64. Bonnie Says:
    June 25th, 2013 at 9:32 AM

    Yes LQ, I’ve had stomach distress with burning on the other medications too. Severe enough as well as headaches. Levoxyl’s inactive ingredients are gentle on the stomach and I have been missing that comfort feeling. Your not alone with symptoms your experiencing. I pray for all of us to be able to work through this somehow.


  65. kat Says:
    June 25th, 2013 at 2:42 PM

    I really feel sorry for all of us.I will call the pfizer number and suggest that we all do the same. I get updates from a government site that states that Pfizer is fighting a Viagara recall. Now there is a money maker and apparently levoxyl is not. Kairol, I agree with you and have many life challenges with my health but you and I both know the viagara update is proof of corporate greed and indifference. Let you know what I get for information when I call Pfizer tomorrow…


  66. Bonnie Says:
    June 25th, 2013 at 4:27 PM

    We have to keep fighting to get our medicine back ASAP!

    Phone calls to Pfizer couldn’t hurt. Keep updating and I’ll be checking this blog.

    I feel sorry for all of us too (really isn’t fair to jeopardize our health this way).


  67. kat Says:
    June 25th, 2013 at 10:07 PM

    Dear Bonnie and all of you affected by the levoxyl shortage…I learned from politics and teaching that women always persist and usually get results. I know this one is not going to be easy but I know our efforts along with our higher powers will at least get recognition. This seems like a nightmare but having all of you to talk to makes it so much better. I just don’t have the stamina (I have diabetes and am a cancer survivor that struggles with life and health every day). However, I really believe that if we stick together and persist we will get reckognition and results.


  68. anonymous Says:
    June 26th, 2013 at 9:29 AM

    I posted this comment also to the June 18th blog entry, but everyone seems to be responding here. So I am posting this again.
    I have been on Levoxyl for 13 years after thyroid cancer. I switched to Synthroid eight weeks ago and can no longer sleep past 6am, have digestive issues, and feel more out of it. I have called the Pfizer 1-800-879-3477 number and asked them to bring Levoxyl back to the market ASAP. I let them know that they were negatively impacting my health and many of their customers health. While I think we all should continue to call and write, I believe the only way to get their attention is to get the MEDIA involved. No company or government wants bad press and this usually gets more action. The other option is to file a class action lawsuit. This is easy for me to say, but of course I have no influence on the media or the ability to file a lawsuit. I personally will continue to call, work with my doctor and hope for the best. We have to live with a new normal of course, but it is so frustrating that this was caused by big business just wanting to help their bottom line. If someone out there knows how to get this in the media, that would be big help.


  69. kat Says:
    June 26th, 2013 at 9:57 PM

    Dear Anonymous and everyone else affected by the levoxyl shortage…I used to know many media people. However, I have been out of the “political” loop for some years now. However…I will go into the archives to see who will help make this public. However, I have to be sure that we are all in this together. I am not afraid of Pfizer but numbers count when you are fighting corporate indifference and greed. Let you all know what I come up with tomorrow.


  70. LQ Says:
    June 27th, 2013 at 7:40 AM

    The way to go these days is social media…hit their Facebook and Twitter pages. Other avenues can’t hurt, but social media can get it out there quickly!


  71. Enchanted Seashells Says:
    June 27th, 2013 at 9:00 AM

    I agree, we need to mount a major campaign on twitter/FB. That won’t be ignored.I just started #pfizer @pfizer


  72. Bonnie Says:
    June 28th, 2013 at 1:52 PM

    Enchanted Seashells; where is the Pfizer FB acct. you started? I never set up a twitter acct.

    Everything is hanging in limbo for me. :(
    Currently, I’ve been rationing my 3 days left of Levoxyl (my back is up against the wall).

    I was at the Mayo Clinic for two days and basically they drew 7 vials of blood from me and I’m waiting to hear back today from them about the results. I had a lot of thyroid related issues to address and I thought they would check my thyroid inside and out but they didn’t do but a basic check up. With as bad as I’m feeling I’m disappointed and the unknown with thyroid med. that may or may not work out for me is beyond upsetting.

    They couldn’t offer me different drugs then what I’ve tried with reactions, but the dr said she could recommend Armour, (although they don’t use it there) or a compound (that i mentioned ) that can can do Levoxyl’s ingredients in a capsule and the endo agrees.

    Here I wait on my lab results before I can do anything else. I’m

    I would do anything to get Levoxyl back, so I would stand behind others to work on getting it back faster if that would help.


  73. kat Says:
    June 28th, 2013 at 10:06 PM

    I agree with all of you. I will have to get involved with Face Book and Twitter. I had a “rough” week and will call Pfizer on Monday and also go to Face Book. and come up to the 21st century(haha).Talk to you all soon.


  74. Bonnie Says:
    June 30th, 2013 at 2:55 PM

    I check this blog often for updates and replies.
    Trying to cope is the hardest thing when you know your health is hanging in the balance and the thyroid medication issues become an overwhelming burden. Coping with all of this is beyond difficult. I haven’t felt well in two months and yes, I’m scared. The medications that do not make me feel well have been tried over and over and I’m so tired of not feeling well and want my life back. I pray everyday to have restored thyroid health. Knowing how well I felt 2 months ago is all I remember and think about.

    I was to hear back on my labs from Mayo Clinic Friday and nothing yet.
    I need to know about the results and go from there. I’m so disappointed in drs anymore. It’s all very sad. :(. Going through this misery for what reason?
    Maybe I shouldn’t put my feelings out there on a blog, but I know many of you are struggling too without Levoxyl. I’ll update when I know anything about my labs and recommendations.


  75. Lisa Says:
    June 30th, 2013 at 6:15 PM

    I am suffering bad. 3 weeks ago my endo switched me to synthroid when I couldn’t get my levoxyl I’ve been on for 10 years. I am weak swollen lump in throat puffy dry eyes red rasht face etc. I went to endo who got irritated with me and said my symptoms were not from synthroid. I did research on the fillers and am allergic to acacia povidone lactose gluten. I am being poisoned. I paged my pcp and told her hysterically what was happening. I told her endo would not use the compounding pharmacy I’ve researched extensively. She told me she will do it and let endo know. I have to see her tomorrow because my symptoms are so severe. But she will help me. I am feeling like I’m dying. I have hypo hashis.


  76. Enchanted Seashells Says:
    June 30th, 2013 at 6:33 PM

    I am so sorry that you are suffering. I have a doctor, who although he might be a little skeptical of what I research at times, always listens to me. I feel very good on the compound with no artificial fillers. I really hope you get some and start to feel better. Only someone who knows what you’re going through can understand. It’s horrible.


  77. kat Says:
    June 30th, 2013 at 9:57 PM

    I called pharmacies when I first learned about this and was told they would not compound a medication if it were available in a generic form. I live in PA. Please tell me how you got the pharmacist to compund? My doctor will do what I ask if it is legal and allowable because I cannot take anything except the levoxyl. Just think if we were CEO”s from Pfizer we could hire and pay the chemist to make up a batch of levoxyl. (Ha Ha), but really true. No one should feel ashamed of their reaction to the other thyroid medicineS. Again, I went through this in the 70″s and Mayo Clinic validated the truth. Then I found levoxyl and now the nightmare is happening again. Please do not let other people make you feel that you are “crazy” because you do not fit into the medical model.


  78. Enchanted Seashells Says:
    June 30th, 2013 at 11:35 PM

    Here’s where I went, I know they do mail order too, and I never heard about a compounding pharmacy refusing to fill a prescription for any reason if you present a prescription. The pharmacist was SO nice to me (plus he used to make medications for my cat who had HYPERthyroid) and he is so knowledgeable. His name is Dieter. Please let me know and good luck.
    Coast Compounding Pharmacy
    1838 S Coast Hwy
    (between Kelly St & Cassidy St)
    Oceanside, CA 92054
    Neighborhood: Oceanside
    (760) 433-6233
    http://www.compoundingpro.com/

  79. Kairol Rosenthal
    Kairol Rosenthal Says:
    July 1st, 2013 at 1:52 AM

    Enchanted Seashells, I am glad that you have been able to find a solution through a compounding pharmacy. I do, however, want to let other readers know that compounding pharmacies may not be right for everyone. One of the biggest differences between a compounding pharmacy and a regular pharmacy is that the drugs they create are not FDA-approved. Here are some risks to consider if you are investigating compounding pharmacies: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm107836.htm

    As with any health care solutions you read about here on elsewhere online, please be sure to discuss the pros and cons with all of your doctors.


  80. Anonymous Says:
    July 1st, 2013 at 8:47 AM

    I was on Levoxyl since 1998 and was given levoxathyrine about 2 2 weeks ago and have not had any problems yet. Hopefully they find something suitable for you as we are all different. If you have any symtoms call your doctor and ask if you should be changed or it’s something that will pass. Good Luck to all!!!

  81. Kairol Rosenthal
    Kairol Rosenthal Says:
    July 1st, 2013 at 10:16 AM

    Thanks Anonymous on July 1. I am so glad to know you have had an easy transition. It is a good reminder that often blogs voice the experiences of those who have had the most challenging experiences. To balance out perspectives, I have written a new post about the positive coping strategies I have found to deal with the transition and what is working best for me. I hope everyone takes a glance at that post too and can add useful tips or comments of encouragement. http://everythingchangesbook.com/kairol/thyroid-hormone-replacement


  82. Bonnie Says:
    July 1st, 2013 at 5:37 PM

    I am beyond frustrated and upset. I keep leaving messages at Mayo Clinic to hear back on my lab work from last week (and it is all there) but I haven’t heard anything. They keep saying the dr will be calling you soon with the results (the dr said she would call me Friday of last week). I tried setting up an online acct there and got to the end of registering and something didn’t match their information, so I couldn’t view my labs online either. I have a right to know about my lab results and no phone call back is infuriating. Roadblocks at every turn it seems.

    I had a plan. Getting the lab results then calling my endocrinologist to discuss the compounding pharmacy that I checked into who said they could compound Levoxyl in a capsule form. Not that this is the answer but I get the feeling like no one cares enough to really address my issues.

    Currently back on Tirosint (which I’m sure is not the right dose) from samples I have. The drug gives me adverse reactions. I’m so dry everywhere and my corneas just burn on this drug. My dry mouth with post nasal problems (thrush symptoms), and continuing swallowing problems (feels like my thyroid cyst enlarged some and with my gag reflex is causing dry heaving). Seemed like the lesser evil of the other drugs for right now but I don’t like how it makes me feel at all. Have to be able to eat and it’s a challenge at times.

    Before all this happened with the recall on Levoxyl, we had all kinds of plans made, social events with my husband’s work, family trips and so forth. I don’t feel much like socializing with feeling like I’m in poor health (which I currently am). All the money spent to fix this problem and its hard to feel positive when the experts in medicine take your condition as a non serious issue. I have been on and off medicine for over two months now with significant wt loss I’m sure my Tsh of 14 (was at 2 and balanced two months ago) has sky rocketed and I need to know so the proper dose is given. I want to be fixed and move on.

    Forgive me for venting but I’m really struggling with my health right now.


  83. Bonnie Says:
    July 1st, 2013 at 7:07 PM

    For Kairol and Anonymous;

    I’m glad you found what works for you for thyroid replacement until Levoxyl comes back.


  84. kat Says:
    July 1st, 2013 at 10:00 PM

    Dear Kairol and Anonymous ..I am so happy for you both that you have found a positive thyroid replacement. Bonnie..thank-you so very much for the information and name of a reputable pharmacy regarding compounding.I will talk this over with my Doctor and read what you suggested Kairol. Most of all thank-you everyone for sharing and being supportive. Maybe we ought to rent a bus and pay Pfizer a visit.(we would probable end up wearing prison stripes).


  85. Linda Lou Says:
    July 3rd, 2013 at 8:23 PM

    I have been on levoxyl for about 15 years and now they put me on the levoxyleen or how ever you spell it. Been having really bad palpitations all the time and when I sleep it wakes me. Also some balance problems, did not know it was from the change, looked up when is levoxyl coming back and saw this page, makes me feel better knowing others are having problems, will call my Dr. tomorrow to see what he says but can any one help me … what to do can’t go until next year like this.


  86. Bonnie Says:
    July 4th, 2013 at 10:58 AM

    It’s a real injustice Linda. Many of us are struggling day to day, trying to cope without Levoxyl as our thyroid medication. Like others, I have to take something and I’ve been going back and forth between my endocrinologist and the thyroid meds available to see which one I can tolerate. I’m not doing so well at that, having problems with each one. I’m going round in circles basically. Haven’t tried the compounding yet or the natural (Armour) yet.

    There have been roadblocks to face at each turn, and waiting games (nothing is easy with this medication ordeal). Either it’s a weekend or the dr is on vacation, so I have been my own dr with the samples and pills that I have to get thyroid hormone in me. I do inform the dr what I’ve done when they are available. I left a message to try compounding at the endocrinologist. I’d like to go away middle of next week with my husband with plans we made when I was feeling well, and I hope I can go. I don’t like struggling with eating and so forth in public, which is what I’ve been doing, then bringing the food home because j can’t eat so well. I was balanced on Levoxyl for 10 yrs and felt good with a good appetite. This has changed over the 2 months I’ve been off it tying to take other thyroid meds. My vision is off, constant headaches, and other unpleasant side effects. My TSH is up to 15 now and I just want this problem fixed. All I drink is water, I’m so dried out. All I can say is the other drugs in my body are not a good match for me at all. Good luck Linda.


  87. Leslie Says:
    July 4th, 2013 at 11:16 AM

    After a lot of research on the Internet and talks with pharmacists I finally found a generic levothyroxine closest in its inactive ingredients to Levoxyl and with the fewest dyes: Sandoz. I found a pharmacy, HyVee, that usually (according to the pharmacist I spoke with) carries Sandoz. Told my doctor’s nurse who told the doctor. The nurse called in 88 mcg (my most recent Levoxyl dose) to HyVee and specified it be the Sandoz generic. Pretty much immediately I got relief from the terrible side effects Synthroid was causing me. I am beginning to feel better–doing the waiting game to see if the dose will need adjusting. The really good thing so far is that I do not have immediate negative effects like I did with Synthroid and Triosint. I pray that this might help anyone. My prayers are with everyone suffering from the absence of Levoxyl–this is very difficult and I am so glad we have each other for support. God bless you all.


  88. Leslie Says:
    July 4th, 2013 at 11:21 AM

    I saw my primary care doctor a few weeks ago and told him to put that I was allergic to Synthroid on/in my chart. Plan to do the same with my former endo who I am switching back to. Hopefully, that will be taken seriously in the future (buried deep in my chart was a doctor’s letter stating I had a sensitivity to Synthroid. I don’t know if “allergy” is the correct word but the experience is as distressing if not more so than an allergy.)

  89. Kairol Rosenthal
    Kairol Rosenthal Says:
    July 4th, 2013 at 11:25 AM

    Leslie,
    It sounds like you did a supreme job of advocating for yourself. I am glad to hear you have a new alternative to try out and I hope the Sandoz does the trick. Thanks so much for sharing your information here so that others may benefit from your experience.
    Wishing you all the best,
    Kairol


  90. kat Says:
    July 5th, 2013 at 10:11 PM

    Dear Leslie and everyone affected by this corporate indifference… I called pfizer customer support and again was told that 2014 the levoxyl would be available. I asked my oharmacist about the Sandoz levothyroxine and they will get it for me if the mylan levo does not work. Thank-you Leslie for giving me this information and I am so happy it worked for you. My doctor gave me all the samples he had of the levoxyl today and I have about one month before I start the journey. Thanks to all of you for the support/


  91. Leslie Says:
    July 6th, 2013 at 1:14 AM

    Kat, Thank you for calling Pfizer cust support. I’m glad you have a whole month’s supply of Levoxyl and Plan A and Plan B mapped out and ready to go after that. Please keep us informed of how you feel. If you have concerns or questions re the Sandoz levothyroxine, I will be happy to share all I know/have experienced re it. I encourage and want to support everyone affected by the Levoxyl disappearance. One day, one hour, one minute at a time we can get through this together–and emerge feeling as well as we possibly can, and possibly better than before

    Thank you, Kairol, for your good wishes, support, and advocacy.


  92. kat Says:
    July 8th, 2013 at 9:47 PM

    Dear Leslie and Kairol and everyone going through the “levoxyl” nightmare. I called my pharmacist and he ordered the Sandoz levothyroxine for me. When I finish my levoxyl I will start the Sanoz “levo”. Leslie, I cannot thank-you enough for doing the research and sharing. I just hope my freaky chemistry likes the Sanoz. I cannot say enough “thank-you” to all of you who have made this terrible experience bearable. We will all stick together and win the war over the giant Pfizer and their corporate indifference. God-Bless you all and talk to you soon.


  93. JoAnna Weigold Says:
    July 14th, 2013 at 5:25 PM

    wow,after reading all the post I sure can relate to most of them. Being on Levoxyl for 12 years and not able to take generic or Synthroid.I sure wish I could get my Levoxyl back,felt so much better. It is really bad feeling awful and trying to take care of my 80 year old parents. Thank you Pfizer !!!!!!!!!!!!!


  94. Beverley Says:
    July 14th, 2013 at 7:47 PM

    Thanks for these posts, I really thought that the end had come. I had to switch from Levoxyl to Synthroid and I may as well not be taking anything. All of my hypothyroid symptoms have returned – feel jittery, have heart palpatations, headaches, lack of focus and am totally lethargic. I suddenly remember that in 2000 I was put on Synthroid and it did not work – thus all of these years I have been on Levoxyl with few problems.


  95. kat Says:
    July 15th, 2013 at 9:48 PM

    Dear Beverley,Joanna Kairol and everyone…I got the levothyroxine made by Sandoz filled on Friday. Will begin taking it sometime in August. Leslie…Where did you get the information regarding the Sandoz composition of “levo” was comparable to the levoxyl? It is ironic how all of us can be scared of thyroid pills because Pfizer does not care. Hope you all get good results and something like a miracle happens and we can get the levoxyl before the end of the year.


  96. MAMM Says:
    July 17th, 2013 at 8:16 AM

    Dear Ladies, I too am one of you. I have been on Levoxyl since 2000 and since mid May 2013 was told of having to switch meds, my choices Synthroid or levothyroxine. I also, have high BP, coupled with being post-menopausal. So, needless to say I am having issues with the switch to synthroid.
    I am so glad to know others are having similar issues with Synthroid – Thanks so much for your posts.


  97. kat Says:
    July 17th, 2013 at 10:04 PM

    Hi everyone. If you have the time I found a web site called http://www.fiercepharmamanufacturing.com. There is an article stating that Pfizer is going to reformulate the levoxyl because some of the strengths were low in potency.This site will provide subscribers with free newsletters twice a month. Why did King ever have to sale to Pfizer except for making a great deal of money? I just wonderhow the reformulated levoxyl will affect us?


  98. Minka Says:
    July 19th, 2013 at 2:33 AM

    Hello, I wanted to share my story and post my comment and hope that this can somehow help someone, I was diagnosed with hypothyroid 20 years ago ,in Germany I was using Euthyrox, when I come to USA, 25 years ago I could not find same medication and I stop using any about 8 month or so. When my doctor check thyroid level blood test results come abnormal. I went to Endocrinologist who prescribed Synthroid 100 mcg. When I start to take Synthroid I had feeling that I will die, I had unbelievable headache, stomach pain, hands shaking, legs swelling, pressure in my chest, it feels that each day I was about having heart attack. I could not walk, short distance , I was waking up every single night for 6 month, I try to talk to my endocrinologist , she told me I have to keep taking medicine and there is nothing she can do about is my disease that is making me sick. After my medical insurance change I needed to switch my endocrinologist , and went to another doctor, who told me same thing, that my blood test is abnormal and I need to keep taking synthroid, at that point I was not sure when I will feel better it was already 1 year and I feel like I m dying. I left my job , as I could not work anymore, and I lost my medical insurance and stop going to my doctor but continue to use synthroid, as I was told by my doctor if I stop taking I would ended up in hospital, my body will shut down and I will not survive. After going back to work temporary job for Hospital, I needed another refill for synthroid, but since I stop going to my doctor he would not prescribe for me without another visit. I decided to visit one of new primary care doctors as their visit was a lot less expensive, and went to one doctors that was working in hospital where I just got job. I was crying for hours and that was listening all my symptoms, when he told me STOP synthroid right now, if your blood test is not right and if you are not feeling good than you should not use.You are sensitive , and for sensitive people synthroid is not good medication, he told me that he will do some research, and for me to come back in week. After a week I come back that doctor told me that for sensitive people LEVOXYL is best, he also talk to endocrinologist who still think I need to use Synthroid, and my symptoms from synthroid were beacouse high dose , but if I wanted to try levoxyl that would be ok, as long test results come back ok after 2 weeks. I have started levoxyl 0.25 mg very small dose, my blood test was good, and than after another 2 weeks I was given 0.50 mg, than 0.75 mg, and finally 100mcg. My new endocrinologist was surprised how well I was doing on levoxyl, I was getting my life back after only couple weeks. Since than I was for 10 years on 100 mcg LEVOXYL and I used every morning with food, my doctor told if I use with food I needed to take every day same due to absorbtion, is possible if I taking with food that I needed higher does due less absorbtion, so for every day I was taking same and was doing great, even start running every day and working 2 jobs. Due to LEVOXYL shortage since May I m back being sick again, even possible will ended up in Hospital, My old doctor are no longer working in my city and I have now new endo,they gave me levothyroxine 100 mcg, for one week I felt mild side effect like allergic reaction, I spoke with my new endo, and she switch me armour T 65 mg, I had nausea chest pain,throwing up for 2 days and doctor told me to stop using anything for 4 weeks, and than gave me tirosint 100 mcg, as soon as I took 1 tablet I felt like sharp pain thru my whole body, heart stomach, head and feel like I could not see,my whole body was flushing like sunburn, in morning I could not move my hands or legs, I took pain medication, and call doctor she told me that is not normal to feel like that from Tirosint or armour or Levothyroxin, but I can stop tirsoint that day and go to ER. I could not afford to go to ER, and I was hoping that If I don’t take medication that day I will be ok, and I felt better after noon and next day. My doctor had pre-scribed now Nature throid 16.25 mg and I m still havin side effect but I m trying to tolerate as for couple hours I have arm and legs weekness, fatigue, hands shaking, feeling pulse thru my left side of body and I can not go out on sun. Today on my way from work there was 100 degrees outside and while I was driving I had another horrible symptoms that I thought I will ended up in ER . I m feeling nausea for rest of day. My endocrinologist told me that I would need to go Hospital to see why I can not take any of new medication, but I was so good with Levoxyl, she is really working with and trying every possible medication out there, she is constantly on call for me , and it helps to know that I can call her any time if any issue arise, she is doctor that feels for her patient and try to help, but I m just not doing well on any other medication beside Levoxyl. And I don’t want to go to hospital beacouse I m doing great if I don’t take any medication, so I will try o keep taking Nature throid for another week , and see if I m not feeling good I m stop taking,my blood test is due next week.I m not sure why everyone out there beside my new endo wanted people to take synthroid or levothyroxine,every where I go when I talk to my pharmacist, dentist, my primary care doctor any of previos endocrinologist they keep tell in me Synthroid is must taking medication, why ? Even my pharmacist told my endo when she ordered nature throid, they don’t make this anymore,is no longer medicine in use, and should go back to synthroid, When I call another pharmacy just to check and buy Nature throid they told is in stock and re-fill without any problems. So I m keep praying for LEVOXYL and hoping to get my life back, I don’t think I will be ok with nature throid, but I will give another try for one more week.


  99. Minka Says:
    July 19th, 2013 at 2:37 AM

    just wanted to correct my previos notes I come to usa 15 years ago, and after 8 months stop using thyroid medication


  100. Sunrise Says:
    July 19th, 2013 at 2:03 PM

    Ian Read is Chairman of the Board and Chief Executive Officer of Pfizer…the phone number for the corporate office is 212 733 2323. Calling customer service is a joke. Perhaps if enough people called Ian Read something might get done sooner than later. I had my thyroid removed over 30 years ago. I’ve tried all the thyroid medications and had major problems. I started taking Levoxyl over a year ago and my body tolerated it well. No adverse symptoms.

    I was told by Pfizer that Levoxyl won’t be back on the market until at least mid 2014 and then who knows.

    I would start calling Pizer’s CEO. If done in mass we might make a difference.


  101. Evie Says:
    July 19th, 2013 at 5:09 PM

    Was on Levoxyl 150mcg for 10 years interspersed with some trials on generic levothyroxine with which I had poor results each time tried. Since gradually losing all natural production of my thyroid gland after an unsuccessful endarterectomy in 1997 that left my right carotid artery ligated with a big long neck scar and a chain of metal surgical clips running up my internal neck, I have not ever felt the same, but did reach some level of stability on Levoxyl. I’m a pretty healthy 71 year old, otherwise, due to the exclusion of all wheat from my diet last Feb. The Levoxyl recall caught me by surprise. No alert was provided to me personally; by Pfizer, Walgreen’s pharmacy nor my medical provider. The latter was totally uninformed and tried to reorder Levoxyl for me even after I informed them of the recall, because in today’s medical world patients are too often ignored or disbelieved. Though I had a history of problems with the generic replacement med, my insurance refused me anything but those generics by Lannert. So I took them after having none to take for 4 days. At first I had some sort of allergic URI/sinus symptoms, with what seemed like fever, chills, clammy cold sweat/hot flashes, nervousness, insomnia, irritability inability to concentrate (couldn’t read in bed at night anymore)etc. Took it for weeks, then went to the Doc. He agreed to try me on Synthroid, but I had to petition the insurance company before they grudgingly okayed it. Now on 2nd day of Sythroid. Had some of the URI sxs and feeling hot/sweaty, but also notice some improvenent in mental status, energy and mood. I gave up all wheat and cows milk in February and have felt so very much better for it/lost weight/cravings/ GI symptoms that I feel I can make this new med work for me, even though it has minute filler amounts of lactose and gluten. Many of the complaints I see by those suffering here could be controlled with nutrition. Go to the wonderful,Dr. Davis’ “Wheat Belly Blog” and learn what is really happening to your body from the Food industry and GMO wheat and other foods you eat several times a day. Do not give your health power over to Big Pharma or the food industry giants. Best of health and happiness to all here.


  102. kat Says:
    July 20th, 2013 at 10:03 PM

    Dear Sunrise and all…thank you for the CEO”s phone number. I will call on Monday. Evie…sorry that you are suffering. I hope if enough of us call the CEO of Pfizer they will reformulate and make Levoxyl availabe sooner than 2014. Have a nice weekend.


  103. Bonnie Says:
    July 22nd, 2013 at 10:51 AM

    Sunrise: Did you talk to Ian Read directly? I called them a few minutes ago at that number and asked to speak to Ian Read. Someone named Darren answered the phone and I gave him my phone number. He said he would send an email to this gentleman that I wanted to speak to him about what I was calling about (Levoxyl recall and shortage). I told him I would call back tomorrow if I heard nothing today. I hope I’m not being blown off and get to speak this man. I didn’t leave an email address (I think they were hoping I would) and I will tomorrow if this man isn’t available to speak to. I will share this information on another forum, “Levoxyl Shortage Affecting Thyroid Patients”.

    Like many of you, I am really struggling with my health. It will soon be three months that I’ve been without Levoxyl and the other thyroid medications I’ve tried have not been working out. The side effects are not good and it takes its toll on a person. I am currently taking something compounded, and I’m having a lot of problems with it.

    Although Im feeling pretty tired and frail these days, We need to keep working toward a solution to get our medicine back as soon as possible.

    I pray for everyone on and outside of these forums having to go through this, especially if your like I am and can’t find a replacement that makes you feel well without all the negative side effects (difficult situation).
    I check the forums daily as a form of support.
    God Bless


  104. Sunrise Says:
    July 22nd, 2013 at 11:40 AM

    Bonnie,

    I didn’t speak to Ian Read directly. I spoke to an assistant in his office, this was back when the recall happened. I did get answers to my questions that I wasn’t able to get from customer service. They did have someone get back to me. When you speak to people at this level instead of the customer service, you get heard. They will put someone in touch with you, They will give you realtime answers. If enough people call and keep calling Ian Read and the top people at Pfizer will know.

    Sunrise


  105. Bonnie Says:
    July 22nd, 2013 at 12:00 PM

    Thanks Sunrise. I’ll keep you updated, and you all keep me updated as well. :)


  106. Sunrise Says:
    July 22nd, 2013 at 2:58 PM

    I just spoke to someone at the FDA and asked if he knew any way of getting Pfizer to move more quickly. He said one avenue was for everyone to call their Congress people; representatives and senators and complain. Also to keep calling Pfizer and the FDA. FDA phone number is 855 543-3784. If enough people keep calling perhaps we can get them to manufacture Levoxyl faster.
    The corporate office number is 212 733 2323.
    Here are the names of some of their corporate executives:
    Ian Read, CEO;
    Frank D’Amelio
    Executive Vice President, Business Operations and Chief Financial Officer; Anthony J. Maddaluna
    Executive Vice President / President, Pfizer Global Supply;
    Olivier Brandicourt
    President and General Manager, Emerging Markets and Established Products;
    Mikael Dolsten
    President, Worldwide Research & Development;
    I believe all of these executives can be reached at the corporate office phone number.
    Let’s call them all.
    Sunrise


  107. kat Says:
    July 23rd, 2013 at 12:19 PM

    Dear Everyone…Called the FDA and left a voice message. Called Mr. Read’s office and talked to a Darrin. Told him the problem we are all facing. He asked for my home phone number and e-mail address and I gave him both. I will persist and I hope everyone else does. I know that it we are being charged for the phone calls but if we can have the levoxyl back sooner it is worth. God Bless you all…


  108. Bonnie Says:
    July 23rd, 2013 at 5:05 PM

    I also called again today and spoke to Darren again. He apologized that no one got back to me, and I gave him my email address too and he verified my phone number. He did try to connect me with Mr. Reads office (so he said) and no one was there.
    I vented to Darren about all my suffering and others without the medication.
    Yes, I’m desperate.
    I’m feeling so horrible without Levoxyl in my system.:(

    May God continue to give us strength in this situation.

    Keep sharing so I know you are ok on this forum.


  109. Lena Says:
    July 23rd, 2013 at 9:34 PM

    MAMM my story is very similar to yours…. I was horrified to discover after 13 years my medicine was gone…. I have been on Synthroid for about a month….I have not been sleeping well and now I am having a serious problem with one of my eyes (although my endocrinologist says it is not related to the Synthroid) …. I feel as if my body is surging … Just so very sad over all this…..


  110. kat Says:
    July 23rd, 2013 at 9:35 PM

    Dear Bonnie and everyone…. a representative called me back from the FDA. The number was private so I cannot share it with you. I had company so I forgot to get his name but he really was genuine. I told him how serious this recall is and for so long. Please try to call the FDA. No call or e-mail from Pfizer CEO but will try again tomorrow. I really believe if we keep calling and are persistent it will make a difference. Hang in there Bonnie we will stick together and always remember there is attention in numbers,


  111. Sunrise Says:
    July 23rd, 2013 at 10:06 PM

    Another suggestion that was made to be my the person I spoke to at the FDA was to also contact our people in Congress. Call your representatives and senators. If we make enough noise. Someone might be able to help us.

    Don’t give up. Keep trying all avenues.

    All the best,
    Sunrise


  112. Bonnie Says:
    July 25th, 2013 at 7:56 AM

    I called the FDA today and talked to Barbara.
    I was on the phone for awhile with her. I thought she was very caring and a good listener. I really plead my case on how much this medication is needed, but she didn’t respond when I inquiried about Levoxyl coming out sooner then expected. She said I could call King Pharmacy and ask them, then realized after looking for the phone number that Pfizer bought them out and so that was pretty much a dead end there.

    I asked about the recalls and she only claimed to know about the one with the odor issues but that was all. I got very emotional on the phone about wanting my quality of life back, and if she would call me if she heard anything about Levoxyl.

    I have not heard back from Ian Read’s office today.
    I did contact two senators here in FL last week. Hope I hear something back.

    Thanks for all the contacts to call Sunrise. I often think my heartfelt tears would be enough to get someone motivated to help.

    Always Good to hear from you Kat!

    Glad to hear from everyone who shares their stories and I certainly sympathize with all of you going through finding another thyroid replacement until Levoxyl comes back.

    God Bless!


  113. BBK Says:
    July 25th, 2013 at 8:17 AM

    I tried to call Mr. Reid, Pfizer’s CEO hoping to find out when we can expect to get Levoxyl back. I was unable to get past a voice mail this morning but I left a message on why I was calling. Like so many of you, I am suffering with hypo symptoms. I cannot take Synthroid.
    I urge each of you to at least make a call to Mr. Reid’s office 212.733.2323 and complain. Sometimes the “sqeaky wheel gets the grease”.
    Blessings to each of you!


  114. Tracy Says:
    July 28th, 2013 at 10:00 AM

    Hi, I am the “anonymous post from June26. Since I really don’t have to be anonymous, I decided to use my name this time. I was on Synthroid for two months and just felt terrible, so I went to my Dr. – TSH levels hadn’t changed much but he suggested I try the generic levothyroxine. I filled the prescription at my local pharmacy (Bartell Drugstore in Washington state) and they just happen to use the Sandoz brand that Leslie mentioned in an earlier post and I also read about on some other websites. Within 2 days I was sleeping again and feeling better, but I knew that I needed to give it time before I could really be sure. It has now been 4 weeks and I really do feel back to normal. All of the weird things I was feeling on Synthroid went away. I will still go back to Dr. in another month or so and get a blood test and monitor things closely, but I now have hope.
    Now if only I could get my teenager to not stay out so late – maybe that would help me sleep better as well!

  115. Kairol Rosenthal
    Kairol Rosenthal Says:
    July 29th, 2013 at 5:43 PM

    OH HAPPY DAY!

    I thought I would share with you all my good news. I just got my blood tests back from my Dr and my TSH level is .02. Hurray. That is the level I have been at for 5+ years, and is recommended for me as a thyroid cancer patient. I have finally adjusted to synthroid and was concerned that if my TSH was too high, we would need to start adjusting my dosage. Luckily, I won’t need to.

    Like many of you, this spring I had to stop levoxly, I went through heart palpitations on levoxthyroxine, and then started synthroid which caused extreme tiredness and made my head race in ways I have never experienced. But I chose to stick it out on the synthroid and after a few weeks, my symptoms subsided. I am relieved that I can stay on my current synthroid dosage and get the TSH results we are looking for.

    I am sorry so many of you are still going through the hell of it and hope that someday soon you too can celebrate a bit of good news from your doctors and relief from these harsh, harsh symptoms.

    All my best,
    Kairol

    PS – High five Tracy. I am glad you found a solution through Sandoz and are feeling better. As far as teenagers, sorry no pharmacist can help with that one!


  116. Amy Says:
    July 30th, 2013 at 6:19 AM

    I finally ran out of my Levoxyl last month, after four years on it and they finally got me stable with my dosage and my Endo puts me on levoxthyroxine for the temp fix. I’m taking 175mcg Monday-Friday and 350mcg on the weekends! I’m been on this crap for now for 4 weeks and feeling like a slug, I’m scheduled for blood work today so I will find out tomorrow if they will change my dosage. I have called and emailed my reps in Washington,DC to light a match under the mfg’s of Levoxyl. I’m sick and tired of being sick and tired! I workout an hour before work then work 10 hours a day and when I get home at night, all I want to do is sleep in my chair, hell there are times I want to sleep at my desk on lunch/breaks!! I want my Levoxyl and life back!!! People don’t understand what we are going through and how we feel. They just say suck it up and go on. They don’t realize what a Thryoid does for you and when you don’t have it messes with you. We can only push ourselves so much until our bodies shuts down. Will let you know how my results are tomorrow when I hear from my Endo.


  117. Bonnie Says:
    July 30th, 2013 at 3:36 PM

    Kairol : I’m happy that you got a great report on your TSH. I’m glad Synthroid is working for you. :)
    Do you think you will switch back to Levoxyl when it becomes available?

    Amy: I feel your pain with the levothyroxine issues and sympathize.
    I miss Levoxyl so badly. It’s been three months now without the medication I took for 10 years and that well feeling I had on it (my lifeline). I pray for everyone on these forums who are struggling switching over to another medication (myself included).

    I haven’t found anything as a replacement yet. I go around in a circle with the medications available and continue to have have adverse reactions. I try to stay with one and am either so jittery, and allergic responses to the chemicals in them, I can hardly stand it.

    I don’t know how long I’ll be in limbo with this, and I can’t help but to feel depressed, and weepy at times feeling like I will never get that well feeling back. Have done what I can do with contacting Pfizer, FDA, etc. I continue to pray for a miracle with Levoxyl’s return.

    I hope we all soon get our lives back on track.
    Blessings..


  118. Enchanted Seashells, Confessions of a Tugboat Captain's Wife Says:
    July 30th, 2013 at 5:30 PM

    I’m sorry to hear lots of you have not found a good replacement for levoxyl. I’ve been super pleased with the compounded prescription I’ve been using. Energy up, no aches and pains, fingers crossed this’ll keep working.


  119. Bonnie Says:
    July 30th, 2013 at 7:12 PM

    Enchanted seashells:

    What does your compound consist of?

    I had a compound made and it burned my eyes so badly (really effected my vision for hours), my arms and legs felt like they had lead weights in them they were so stiff, I had severe heartburn on and off (not much of an appetite), white, chalky, dry tongue, and itchy reddened skin from my esophagus down to my chest (and other areas). It was frightening.

    The compound pharmacist who compounded the T4, said it sounded like an intestinal allergic reaction. It was a hypoallergenic capsule in a veggie cap, and was not time release, but rapid release. I asked about the fillers and he said 60 mg of microcrystalline cellulose, and the levothyroxine. I also had upper intestinal pains later on leading to diarrhea. The chalky film on my tongue stuck around for awhile. I was afraid to keep taking it.

    That’s why I was asking about your compound, to see how I can improve or remedy adverse reactions should I try another compound. Thanks.


  120. Enchanted Seashells, Confessions of a Tugboat Captain's Wife Says:
    July 30th, 2013 at 7:24 PM

    Hi Bonnie, I’m not 100% sure I remember what he said, but I’m pretty sure it’s time release, not a vegan capsule, and I think also the methyl cellulose as filler. Here’s his info, name is Dieter, and he was very helpful, also called to see how I was responding to it, so that was good, too.
    Coast Compounding Pharmacy
    1838 S Coast Hwy
    (between Kelly St & Cassidy St)
    Oceanside, CA 92054
    (760) 433-6233
    compoundingpro.com


  121. Bonnie Says:
    July 30th, 2013 at 9:06 PM

    Thanks, and are you on a T4 only or a combination?


  122. Enchanted Seashells, Confessions of a Tugboat Captain's Wife Says:
    July 30th, 2013 at 9:18 PM

    T4 only right now but I need to be retested for T3 again. It’s so hard telling doctors HOW to do their job! Why are they so reluctant?


  123. reta Says:
    July 31st, 2013 at 7:24 AM

    it’ s nice to know I’m not the only one struggling with the Levoxyl shortage. After years of riding the roller coaster of my thyroid going from hypo to hyper and back and forth, I was put on Levoxyl and finally balanced out. Since the shortage, I have been taking generic Levothyroxine and after about a month I started feeling like I was taking speed pills; after a few days of feeling really out of control, sick, nausea, chills and feeling strung out, I went to get a blood test. still waiting for the results.
    Good luck everyone.
    Reta


  124. kat Says:
    July 31st, 2013 at 10:10 PM

    Dear All… thanks to all you for all the information, phone numbers but most important the true caring and support. Sometime in August I will start the Sandoz “levo” and just pray. Will continue to call my Senators, Representative and of course persist with Mr. Reid’s office. Kairol…so glad you are adjusting and feeling better. Good question…when levoxyl is available will we all go back? God Bless and again gratitude for this site.


  125. Bonnie Says:
    August 2nd, 2013 at 3:44 PM

    Good luck with your blood test Rita. Keep us updated.

    Kat-

    Good luck with Sandos brand, keep us updated.

    As far as myself, well it’s been very difficult.
    Instead of gaining wt, I’ve lost too much, down to 100 lbs, from 112. It’s a combination of being on and off medicine over three months, as well as the medicines that didn’t agree with my system (tried most of them I believe). I’m so allergic to so much in the way of chemicals in drugs that my road to adapting to another medication is a definite challenge.

    I haven’t been eating as well either with degrees of swallowing issues at times.

    I did want to mention that after calling everywhere to pharmacies in cities all over the state, that I was able to get a few Levoxyl in the strength I take. Fortunately, I found a few left in a pharmacy in Pa, near where my parents live. We are traveling north right now to visit with family and the pharmacy is in Pa, so my parents picked up the pills and are holding them for me till I pick them up tomorrow after we arrive there.
    Hoping this medicine will help me put on a little wt. and give me some balance on our visit with family over the next 10 days.

    I thank God for the few pills I could get and always PRAY Levoxyl becomes available again soon (before 2014).

    Take care everyone and continue to update and I will do the same.


  126. JoAnna Says:
    August 2nd, 2013 at 7:10 PM

    Getting very sick after trying 4 different kinds of other thyroid medicine.. Called a local CVS,they told me they had some of the levoxyl 100 mcg ,the strength I have taken for 13 years,BUT ! They cannot dispense them because of the recall…Go Figure !!!!!


  127. Bonnie Says:
    August 3rd, 2013 at 11:36 AM

    I’m so sorry Joanna. Keep calling around, and don’t give up.

    When your on a medication that adapts to your system with thyroid medication and its working for you, it shouldn’t have to be replaced with another one. I fully understand.

    We are all in this together. Continue to keep us updated how you are doing.
    I will be praying, as always that God will see us through this difficult time.


  128. Anonymous Says:
    August 4th, 2013 at 9:32 AM

    Absolutely same as all above. Frustrated and not feeling well after realizing Levoxyl was pulled. Now on Synthroid and having awful stomach aches. This is crazy.


  129. JoAnna Says:
    August 4th, 2013 at 4:55 PM

    numbers to call for Pfizer,still trying : so sick !

    Customer Service and Product Inquiries:
    1-800-TRY-FIRST (1-800-879-3477)
    Monday through Friday 8:00 a.m. to 8:00 p.m. EST

    Corporate Office:
    1-212-733-2323
    235 East 42nd Street
    New York, NY 10017


  130. Susan Says:
    August 5th, 2013 at 7:48 AM

    Hi everyone This blog is awesome. I will be seeing an endocrinologist this week as will soon be out of my Levoxyl. I currently take .88mcg 6 days a week and from listening to other people on this blog especially Leslie I am going to ask I be put on Sandoz levothroxine and see if this works. I am so dismayed have to switch to an unknown.

    Would appreciate comments from you all. God Bless all of you.


  131. Leslie Says:
    August 5th, 2013 at 11:10 AM

    Hi, Susan and everyone who has or will be trying the Sandoz brand levothyroxine. I had lab work done last week and my TSH was 1.98 and free T4 was 1.4. The TSH was a little low for me: I seem to feel better physically on 1.0 or less. I am still struggling but seem to feel better and have no side effects like while on Synthroid. Can’t remember if I related that I had switched back to my former endocrinologist and am so grateful to have done so. He suggested that I go up from 88 mcg every a.m. to 88 mcg six days a week and on Sunday (or the day of my choiced) take two 88 mcg tablets. I did double up on the 88 mcg yesterday. He had me schedule lab work to be done in 6 weeks. He told me not to worry and said that we would continue to do lab work on a frequent basis (which I don’t believe the other endo would have considered even if I had asked him) until I felt better. I told him that the Sandoz brand was the closest in inactive ingredients to Levoxyl that I could find. He said he had no idea which pharmacies stocked which generic brands. I assured him that I had done that hoemwork and knew which pharmacies in my area (Kansas City) stocked Sandoz on a regular basis and that I would keep up with any changes in that. He said to always check every time I got my prescription to make sure it was Sandoz, which I do anyway. Good luck to you, Susan and to everyone struggling. Keep us posted. My prayers are with you and everyone involved in this thyroid med struggle. I too am very grateful for this blog. It is a wonderful place for support and information.


  132. Leslie Says:
    August 5th, 2013 at 11:20 AM

    I want to add that my endo also said he would be happy to try the T4/T3 combination any time I would like to try it (I’m not attempting any other drastic change at this time b/c I cannot afford to take the risk–husband on hospice, extreme financial challenges, and I’m doing Physical Therapy for the next few months). This is such a change from when I first saw this excellent endo. He absolutely refused to try that combo instead of T4 only when I first saw him and for the year and a half I was with him the first time until my last appt, when I had already decided to go to this other highly recommended endo (who turned out not to be very thorough or open to discussion as I had expected) and after I had asked him to consider the T3T4 combo at every appt., citing research of its benefits for many patients. He had actually done research himself after I had kept on suggesting it to him and said he also had found evidence it had helped a subset of hypo and/or Hashi patients.

    So I want to encourage everyone having difficulties with doctors who won’t listen and won’t think outside the box to not give up of a doctor refuses your requests or doesn’t listen closely to you the first times you see him/her.

  133. Kairol Rosenthal
    Kairol Rosenthal Says:
    August 5th, 2013 at 12:05 PM

    REPLY TO SUSAN: I wish you the best of luck with your switch to the new medication. When I was writing my book Everything Changes, upon which this blog is based, I learned a few important things about online health conversations. Often, they take place between patients who are experiencing a difficulty of one kind or another and are seeking solutions and support. What online health care conversations usually don’t include are the examples of people who are doing extremely well and leading life as normal. Those people are usually off enjoying life rather than writing about! I take time to highlight this simply to say that what you might read on this thread of conversations are the comments of those of us who have had a hard time, are frustrated, and exhausted. I believe there must be hundreds of thousands of patients for whom the discontinuation of levoxyl and switch to another brand has not caused problems at all. I hope that you are one of those people and I wish you luck as you start your new meds.

    REPLY TO LESLIE: You make a great point about sticking with a doctor even if they at first are not willing to think outside the box. I think it is also important to note to everyone who is reading about switching thyroid medications and is concerned about their blood tests, we all come here with many different thyroid problems which are managed quite different from each other. I am a thyroid cancer patient and know that my doctor has different goals for my TSH numbers than he does for a patient with a different kind of disease. And, he doesn’t even pay attention to my T4 numbers. His opinions about different brands of medication and combinations of T3 and T4 may also vary from other doctors who are treating patients with different thyroid diseases. It is wonderful we can all share information here and hopefully use it to help each other out. Let’s also remember that we know very little about each other’s diagnoses and medical histories, so our doctors my have good reasons for rejecting or accepting ideas that we have heard from one another. I love these conversations. And, I think there is a lot of hard work we must each do to figure out how to make this information applicable (or maybe not) to our individual cases and conversations with our docs.
    Wishing everyone a stable and sane thyroid week!
    Best,
    Kairol


  134. Bonnie Says:
    August 5th, 2013 at 2:47 PM

    Unfortunately, this is sad. :(
    Traveling to PA, I had taken my last two Levoxyl pills that were leftover, and that I saved from my last refill three months ago (before the recall). I had no problems on the pills I had taken over the past few years.

    I picked up the pills that my parents had for me, and started taking them yesterday.
    Unfortunately, they look the same as my Levoxyl pills, but I am reacting differently to these.
    I’m not feeling very good on these pills. I felt like my throat was closing off yesterday morning (which was frightening) then when I felt hungry, I’d try to eat and everything was sticking to my tongue (unless it was wet like applesauce). That cotton tongue feeling. I felt so dried out and dehydrated all day and I had tightness in my jaws and teeth trying to eat later on. The food tasted super salty (like my tastebuds were off). Needless to say I haven’t been eating very well and we have been visiting family who I’ve filled in about the medication recall dilemma, since they wonder why I’m not chowing down delicious food.
    I’ve had anxiety attacks and some other unpleasant side effects as well.

    I am stumped why the pills are not reacting the same way. They expire in 2013, where my original bottle with refills expire in 2014. I called the pharmacy to ask and the recalled ones were sent back. Im assuming the fillers are different and I don’t know if I can tolerate these much longer (for reactions I’m having). I was so counting on getting relief from the pills, since I felt great on the ones I was originally taking for so long All I have is Synthroid with me and I was so hoping not to have to take that again (so allergic).

    I wonder if I’ll ever see my old Levoxyl back again. So tired of not feeling well and want to feel like my good old self again in this lifetime.

    I guess I’m just trying to understand how the same pill is reacting differently. What I wouldn’t give to go back three months ago and none of this had happened and this suffering we are all going through because if this recall never had to happen.


  135. Bonnie Says:
    August 5th, 2013 at 3:11 PM

    I am happy for those of you who are doing well on Sandoz brand. I may retry that again at a different dose, after I get home and see my endo. Maybe the dose I was on was simply too strong. I don’t know.
    I get tired (and afraid) of all the side bad effects I seem to experience (highly sensitive to medications).


  136. Susan Says:
    August 5th, 2013 at 5:57 PM

    I want to thank all who very diligently replied to my first time entry. All of you people are so informative and great.

    After I see my endocrinologist I will let you all know what she says.

    I will also let you know how I respond to Sandoz brand. I am located in Columbus Ohio and my pharmacist( at Kroger) said they could get the Sandoz brand in a day.

    God Bless You all.


  137. Mink Says:
    August 5th, 2013 at 7:50 PM

    I m posted my previos comments about Levoxyl, I was on Levoxyl 100 mcg so great blood test was allways tsh 2.5 for 14 years, with levoxyl shortage I was week on levothyroxine, had very bad allergy my doctor told me to stop using, gave me armour thyroid, I had chest pain nausea vomiting, and fatigue for 2 days on 60 mg , I stop that , doctor told me to stop using any medicine for 3 weeks to see how much medicine I would really need, after 3 week my tsh is 78. it went from 2.5 to 78.oo I was given tirosint and I was at ER from only 1 tablet, flushing, unable to move legs and arms, cramps all over my body. My doctor gave nature throid for about month I was using, expererince horrosble simptos, unable to walk, had nausea feeling like having heart attack, I though symptoms will go away once is adjusted and it never did, I could not walk. My blood test come back after 4 week 67. little bit better. But I was no longer walking I was in bed, unable to move legs or arms. had for 12 hours something like close enough to paralyze and waiting for mri. Last week I spoke to my doctor she gave me compound throid t4 19 and t3 4, very small dose. I was so afraid to try compound thyroid it just does not sound good, but imediattly after after 2 days 3rd I m out of bed no leg cramps, feeling relax no nausea, feel AMAZING!!!!! If someone decide to go to compound pharmacy it should be experienced your local pharmacy that is already checked and safe and your doctor can recomand best thing I have done in my life, and usually I was allways afraid to go to compound pharmacy, but Is saved me from going to Hospital, I will have my blood test done in 5 weeks.


  138. kat Says:
    August 5th, 2013 at 11:01 PM

    Dear Kairol, Bonnie and Leslie and everyone suffering thanks to Pfizer. I am a cancer survivor, a diabetic and basically an unhealthy individual for most of my life. Having my thyroid work with the levoxyl has been a blessing because of all the trouble I had with my thyroid until I started the levoxyl. I am planning to start the Sandoz “levo” soon. I am really scared because of the past and having to go to Cleveland Clinic. This blog is helping me get through this. Thanks Kairol and everyone for the support information.God-Bless and keep calling Pfizer and the FDA.


  139. Anonymous Says:
    August 6th, 2013 at 9:15 AM

    Levoxyl was recalled again for potency issues. That was in April or May of 2013. I was prescribed Generic thyroid and had major issues affecting just about everything and a new doctor who knew nothing about thyroid meds. I switched to another doctor who then put me on a lower dose of Synthroid, but having major major headaches, less “brain fog” though. I do want to sleep more than usual, general aches, especially lower back and neck. I had RAI 14 years ago and was muddling along on 100mcg of Levoxyl, but staying more or less steady with TSH. Frankly, I don’t think the doctors know anymore than I do. I just about at the end of my rope.


  140. Minka Says:
    August 7th, 2013 at 8:04 PM

    Called pfizer customer service they took all of my information, I told them how much levoxyl help me and everyone else what we have to go thru without levoxyl, they question me about my lab test and all details about levoxyl and for any reaction, They transfer me to medical team who also question me about levoxyl , and all reaction, I told them how great medicine was I would be willing even to take any old levoxyl regardless of recall as my blood test results were great.I ask them how soon it will be available what month exactly in 2014, or if there is anything that they can help to patients, they ask me for phone number all of my info. Couple days after they have their attorneys keep calling me asking if I would be willing to fill some papers for them they could not tell me exactly what it was for. I told them to stop calling and I don’t want to engage in any process or filling any papers I did ask them again about Levoxyl and will be available, they were not friendly they told me they are not once making medicine and I should contact my doctor


  141. Min Says:
    August 8th, 2013 at 8:42 PM

    My insurance helped me more they research to see if anywhere in usa you can buy levoxyl and they confirmed it was recalled across states. But they did advise to sign up on http://www.levoxyl.com to receive first updates


  142. Zana Says:
    August 9th, 2013 at 2:08 AM

    The main problem with using levothyroxine or synthroid as a substitute for levoxyl is the additives; acacia is extremely problematic. Don’t know why any of the pharmaceutical companies use this known allergent??

  143. Kairol Rosenthal
    Kairol Rosenthal Says:
    August 12th, 2013 at 7:07 AM

    Hi All,

    Thank you for keeping up such an active conversation with each other and sharing resources about how to get through the levoxyl recall. I read all comments on my blog and reply to many. Those that contain links, resources, medical and/or legal suggestions I research personally, check for accuracy, and respond to with additional information if needed. The comments on this thread containing legal and specific medial information (outside of simple personal first hand accounts) have become so prolific I have not been able to research them in a timely fashion. It is pretty amazing how dedicated you guys are and I want to encourage you to share ideas with each other, especially for advocacy. It makes more sense to me for the conversation about legal issues and detailed pharmaceutical recommendations to take place on a discussion board aka online forum. Those forums will give you greater ability than what I can offer here to organize, share unfiltered information, form specialized subgroups, and even private message each other. I think the best place for this might be http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/ or http://www.inspire.com/groups/thyroid-diseases/ The first is specifically for thyroid cancer patients and the second is for thyroid disease in general. Each of these forums already have information on them about the recall and lots of replies.

    You may have noticed that some messages posted on this thread have not appeared. I have culled those that were repeats, not understandable, or that I contain legal information I have not been able to yet research and respond to. Sorry that I cannot keep up with you guys! I think that using the forum will solve this problem.

    Keep up your good work and advocacy. And as always, feel free to contact me by sending an email via the “contact” tab above.

    Kairol


  144. Robin L Says:
    August 14th, 2013 at 10:56 PM

    I just found your blog. I, like many of you, was switched from Levoxyl to Levothyroxine. I take 100mcg daily. I am tired, stomach aches everyday and having heart palpitations. I feel fluttering, skipped beats and my heart races most of the day. When trying to sleep at night I feel my heart beat thumping in my throat. My PCP is off until Monday, August 20, 2013. Another physician at same clinic sent me in for a free T-4 test. It came back at 1.67. I’ve had the palpitation symptoms before, but always went away w/adjustments with Levoxyl. I’m also on triamterene (potassium sparing water pill. What do I do? Go down on Leothyroxine?


  145. Sandra Says:
    August 17th, 2013 at 5:16 PM

    Hello from France,
    Here in France we are lacking of Levothyrox (Lab : Merck Serano). We don’t know what’s happening with thyroid hormons. Do you have these hormons (even if it’s not your usual brand), or are they on shortage for all brands. Thank you for your help.
    Best regards
    Sandra


  146. Sandra Says:
    August 17th, 2013 at 5:20 PM

    I’m trying to understand the world situation…because here were are starting panicking…What’s the problem in USA ? (Here they say in the medi it’s because of a big order of levothyroxin coming from China)


  147. Julie Grayson Says:
    August 29th, 2013 at 12:18 AM

    After 11 to 12 years of Levoxyl and now the change, I am miserable. Barely care if I exist. And NO way any suicidal thoughts. They switched me to Synthroid first and my throat got so sore I could barely swallow. I had some old Levoxyl left, so used it a few days and throat cleared up. Then I went back on the Synthroid again as a test and same thing happened. I called endro Dr. and they changed to Levothyroxine and a blood test. Then they changed milligram after blood test. Then they changed it back to original milligram. My hair is falling out horribly and I told them but they are not concerned other than another blood test in 3 months. I used to sleep from 2 am to 10:30 am because I had worked 2nd shift all my life. Now I sleep from 4:30am or 5 until 1:30pm. I hate it, it’s crazy. I then take 1 or 2 naps after that, throughout the day. I let things go that I never would have before, no energy. I won’t leave the house unless I absolutely have to. I have to force myself to eat and can only really handle chicken noodle soup, my stomach hurts. I am worn out at the smallest task. I feel out of breath. It is a nightmare to feel that I could die from lack of a medication that helped me for so many years. I told the nurse on the phone everything and they act like it is nothing. I had Grave’s Disease in the beginning and have been on Levoxyl since I had the radioactive iodine around 2001. At what month in 2014 do they think it will be available? I don’t know if I will survive that long. I feel so slowed down, I am scared.


  148. kat Says:
    August 29th, 2013 at 10:05 PM

    Dear Julie…I realy can empathize with you. I have two weeks left on the levoxyl my Doctor gave me all his samples. Then I will try the Sandoz “levo.” The Pfizer “monsters” state that the availability of the levoxyl will not be until May 2014. I am scared too. God Bless you and all we can do is react and pray for the best. This actually is worse than my cancer…equal to my daily battle with the diabetes and terribly unfair. Our prayers will be answered.


  149. Julie Grayson Says:
    August 30th, 2013 at 1:49 AM

    I doubt it will be May. When they stopped Deramax that my dog needed for bladder cancer, they kept pushing the date farther and farther. I called all vets in area and no one had it. She was being treated at Purdue University though and they still had it, but was scared everyday it would run out. So I’m sorry to hear it will be as far away as May, knowing it could be changed to a further date or even never. This isn’t living, it is existing.


  150. Bonnie Says:
    August 30th, 2013 at 9:20 AM

    Kat, Julie and others here.

    I totally sympathize with everyone.
    For myself, I really have nothing more encouraging to report about except that I’m alive, and able to walk, talk and take nourishment (only not at a normal level like I had been a few months ago when I was still on Levoxyl).

    I had and have difficulties with every medication I’ve been given to take and I’m still not consistent, except that I’ve been taking a small amt. of Synthroid (at the strength I was taking with Levoxyl). I would gladly take half the pill but the side effects are crippling. I can barely walk when I take a quarter of the pill. Such tightness and stiffness, including numbness with burning under my skin. sleeping is becoming more difficult because I hurt physically. I do take a little sleeping medication which helps with some of the inflammation.
    I feel like the circulation in my muscles and my nervous system are effected greatly by these drugs. It’s a horrible way to feel, and our drug is unavailable.

    Honestly, I didn’t have these problems (aches snd pains like this) on Levoxyl, and I remember how well I felt, compared to now. It’s an ongoing struggle. Maybe at some point I will feel better then this, and I’ve been praying for Levoxyl’s return soon. I was hoping by January at least, but May 2014 is a long way off yet. Truly sad.

    Update on how you are all doing, and Kat, I hope you do well on Sandoz, unfortunately I had problems with it (after repeated tries). Many people on the other forum can also take this medicine, but for me the high pulse, headaches and dry heaves happens every time I try it, so I gave up, I would have loved for that to have worked for me.

    God Bless, and keep updating.


  151. Enchanted Seashells, Confessions of a Tugboat Captain's Wife Says:
    August 30th, 2013 at 9:23 AM

    I was unable to get the Sandoz cos the manufacturer said they were out of it for a week or so, did anyone else have that response? So I got another prescription filled by my compound pharmacy and I’m doing so good on that, I might not change. I’ve not felt this good in a really long time. No side effects, lots of energy, and I know they don’t have any chemical fillers or coloring.


  152. Sandra Says:
    August 31st, 2013 at 2:23 AM

    That’s is my question : if in the States you have a shortage of thyroid hormons from Pfizer and from Sandoz now, doesn’t it mean that there could be global shortage of any kind of thyroid hormnons? Generic products seem to have many side effects. But what will happen if there is no more any product for us…THe media say in France it’s because of a big demand from China…What will happen ? I’m anxious.


  153. kat Says:
    August 31st, 2013 at 10:50 PM

    Hi everyone…I really like this blog a lot. If you are having problems getting the Sandoz “levo”…I called Wal-Mart (I live in PA) and the pharmacist said he can order it overnight. Medicine Shop is where I get my medicines and got it filled within two to three days. I do not understand how Pfizer can make people who really need a medicine to wait so long. I have two attorney friends who will give me “free” advice . will call next week. Also, I thought about writing a letter to AARP. Also, the Secretary of the US Department of Health and Human Services, Kathleen Sebelius should be made aware of the problem and suffering. I am very idealistic and I know how much money the “big guys” wield in the political sphere.I wrote a letter to Oprah. What about Canadian Pharmacies? DO they have a “levoxyl” that mimes ours. I detest Pfizer but we have to keep positive and stick together. God Bless. Remember the “higher powers” can give miracles.


  154. kat Says:
    September 9th, 2013 at 9:59 PM

    Dear Kairol…I just wanted to see how you are feeling since you went back to the Synthroid. I am going to start the Sandoz next Monday and really hope it works. I see my Doctor this Friday and will get general blood work for my diabetes, cholesterol and thyroid. Will go back in a month after I start the Sandoz. I really want to thank you and everyone on this site for all the support and information. I am still very angry with Pfizer but am not scared of the Sandoz. Do you really think Pfizer is going to reformulate and wait until next May? Maybe we will all find something “else” and never have to go back to the levoxyl. It really was a good medicine. Take care and keep calling Pfizer(everyone).


  155. Julie Says:
    September 10th, 2013 at 1:47 PM

    The nurse called me today after I left another message about side effects of the levothyroxine. I asked if I would keep losing my hair until it was all gone and she said it was POSSIBLE. I was crying and they want me to get another blood test. She is under the impression that Levoxyl will never be back. I hope she is wrong. I am so depressed. Please, I hope she is wrong.


  156. Joanne Says:
    September 11th, 2013 at 12:04 PM

    after my surgery to remove my thyroid I was put on synthroid, had too many problems and couldn’t get regulated. So was put on Lavoxyl….been on it for 9 years,never any problems for 8 years and never had to change mls. Now dr put me on synthroid being as I can’t get Lavoxyl any longer….I’m back to having problems. Dr told me I’ll “adjust”…ha

  157. Kairol Rosenthal
    Kairol Rosenthal Says:
    September 11th, 2013 at 4:41 PM

    I am in contact with Sandoz. As soon as it is available to me, I will provide accurate and up to date information regarding their production of levothyroxine. Until then, keep your chins up. I have not seen anything on the FDA website regarding a shortage or discontinuation so that is a good sign. Additionally, I have seen nothing to substantiate the rumor that Pfizer is not going to resume production of levoxyl in 2014. Of course, the possibility is there that they will not. But, especially in these stressful and highly emotional times of thyroid hormones swinging every which way, I find it incredibly helpful to focus on the present and how we can best take care of ourselves right now. I am not usually a Polly Anna, and maybe it is only because I have had some recent success with synthroid, but I do want to keep you guys as positive and give you some hope. We will all get through this, it just might be hard for a while.

    Lots a love.

    Kairol


  158. Enchanted Seashells, Confessions of a Tugboat Captain's Wife Says:
    September 11th, 2013 at 4:44 PM

    I just got my Sandoz prescription sent to me. They obvs have it in stock now.


  159. Nancy Says:
    September 17th, 2013 at 12:32 PM

    I was on synthroid for five years and suffered from ups and downs, heart palpitations. The doctors tried to tell me I was having panic attacks. Then I switched to levoxyl almost 15 years ago and all my symptoms disappeared. I feel like a “normal” person every day. Now they have taken levoxyl off the market and I have tried several different drugs. The side effects were aweful. My new endocrinologist told me it was “psychosomatic”. I yelled at him in front of everyone in his office and told him he take my body over for just one day and see what it was like.


  160. Nancy Says:
    September 17th, 2013 at 12:33 PM

    I was on synthroid for five years and suffered from ups and downs, heart palpitations, etc. The doctors tried to tell me that I was having panic attacks. Then I switched to levoxyl almost 15 years ago and all my symptoms disappeared. I feel like a “normal” person every day. Now they have taken levoxyl off the market and I have tried several different drugs. The side effects were awful. My new endocrinologist told me it was “psychosomatic”. I yelled at him in front of everyone in his office and told him he take my body over for just one day and see what it was like. That made him rethink his “stupid” remark. I have come to the conclusion that when I run out of my current supply of levoxyl, I will not use any medication until it returns to the market.

  161. Kairol Rosenthal
    Kairol Rosenthal Says:
    September 19th, 2013 at 12:23 PM

    Hi Everyone,

    I have communicated with someone in the media department at Sandoz regarding the alleged shortage of Sandoz generic levothyroxine. They stated:

    ” I can confirm that we do currently manufacture levothyroxine and that we are supplying this product to the market without interruption.

    We are committed to making high-quality, affordable generic medicines available to patients in the US and around the world. If any of your readers have questions about Sandoz products, they can contact our Customer Support line by calling 1 (800) 525-8747.”

    Hurrah. One less thyroid drug to worry about.

    All my best,

    Kairol


  162. Nicole Says:
    October 30th, 2013 at 2:53 PM

    I really hope that Levoxyl will be available again in early 2014. Anyone has new info/update?


  163. sophie mae Says:
    November 7th, 2013 at 7:55 PM

    Your blog has been an inspiration to me. I do believe that Doc’s do not understand the complex symptoms of thyroid disorder. After many years finally went to very good endo doc… She got me sorted out, took two years…My metabolism was finally working, depression gone, dry skin and after gaining 40 lbs( never in my life had I had a weight problem) lost 25 lbs., finally walking, working and enjoying my life… Stopped the endo doc back to my 10 year doc and then Levoxyl discontinued.. My doctor immediately put me back on the generic levothyroxine…and here I am after all these years back where I started, gained 5 lbs., dry skin, depressed, not walking or enjoying life. I know the drill here and it does not work…Has she even read my chart or remembers that I went thru 2 years regaining my balance.. I do not believe she gets it.It’s the same exact drug. .Let’s give a big group hug to all our sisters in search of a normal life. Thank you, Kairo for this blog… Do not feel alone anymore. I will seek Sandoz.


  164. twiley Says:
    November 10th, 2013 at 10:05 PM

    I just stumbled on this blog. I, too, have been on Levoxyl for four years after having my thyroid out. I felt great from day 1! When I could no longer get Levoxyl in May I went on the Sandoz brand of levothyroxine. I feel lousy!!! Tinnitus, leg cramps, flush face Yuch! Along with all of you, I hope and pray that Levoxyl does come back in 2014!


  165. pauline Says:
    December 2nd, 2013 at 9:17 PM

    Hello everyone, I am new to this board but would just like to share my experience with Sandoz. It did seem like this was a viable option (after the levoxyl recall) and the minimal number of fillers, BUT – have not felt good on this medication. I remained on my “usual” dose of 75mcg for the first 2 months. TSH level at 1.70. My hair fell out like crazy. I had hyper-symptoms, i.e. dizziness, etc etc, so I dropped the dose to 50mcg (which I’m still on). still no change in symptoms, so I stopped taking ANYTHING 4 days ago. The sad reality is, I don’t even know HOW I’m supposed to feel anymore.


  166. JANE Says:
    December 12th, 2013 at 10:27 AM

    I HAVE BEEN ON LEVOXYL BRAND Name only for since 2005 felt great once I was put on this and not the generic brand …. I am so glad to have stumbled across this board. I too had to switch to synthroid… and have felt awful ever since. I am having night sweats, rapid heart rate, HAIR HAIR HAIR LOSS that is not stopping and I am in the normal range TSH !!!!!! I spoke to Fizer today and the cookie cutter who answered the phone told me Levoxyll will be back on Market during the First Quarter supposedly by End of February. I am not feeling confident this is the case… Outraged that Pfizer seems to care less about ME!!!


  167. Becky Says:
    January 8th, 2014 at 3:15 PM

    Pfizer told me that levoxyl will be in the warehouse for pharmacies to order on January 31. Expect a shortage. In the meantime I have been on tirosint. When I went to pick up my next refill they told me it is now $85 for 28 pills-$20 more than last time. I told them to keep it and asked the doc for sandoz generic. It is supposed to be the closest to levoxyl. There was a law suit between King and ALARA/sandoz (US operation for a company in Switzerland). King was concerned about losing a significant share of the market since the 2-are almost identical. At least I have something reasonable until levoxyl is available. Palpitations and anxiety can also happen when there is less thyroid in your system. I was undiagnosed for over 3years-(idiot for a doctor! So many visits and never ran even a CBC) during that time I had palps and thought I just needed to cough, hair loss &shortness of breath to mention a few. Some symptoms are the same with hypo & hyper.


  168. Bonnie Says:
    January 10th, 2014 at 5:32 PM

    For Becky:

    I called Pfizer this morning and asked about the end of January date for Levoxyl’s return and I was told sometime the first quarter of the year, anytime between Jan. and March 2014.

    I asked other questions but was not given any other information (which is frustrating and upsetting to not know for sure what us going on with Levoxyl).

    You also mentioned to expect shortages. When you talked to Pfizer did you talk to someone specifically who informed you better then the responses I’ve heard (as well as others who are getting the first quarter as a response).

    I myself have been without Levoxyl for 9 months and I have not felt well for one day while being without this life saving medicine. Trying to live without it has been the hardest thing I’ve ever had to go through and my thyroid health and overall health has suffered immensely. I am so very allergic to the other thyroid medications and so I haven’t been consistent because of all the adverse reactions. With my chemistry, Levoxyl works the best for me (was on it for 10 yrs.).

    I’m hanging on by a thread just waiting for this medicine to return. Any resources you can share would be appreciated and thanks so much.


  169. Becky Says:
    January 10th, 2014 at 6:58 PM

    I called 1800-438-1985…pretty certain that is he number I was given. I saved it so I can call back on the 31st of jan to follow up as suggested. She said when I call to get through the prompts choose option 2; then option 5. She said to expect a shortage. Since so many have been waiting for reman to start up again. I am on levo generic by sandoz first day today and actually feel better than on tirosint. When I was on levoxyl my T4 was 1.3 with 1.8 being the high. After being on Tirosint for six months my T4 was elevated to 1.6 in September. I was having periods of being overheated and I felt like there was probably tiredness related to too much T4….yesterday. Today I have not felt overheating. And I have had tons of energy. I also stopped drinking tap water especially with my thyroid pill in the morning. When I did that a few years ago my thyroid level started jumping up over The recommended amount of a maximum 1.8. I do my best not to have anything for the first hour. If I wake up at 5 o’clock in the morning I take the pill and then I get to sleep another hour and then I can have my coffee when I get up. My doctor and nurses were frantic because my levels were elevated when I stopped tap water. They Didn’t know that I stopped tapwater the first time but I let him know that that’s what I had done and why my levels were increasing. Aqua fina (reverse osmosis filtration) doesnt add minerals. Dasani does. Distilled water is great -especially in the coffee pot. There’s no build up that I have to clean up. Tapwater contains chlorine bromide fluoride… Give me a break. We are told to take her pill with nothing but water the first hour. Shouldn’t take any other medications or vitamins for the first four hours either.


  170. Becky Says:
    January 10th, 2014 at 7:08 PM

    I read an article yesterday that has interesting info about the bioavailability comparisons so you can see which appear to be the most effective http://www.medscape.com/viewarticle/544179


  171. Becky Says:
    January 10th, 2014 at 7:14 PM

    medscape.com/viewarticle/544179. Interesting article concerning comparative bioavailability further down in the article. This is only day 1 on the sandoz product but it feels right.


  172. Bonnie Says:
    January 10th, 2014 at 8:17 PM

    For Becky:

    That is the same number I called, option 2, then option 6.
    Option 6 is the medical information and pharmacy, and I have other numbers at Pfizer but they always tell me the same thing when I call. I could try option 5 next time I call but I’m not sure it will make any difference. I had been calling every few weeks to check on the status of Levoxyl.

    I was hoping for the end of January as well for its return, so if you hear anything to confirm that, please share. I can’t imagine when the medicine returns that there would be a shortage already (that doesn’t seem “fair” as we have been waiting for so long to have it back), I’ve already notified my pharmacy to order it soon, as I was planning on its return the end of this month.

    Meanwhile, good luck with Sandoz. I couldn’t tolerate that or Tirosent. This has been a long journey for many of us and we would like for the journey to end by just having our medicine back. I for one am counting on it.


  173. Becky Says:
    January 10th, 2014 at 11:06 PM

    My dr in 2006 started me on levoxyl. At the 6 week point I let him know I was almost out and he call in synthroid for me. I took it for 2days and each morning I had a leathery dried up tongue., developed a boil on my back and red spots under skin in my upper eye lids to name a few. It called the office and let them know what was happening. They made me come in. The nurse and dr then acted like I was off track. I let them know that I would like to have the drug of my choice. And they wrote the script for it. Jerks. I thought nothing of the change to synthroid-Until I had reactions. Hello… And drink purified water with your pill


  174. Bonnie Says:
    January 14th, 2014 at 9:27 AM

    I had contacted this drug shortage site (phone number is there) on occasion for updates. They update once a month and get their information from Pfizer. I wanted to share this information for those of you hanging in there for Levoxyl’s return (like myself).

    http://www.ashp.org/DrugShortages/Current/bulletin.aspx?id=1013

    I would still keep calling Pfizer periodically however. Pfizer has been saying the first quarter of the year. I am so ready for this medicine to be back so I can get my life and my thyroid health back on track. Other medications just haven’t been working out for me.

  175. Kairol Rosenthal
    Kairol Rosenthal Says:
    January 31st, 2014 at 11:03 AM

    Thank you for all of your comments regarding the levoxyl shortage. I called Pfizer today to follow up on the recent comments above regarding updates on manufacturing of levoxyl. Here is the information I learned through a phone conversation with a Pfizer representative. I will post this information again on Monday Feb. 3 as a new blog post where you can leave more comments and questions about any new information you have found as well. Thanks for all of your communication about this issue already. It is great that we can all help each other learn more about the status of getting levoxyl back on the shelves.

    Kairol

    * Pfizer states that levoxyl will resume manufacturing during the first quarter of 2014, meaning January, February, or March of 2014.

    * Pfizer has not yet resumed production of levoxyl.

    * When Pfizer resumes production of levoxyl, there is some lag time between the production and when it becomes available in a pharmacy. It must first go through the packaging and resale process.

    * Wholesalers must stock up on the product first before shipping it to pharmacies. Distribution is the role of the wholesalers and not of Pfizer, who is the manufacturer. Therefore, for example, Pfizer does not know whether CVS vs Walgreens will have the product first. However, the representative I spoke with said, “There should be no shortage issues once it is readily available.”


  176. Bonnie Says:
    January 31st, 2014 at 3:08 PM

    Thanks for the confirmation that Levoxyl will be coming back over the next few months. I feel like I’ve been waiting forever for it to come back, as many others who were taking Levoxyl would be feeling the same thing. I pray with all my heart they start producing Levoxyl over the next month so it can go through the process that is necessary before we see it back in our pharmacy.

    Thanks for posting this information Kairol.

  177. Kairol Rosenthal
    Kairol Rosenthal Says:
    January 31st, 2014 at 4:24 PM

    You are welcome Bonnie. After the shortage started I went on levothyroxine and had horrible side effects. I then took synthroid, which was no picnic the first two weeks, but then my body quickly adjusted and I will continue to stay on it even after levoxyl comes back on the market. I know that so many have not been as lucky as I have been. I understand what a big deal it is to be without levoxyl, and I hope for your sake and others that it arrives in pharmacies ASAP! Best, Kairol


  178. Becky Says:
    January 31st, 2014 at 4:57 PM

    I spoke to the pharmacy reps at Pfizer today and was told that it has been launched. I was advised to call my pharmacy to get them to work on getting it in stock. Or personally, I would think get your Dr to call it in.


  179. Becky Says:
    January 31st, 2014 at 5:12 PM

    My pharm said it will be available to ship to pharmacies during the month of February. I was told that at that point they can get it next day.


  180. Cinzia Says:
    February 11th, 2014 at 12:40 PM

    Hi Everyone..just read that Levoxyl is coming back March 3, 2014. I took Levoxyl for over 10 years. When they discontinued it last year, I too was very nervous about trying another thyroid brand. Had no choice and took Synthroid. I’ve been on it for almost a year now, and haven’t had a problem with it. I was told by a pharmacist that Synthroid was the “Gold” of thyroid medications. I do believe that the “fillers” of these thyroid meds do have adverse side effects for some people and NOT the active hormone in the medication. So will I switch again to Levoxyl???? I don’t think I will only because my body has gotten used to the Synthroid. I feel switching your body has to “switch” as well. After starting Synthroid, my doctor told me to take it for 6 weeks then get my blood levels tested to see how my body was adjusting to a new thyroid medication. My levels turned out okay and I had no choice but to stick with Synthroid. My insurance company will not pay for the Synthroid which makes me angry, but I believe they will pay for the Levoxyl. But do I want to put my body through another test again going back to Levoxyl? Honestly, I’m afraid to. I loved the Levoxyl and it works and worked for me for all those years. But the body changes as we get older and wonder if it doesn’t work for me like it did and my body is used to the Synthroid now? I think I’m going to stay with the Synthroid because I am really scared to change all over again, afraid of putting my thyroid through another adjusting.


  181. Bonnie Says:
    February 13th, 2014 at 9:32 AM

    I was able to get my Levoxyl about a week ago. I called the customer service number at Levoxyl.com after seeing that all strengths were available on the FDA drug shortage website. I wanted to verify the March 3rd date and I was told Levoxyl was finnished being produced and was shipped out to the wholesalers. Your pharmacy needs to call their wholesaler to order your Levoxyl. Last Monday my pharmacy couldn’t order it at first because their wholesaler didn’t have it, then on Wed. of last week I checked with my pharmacy and they could order it and I had it the next day.

    I’ve been back on Levoxyl for seven days now and am going through a readjustment period. I believe it will take a little time to feel as well as I had when I was well balanced a year ago before Levoxyl was taken off the market. The important thing is that I’m back on medication, trying to maintain consistency which I didn’t have for months, so hopefully now my thyroid health will improve. Right now the medicine feels a little strong to me because I weigh 15 lbs less then I did last year at this time. I’m hoping to put some wt back on as I’m balancing out. I will update in a few more days.

    Those of you who are waiting on Levoxyl in your area, call the number on the Levoxyl website and inquire about it. It’s puzzling how some are receiving it while others are not. The pharmacies may not be aware that Levoxyl is back on the market.

    Those of you on Synthroid or other thyroid medication, I’m happy for you that you have adjusted to another medication. This year has been a HARD year for everyone, and I pray this is the end of suffering for so many thyroid patients.

    God Bless You All!

    Love, Bonnie


  182. Becky Says:
    February 18th, 2014 at 12:55 AM

    Called my pharm today. They had 12 bottles 100 pills each of 112mcg at their warehouse. She ordered it today and will be here tomorrow. Now to get the doctor to call in a prescription…


  183. Nicole Says:
    February 20th, 2014 at 3:26 PM

    Thanks to all for sharing their experience with this forum. I have been checking this forum at times for the past few months and reading that Levoxyl was finally back on the market prompted me to call my doctor to refill my current substitute (sandoz) prescription back to Levoxyl. I also stopped by my pharmacy, and told them about Levoxyl. The pharmacy made a quick phone call to their warehouse or supplier (not sure who they called), hung the phone with them and told me that they will have my prescription ready tomorrow!
    I hope that you all will be able to switch back to levoxyl very soon. Wishing everyone the best. Thanks again.


  184. Sunrise Says:
    February 21st, 2014 at 6:06 AM

    Does the new Levoxyl seem a little stronger?


  185. Bonnie Says:
    February 22nd, 2014 at 2:57 PM

    For Sunrise and others who post on this blog:

    It is now day 16 for me on the new Levoxyl and I am still adjusting. After taking the first pill it seemed like it was very strong. I believe with the wt loss I had (almost 20 lbs) after the Levoxyl recall last year that this medicine appears stronger then it did in the past. I figured until I could put some wt. back on, the dose I’m taking may be too strong right now. I weighed 112 last year at this time and now I weigh between 96-98 lbs. I’m going to continue with this dose for a few weeks (it was the dose I was taking last year) then have labs done to see where I stand and how I’m feeling. I’m glad the medicine is finally back but I’m not bouncing back as fast as I hoped too. I’m having a few reactions, but I’ve been hypo for so long with not taking much of anything that it may take awhile before I’m feeling back to where I was last year at this time. Yes, the new Levoxyl feels much stronger to me but I’m hoping to adjust better as time goes on.

    Those of you who frequent this blog, please update on how you are doing on Levoxyl. It’s been a long year but I’m hopeful it will get better now that the medication is back and there is consistency with taking thyroid medication (in my case this is true).

    I’ll continue to update.
    God Bless, Bonnie


  186. Sunrise Says:
    February 22nd, 2014 at 5:57 PM

    Bonnie,
    You lost weight, I gained five pounds and the medication still seemed stronger. I was getting hyper symptoms. I lowered the dosage very slightly and I’m fine. My doctor has always told me it’s best if you hyper to lower the dose and then build up to a higher dose.



  187. Becky Says:
    March 1st, 2014 at 5:34 PM

    If you feel hyper symptoms, your hormones are balancing for the increased amount of t4. As t4 increases cortisol will slowly decrease. Until then you may feel the effect of slightly higher doses of each. But, if you were actually not taking much of anything…wow. Not good. I can definitely understand why you have to sqeeeeze t4 back into your system.-slowly. I went through that in ’07. Better with t4 alone than with armor! I Had blood drawn after being on sandoz for 2 months. My t4&t3 dropped below the middle of the road level (t4 low is 4.5 and high is 12.5. Mine was 7.5. Low for me. Gained 3lbs but no big deal. Clothes still fit.) I pick my levoxyl Monday.


  188. Sunrise Says:
    March 5th, 2014 at 1:33 AM

    Becky,
    I never went off the Levoxyl. When it was first recalled, I worked with my doctor and pharmacist and was able to get almost a years supply of Levoxyl. So I’ve continued to take it until mid February. When the new Levoxyl came back I began to take the same dose as before. I began having hyper symptoms. I lowered it slightly and I was fine for a while but now the hyper symptoms are back. I remember reading somewhere that one of the reasons some of the Levoxyl was recalled is because the dose was a little low.


  189. Becky Says:
    March 5th, 2014 at 8:03 PM

    I guess it works different for everyone. I was warmer with Sandoz but tired. my body temperature is 98-lower with Levoxyl -felt a little anxious, but Not tired. I bit off a very small chunk of sandoz about an hour ago and I feel warm now -I’m not tired. My temp is now 98.6. And feel no anxiety. I think I need to go from 112 to 125 mcg again. Heart rate is great. I basically know that when I get chilled easily or my fingers are cold.


  190. Leslie Says:
    March 30th, 2014 at 12:16 PM

    I’m so glad many are getting Levoxyl again. I visited my endo several weeks ago, told him I’d heard Levoxyl was back, and he readily agreed to prescribe it again. However, I went to 2 pharmacies here in Kansas City, Missouri, area (one of which was Walgreen’s); both pharms said they still showed Levoxyl as being “discontinued.”

    Have any of you found Levoxyl still unavailable at your local drug stores? I wonder if Pfizer is distributing it regionally at first.

    Thank you to any who might have an answer.

    I wish everyone the best on this thyroid med “journey.” I learn so much from this site and encourage and support each and every one us.


  191. Christa Says:
    March 30th, 2014 at 2:21 PM

    Hi
    Today I found these statements from others that have the same things happening to them as i have had.
    in 1998 i had surgery for Thyroid Cancer
    had been doing well on Levoxyl until i begun feeling ill.tired and depressed.
    I knew it had something to do with my Thyroid Medicine as before leaving Florida I had filled my prescription .then begun taking it a week later as we arrived in Maine.
    I knew something was wrong with the new prescription.
    Finally i went to see our Pharmacist in Maine
    He gave me a new prescription of Levoxil
    After taking this ,about 2 weeks later i felt ok again.
    I had to pay cash for these pills all summer,as the pills i got in florida were for 90 days.
    we called Pfizer to report about my getting sick
    we asked if there was a recall
    they said no.
    i wanted to know what i had been taking to make me ill.
    but received no help what so ever,
    My husband made many phone calls to speak with someone with knowledge about this
    but they gave us no help what so ever.
    I had not gone to report this to a doctor ,as we travel
    and my doctor was in Alabama.
    All i knew it had something to do with these pills.
    As i had been taking them for so many years.
    I felt deserted by this company.
    We received forms to fill out numerous times
    but never got information back,
    So you can think how i felt when i was informed about the closing of the Lab
    very un nerving and disappointing.
    I have been taking Synthroid.but am gaining weight.
    I have heart problems .have been going to the Mayo Clinic in FL
    and Brighams in Boston.
    I have Afib and Atrial Flutter for years
    So it is difficult holding down the heart spells and at the same time getting higher doses of Thyroid Med.as i should be on a bitt higher dose of Thyroid Med to prevent cancer of coming back,as in 1998 the surgeon left a very small amount of Thyroid tissue,

    Thank You all for writing and taking the time to listen to my experiences.
    Wish You all the best.


  192. Sue Says:
    April 27th, 2014 at 10:13 PM

    Bonnie and Kat, I believe we were all posting on another comment section on Mary Shomon’s March 31, 2013 newsletter which has disappeared. Many of us miss this already. Stacey and I wrote on Mary Shomon’s Facebook asking for her to provide a way for us to get back online to comment. I am glad to find you here and maybe Karen, too. Hope Mary Shomon will make this possible or that we can use this site for advice in the meantime. I am still taking the new Levoxyl side effects and all. I have some synthroid samples but have not tried due to a sinus infection. I seem to be reacting to the new fillers and had a lot of sinus drainage which became an infection. Hoping to try a double dose in half soon. I think my Blood pressure is still fine on Levoxyl and I don’t have the tummy issues I have had on other thyroid meds. Let’s all try to find each other and stay in touch!


  193. cabro Says:
    April 28th, 2014 at 3:41 AM

    Hi, Bonnie, Kat and Sue! I found you on the Facebook page, too! I’m so glad I found you. Please friend me on FB when you see my posts on Mary’s site. I hope Karen will come over, too! How upsetting to see all of her hard work just obliterated in a moment.
    I’m having hot flashes now, and that is truly a deal breaker for me. :( Never had any before TT. I don’t see my endo for 2-1/2 more weeks.
    Sue – I sent you a friend request. Stacey posted there, too, and I hope she joins us here. Kat – I’m soooo glad you’re here. And Bonnie, I knew that was you writing when I found this site late last night. I’m hoping you are still thriving on Levoxyl!


  194. sophie mae Says:
    April 29th, 2014 at 8:55 PM

    Kairo, another thank you for starting this blog… So reassuring to read and compare symptoms with other folks. Back on Levoxyl but can only get in 50 so take twice a day. Apparently, they are so backlogged not available in 100′s. Doesn’t feel quite normal yet but at least I am beginning the journey back as long as it is the same composition as before.. 1 month so far better than levothoroxine back for blood work in 3 weeks so we shall see. My metabolism is sluggish or suspended. Hope it will balance out. Best to all seeking the balance and energy
    of life.

  195. Kairol Rosenthal
    Kairol Rosenthal Says:
    April 29th, 2014 at 10:30 PM

    I am glad you are finding my blog a useful place to connect. I cannot believe it has been a year already since the levoxyl debacle began. I have confidence that we will find our ways back to some sort of usual or predictable thyroid existence, though it might look different than before.


  196. ruthie Says:
    April 30th, 2014 at 5:50 PM

    hi , I always could not take synthroid , did good on levoxyl until they reformulated all of them even armour about 10 yrs ago I cough a lot and weeze by accident I found I am feel better off of them but as you all know I have to go back on , I have also noticed a lot of meds were refoumalated since then and I am having trouble now with all even prednisone . do any of you know what herbs would be same as what they use to make thyroid medsi cant keep going off them and then back on
    thank you for any help anyone can be


  197. Char Says:
    May 28th, 2014 at 12:07 AM

    I have been feeling horrible since they took Levoxyl off the market. I tried the Levoxithyrine again and knew the generic never worked for me and it didn’t work this time either; Synthroid made me too hyper when I was first diagnosed as hypothyroid, so I was put on Levoxyl and felt great for many years. Now that they brought back the Levoxyl, is it me, or is it not working?? Every muscle in my body is stiff and aches. I am gaining weight (which I don’t do) My joints all hurt and I am getting worse by the day. I can hardly get through a day of work. I am fatigued as well. I am seeing my doctor tomorrow to find out what is going on. If anyone else is not responding well to the new Levoxyl I would like to know that it’s not just me! Thank you for any insight!


  198. kat Says:
    May 28th, 2014 at 2:23 PM

    Dear Char, Kairol and Everyone going through the levoxyl regrouping. Kairol your statement of how we have to adapt to a new thyroid existence is so true. I started back on the levoxyl…the early part of February. My thyroid (TSH) levels were underactive …8.0. I got blood work done in April and my TSH levels were 3.8. Prior to the recall of the levoxyl my levels always ran about 1.3. I am scheduled for blood work the end of June. I really believed that by the second dose of the levoxyl I would be the old me. Boy was I wrong. Char, I shared many of the symptoms you are experiencing. It was terrible. The longer I am on the medicine the more normal I am beginning to feel. I called Pfizer three times and was told that the levoxyl had not been changed. I am not a Chemist to challenge them. However, I am starting to feel like the “old” me…Chatty, Energetic, and Re-involved with life. Good luck to everyone going through another thyroid journey. Thanks again Kairol for allowing people to express their feelings on this blog.


  199. Anonymous Says:
    July 29th, 2014 at 11:16 PM

    As a physician and someone who has gone from Hashimoto’s thyroiditis to papillary thyroid cancer to having a complete thyroidectomy and radiation I can add my insight…
    1) There are a few medications out there that generic and brand are not equivocal. One is synthroid, another Wellbutrin, and some of the other antidepressants. There are a few reasons for this: 1) the quality controls on the generics are not as stringent as the brand who had to go through much more stricter testing. Therefore you may be given the same dose but feel very different on each as one may be overall more potent than the other.
    2) Each company uses it’s own binder or filler in the pill. Some may have an allergy to this binder, some may not metabolize it the same. again, this can affect your overall health.

    2) if your doctor is “hearing” you but not listening to you get another doctor. For those docs who have never had a chronic disease or who have been in the business too long to remember what is what like to be a patient that is not a medical professional it is hard for them to understand just how sensitive (and unique) each person can be to the formularies. With medicine becoming “cookie cutter” and checkboxes, it is easy to forget that each person is a unique being that reacts differently than the next. So if you say a med is not working, and they are not willing to make adjustments, or they are not really getting what your saying then get another opinion.
    3) everyone feels better at a different TSH level- I feel better under 1. I have patients who come in at 3 and feel fine testing your t4 and t3, tbg, etc is important if your TSH is normal but you are not feeling right….t4 is the inactive hormone roaming around…t3 is the active. Your TSH is inversely proportional to your T4+T3. So you can have a normal TSH but still not have enough active hormone Available. Anyone with hypothyroidism can be prone to adrenal insufficiency…. Your thyroid is the gas in your car …without we don’t make proteins, carry nerve impulses correctly, metabolize efficiently, etc this affects EVERY system in your body and mind. If your TSH is climbing and you get a stressor (bad situation, infection, trauma, etc to your system it can cause a rare but high mortality reaction called myxedema coma. So this is why getting your thyroid checked every 6 months is needed to make sure you are still on the right dose.

    Thyroid pills have a about a week half life so this why we can calculate out and say take this much on these days and this much on another..cause we are averaging your total dose over the week.

    Anyways, just ought I would add to the convo.
    Always make sure you are seeing a physician you trust and listens!

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