I get tons of emails from thyroid cancer (and other thyroid patients) wondering how to best handle starting new thyroid medication or changing doses of thyroid medication. These helpful hints are based on my own experiences as well as those of other thyroid cancer patients I met on the road while writing my book Everything Changes.
Remember, I’m not a doc and this is non-medical information. What worked for me also might not work for you. This isn’t a doctrine or manifesto. These are just some ideas for you to consider. They are presented in three sections:
1. Communicate with your doc about your levels
2. Get clear with yourself
3. Create a self-care plan
PART I: COMMUNICATE WITH YOUR DOC ABOUT YOUR LEVELS
1. Know what your doctor’s goals are.
Have a focused conversation with your doctor in which you understand what their ideal goals are for your TSH levels, why this is their target number, and what they base this decision upon.
Patients with different kinds of thyroid disease have different target goals for their hormone levels. Traditionally, thyroid cancer patients have been kept extremely hyperthyroid as a long-term treatment goal (in other words very low TSH). The thinking is that the lower the TSH, the less stimulation of thyroid activity, and hopefully the less opportunity for renegade cancerous thyroid tissue to grow. How hyper a patient should be might vary from doctor to doctor. Some endocrinologists on the forefront of thyroid cancer research are beginning to toy with the idea that maybe patients need to be kept hyperthyroid but not uncomfortably so.
Regardless of where your doctor’s approach falls on the spectrum of how low to go with your TSH, make sure you understand what their goal is so you are not banging your head against the wall with miscommunication about your lab numbers and symptoms.
2. Aim for a rational conversation with your doc about your symptoms.
Thyroid cancer patients are hands down the most emotional cancer patients I meet. Some of us are weepy, exhausted, amp-ed up, and anxious due to our hormone levels. These states of mind can make for doctor appointment train wrecks. Here’s a remedy:
When you are calm and focused type a list of your symptoms, followed by the questions: a.) Are these symptoms normal for someone with my TSH level? b.) Would changing my medication have any baring on the symptoms? c.) Would you recommend changing my med level - why or why not? Hand this symptoms and questions list to your doctor at the top of your appointment. Also, if you tend to get emotional when talking about your symptoms, consider having a friend accompany you and do the talking.
Here’s what not to do: Do not go into your endocrinology appointments weeping about your symptoms, asking your doc to take them away, or demanding your medication be changed. I’ve learned that none of these methods work too well.
PART II: GET CLEAR WITH YOURSELF
3. Make peace with your situation.
Sometimes your doctor is not going to be able to adjust your meds in a way that will make you feel better. That sucks. It can be a very slow process accepting this reality. But once you accept the limitations of what your doctor can do, you can begin to explore practical ways in which you can help yourself. (Wow, that sounds so hokey, but hey – it’s true.)
I’m not saying love your disease, I’m not even telling you to be positive. I’m just saying be real about the fact that you have some symptoms that might have to accompany the medication you take and you might have to get crafty about how to manage them in your life.
4. Give yourself time.
Hormonal thyroid states can sometimes make life seem so extremely intense. You might feel that what you are experiencing now is going to last forever. And yes, it may take a while for things to simmer down. So put a bracket, a set of parenthesis, around this time in your life. This is your time to adjust to your thyroid medication, to your new hormonal state of mind, to your disease. During this time you are going to have to find new ways to tame your mind, to preserve your energy, to think clearly, to have a somewhat normal feeling body. This will not happen in a week, it might not happen in a month, and it could take more than a year until you begin to feel like yourself. And you might not feel like your old self. You might feel like a different, new self.
PART III: CREATE A SELF-CARE PLAN
5. Identify your problems and brainstorm solutions.
Make a clear list about the things that are hard for you since you began your medication. When I began thyroid medication I felt extreme anxiety, brain fog and forgetfulness, and like my energy was crap. I wasn’t tired so much as wired. I had hair loss, hot flashes, and weight loss.
I have not erased the problems, but I have found ways to live my life comfortably despite these problems. I made the following changes over the course of months, some even years. They have made a huge difference in how I feel. They are night and day from how I used to live my life. I hope these ideas jumpstart you into thinking about crafty ways you can respond to your own symptoms. Remember this is trial and error.
1. Reduce your drama. I’ve ended energy sucking friendships. I limit my contact with friend and family who are a handful.
2. Trim down your calendar. I say ‘no’ more often than I say ‘yes’. I do ¼ the amount of socializing I used to.
3. Spend more alone time relaxing. I give my brain a rest by settling into long fiction books, zoning out on design blogs, and watching Law and Order.
4. Improve your mental self-esteem. My brain fog changed my identity. It made me feel stupid. It took a few years for me to turn this situation around. Read more about this in my New York Times post ‘When Cancer Muddles The Mind‘.
5. Declutter your physical space. If you have brain fog, come up with systems for streamlining and organizing your keys, you bag, your to-do lists, and for managing important information.
6. Sleep more restfully. My mind was going so fast I couldn’t get deep, restful sleep. There are tons of tricks out there for this. I eventually visited my general practitioner and got a prescription for xanax. While addictive for some, it has not been for me, and works like a charm.
7. Address anxiety. If you have anxiety, get real about taming it so it does not take control of your life. There are so many approaches for this including exercise, talk therapy, taking anti-anxiety medication.
8. Anticipate and respond to physical changes. Physical changes are so varied. Here’s how I’ve responded to some of mine:
I’ve sweat a lot more since starting thyroid medication. I now own cotton sweaters instead of wool, dress in layers, and do a ton more wash, which means I budget a lot more time to do laundry.
My hair has thinned. I’ve experimented with shampoos and haircuts. I’ve also started to wear more lipstick so if I’m feeling crappy about my hair when I look in the mirror, I see some other sparkle that makes me feel good about my appearance.
I’ve lost a ton of weight. I look scary skinny sometimes. I consciously try to eat more food, which sometimes helps and sometimes does not. I’ve started wearing more high heels because I figure if I’m doing to look like a waif I might as well try to look like a sexy one!
Please comment below to share your challenges and successes with adjusting to thyroid medications. I’d love to hear from you. (I’m not big on promoting natural thyroid hormone - plenty of other sites for that - so please no comments on it here.)
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
April 7th, 2011 at 11:56 AM
This very topic is interesting to me… when people ask how I am doing, I am always at a loss of what to say. Okay, could be better, but do they really want to hear I feel like sh!t.
I had been on 900 mcg of Synthroid, and 200mcg of Lyothyrine since August 2009, that when I finally got to a point where my heart couldn’t take it, they had to drop me to 600mcg of Synthroid and lay off the Lyothyrine. I still hear all the time, that things will simmer down, or calm down. I am okay with the crazy hormonones, and try to deal with side effects the best I can.
So it is always good to hear that there are others, unfortunately, dealing with similar issues. Thanks for the article, came at a good time this morning, when I was feeling like maybe I need to go home and take a nap… and I think I should, or catch up on some tv shows. I know sometimes taking care of ourselves is the hardest part.
Marti
April 7th, 2011 at 1:29 PM
Thanks for sharing this great information, Kairol. One of the first pieces of advice I received after being diagnosed was from a professor who had family members with thyroid disease. She told me that it can take a very long time to find the right dose of thyroid meds. At the time, that didn’t mean that much to me because I was so hyper-focused on CANCER. But she was so right. It took my endo and I two years to find the right combination and doses of meds.
Like you, Kairol, just because my TSH is now where it’s supposed to be (very low) doesn’t mean I feel good all the time. I don’t. I also lost a lot of weight and felt gross. To try to put on some weight, I started eating more and also started lifting weights (light lifting) to add some muscle mass. The combination of those two things really helped me get back to a more comfortable weight.
I also struggle with insomnia. I went many nights without sleep before I was convinced to talk with my doctor about it and ask for some help. He and I discussed it and he prescribed me Ambien CR. LIFE CHANGING. He doesn’t want me to have to take it every night, but agrees that with such a low TSH, insomnia is a symptom we have to deal with realistically.
One thing that has really worked for me is to ditch the fear of inconveniencing my doctor and his staff if I need to call. That’s their job, to take care of their patients. If someone feels like their medicine needs changing, I encourage them to call their doctor. Doctors don’t have dosing down to an exact science, so if you think you might need your levels checked, call your doctor! If it’s been 4-6 weeks since a medicine change and you’re not feeling better (or if you start feeling worse), call your doctor.
Thanks for writing this article. :)
Joanna
April 7th, 2011 at 2:31 PM
When I was hyperthyroid, I had increased hunger yet decreased appetite, diarrhea, palpitations, nervous sensations, and night sweats. What was most frustrating to me was that the symptoms seemed to lag by 1-2 months at least from what the previous TSH reading was. So I had to learn extreme patience with each Synthroid dose change. I remember it was exactly 4 wks AFTER my TSH was supposedly improved to 0.3 (from 0.03-0.1 range), before I started to feel a little more “normal.” It really took 3-6 months before I felt “adjusted” to my “new normal” TSH of 0.3-0.5 (I can’t imagine having to live at a TSH of <0.1, like many thyca pts have to! -luckily my pathology was low-risk enough that my goal TSH is 0.1-0.5, not <0.1). Anyway, one tactic I used was to eat more frequent smaller meals, which I still do to this day. I still don't feel my digestion is quite the same as before, but it helps to have a regular eating pattern.
April 7th, 2011 at 5:19 PM
I’m one of the ones who has been tortured by horrific side effects of thyroid hormone replacements and by underlying effects of Grave’s Disease. It would be nice if the doctors cared one way or the other. But, they don’t.
April 8th, 2011 at 8:41 AM
I needed to read this today!
Thank you….it made me cry and laugh at the same time. My TSH is being kept around .07 and I can feel it-memory issues, brain fog, hair loss, feeling overwhelmed more easily, wired but tired at the same time and weight gain. It’s a nightmare some days and I feel like I’m going crazy. Even though I’m technically hyper, I have hypo symptoms.
My endo is wonderful just lowered my dose of levothyroxine a little to see if that helps. I take 125mcg 6 days a week and 67.5 one day a week. The funny thing to me is that I now take less thyroid hormone post TT than I did before surgery when I was hypo with Hashimoto’s. The other hormonal issue is that RAI fried my ovaries and I’m going through menopause as well at age 42. I just started taking estrogen, and that has helped tremendously with insomnia and hot flashes. I figured I was in for some trouble when my endo said I was a “hormonal mess”!
While I had experienced problems keeping my TSH stable before, I never realized how much more difficult it would be now. Before thyca, I had periods of feeling normal. Now I forget what normal is and am trying to figure out what my new normal is. I don’t like it yet and some days can get really upset. I know it can/will hopefully get better, and I just have to readjust.
Thanks for writing this-I love the way you outlined strategies and tips, and I’ll be able to use some of them.
April 8th, 2011 at 10:32 AM
My situation is somewhat different - I became hypothyroid after radiation tx to the neck and chest for lymphoma - but I think we share many of the same issues.
It is very hard to manage the symptoms and consistently feel good. I have made two separate appointments with my doctor to discuss my TSH levels and medication dosage, and he’s always been very willing to listen and adjust the dose… but I continue to feel underdosed a lot of the time: fat, sluggish and stupid. It’s horrible.
I’ve also had to struggle with early menopause, aging parents and a crazy work situation; I love my job but it demands a very high level of cognitive functioning and creative energy, and with my hormonal situation plus some of the permanent physical and mental limitations from cancer tx… well, let’s just say it’s extremely challenging.
I’ve gotten a better handle on it in recent years, mostly by using some of the strategies Kairol has shared. I pace myself each day, keep lists and set priorities to avoid feeling overwhelmed.
I say “no” to a lot of things, mostly social. In fact I have very little social life left anymore. I try to relish the few occasions when I do go out, and view the rest of it as what’s necessary right now to keep me sane and healthy.
I also try to eat well - fresh, quality foods, no soda or junk. I go to bed on time. I build in some “down” time each day when I can just relax and not have to think too much.
The biggest thing I’ve learned is not to beat myself up too much over some of the permanent changes in my life. It is what it is. Even though it’s not what it used to be, it’s still pretty good most of the time.
April 8th, 2011 at 1:45 PM
Thanks for all of your comments. Here are somethings that leapt out at me:
1. I found especially useful Joanna’s comment about exercise - which I do entirely too little of. Even when I’m feeling low on energy, exercise does tend to make me feel more energized rather than more exhausted. Having been a dancer prior to my life as a cancer patient, I have a real love-hate relationship to exercise. (Fodder for a new post perhaps.) But I find that even if I do something simple like stretching for ten minutes, I do have more energy.
2. Perrin’s comment about food jumped out at me too. I don’t eat much junk food or drink pop (aka soda!) nor do I drink any caffeine. I never have. So guess that is a possible advantage I take for granted.
When people are feeling crappy from serious illnesses, I think it is easy to become enticed by life overhauling diets - become vegan, eat only raw foods, brown rice and vinegar fasts. But there is such a middle ground of experimentation that could be useful as well, like trying to cut caffeine intake in half and seeing if it makes you feel better. Thyroid medication can induce such extreme mental and emotional states; I find it best to try to craft remedies that are not equally extreme but are instead gentle, gradual, progressive.
3. Mweelin talked about having hypo symptoms when she is technically hyper. I’m glad to see I’m not alone in this! It is confusing as hell, but I have just come to realize that my symptom list isn’t going to fit into the tidy columns of hyper and hypo.
4. Lastly, Perrin’s comment: “The biggest thing I’ve learned is not to beat myself up too much over some of the permanent changes in my life. It is what it is.” It is crazy that we would beat ourselves up for the side effects of our diseases and the medications we take. It is like pouring vinegar into our wounds. But I’ve been there myself too. Coming to terms with the way my brain now functions is one of the biggest challenges I’ve had to overcome in regard to my cancer. It still daunts me from time to time. But over time, I have insisted on finding a new relationship to my deficits, one that doesn’t make me feel like an underdog, but rather a victor. This struggle has been profound.
April 12th, 2011 at 12:46 AM
Hey K,
The big part the jumped out for me was communcation. In my case that was the huge thing you taught me was to communicate to my doctors. They are not mindreaders they are my Doctors and getting levels under control is real 2 way street that both Dr and Survivor have to work together. They recently lowered me to 200 instead of the 274 i was just on. My sleep is now getting better and it is just awesome. weight, I have packed on thePONDS and can’t seem to get it undercintrol i am praying with this latest adjustment and a little walking that i can get this also undercontrol….
thanks again for another awesome read!!!
April 12th, 2011 at 10:44 AM
I am a 53 year old woman, who’s had Cancer, four times, and three types. So, I’m guessing it could be said I’m lucky, but I am not.
I’m sick of being sick and I do not have time for it. I took their Chemo, and I did their tests, and here I am, in pain and hurting inside, too. Inside, because of all my family, and the time I do not get to spend with them. I’m a Mother, I’m a Grand Mother to six children, and one is on her way. I pray I get to see her, before God takes me home. Thank you for allowing me this time.
April 12th, 2011 at 2:40 PM
I really apprecriate the bit about sweating and dressing in layers. I am a chronic “sweater” since I was first diagnosed w/thyca in 2001. Nothing has changed, still sweaty. Lol!
April 12th, 2011 at 3:43 PM
Hi Jon: Fantastic that you are sleeping better. A good night sleep is golden. For me, sleep is a free (minus the cost of the occasional xanax Rx!) way to revise my entire mental outlook and physical well being. Never to be underestimated!
Hello Anonymous - 53: Cancer is no picnic and it sounds like your experience with it has been nothing short of hell. I ache for what you have gone through. I too hope you live to see grandbaby number seven.
Though my blog and book are directed towards 20 and 30-somethings, I have received emails from readers of all ages who are able to relate and find meaning. Hopefully some of the posts on here will resonate with you. Please feel free to contact me if there is any way I can be of help to you. Hang in there. I’m thinking of you!
Hi Fellow Sweater: I recently read a tip from a person who works in the costume department in a theater. They spray a 50/50 mixture of vodka and water onto the pits of costumes that cannot be easily laundered. Supposedly it works like a charm in removing sweat odor. I have not tried it but plan before hand washing delicate sweaters. How’s that for airing my dirty laundry on my blog?
April 23rd, 2011 at 11:47 PM
thank you for posting this! i am a mess right now and of course don’t feel like it will ever get better. 1 year into complete thyroid removal, adjusting the meds, not sleeping, feeling like some days i just wanna pull the cover over my head…and somedays i do just that. i’m on the lid right now, thyrogen injections monday and tuesday (today is saturday) RAI on wednesday and scan on friday. last level was .002…did i say i’m miserable yet? today i just want to open a can of soup and eat it with for real crackers…oh..6 months prior to my thyroid removal, i had a complete hysterectomy…i’m 45 now. after they discovered i had thyroid cancer, my dr. said “too bad you didn’t know about this before you had your hysterectomy…you may not have had to have a hysterectomy…”…or something along those lines…anyway, i’m miserable right now, but i do find comfort in knowing that i am not alone and that i’m not crazy…the brain fog, yeah that’s me…can’t remember anything..just plain ole tired…:(
April 24th, 2011 at 8:03 AM
Hang in there Jackie. You are in the thick of it now and things will, will, will get better. Glad you read this post on a day when you needed it. And please, give your doc a smack from me for the hysterectomy comment!
April 25th, 2011 at 8:13 PM
I seem to go on a roller coaster post thyca between hyper and hypo thyroid, and like others have mentioned, the symptoms for me mimic eachother so I can no longer tell what I am. Need bloodwork for that, so we currently do it every 6 weeks to stay on top of it. Right now my TSH is .48 - “Nice and low as my endo says.” Ooops, the only problem is that I have epilepsy and my seizure activity tends to increase when my TSH gets too low. My neurologist is ultimately the one in charge of my treatment — it was she who said: no more hyperthyroid for you! So I gently remind my endo. And decide whether to adjust or to wait for it to shift back on it’s own. We decide together, but I always respect and ask for his thoughts.
I also take sleeping pills which in no way do I feel bad about.
I personally feel best at a TSH of about 2 which is far from the recommended post thyca but the recommended has more risks for me so we treat me as an individual.
I do take armour thyroid, because the synthetic stuff was even harder to regulate for me. That was my neuro’s idea as well.
There are plenty of doctors who will treat you as a person and not as a number. But I am also lucky that I live in a city with a lot of options.
For those of you currently suffering, I hope it gets better soon.
June 26th, 2011 at 3:23 PM
I’m just curious how many out there have gone on anti-anxiety / antidepressant meds since being treated for their thyroid cancer? At one of my recent Endo check-ups, my Endo was essentially suggesting I consider a medication like Zoloft b/c she sensed that I had too much anxiety either directly or indirectly related to trying to keep the TSH suppressed. Meanwhile, although I admit I have anxiety re: my health issues, I do NOT feel like I have excessive anxiety with other aspects of my life. And I do feel less motivation and less pleasure in doing (active) things I used to like to do, but I feel like most of it is b/c my muscles don’t feel as strong as they used to, and I know I will feel extremely fatigued and even get muscle cramps etc. after trying to do even minimal exercise now (which is even more frustrating b/c I want to try to lose some weight). [I think a lot of my neuromuscular problems stem from hypoparathyroidism, which I had as a complication from my thyroid surgery.] And so I find that depressing, yes. But does that mean I really need to consider going on an antidepressant?! Sorry for the rant. Part of me feels like I should seriously try an antidepressant, but most of me feels like I really don’t want to — even though my PCP even assured me not to feel like there’s a stigma to taking things like Zoloft. Has anyone else struggled with this type of ‘decision’?
July 2nd, 2011 at 4:09 PM
Kim…I just wanted to say that in dealing with health issues, it’s okay to feel anxious and/or worried about them. This is tough stuff. Honestly ask yourself: Is this a healthy amount of anxiety for you? Are you able to feel anxious and then move on with your day or is this anxiety preventing you from living the best life you can live? After much deliberation, I began taking an anti-depressant because no matter what I had tried, I couldn’t move forward. If it didn’t work, I didn’t have to keep taking it. But it did help! And once things were better, I went off of the drug and was still ok. The drug gave me the boost I needed to get through the rough patch. There are lots of tools for helping ourselves: changes in diet, exercise, medication, meditation, etc. I hope you find something that works for you.
October 16th, 2011 at 1:37 PM
I am so grateful for this site! I had Thyroid cancer 12 yrs ago, I was 21 yrs old with an 8 month old. All these yrs people haven’t understood why I get tired or lose weight then gain weight. They assume since I am “cancer free” I am normal. It is so comforting to know that I am not alone in these day to day struggles of fatigue, brain fog and hyper/hypo symptoms. I was also diagnosed with Mono earlier this year and it really took its toll on my body and thyroid levels. I am thankful to finally have an Endo that listens to me and doesn’t just treat my labs. Thank y’all for the understanding!! :)
August 13th, 2012 at 12:39 PM
I’m not a thyroid cancer patient, I have Hashimoto’s and on full replacement Levoxyl. But I am finding this blog very helpful to me. I had been significantly overmedicated for 1 year and coming down from it for 9 months now. It took that long. There were alot of brain adjustments I can tell you that.
Looking forward to reading more of your blog. Thank you for starting it up.
August 23rd, 2012 at 6:39 PM
I had my thyroid removed a month ago. Im on 125mc thyroid meds. Im beginning to feel tired and weak. Im having trouble walking. The calcium pills have caused severe constipation. The med I take is Synthroid I have gained some weight.
October 28th, 2012 at 11:40 AM
I have been diagnosed Hypo for about 4 years now. I went to my OBGYN thinking I was Menopausal (I was 43 at the time). It turns out my thyroid seemed to not be working at all. I am on 150mcg Levothyroxin and it seems to be working fine for me….other than the brain fog. My husband jokes that I am getting Alzheimer’s because I am so forgetful. I can live with that. But over the last three months my thyroid has been producing cysts…to the point my neck looks major swollen and lumpy. My ENT has removed four already, but they grow back quickly. He has opted to remove 1/2 of my thyroid; my surgery is next Friday. My concern is will I need to go through more medication adjustments? It was such a nightmare trying to adjust the meds….I went from sleeping 20 hours a day to not sleeping at all, sweating, losing weight, losing hair, and major brain fog. Now my only symptoms are slight brain fog and the unfortunate weight gain. I appreciate your blog and will be communicating with all of my doctors first thing tomorrow morning. You’re right, they are not mind readers!
November 5th, 2012 at 8:02 AM
Hello I am 63 years old, and 7 years ago I had my thyroids removed as I was diagnosed with nodules. The dosage that I am on is 75 micrograms of Levothyroxine and I do have blood tests every six months. I feel fine but the only problem is that my hair is thinning especially on the crown of my sculp. Could this be because of the thyroxine I am taking. Thanks
December 3rd, 2012 at 7:44 PM
Hi there,
I had my thyroid removed 2 months ago I had 2 large tumors growing at an alarming rate, it was not cancer…I am on 150mcg Levothyroxin.. when I fist started to take it I felt wonderful.. but now this last couple of weeks I am feeling terrible… very anxious, racing heart, brain fog, the list goes on. I had blood work done 2 weeks ago and my tsh is 0.09. so my doctor has me skipping one day a week of Levothyroxin for 6 weeks in hopes that my tsh rises. not sure how long that takes? but I am grateful for this site… THANK YOU!!!!
December 3rd, 2012 at 10:59 PM
Carjam,
I too am glad you found my blog. It can really take a while to adjust to new medications and get them to the right place. .09 is extremely low. I’m .02 and am familiar with so many of the symptoms you listed. It is a process. Hold tight and keep communicating with your doctor. It sounds like you have one who listens to you and is responsive to adjustment needs.
Best,
Kairol
February 7th, 2013 at 9:32 PM
I had thyroid cancer in 2003 and had it completely removed with follow up RAI and have been clear ever since :) About 4months ago I started having bad headaches and had just started with a new PCP who thought my TSH might be high so he had me tested and determined it was. I can’t remember what the level was. He also switched me from Synthroid to Levothyroxine, which my pocketbook was thankful for. He lowered me from 225mcg to 200, then to 175 and then to 150 and now he wants me to skip one dose a week. I’m currently at .064. I’m not sure what to make of all of this. I’ve started gaining weight and I’m more tired so I feel like my dose is too low. I’ve made an appt with my regular endo, and probably should have told her about what’s been going on to begin with, hopefully she’s not mad at me. Does anyone else have experience switching from synthroid to levothyroxine? Does anyone think .064 is too low? Happy to find this site. Thank you.
February 8th, 2013 at 1:30 AM
Seattle,
I too am glad you found this site. And, I’m happy you have been cancer free for ten years. It is great your PCP is so attentive though I agree it makes sense to check with your endo too.
I also want to give you ThyCa as another resource. It is the most trusted thyroid cancer organization around. They have a wonderful online support group for thyroid cancer patients. http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/ If you do a search there my guess is you will probably find in the archives tons of conversations about the issue of switching from synthroid to levothyroxine. (I personally have only ever been on levothyroxine so cannot compare.) You will probably find lots of comments as well on what different patients’ doctors consider an ideal TSH level.
Hang in there with the new symptoms and side effects you are experiencing. That roller coast is never fun.
All my best,
Kairol
February 14th, 2013 at 8:03 PM
I have been taking 25 synthroid for about 2 years..
My Dr just uped it to 50 because of my blood test.
I worked myself up within a weeks time by taking one 25 and 1/2 of 25.. after a week I went to the 50… This is day 5 of the 50..
I started feeling a bit “anxious” again but I am wondering if this is just because I get anxious about med changes or does a slight increase in dose make you anxious ??
Ouestion is: Am I making myself anxious or is it the slight increase in my synthroid and will it “ajust” itself in time??
Thanks
February 14th, 2013 at 9:58 PM
Hi Penny,
I really feel for you. This catch -22 is so common for me. Is the medication making me anxious or am I just anxious about changes in my medication? I would ask your doctor. Anxiety is an awful thing to deal with and I think the more information you have the more you can hopefully put your mind at ease. Either way, I hope you feel some relief soon!
Kairol
February 20th, 2013 at 2:01 PM
I’m so glad I found this. I’ve been trying to convince my doctor that although I’m better [lucky me] I’m still not on the right dose - brain fog - and we need to use the narrower / modern range of 0.3 to 3.0 but I might as well be talking to myself.
Reading your other commenters experiences, I think I’ll just have to admit defeat and find a doctor who will listen.
Thanks for the inspiration and support.
April 11th, 2013 at 2:30 AM
I’m 25 and recently just had a cancerous nodule removed from my thyroid, and I also have Hashimotos disease. I was only diagnosed not even one year ago. I just began taking brand name Synthroid instead of the generic brand. I hope to start feeling better soon. I try working out to alleviate the symptoms i’ve been dealing with, however I just end up so easily prone to exhaustion. My goal is to make diet and working out a major routine.
I’m glad we’re all in this together.
November 12th, 2013 at 11:49 AM
I’m 46 and had total thyroidectomy 3 yrs ago. Non-cancerous. Here are the things I have learned for myself during my medication roller coaster. Please note: I am not a doctor and have had no medical training whatsoever. I am simply sharing my personal experience. It has helped me so much to read stories online to know that I’m not alone - no matter what my Dr’s tried to tell me. So here’s what I’ve learned about myself:
1. Adjust my meds SLOWLY. Very very slowly. Every adjustment (up or down) causes me bad insomnia and anxiety that is strongest in the mornings. Literally even a change of 3-5mcg of Synthroid will cause these symptoms for me. Yes, I’ve found that since I’m human and not a robot my body prefers 153mcgs of Synthroid. Yes, I have to cut my pills into specks.
2. EVERY time I switch thyroid meds or adjust one I get side effects. Every single time! Even a tiny amount such as 5 mcgs of Synthroid. And, the bigger the switch in dosage or a new brand the worse the symptoms and the longer they last.
But, the good news for me is that the side effects of a change in dosage or brand always go away for me. Sometimes it takes 3-4 months but having gone through this 4 times now I know that mine will go away so I just grit my teeth and get through them.
For the insomnia I have things next to my bed that I can work on during the 3-4 hour awake periods such as a book, games on my phone, or my tablet to surf the web. I also found that a 1/2 of a muscle relaxant at bedtime will sometimes help me sleep through the night. I discovered this after I pulled my back out and I’m careful not to take it more than two - three nights per week during my adjustment period.
For the anxiety - I avoid the morning coffee. I pace and wring my hands, tap my foot, rock back and forth in the shower etc… or literally do jumping jacks in the bedroom. Constant movement seems to help me. I also constantly remind myself that it always goes away for me by noon AND after the adjustment period. Knowing it will pass that day or within months seems to help me personally from escalating into panic. But, we’re all different.
3. For me, absorbtion of the meds makes a huge difference. If I absorb more or less day in and day out then my dosage is not stable and therefore I experience side effects. I’ve learned to religiously wait one hour (not the 30mins.) before eating. I avoid the calcium and iron for 4 hours, and follow the food guidelines on the Synthroid website - I even avoid walnuts.
4. I have also learned that I am not a number. I am an individual and my dosage, emotional, hormonal, and physical needs, etc… are my own and they change from time to time. My reactions to medications are my own. My time needed to adjust to a dosage change or a brand change are my own. And, so are my choices in Doctors. I found one that doesn’t treat me like a number, and doesn’t treat my numbers like the only gauge of my health.
Again, I am not a medical professional but am just sharing my personal story. Thank you all for sharing yours, here and on other sites, so that I could navigate this roller coaster knowing that I am not alone. Blessings to all of you.
February 8th, 2014 at 5:43 PM
I really appreciate all the comments. I, too, had a total TT in Sept 2013 with a full neck dissectation-nine hour surgery-and was told I had a very sick and mostly dead thyroid for years( wondering how I was functioning!-barely!!!) anyway, I really appreciate Anonymous’ comments on dosing. I, too, have severe reactions to every dose increase so this last one, I decided to cut it in crumbs and try too take a crumb a day. I still get brain fog and chills and headaches and muscle aches and severe dizziness but to hear your story that it will settle down gives me hope. I like that you now take 153! I will probably need some odd number too:). Thanks for this blog too….
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November 5th, 2014 at 7:57 PM
I really appreciate the comments-especially Anonymous from last Nov. As this really sings to me. Every small dose change affects me. I feel hypo and hyper at times which is not great.
My tsh is .07 free t4 1.5 and free t3 3.2 right now. Have severe anxiety. But is it menopausal or something else? Endo does not even know right now.
Anyone else in this predicament. I am in levoxyl 112 one day a week and 118 6 days a week. I jumped 6mcgs per week in the last four weeks and Endo would probably like me to jump again..but I get major brain fog, confusion, dizziness, the chills, flu like. Thoughts anyone?
November 21st, 2014 at 1:20 AM
I was on 50mcg of synthroid for 7 years and in April went to the endocrinologist because of fatigue. My tsh was tested and found to be 5.9. She increased me to 75 mcg and tested me 6 weeks later to find the tsh rose to 6.83. She increased it again and found my tsh level went down to 2.4…but that isn’t an optimal range in the lab and she said since my husband and I are trying to get pregnant soon it needs to be optimal. The problem is my anxiety has gotten worse with each increase. I’m not sure if it is the levothyroxine adjustment or if I need to seek out a shrink. I’ve battled agoraphobia my whole life but the last 3 years were amazing and I led a normal life. Starting with that first dose change I noticed anxiety attacks popping up and now I’m basically housebound. Can anyone offer suggestions?
Thanks
July 6th, 2015 at 9:27 AM
I was diagnosed with Hashimoto’s a little over a year ago and my endo started me out on 50mcg of Synthroid but my TSH levels started rising again so they upped my dosage to 75mcg in January. Lately my fatigue has returned along with the mood swings, low libido, brain fog and just an overall sense of being miserable. I had some blood tests with my family doc to see if these were caused by something else but everything, including TSH came back where it should be so now he wants me to try anti-anxiety/anti-depressant meds to see if that helps. Thoughts? I just want to feel human again .
July 6th, 2015 at 12:58 PM
Dear Erin,
I am sorry you have to deal with the myriad side effects that can sometimes accompany thyroid issues and thyroid supplements. First of all, know that you are not alone. I have had lots of patients write to me with similar complaints. And, it sounds like you are being extremely thorough and smart in how you investigate next steps. I have absolutely heard of patients who have taken anti-depressants/anti-anxiety meds to help combat some of the side effects you are mentioning. If you and your doctor decide that is the route you want to take, perhaps they can start you on a very low dose so you can monitor your current symptoms as well as any side effects you may feel from the new meds. Regarding brain fog, I have experienced a lot of it and over the years developed tricks for coping with it. It is still frustrating but does not throw me for as big of a loop as it used to. Hang in there!
Kairol
July 9th, 2015 at 10:37 PM
I had a TT a little over two years ago. I have been “sick” since then. Muscles ache, feet hurt so bad I can hardly walk, headaches, Alzheimer’s type behavior, sweating, pacing, sleeping, getting thin, getting fat, depression, you name it. And NO ONE EVER MENTIONED THESE THINGS HAD ANYTHING TO DO WITH THYROID!!!
I kid you not. My PCP noticed the lump in my thyroid, an ENT did the TT, and put me on levothyroxine. NO ONE ever mentioned seeing an endocrinologist, or side effects, or ANYTHING! Every Dr visit that I had with an illness ‘complaint’ was feebly diagnosed as maybe fibromyalgia, or unspecified back pain, or insomnia, or I was eating too much, etc., etc. Always trying to shove anti-depressants down my throat but I said I’m a lot of things, but not clinically depressed! I had many, many truly suicidal moments.
I just found this blog tonight while surfing the web having just found out about levothyroxine side effects. I am so ANGRY and relieved at the same time. I don’t even know where to start. I want to shout from the rooftops, I want to explain to my family, I want them all to read all this, I want to explain things to the friends I used to have. I’m just sitting here in tears. I can’t believe my wonderful Dr. probably didn’t even know enough about thyroid to even be treating me. I live in a small town but this is inexcusable!
I know this is a rant but I’m horrified that there are probably others like me out there. I’m a college educated woman in her fifties, I research everything and consider myself well informed, but if was somehow given the info that levothyroxine was a no brainier. My symptoms came on slowly enough that I didn’t connect my “illnesses” with the levo.
Thank you for this blog, this info, this community. I hardly know where to start. Well, besides bloodwork and a board certified Endocrinologist .
July 27th, 2015 at 4:06 AM
Hi All! I had my thyroid removed 14 years ago due to cancer. I never thought it would be so hard to get the correct dose! Things that are helping me in this journey:
1) A standing TSH order from my doc. This allows me to get my bloodwork done every 6 weeks if needed without having to call the office and beg.
2) Taking my pills in the middle of the night. I set my alarm. This way I don’t have to worry about interference from food, coffee, etc. When evaluating my roller coaster levels this also takes the factor of how I take it off the table when talking with my doc.
3) Hyperthyroid symptoms for me mimic hypo. I gain weight (due to the fact I’m starving all the time),have brain fog, and extreme fatigue. I often think I’m hypo due to the fact I’m so tired and always napping. My theory is that even though I’m sleeping a lot it is an extremely light sleep and not restorative. The lack of real sleep can trigger migraines.
4) Insomnia can be a sign of hypo. I’ve heard your levels can be so low that your body gives a shot of adrenaline at night just to keep itself going…leading to frequent waking.
5) I often “crash” either when I’m hypo or hyper. I won’t feel great for weeks and then suddenly have severe symptoms and can barely function. Again…the advantage of a standing order as I dont have to navigate the doctor’s office when I can barely talk.
6) My TSH often lags behind my symptoms by a week or two. If I feel I’m off but my TSH doesn’t reflect that I still go back in 4 weeks later. My TSH usually reflects what I’m feeling by that time.
7) Know your disease and be your own advocate! When I had my kids I stayed on top of my levels and checked my levels every 6-12 weeks depending on the stage of the pregnancy. Most OBs only check once or twice even if they know your history. This would have had devestaging results for my kids as I needed to up my dose several times!
8) Consider celiacs for inconsistent levels. If your gut is damaged you won’t absorb your meds well. If I’m still having issues in another 6 months going gluten free is my next step. I’m still in the post baby stage so I’m hoping that is cause of my crazy levels!
Hope this helps! It isn’t an easy road
January 21st, 2016 at 11:51 PM
My sister was first hypo and then they found cancer. Removed her cancer and she is doing well now. They told me to be tested which I did (1 week before my wedding) and I was found to be hypo as well. levels were checked multiple times with increase of synthroid. 1st time was 4 then 4.59 and then now it read 5.14 as my levels. I am confused as my meds went from 25mcg to 50 and now 75 mcg. Why on earth are my levels going the wrong direction. Weigh levels have gone up and down but not drastic. (This all started this last Nov.) I will be going in for an ultrasound in the next few weeks. And in 8-12 weeks they will be checking my levels again….kinda want the levels to be checked sooner.
We are planning on going on our honeymoon in June and I would love to have the levels “normal” so we can try and start a family.
So I have also asked my husband and boss (whom I work closely with every week day) to keep me in check if I seem different. (Fogginess, sluggish, anxiety) as I feel I might not notice as much. I actually have 3 jobs (2 are part time) and the jobs do not stress me out too much but I just know I would not beable to notice as much as they would.
I am thankful for this article as nobody has told me it might take awhile to get my levels to be where they need to be. Thanks…I will not hold my breath on June now.
But has anyone here had the numbers go in the opposite direction like that before as the meds change?!?
Newbie to all of this as some of you are here…..so glad this is here. Thanks ladies and Kairol!
February 4th, 2016 at 9:04 AM
Hi everyone
It is nice to find places where you can read about individuals that are struggling with similar issues and feel a sense of unity in that.
For me, my thyroid condition apparently began when I was age 5, (I am now 47). My Mother told me that it was noticed that I wasn’t growing or gaining weight, and from there, it was said that my thyroid wasn’t working at all, (Doctor said I would have been a dwarf) So the medication was begun, and at that time I was living in my home country of NZ, the medication was called Thyroxine over there, but I am not sure of the dosage they started me on.
What I do remember, (still have the letters) is around the age of 12 I started having night terrors and hyper symptoms, so they decided to reduce the amount of Thyroxine to 100mcg per day, (or .001g) as I remember from the bottle!! I have been on that dosage since, but am sure that at differing times of life, they should have monitored me more closely and perhaps put the dosage down a little more as I remember suffering miscarriages, severe PMT, and panic attacks/anxiety/mild depressions my whole life.
Now I am 47, and went through menopause already, (last period was Christmas 2011)and it has been a struggle to remember to take my meds regularly. Hence, my levels are low from recent tests, so the Doc has advised me to take extra a couple of days per week to get my levels back up again.
What works against me, is that I work for myself, have NO time off, early starts, split shifts most days, and struggle with constant fatigue after arriving home from work in the first part of the day, (usually from 5.00am-noon). I crave all the wrong foods, and have no extra energy to exercise or do much else with my day apart from work, which is highly frustrating. I do try to stick to healthy eating, but each day my aims go out the window as I am ravenous for all the wrong stuff.
What can I do? Please help!!
February 4th, 2016 at 9:49 AM
Robyn, I am sorry you are having such a hard go of it. It can be really challenging to establish a routine and take care of yourself when memory and lethargy get in the way. I would try to come up with systems, start small, and be forgiving of yourself. Consistency with taking thyroid medication is key. I recommend finding a system that works for your timetable and your physical home set up. Set an alarm that will go off daily, keep your pills in the same location. Put them in a days of the week pill strip. Have water nearby. I take mine the first thing in the AM before I get out of bed. I have a pill strip on the night stand. I make sure I have a glass of water next to the pills each night before I go to sleep. If you need, set two alarms if one won’t do the trick. As far as exercise, just try to raise your heart rate for five minutes each day. Turn on music and dance or do simple aerobics in the kitchen or living room. Don’t worry about it being the same time every day. You have to start with something small and attainable and build from there. Best of luck!
February 27th, 2016 at 11:38 AM
Hi,
I’m grateful for your creating this website and forum for those of us struggling with issues of the thyroid. I had a TT in April of 2014 and it took almost 12 months to get the range from hyper to normal. I had Grave’s Disease and was not a long term candidate for control of it with meds. I was within a normal range for a number of months of 2015 and felt great. However, in Sept of 2015, the TSH went to 5.4 and even after raising the Synthroid dosage from half of a 137 mcg up to 75 mcg, it jumped to 11 in October. They put me on 88 mcg and when it was time to follow up, they recommended a delay in testing due to an antibiotic I’d taken that could alter results. Just tested again and am at .15 on TSH. They didn’t test Free T4 this month but they did the previous two times and it was within normal range. My question is this - I read that TSH rises in Winter and can drop in warmer months. Is it possible for this to occur even after a TT? I don’t completely understand the process and have searched and searched for an answer to that. If so, perhaps we just assume that a slight increase or decrease may be necessary at times the seasons change? Also, after reading the comments here, I see that I need to be more diligent to be exact on the time I take my meds. I do take in the early morning hours to keep food or other meds/supplements from interfering but I may take it at 2, 4 or 5 a.m. I’m guessing that even that much time difference may not be wise? Thanks again so much!!
March 9th, 2016 at 8:49 PM
thank you.
i have only just started this journey. i am just three weeks past the second operation to remove my entire thyroid, (taking out the first half of it confirmed follicular cancer stage 2) just three weeks of thyroxine. i have yet to see an endocrinologist. i will have the radioactive iodine treatment in the not too distant future. i am reading all i can, of course. :)
i have found your advice here to be the first really helpful, practical, calm advice i have read so far. i will be taking a lot of your words with me as i go forward. i will probably be re-visiting this page so i can remember them. :)
June 26th, 2017 at 8:51 AM
HI, Wow I cannot thank you enough for writing this. I have felt so awful these past two weeks. The meds have stabilized my thyroid and I have lost the weight I needed to. I now believe I am over medicated. I have rushing thoughts, HOT flashes, insomnia & very jittery. I actually thought I was having a nervous breakdown. Reading this made me feel so much better. It is good to know I am not alone. Just wanted to thank you so very much!