Swinging TSH

I am 48 years old with no symptoms of menopause. I had been taking my usual dose of 200mcg Levothyroxine when over time I became more and more anxious and was able to get less and less sleep. At first I was treated for anxiety but when we double checked my TSH levels they were low as well at 0.01. After lowering my dose to 175 mcg, TSH still remained low so we decided to stop taking it altogether so we can do a thyroid scan, which requires about 4 weeks of not taking any thyroid replacement. However, after about 3 weeks, when TSH was checked, it was 84. It was decided that I did not need a thyroid scan because most likely I don't have a thyroid function. So I restarted my levothyroxine at an even lower dose and rechecked TSH which was again below normal. During this entire time, T3 and T4 are normal. We lowered my dose again and I will need to be tested again in about two weeks, but I feel like my TSH is dropping still. What would be a reason for such quick fluctuation. I was very surprised to see the TSH to be 84 after only 3 weeks and that it dropped again so quickly on a lowered dose in two weeks. Any suggestions? Agi

52 Replies

  • I cannot help at all but I want to be sure I am reading correct. It was 84 not .84 right?

    Mine was high at 11, I cannot imagine 84! Ah but wait we have different measures in the USA than they do in UK. Are you UK?

  • Yes. 84. US. But my big issue is the quick fluctuation from too low to too high and back. 11 is high too. But I still felt better on 84 than on 0.01.

  • Mine is controlled now at about 2. I take levothyroxine. The numbers are okay but the symptoms still show up. I don't know much but I do know there are things such as hashimotos and other things that could be problematic for some thyroid troubles. Someone will write and address your issue soon I am sure.

  • Thank you. :).

  • :)

  • Agi,

    Sorry to hear you are still feeling unwell and what strange results.

    I have not heard of anyone stopping thyroid hormone replacement in order to do a thyroid scan. I would have thought this to be very destructive to your health. Your Levo dose is large so no wonder your TSH shot up high .... whilst your thyroid hormones levels remained balanced throughout ? ? ...

    To get a better picture of your thyroid function you need to have FT3 tested. Many members use private labs- link below. The TSH is not a reliable marker for how your thyroid is functioning and can be influenced by many things.

    Have you had sex hormones tested? Do you have gut issues such as leaky gut and gut dysbiosis which may be inhibiting absorption ? Have you had nutrients and iron levels checked ? Are thyroid antibodies managed ? Do you eat a gluten free diet ?

    As you appear to have added more & more T4 in an effort to keep TSH low, you might have build up some sort of cell resistance meaning no matter how much T4 you take, it won't make you feel any better until all other factors are addressed. You could try reducing the T4 dose drastically and adding some T3 but this would require supervision incase Reverse T3 has built to massive proportions and adverse reactions are felt.

    Have you had any pituitary investigations ? A pituitary adenoma is a tumor that might excrete large amounts of TSH or pituitary resistance when it doesn't recognise a normal amount of thyroid hormone so goes on producing excess TSH. Although these sound unlikely as medicating thyroid hormone replacement has previously been successful in controlling TSH.

    Anxiety can be down to low thyroid hormone and adrenal issues caused by years of mismanaged hypothyroidism. Supplementing selenium not only helps with T4-T3 conversion but has been proven to reduce thyroid antibodies TPOAb.


    Selenium reduces TPOAb.



    Private labs testing


  • Radd, one of my doctors wanted me to stop Levo for 6 weeks to have a thyroid scan! I refused. I checked with the clinic, and they said you cannot do the type of scan he wanted when you're taking thyroid hormone replacement. But, I think he was just clutching at straws because he knew nothing about thyroid and couldn't understand why I was still soooooo ill when my TSH was only 9.5!!!

  • i wasnt asked to stop levo before a scan and iam sure the outcome wouldnt have been any different any-way.

  • I think there may be different types of scan.

  • Gosh gg .... drastic and extreme. ! ! ..

    I wonder what type of scan it is.

  • No idea. I refused it! Stupid man said I wouldn't even notice not taking Levo for 6 weeks! A lot he knew!!!

  • Yea, complete knob head. I had a knob head endo years ago who took me off levo for two weeks, by 10 days I was in a terrible terrible state. Almost unconscious with adrenaline gushing out across my stomach area like hot water. Jolting me to stay awake. I swelled up like a balloon to. My Tsh was 98 but I felt like I was at deaths door and was rushed to hospital and given t3, injection.

    So no I wouldn't ever stop. Ever.

  • 9.5 that's not good no wonder you felt ill , that's some dr lol

  • Oh, I know! But I was so ignorant in those days. I had to threaten violence to get him to refer me to an endo, who sent him a letter telling him the errors of his ways! lol

  • Possibly you were on too much levothyroxine for quite a while. This can down regulate the hypothalamic pituitary thyroid axis which in plain English means your TSH becomes too low for given thyroid hormone levels. This may or may not eventually correct itself. The consequence is your doctors need to pay more attention to your fT4 and fT3 than the TSH figure. They also need to pay close attention to your symptoms.

  • Your reply sounds very interesting. Would you be able to elaborate some more on how "downrelugation" affects things? I had, for months had issues with insomnia before we discovered how low the TSH was. So I am sure I had been hyperthyroid for a while. I could not sleep and I had lost 15 lbs. At first I was treated for anxiety and was given depression drugs and sleeping pills and I was sent to a psychiatrist. Its been almost 6 months now that those symptoms started, so if the body starts doing weird stuff after being hyperthyroid for a long time, I could possibility having effects of that on me now. And what do you mean "this may or may not correct itself?" I look forward to further exploring your answer. Thank you. Agi

  • The TSH response becomes blunted, the TSH is not as high as it should be. The insomnia and weight loss are consistent with hyperthyroidism. Once you reduce your levothyroxine you should be back to how you were before the hyperthyroidism. Sometimes the TSH goes back to normal and sometimes it doesn't. An endocrinologist can run a test to check out your pituitary TSH response but it may not pick it up as the reduction in TSH can be subtle. It is not as profound as in secondary hypothyroidism (where the pituitary is failing).

    It will be useful to see your TSH, fT3 and fT4 figures.

  • T3 free: 2.86

    Free T4: 0.96

  • Really need to know the reference intervals also (the ranges in brackets). However, the free T3 and free T4 look low assuming you lab has typical reference interavals. In the UK we have different units so it is difficult to judge without seeing the actual reference intervals.

  • Here are results with reference ranges:

    T3 Free2.86 pg/mL (2.3 - 4.2 pg/mL)

    T4 Free0.96 ng/dL (0.76 - 1.80 ng/dL)

  • These are rather low. I would expect you to have some symptoms and your TSH to be elevated, perhaps 10 or 20 but the fT3 figure gives me a strong hint the TSH was not high. If the TSH was high your fT3 would likely be higher.

  • If been overtreated or hyperthyroid, for some time you can also suffer from tertiary Hyperparathyroidism.

    See parathyroid.com for detailed explanation

    Or if you have undiagnosed gluten intolerance, could be secondary Hyperparathyroidism due to long standing low vitamin D / calcium.

    There is a good app (not free - £3.50) - calciumpro.com

    This can help diagnose your own situation - you need blood test results for vitamin d, calcium and PTH to put into the app and it works out most likely scenario.

    Would be good idea to get vitamin d, b12, folate and ferratin levels checked.

    If vitamin d is low, then suggest also check calcium and PTH levels.

    Similar app made by same people, called vitamin d pro

    Again very good at suggesting causes and degrees of low vitamin d

  • ???..(path lab cock up maybe )...or other meds taken at the same time to cause less effectiveness..any vomiting at the time where meds could of been brought up..!!...I'm only 3 yrs on from having TT..and this thyroid is a constant learning experience ...chin up and be positive..xx

  • Did you get tested for hashimotos? If not, you should be.

  • The only reason I know that would send your TSH crazy is an infection. I get swings but only from 0.1 to 13.

    If you've been medicated for a while it can jump fast, last time I stopped medicating mine got to 5 in a week.

    I find the TPO antibodies important here.

    When I'm stable they are negative but when I have a thyroid storm they are high.

    I would bet on a massive immune response to something.

    I would also go to T3 supplement instead of levo if you're so sensitive because if you're on Levo it can take weeks to regulate yourself after a storm but T3 is pretty instant

    Break your T3 up and take tiny bits throughout the day.

    I think you're a sensitive flower and need to make very tiny changes

  • Well, here you have a prime example of why doctors should not dose by the TSH alone. It means very little once you are on thyroid hormone replacement. And, I suppose, you were just having your TSH tested once a year, so they had no idea how long your TSH had been suppressed. But, once they found it was suppressed, they should have immediately tested the FT4 and FT3, that's would have given them much more information. The TSH rarely corresponds to the varying levels of the FT3, which is the most important number.

    Did you always have your test at the same time, early in the morning? Fasting? Leaving 24 hours between your last dose of Levo and the test? Have they tested your antibodies - TPOab and TgAB? If you have Hashi's, that could explain a lot. If they don't do the right tests, how can they possibly know what's going on?

    And how did you feel on 200 mcg Levo? Did you ever feel well? Or have you ever felt well on any other dose? If not, it could be that you don't convert very well, so they kept upping the dose of Levo because you still didn't feel well, without knowing that you were still lacking the most important hormone : T3. And, they wouldn't know that without testing the FT4 and the FT3 at the same time. Most important to get those done! :)

  • The TSH blood test is unreliable, which is why hundreds of people are either undiagnosed or under-medicated. Tsh results are affected by many other things, the free t3 and free t4 blood tests give a picture of how much storage and active thyroxine you have.

    My tsh has been suppressed for 6 years now. I am not going to lower my dose just so that I have a tsh reading?! and spend my life in bed!



  • I had to stop my thyroxine for two weeks last summer prior to thyroid scan here in Lincs, must admit I felt zombie like at the end.


  • My wife had similar sitiation but constantly taking the pills daily the result is now 1.5 only taht is with in the range. For you also it will come down leave all thoughts and be happy time will make the things OK


  • Thank you.

  • For me anxiety and unable to sleep are symptoms of undertreatment and not hyperthyroidism. Thyroid-s has been a godsend.

  • Why are you so interested in TSH? It isn't a direct measure of thyroid hormone levels. You should be looking at FT3 and FT4. Although my doc does the TSH test, my only interest in it is just to make sure TSH isn't lower than 0.04.

  • Why do you try to make sure your TSH isn't lower than .04? I went to a new doctor. He was concerned because my TSH was under .5. When I asked him why this was dangerous, he said, "I don't know. They just always told us not to let it happen." !!!!!!!!!!

  • lol Thanks for the laugh! Ha ha!

  • Years ago, I read a meta-study published on pharmacist.com (gone now) that claimed there were absolutely no problems caused by low TSH so long as it did not go below .04. More recently, I read an article by an alternative doctor that also mentioned the .04 figure. Wish I could direct you to these articles, but I just didn't save my trail.

  • But did these articles say why 0.04, exactly, and what would happen if the TSH did go below it? Mine has been 0.01 for years, and nothing has happened to me. :)

  • Sorry I don't have the original articles. I did find the following 2010 article:


    This article mentions a "UK research study" which found that there was no morbidity associated with low TSH, defined to be the range 0.04 - 0.4. Not clear why 0.04 turned out to be the magic number.

  • It remains a mystery! lol Or rather an endo myth. There are lots of those!

  • We need a movie about endos. perhaps it could be titled "Lord of the Levothyroxine"!

  • Who would pay to see that!?!

  • GG and Eddie83,

    I'd pay NOT to watch it :o

  • Who would pay an MD for no results? But patients do it all the time!

  • Because, for the most part, they think they have no choice.

  • It was just today that Janie of STTM suggested, in one of her facebook posts, that self-treatment is an option. Hoping that some smug MD picks up on this so we patients can flame him down!

  • Hmmm... I think MDs already know that a lot of people self-treat. I can't imagine that one would dare post on Janie's page!

  • Hi Agi, maybe you need to check your Antithyroid Thyroglobulin Antibody and Antithyroid Peroxidase. I was misdiagnosed for Hashimoto and took 200mcg too. Than holistic doctor found that problem is in very high level of antibody and stress hormone level. Ask your doctor to check them too for better picture.

  • How does treatment change when you find out Antithyroid Thyroglobulin Antibody and Antithyroid Peroxidase results?

  • Hi Agi, sorry for my English, I will tfy to explain. Before my private naturopath doctor found hashimoto, I was taking levothyroxin for last 30 years. Diagnose was hypothyroidism. Huge dose of levothyroxine, and only that doctors prescribed to me. All tests were about T4 and TSH. Now my doctor curing autoimmune metabolic problem with gluten free diet, 4000mgc of vitamin C, iron, Bcomplex, using aloe vera plant for detox and other supplements busting metabolism. I try to reduce my stress level and recover my nerves with regular exercises and emotional control. Check and control my body weight ( no food after 6pm). Chenging my lifestyle and habits.

  • And you take no thyroid replacement at all?

  • Slowly will low my dose of thyroxine. It was 225 , now 175. Nexth month will check my blood and keep fingers cross.....

  • Agi,

    Check out links on Hashimotos. Datis Kharrazian & Chris Kresser always write good articles.





    Hashimotos & The Gut


  • Hi again Agi, I thought also, maybe your thyroid already got ruined by antythyroid antibodies. Thats why TSH got lower, it happens sometimes with long time hashimoto. But the best way to find mindful doctor and make all that tests.

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