My TSH wont stay suppressed and the Dr keeps raising it. I am now on 250 mcg of levothyroxine and feel dreadful!!

I had thyroid cancer about 6 years ago and for the first 4-5 years everything was fine. The last 12 months has been hell. My TSH wont stay suppressed and they have gradually raised my Levothyroxine to 250mcgs. I have begged my Dr to reduce it as it is now impacting on my daily life! I am about 3 weeks into the latest medication rise and truely feel like i cant cope anymore. Is a TSH of 0.1 really so bad? or does it have to be 0.05 regardless of the consequences? Please help me. I have trawled the internet for answers to my question for a long time now but to no avail.

11 Replies

  • Chances are that you not doing the t4 t3 conversion thing. So he tsh won't go down.... However 0.1 not exactly high......

    Get them to give you some t3. That should sort it......

  • I am assuming you had your thyroid gland removed? If so, I think it's a pity they cannot prescribe NDT as it has all the hormones your healthy thyroid would have produced. It is also more synergystic to the human body than synthetic levothyroxine. Levo may suit some though.

    I am sorry you are still unwell. You weren't on Eltroxin initially, were you?

  • I thought after thyroid cancer T3 was the treatment of choice

  • If only! A short course of T3 to ensure your TSH is fully suppressed, maybe, then switch to T4 for the long term. And all depending on where you're treated - there doesn't appear to be a concensus between oncologists, surgeons and endocrinologists about how to medicate TT patients.

  • What dose of levothyroxine were you on a year or two ago? If you are now having to take a lot more levothyroxine then something has changed, in which case I'd ask to see an endocrinologist. You might be able to request to see the endocrinologist who reffered you for surgery by contacting their office directly, as a follow up appointment. Lastly, was your fT4 measured or did they just do TSH?

  • Are you still seeing a specialist, or is it just the GP playing with the meds? I needed to see a specialist, and GP never sent me, just messed around with my thyroid meds.

  • ask to see an endocrinologist again if you aren't currently

  • Agree with the people who say you should be on T3 or at least Armour. T3 suppresses the TSH far more than Levothyroxine.

  • 0.1 TSH Isn't so bad as long as your Thyroglobulin antibodies are undetectable - tell your GP to test for that and stop pushing you into thyrotoxicity with too much NHS 'Valu' Levo.

  • I was prescribed 200mcg Levothyroxine post completion and RAI. TSH was undetectable and I felt dreadful. Dose was decreased in 25mcg until I was on 100mcg but had gained fibromyalgia, COPD, parasthesia and a host of other debilitating symptoms. TSH was then 0.03, FT4 low and FT3 below range. Endocrinologist wasn't concerned and dismissed me for six months.

    I added T3 which lifted brain fog and alleviated some symptoms temporarily. I was convinced it was a reaction to a build of Levothyroxine and stopped it. Two months later I also stopped taking T3. I felt so ill and was mostly bedridden I could only hope that clearing my system of all meds would help. a detox, if you like. I was suicidal and didn't much care if cancer recurred.

    After two weeks on no meds I could breath, parasthesia, internal tremors and debilitating palpitations stopped and I could sleep. A lung function test (spirometry) showed I had 97% lung function (six years after quitting smoking). I continued off meds for 4 weeks in all but was bone crushingly exhausted and cold so resumed on 100mcg Levothyroxine. TSH had risen to 107.5 but I still felt better than when on Levothyroxine.

    Palpitations resumed after 7 days and tremors returned so I reduced T4 to 75mcg and added 25mcg T3. This seemed to do the trick for me and was the beginning of my recovery although my TSH was 0.16 and no suppressed.

    In February the endo agreed to prescribe 20mcg T3 in addition to 75mcg Levothyroxine after I told him that I preferred to have some quality of life now and would accept increased risk of cancer recurrence and pointed out that T3 suppresses TSH so it may not be a risk after all. In March I hit a wall when I increased activity and upped T4 to 100mcg and was able to tolerate it. In April I'd become more active then hit another wall and increased my T3 to 30mcg and increased again this morning to 40mcg.

    I'm not suggesting you stop medicating but it is recognised that many patients do require T3 (Liothyronine) in addition to T4 after total thyroidectomy and T3 also suppresses TSH to avoid recurrence of cancer. If you aren't converting T4 to T3 increasing your Levo is only going to make you feel worse.

    If your GP won't prescribe T3 you can buy it online. PM me if you need a source.

  • Have you asked him if he would change you to natural desiccated thyroid e.g. Armour, Erfa, or at least reduce some of your thyroxine and add liothyronine (T3).

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