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Hello everyone, I was diagnosed with an underactive thyroid 18 years ago and have had a relatively easy ride. My thyroxine levels have been tweaked slightly over the years. However, after blood test last October, my thyroxine was decreased from 175 to 125. They have been as high as 200 in the past. I feel like I am conducting my life through a misty window. I've gained 12lb in weight, and have gone from a regular gym bunny to a lethargic couch potato. I've approached my GP twice who tells me my levels were too high hence the reduction. I've argued the " what's normal" debate but it's not working. These are my results from last October

Serum T4 level. 26.0 pool/L (10.0-20.0) above high ref limit

TSH level <0.03mu/l (0.2-6.0) below low ref limit

TFTs compatible with thyrotoxicosis suggests slightly excessive replacement T4.

Any comments or advice would be more than welcome.

8 Replies

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  • Hi Ladyb1, welcome to the forum.

    Well, you're obviously over-dosed on levo, but the question is, are you converting it to T3 correctly? And that we don't know, because they won't do the right test! They are so very ignorant about thyroid!

    So, I can only suggest you get your own tests done :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit D

    vit B12

    folate

    ferritin

    And, if you find you aren't converting to T3, buy your own T3. Because, in the present climate, you will not get it prescribed, I'm afraid. :(

  • Thanks for your reply, I'll ask my GP about those tests listed. If he doesn't approve them all is there any you would recommend as most needed. I'm new to all this, I've been quite lucky compared to other posts I've read on here.

  • They are all needed, that's why I listed them. And, no, your doctor won't do them all, that's why I suggested private testing.

    You can find details of private testing, here :

    thyroiduk.org.uk/tuk/testin...

    If you then post the results on here, with the ranges, people will help you understand. :)

  • Thanks for that Grey Goose, will do.

  • You're welcome. :)

  • Welcome to our forum,

    The worst thing doctors can do when patient is doing well on levothyroxine is 'adjust' hormones in order to fit the 'TSH' into a 'range'. That's why you've become unwell. The fact that you have been well on levothyroxine for eighteen years and now it's gone haywire due to an adjustment.

    Demand that the doctor increase your hormone level to what you have been taking for 18 years or you'll buy your own.

    Befor the blood tests and levothyroxine were introduced we were given thyroid hormones (NDT - natural dessicated thyroid hormones) until we were well. Slight adjustments now and then maybe.

    web.archive.org/web/2010103...

    When you have blood tests from now on for thyroid hormones leave 24 hours gap between last dose and the test and take afterwards. The appointment should be the earliest possible, fasting and take hormones afterwards.

  • My results were like yours. My old GP was happy enough to let me have a suppressed TSH and over range FT4 for years, prescribing ever increasing dose of Levo but I was still symptomatic. They really don't have much idea.

    I did full tests privately and found my T4-T3 conversion was poor, but eventually found out my reverse T3 was high. This is where instead of converting wholly into FT3, the T3 converts into reverse T3 which can give the same symptoms as hypo. You might want to look into that.

  • Thank you for all the advice, onward and upward !

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