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Thread: Hello!! New here with Hashimotos and my thyroid results are unstable.

  
  1. #1
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    Rose Hello!! New here with Hashimotos and my thyroid results are unstable.

    I have Hashimotos and have been on levothyroxine for 3 years now, and am still having to get tested every 6-8 weeks. I did have a short period where I was OK for 6 months but then it all went back to square one. I'm currently on 225mcg. Last year I had a very bad period where my TSH level went far too high because my stupid drs had done the wrong blood test (kidney function!!!) so of course when I rang for the results they said they were normal and to stay on the same dose.

    Consequently I developed quite bad muscle weakness in my neck, shoulders and arms, which at the time I thought was caused from a small car accident I'd been in but turned out it was my thyroid! So anyway, my dose was put up and then put up again 8 weeks later but I developed palpitations, breathlessness, couldn't sleep, always too hot, and bad headaches right behind my eyes 24/7. I went back to the drs and got another blood test which turned out that my TSH was still too high and she wanted to put my dose up to 250!! I dropped it back down to 200 tho as I felt so awful. Within days the headaches went, and then the palpitations not long after. But then the fuzzy head started and now the muscles weakness has come back so I've reluctantly gone back up to 225.

    I asked for a referral as I should be stable after 3 years, something isn't right. But I'm still waiting for an appointment (nearly 5 weeks later).

    So that's me and my stupid thyroid!!!

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    Hello MrsE and glad you have shared your experience with us.

    Be assured you are not along in this fight with GPs as a lot of us are struggling. I am really amazed that you are on such a high dose. There are people with no thyroid and they dont even take that high dosage of thyroxine. Presumabely you didnt have your thyroid taken out?

    For the past 3 years, do you have any of your blood or thyroid test results? First thing I would advise to go back to the clinic and ask for a record and check for yourself how thyroid has been playing.

    Ask for FT3, FT4 and TSH all together to get the full picture. Before taking any steps and starting T3, make sure your body really needs it or is ready for it.

    Where are you in the UK anyway?

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    Hi Butterfly

    I know, I think it's a ridiculously high dose. I don't have the exact figures, I know when I was first diagnosed they said I was borderline, it was 10.2 I think. (Which I think now, if they're trying to get me between 0.1 and 1 how is 10 borderline?!) Anyway, as my sister is also underactive they tested me again after 3 months and for anti-bodies which came back positive. I was started on 25mcg and have gradually gone up from there having a blood test every 6-8 weeks.

    Once I reached 150mcg I was stable for a few months, long enough for me to be allowed to start giving blood again (which I'd done for years) perhaps it was a coincidence but I seemed to go all to pot after that and had to go up to 175mcg, but after a few months I started to get headaches and feel thick headed, thinking I needed to go up again I was tested and found I was too high so went back down to 150mcg. 8 weeks later it was too low so back up to 175mcg. During this time my levels were always between 0.1 and 2.

    Last year (when they stupidly tested me for kidney function, twice!!!) my level had gone up to about 4.5 so I got put up to 200mcg. 8 weeks later still too high (about 2.5) so put up to 225mcg, last test said I was still slightly too high so about 1.5. But I felt that was too high a dose.

    I asked for a referral and went for a blood test in advance of that appointment, they've tested for everything from what I could see, they took 4 vials of blood!! Included in that was FT3 and 4 as well as TSH. I'm still waiting for a letter to come through nevermind an appointment, I rang the drs yesterday to chase it up as it's been nearly 5 weeks and she said I should've heard by 3.

    Any suggestions as to what I should ask the consultant? I suppose until I know what the blood test results are it's difficult to plan what to ask. Basically I just want to know why is it 3 years later I'm still not sorted. And that if I'm on 200mcg it's too little, but 250mcg feels to me like it's too much?! I just want to feel something approaching normal again.

    I'm in Yorkshire btw.

 

 

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