frustrated at endo

Have been under active for 21 years, but the last 6 months or more I have been getting worse although gp's thought getting high and reduced from 200 to 175 then 150 (now on) .

Went to see Prof Walker this morning and do not know whether to laugh or cry. He is one of the old school who see TSH as gospel. Mine is 0.14, (range 0.3-6) , my free t4 is 15.4 and my free t3 is 5.1 .

Gp has said in letter TSH supressed, he said it's fine. it's all fine apparently and my gp thought could be t3 conversion issue !!!!!

BUT NO ITS NOT!!!!! we read far too much on web, and don't know the functions as well as we think......... and if we want to self diagnose , fine, why don't we leave the NHS out of it. !!!!!!!!!! ( Prof Walker)

discarded any hint of my Painkillers, my citalopram (depression) , my fatty liver (non-alcholic) affecting it .

The conversation was pleasant though, not patronising but he wouldn't shift no matter what I said.

He thinks it's possible because all my thyroid tests are " normal " then I may have another form of auto-immune or a rheumotolgy problem..

I know what I am feeling, and this has all started since I lost weight (3st) and they worried my levels were high, although they were NEVER out of range. (work that one out Prof Walker ). and reduced my thyroxine twice. Now I have gained over 10lb even though still on the same diet.

Sorry for rant but feel so desperate, thinking of just starting a small dose of t3 and seeing how I go.

Help please xxxx

7 Replies

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  • Sorry to hear about the problems with your endo. I saw a diabetic doctor and she's handing all management of my case back to my usual doctor even though my thyroid levels are not stable. But this diabetic doctor wants my thyroid levels to be normal over the next 3-4 months. So if she no longer wants involvement in my care why has she said that?? So I can understand your frustration. I have lost weight too, my body mass is like 18.4 but it used to be 19.6 a few weeks ago. Have you been tested for antibodies against the thyroid? For your reference and peace of mind it may help to see what the levels of those would be like.

  • Ah, losing weight! I was on levothyroxine only for about 12 years and was fine. Then I went on a diet and lost three stones. And felt pretty rough for the next few years, until I worked out I needed t3.

    I bought my own t3 in about 2002 and then was prescribed it by the doc. I have moved on from there and now take NDT which I buy for myself, though not really managed to lose the weight again. ( I put it all back on before I started t3)

    I found a paper a few years ago, which said losing weight can impair your t4 to t3 conversion, sometimes this never comes back. I think this must be what happened to me and maybe you too? If I can find the paper I will post a link.... If not, you need to search around... It would have been on pubmed or one of those sort of sites.

    G x

    Here is a link.... Scroll down to dieting..... Its not the exact one I was thinking of though.

    nahypothyroidism.org/deiodi...

  • thank you for replying. It does seem strange that dieting can alter your thyroid, but it is when my problems started. still have 3 stone to lose so not giving up!!!.

    The endo I saw appears to think these articles we read re conversion are nonsense, but they are really hitting the spot for me.

    Hope you are well now x

  • I am sorry you are having this problem. I too met consultant thyroid surgeon - not endo - this week and because TSH in range I am fine apparently. The fact I have a huge list of symptoms and no I am not making them up is immaterial and all in my head. It's ridiculous I told my GP doctors needed to start listening not reading a lab result and making conclusion solely from that! Arrogance is what it is!

  • I so agree!! My thyroxine was reduced because it was NEAR top range not over, I felt fine . ridiculous . Hope you get sorted soon

  • In a way your professor is right when he says " why don't we leave the NHS out of it." I decided to do that a long time ago (although it's not the NHS for me but the French health system, same difference) after getting nowhere with conventional medecine.

    I did give them another chance to redeem themselves last year/early this year, but when all my hair fell out (Under their loving care!) and my doc said that that was normal at my age (69)!!! And that there was nothing wrong with me (although he hadn't tested any of the stuff I asked for saying they weren't necessary), I thought that's it! I'm going solo again!

    So, from practically dead, unable to walk, losing the use of my right arm, I've come back to just about human again. Under my own care. After all, who cares as much about me as I do!?! And who knows me better than I do? No-one.

    Hugs, Grey

  • Oh my goodness, how awful you must have felt. It is so sad that we have to look after ourselves. I saw my GP yesterday to discuss my CT scan and thyroid problem . She liked the point I made about why was my Thyroxine ever reduced as it was not above range if he is so range obsessed.!! she agreed and said well done you!!!! only thing is of course it was that doctor's surgery that lowered it twice lol. But she wants to wait until scan result in 2 weeks and we will have good discussion.

    Didn't tell her I have ordered t3 and am going to try small dose to see how I get on.

    Take care of yourself huggs x

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