All these years?

Hi everyone

I am very confused... I got dx with hyperthyroidism a few months ago and am on 75 mcg levo. Building up. But for years and years i have felt unwell and was dx with fibro 7 yrs ago. I have read many posts on here that make me wonder how long I've actually had a thyroid problem.

Is it possible i have had the symptoms of a underactive thyroid for much longer than i thought?

And if my bloods were coming back alright then how come? I'm quite confused.

Many thanks

11 Replies

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  • I think you must have been diagnosed w hypothyroidism and yes, you may have had it in a less overt way for a long time before your blood test results fit the clinical definition. That is not uncommon. The parameters for diagnosis are sometimes applied very rigidly so our blood tests can float around on the margins for many years before they are exactly right for the diagnosis.

  • thank you so much for your fast reply. Much appreciated. What i dont understand either is do i need t3 too? Confused.com???

  • Do you have copies of your blood test results? It would be helpful to know what your tests say.

    Most people who take levo convert it to t3 as it is meant to be. Some people don't convert, some people seem to convert fine but just don't feel well on it, some fine natural desiccated thyroid works for them.

  • My results started very loe. Still were low last time but only startef treatment recently. Anyway:

    T4 was 3.9

    Tsh 110.2

    Then it was:

    T4 5.6

    Tsh 77.9

    Many thanks for all your help x

  • Blimey, even without the lab ranges I can see that is quite severe hypothyroidism. (Lab ranges always help put the results in context but in general normal tsh ranges go up to around 5.) Your tsh is very high, no wonder you don't feel well. Are you having your blood tests and meds adjustments every 6-8wks?

  • Blood tests every 4 weeks then levo increased straight after more or less because my doc makes appointments accordingly.

    I was told i was very low. Never felt so poorly if I'm honest.

  • Well I'm glad to hear it, that is rather more quickly than most people would find helpful (it takes 6-8wks for levo to stabilise) but you need prompt attention. When your tsh is closer to the normal range maybe they will slow it down a bit.

    You may want to keep an eye on your vitamins and minerals: vit d, b12, folate, iron, ferritin. When they're low (as they often are) they can make everything worse.

  • I will ask for those to be tested on the 21st. And yes, i do believe they said once i'm more stabilised it would slow down a bit.

    When the doc saw me they other week he said he did'nt know how i was atill standing let alone looking after my kids and a house etc...

    I'm glad i have a good, attentive doc.

  • Yes, so far he sounds good... unless you find he missed it for many years before diagnosis! The point of keeping an eye on these things is to prevent people from getting as ill as you are.

  • Hi Demitria

    I agree with puncturedbicycle.

    I had "normal" results for years, but felt unable to work and was stuck to my bed most days. It was thanks to this forum that I began to challenge the GP who eventually agreed to a trial of thyroxine, and I regained my life.

    If your iron and vit d are low, then your body won't be able to make best use of the thyroxine you take.

    Hope you feel better soon.

  • I am on a very high dose vit d already due to that being very low too. Many fibro sufferers have low vit d too. And thank you very much for your well wishes. X

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