DESPERATE FOR SOME ADVICE AND GUIDANCE

Hi

I apologise in advance for the length of this post!

In 2003 I hade a human heart valve replacement for a congenital valve defect (not sure if this is relevant).

In 2012 I had a 3 1/2 gland parathyroidectomy and an unscheduled partial thyroidectomy.

The surgeon came to see me the morning after my operation to inform me that he had to take away half my thyroid as it was "dead", (the remaining half has a goitre and multiple nodules), he said he was amazed I didn't have any thyroid symptoms. Anyway, this is when all my problems began.

I have felt very unwell every day since my operation. Initially I wasn't presribed any thyroid medication and it was only through sheer persistance and two endocrinologists that I was finally prescribed 100mcg thyroxine, no change in symptoms. I will list my lab results below and all variety of medication and doses I have been prescribed:

Prior to any medication:

TSH -= 2.55 (0.27-4.20)

FT4 = 15.7 (12.0 - 22.0)

FT3 = 4.5 (3.9-6.7)

100mcg Thyroxine

TSH = <0.02 (0.27-4.20)

FT4 26.2 (12.0-22.0)

FT3 5.9(3.9-6.7) NO HYPER SYMPTOMS STILL VERY HYPO

75mcg Thyroxine

TSH = 0.89 (0.27 - 4.20)

FT4 19.5 (12.0-22,0)

FT3 4.5 (3.9-6.7)

Still no inprovement, so spent my hard earned cash going private to try Armour as I could not find anyone to precribe Armour on the NHS.

Eventually on 90mg Armour

TSH 0.06 (0.27-4.20)

FT4 14.3 (12.0-22.0)

FT3 4.5 (3.9-6.7)

I still have no improvement in my symptoms and have just been changed to 50mcg of Thyroxine.

My question is what is causing my persistnely very low in range FT4 and FT3 but suppressed TSH?

I paid to have a 24hr saliva cortisol test which was high on all four samples, is this relevant.

I have every single hypo symptom which are gradully getting worse, the most worrying are the constant lighheadednes, chronic fatigue, air hunger and painful joints and muscles.

I am really desperate to get my life back after 3 years of existing rather than living.

Any suggestions of what my next step shoudl be?

milltech1959

edited to remove yards of line breaks, Clutter

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4 Replies

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  • Millitech, are your calcium levels good after the parathyroidectomy and how long did you take NDT? It can take up to 6 months to fell well on NDT. High cortisol levels may be significant but I'm not au fait with cortisol so hope someone else can help.

    I don't know why your TSH is suppressed but your FT4 was ok at 19.5 on 75mcg T4 although your FT3 was low. What results prompted a decrease to 50mcg? This reduction is likely to reduce your FT4 and FT3 further. I would suggest the addition of T3 to your 50mcg Levothyroxine may be beneficial. It may suppress your TSH and reduce your FT4 but it will improve your FT3 which is the important active hormone. If the combination doesn't improve your symptoms you might try T3 monotherapy and see if that helps.

    You should also have your ferritin, vitamin D, B12 and folate tested. Ferritin needs to be 70-90 and the others high in range. Deficiencies can present muscle and bone pain, air hunger and fatigue, symptoms very similar to hypo symptoms. VitD needs to be good to aid absorption of thyroid meds and enable T4 to T3 conversion.

  • These first two questions on this link will provide some information. Unfortunately, in the UK our doctors seem to be misinformed, in that it appears they try to keep our TSH within the 'normal' range. That doesn't always bring good health.

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

  • Has anyone ever thought to check your iron/ferritin levels? I agree with Clutter.

  • Regarding your high cortisol - this will make you feel awful and will affect your conversion from T4 to T3, amongst other effects. Read this link :

    stopthethyroidmadness.com/ps/

    To lower your high cortisol do some searches on this site for references to "Seriphos". And have a read of this thread :

    healthunlocked.com/thyroidu...

    In the first link I gave above it refers to Holy Basil being helpful. Just for future reference another name for Holy Basil is Tulsi, and you can buy a very nice herbal tea in Holland & Barratt called Pukka Three Tulsi Tea. The price of it (online) varies wildly so shop around carefully, but H&B sell it reasonably cheaply. And I've just discovered that Ocado sell it at a good price.

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