Can someone help with test results? (and a long rant about endocrine clinic)

Hello, I've had a really frustrating visit to the endocrine clinic (again!) and wondered if anyone here might understand my test results better than the registrar.

I take levothyroxine oral solution 25mcg daily. I supplement with selenium, vit E and agnus castus in the morning and liquid iron, vit C, B12, magnesium and zinc in the late afternoon.

I also don't eat gluten or dairy (actually only very occasional dairy!) and avoid sugar. Doing all this means that I mange my symptoms and generally feel well and everything I have had tested is in range except for my thyroid levels... but

when taking T4 it makes me feel so unwell. I get pain in my joints, feel achey and fluey. my hair falls out in clumps and if I accidentally take a higher dose (I take it at 6am and have measured it out wrong a couple of times) then I am completely floored and have to spend the next day in bed feeling alternately dazed and crippling anxiety. However, if I stop T4 then my thyroid levels fall so far out of range and I get so dizzy I feel like I'm about to pass out. Over the last 3 years I have taken T4 at different doses between 125mcg and 12.5mcg. 25mcg is the best dose that I can settle on to maintain some thyroid hormone in my system but to not feel so unwell I can't function properly.

So I have asked explicitly for NDT and have been told that I will not get it on prescription as the hospital will not prescribe it at all because it is not clinically proven. I pushed for the prescription but was refused outright. At which point I burst into tears told her the clinic was ridiculous and that I have been fobbed off for years now. I have requested that at my next appointment I see the consultant rather than another registrar or covering doctor (who seems to know less about thyroid than me).

They have said that I should have a scan to look at my thyroid. I have TPO antibodies bit no swelling. I am really reluctant to have the scan as I am not clear what they are looking for. The doctor seemed quite unclear too and I got the impression it was to make it look like they are doing something because I was pressing so hard for NDT. Also she kept asking about my symptoms and said I 'don't look like I have a thyroid problem'. Apparently I *should* feel cold all the time, be very overweight and not be able to function at all. They have sent my bloods to a different lab in London because my test results (for the last three years) might all be wrong. Again, I feel entirely fobbed off by this.

My TSH is very high, my T4 is low but my T3 is in range. They also suspect adrenal problems (as do I) but they are only checking cortisol through blood tests. I am always in range but low in range and have to have a 9am test this week to check my levels in the morning.

At my last blood test

TSH 94 (down from >100)

T4 5.8 (12 - 22) up from 1.4 then 4.4 at my last two tests

T3 3.3 (3.1 - 6.8) up from 2.2

Cortisol 218

IgG 16.3 (7 - 16)

IgA 1.5 (0.7 - 4)

IgM 0.7 (0.4 - 2.3)

Thank you for reading all the way through! Kat

3 Replies

  • Kat, 25mcg is clearly not nearly enough thyroid replacement. If you can't tolerate more I wonder why the clinic has not trialled Liothyronine (T3)? T3 may be a better option than T3 and NDT if you have low adrenal function.

    The scan will show the size and appearance of the thyroid gland ie whether it's surface is smooth or rough and whether there are nodules not detected by palpation and if so, their size and proximity to other organs.

    Stereotyping what a hypothyroid patient looks like and the symptoms she experiences is stupid and unscientific. There are hypothyroid patients who can't gain or maintain weight just as some can't tolerate heat. Your very elevated TSH and low FT4 and FT3 denote hypothyroidism and a need for replacement hormone you can tolerate. No need to feel fobbed off by your bloods been sent to another lab for analysis. That's good practice to rule out lab errors.

    NDT isn't licensed for use in the UK so very few GPs and NHS hospitals will prescribe it. The majority of people using it self fund and buy on line.

  • Hi Clutter, thanks. I was prescribed T3 a while ago and it just accelerated the horrible symptoms I get with T4. I was wondering if that was because I was taking it with T4. Perhaps I would cope with T3 alone. Do you know if it is possible to buy particular brands of NDT online?

  • Hi Kat,

    I've Pm'd you

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