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
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