Hi brief history. Partially thyroidectomy in 1995 been on thyroxine since 1997. Undermedicated by GP for several years until 2022 when I eventually saw an NHS Endocrinologist who increased my Thyroxine. In 2023 I was given a 6 month trial of T3 which I started in December 2023. I last posted about a month ago & have since had a further blood tests on 1st May
Previous results 1st March TSH 0.03 (0.27-4.2) T3 4.5 (3.1-6.8), T4 14 (11-22)
New results 1st May TSH 0.01 (0.27-4.2) T3 5.1 (3.1-6.8) T4 16 (11-22)
Over the past month my symptoms have got a lot worse mostly exhaustion & brain fog but also developed awful insomnia which I had previously for many years but settled as soon as I started T3. I though I had cracked it but no I'm back to being awake at all hours getting only the odd few hours of sleep here & there. I'm exhausted within an hour or less when I try to do any cognitive work. I did try a small increase of thyroxine 12.5mcg alternate nights but started with very shaky hands & palpitations so dropped back to my current dose of T4 75mcg & T3 10mcg twice a day.
I can see that my levels are improving so I don't understand why I'm feeling worse. Bloods done at 9am however I forgot to follow protocol on T4 so just omitted the night before my test (I take mine at night) so guess that will affect the results slightly. I am going on holiday shortly & really need to feel better than I currently am. My next appointment with an Endocrinologist is when I return in July.
Any suggestions to improve my symptoms would be very welcome. Thanks in advance.
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Otto11
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Hi thanks for your reply. Yes last dose of Thyroxine would have been about 34 hours. I hadn’t realised until it was too late to change it. I have probably messed up T3 too as last dose was 15hours before test.
I’m currently taking 75mcg Thyroxine & 10mcg T3 8am in morning & 3pm. Always same brand. T3 in Roma & Thyroxine Accord.
Vitamins last checked Nov 23. Last B12 injection last week I get them 6 monthly. It was always 3 monthly till lockdown but GP wouldn’t reinstate them. Endocrinologist asked him to reinstate which he has done but only 6 monthly 🤷🏻♀️ guess it saves them £2.50!!!
If my levels were higher had the test been done according to protocol then presumably my T3 will also be higher? Or would my T3 be lower because I left it 15 hours before test?
Should I get a private test? Or wait till mid July to Endocrinology appointment?
Thanks I have just found out I can get B12 injections at Superdrug so will do that in future. I don;t have Pernicious Anaemia. Those people were still given theirs. I had been one 3 monthly since about 2011. What can I do about my current exhaustion ? should I try a slight increase in thyroxine again?
once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
So presumably your hypothyroidism is autoimmune too …..not just as result of thyroidectomy
You need both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
If not currently on gluten free diet get coeliac blood test via GP
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Sorry I just realised I didnt reply to your last message. It's really helpful thanks. My TGO antibodies were 131 (0-115) that was in 2022. My Thyroid Peroxide antibodies were below 9 (0-34) I guess that is positive but don't know for sure. I had a coeliac test done some years ago which was negative. Does that need to be repeated? I have decided to wait till the week before my appointment in July to have my next blood test then take it from there. Thanks.
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