I cant believe I am still fighting to feel well after 30 years of the curse of hypothyroid. I say curse as it runs through female line of my family. 20 years ago I was reasonably well and had a GP who was always happy to tweak my T4 and we arrived at what he thought was perfect for me 150 one day and 125 the next. But then we moved to Devon and they continually took me down to 100 until I protested or changed surgeries resulting in extreme tiredness and even losing a job at one stage. When we moved 4 years ago they wanted to take me from 125 to 100T4 and when I protested they insisted I see an Endocrinologist I wasnt keen as this had never helped in the past. However this time thanks to this forum I suggested I may be a poor convertor and this endo was brilliant as he listened and prescribed 10mg T3 and let me stay on 125 T4. I felt wonderful after a bit and all my symptoms and anxieties went away. I thanked him for giving me my life back. After 6 months i did feel some signs of being over medicated and agreed to go down to 100T4 plus the 10T3 and all was fine for about a year then out of the blue I recieved a call from the GP who had a letter from the head endo saying my TSH was far too low 0.02 and i needed to go down to 75T4 this i did very reluctantly. About 6 months later I received a call to say this endocrinology dept wanted to refer me back to a nearer one ( where i had had a very unsatisfactory time 14 years earlier and had deliberately chosen not to go there again when I was given the choice) When my appointment came I was pleased it wasnt the endo from before and this time someone who appeared to listen even apologised about the treatment I had in earlier years he even laughed when I said I imagined he wanted to take my T3 away. He also knew about Biotin and test results . But he still wanted me to reduce to 50T4/75 every other day. He also advised splitting the T3 but I find this difficult to find a window away from food. As always stating the dangers to the heart and bones of a suppressed TSH. He did at least arrange a dexa scan and my bones are fine so is my blood pressure. After just 2 weeks of the reduction I was so tired I organised a private blood test from Blue Horizon. It was done at 9am 24 hours after T4 and 5T3 and 12 aftersecond T3
TSH 0.02 free T4 12.7 range 12-22. Free T3 4.4 range.3.1-6.8. Ferritin 115 range 13-150
serum folate 13.40 range 8.83-60.8. B12 195 range 145-569 vit D 24 deficient
I wasnt surprised at low B12 as I am vegetarian and hadnt taken my B's as couldnt find any without biotin I am now taking a very high B12 and vit D.
When the surgery tested me after 12 weeks on the reduced T4 they stupidly only did the TSH which was now 0.03 and my T4 was 11.1 and only just in range. Why they didnt do the T3 is beyond me. I told them I was still very tired however I do have diarrhea which would make me think I was over medicated and I know from one of my daughters who was hyper for a time you are sometimes tired . Also from my private blood test it seems my antibodies are now normal when I know they were very high at the start as that was how I was finally diagnosed as other levels were all in normal range. After this last test when I showed GP the test results from blue horizon m and said I was not well my GP was puzzled and wrote to the endo who dismissed it all and said carry on with what he prescribed as my TSH still too low seems he has never heard of a suppressed one not recovering and mine has been below one for over 20 years.
I would appreciate some advice as I am very tempted to just go back to 75T4 every day but there is that tiny worry that as my antibodies no longer attacking my thyroid would I do my heart harm especially as I am now 72.
Written by
boxwine
To view profiles and participate in discussions please or .
It isn’t that we can’t take biotin at all….it’s just that you need to avoid biotin in supplement 5-7 days before any blood test
As a vegetarian you will need daily B12 and daily vitamin B complex
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then 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.
As you are Vegetarian likely to need ongoing separate B12 at least few times a week, or daily
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
Yes sorry thought post overlong and assumed you would know that I had found out from this forum not to take biotin before blood test I have been taking a B complex for years and not a cheap one as I knew i needed it. Interestingly the endo said not to take it for 2 weeks before a test
Thanks I think you have confirmed what I thought that I am not on enough T4 endo said Devon wont let him prescribe more than 10 T3 so quite why he thought I need less T4 its all down to TSH . I am going to tell GP I need another blood test and they muct include my T3 and vits D and B12 this time
High thyroid antibodies confirms your hypothyroidism is autoimmune thyroid disease aka Hashimoto’s
Even though your antibodies are now negative you still have Hashimoto’s
Are you on gluten free diet, if not get coeliac blood test BEFORE trialing strictly gluten free
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
there is that tiny worry that as my antibodies no longer attacking my thyroid would I do my heart harm especially as I am now 72.
Antibodies do not attack your thyroid. It is the lymphocytes produced by the immune system that attack. And antibodies have nothing to do with your dose. Nor does your age. If you are hypo then you need the dose that you need, despite all other factors and despite the TSH. So, if you have hypo symptoms then you do need an increase in dose. I'm 78, and if I felt the way you do, I would have no hesitation in putting my dose back to the amount I felt well on.
Thanks slow Dragon and greygoose. I am gluten free but have found it difficult due to being a vegetarian. I sent a photo of the blue horizon one on my phone to GP as requested. My appointment after blood test was by phone. I dont know if she then shared it with the endo when she requested more advice if she did he didnt mention it in his letter back. The private one was done at 9 but the one at surgery was later as was all they were offering and I got a very negative response when I said it should be earlier but then they tested only TSH and T4 . I just wish all endocrinologists and GP's were as up to date as this forum.
Oh, they don't want to be up-to-date, because then they'd have to treat a lot more people, and treat them properly. The status quo suits them perfectly!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Change dose or not? 
Blood results? Under or over 
I am under medicated? First 6 weeks test results.
Poor Conversion or over medicated? Or something else perhaps.
