I’m just reaching out to see if anyone can advise.
I have had an under-active thyroid for the past 13 years and take 150mg Levothyroxine. They have only ever tested my TSH bad Free T4 levels ( I have asked for them to do T3 levels but this was declined).. Four years ago I put on 2x37.5mcg estradot twice weekly. Just recently having accessing my records I can see that at this point my stable TSH that was always in range changed to 0.01 but a note was put by it “normal for patient”. My Free T4 levels have fluctuated the past 4 years and just recently two months ago went up to 29pmol/L my medication was reduced to 125mg of Levothyroxine and these are my latest results:
TSH 0.01 mIU/L (0.30 - 4.20) -7.4%
Free T4 (fT4) 20.3 pmol/L (11.00 - 22.00) 84.5%
I’m not feeling great, and have a lots symptoms but wonder if considering that I simply can’t even get a doctors appointment at the moment to go privately. I’m a student mental health nurse so money is a bit tight. I just want a clear understanding of what’s going on as I feel that my treatment plan isn’t correct.
Thanks for reading and any feedback would be so appreciated.
Written by
emmaboultwood
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Gosh, thank you so much this is so informative. I’m going to look at the links and book in. I can’t tell you how much I appreciate this, I feel so lost with it all. I just know that I don’t feel well and deserve to feel better.
I have taken the same brand Accord for Levothyroxine for about a year.
I have looked back in my records the last time I had my vitamins tested was 6 years ago. I just take a Vitamin D supplement at the moment.
My belief was that I autoimmune- at diagnosis I can only find this:
You could save some cash by just getting private blood tests and following advice on this group. Your GP might be willing to do the vitamin ones - ferritin, folate, B12 and D3. Unfortunately the NHS rarely test FT3 which is actually the most important result to know about to see where your treatment is at. It's possible you don't convert well, although it might just be that you have some vitamin deficiencies caused by low stomach acid in people with hypo.
Once you have the test results then post them here along with their ranges so people can comment.
Thank you! I’m going to get my vitamin levels tested and look at look at my diet. I’ve just bumbled along with it I’m going to look at the coeliac tests too.
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 with Hashimoto’s 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find 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 slowly lower TPO antibodies
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.
Thank you, I’m going to spend some time reading the research you’ve posted and look into it. Thank you for all this information and taking the time to post. I do appreciate it!!
My body didn't like levothyroxine (T4) at all. It gave me severe awful symptoms.
When T3 (liothyronine) was added to T4 (levothyroxine) I immediately felt an improvement and am fortunate to have now been prescribed T3 alone. My body likes T3 and it has calmed any awful symptoms I may have had. I feel well.
I remember how awful it was for me (and husband - as he had to cope with my immense palpitations) when on levothyroxine and can sympathise with others who still feel unwell on it.
The original NDTs from 1892 (natural dessicated thyroid hormones) were removed by the 'supposed to be experts' some months ago and limiting 'options'.
Hi emma, some points to consider given that you say your fT4 has been fluctuating :
The fT4 result is affected by how long after the last dose the blood was taken.
There is a peak in fT4 level between approx 2 -6 hours after taking Levo ... if you tested during this time it could account (it least partly ) for the unusual high fT4 of 29 that led to dose reduction. So, if you don't do this already. always test 24hrs after last dose for consistency .
TSH result is affected by time of day the blood is taken (it has a circadian rhythm) . highest in middle of the night / very early a.m..... falling to lowest around 1-2pm ...then gradually rising again.
So for consistency, best to always test @9am.
My fT4 went a bit high for no apparent reason shortly after menopause .. and i did need my dose reduced a little ( because i had symptoms of overmedication) so i dropped from 150 to 125.and i felt better.
It did it again a few yrs later ~ fT4 went through the roof , but that time i felt perfectly ok ... dose was reduced from 125mcg to 112.5mcg which felt naff for about 4/5 week but then felt ok .. but as fT4 was still way over the top GP insisted on reducing further to 100mcg .. which left me feeling really undermedicated / digestive system only working at snails pace ,, with brain of Zombie... honestly struggled to cross the road without getting run over. GP reluctantly agreed to put it back up to 112.5 despite fT4 still being high.... i have been on that dose since and am feeling ok again now , The high fT4 came down by itself a few months later.
Just mentioning that little tale in case it's helpful ~ Sometimes a 25mcg reduction is too much and a 12.5mcg reduction is all that was needed.
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new test results and dose review advice.
Hypothyroid symptoms while on Levothyroxine
New here...would really appreciate advice! :-) 
Diagnosed with Hashimoto's and struggling
