I have been on Levothyroxine for about 2 years. I started at 25mcg and have now been worked up to 100mcg. I had a recent TSH check and it’s come back as 0.05. I asked at the reception and was told this result but there was no one to discuss it with. I was called by a nurse the following day. They seemed happy with the results, but I wonder if it’s too low?
For extra information; I am 34, have PCOS and have been having IVF. I have had some problems with recurrent early losses and thyroid was found to be an issue but was poorly managed by my IVF consultant (in my opinion). I was referred to a recurrent loss specialist obs and gynae Consultant and she monitored my TSH closely and helped me get it down. Last check with her was 1.2, before she discharged me.
Thank you.
edited to add; I am TPO positive and have a FT4 of 19.6 on my last blood test. This is pretty much static from what I can remember from memory.
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KC8990
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Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Low iron/ferritin often linked to miscarriage
Is your hypothyroidism 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)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Is this how you do your tests?
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Was test done with last dose levothyroxine 24 hours before test
Essential to test Ft3 too
And get vitamin results
So high TPO antibodies = autoimmune
Have you had coeliac test done?
If not get tested via GP or buy test
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 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
I believe you’re spot on ! After 3 years battle with my GP I finally was prescribed 50mcg of levothyroxine which brought my TSH to around 5 and still feeling dreadful.
Finally got referred to an endo unit at the local hospital last month and received a letter to say the target level should between 0.3-2.5mIU/L and once my updated blood results were updated they would increase my levels slightly.
Still waiting to hear as it was over a month ago !
Providing you’re feeling ok there is nothing to worry about. And do remember there will be some fluctuations which is perfectly normal.
Hi sorry,I'm new to this forum I only been on levothyroxine for 1 week so unfortunately unable to help but there are loads of people on here who are really knowledgeable and could help.Regards
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