Hi I have trouble getting a GP appointment - in that I never get one. Test results are relayed via the receptionist so never any opportunity to ask questions.
This is the latest test and as a result I've been told to vary my dose (normally 125mcg) taking 100mcg alternate days, 125mcg on the others.
I have lots of symptoms that are worsening that I know are related to Hashimotos but he refuses to acknowledge them. I have B12 injections every 10-12 weeks.
I'm due for another test in a few weeks and want to know what the attached one indicates as I understand TSH is not a reliable indicator to use for changing medication but not sure what the extremely low level indicates
Thank you
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Polly8855
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The same question was asked yesterday, and this is what I replied:
Doctors believe that low/below-range/suppressed TSH always means that you are taking too much thyroid hormone.
It doesn't. What it means is that your pituitary is satisfied with your thyroid hormone levels in the blood and considers that you don't need to stimulate your thyroid to make any more thyroid hormone. That's all it means.
But the TSH is totally unreliable at that level because if there's any thyroid hormone in the blood, the pituitary gets served first, as it were. So, the pituitary can be satisfied but other cells in the body can still be thyroid hormone deficient.
Plust a TSH alone will not tell you:
- how well you absorb thyroid hormone replacement in the gut
- nor how well you absorb it at a cellular level
- nor how well you convert T4 to T3
- nor does it distinguish between T4 and T3
- not does it usually correspond to your symptoms, because it doesn't cause symptoms.
To know all those things, you need to have your FT4 and FT3 tested.
So, whatever your doctor thinks he knows from looking at your TSH result, he probably doesn't. Therefore, one should always refuse to reduce your dose based uniquely on a low TSH. If you feel well on the dose you're on, just say no. If you feel you need an increase in dose, tell them you want your Frees tested first. They won't do that, so you won't reduce your dose.
At least you've had your FT4 tested, and it is high. But T4 is not the active hormone, and you could be a poor converter so your FT3 is low and that's why you have symptoms. But doctors know nothing about conversion. And your doctor sounds particularly ignorant. Maybe you could do a private test to find out?
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
Thank you for the in depth reply I will work through it
I decided to try gluten free over a year ago and it’s made a massive improvement although I realise it’s made testing for coeliac impossible unless I go back to gluten
Hi there - if you phone the surgery you should be able to book a forward appointment even if you have to wait - not one for saying that the system works well - it certainly doesn't - but you need to speak with someone (whether that will actually solve anything with our thyroid probs is another question) !
the standard response is you are offered a phone appointment in two or three weeks time - I don’t feel a phone appointment has any value You don’t get a chance to speak and it’s easier to be sidetracked I may have to try changing my GP
Disgraceful - I have a really good GP and my DIL changed from one that was rubbish and she cannot believe how good mine is. I can get an urgent appt if needed and they are also sending us to a local hospital in the evening where a GP will see you if urgent. I get so angry about this - I would suggest you look at the CQC ratings of GP practices and see who has a good reputation. They are few and far between though I daresay.
Sorry you are suffering - read your bio to look for T3 levels but not there but it shows you been suffering a long time.
It sounds like you need to know T3 levels to see if you are getting enough from your high T4 levels. This will guide your under over active dose and tell you if you are a poor converter.
At home is cheapest option and Thyroid UK have discounts.
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