So I’ve had repeat blood test (5 months since last test) and results as follows
TSH 4.99
FT4 17.3 pmol/L ( 10.8-25.5)
FT3 5.2 pmol/L (3.1-6.8)
Gp advised by text:
Dear xx
your thyroid function showed a mildly raised thyroid stimulating hormone level TSH at 4.99, with a normal free T3 and free T4 level. Please repeat again in 4-6 months time as per previously
Posting here mostly for accountability and my own records but also to see if anyone can offer any advice.
Should I just continue as planned? I’ve started to feel more tired in the afternoons recently and needed to have a mini sleep. Periods still v heavy and coming every 3 weeks, not able to lose weight, although just about maintaining through diet and exercise. Do I just wait until my thyroid is destroyed? Is there anything I can do to prevent any further damage, would medication help prevent it?
I haven’t been tested for ferritin recently. I just checked my medical records and was done when I first presented with thyroid problems in October 2022:
I couldn’t find any CPR testing but will ask for ferritin and iron to be tested and looking like Gluten free might be the way to go or at least to trial it. Thanks for the advice
Is there anything I can do to prevent any further damage, would medication help prevent it?
Many Hashimoto’s patients find strictly gluten free and/or dairy free diet helps reduce symptoms, inflammation and may lower TPO antibodies slowly
Your GP should have done coeliac test at diagnosis of Hashimoto’s. If they haven’t get that done BEFORE trialing strictly gluten free diet
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 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
Do I just wait until my thyroid is destroyed? Is there anything I can do to prevent any further damage, would medication help prevent it?
Short answer: no. By 'medication', I take it you mean thyroid hormone replacement. No, that won't help prevent it. All it will do is replace the hormones your thyroid can no-longer make enough to keep you well. And that's quite a big 'all'!
OK, so a gluten-free diet might possibly reduce your antibodies. But, it's not the antibodies that are the problem. It's not them destroying your thyroid, it's your immune system. The antibodies are just cleaning up the resulting mess. So, as they have a job to do, I can't see the point of struggling to reduce them.
The disease just has to run its course, I'm afraid. So, what you should be doing is concentraiting on helping symptoms until your thyroid is damaged enough for your GP to take notice - which, frankly, he should have done by now! How many over-range TSH have you had? Two consecutive over-range TSH, plus high antibodies, should have lead to a prescription for levo.
Help with symptoms would be optimising your nutrients: vit D, vit B12, folate and ferritin, plus co-factors. And, trialing a gluten-free diet for a few months.
This is my 3rd over over-range TSH result, previously 4.48 and 4.41. I think the guidelines say over 5 with symptoms to start treatment, but I guess I’m practically there. I could hold off until my next blood test as I don’t want them to try and start me on too low a dose.
Gluten free it is then. Does anyone have any recommendations for good gluten free sites for recipes/ideas etc?
If you are under 60, the starting dose is 50 mcg. Don't accept anything less - you do have a say in all this, you know. I haven't read all the NICE guidelines, but I was pretty sure that it says over-range, not over 5. Not all ranges go up to 5 - they vary from lab to lab. But, whatever doctors like to think, you are hypo when your TSH is over 3, whatever the range.
For gluten-free, you'd do best to write a new post asking just that. I'm not gluten-free because it didn't do anything for me. And, when I was, I just lived on meat and veg, fresh-cooked at home, with no bread or anything like that.
You need to go back to your GP and point out your symptoms along with the fact that two TSH ranges above range but under 10 between 3/6 months apart, with FT4 and FT3 in range points to subclinical hypothyroidism. According to NICE guidelines you can now be considered for a 6 month trial of Levothyroxine. Do bear in mind this is just a guideline, -and the trial could be longer especially if complications arise. Typically, you would start on a full replacement dose according to weight and adjust upwards or downwards according to response. Although, experiences vary and some patients GPs starting on a very low dose and gradually increase every so often. Sometimes weeks, sometimes months.
If you have antibodies also, then I simply can’t see how treatment can be denied to you. Many GPs don’t even bother with the second TSH test for a diagnosis or starting treatment if one TSH is borderline and there are high antibodies along with symptoms.
Bottom line is, no one can advise if you should start treatment or not, but what I think we can all universally share is that by now you have choice to start treatment or not.
Generally, I’d say the guidelines are pants, but it’s complicated, eg a GP would need to argue a strong argument for not prescribing according to guidelines even if they are just guidelines.
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