HI, I have a problem with oedema in both my legs and I think it's related to my thyroid !I have only had my antibodies checked once in ten years and they were off the charts 1000 + !
I am currently taking 125mg Levothyroxine but worried this is the correct treatment as I only get checked for my TSH when having annual bloods.
I have got the name of a private Dr who prescribes NDT, but is quite expensive and I don't have a lot of funds.
I have an appointment with my Gp and going to ask if I can get an NHS prescription for NDT. Wish me luck cos last time was a no go years before 😙
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Yorkshireman356
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Good luck with trying to get NDT on the NHS - though it is / was there as a ' named patient only prescription ' and 20 odd years ago available from your doctor if T4 monotherapy didn't fix the hypothyroid symptoms being suffered, as was T3 - Liothyronine.
Financial constraints rather than medical need seem to be where we are now.
No thyroid hormone replacement works well if your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D - are not optimal and low thyroid levels cause low stomach acid which in turn compound the problem as your body struggles to extract key nutrients through your food.
I'd suggest in the first instance to arrange a full thyroid blood panel to include your TSH, Free T3 and Free T4, thyroid antibodies,, inflammation, and the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D.
If your doctor can't help you with this there are several companies listed on the Thyroid UK website - thyroiduk.org - who can - and once with the results start a new post here with the results and ranges.
There are private blood companies who also offer a nurse home visit to draw the blood for you, at a additional cost, but it is the least stressful way and think you owe it to yourself to have the information and then get considered opinion from forum members to start off the way you need to go in order to reclaim your health and well being.
Between them, I think Medichecks and Blue Horizon pretty much cover the country with this additional option of a nurse home visit.
Stop any vitamins and minerals you maybe taking around a week before the blood test.
Make an early as possible morning blood draw appointment and DO NOT TAKE your T4 medication for that day until after the blood draw - so that we measure what your body is holding rather than what you have just taken.
As a general rule the T4 needs to be taken on an empty stomach with a full glass of water and you need to wait around an hour before eating or drinking anything - is this how you have been taking the T4 thyroid hormone replacement ?
You might eventually get T3 prescribed alongside Levothyroxine if FT3 remains low once levothyroxine dose is fine tuned and all four vitamins tested and optimal
Come back with new post once you get full thyroid and vitamin test results
You’ll need to test TSH, Ft4 and FT3 privately
You might get GP to test vitamin D, folate, ferritin and B12
I have only had my antibodies checked once in ten years and they were off the charts 1000 +
Don't worry about not having had thyroid antibodies retested, there's no point. Your raised antibodies confirmed autoimmune thyroid disease (known to patients as Hashimoto's) so there's no need to test again. Antibodies fluctuate anyway so may show a different level whenever tested.
With Hashimoto’s trialing strictly gluten free and/or dairy free is always worth trying
But get coeliac blood test done BEFORE cutting gluten 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 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
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