I have been suffering with a range of symptoms over the years, most notably migraines (vestibular, with aura) and shooting pains in limbs and joint pain. I have had many tests over the years which showed nothing. In the last couple of years I have been struggling with itchy skin, metallic taste in mouth, hair thinning, fatigue, brain fog, generally feeling “off”. My sister has recently been diagnosed with Hashimotos (she has been very unwell) so I got tested. My antibodies are high, but I have been told this doesn’t mean I have Hashimotos, only that I may develop it in the future and because I don’t have a goiter or low TSH, there is “no evidence” of Hashimotos. I’m feeling so frustrated, I do not disagree with the results, and am not desperate to start medication I don’t need, but I am battling every day with these symptoms, they are affecting my life and I feel like they’ve just been dismissed yet again with no explanation or suggestions on what I can do to manage them. Does anyone have a similar experience?
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BigSkyMontana
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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
Thanks for all this. I was tested at about 09:30 in the morning, and had only drank water. I’ve been taking Vit D 2000 every day for the past couple of months.
I’m amazed that you have been able to interpret my results better than the specialist I saw. All he said was my thyroid levels were normal. I’m sure he also explained how the thyroid works incorrectly… he drew me a diagram. I’ll dig it out and post here. It’s so frustrating.
I’ve been taking magnesium for a while. I normally take it in the morning but I will change to later in the afternoon on your advice. I had a CRP test done a while back but I believe it was negative, which I thought was very surprising because the pain in my joints was awful at the time. I can look into getting another one done though.
My antibodies are high, but I have been told this doesn’t mean I have Hashimotos, only that I may develop it in the future
Think your doctor may have got a little confused here - they often do. Pretty sure that high, over-range antibodies means you do have Hashi's, but not enough damage has yet been done to make you hypo, and you may develop hypo in the future. A lot of doctors think that the words 'hypo' and 'Hashi's' are interchangeable. The aren't. Hashi's can be the cause of hypothyroidism, but not all hypos have Hashi's.
because I don’t have a goiter or low TSH, there is “no evidence” of Hashimotos.
Again, the ignorance of what it's all about. Not all Hashi's people have goitres. Or maybe it would be more accurate to say that not all people with Autoimmune Thyroiditis - i.e. with antibodies - have goitres. Some don't, and then it's called Ord's. But I doubt he's ever heard of Ord's.
As for the TSH, it should be high if you're hypo, not low. So, I think he may be muddling Hashi's, Ord's, and Graves' up together and producing a reason not to diagnose you! Typical!
In any case, with 'Hashi's', levels jump around and the TSH is therefore not reliable. You need the actual thyroid hormone levels tested: T4 and T3.
I do not disagree with the results, and am not desperate to start medication I don’t need,
No, you should disagree with your doctor's interpretation of them, though!
And, you don't actually know whether you need thyroid hormone replacement or not without full testing. So, don't give up! There's something going on with your thyroid and you need to know what, even if an ignorant GP doesn't. Symptoms often start long before anomalies show up in blood tests.
Thanks for replying. I have posted my latest test results on the comments above. The exact response from a private Endocrinologist Consultant is as follows:
I note her TPO antibodies are positive. The thyroid function is normal, TSH 1.54. She does have a risk of developing autoimmune hyperthyroidism, but at present there is no evidence of thyroiditis. Her thyroid hormone levels are completely normal. I have suggested she would need her thyroid function monitored as she has a risk of developing Hashimotos thyroiditis, and recommend retesting thyroid function in 6 months. She can contact me if she develops abnormal thyroid function or a goitre.
No recommendations were given on how to manage my symptoms other than avoiding seaweed, kale and broccoli… Paid £200 for the pleasure.
- he doesn't know the difference between Hashi's and Graves' - not many of them do!
- you're not at risk of developping 'autoimmune hyperthyroidism', you're at risk of developping 'autoimmune hypothyroidism. - he doesn't know the difference between Hashi's and Graves'.
- FT4 11.7 pmol/L (9.0-21.0) 22.50% - this is NOT 'normal'. Normal (euthyroid) would be around 50% - just being inside the range does not make it normal - and he hasn't even tested FT3 so he wouldn't know if that were 'normal' or not!
- She can contact me if she develops abnormal thyroid function or a goitre. - once again, you don't have to have a goitre to be hypo.
- No recommendations were given on how to manage my symptoms other than avoiding seaweed, kale and broccoli. Well, to be fair, I'm not sure there are any recommendations on how to manage symptoms - and if there were it's doubtful he would know anything about them.
And, whilst avoiding seaweed is a good idea, kale and broccoli aren't going to make the slightest difference to anything. (All to do with goitrogens, but haven't got time to go into it right now. )
Maybe I should set up as an endo and charge £200 a session, I know more about it than he does! Money for old rope!
Sorry, a typo on my behalf. I said hyperthyroidism but I’ve double checked and the letter does say hypothyroidism. Everything else still stands however.
Thanks for the info about the T4 levels. I don’t think I’ve had T3 tested, but will ask next time I go. I don’t quite understand the interplay between TSH, T3 and T4 so any other pointers would be massively appreciated!
TSH : Thyroid Stimulating Hormone. When the pituitary senses that thyroid hormone - T4 and T3 - are low in the blood, it secretes TSH to stimulate the thyroid to make more thyroid hormone. When the pituitary finds the levels satisfactory, it reduces output of TSH.
T4 is basically a storagen hormone, that doesn't do much until it is converted into the active hormone T3.
T3 is needed by every single cell in your body to function correctly, so when it's low, that's what cause symptoms.
They rarely test T3 because they just don't understand what it is or what it does. Doctors are basically terribly ignorant about thyroid, which is why we, the patients, have to learn as much as we can about it, so that the so-called 'treatment' we get doesn't make us worse, instead of better.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
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