I have had 2 telephone appointments with private endocrinologist as they still do not do face to face. The endo has written to my GP asking for blood tests to be done. One test the GP did not carry out and I have to revisit this.My results so far are
Serum TSH 1.9mU/L (0.27 - 4.5)
Serum free T4 17.4 pmol/L ,,(11 - 23)
Serum free Triiodothyronine 4.8 pmol/L
(3.1 - 6.8)
Serum thyroid peroxidaise antibody
>600 IU/ml (<34.0,)
The reason I am seeing a private endo is because my Gp wrote to me in lockdown after I suffered palpitations and sweating. I was told it would be a very long wait to see an endocrinologist in my county and my GP would support my decision to seek private care!
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A1Amber
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Your GP says that because your GP is not suffering any ill effects you might be feeling. Can you speak to a different GP? You surely need to mention swollen itchy eyes, as well as palpitations and sweating.
Are you on medication for your thyroid as yet? If so which brand are you taking, and has the brand ever differed?
Thank you tattybogle. It seems previous advice has been given re eyes, and I'm not sure the OP has read any of these responses as I don't see any OP replies?
PharmEU2U .... re. Thyroid antibodies ~ both TPOab (Thyroid Peroxidase antibodies) and TGab (Thyroglobulin antibodies) ~ can sometimes be in the 1000's in patients with autoimmune thyroid disease .
eg for TPOab , anything from the top of the range to about 100 is considered 'moderately raised' / over about 500 seems to be considered a 'definite positive' for research purposes .. and anything in the thousands is considered 'very high' .
i had TPOab of >3000 .. it got me a diagnosis and treatment pretty quickly despite my unspectacular subclinical hypo TSH / fT4 levels , which was handy .. but other than that a very high level doesn't really mean anything other than showing i have autoimmune hypothyroidism ..and it had recently been pretty active in destroying bits of my thyroid gland ...and that's why the antibodies were so high .. to clear up the mess from damaged bit's of thyroid floating around where they shouldn't be .
Thank you for your response. Sorry late reply. No signal last night. Yes still on 200 mgs and the blood test done at 10.30 as nothing else available. I did not have levothyroxine for 24 hours before the test. I had coeliac test done in June and it was negative.My Gp is not interested. As far as he is concerned my levels are proven correct. I am waiting on an appointment for the eye swelling as I have been referred by Specsavers as it is affecting peripheral vision. I was then seen by New Medica who have referred me to an eye surgeon who is experienced in TED. This appointment is a 16 week wait and a further 45 weeks for treatment.
I consulted a private endocrinologist as suggested by someone on this site. I wasn't made aware that it was a telephone consultation until undertaking a 180 mile round trip to the Spire hospital this endo works through.
I was refunded my petrol expences by Spire and an apology.
The endo has contacted my Gp requesting blood tests be carried out. So far they have done the ones you see and missed another and refused to do a 24 hour urine one as they said its the responsibility of the endo.
So now you have had coeliac blood test done recommend trying strictly gluten free diet
Approx 86% of Hashimoto’s patients find noticeable improvement, often significantly or find it essential to be strictly gluten free
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but further 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
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.
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)
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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
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