Hi! I have a family history of autoimmune thyroid disease ( my mother, my younger sister both have high antibodies).I were in professional sports since I was 7 till 20 . Has been diagnosed with thyroid issues at 13y.o when high APTO and lots of macro follicles (nodules) in thyroid at ultrasound were found ( my fT4,T4, TSH were in a normal range that time though). I have been taking t4 , selenium, mg,D3 and B12 , zinc during good 3-5 years while in the university I've been told my condition stable now and I have no longer to be medicated. Also during my first years in uni i lost around 7to 9 kg first but then I gained it back even +3 additional kgs without changing activity or diet And I was not able to tolerate cold, had muscle/joint pain, memory+sleep issues and depression. I have been trying to cope with symptoms by my own via vits, lifestyle, and some low dosage of t4 that my gp prescribed ( refused to send me to the endo insisting that my labs are fine and ignoring past history and ultrasounds). Since 2018 I started to gain weight while I had my routine unchanged, my mental health also went south. In 2020 i didn't receive any help due to COVID while my symptoms were increasing but confusing as they were contributing to both hypo and hyper: gain weight, muscle pain , high heart rate and low tolerance to hot weather and any kind of exercises( even walking) , insomnia, depression, migraine, severe bloating and cramps, intolerance to lots of food. By the spring 2021 I managed to check privately several times my hormones and I had ok to low levels of everything except for both types antibodies - they were out of high range. I were prescribed unenthusiasticly low dosage of levothyro and then I moved to the UK where I was ignored by GP and thyroid problems for this 2,5 years. No need to tell that I gained+20 kg on top of I had when moved here( I was keeping sports and diet on the high level whilst I was able to) my thyroid symptoms are insane. But they keep ordering ( after a battles) only t4 and TSH in random times of the day once in a while ( and my blood test always comes out ok or that is what they say: i don't consider t4 11 is o-key..) and no action taken and endocrinology appointment refused to be given or t3 and antibodies tested. Just before the NY I again did privately full thyroid panel( was able to get only 9.30 am and they run out late so blood taken around 10 , no food, no water before) but it came back " in normal range"normal ( good ? but my symptoms are present and my thyroid became bigger during this year ). Looking forward to get some answers and solutions to be able to function and finally get official diagnosis in the UK . Do have pain in the thyroid neck zone and all the other like headaches, muscle joint pain, straw like thin hair and hair loss, puffy legs, bloating, food intolerances etc..
Test results for the last private test: TSH 2.6( 0.35-4.94), ft4 13 (9-19), ft3 5 (2,4-6), TPO antibodies 1,40(0,00-5.61), AntiThyroglob antibodies 1,8 (<4,12)
My supplements as self medication are: mg bisglycinat 300 mg daily, b12 in drops 2000 , vit d 2000 .
Written by
Vidma
To view profiles and participate in discussions please or .
High thyroid antibodies confirms autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
is this how you did last private test
Free T4 (fT4) 13 pmol/L (9 - 19) 40.0%
Free T3 (fT3) 5 pmol/L (2.4 - 6) 72.2%
Low Ft4 (levothyroxine) suggests you need dose increase in levothyroxine
Ft3 is much higher. Are you taking any T3 or NDT?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
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
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GP ignores Private Endo's letters/blood test results etc.
Can anyone help me with GP's that are ignoring lump in throat please?
Lost in ignorance, bit scared
Had my thyroid checked in Cyprus. Fed up with 'out of range' results being ignored by my GP
Encrinologist Ignores Free T4 and Free T3 OMG!!
