Hello, I am new to this forum and so glad that I came across it. I would be really grateful if someone could offer me advice. I have had and underactve thyroid for almost 3 years but have been experiencing all of the symptoms that I had prior to being diagnosed (and taking Thyroxine - I have always been on 50mg).
I have just received blood results due to feeling unwell and although my TSH reading is within range at 1.70mU/L, my TPO level came back as just over 600 Ul/mL.
I am going to see an Endocrinologist next week.
I would really appreciate any advice prior to this. Many thanks
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Flo1000
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Hello and Welcome 😊 you have come to the right place 👏
unless you are super skinny 50mcg is unlikely to be enough. Not perfect but 1.6mcg per kg of body weight is a rough guide. I’m 65kg which suggests 104mcg I’ve tried everything up to 125mcg T4. I’m fairly settled now on 100mcg T4 and 15 mcg T3.
My TPO have fluctuated from 141 to 400+ they are higher after stress, flu/bugs and lower when I follow autoimmune diet/wellbeing focused lifestyle of yoga and keep work stress to a minimum.
Thank you so much for replying to me, it definitely sounds like I should be on a higher dose - I was really worried with the TPO being over 600. My homocysteine/amino acids result was also over 3 times what it should be. I guess this has been affected too? I have all the symptoms back, weight gain, constipation, tingly hands, slow, sad and really really exhausted. Hopefully the doctor can get me onto the right dose. Thanks again.
Yeah that’s all hypo, poor love you must feel dreadful.
Have you done all the ferritin, vitamin D, folate, B12 tests yet?
Mine were all on the floor.
There is tonnes of advice on here on how to self treat and test these. Stuff the GPs/endos have no idea about.
If you like a good read Izabella Wentz (US pharmacist) is my go to. I have all her books, follow her diet.
Private vitamin testing recommended before starting supplements. Monitor my Health and Medichecks are my ‘go to’ places. Discounts frequently offered if you sign up for newsletters and thyroidUk10 generally works too.
That’s amazing, I will definitely do some research on here and look up and read the info from the US pharmacist - doctors don’t really seem to help.
All of my bloods were way off, no wonder why I have been feeling so rubbish.
I will definitely look into the private vitamin testing and sign up to newsletters. I’m so glad that I have joined this forum and that you have offered some great advice and put my mind at rest, thank you.
With high homocysteine you might want to consider investigating B12 levels, as well as other nutrients. High homocysteine and low B12 are often linked and worthy of note
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you taking
Do you always get same brand
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
what vitamin supplements are you taking
Please add most recent vitamin results
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)
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 do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Only make one change at a time, or add one supplement at a time or you can’t work out what’s helping
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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 or endo 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
It doesn't matter what level your antibodies are, all you need to know is whether they're positive or negative. Antibodies fluctuate all the time, but being high doesn't mean that your Hashi's is worse, nor that it's better when they drop. The antibodies are not the disease, they are the result of the disease.
Wow, thank you all so much for getting back to me, really helpful information. My vitamin levels were all really low especially B12 and folate. I have not taken any vitamins as up until the last few months, the medication kept everything under control. I will definitely look at starting a gluten free diet. Many thanks
Hi, selenium is an antioxidant which is the main part of the enzyme participating in the conversion of T4 to T3, and it is also an important anti-inflammatory. Selenium deficiency has been linked to thyroid conditions, so it is important to make sure its levels are optimal.
Studies in recent years have shown that taking selenium might reduce the TPO antibodies.
I do believe this is true at least for me, as I have been managing my Graves' disease (autoimmune hyperthyroid) remission since 2015/6 and monitoring the TPO antibodies as I am keeping a keen eye on not becoming hypothyroid (Hashimoto's as it is autoimmune - antibodies are elevated). After a second bout of Covid my Graves' symptoms started reappearing - I tested with Thriva's advanced thyroid test and got confirmation it was happening again. I went back on daily selenium, Omega 3, vitamin D, activated B's and managed to get back to normal readings in a few weeks time. I should mention I have been gluten free since 2016. I do believe keeping inflammation down is key to these autoimmune conditions, and supporting the thyroid gland with optimal selenium. Also lifestyle changes - deep breathing & aromatherapy to keep stress at bay, Ashwagandha to increase resilience of nervous system to stress, calming teas like lemon balm, doing everything I can to sleep well at night.
Thats great advice, thank you. I guess I didn’t do much research when i first took my thyroid medication just under 3 years ago as my doctor didn’t explain anything and I felt ok until recently but now after these blood tests and feeling so rough, I will definitely look at a gluten free diet and supplements as you have suggested in your post. Thanks again for replying.
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