Had underactive thyroid for around 8yrs. Started out on Levo which I just never felt well on. Did lots of research & reading & put my self on Armour which was absolutely amazing. Sadly the cost was to become prohibitive. Then went onto Thyrod S which I have been on until recently. Unfortunately I cannot access it so am now back on Levothyroxine.
I am swinging wildly from being under to over active & from feeling like I am going to die, palpitations, no sleep, moodiness, weight loss, diarrhoea to sleeping constantly bone & muscle pain.
I have adjusted my dose which has reduced palpitations but I just feel lousy.
My Endocrinologist has already said he will not prescribe Armour, I do understand his position but I cannot carry on indefinitely in this manner.
This is way I came of Levothyroxine in the first place.
It is now a standing joke with my GP that I have a bipolar thyroid. She has said she does not know enough to be of help to me
Can anyone offer any advice please. I have phone call with my Endocrinologist tomorrow.
Thank you for any guidance.
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I am swinging wildly from being under to over active & from feeling like I am going to die, palpitations, no sleep, moodiness, weight loss, diarrhoea to sleeping constantly bone & muscle pain.
Sounds like Hashimoto's (autoimmune thyroid disease). Have antibodies been tested?
Hashi's is where the immune system attacks the thyroid and gradually destroys it and fluctuations with symptoms and test results are common with Hashi's.
It's important to test Vit D, B12, Folate and Ferritin as these are often low or deficient when Hashi's is present.
Some members with Hashi's have found that a gluten free diet helps although there is no guarantee. Supplementing with selenium l-selenomethionine 200mcg daily is s also said to help.
No, you need to know your levels and that will tell you if you need to supplement and at what dose.
If you already had optimal Vit D level and you started supplementing, excess D3 gets stored and can lead to toxicity. Similarly with iron, if you start taking iron tablets without knowing if you had iron deficiency then if your iron level was optimal supplementing would take it too high.
Vit C is fine to take, it's good immune support as well as adrenal support, you'd soon know if you took too much Vit C as you'd get diarrhoea.
Ask your endocrinologist to prescribe small dose T3 (Liothyronine) alongside Levothyroxine
But first it’s essential to get FULL Thyroid and vitamin testing
Sounds like you have Hashimoto’s, especially as gluten intolerant. Do you stick to absolutely strictly gluten free diet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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