Hi . New to the group . I have had an underactive thyroid for around 16 years . They put me straight on to levothyroxine 50 and now have gone up to 150 over the years . Since I started taking it a decade and a half ago I have felt ill every day without any let up . Anxiety . Panic attacks . Brain fog . Just generally feeling awful most days . I believe it’s down to the medication . I am in the uk and I know there are other options available but neither my gp or endo will entertain me changing . I have even offered to pay for a different medication privately and still been declined . I stopped taking the levo just over two weeks ago and feel different . I have more energy but I feel wired if that makes any sense . It’s not a nice feeling .
Can anyone please give me any advice that’s been in there same sort of situation ?
I really have had enough of feeling unwell every day .
Thanks for reading xx
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melanieee
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Hi thanks for the reply . I have bloods done every six months and are always in range as to where they should be while I have been on the levo. My bloods are always ok it’s just the way that I feel that isn’t if you get what I mean 🤦♀️Xx
melanieee Blood results being within the reference range (which pertains to the thyroid functioning of healthy people) doesn't necessarily mean that they are right, or optimal for you. If you post your latest results together with their respective ranges, members will be better able to offer you help. Meanwhile, if you need to supplement a failing or absent thyroid, not taking your Levothyroxine is not the best thing to do - it is very common for people who do that, to initially feel better, and then experience a downturn (Levothyroxine has a long half life and so the effects of it being withdrawn can often only slowly become apparent).
Highly likely your GP only tests TSH or TSH plus FT4......which is completely inadequate
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are EXTREMELY common and need regular testing and supplementing to maintain adequate levels so that thyroid hormones can work
Essential to test thyroid antibodies too, at least once
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, not to be mentioned to GP or phlebotomist)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
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