I have just joined this space and have been reading some of the posts. It seems like a very helpful and supportive community and I was wondering if I could ask for advice on my current situation.
I have been diagnosed with hypothyroidism about a year and a half ago. I've been on Levothyroxine since. At the begging of the treatment I immediately experienced a relief from the symptoms I had been feeling. I lost weight, my neck wasn't swollen anymore, no more bloating, I wasn't tired, and my mood was much better.
I had started my treatment with 25 mg for 3 months (July-September) then my dose increased to 50 mg. Unfortunately all of the symptoms came back in April. I got a blood test done and my gp told me I was fine. I knew that something wasn't right so in June I decided to see an endocrinologist. She put me on 75 mg for four days of the week and 50 mg for the remaining three. I have not seen any improvement...
The symptoms I have been experiencing since April have been major bloating, fatigue, swollen neck, weight gain, puffy face, major hair loss, moodiness, and dry skin. My endocrinologist said to get a blood test in 6 months. My latest blood test was the 23rd of September: T4 = 15.7 pmol/L TST = 3.53 pmol/L. I also have very low vitamin D and have been taking supplements (prescribed by gp) weekly.
My suspicion is that I might have developed Hashimoto's. I know that getting T3 levels tested is not a standardized process with the NHS. However, I think it might be useful to understanding why I'm still not feeling well. Any suggestions on how to approach the situation? I feel like whenever I see my gp he just doesn't listen and only looks at the numbers, which sadly seems to be the case for others too.
Any tips on asking to get my T3 levels checked? Also, should I get anything else checked (vitamins)?
Thank you so much, and apologies for the length of this message!
Fran
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francesca001
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If by TST you mean TSH then the result is high for someone on levothyroxine. We do need the ranges for those results though to be really sure. Once on levo we look for TSH to be 1 or lower. I think that you are undermedicated.
I'm not sure we do just develop Hashi's like that. Have you never had your antibodies tested?
Also, if your doctor is looking at the numbers, he should see that your TSH is too high. Should be 1 or under when on thyroid hormone replacement. Therefore, you are under-medicated.
It's once you get your TSH down to about 1 that you need to get the FT3 tested. It's pretty certain it's going to be low at the moment, with a TSH of over 3.
Are you aware, when getting a blood test for your thyroid hormones, that it has to be at the earliest possible, fasting (you can drink water) and allow a gap of 24hours between last dose and test and take afterwards. This helps to prevent the doctor adjusting dose down when you probably need an increase in dose.
Few doctors seem to know how best to treat patients, i.e. when first diagnosed the usual dose of levothyroxine (inactive hormone also known as T4) is 50mcg with 25mcg increase every six weeks after a blood test until TSH is 1 or lower. Some doctors seem to believe that a TSH lower than 1 means we've gone hyperthyroid but that's not the case. Sometimes they reduce our dose but we may get symptomatic again.
The aim is a TSH of 1 with a Free T4 and Free T3 in the upper part of the ranges but the latter two are rarely tested and some members get their own private tests.
Levothyroxine is an inactive hormone (also known as T4) and has to convert to T3 (liothyronine) - the Active hormone) and it is T3 which is needed in the millions of T3 receptor cells.
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, best not mentioned to GP or phlebotomist)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I will pass to you the greatest advice that I was given - Dr Isabella Wentz - her books and especially her documentary series called the thyroid secret
Be sure that you're not deficient on selenium and zinc. They're needed for proper thyroid functions and selenium helps neutralize the toxic oxidant hydrogen peroxide. Also look into Lugol's iodine, but very carefully especially when suspecting Hashimoto's.
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