Hi I was diagnosed around 15 months ago with Hashis and told by the Endo that I may feel unwell until my thyroid was completley destroyed, which could take up to 2 years? Does anyone know if this is true? If so, do you feel better afterwards?
I've recently been feeling worse and my thyroid is painful every day (I had this same pain when I first went onto Thyroxine but it went away after a couple of days) I am on 75mg and my TSH is 0.93. My doctor is stumped about the pain and wonders if it is a thyroid infection as I have cold like symptoms and feeling pretty rough all the time. He has felt my thyroid and unable to feel any lumps etc. (had this for around 5 weeks now!!) He's taken my FBC and Inflamation blood tests and all normal.
Since then I've been discharged by Endo and put under GP's care, ha!
Fed up of feeling so lousy and wondered if anyone could help.
xx
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librarygirl41
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I often wonder where doctors get their figures from. Why would he think it would take 2 years? It's impossible to say how long it will take because it's a highly individual thing.
As to whether you'll feel better or not afterwards... Well, the thing is, once it's dead, you have no more thyroid hormones, and you are entirely dependant on thyroid hormone replacement, therefore entirely at the mercy of your doctor to give you enough hormone to make you feel well. And there's the rub, they don't like doing that!
Ideally, at the moment, you should have your TSH suppressed. But this terrifies doctors. They are much happier if your TSH is up near the top of the range - which is totally wrong. Try putting it to them this way: you say I'm going to feel better once my thyroid is dead, so why don't we make believe that it's dead now by putting it out of action by suppressing my TSH!
You're still only on a tiny dose - a starter dose - of levo, so it's no wonder you don't feel well. The cold-like symptoms and pain could be telling you that you need more levo. But, in, the meantime, get your iron, B12, vit D tested because you'll probably be low on them. Have you had any other thyroid tests apart from the TSH? FT4? FT3? If not, try and get them done too. They can give a lot of information.
Please, never accept the word "normal" in relation to a test. Ask for the actual numbers and the reference ranges. Even if you don't want them right now, by so dong you are more in control.
If you are getting such pain, I would like to think you were referred for an ultrasound scan and to an endocrinologist to look further.
Rod
I was diagnosed at the same time - initially multi nodular goiter and then hashis. My Endo said that there was no scientific knowledge of how long the process would take to destroy the thyroid. The goiter could also grow or else diminish. We discussed an EU study which indicated that the average length of time was 17 years - but he mentioned another study which stated that no time could ever be specified. In the meantime, I have 6 monthly blood tests (I get copies) and my thyroid is working OK and I also feel fine. Assured that I should return if breathing problems or if the goiter became so large that it should be removed for cosmetic purposes. There are some examples on line of how big these things get!
I was diagnosed with Hashimoto's about 2 months ago. I am only on 2 days of 37.5mcg / 1 day of 50 mcg of Levo. I feel reasonably well now and I think I am near my right level.
I strongly urge anybody with Hashimoto's to get hold of Dr Haskell's book "Hope For Hashimoto's" - available on Amazon. This book has most certainly given me hope especially after the doom and gloom from my GP, who just told me that there was no cure, that I would eventually be on a very high dose of medication and that the NHS are not interested in my antibodies. Well I am most interested in my antibodies and I am doing everything I can to reduce them - including a gluten-free diet and increasing my levels of glutathione which fights inflammation of the thyroid. Dr Haskell has a 3 phase plan the aim of which is to restore your thyroid, depending of course on how much damage may have occurred. I personally just can't sit and wait for my antibodies to destroy my thyroid without putting up some kind of fight.
This is my first blog and my thanks go to everybody on this site. I have got loads of valuable advice on how to take my Levo and which supplements to take. It's very reassuring to know that you are all here if I need support. Good Luck to Everybody.
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