I believe I have underactive thyroid. - Thyroid UK

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I believe I have underactive thyroid.

Katharine-hughes profile image
7 Replies

I was first diagnosed with underactive thyroid about 10 years ago which was treated with Levothyroxine for 4 years. In 2010 I moved GP surgery and was told I no longer need Levothyroxine as my levels were "normal", I have since then been suffering with all the usual symptoms of over tiredness, weight gain, dizziness, headaches, muscle cramps, breathlessness and generally feeling awful. I have been to the GP serval times for blood tests and been told my levels are normal. The last week my symptoms have got worse with terrible dizziness and even fainting. I requested my thyroid be tested again and the level was 5.2 and told again this was normal. I don't understand and I'm really confused as underactive thyroid does not come and go! I can't go on feeling this bad, please can anyone help with any advice??

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Katharine-hughes profile image
Katharine-hughes
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7 Replies
radd profile image
radd

Katharine,

Welcome to our forum and sorry to hear that you are not feeling well.

Have you been tested for thyroid antibodies TPOAb and TGAb ? ? .. Either will determine Hashimotos Autoimmune Disease which is the most common cause of hypothyroidism. Through a gradual destruction of the gland Hashimotos causes thyroid hormones to fluctuate and inexperienced doctors to misread test results.

Your doctor is probably waiting until your TSH reaches 10 before prescribing (as per guidelines) but once on thyroid hormone replacement you should not be taken off and a TSH of 5.2 is too high. Are you able to get a second opinion from another GP in the practice, pointing out you were previously prescribed Levothyroxine ? ? ..

Seriously your doctor sounds like an idiot. I know its hard when you feel like rubbish to fight but please go see another doctor. Your tsh is high and in some countries you would be classed as hypo now but you don't know fully until you see what your T4, T3 levels and antibodies levels are . Yes you are correct. It doesn't just go. It's about maintaining the optimum levels, not getting to them and then shopping all meds, that will mess the thyroid up more.

TupennyRush profile image
TupennyRush

NICE guidelines say you're sub clinical, they also state that if you are sun clinical with symptoms then a doctor should 'trial' you with levo. I'd agree with the above to go to a different doctor as this one doesn't appear to have read rhe guidance but you might try one last go and quote the NICE guideline. If you can't find them by Google let me know and I'll post the link when I'm on pc

greygoose profile image
greygoose

Why did your stupid doctor not realise that the reason your results were 'normal' was because you were on Levo! I really don't understand that mentality. Levo is not a cure, it's a hormone replacement, and people usually need if for life.

If you have Hashi's, you can have brief relapses, but that does not mean you stop taking the Levo. This doctor is really ignorant - and dangerous! Can you change him?

You are no longer 'normal', your TSH is much too high. You became hypo the minute it hit 3 (roughly speaking). Try telling him how ill you feel, and that if he doesn't put you back on Levo, you will buy your own on-line and put yourself back on it! x

sweetsusie profile image
sweetsusie in reply togreygoose

Exactly! She's better because she's on her meds...now the doctor takes her off...that makes no sense at all! Why are they like this??

greygoose profile image
greygoose in reply tosweetsusie

Lack of education. Big Pharma funds their education, so Big Pharma decides what they learn and what they don't. And Big Pharma doesn't want us to get well.

But, what always amazes me is the fact that these doctors seem incapable of using logic, and thinking for themselves. They are just robots, for the most part.

sweetsusie profile image
sweetsusie in reply togreygoose

I agree...it's all about the $$ and unfortunately, we are the ones who suffer.

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