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Autoimmune disease

Thyroid

11 replies

missmona · 11/10/2018 17:41

Hi, new here. Can I get some advise, I feel like I'm going out my mind here. So I'm suffering really bad with symptoms at the minute with my thyroid, I've gained weight, gone from a size 8 to 14, I'm constantly exhausted and always sleeping, my muscle and joints are stiff and painful and at times I can barely stand let alone walk. Loosing more hair than usual, and I'm constantly sweating, occasionally I'll have moments where I'm absolutely freezing but then finding myself stripping off again an hour later.

I've not yet been diagnosed, had 3 tests already and latest came back boarderline, due to have 4th year end of this month, hoping by then I'll have more of an idea where I am and what I can do, in the meantime is there anyone who can give me tips or advice on self help till my next appointment?

TIA xx

OP posts:
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ltsnotok · 11/10/2018 22:38

Suggest you get a print of your results. Make sure they've tested at least TSH, FT4, antibodies for thyroid plus vit d, b12 and ferritin. If you are borderline and symptomatic, some gps will do a trial of throxine. You can also ask for referral to see an endocrinologist

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hungryhippie · 11/10/2018 22:45

my GP let me trial levothyroxine when I was borderline. you should ask

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missmona · 11/10/2018 22:55

Thank you both for your replies, I did not know a trail was an option. I think I'm going to ask for that as my symptoms are getting worse.

Also could anyone explain what TSH and all that is I keep swing them being posted and I can't make head or tail of it

Xx

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MelonBuffet · 11/10/2018 23:43

TSH is thyroid stimulating hormone. It's not produced by your thyroid, but it tells it what to do, eg "produce more thyroid hormones!" so if your TSH is high, it's because it's trying to tell your thyroid to step up its game, which it may not be capable of doing if it's buggered.

FWIW the 'normal' range of 2-5 is often still too high for people with thyroid problems and many of us don't feel well at anything over 2. Sometimes GPs will say you're borderline if you're at 5-10 and wait for it to tip over 10, which is awful. (Mine was 200 when I finally got diagnosed Angry )

However, many believe that, as the TSH isn't even produced by the thyroid (think its the pituatary gland), it's a pretty pointless test, and that its important to know all of the other levels too (the thyroid produces 5 different hormones, the most important being T3 & T4. Levothyroxine is the usual medication given, which is a T4 only medicine).

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MelonBuffet · 11/10/2018 23:48

If you're borderline you may find that cutting out gluten can help and there are other ways of managing things to try and prevent the damage that may already have been done (the auto-immune protocol diet - AIP - for example.) I can't attest to how reliable these things are as sadly I found out too late to do anything about it, but it might be worth a try while you are being assessed.

Once you've found out your results (and don't let the receptionist fob you off with "levels are normal" - you're allowed to know the numbers as the reference range to see where those numbers fall within it) post them here and someone can help you. Flowers

You have my sympathy, its such a debilitating shit illness, affecting literally every cell in your body and it seems to be so badly understood and treated by the NHS. I hope you can get on top of it.

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MelonBuffet · 11/10/2018 23:49

prevent the damage that may already have been done Confused
sorry it's late - you know what I mean!

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madmumoffourBHTJ · 12/10/2018 00:15

It's missmona, I've changed my username.

Thank you for breaking that down for me it's helped a lot. My mum is under active and has been for about 20 years, I think she's had 2 different types of medication. She told me the basics but nothing in depth. My aunt also had under active and she opted to have the radio active pill.

When I was told I was borderline my symptoms weren't as bad as they are now, so maybe I've gone over that mark? I think it may be possible, I don't remember my mum being this bad, if she was she hid it good.

I've been told because I'm borderline I can request a trial on one the medications to see if it helps so it's something I might look into, I'm dreading what could be worse than this.

Xx

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sandgrown · 12/10/2018 06:59

Melon your information is really useful. A couple of years ago I was diagnosed with overactive (I think) I had the radioactive pill which returned things to normal but lately I have had symptoms similar to those described by the OP. I feel.like I am going through a second menopause!
Nobody explained all the numbers to me . I am just waiting for the results of a blood test so I will ask for more info this time.

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NaToth · 12/10/2018 12:50

if you had radioactive iodine for an overactive thyroid, you should have been put on thyroid hormone replacement immediately after that procedure. The whole point of RAI is that it kills your natural thyroid function and that needs to be compensated for. Being borderline, whatever that means, doesn't come into it.

A referral to an endocrinologist might not be a bad idea.

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Harmonyrays · 02/11/2018 21:58

Melonbuffet- what do you mean about damage done? What long term damage does an under actice throid cause?

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Lara53 · 19/11/2018 14:04

Long term under active thyroid carries risk of eye disease, heart disease, stroke, arthritis, weight gain putting stress on body in general. I'm sure there's more too.

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