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(21 Posts)
dodobookends Sat 27-Feb-16 10:02:48

Can anyone help please - how long did it take before you were diagnosed with this, and what symptoms did you have that were finally taken notice of?

I've been feeling absolutely rotten for ages (years, in fact), and my physio strongly suspects an underactive thyroid, but I've had blood tests and you ring the surgery and they say results are 'normal'.

How normal is 'normal'? Could I still have a problem with it anyway?

Please help, I'm at the end of my tether!

AttilaTheMeerkat Sat 27-Feb-16 14:46:58

Never accept "normal" particularly if only your TSH level has ever been tested. You still feel rotten for a start.

Have a look at this website with particular reference to thyroid testing:-

Clarella Sat 27-Feb-16 15:00:42

I'd ask for the actual results (numbers, print out so you have ref ranges) and come back to post here.

KaraokeQueenOfTheNorth Sat 27-Feb-16 15:12:01

I've just been diagnosed with this after feeling awful for years. Over the last few years I have been given iron tablets, anti depressants, counselling, all for symptoms which I believe are part of my underactive thyroid. I eventfully went back to the doctors for an issue with my weight, my thyroid was re tested and I seem to have hit the magic number where they will prescribe medication. I've only been on it a few days so I've no idea whether it will help, but I am hopeful. I have been feeling gradually worse and worse for the last 4 years, tired, dizzy, achy, depressed... But it seemed that it was the weight gain that finally got the attention of the GP which is why another test was done.

Clarella Sat 27-Feb-16 15:17:20

Yes there is a 'magic' number unfortunately. Do try to find out your results via a print out.

dodobookends Sat 27-Feb-16 15:53:40

I've got an appointment this week, they did the last blood test in November and I've only been told 'normal' over the phone when I rang up. I'm going to ask for a hard copy of it, and also get her to go through each and every thing they tested for and get her to explain the results to me. I'd like to know the normal range for each thing, and whereabouts I fall within that range.

Totally fed up with feeling like shit horrible all the time!

Clarella Sat 27-Feb-16 16:25:00

Sorry for the impertinent question but are you constipated? That is a key sign for me (though definitely not definitive - people with good thyroid function can still be constipated!)

Have they checked vitamin d etc?

dodobookends Mon 29-Feb-16 14:02:01

Not impertinent at all Clarella - on and off!

I don't know what they tested me for the last time, I am going to find out exactly what they did and what the results are when I see the GP later this week.

Xmasbaby11 Tue 01-Mar-16 22:33:09

I have an under active thyroid and I don't know the numbers but I take 150mg levothoroxin every day. I started off on 75 and it's gone up and down over the years. I have a blood test every 6 months to ensure it's correct.

When I was diagnosed, 10 years ago, I had no symptoms. Nothing changed once I took the tablets. If I forget to take them for a couple of days, I don't feel any different.

If you are in the normal range and even just borderline, it seems very unlikely your thyroid is causing your problems. I would consider what else might be the cause.

Pleasemrstweedie Wed 02-Mar-16 12:12:51

That’s a bit controversial. It is possible to have a thyroid problem and require treatment whilst having a TSH that looks ideal.

It’s not about being within the reference range, it’s about being optimal, which is something different.

With the following results, all within the reference ranges, I was extremely hypo and very ill indeed.

FT33.8 (2.8-7)

Thyroid hormones have an impact on every organ and structure in the body and one of the thyroid charities has a list of over 300 mental and physical symptoms. Treating my thyroid stopped my panic attacks and cured my psoriasis, neither of which I had ever thought might be connected.

dodobookends Wed 02-Mar-16 22:19:46

That's interesting about the thyroid charities and their lists of symptoms Please as I found one of those lists. I ticked more than three-quarters of all the symptoms, but took it with a pinch of salt as I didn't like to take internet self-diagnosing all that seriously!

Hmm. Xmasbaby I have too many other niggling symptoms, and with them all combined every day, I've felt horribly under the weather for so long (decades actually). Need to get to the bottom of it.

Seeing GP tomorrow.

dodobookends Thu 03-Mar-16 18:33:07

Well, doctor was totally uninterested, but I did get a printed copy of the results. Apart from all the other stuff tested, the only thyroid test they did was the TSH level which came out at 3.62

I think this is on the high side of normal, what do you knowledgeable folks think? The doctor refused point blank to do any of the other thyroid tests and was adamant that I was in the normal range so that was that as far as she was concerned!

piratedino Thu 03-Mar-16 18:47:38

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Clarella Thu 03-Mar-16 19:13:35

Dodo I would say that's the high side of normal (please post ref ranges) but under current nice guidelines treatment "tends" to start around 10. There's a nasty grey area between around 4.5-10. If symptoms are there, nice say treatment can be trialled.

Interestingly, if miscarriages have occurred and you are investigated, and had that Tsh, nice guidelines would suggest you are treated to bring it below 2.5 (or 2 - I can't remember, but it's written in the nice guidelines)

A friend had a similar Tsh due to bipolar meds, after a miscarriage a consultant said she should be treated as she wanted to conceive. But she had her mh consultant saying no, and pushed to be referred to an endo (only by letter) who said absolutely yes.

She has now conceived and actually Tsh is so good during pregnancy she's been taken off it - but has absolutely no antibodies.

It's hard to push but if you had antibodies i'd say it warranted treatment. Hard to say if a GP would agree - but definitely I feel get another test in 6 months to see what it's doing at the very least.

Health unlocked might be able to advise further. Thyroids CAN wobble following illness, but if you've had symptoms for a while it sound like it's starting to struggle.

Wonders about loopholes...

dodobookends Thu 03-Mar-16 20:55:08

Piratedino/Clarella I don't know how you've both managed to post the identical thing!!! Or are you someone who namechanged mid-post? Weird.

My symptoms are not to do with miscarriages, I don't know where you got that impression.

The normal range according to the test results is (0.25 - 4.0) and mine comes out at 3.62 so that is on the high side of what they perceive as normal by any stretch of the imagination.

Clarella Thu 03-Mar-16 21:07:17

Miscarriages - if anyone has repeat miscarriages and Tsh creeping up, they are treated. (Check nice guidelines). Over 2.5 there can be a higher risk. The whole thing is very annoying - there's not many I'd bet who are in thyroxine who feel 100% at 3 + , though it's not totally clear cut (if you have a thyroid, some of the hormone t3 is made by the thyroid. People on full dose thyroxine can't make their own t3 so the body has to convert it all from t4) My point is, that's creeping up a bit, perhaps return to GP in 6 months for another test?

Others might have other advise!

Clarella Thu 03-Mar-16 21:07:40


dodobookends Fri 04-Mar-16 00:42:22

Thanks Clarella but I am post-menopausal so it won't have any relevance to me.

Pleasemrstweedie Tue 08-Mar-16 19:56:52

OP, your TSH is rising and us now insight of the top,of the reference range.

TSH alone is not an adequate test and it would definitely be worth your getting a full thyroid screen privately, from Genova Diagnostics or Blue Horizon, which would give you the full picture.

dodobookends Wed 09-Mar-16 01:08:40

I had another blood test today, and I will be making an appointment with another GP at the practice, when the results come through.

Does anyone know roughly how much private thyroid testing costs?

pashmina696 Wed 09-Mar-16 16:05:49

My Gp did bring up subclinical hypothyroidism when i was first diagnosed and was agreeing to give me levothyroxine, however my second set of bloods came back conclusive anyway. I would mention "subclinical" as this is something GPs are now advised to treat it would seem. good luck.

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