Were you mis-diagnosed with something else befo... - Thyroid UK

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Were you mis-diagnosed with something else before your thyroid disorder was discovered or acknowledged?

RedApple profile image
RedAppleAdministrator
9 Replies

If yes, what were you mis-diagnosed with, and what treatment were you given for it?

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RedApple
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9 Replies
Chippysue profile image
Chippysue

I was told that I was going through the menopause and prescribed HRT and then when I felt no improvement I was asked to complete a questionnaire and then told that I was suffering from depression and prescribed anti-depressants, which of course did not cure my symptoms as I am hypothyroid.

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Chippysue

I was told I was depressed and would I like some anti-depressants? I told my doctor I wasn't depressed - I was ****** fed up because no-one knew what was wrong with me!

Julia profile image
Julia

Yes I was mis-diagnosed several times, told I was going through the menopause, given a booklet to read and it was normal to put on weight when you get to 'my age'!

Barbara profile image
Barbara

Briefly, as my story is long.... After years of problems I was eventually diagnosed with PVS (post viral syndrome) by a rheumatologist. I asked my GP if that was the same as ME and he said it was. I was later diagnosed as hypothyroid and then found that I had also been diagnosed with CFS and possible Fibromyalgia too along the way, as well as being offered anti-depressants too.

My 'CFS' was later confirmed by another rheumatologist when I sought to have that diagnosis overturned in view of the hypothryoidism diagnosis. (CFS is meant to be diagnosed by excluding other causes of similar symptoms.) My TSH was till over 4 at that point and not fully treated!

I couldn't tolerate thyroxine so was referred to an endocrinologist. He didn't think I had a thryoid problem at all, despite TSH over 12 and T4 below range, - it was a 'stress disorder' instead - & took me off the thyroxine. My TSH went up to 60, antibodies over 6,500. "Oh, you are hypothyroid after all, go back on thyroxine." Stalemate.

I tried thyroxine again but awful symptoms. Prozac offered and declined for these... Threatened with psychiatrist so I paid to see a psychologist privately – in her opinion there was nothing wrong with my mental health at all. Her report sparked a marked change in my GPs attitude. I saw a private thyroid doctor on the Thyroid UK list, was prescribed Armour and T3 and gradually became well again.

in reply to Barbara

Oh hello - I am going to be really boring here and say me to!! Depression - SSRI drugs - a little relief but still other symptoms continued. Menapausal/peri - HRT - made me blow up like a balloon and feel like poo,

stress because I am a Social Worker - yes it can be difficult and frustrating at times but I work with adults and 30 hrs a week - I think I would cope better with the irritations of the job if I wasn't so flipping tired!

I read somewhere about the FFF syndrome - female/forties/fifties - that is so accurate- its your age and your menapausal - get on with it blah blah! I have spent the past month researching thyroid issues and it is so scary how many of us are being misdiagnosed and refused the appropriate tests. I am off to my first Endo appt Thurs and last week my GP pompously sat back in his big chair and said he hoped that I wasn't going to be too disappointed with my hospital visit - I wish I could have read his mind - good job he couldn't read mine - it felt like he was humouring me!

Bye for now

Stacey

Barbara profile image
Barbara in reply to Barbara

You can't read his mind (sadly, that would be sooooo useful!) but you can ask to see a copy of his referral letter. These can be quite illuminating!

in reply to Barbara

It was an automatic referral thing online, I don't think there was a letter. However, I faxed my symptoms list etc to the Endo 3 days before my appt so they had time to absorb! And they went through it and we discussed each symptom etc and then whilst I was in the room he dictated the letter back to my GP to say no no no to menapause and depression that my symptoms were highly suggestive of thyroid issues and blah blah etc.

GP was a little less than pompous on my follow up visit and I got the thyroxin - ok, only 25mcgs to start - but it was a start! Still not finished and I am on the process of changing surgeries.

S

Whatamess2 profile image
Whatamess2

Yes. I was told that I had ME for 13 years but they couldn't understand why I was getting worse. Eventually when my body was totally giving up I was diagnosed with an under active thyroid with a TSH reading of 236. After 8+ years of this condition still not well although much better than originally but still getting swings from under to over active on a regular basis.

Jackie profile image
Jackie

I was in hospital for 6 months thought, wrongly to have somatoform that was 12 years ago now removed from records but still causing unbelievable problems by my then GP and she keeps telling hospitals I have it now and not even saying it was due to falls and lots of letters from the then consultant saying it was wrong diagnosis and he is top of his profession,a nightmare.

Jackie

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