Fibromyalgia and high PV results?: I've been back... - Thyroid UK

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Fibromyalgia and high PV results?

maddy01 profile image
10 Replies

I've been back to the docs for more blood tests. The results have come back and they only tested for TSH this time which has come right down to 3.5 (0.27-4.20) not amazing but now classed as 'normal' so i know i'm not going to get anymore help on that front.

Previously i had explained to the Dr that everywhere seems to hurt / ache etc. so she included extra test to check for information.

On my return visit I confirmed that i felt a lot better mentally - less fog, forgetfulness, confusion etc but that if anything the aches & pains were getting worse.

She confirmed that my test indicate some inflammation - Plasma viscosity 1.96 mPa.s (1.50-1.75).

she wants me back in for more in depth blood tests but has also mentioned fibromyalgia and i have to go back to run through some kind of check list but i need to go a read up on the condition and see if i think thats what i've got...so am i self diagnosing then?!

To be honest i've come out feeling more confused than when i went in. i asked if the blood test shows this fibromyalgia and she said no?!

Any help or advice would be appreciated.x

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maddy01
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shaws profile image
shawsAdministrator

In some countries you would be classed as hypo with a TSH of 3.5. You do have symptoms.

thyroiduk.org.uk/tuk/testin...

On the above link on the l/hand side there are hint's like 'getting a diagnosis'. A couple of links:

web.archive.org/web/2010103...

web.archive.org/web/2010081...

Re your pain this is a post I did yesterday between two doctors, one who (he died two years ago) was Director of the Fibromyalgia Research Foundation as well as other sites such as Thyroidscience and Drlowe.com.

healthunlocked.com/thyroidu...

louise.warvill@thyroiduk.org who has a list of private doctors if you are able to consult privately.

If you want to get well you have to read as much as possible and the pain you are having at present is very disabling and they are willing to prescribe for the symptoms but not diagnose - some do when you reach around 5 and some to 10.

Did they test your antibodies?

maddy01 profile image
maddy01 in reply to shaws

Thanks Shaws, that will be my lunchtime reading :)

it's just annoying as when i asked the Dr if it is fibro is it linked to UAT and she said no?!.

can I ask what you mean by your last comment about reaching 5 or 10? and i'm assuming my antibodies haven't been test as nothings been mention and haven't read it on my latest bloods results?

shaws profile image
shawsAdministrator in reply to maddy01

Sorry, I meant the TSH as that's all the doctors have been told to diagnose upon. The TSH (stands for Thyroid Stimulating Hormone) and The BTA states we should be medicated only when it reaches 10. Some never reach that high and may be diagnosed with our problems instead of their thyroid gland. The TSH is actually from the pituitary gland. They do not believe fibro and UAT are connected but widespread pain is a common symptom of UAT. That's another thing they appear not to know one clinical symptom of UAT and are only concerned of the whereabouts of the TSH. Labs may not do other tests if your TSH is 'normal rangel'.

polly3 profile image
polly3

I would also print off as much info as possible on fibro. And treatment to take with you. I don't think there is a blood test for fibro it is a check list of pressure points around the body but I might be wrong but let her do her blood test but be armed just in case. Good luck. X

Marz profile image
Marz

easy-immune-health.com/fibr...

I was once diagnosed with Fibro back in 2000. The Thyroid - Hashimotos - in 2005. Now fine - as my treatment has been improved so have my painful bits.

Bet your FT3 is on the floor. Any chance of having your tests done privately through Thyroid UK ?

healthunlocked.com/search/f...

maddy01 profile image
maddy01 in reply to Marz

sorry Marz should have said, I've considered private testing but think i'm going to wait for the Dr to rule out other things before making my decision, mainly as she has said fibro isn't shown in the blood test so i want to know what the inflammation is indicating...if anything!

Marz profile image
Marz in reply to maddy01

Could be thyroiditis - inflammation of your thyroid :-)

maddy01 profile image
maddy01

thanks all.

I feel really whingy at the moment...why me!! only went to Dr's for a blood test to check for a hereditary heart condition last September and its all spiraled to this. the Dr said its all coincidence but i just can't see it?

My main concern is the raised PV and what ever that means as Dr said Fibro doesn't show on blood test so why is it raised, what else could it be?

and to be told to come back in 3/4 weeks for more in depth tests..why wait??? grrrr its all so frustrating! along with being told by my partner i'm being lazy at the moment not my fault apparently but lazy all the same. He doesn't mean it to come out that way but doesn't understand whats going on either and he's stressed with all the extra stuff he now has to do (we won't mention that i used to do all the 'extra' stuff automatically)

greygoose profile image
greygoose in reply to maddy01

It could be thyroid, but she'll never know if she doesn't do the right tests! I think she's more confused that you are. There is no blood test for Fibro. It's really just your doctors opinion.

It isn't even a disease. It's a syndrome. A syndrome is a bunch of symptoms - you can't diagnose someone with a symptom - a symptom is being caused by something, and it's her job to find out what. But if she's not even going to do all the thyroid tests... Fibro is often un/Under-treated thyroid. But it could be caused by fatigued adrenals, nutritional deficiencies. Is she going to test all those?

BUT they get funding for 'diagnosing' fibro, they Don't for thyroid, so it's far more interesting for her to say it's fibro. Plus, it's a get-out 'diagnosis' - and there's no test for it, and no cure - not even much of a treatment - she doesn't have to do much, does she, just pronounce the workd 'fibro' and her troubles are over, but yours are just beginning. If I were you, I wouldn't accept a diagnosis of fibro, it will stick to you for the rest of your life, and no-one else is ever likely to look any further than that.

Hugs, Grey

maddy01 profile image
maddy01

Thanks grey means alot :-)

I'm not letting it drop I've gone from being the most level headed, Unstressed person to a complete painful mess, and only since being diagnosed last sept. And I refuse to accept its all coincidence but know full well I'm going to have to jump through hoops for some time yet!

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