Frustrated : A month ago had appointment with... - Vasculitis UK

Vasculitis UK

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Frustrated

yorkshiregirl44 profile image
14 Replies

A month ago had appointment with rheumy with various symtoms....pain, fatigue, swelling, heat intolerance..generally feeling very unwell and many more...

Just got blood results back and i can not see any bloods done to identify causes of inflamation.....

Results showed low serum urea, low serum ALT and thyroid.

I feel very frustrated as the rheumy ran no further tests and even though he said i did have swelling he did not look to find the cause, he ruled out RA but still no blood results in that area.

Am i missing something here..... any thoughts please...

Thanks

Christine

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yorkshiregirl44 profile image
yorkshiregirl44
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14 Replies
HiveMind profile image
HiveMind

To check for inflammation you need to have your ESR & CRP checked. I have Vasculitis, EGPA (Churg Strauss Syndrome) and have these and many more blood markers checked.

Hope this helps.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toHiveMind

Thanks thats what i thought..no, none of these tests were done and even RA was ruled out but no bloods done to confirm this. I know that some people can have inflamation that does not always show up in bloods at the time of testing, in my case no follow up tests have been arranged.

JontyW profile image
JontyW in reply toHiveMind

BerkshireBird,

Do you have both ESR and CRP checked? My rheumy only does the CRP marker since I 'believe' it is supposed to be a better measure of inflammation ... is that correct?

Thanks....

PMRpro profile image
PMRpro in reply toJontyW

CRP is said to be more reliable because it is more sensitive, rising sooner after inflammation starts but in terms of being specific it still isn't particularly, except for the high sensitivity bit that responds to cardiac issues. ESR can go up with a cold, other viral infections, can be sky-high with a UTI/kidney infection and is affected by age and various things relating to how the blood sample is taken and stored - so for better results should be done within 4 hours of being taken. That is often impossible so an ESR is then a waste of time.

One study reckoned that if both ESR and CRP are done it improves the info provided so the specificity and sensitivity are increased. But both are limited to telling you there is some inflammation present somewhere in the body - for example there is a study where they looked at how good they were in indicating an infection in the knee of patients presenting for an arthroplasty. Yes they were raised - but nothing to do with PMR or GCA!

They are indicators, to be done alongside the clinical diagnosis. But they don't "confirm" anything, one way or the other. I just wish they'd remember that when telling a patient "the blood tests confirm you have..."

yorkshiregirl44 profile image
yorkshiregirl44 in reply toPMRpro

Thanks... the rehumy didnt run either esr or crp becauseit had already been decided that i had fibromyalgia as my gp said he would say this.

PMRpro profile image
PMRpro in reply toyorkshiregirl44

Excuse me? Then WHY send you to a rheumy then if he wasn't being expected to diagnose the real problem? Fibromyalgia is becoming the current "answer to all" in the UK as well as the USA - you can't confirm it one way or the other and there isn't a lot in the way of treatment options. Exit stage left one more problem patient who makes the GP uncomfortable. Bah!

yorkshiregirl44 profile image
yorkshiregirl44 in reply toPMRpro

I had already been given a fibro diagnosis and my gp said that is all the rheumy would say. I didnt even fit the criteria for fibro and in my case its a fob off. I need to find a knowlegable rheumy who will investigate further.

PMRpro profile image
PMRpro in reply toyorkshiregirl44

Are you in Yorkshire? The Leeds group may be helpful - they have at least one PMR/GCA expert but she is lovely and might be able to point you elsewhere.

HiveMind profile image
HiveMind in reply toJontyW

Yep. I have both checked. I'm not sure about whether CRP is a better measure of inflammation than ESR. Maybe someone else could enlighten you.

Katniss12 profile image
Katniss12

Just a note, I have Behcets and when I have been flaring had the ESR & CRP ran a few times, and they were always normal. When I was finally diagnosed, the doctor ran anticardiolipin IGG as part of a larger panel and it was moderate to high positive twice. This is a non-specific inflammatory marker. I believe it is my marker for Behcets activity. I had the blood test done again after a year of flaring and it came down to just below low positive, which would not normally be found in the general population. I also tested positive for HLA B51. So your doctor should do them, but don't let them tell you your fine if they are normal. Good Luck...

yorkshiregirl44 profile image
yorkshiregirl44 in reply toKatniss12

Thank you..... what you have said is so encouraging. Iv another GP appointment next week and will ask aboyt these. I need to find out whats going on and very tired of going backwards and forwards,

Katniss12 profile image
Katniss12

Yes I know... it has been 17 years for me of terrible doctor appts. That were not helpful until my pressing this year.

Tinabelle profile image
Tinabelle

CRP is great and RA factor. Lupus could also be a cause of fatigue and joint pain. That would require Anti-dsDNA, Anti-Sm, Anti-Ro, Anti-La and ANA tests.

yorkshiregirl44 profile image
yorkshiregirl44 in reply toTinabelle

Back to the drawing board for me....its so frustrating but thanks.

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