cryoglobulin test,: Has anyone had this test a... - NRAS

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cryoglobulin test,

Ardea profile image
7 Replies

Has anyone had this test a cryoglobulin blood test,I am a little worried about what the results will show. I have just had my blood done today as requested by my rheumatologist but no-one could tell me what they were testing for. I was told that the consultant would be the only one so now I will have to wait for my results.

I have just lost my sister-in-law to Leukemia, so now my husband things I might have the same.

I have rheumatoid, fibro and oesto. Also they have advised I have a cyst on my thyroid but at this stage waiting for further tests on this.

A worried Ardea

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Ardea profile image
Ardea
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7 Replies
nomoreheels profile image
nomoreheels

It's so unhelpful when nobody informs you what's going on & do wish they'd be more considerate, especially when a patient asks. Some want us to be proactive but others prefer us to be kept the dark & retain the "wonders" of medicine for themselves. This type of test is not that unusual for people with RD Ardea as it's performed sometimes if the if RA factor is particularly high or your liver function test is showing an abnormal result if yours are normally pretty level. Often it's used as part of diagnosis for secondary problems like Raynaud's or Sjorgen's. I've had it done but didn't know until my Consultant went through the results with me as it's taken just as a regular blood test is, along with the normal ones. It was listed on the bloods request form but I didn't notice it (not like me!) as it was one of 40 odd I used to have taken each time I saw him - it's just tested in the lab differently. It is also used as part of testing for leukaemia but many blood tests, like the LFTs & white blood cell counts etc we have taken regularly, are used to diagnose very different conditions.

I would think having lost such a close family member to leukaemia so recently he's naturally focussed on the fact that the cryoglobulin test is also performed for that. Maybe having a read of this link will put your husband's (& I would think your) mind at ease.

labtestsonline.org.uk/under...

Do keep us updated.

Ardea profile image
Ardea in reply tonomoreheels

Thank you so much for your reply nomoreheels. I will take a read of the link you you sent. I have lost a lot of weight and feel that my hair is thinning too. (my pride and joy :( )

I will try and stay positive - I just wish someone had told me what they were looking for!

Lack of communication sometimes.

Thanks again

nomoreheels profile image
nomoreheels in reply toArdea

I hope it helps you both. It's a reliable site & one I use regularly (I'm a bit like a dog with a bone lol). Many of the meds we need to take a can cause hair loss & I've have some too but compared to how I am without them it's a small price to pay, for me anyway, but I know exactly how you feel as it forms part of who we are, our normal self doesn't it?

Maybe it's the way I ask but if a nurse gives me the "you don't need to know" or "I don't know" treatment I ask them to ask someone who does & it more often than not weedles it out of them!

Ardea profile image
Ardea in reply tonomoreheels

Thanks again - I will ask them to find someone that does know in future - that is a good idea of yours- wish I had now said that. Anyway, that is what will be said in the future! Thanks nomoreheels - nice name - sounds also like me - I used to like heels but they don't like me no more!

nomoreheels profile image
nomoreheels in reply toArdea

You can only try it. If they still won't ask them to write it down so you can ask your GP, that usually does the trick!

I think many of us here are same - it's been commented on before & again this afternoon too! Loved them, transferred my passion to handbags now lol!

beauty96 profile image
beauty96

They say they do not know what is being tested but they do as it has to be put on the outside of the bottle as to what tests they are doing. I sit there and say then "no blood test till you tell me", That does it.

Ardea profile image
Ardea

Yes, that seems right. I would rather know than second guess. If it is bad then hopefully they can help with meds if it is clear then that is brilliant. I am not going to panic but when it is your own body you do feel that you have the right to know1

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