Autoimmune blood test

[GrandmaDylan]

When I first started on this journey in February this year it was with my yearly diabetes check. It came back showing various abnormalities including anaemia. This then meant that I'd go to see a haematologist in june this year. A wait of around 12 weeks. They were thinking bowel cancer and put me on the 2 week cancer pathway. I had a liver scan then an endoscopy and gastroscopy a couple of days later. The liver scan showed an enlarged cirrhotic liver and an enlarged spleen with varices. During this time I continued to have blood tests. Twice my gp requested an autoimmune test which the lab declined. When I saw my consultant (privately as it was an 18 week wait on the nhs) he said that I needed an autoimmune blood test (an ANCA test) My gp took the blood tests himself last Thursday and said that he'd tell the lab that it was necessary. Surprise, surprise. They declined it again. Apparently this test is usually done for vascular disease and the consultant at the lab says that he won't allow it. My gp is going to ring my consultants Secretary tomorrow to ask if he will intervene. I am going to do the same. The thinking behind the autoimmune possibility is that I've previously had graves disease which is also autoimmune.

Has anyone else had problems with this tests? Deb

[Porphyriamaniac]

I haven't bridesmum but id certainly be pushing for it too as it sound like it's warranted, it beats me how they can even refuse??!! Don't give up! All the best to you. Xxx

[MisterX]

"Has anyone else had problems with this tests?"

I'd be shocked if they had. The situation sounds insane. It's a routine part of the diagnosing of Autoimmune Hepatitis. On the assumption that everyone hasn't completely taken leave of their senses I presume that somewhere along the line there has been a miscommunication.

I suggest you make a formal complaint and escalate the issue if it's not resolved quickly.

At the very least whoever the "consultant" at the lab is - he needs to answer for his actions - it's not his job to decide how people are diagnosed.

It all sounds rather odd.

The BSG Guidelines are here if you need a reference - there is a section on diagnosis which explains why the antibodies are an important marker.

[Hidden]

It does depend what auto-immune condition they are looking for. I took this from the website "labtestsonline"

The ANCA test is:- To help detect, aid in the diagnosis of, and sometimes monitor certain forms of the autoimmune disorder systemic vasculitis (inflammation of blood vessels)

To help distinguish between Crohn disease (CD) and ulcerative colitis (UC), the two most common types of inflammatory bowel disease (IBD); as an adjunct to other IBD testing.

If they are looking for auto-immune hepatitis, then a different blood test would be needed, which would look for different autoantibodies.

Not sure if this helps at all.

[MisterX in reply to Hidden]

Good spot! I missed the C and was reading ANA.

The main tests are for ANA and ASMA.

And more rarely .... anti-liver-kidney microsome-1 antibodies (ALKM-1) and anti-liver cytosol antibody-1 (ALC-1).

There may have been a mix up. Worth double checking they’re asking for the correct test. Still should have been sorted by them though.

[GrandmaDylan]

Thanks for your replies. I rang the consultants Secretary to ask her to speak to him about him intervening in this matter. I also googled it and it is as you say used for diagnosing different autoimmune conditions. I think this has been going on long enough being passed from pillar to post. I assume that they don't want to do it due to cost but the cost to my mental and physical health is huge. The good news though is that I've finally got the date for my ct scan. Deb