After spending YEARS trying to get more blood tests for my chronic pain and chronic fatigue, I finally got my GP to send me for autoimmune tests!
I have had chronic fatigue for 30 years roughly and chronic pain for around 12 roughly, both which got dramatically much more severe in the past few years, and I never had an autoimmune test!
I only ever had the basic blood tests done such as a full blood count etc. That is it! They never bothered to do more and I kept asking for autoimmune tests but they wouldn’t.
I went to the nurse at the doctors and she spent 40 minutes trying to get a vein as they can’t find them easy and blood doesn’t come out well and I always get unwell and often pass out.
After two injections and no blood coming out, plus me sweating, feeling sick and almost passing out, I asked her to try again. I said they always get blood eventually. She said “the hospital do it better as that is all they do”. I am pretty sure nurses don’t just take bloods all day there but I wasn’t going to say that.
“They can take blood from the hand, we can’t”, I said “they don’t ever get blood from my hands and I pass out instantly.” She didn’t reply.
She kept complaining and trying to blame me. “Your skin is cold that must be why.” I replied “no, my skin is always cold. I am sweating profusely right now and it is still cold.”
She said “oh” and that was that.
Eventually she got blood at the third site.
She had obviously ran over time so was moody now. I had told them I pass out and can take a while prior.
“Don’t come back here to get your bloods done, go to the hospital” she said.
I was in a right state and she was still being rude.
“I won’t” I said.
Anyway the bloods came back after over three long weeks. Positive for four things
Parietal cell autoantibody level Positive (Due to Mitochondrial Ab)
Mitochondrial antibody screening test Positive at 1/100
Anti SCL-70 AB Blot Positive
ANA Result Positive
This can be:
Primary Biliary Cholangitis (PBC) (Mitochondrial antibody screening test)
Scleroderma (Anti SCL-70 AB Blot Positive)
Pernicious anaemia (Parietal cell autoantibody level Positive)
The first one can be progressive and shorten life, the second if it affects your organs also can shorten life and the third, well you need regular B12 injections which when I am disabled and can’t afford a car so can’t go out all the time to get jabs, PLUS I often pass out from them, is horrific.
You need the injections every other day for 2 weeks or until your symptoms have started improving!
I can barely move, can’t afford a car and most definitely not a taxi, don’t have family alive to help, so not sure how I could get there every day for 2 weeks! That is almost impossible unless it was still during the pandemic and maybe then I could.
I have been referred to rheumatology for the Anti SCL-70 AB Blot Positive blood test, having more blood tests to check my liver function and B12 for the other two positive tests.
If the liver comes back OK, then I may get PBC in the future but they will assume I don’t have it now. In other countries they scan your liver to check it too but they don’t do that on the NHS….
They haven’t referred me to immunology either. Other countries do so many other tests when the mitochondrial antibody screening test is positive, I just get a liver function test blood test.
If the B12 comes back OK then they will assume I don’t have the pernicious anaemia.
The first two can be signs of something else too so not sure why they wouldn’t do more tests, but will see. I will keep researching as it is only when I ask for things do I get anywhere. They don’t do them otherwise.
I tried making the rheumatology appointment, but there wasn’t any and with it being the NHS, it could be months or years at a worst case (had multiple year waits before).
With the pandemic it is worse as lots of medical treatments and facilities aren’t even available.
I also self diagnosed all my conditions myself, one being the rare hidradenitis suppurativa as well! I don’t just browse the internet and diagnose myself with everything, I read all the medical information which is why I knew what blood tests to ask for. I seem to have to know more than the GP’s to get anywhere as they don’t do a thing. This one is much better but he will only do things if I push for them whereas others wouldn’t do anything no matter what.
Many also wrongly diagnosed me and even when I was getting a hole in my nose (perforated septum), one GP looked at it and said it wasn’t that. I was adamant it was. Went to another GP and oh look it was what I said.
I haven’t had a good experience in the UK with NHS doctors. I have many bad stories but that’s for another day!
I will post updates when I hear back after my next blood test.