Private Immunologist - how to find one? Worrying blood test results.

[Immunetypegoblin]

Namechanged for this - posting in chat for traffic.

I have an underactive thyroid and family history of autoimmune diseases/early menopause, so when I got hot flushing cheeks I assumed it was perimenopause. I got blood tests and turns out my WBCs are rather low, both the platelets and the neutrophils (plus other moieties). As an aside, I also seem to have developed Raynaud's Phenomenon (see hideous hand pic). I've always had bad circulation but this is something else!

My uncle is a GP and took a look at my results; his advice was do not pass go but immediately find an immunologist. He seems worried. So I am slightly more worried now

Any ideas on how to find such a person please?

Who ordered the tests for you?

How did they explain the results, and what if anything did they say about need for a referral?

In terms of finding one yourself, then I expect any the major private providers will have immunologists. Did your uncle explain why immunologist, rather than haematologist?

My partner had to find a private endo, so not sure if same would work, but I found our local private hospitals (Spire was closest, also looked at Bupa and HCA) and looked on their website for names, then rang them to check cost and availability. We went down this route as it was clear it would take weeks through the NHS and the GP really wasn’t helpful as they didn’t really understand the condition.

Good look @Immunetypegoblin - hope you are ok.

GP ordered the tests thinking perimenopause, due to facial flushes. Flagged the WBCs but said to retest as planned in 4 weeks. Nothing on referral as yet. My uncle said it looked autoimmune but I can't ask him as we have no language in common - my dad relayed this info!

Shamoo - that is interesting, thanks. I was browsing last night but all private immunologists seem to lean towards allergy rather than whatever I've got...

Try a Haematologist. Blood is their speciality, they may be able to get a more definitive analysis of your bloods and then help refer you on.

Just to reassure you, if GP is recommending ra-testing in 4 weeks, this means your results are borderline and may well resolve spontaneously

If there were a major problem with a test result, then there would be an immediate referral - probably to haematology in the first instance. As you uncle suggests an immunologist, then it is unlikely his concern is a malignancy. (I hope that reduces worries a bit)

Thanks iVampire. However I think they are just retesting in 4 weeks in line with the original plan (ie assessing FSH/LH levels, which are unreliable and need two sets of results).

For background, I first got told my platelets were worryingly low in 2018. Worried GP calls me, says come in, I come in and they say 'we'll keep an eye on them'. Years (literally) pass. Doctors start saying things like 'your platelets are low but that is normal for you'. And now my WBCs are going down as well. I'm starting to wonder how low everything has to get before someone actually investigates further

I may seek out a haematologist instead, that is a good shout!

You might be better finding a rheumatologist - they deal with autoimmune diseases. Ask your GP for a referral and ask how long you’d expect to wait via the nhs.

Sounds like a plan, and thanks for the rheumatology recommendation - I hadn't realised that was a relevant field! I think I'll wait for the next set of results and then ask re referral times, as you say. I am not going to get fobbed off again though, I am determined - if the NHS can't/won't investigate further then I'll seek out another option.

Agree- a rheumatologist is probably where to start

Dosclaimer- not a medic but those hands look like classic Raynaud’s syndrome.

Apologies op, I missed the part in your post where you’d already identified that.

Yes you need a rheumatologist. They deal with autoimmune diseases and would be the correct person to see. A flushed red face can sometimes be a sign of lupus, a very treatable problem nowadays

Thanks tiredteacher - my aunt has lupus so I did wonder about that possibility! I had to ask the GP to add ANA to the list of things to test for (I know it's not definitive but is a helpful indicator).

I will scour the internet for rheumatologists tonight....

I have low WBC and neutrophils plus also get that on my hands and feet
Was sent to haematology and diagnosed with autoimmune neutropenia

Check for any private hospitals in your area. That'll be your best bet. You might need to ask your gp for a private referral.