Who should I request a referral to?

[EA_24]

Hi everyone,

I'm not yet diagnosed, and looking for advice in getting a diagnosis.

Last month I had a positive c-anca test (but nothing else of concern in my blood tests). I suffer from recurrent eye inflammation (uveitis and episcleritis), joint pain, fatigue, some neuropathy, headaches, scalp sensitivity, and raynauds. After a lot of research, and hearing about other people's experiences on this forum (thank you everyone who reached out after my last post), I think my symptoms could definitely be anca vasculitis, and I would like to get this confirmed or ruled out ASAP before it develops into anything more serious.

My ophthalmologist is the one who ordered the anca test, and I have an appointment with him this Thursday where I will bring up the test result. But, I'm not sure he will know anything about vasculitis (the test was done as part of a full autoimmune panel, and a different opthalmologist was the one who suggested vasculitis). I've also tried to discuss it with my GP, but she had no idea what the clinical significance of anca was, and said I should wait until my next opthalmology appointment.

I want to ask my opthalmologist for a referral to a vasculitis specialist, but I don't really know how this works! Who should I be referred to? Do I pick a specific person and ask to be referred to them, or do I ask for a general rheumatology referral and hope for the best? It looks like there's a specialist who works at my local hospital, but she's a nephrologist and as far as I'm aware my kidneys are okay (but they haven't been checked), so I don't think a referral to her makes sense?

I'm based in Plymouth, if anyone has experience of being diagnosed/treated around here. I want to be as informed as possible before my appointment next week.

Thanks

[PMRpro]

" I've also tried to discuss it with my GP, but she had no idea what the clinical significance of anca was"

She WHAT???? Can't she use google???? And she has access to far wider medical literature searches than I do ... To be fair - there are healthy people with a postive ANCA, sick people with a negative one and there are 2 different sorts. She may not know what it MEANS, but she should know you need a referral - and not just ignore it. It means you need investigations by a specialist.

Your GP should be referring you in the first instance to rheumatology - with all the results available. They then triage it and should give you to the most appropriate doctor in their department. Doctors who do nephrology usually have quite a decent background in microvasculitis - small blood vessel involvement which is what goes on in kidney vasculitis but it can affect other parts of the body.

unckidneycenter.org/kidneyh....

[EA_24 in reply to PMRpro]

Her exact words from my last appointment notes! I did also find it a bit weird that my GP dismissed it so quickly. Thank you for the advice, I’ll first ask if my ophthalmologist can make the referral and if not I’ll try my GP again. Vasculitis or not, I don’t want to ignore this

[PMRpro in reply to EA_24]

There must be more than one GP in the practice - interview a few others! If you have symptoms that SHE can't account for and treat successfuly then SHE is the gateway to a doctor who knows more than her. She is a General Practitioner - you need a specialist. If SHE won't help - complain to the Practice Manager in the first instance. There is a procedure:

ombudsman.org.uk/sites/defa...

You are in England?

england.nhs.uk/contact-us/f...

I should add - those links come up for me after just typing 2 letters, that's how often I have looked for them!!!!!

[scscsc in reply to EA_24]

I wonder which surgery you're at? I'm in Plymouth also, I asked my GP about the meaning of positive C-ANCA because it was tested twice by the asthma clinic. Twice positive and twice been told the result was normal. GP said, oh that sounds like something specialist, ask the asthma doctor when you see them. Then asked about my stress levels!I hope you get some answers. It's tiring trying to navigate the system.

[Main1234]

hi

You may find a call to the vasculitis help line useful re consultant.

I would definitely put a complaint into your surgery and ask for another GP. What an appalling service.

Good luck

[Mooka]

I’m treated in a specialist vasculitis centre and a lot of the doctors are nephrologists. If you have access to a specialist unit I’d definitely go for that. If it turns out you don’t have vasculitis they can refer you on. Good luck it’s often a long journey.

[zoe69 Administrator Volunteer Vasculitis UK]

Do not worry, your ophthalmologist will collaborate with rheumatology in Derriford. Dr Jon King is the lead rheumatologist and he is very good.I live in Plymouth too. Feel free to message for a chat. Or call the Vasculitis UK helpline 0300 365 0075

[EA_24 in reply to zoe69]

Thank you, this is reassuring! I’m glad you’ve had a good experience at derriford - makes me feel a bit better about the whole thing

[zoe69 Administrator Volunteer Vasculitis UK in reply to EA_24]

I have messaged you some information

[orthotist]

I have gpa vasculitis and your symptoms are nearly identical.your kidneys may well be involved ,blood in urine is easy to test even for gp .rheumatology generally co ordinate tests etc.keep getting tests try to get early treatment,if prednisalone usually.good luck

[EA_24 in reply to orthotist]

Thank you, it’s quite validating to know other people have the same symptoms. I’ll be insistent about a kidney test at my next appointment