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Autoimmune disease

It's a long shot, but is anyone here a rheumatologist?

35 replies

BlackInk · 28/03/2021 19:02

It's a long shot, but is anyone here a rheumatologist?

I feel I have a strong case for being diagnosed with an autoimmune disease (possibly lupus) but have been totally dismissed by GP and after one appointment with a rheumatologist.

I'm not asking for a free consultation, or anything. Would just like to know whether I'm barking up the wrong tree. I feel totally lost as to where to go from here, but can't go on as I am.

Thank you!

OP posts:
BlackInk · 06/04/2021 14:14

Thanks folks. I really appreciate you all taking the time to reply.

I'm being treated for non-dietary B12 deficiency with 3-monthly injections. I had to fight for these as the follow-up testing for pernicious anaemia was negative, but my levels continued to fall despite taking high-strength oral B12 supplements.
My Vit D levels were good when tested.
I take iron supplements but my ferritin sits right at the bottom of normal range, dipping below every now and then.
I've seen an optician and no concerns raised there.
I have 2 children and am post-menopausal – but had a hard time getting/staying pregnant.
I've had an endoscopy and coeliac tests but no cause identified for deficiencies.
I think my GPs think they've investigated causes and not found anything so given up.

My morning cortisol has been just below normal range every time it's been tested but SST for Addison's was normal so no further action there.

Thank you @TheVanguardSix that gives me some hope that I'm not going mad! I'm thinking that changing GP practice is the only way to go. My GP would say there's no point in referring me to rheumatology as I saw one privately and they weren't concerned.

OP posts:
TaraR2020 · 06/04/2021 14:22

In which case you're definitely out of other options and it's absolutely time to make a fuss. Wishing you the best of luck and hope you make progress quickly!

Shezlon · 06/04/2021 14:48

BlackInk, I have pernicious anaemia and have also had the battle about injections. 3 monthly are hopelessly inadequate for most people. Regardless of anything else going on, you will need to get on top of that. I inject myself now, and it took a couple of years of daily/every other day injections to feel nearing normal again. I can now get on ok with weekly injections. I'd urge you to join the b12 deficiency/pernicious anaemia support group on Facebook or the pernicious anaemia society, there's lots of information about it and people's experiences of recovery and treatment. It can cause so many symptoms, it's really important to tackle it. Also, in the absence of a dietary reason or other explicable reason for the b12 deficiency (coeliac, bowel removal, vegan etc), you should be diagnosed with pernicious anaemia regardless of the presence or not of anti-intrinsic factor antibodies.

Nat6999 · 24/04/2021 00:23

If you are having B12 injections, you need to be taking cofactors, folic acid, magnesium, Vitamin B complex with no more than 10mg vitamin B6 (take 4 months then a month off for B complex) & eat a high potassium diet. You need the cofactors to absorb the B12, 3 monthly injections isn't enough, it is the bare minimum you should be having, I inject every other day & also take 4000 units of vitamin D along with my cofactors. I'm just being assessed for Lupus as well as my neurological symptoms that were diagnosed as B12 deficiency aren't improving.

HelloDaisy · 24/04/2021 00:32

You need to demand, nicely, that they refer you to a rheumatologist as it is your right to be referred to a specialist. And if that one can’t help then say you need another referral. Dh had to do that as he was going from pillar to post trying to find out what was going on in his body as kept getting fobbed off. Eventually we found an amazing consultant who dx correctly and dh is doing well now he is on the right medication.

As an aside though, I have chronically low ferritin and have recently been told that it is often connected to gluten intolerance as well as allergy so that may be worth looking at....

lljkk · 24/04/2021 07:43

How old are you & how old are your children?

mumonthehill · 23/06/2021 20:39

Can I hop on this for some advice? I have suspected scleroderma via gp with positive blood results. However gp is rubbish and been told today a 12 month wait for a rheumatology appointment, they also want me to have an ultrasound on my hands. I do have skin rash. I am thinking of going private for scan and bloods but what bloods do I need to make sure they do?

Lupinhere37 · 25/06/2021 00:52

@mumonthehill not sure what area you’re in but pick the right Rheumatologist, who has a special interest in scleroderma. Not all do. Then let she/he decide what diagnostics are needed; honestly don’t worry about that yourself.
Look at your local private hospitals and their rheumatologists, then dive into their areas of interest until you find someone.
Also check at booking that they do the ultrasound of hands. Not all rheumatologists are US trained and so you need to make sure they have someone they work with.

mumonthehill · 25/06/2021 06:25

@Lupinhere37 thank you! I will start looking into it.

SinkGirl · 25/06/2021 07:22

For some reason my phone isn’t working well but I would look up the NICE guidelines for lupus assessment including when to refer and make sure those are being followed.

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