What type of consultant is able to help with P.A.

[Chickens44]

if you do suspect you have pernicious Anaemia, and the GP is willing to accept the possibility, what is the best type of consultant to see. Gastroenterologist or immunologist? Or other. I am willing to pay private if that is what it takes to get some answers.

[Nackapan]

I was referred to a neurologist .Others gastroenterologist

Really depends on your symptoms

[Orchard33]

I self-referred to a haematologist through my surgery.

[Jillymo]

Hi and welcome to the site,

This is a dificult question to answer.

My Dr refered me to a neurologist who knew nothing of a low B12 or it's symptoms ! I am seen in London by a Haematologist so I approached her to find she knew nothing about the condition or how to treat ! I felt like I were treading water and getting nowhere.

I used my own incentive and insisted I be seen by a gastrologist. I have a hiatus hernia and gastritis so it seemed a good option which has been benificial in my case.

My suggestions is look at what could be causing your deficiency ie do you have gut or bowel problems for example if so a gastrologist. I searched the net for a consultant who had interest in B12 deficiency - they are very few and far between but you can look at their specialised interests. If intending to go private you could enquire about the consultants knowledge of treating before booking them. Good Luck

[Twaddletop]

I think you’d need to see an Endocrinologist, Chickens44.

[Wwwdot]

Hi Chickens44

Sorry to hear you are joining our illustrious group , but welcome!

I was diagnosed in Oct 2022, with a B12 level of 106 ng/l. I was referred to a haematologist who said there was nothing wrong with my bloods. I was then referred to a neurologist who said nothing wrong with me. I am still waiting to see the gastroenterologist having been in the waiting list for 18 months.

In December 2022 I went to see a private B12 specialist in Cambridge and I have been following his advice since and making great progress.

You may be lucky and find a NHS consultant who will listen but it’s frustrating and concerning and it gave my GP the ammunition to do nothing.

Best of luck.

🤗🤗🤗

[Chickens44 in reply to Wwwdot]

I am quite happy to pay privately, just need the referral really. And my GPs acknowledgement that there is an underlying cause for my symptoms. Fingers crossed. 🤞

[Wwwdot in reply to Chickens44]

Hi

You dont need a referral from your GP to see a B12 specialist privately and unlikely to get one from GP as no such consultant exists in NHS as far as I am aware. But I totally get attempting to get GPs buy-in - hope for the best but expect the worst. GPs who actively treat and understand PA or B12 deficiency are like hen’s teeth!

🤗🤗🤗

[Windyway in reply to Wwwdot]

Hi is it dr Kline you seen ? I was thinking of going to see him as suggested by someone else were you happy with him ?

[Wwwdot in reply to Windyway]

I sent you a private message.

[PaintLadie]

I had to see a gastroenterologist to get proper care for PA

[Windyway in reply to PaintLadie]

Hi I went to see a gastroenterologist he was the one that told me I had pernious anemia but offered no advice or help !!!

What advice was you offered ??

Windyway

[PaintLadie in reply to Windyway]

Mine offered me no advice after I had my procedure. I think they assume your GP will take over. I had to reschedule with the physicians assistant at my gastroenterology clinic to explain my plight because my GP was becoming a major hindrance to treatment and was costing a ton of money. I explained to her that my doctors are still making me prove I have PA via blood test and were holding b12 prescriptions hostage unless I saw their specialists and took more blood tests. Which in the past I had done just to have them say I do not have PA. I have had neurological damage because of this and reliving the same scenario with other GPs. I explained that my GP did not understand PA and they keep trying to take me off of my b12 because my blood levels are high and they send me to a hematologist who doesn't want to see me and who kept saying I do not have PA because my bloods where normal and that Im overdosing on B12. I was GP hopping trying to find one who would properly treat me to no avail.

The gastros physician assistant could literally see the damage to my gut so she made it clear in all my documents to the insurance company that I had a diagnoses of PA. She also went the extra mile to show them that it is normal for someone with PA to take daily injections so they would cover my B12. Unfortunately, in the US, Hydroxocobalamin has been on backorder since November of 2023, so I can't fill my prescription anyway, but I was more worried about having it on record incase I ever end up in the hospital incapacitated for some reason. I would need that b12 to be able to heal and I would want them to be able to see my diagnoses and not deny me it. I hope eventually I can get my insurance to pay for my hydroxocobalamin, when it is back in stock, as insurance here is very pricy and not a choice.

When you do reschedule you need to go prepared with your questions.

[MorningMist]

My gp tried to refer me to a haematologist who refused to see me because my level was 254, unfortunately after taking sublinguals for a while. No one thought to ask what had brought me to the doctor in the first place.