Hematologist or Neurologist

[WIZARD6787]

Any opinions or even a guess would be helpful. In the UK which is more likely to give a correct diagnoses of B12 deficiency ? A Hematologist or a Neurologist.

Am looking for a referral from a GP or going private.

[Scott-rock]

either would hopefully know.

I’m now seeing both, but for different conditions to what I originally got referred to the neurologist for.

I was originally sent to neurologist for my pins and needles etc and to check if the PA was the only cause. He then found other things and referred me to haematologist.

Haematologist last week confirmed my b12 regimen was perfect, and my doctor had done it right!

It was actually my cardiologist who diagnosed the PA. and said I would have other autoimmune issues.

[bookish]

Hi, it would be nice to think that either could help you, but I wouldn't bank on it. Neither of my (very good) neurologists were able to be sure about my B12 status and referred me for genetic testing - my point is, it rather depends on where the problem is, and how easy to spot. I haven't yet seen a haematologist, so can't comment. The fact that Scott-rock's PA was diagnosed by a cardiologist says a lot about the inadequacy of primary testing. Best of luck.

[sweetnessandlight]

Definitely neurologist in my experience. Dermatologists seem to know very little about it. At least neurons recognise the symptoms.

[sweetnessandlight in reply to sweetnessandlight]

Sorry that should read haematologists know very litgle.

[WIZARD6787 in reply to sweetnessandlight]

I was itching to point that out. 🙂

[Cherylclaire Forum Support]

It shouldn't be the case, but I think this would depend entirely on the individual. What I believe was more crucial to my treatment in consultations was my GP's detailed report to consultants. This was often commented on and praised for being thorough.

I was sent to haematology first (after GP had diagnosed functional B12 deficiency and was receiving frequent B12 injections). This was in 2017.

The first haematologist I saw took a lot of blood, asked many many questions, promising that I could ask anything I wanted to on the second appointment. She even photocopied my detailed list of symptoms for her files. She thought that my neurological problems were probably due to being an ex-smoker: lack of oxygen to the brain ! She then started telling me that B12 was highly addictive, toxic and carcinogenic..... oh, dear.

When I asked for research evidence for this, three times, the subject was changed.

Next appointment, I was passed on to a locum. I remember a lot of testing of MMA -which stubbornly remained raised. In the end, she decided that that was probably just "my normal" and then told my GP not to give me more than 1 B12 injection every 2 months.

(It was at this point that I started to self inject B12.)

The haematologist did however refer me to a neurologist. He really listened, did some tests visually. I was later sent by him for an MRI scan on brain, not spine as he thought no problem there, and then electric nerve tests on arms/hands, legs/feet (EMG). He told me that he did not know much about B12 deficiency -which surprised me- but was kind and gave me time. He thought in summary perhaps chronic "silent migraine" and suggested trialling riboflavin and co-enzyme Q10.

Neither MRI nor EMG showed any abnormalities. The nerve tests only show what main nerves are doing, and I didn't have the mobility problems that many here experience, so this was not altogether a surprise.

Being told that my brain was normal was both a huge relief and a surprise - I didn't feel normal at all !

[Hidden]

A neurologist can check your bloods (or tell your GP to do so), and they and do other tests to determine whatever; CT, MRI, nerve conduction tests.

[WIZARD6787 in reply to Hidden]

Thank you.

[Sleepybunny]

Hi,

I think probably a neurologist although I'll add that I saw several neurologists who missed the diagnosis despite typical deficiency symptoms.

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE guidance - when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

cks.nice.org.uk/topics/anae...

[BrianTheElder in reply to Sleepybunny]

Many thanks for that reference, Sleepbunny. It will help me a lot as I am just reaching the end of my initial dosing and am feeling worse again, so I have just had a new blood test and awaiting results.👍