What type of consultant/consultant East Anglia?

[Uluru72]

Hi

I'm looking to try to get to the bottom of my problem(s). I had typical low b12 symptoms for many years, got very sick. I started b12 SI in mid Feb and had a really good response after about 10 days, best I've been for years. Last 2-3 weeks have seen a lot of the symptoms return, along with insatiable hunger. My serum b12 has historically been okay and I was given thyroid function tests about 3 years ago. My GP has arranged a IF antibody test for next week, though I know a negative result there isn't conclusive.

I have tried to make a private appointment to see a consultant haematologist but he wasn't interested on the basis of my normal 'b12 levels'. I really can't travel far to find another one - is it worth seeing a neurologist or gastro specialist? I want someone who will consider doing MMA and homocysteine tests, I want to bottom this out. Has anyone had a good experience with a consultant in East Anglia? I did see a neurologist over the last 3 years but he gave me a variety of diagnoses ending up with ME/CFS which I'm pretty sure is not right. He ruled out b12 being a problem on the basis of the same serum result which this latest haematologist refused to see me.

[Nackapan]

ME_cf Fibromyalgia

MS

All have been given too many times to PA / b12 deficiency patients.

It's hit and miss with who you see.

Lack of training across the board.

It's finding an interested specialist with an open mind.

It depends on your symptoms to where a referral can be made.

There are not any B12 specialists

I was initially referred to a neurologist and had brain MRis and a brain CT scan.

Then refused a referral to ENT the after 3 yesrs got a telephone appt.

Did her an ear pressure test.

Saw a neuro Opthalmologist.

All have conflicting opinions.

I'm glad you've responded well to B12 injections .

Keep going to rule anything else out .

To date nothing else found for me.

Just the first ever serum B12 test was 106 (200- 900)

Got loading b12 injections then everything difficult.

Hope yo get to the cause.

Get every test you can.

[deniseinmilden]

I'm in Suffolk and tried for years, without success, to find anyone good. Or, more particularly, anyone who didn't just waste my time and cause me additional hassle! I gave up and have been successfully doing daily SI for 8 years.

The only positive result I have had has been following asking for a referral to Dr Woodward's gastroenterology clinic at Addenbrookes: there they diagnosed chronic pancreatitis, EPI (exocrine pancreatic insufficiency) and SIBO (Small Intestinal Bacterial Overgrowth).

They weren't too bothered about my B12d but did run a test which confirmed PA. They didn't want me to stop my daily jabs and just ran tests to make sure I was getting enough of everything else. I had to increase my potassium (which I was already taking at a rate which would normally be toxic) and that helped me. I've had deficiency issues with iron, magnesium, calcium, vit D and other B vitamins too.

[Dilly_blue]

I went to the (private) Cambridge Iron Clinic at the Nuffield Hospital, Cambridge in December. The doctor there is very knowledgeable about PA / B12D, as well as iron anaemia. If you Google the clinic, you can send a contact message (and explain the issues, and what you are looking for) - the doctor is usually very quick at responding to this, and will call you back to discuss whether he can help. If you go ahead with an appointment, he will write to your GP, potentially with a diagnosis, and further recommendations. I know he also works very closely with a gastroenterologist (in Cambridge, presumably). I know of others on this forum who have also been to the Cambridge Iron Clinic. I hope I have not broken the forum rules by mentioning this clinic, many apologies to forum admin if so.

[Uluru72 in reply to Dilly_blue]

I received a message recommending the same place - I had an iron infusion there 3 years ago when serum ferritin was on the floor. Contact made, many thanks.

[Sea-blue]

Uluru you may want to postpone your IF antibody test for two weeks. You need to be off all B12 supplementation for two weeks prior otherwise you could have a false positive result. Although with the way the medical peeps treat us that might not be such a bad thing. A negative, as you already know , doesn’t rule out PA. I had two IF blood test two years apart . Second one diagnosed with PA. Hope you get some answers. Good luck