Result or not for my 18year old.

[SarahFerguson]

Has anyone been referred to heamatology for further investigations?

[fbirder]

Yup. Biggest waste of my time ever.

He started off by stating "Well, you don't have pernicious anaemia."

When asked to explain a combination of: low B12, positive anti-GPC antibodies and autoimmune metaplastic gastric atrophy he reluctantly agreed that PA may be a possibility.

After that I decided I was just going to ignore everything he said.

[SarahFerguson in reply to fbirder]

Oh god - I was looking forward to seeing my son sorted out, but know doubting it!

[SarahFerguson in reply to fbirder]

I need to armed with everything then and tell him his job basically. We have a strong family history of PA, hope that helps his case!

[fbirder in reply to SarahFerguson]

I went armed with everything. When I went to show him th BMJ paper on B12 deficiency he waved it away and said "I already know everything about it".

He said that the fact that I felt better on weekly jabs was just placebo effect and that he would expect something like that from a woman, but not a man.

So, unless you're unlucky enough to be going to Worthing Hospital, I doubt you'll have to put up with anybody quite that arrogant and useless.

[SarahFerguson in reply to fbirder]

I'm in Southampton, probably end up at QA Portsmouth! What happened after you saw Hematologist?

[fbirder in reply to SarahFerguson]

I went back to my GP, told him I was ignoring the 'expert' and I would continue my fortnightly jabs (didn't tell him it was actually weekly). He agreed to refer me to a neurologist which turned out so much better.

[SarahFerguson in reply to fbirder]

Why so much better? I've just had conversation with Dr Chandy from B12d.org- it was very enlightening .

[fbirder in reply to SarahFerguson]

The neurologist listened to me, did the tests for my neuropathy that I thought I needed and referred my to an expert in London.

You probably don't want to know my opinion of Dr Chandy.

[SarahFerguson in reply to fbirder]

Yes I would like to know your opinion about Dr Chandy please please. I also going to buy Martin Hoopers book before I take son to haematologist

[fbirder in reply to SarahFerguson]

Buy two copies of Martyn's book. One for you and one for your GP. That's what I did and it has done the rounds of the whole practice. I hope that will result in less misunderstanding of the disease.

[Hidden]

I was referred to the Haemo who was looked for cell size problems then referred to Neuro who referred me to Pscho-ologist. I have been treating myself with B12/Vits trial and error which has improved my fatigue but my memory and brain still not improving. Still I feel much better with paddling my own canoe. Good luck

[Sleepybunny]

I have never seen a haematologist despite having multiple neurological problems when diagnosed with B12 deficiency years ago.

Go well prepared with B12 info and don't be shocked if haematologist lacks full understanding of B12 deficiency. Might be wise to try to condense info as much as possible as hopefully more chance they'll read it .

May be worth presenting information in letter form as this should then get filed with medical notes. I have written a request for letter to be filed with my medical notes at top of letters before.

One of things I take with me to B12 appts is flowchart from BSH Cobalamin guidelines.

stichtingb12tekort.nl/weten...

I have also taken a copy of Martyn Hooper's book to leave with doctors

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency".

Are you going with your son to appt? Less chance of arrogance if a witness is present.

May be worth speaking to PAS before appt.

pernicious-anaemia-society....

PAS tel no [phone]

I found fbirder 's summary of mainly UK B12 document useful to read. Link to summary in third pinned post (last link in list).

Might also be worth your son requesting (possibly in a letter) when he gets to appt that he is sent copies of any letters haematologist writes to GP.

Link about letters from medics to Gps about patients with b12 deficiency.

b12deficiency.info/letters/

[SarahFerguson]

Update on my son: his if test came back satisfactory : however I have asked that haematology see him- they have requested a Halo (active b12) blood test. What are your thoughts on this?