Hello all.
I'm being (unexpectedly) referred to a haematologist by my Gp after a phone appointment earlier today.
Can anyone advise what I can expect? What they're looking for above and beyond usual blood tests? Any experiences of your own?
Help / advice appreciated
And why are you referred? Did he say? B12 low I assume?
The haematologist will do more bloodtests probably, check some things (like bloodpressure etc) ask you about your symptoms and then depending on the results either order more tests, refer to another specialist or treat. All depends on why your GP referred you.
Sorry yes, a b12 deficiency was identified for me in January. The purpose of the phone call was to tell them I needed it more often than 3 months (which they agreed to, result!). But she also said she'd refer me too.
My GP didn't do any further blood tests after id'ing the problem, although I had a private consultation which seemed to rule out PA, celiac disease, crohns.
I guess the nhs (unaware I had a private consultation) are looking for the above, maybe. I might have answered my own question.
Roll on Friday when I get another injection.
Your private test that 'ruled out' PA was probably a test for anti-Intrinsic Factor (IF) antibodies. This is a great test if it's positive, because it almost certainly means you have PA. However, a negative result doesn't rule out anything - because 50% of people with PA test negative.
With a bit of luck the haematologist will order the same test - so you'll have another chance.
Good that your GP agreed to more frequent jabs!
from my experience, they ask the full history of your symptoms etc
write it all down before you go so you dont forget anything
from that, they put me on b12 injections every 2 months for life and folic acid for life as there were neuro symptoms
however im injecting myself now because i find 3 times a week makes me normal which they will never do.
i don't even bother with the injections from the doctor anymore, its a waste of my time and theirs
Self injecting is the next step for me. They're going to show me how to do it and I assume arrange for me to procure b12 through the nhs.
I know you can get it via the www from German pharmacies. However I'm very apprehensive about ordering something from the net in a language I don't speak!!!!!
Is it the right stuff?
Does it have the equivalent of a British kitemark quality standard?
Basically I don't want to inject something I think is right only to start foaming at the mouth shortly before kicking the bucket.
Now that would be a complete nuisance.
I thought your GP was going to give you more? Maybe the haematologist can help as well?
The b12 from Germany: yes, it's the same and yes, very good and reliable. A lot (and I mean a lót) of people in Holland use them. There are 3 (or more) good ones:
* B12 Depot Rotexmedica 1000µg hydroxocobalamine Amp
* LOPHAKOMP B 12 Depot 1000 µg Inj.-Lsg. hydroxocobalamine
* VITAMIN B12-DEPOT-Injektopas® 1500 µg Pascoe
and then there's methyl and adenosyl from München.
The online pharmacies speak (write) english so just email them for info if you need/want.
Thanks for the advice.
My Gp has agreed to a frequency of every 2 months based on nice guidelines. But it's more like 7 weeks for me. I'm assuming if I start getting them every 7 weeks someone will notice and tell me off for being a b12 junkie. Maybe they won't supply me with it through the nhs.
A lot if this is based on my assumption.
You can always just try and go every 7 weeks til you get noticed 
Or add (good) supplements in the last couple of weeks (or longer) Might work well, you wouldn't be the first.
Oh they'll notice!! They're very good at that!
I got put on vitamin D by the private doc, it's hard to gauge if that had much of an effect. I've tried the spray and eat all bran and sauerkraut.
Onwards I go, injecting myself (with the right stuff) will be the win for me. I need to not be a waste of space in my private and work life 1 week of 8!!!
for me the stuff i got from abroad is better than what they give you in the UK.
I get neurobion forte currently from greece, when people go on holiday there. its cyanacobalamin and b1 b6
its all scary in the uk because its in an inject-able form, we are programmed in the uk that anything inject-able must be bad and must come from a doctor.
They just handle things differently on the continent, infact when i was given a uk supplied bottle of hydroxycobalamin it was "made in Germany".
I wouldnt buy the bootleg stuff from china but the EU is fine.
neurobion is not recommended (in general) because it has high dose B6 as well, which could give neuro problems if it is taken often, and benzylalcohol as preservative, which some people are allergic to. But some people do fine on it, so then no problem.
It might be helpful to read current UK documents/articles about B12 as some medics are not as well informed about b12 as they could be.
BCSH Cobalamin and Folate Guidelines
Martyn hooper's latest book"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
UK B12 websites
pernicious-anaemia-society....
I certainly will.
A cursory Google search doesn't always return the salient info, thanks for helping.
It's been 8 months for me and I feel I'm only scratching the surface.
Finally the Doctors and Haematologist are listening
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Doctor is going to write to the haematologist...
