Looking for PA Consultant

[oilbeetle]

Hi, I was diagnosed about thee months ago and I'm on B12 injections and feeling much better. However, diagnosis remains very uncleal. Very low B12, below limits of the test, but no antigens to intrinsic factor and negative on caeleac disease. Cant fault the GP but feels very limited what they will provide, essentially case closed 3-monthly b12.

I'm looking for reccomendation for a consultant in or near London that can tell me more than the GP on the causes and perhaps give some practical advice.

Also if anyone has a reputable source of methyl cobalamine or cyano cobalamine as I may want to top up, I'm very dubious about buying from Chinese websites

[Grygran]

I know some people have recommended Dr Klein of the Cambridge Iron Clinic but I have no personal experience. There are very few with the right knowledge. Most of us on this forum have resorted to treating ourselves after much desperate research. I started with Tracey Witty’s B12 Deficiency website. The PA Society is also very useful, and there is a lot of information on this forum. Look for Sleepybunny’s posts for a wealth of help. In the UK most of us buy our supplies from reputable German pharmacies, and they certainly supply cyanocbalamin, although most of us use Hydroxocobalamin.

[oilbeetle in reply to Grygran]

Thanks! I'm very new to this and its a steep learning curve and a bit frightening with the lack of resource and knowledge in the NHS. I had thought that daily dosed of 1mg (100ug) of B12 orally might help bridge the gap between injections but it does not seem to be working that way. If you can share a link to the German suppliers I would be very grateful. If they offer hydroxy cobalamine I would go for that, I am a chemist by training but not a biochemist and have not read into the differences in effect of huydoxy, cyano and methy forms of B12.

[Grygran in reply to oilbeetle]

This is what I use:

Ordered from Versandapo (I don’t know how to do a link but you will find it easily) in Germany. The website translates to English with a button at the top. I pay using PayPal because other methods have been more complicated in the past.

Vitamin B12-Depot-Injectopas 1500

Made by Pascoe, it is Hydroxocobalamin. I order 100 at a time as I SI every day.

I order syringes and needles from Medisave ( they ask if you are a business - I am an antique dealer so I answer “yes”. This question is new and sinister I think. ) I inject sub-cutaneously so use a small yellow needle (30gx1/2 inch).

Good luck!

[oilbeetle in reply to Grygran]

Thanks, I'm reading a lot and as I'm a chemist by training, but not a biochemist, its already feeling very complicated and that the NHS guidance may be way too simplified

[grumpyold]

I do have experience of the doctor Grygran is referring to.

I saw him 10 days ago . Not sure if I'm allowed to say more in public domain but I could private (chat) message you if you want more information.

[pinkpaddleboarder in reply to grumpyold]

Could you please message me regarding the Doctor as my daughter's doctor is not helping her, they thought she had MS,.luckily she hasn't now they're ignoring her.

[grumpyold in reply to pinkpaddleboarder]

Sorry for delay in sending you the private message. Only just seen you there. Done it now 👍🫂.

[Myoldcat]

Hi oilbeetle, many here have had the same difficulties as a clear diagnosis can be very elusive! And many of us have visited a private consultant in Cambridge who seems to be one of the only people to specialise in B12 deficiency. We can't mention names on the forum but I'll message you.

[oilbeetle in reply to Myoldcat]

Thanks, I'm very new to forum appreciate the need not to share medical advice on treatement, hopefully direct message works

[Myoldcat]

Message crossed with grumpyold!