Doctor is going to write to the haematologist...

[Vickymoonpixie]

Hi lovely people, wondered what you thought about this! Went to docs at around 8 weeks after b12 injection to ask (beg!)for earlier injection as I felt so awful. Was told my symptoms couldn't possibly be b12 as 'I'd only just had my injection'!! Explained symptoms, doc said they'd have to test levels, explained why was pointless (as I do each time!)doctor looked thoughtful. informed doctor (nicely!)treatment guidelines have changed, she has decided to write to a haematologist for advice... Is this good? I guess only if it's a knowledgeable haematologist!! Maybe my constant return appointments are finally hitting home?! Keeping fingers crossed. X

[clivealive Forum Support]

Hi Vickymoonpixie after nearly 40 of having regular B12 injections seven years ago I noticed a return of neurological symptoms in the run up to the next scheduled one so I went to my doctor and like Oliver I "asked for more" and he said exactly the same - "it can't be the P.A. because your'e having the injections".

So I joined the P.A. Society and on their then forum asked if I was the only person in the world who felt as I did before the next injection was due and was amazed at the response - NO - I was not alone.

I went back to my "one size fits all" doctor and eventually persuaded him to vary my prescription.

Your doctor is being cautious by writing to a haematologist for advice but as you say "only if it's a knowledgeable haematologist!!"

Please let us know how you get on.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Cherylclaire Forum Support]

I haven't had much joy from haematologists - in fact, have been told some very strange things by the two that I met: that B12 is highly addictive (which of course is nonsense) and that B12 is toxic and carcinogenic (where in fact it is used in very high doses as an anti-toxin !)........ I tried to get these "theories" (I'm trying to remain polite here) substantiated and obviously tried to argue my case for more frequent injections using a confirmed diagnosis of Functional B12 deficiency and the only research on this that I know of : Talbot and Taylor, but could not get either of them to produce one shred of evidence for their own opinions- because of course it does not exist ! They then wasted a lot of time trying to prove by blood tests that I did not need more B12 at all, and to find an alternative reason for my raised MMA levels. Still waiting for that ! Of course if they wait long enough, they can say that "MMA is generally higher in the elderly" - but they've already signed me off anyway, at the decrepit age of 60 !

I wish you a lot better luck, and truly think they only believe that B12 must be addictive because so many people keep asking for more !!!

[fionasloane in reply to Cherylclaire]

This is terrifying to hear! I can understand GPs being ignorant of these issues, but a haematologist?! Where about do you live?

[Cherylclaire Forum Support in reply to fionasloane]

Sadly Fiona the above mentioned are from a large major hospital - and one involved in B12 research. Can barely believe it myself.

[fionasloane in reply to Cherylclaire]

Good grief! It seems like flying over to mainland Europe is looking like a better option than trying to fight the misinformation here. So hard to keep fighting when you're not feeling well too. Hang in there!

[pvanderaa]

Keep a logbook of your symptoms and provide a list, especially the neurological ones, to the GP at each visit and ask for it to be included in your record. Holding this “evidence” in their hands somehow convinces them to support your request for more frequent injections. They will of course treat you like a total hypochondriac so you need to get the GP past this stage.

Keep calm and assertive and try not to beg or cry as you then become the victim of any power they feel they have over you.

The GP is your partner in working through the best dosage levels. Make the decision together. You need them to write the prescription.

[Nackapan]

Will be interested how you get on. It shouldn't have tone be like this. You haver to he well to get the treatment you need!! I'm hoping if neurologist csn confirm B12 needed my gp will change his mind. He has never seen people get worse after loafing doses and not pick up like me.

[LowB12]

I’m self injecting as GP said just in range and intrinsic factor -ve. PDF I filled out said I needed them, neurological symptoms, brain fog, anxiety, SOB (not asthma related etc). Not convinced GP read info & pdf I gave them but they asked a haematologist & they said not needed.

B12 is addictive...as you feel normal again on it!! For the first time in years I feel bright, alive, neurological symptoms reducing, less anxious (never was an anxious person), need less sleep / rest...who wouldn’t be addicted to feeling better?!