Hello,
Does anyone know a PA sympathetic G.P. in South East London? Or London who doesn’t have a tight catchment area? Mine thinks I am a total nutter despite B12 giving me my legs back. I’m having to sort all this out myself at the moment and really want some medical advice.
Admin Edit: please note that naming GPs in a forum post is against HU and community guidelines.
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Dottyspotspot, please note that naming an individual GP in response to a post is contrary to HU and community guidelines though members of the forum can do this in personal messaging/using the chat function.
I would suggest that you contact the PAS directly - though you may need to join - and ask them if they can help.
pernicious-anaemia-society....
pernicious-anaemia-society....
Sorry, I didn’t realise. I was just looking for help. I have been in touch with the society but haven’t had any luck.
sorry to hear that. Possible that someone may reply by private message.
The problem is that even if you can find an NHS GP who is more understanding of P.A. and B12 deficiency , he/she is not allowed to give you more than one injection every 2 months .If you feel you need more, you can pay for a nurse to come to your home to give you an injection of Hydroxocobalamin B12 ( b12horizon.co.uk. ) The cost is £89.15 . Or you can self inject like many of us are forced to do . If you buy in bulk— 100 of everything — an injection costs just over £1.00 . The Hydroxocobalamin ampoules can be obtained from excellent German online pharmacies , and needles syringes etc. can be obtained in U.K. . There is a device called an auto-injector which is a great help if you dread self-injection. Quite expensive at about €90.00 obtainable from Denmark . ( auto-injector at Union Medico ) Hope that this helps you . Best wishes .
Hi thanks for your help. I have been self injecting since June and that’s how i got my legs back and know it works! There was a lab error and so I don’t have a diagnosis and i need one. I’m just looking for someone who can officially diagnose me so I’m not going it all entirely alone. It’s terrifying especially as my health and mobility was so badly effected.
I had to go to a private GP at a Nuffield Hospital to get my diagnosis , as I was sent on my way by my NHS GP , when I had B12 serum reading of 150 , awful symptoms -confusion , anxiety , dizziness , exhaustion and totally numb feet ( diagnosis for feet was “ideopathic” ) So, about £100.00 for an appointment with private GP and £70 for blood test , which showed positive for Intrinsic Factor Antibodies . (Often shows negative even if you have P.A.) Took result to my GP, and received B12 treatment .Loading doses and an injection every three months , which is insufficient to keep symptoms at bay. Refused extra injections , so now self-inject weekly .
I hope someone comes up with really useful suggestions for you .
Amazing!! Thank you for giving me hope. I will see if I can book an appointment!! Xx
Hi,
I would warn you that going private is no guarantee of finding a GP who understands B12 deficiency. I suggest being well prepared for any appointment by reading as much as you can about B12 deficiency.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Is there a PAS support group in your area? Support groups can be a useful place to share info eg helpful GPs.
B12 Deficiency Info website
More B12 info in pinned posts on this forum.
I wrote a detailed reply on the recent thread "Is PA heretedary ?" which may have some useful B12 info.
I am not medically trained.
Yes of course there is no guarantee that you will find a private GP who has good knowledge of PA , but I had 3/4 hour to talk to the private GP, not the bog -standard 10 minutes , part of which is taken up by the doctor typing up notes. I was also given the I.F.A. test
I didn’t want to go privately , but I was reallly desperate . My NHS GP was not interested in anything I had down loaded . I was told never to take any notice of anything I saw on the Internet . . This was 3 years about . Perhaps things are better now .
GPs are allowed to prescribe B12 more than every 8 weeks. My GP has me on fortnightly injections.
Hydroxocobalamin is licensed for 8-weekly administration. But there is nothing to stop any GP from prescribing outwith the terms of the license (it's called 'off-label') as long as they comply with the following...
gov.uk/drug-safety-update/o...
They should...
Be satisfied that an alternative, licensed medicine would not meet the patient’s needs before prescribing an unlicensed medicine
Be satisfied that such use would better serve the patient’s needs than an appropriately licensed alternative before prescribing a medicine off-label
Be satisfied that there is a sufficient evidence base and/or experience of using the medicine to show its safety and efficacy
Take responsibility for prescribing the medicine and for overseeing the patient’s care, including monitoring and follow-up
Record the medicine prescribed and, where common practice is not being followed, the reasons for prescribing this medicine; they may wish to record that you have discussed the issue with the patient
My doctor was quite happy that there was no licensed alternative that would better serve my needs and that there was plenty of evidence that the off-label treatment was perfectly safe.
Well it’s great to hear that. But I doubt whether many PA patients get such good treatment, when a 3 monthly injection is insufficient . We hear such tragic stories on this forum . I think that you have been extraordinarily lucky . The treatment you get from your G.P is very rare, I imagine. How can one persuade one’s GP to follow that guidance ? They dig their heels in , and refuse. My GP maintained that too much B12 was toxic , and all the GPs in that surgery agreed . In the end one has to give up, and self - inject .
Well I’m sure that your posting has given many PA patients great hope , but I’m afraid that they will be bitterly disappointed.
Thanks for that reference . I have printed it out.
One doctor in the North of England (Durham?) got into awful trouble for over- prescribing B12 injections . He was suspended .
Edited by Admin to remove name of GP
fbirder wedgewood
There are some GPs who are totally put off even thinking about the possibility of prescribing B12 more frequently by the current licencing arrangements - probably because they don't really understand them.
A number of GPs have been investigated by health authorities for seemingly over-prescribing B12 injections. This involved temporary suspensions during the investigation, which is a very unpleasant experience. However, I am not aware of a GP who has suffered a permanent ban post investigation specifically for over-prescribing B12.
One GP was forbidden to prescribe B12 or steroids for people suffering from fatigue.
His definite over-prescribing B12 is obviously partly responsible for the reluctance of other doctors to go off-label.
Prescribing medicines for a condition they are not licensed for is quite different to prescribing a medicine in a higher dose than that it is licensed for.
Edited by admin:
Admin note: other GPs have suffered similar problems so not clear that there is a direct link between this case and a more general reluctance to prescribe off-label
Dottyspotspot I am going to close this post to further responses - hope that someone is able to help through private messages/chat facility.
The ability to reply to this post has been turned off.
Anyone recommend a good probiotic? 
Alternative therapy recommendations 
GP stopped B12 injections
letter to GP and question
GP visit and victory. 
