I just wondered if anyone else has had a problem with prescriptions for Hydroxocobalamin being stopped? I self inject once per week, I changed GP's two months ago. On my medical file there is a letter from from my Neurologist confirming that I have neurological symptoms and need to inject every other day until symptoms stop improving (I am now down to one per week, I tried reducing to every three weeks, but kept getting muddled, could not speak properly and memory was chronic - one jab per weeks seems to be just right for me). There is also a letter on my file from a gastroenterologist at a well known private hospital confirming that I have PC antibodies and that I have PA rather than B12 deficiency.
My new GP has not discussed the above with me, so I was surprised when I picked up my prescripton from the local chemist to find that my 6 ampules of serum were not there and the prescription details for same have been deleted from my repeat prescrition form. I spoke to the receptionist to query this and she said the doctor is not prepared to give you 18 months supply in advance and you won't be getting any more, I explained that I self inject weekly and she just kept repeating "I am not medically trained". I have requested a telephone call from my GP next week.
Just wondered, has anyone else had a problem and any suggestions on how I should tackle this one.
Many thanks.
Anne
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HKAnne
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Many thanks for your reply. Yes, I was surprised that my medication was just "stopped" with no explaination, just a message via the receptionist after I queried my "missing" prescription.
Thanks also for the information above, I feel well armed with all the valuable information I have gained from PAS over the last 12 months and feel ready to go into battle next week.
If the worst comes to the worst, I will just have to purchase my medication on line like many of the other good members on this forum.
think reality is that you were very lucky with you previous GP. There are very few out there that would have agreed to the treatment you were getting.
The new GP sounds like they could be a pain. Might be worth putting key points about your case in a letter/email and sending it to the surgery for reference before you speak to the GP. And speaking t the PAS would be good
I have just spent all morning drafting a letter to new GP with copies of letters from my Neurologist and Gastenterologist confirming that I have PA and need to be injected regularly.
The old GP was worse, my Husband and I had a real fight with him to get the B12 serum, I was lucky that I had joined PAS and Martyn gave me some good advice to quote to the doctor, I think in the end the GP felt out of his depth (he quite happily admitted he knew nothing about PA and B12 deficiency) and gave in to us.
I am now finding myself thinking "the devil you know!"
Good on one level to know that you have been there before so know what to expect and have succeeded in getting things changed.
At the end of the day, if you can't manage to get the GP to play ball there is always the option of sourcing your own B12 eg from an on-line German pharmacy. If you pay for prescriptions then it will probably turn out to be a bit cheaper than paying a prescription charge for 6 - depending on how much you order
Thanks Gambit62, I dont pay for prescriptions as I have an underacive thyroid but you can't put a price on your health and I can't go back to how I was feeling pre weekly B12 shots, so will order on line if I don't get any joy from GP.
To take away your injections totally is potentially dangerous and if this is what they have decided, I hope PAS can support you.
Some GPs may not be aware of the Neurological Consequences of PA (and other causes of B12 deficiency). Some forum members have included info on this in letters to and discussion with GPs. My personal preference is for letters to GP as these are supposed to be filed with a patient's medical notes so are a more permanent record of issues raised.
I think they may consider reducing frequency of your injections as they may want to stick purely to recommended regime in BNF and BSH Cobalamin and Folate Guidelines for those with B12 deficiency with neuro symptoms...
A loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
The BSH Cobalamin and Folate Guidelines suggest a review of the every other day loading doses after 3 weeks so doctors may want to argue that your symptoms have stopped improving and that 2 monthly jabs should be enough.
I think in that situation myself, I would ask GPs what I should do if my symptoms return before next jab.
NICE clinical knowledge summary (link in my post above) suggests that GPs should seek advice from a haematologist for a patient with b12 deficiency with neuro symptoms. Have you seen a haematologist or has GP contacted one?
My experience is that B12 deficiency is not as well understood as it could be amongst GPs and specialists so a haematologist may not be supportive of weekly injections.
Can you prove that your symptoms return quickly after a jab?
Do you keep a symptoms diary?
Do you have anyone who can go with you to next appt and vouch for the fact that your symptoms return or possibly put it in writing?
Many thanks for this. Luckily I have a letter from my Neurologist quoting the BNF guidelines, so I have included this in a copy of the letter I will hand deliver to the Surgery on Monday.
After 15 months of misery with hashimotos thyroiditis, anemia and Pernicious anemia, (all diagnosed at the same time October 2016) and more recently pre-diabetes, I was just starting to feel normal again, but I refuse to let this ignorant GP get the better of me.
Thanks again for your support, so good to have you on side.
Sorry, I re-read your comment and noticed I missed some things, my old GP said he would refer me to a Haemotologist 11 months ago but he never bothered, he said he would also refer me to a rhumotologist but never bothered - these are some of the many reasons that I left his Practice.
I do keep a symptoms diary and my husband is fantastically supportive and frequently attends appointments with me.
The only proof I have of symptoms returning if I do not inject frequently enough are my symptoms i.e. very forgetful (leave taps running, leave the house without locking the door or closing the windows), muddled, (forget words and get sentences back to front) absent minded (walk in front of traffic), can't seem to concentrate on one task (hop from one to the other and then forget all the previous tasks) and leaky bowels.
If you include extracts of the diary in any letter to GP then the info should get filed with your medical records although I would add that I think it's good to keep letters as brief as possible.
Hopefully the GP or haematologist would listen to anyone with you describing the changes in symptoms the longer you go without a B12 injection. My impression is that some GPs are kinder when a witness is present. Even better in my personal opinion if that person is well -read about B12.
"old GP said he would refer me to a Haemotologist 11 months ago but he never bothered, he said he would also refer me to a rhumotologist but never bothered"
Would your new GP consider referring you?
It is your right to request referrals...I sometimes did this in polite brief letters so it got filed...although GP does not have to agree with you and will probably only agree if they think it is clinically necessary.
Think you have a fair chance of getting a haematology appt or getting new GP to contact a haematologist as NICE link and BSH guidelines link mention contact with haematologist for people with B12 deficiency with neuro symptoms.
I have not met my new GP, they operate on a "telephone only" consultation, I am not sure how ill you have to be in order to actually physically see one. I did show my symptoms to my previous GP but I think he thought I was making it all up. My Husband, who, like me, has read Martyn Hooper's book from cover to cover spoke up for me when I was getting politely exasperated with GP.
You are so right, the consultants that I have met last year listened to both my Husband and I and respected that we were well read on the subjects (Hashimotos and PA).
My hydroxocobalim has recently been removed from my repeat prescription and when I queried this with the nurse she said that the surgery no longer has patients ordering the ampules and that they order it on your behalf when you book for your next injection! I thought that they were trying to control me as I’d been having arguments with them regarding the regularity of my injections.
Thanks to this forum, I have been self injecting every four weeks since 2015 and the surgery hasn’t picked up on this as the nurse said that the last injection I had was February! She didn’t query why I’d not been or even offered to inject me there and then.
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