GP won't prescribe B12...

[KathrynRose]

I've recently moved and joined a new GP practice. I saw the practice nurse who said she would sort the prescription for my B12. When I phoned the surgery to see if the prescription was ready, I was advised I'd have to have a blood test first. The results have come back and I'm within range and I can't see a GP for 2 weeks. I was diagnosed with PA 13 years ago and B12 literally changed my life. I have all the familiar symptoms when it's running low - mouth ulcers, breathlessness, lethargy etc. When I was first diagnosed I was borderline but fortunately I had a good GP who started me on B12. I'm stuck now as I'm due an injection, starting to feel ill and I can't even see a GP for two weeks and I suspect I'll have a fight on my hands even then. Does anyone have any suggestions?

[fbirder]

Yes, I have a suggestion, but it may mean your GP calls the police (maybe after he calls a proctologist).

Were you actually diagnosed with PA specifically? If so then you will need treatment for life. Refusing it because the treatment happens to be working is as lunatic as telling a diabetic that they can't have any more insulin because their blood glucose was low today.

Here's my document summarising some key points - frankhollis.com/temp/Summar... - click on the link to the BMJ paper and look at Page 4, where it says... "In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life."

Indeed, I would print out the whole BMJ document, highlight that sentence, fold it up until it's all sharp corners and insert it int... Whoops we're back to the cops and the proctologist scenario. Perhaps it's best to just give it to the GP.

With a bit of luck, that will provide sufficient evidence.

In the meantime you need to survive the next fortnight. If you have a Holland & Barrett near you pop along and see if they have any B12 sublingual spray or some sublingual tablets. If not you can get them from Amazon in a day or three. You might also try the B12 patches from Amazon (different people find different things work for them).

Good luck

[Twench in reply to fbirder]

We come for the good advice, stay for the dry humour 😆

[Sleepybunny]

I'd urge you to contact the PAS.

They have experience in helping people who have had their injections stopped or difficulty getting correct treatment. Lifetime membership costs £20. In some cases they can intervene on behalf of members.

PAS office is open from 8am till 2pm every day except Sundays.

pernicious-anaemia-society.... 01656 769 717

Martyn Hooper's blog may have posts that are relevant to your situation. Martyn is the chair of the PAS.

martynhooper.com/

Link about writing to Gps etc if unhappy with treatment.

b12deficiency.info/b12-writ...

[Gambit62 Administrator]

With Sleepybunny - think your best bet is asking the PAS if they can intercede with your GP on your behalf.

Another option would be to look at supplements as a temporary fix if you haven't done this in the past - it is only injectable B12 that is prescription only - other formats are just treated as vitamin supplements.

The options include: sublingual tablets, sublingual sprays (think Boost tends to be availabe in Boots), nasal sprays and skin patches. You would need a high dose - 1000-10000mcg a day is what is normally needed but it varies from person to person

[Twench in reply to Gambit62]

I agree with all who suggest stocking up on alternatives and joining PAS to get some back-up. Even when you get to see the doctor you cannot be of a positive outcome.

[clivealive Forum Support]

Hi KathrynRose like others I'm absolutely astounded that you are being refused your injections - surely your notes will have been transferred to your new practice and any doctor worth his salt knows that any serum B12 test is meaningless once treatment has started. I'm surprised the nurse wasn't more knowledgeable and proactive.

B12Boost spray can be got from Holland & Barrett for about £12 for 40 days supply of methylcobalamin to "keep you going" in the meantime.

I hope you get sorted quickly and wish you well for the future.

[denisehugs45]

Ask for a on the day appointment and if you have any problems ask them to contact your previous Dr for your medical records as all test for pa and past prescription will be on there x

[Polaris]

This might also be useful in educating your surgery Kathryn :

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. Important points from the Summary, etc:

* Vitamin B12 deficiency is a common but serious condition

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

* Page 4 under 'Parental Treatment' :

"In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life. "

The above BMJ research document is supported by many research papers and is peer reviewed.

Re. blood tests, It also states that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters - bottom of page 4 under 'How is Response Assessed' :

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."