My lovely GP retired a year ago and has not been replaced, and pressures on the Health Centre have led to the inevitable!
I showed up a couple of weeks ago for my two monthly B12 jab only to be told that my levels needed to be tested and a review of B12 required. I had been supplementing with sublingual drops in between injections as it was becoming more and more difficult to cope and the fatigue was getting worse, but I definitely hadn't wanted to rock the boat by requesting more frequent injections. Of course my levels were high and although they haven't stopped the treatment they want to space the injections out more and then test again. I was also told that as the sublinguals helped I may not need injections any more. My old GP had told me that testing was futile once treatment had started but that idea seems to have gone out of the window and presumably a cost cutting exercise is the way to go!!!
I may well be ok just taking the sublinguals but is it possible that they might not always work? I really do not want to return to the dark place I was in before treatment and I have worked so hard to get myself to a better place but I can see that if I'm not careful things could take a downward turn. I have definitely noticed that as time passes I seem to need more B12 and not less.
I'm trying to pre-empt the injections eventually being stopped completely and am considering SI if necessary but has anyone experienced resistance from their GP on suggesting this and if so what were the consequences. Is it better to just go ahead and not tell them?
Written by
firee
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You have been diagnosed for 4 years now, am I correct ? You are a Member of the Pernicious Society, are you not ? You have been having your Hydroxycobalamin injections free on the NHS but paying for sublingual ?
So, your the Big Wigs at your Integrated Care Board have updated their Rules. Rather like Schools saying we are now not teaching Triple Science. You cannot beat that System So, is it really a big hardship to Self Inject ? wedgewood will be along to give the details ?
One year, my Health Board decided to cut the Vitamin B12 test from 190 ng/L to 130 ng/L. Why ? To save Money. Your retired GP knew the information from the British Society of Haematology about re-testing. You knew it yet firee, you still let then take your blood to re-test. You consented to it.
When you do not consent, in law, it is the tort of Battery. Years ago, a male doctor wished to weigh me and 3 times I politely declined. He was rather irate and if a Clinician does not have the expertise to undertake an approximate of this by sight, I know they aren’t very good at their job.
So, the best way forward is to once you have started SI, write a business like letter to the Practice with your Name, NHS NO., CO Unit NO., stating as of [ Date ] you have commenced 1mg/ml Hydroxycobalamin i.m. to treat your Pernicious Anaemia / Vitamin B12D which was diagnosed at [ time ] on [ date ] by [ Name of Doctor ] at [ GP Surgery/ Clinic/Hospital ].
So, in the future, any Doctor, Nurse, Phlebotomist, Receptionist knows. This letter should be added to your notes. When you actually do speak to a Doctor regarding your PA/B12D. You simply state, You have got a copy of my letter dated whatever ? I guarantee that they say, No. Then you simply say, Doctor, you are aware of the Data Protection Act 2018 ? All Records pertaining to my care, by law, have to be obtained accurately, stored properly, transferred correctly and easily accessible. Now, Doctor, you were saying ?
That’s the devil of a question! I told my GP that I was having to self inject to keep well , and then my 3 monthly NHS injections were stopped ( I had completely numb feet , which I was told was “idiopathic “ and nothing to do with P.A. so GP refused 2 monthly injections)
I was told that I was the only P.A. patient who wanted more than 1 injection every 3 months . This I knew to be untrue because I was organising ampoules from Germany for 2 patients at that surgery who needed extra injections . But they did not inform their doctors , so were still receiving their NHS injections.
So , it’s up to you ………………. But whatever , I advise self injecting . Your health is the most consideration !
I’ll send you all the information you need to your private messaging site . It’s quite a long piece!
It’s such a catch 22, informing your doctor of SI, isn’t it?
If they don’t know we self-inject (or that we find 3 monthly awful for symptoms), then how will they ever know that the injection regime is insufficient? And if it’s only you saying you need more, you are an anomaly rather than the norm
But when we do tell them of the frequency or request more injections, they freak out and try to stop us. Or refuse. Or test the levels. Ad nauseum.
Continuity: I had the same observant GP from the start - it was her that recognised I was not doing well on the B12 injections, her who got my MMA tested. Her who diagnosed me with functional B12 deficiency and who started my B12 injections again at 2 per week . Her who sent me to various consultants to be tested for anything else that could be wrong and her who sent me to three different gastroenterologists because she did not believe that IBS was the primary problem.
So, when it got to the stage that a locum haematologist told her not to exceed the guidelines, not to give me more than 1 injection every 2 months, it did not surprise her that I started self injecting EOD (a frequency I'd never quite managed to get). I did not tell her until the day after I'd started - just in case she tried to talk me out of it. She didn't.
Once, she had said to me that none of the other patients with functional B12 deficiency had asked for more frequent injections. ( I'd already asked a nurse how many patients that would involve: "three or four". ) She had known to request an MMA test because one of her patients had had the same problem a decade previously. I asked her how she would know. She looked surprised. I said "What if they are self injecting - and not telling you ?" It really hadn't occurred to her that anyone might do that.
Later, when I had to see another GP while she was on holiday, a new one, I saw the panic in his face when told that I self inject .... and he had my NHS injections stopped. When I told my GP on her return and showed her the letter, she said that nothing would change in terms of monitoring (folate, ferritin, vitamin D, thyroid etc)- but not B12 as "pointless".
So, nothing did change - until four GPs left the surgery. Including both of the above.
Square one ?
firee - I understand why you would not want to go "back there" ever again.
I think whether or not you are honest with your GP entirely depends on the relationship you believe you have with them. Mutual trust is important. Because I felt that I could trust my primary care professional, I was also able to be honest with all the consultants I saw.
The new GP may yet learn to be of more use to his patients regarding effective treatment of B12 deficiency. But not from me.
You shoot yourself in the foot if you tell your doctor you are having your own injections too. Gives them an excuse to dislike you and refuse you theirs. Do it secretly if you feel you need to.
I've never told my G.P. that I SI, but then again I haven't said that I don't. When asked if I supplement between injections, I truthfully said yes. Doc assumed I meant with pills, I didn't elaborate. I know from the mentality of the Docs at my surgery, that it will cause problems if I tell them. Some battles just aren't worth fighting. My health is more important.
Kind of sad that your GP doesn't appear to know what they're doing. I'm curious why they keep testing rather than simply treating you. It seems unlikely that it is saving much money.
Anyway probably time to take control and follow the excellent advice of Wedgwood.
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