Funny Goings-On in Norfolk

by | Mar 22, 2017 | 6 comments

Funny Goings-On in Norfolk

Mar 22, 2017 | Patient Stories & Support, Pernicious Anaemia | 6 comments

There’s some strange things happening in Norfolk and I’m more than a little concerned about what’s going on.
A phone call to the office yesterday (one of 14 we took) made me aware of some dark arts being practiced in a rural community health centre. The lady who called had been diagnosed with Pernicious Anaemia 15 years ago. Last October a new doctor at the practice told her that “new guidelines say we have to treat PA with tablets now and injections are a thing of the past”.
My spirits, which weren’t particularly high anyway began to sink.
The caller went on:
“The thing is I’m getting all the symptoms back. I’m constantly tired, I’ve got pins and needles in my feet, I’m feeling depressed and I can’t function at work”.
My spirits took another nosedive.
I asked what strength tablets she was taking and how often;
“They are 1mg Cyanocobalamin tablets and I take one three times a week”.
I asked where she got them from;
“They’re prescribed by my doctor and I take the prescription to my local chemist”.
Now this was interesting because as far as I’m aware 1mg cyanocobalamin tablets are not available as a prescribed tablet. The biggest strength available on prescription is a measly 50mcg, which is totally unsuitable for treating Pernicious Anaemia. Because oral treatment rests on the premise that around 1% should be passively absorbed in the stomach taking a full 1mg would mean that around 10mcg should be absorbed, which is four times what a normal person would need on a daily basis. I don’t want to go into the arguments against using oral tablets now but I will remind my readers what the latest Guidelines on Cobalamin and Folate say:
“the efficacy and cost–effectiveness of oral treatment in wider population-based settings has yet to be established. There are arguments against the use of oral cobalamin in initiation of cobalamin therapy in severely deficient individuals who have poor absorption, especially due to pernicious anaemia”.
Enough said.
I asked the caller if she was sure that it was a 1mg tablet that she got from the pharmacy.
“Oh yes, it’s 1mg. The funny thing is though that they come in a plain brown paper bag without any patient information leaflet or anything”.
See what I mean about there being funny goings-on. I shall make some more enquiries and keep you up to date.

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  1. Rhonda

    I am taking tablets and my symptoms have gone away. My case is a little different though. I had my DNA run and found out that I have MTHFR type A. I take 5000 micrograms of methyl B-12., 400 mcg of methyl folate along with D3 and B6. My blood test now come back normal. The shots weren’t helping anyway because my body can’t process the fake kind of B-12. I have to stay away from folic acid also and only take methyl folate.

  2. Clare

    Well that certainly sounds dodgy hope you get to the bottom of it before to many people suffer unnecessarily. Good luck.

  3. Michelle

    That’s an insult to the patient concerned, interested in the outcome of this.

  4. Sue c

    Yes, very funny. And not in a good way. Is it time to step up efforts to make self-injecting the norm and change the law to make B12 ampoules (of whatever flavour) available OTC?

  5. Kirsten espensen

    Very odd! My doctor recently did a strange thing – after sticking his neck out and giving me loading doses of B12, despite my range being ‘normal’ and testing negative for parietal cell antibodies, he then relegated me to twelve weekly injections. I’d already given him some of the PAS printouts for medical professionals, and he was very interested and understanding, but as a locum, not able to do whatever he wished. Whilst I was in the surgery with him, I also asked for a repeat prescription of Thyroxine (I’m hypo-thyroidic too). Just before I left, he said I needed to tell him if I intended to self-inject – so I came clean, and said yes, I fully intended to do that as once every three months wasn’t enough. Anyway, when I went to the pharmacy to collect my thyroxine a week later, what should be also waiting there for me, in my name, but two ampoules of B12!!!!!!! I was absolutely amazed! I guess it’s the doctor’s way of saying he understood why I was self-injecting, and showing his approval. It’s not enough as I’m self-injecting weekly at the moment, until I feel well again, but I was very appreciative of his kind gesture.

  6. B

    Rhonda, what do you mean by MTHFR type A? I have the MTHFR A1298C polymorphism, but there are many variations. And there are a lot of dubious claims made about MTHFR. I absolutely could not bear the methylated vitamins, in fact something very strange began happening on them, as if they made my deficiency worse. I ended up hospitalised. Cyanocobalamin shots brought me back to life. I don’t think it’s wise to classify them as fake b12.


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