Absolutely flabbergasted! As I mentioned in my initial post my GP wanted to try and treat my b12 def by oral supplement. I managed to persuade him to instead give me loading shots. I have just been to the chemist to collect some other meds and the prescription was there that I hadn't collected. I thought I might as well have them just in case I can absorb even a tiny amount. I have just looked at the ingredients and there does not appear to be any b12 in them! They contain niacin, riboflavin, b6 and thiamine. Quite how they were supposed to make me feel any better, I don't know!
I knew from reading about other people's experiences that I was in for a bit of a battle but it has now dawned on me quite how much the gps don't know!
Roll on Tuesday for my next appt!
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Padders12
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I don't want to stir the pot, but injections are not the only remedy for deficiency. Oral B12 as well as consuming raw liver have proven to correct B12 deficiency. I'd imagine dermal patches and nasal spray could as well. Injections are simpler in ways and last much longer. But they are not the only tool we have.
I thought I needed injections as I have neuro symptoms. My issue was more that the tablets he prescribed had no b12 in them! I may try alternative methods for treating my deficiency but will definitely use something with b12 in!
I'm not a Dr. and I have no idea what will work for any person. But I can say from reading a lot and my own personal experience, injections are not the only delivery method that will treat a deficiency. I don't know what tablets you were prescribed, I just wanted to clarify that oral B12 CAN correct a deficiency. Yes, it is a small percentage absorbed from tablets, depending on type, formulation and the individual. But same goes for injection. Much of it is not absorbed and used. I have never had an injection and I've had reversal of most symptoms (including neuro). Sometimes little symptoms poke through and I simply take extra for a few days. I do not get "burn out" when my shots wear off and I don't have to inject. I'm not "anti injection" 😂 And I know just about everyone here injects. I'm sure I will too, at least occasionally, mostly because I think it would cost less for me.
I'm sure it's only a small percentage of B12 tablets that is absorbed 1-2% if it isn't a dietary problem and not sure if anyone would like eating a pound of raw liver! But hey ho, everybody to their own. 😉
Hi Padders12 I think you need to ask your doctor to test your Folate level too as this and B12 helps your iron to function properly in your body and to make red blood cells.
I wish you well for Tuesday - let us know how you get on.
I had my folate tested and the result was 3.8 with a range of 3.8 to 25. I have started to supplement. Thanks for the advice and I will let you know how it goes!
"my GP wanted to try and treat my b12 def by oral supplement"
In UK, oral B12 supplements are sometimes prescribed for dietary b12 deficiency but for B12 deficiency linked to absorption problems, injections are recommended.
What does GP think is causing your b12 deficiency?
Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAs (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this to my GPs.
"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 book about B12 deficiency with lots of case studies.
PAS (Pernicious Anaemia Society)
If you suspect PA is a possibility or have a diagnosis of PA, it may be worth joining PAS. Costs £20 for a year's membership. PAS can offer support and info and in some cases can intervene on behalf of members.
Wow that's a lot to read! I have read some of it already and will endeavour to get through the test. I seeing my GP on Tuesday to discuss in a bit more detail. Thanks for the info.
Most GPs cannot recognise the symptoms, don't know how to investigate properly and then follow totally arbitrary and probably ineffective treatment schedules. Even as a doctor I made my own diagnosis, My GP didn't know how to test to make a definitive diagnosis and certainly had no idea about effective treatment.
My two sons, my niece and my brother have all recently been diagnosed also and all of the GPs seem to think that 50-150 mcgs by mouth a day is adequate treatment for B12 deficiency with neurological symptoms. Each of them has pointed out the inadequacy of the treatment and each has met with an absolute refusal to treat the condition correctly.
Amazon supplies inexpensive 1000mcgs B12 tablets. At my insistence my GP prescribed these for me and as a pensioner I don't pay. My son was given one month's supply which cost him more than three months supply for the same thing on Amazon.
I ordered injections from Germany and syringes, antiseptic wipes and safe disposal boxs very easily on line. It amounted to well under £100 for 100 injections! My husband injects me and is giving my son's booster jabs whenever we see them. My son's are both taking 1000mcgs a day by mouth. Only about a tenth will be absorbed but this has been shown to be effective in some clinical trials.
As a doctor I am disgusted and ashamed of my profession in which I used to take pride.
This forum provides excellent support and advice in the absence of intelligent diagnosis, investigation and treatment by those who should know better.
PS my grandmother was not diagnosed until she was paralysed from the waist down with subacute combined degeneration of the spinal cord - an irreversible condition that fails to respond to B12. It is therefore essential that you take effective and timely control of your own treatment.
I have my GP appt tomorrow so will see what he says. I don't want to take anything yet as don't want to interfere with any further tests. But as my numbness and tingling hasn't gone after my loading doses don't want to wait too long. I am feeling a little better but not enough. If I don't get the treatment I think I need then am absolutely happy to take things into my own hands.
I worry for more vulnerable or trusting people who won't do their own research and will never know what's wrong with them, never get the treatment and may ultimately end up like your poor grandmother.
I agree with you absolutely. My son's and my brother were only checked at my insistence and despite being armed with the facts have received lamentably poor treatment. It is an absolute disgrace and I have no doubt costs the NHS and benefits agency a fortune as a result of perfectly avoidable disability that risks their ability to work and to remain mobile and able to take care of themselves. The correct treatment is in fact extremely cheap so it really is a case of penny wise and pound foolish - probably millions of pounds actually. You couldn't make it up!
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