I was diagnosed as b12 deficient over 6 years ago and put on injections every 12 weeks. I now have injections every 8 weeks. My doctors never bothered to ascertain whether I had PA or not. I am a vegetarian close to vegan and my doctor had put me on 10mg Omaprezole on a repeat prescription and I took them for some years but stopped then a year or so before my diagnosis hence it is just as likely that my diet and medication caused my deficiency as PA.
I have had a multitude of symptoms which are not typical of PA - nominal aphasia, poor memory, tinnitus, auditory hallucinations, peripheral neuropathy, blurred vision. Many of these symptoms disappeared some sooner than others and some persisted up until two injection periods ago. I have now gone 16 weeks with no symptoms whatsoever.
My next injection is due next week but given the C19 outbreak I am thinking that it would be best to delay my next injection both to avoid infection and not to take up valuable nursing time during this crisis. I take a b12 supplement daily -10ug - and assume, if I’m not anaemic, that I will have b12 stored in my liver.
Does this sound like a wise decision in my part? If symptoms reappear, I can always restart my appointment. Obviously, I will consult with my doctor but I thought I’d ask the community for their opinion.
Stay well
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Alfabeta
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If you decide to wait I would take a much higher dose if oral b12 tablets to see you through. Posted is a PAS advise on this. Or Google it and it comes up.
I've wondered about b12 storage.
If dietry I assume still possible.
If an absorption problem not it seems.
Gambit6 gave a clear explanation of this .
It is difficult I know. Some surgeries have taken away the choice by withdrawing the b12 injections in this climate!!
If you have PA you’ll be unable to utilise the stores in your liver. If you don’t have PA your body should be able to utilise the B12 in supplements.
The problem is that you don’t know whether or not you have PA given that your diet and meds could well have caused your deficiency.
You might have PA but you might not. So basically it’s a gamble and you have to weigh up the risk of infection (and using up nursing time) if you go for an injection against the risk of symptoms returning if you don’t.
I’m sorry I don’t think I’ve helped at all and I wish I could offer you some clarity. I think it’s a personal decision.
It certainly sounds like you possibly do not have PA but that your deficiency may be dietary.
The symptoms you describe certainly are typical of PA.
The injections you have had, along with any B12 you have absorbed from the oral supplements will, in part, be stored in the liver. If you do have PA then it's unlikely you can make use of all of this. B12 in the liver is secreted in the bile into the duodenum. In normal people it attaches of Intrinsic Factor in the duodenum and is absorbed downstream in the ileum. In those with PA there is no IF. The B12 doesn't get absorbed and passes straight through.
I would take that oral supplement twice a day and keep a close eye on any possible return of symptoms. At the first sign call the doc and demand a jab.
"I have had a multitude of symptoms which are not typical of PA - nominal aphasia, poor memory, tinnitus, auditory hallucinations, peripheral neuropathy, blurred vision."
I would say that all these symptoms are typical of PA or other cause of B12 deficiency. I had most of them plus many others.
"I am thinking that it would be best to delay my next injection both to avoid infection and not to take up valuable nursing time "
I suggest you weigh up the pros and cons carefully.
Many UK GP practices are cancelling B12 injections during pandemic so it may be a long time before you get another one at GP practice. Of course any contact with other people increases the chance of infection so a difficult choice to make.
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
Many on forum source their own supplies and self inject. My personal feeling is that this is a last resort but many are being forced by current circumstances to consider this.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods.
I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Wow, Alfabeta ! It would be great news if your B12 deficiency was caused by diet and/or the Omeprazole - and is now finally rectified. Tablets would work even if you did not alter your diet. You could access the added B12 in Special K, Cornflakes, Kokomilk etc. too.
The risk is yours to take or not.
Nackapan suggests caution: don't change a thing if you have improved.
fbirder advises monitored experiment, with a phone-call to GP if it does not work so well for you. This is only a worry if you feel that it would be difficult to access a GP to get the injections reinstated - but that, for me, would be a legitimate concern at this time. I get the temptation to try this, however, especially now when risks have to be evaluated.
Have you not thought that the opportunity to be taught self-injection and having access at home to B12 and sharps would allow for a less risky means of trialling withholding your treatment, in that the alternative is then immediately accessible ?
Would the practice nurse consider teaching and supplying you - less of a risk for both of you? Some others are being offered this option now.
Happy for you, just worried you might have a "blip".
As the others have said, all of the symptoms you mention are B12 deficiency symptoms
(PA "symptoms" are B12 deficiency symptoms), some more common than others, and you will find them on lists compiled by research/surveys on those with the condition (eg PAS, B12.org etc) -rather than medical ones which are often quite sparse ( and which can cause endless problems at diagnosis stage for that reason: not everyone is megaloblastic for example).
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