First time writing and being on the forum so I apologise if this question has asked before. I have been diagnosed with PA for just over a year and a half and have 3 monthly B12 injections. Around the second month after the B12 injection I get a massive drop off. I get a metallic taste in my mouth, fatigue, joint pains and my mood becomes very low.
This has been a cycle that has repeated itself since diagnosis. I have an appointment with my GP to discuss trying to move to 2 monthly injections but I know the normal dose is 3 monthly.
My question is that when I went for my B12 injection yesterday I mentioned it to the nurse and she suggested oral B12 supplements to help me get through. As I was lead to believe that with PA B12 absorption due to no Intrinsic Factor means nothing can be absorbed. To get this information from a medical nurse confused me. Does anyone else take supplements or eat a more B12 rich diet to help fight fatigue, or is not something that would help in any way.
Really appreciate any help anyone can give.
Kindest Regards
Simon
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Barley_84
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Some UK forum members find high dose oral B12 helpful but for me it helps a little bit...not really effective for me.
With high dose oral b12 (1000mcg or higher) there is likely to be some passive absorption of B12 in the gut. I think from what I've read, probably 1 - 5%. I suspect it's very variable between patients.
There are moves in UK to put more patients onto high dose oral B12.
Links about oral B12 treatment
Note on oral treatment - from B12 Institute (Netherlands)
If you have time, search online for "Cochrane Review Oral Vitamin B12".
Also for "survey self injection b12 uk" which should show an interesting survey about patients who self inject B12 in UK.
"and have 3 monthly B12 injections"
If you have neurological symptoms such as tingling, pins and needles, brainfog, memory problems, balance problems, migraine, twitching muscles, incontinence (there are many other neuro symptoms) then I would expect you to be on B12 injections every 2 months.
If you have time, search online for this UK document "NICE CKS - Anaemia B12 and folate deficiency" which outlines the recommended treatment patterns for B12 deficiency.
I also suggest trying to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland which will outline the treatment patterns used in your area. Search online or search forum posts or submit a FOI (freedom of Information) request to your ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Some ICBs have local B12 deficiency guidelines that are not as helpful as they should be.
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
If you have neuro symptoms and GP is reluctant to move you to 2 monthly injections, might be worth showing them this PAS article about consequences of severe B12 deficiency.
PAS article about SACD, sub acute combined degeneration of the spinal cord.
Maybe ask GP to look in their BNF (British National Formulary) book at Chapter 9 section 1.2 or at online BNF Hydroxocobalamin entry - Indications and Dose section.
How many loading injections did you have when your treatment started?
If you had only 5 or 6 loading injections then that is the recommended pattern for those without any neuro symptoms.
If neuro symptoms were present before treatment started, I would expect you to have had this pattern of loading injections....
A B12 loading injection every other day for as long as symptoms continue to improve (could be weeks even months of every other day injections) followed by maintenance injections every 2 months.
Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.
Many UK forum members choose to treat themselves when NHS treatment is not enough. Some get extra injections from private GPs or beauty salons, some try high dose oral B12 and some as a last resort turn to self injection (SI). There is a pinned post about SI.
Lots more B12 info in pinned post "Various B12D/PA resources".
Pinned posts are on right hand side of screen if using computer. Scroll up or down to find them.
The nurse obviously knows very little about P.A., but then neither do most doctors, in my experience. I've tried oral supplements, but they don't work for me at all, although they do for some. The only thing that works for me is more frequent jabs, which I do myself weekly.
Here in Canada (Ontario) every person I know that has Pernicious Anemia and/or b12 deficiency has been given the spiel on pills/tablets.
It comes from a study that claims 1-2% of very high dose pill supplementation is indeed absorbed. Then 1-2% daily absorption could make a difference.
However, I believe that exact study said there was no proof it works for everyone that tries it. But they ignore that line when touting it.
I have tried it in between injections and have felt absolutely nothing.Gave my numerous bottles to a friend who is vegan.
I might give hydroxycobalamin drops a try. I would be thrilled if it worked.
So I want to defend the nurse just in case, as often nurses are up on newer health information & he or she could have known about this study on small passive absorption.
By virtue of the fact that you're "diagnosed" with PA I am presuming it is "autoimmune PA". The reason I make the distinction is confusion abounds amongst the medical community on the meaning of PA. Many people that are B12d and have reached a state of megaloblastic anemia are simply strict vegan and they are erroneously labeled/diagnosed as having PA. So doctors/nurses are confused. In the case of vegan or malnourished PA they will give some loading doses of B12 followed by oral supplements and on the next serum test where the B12 levels are up, label you cured and send you on your merry way. Well, that is true and that is like 99.8% of the B12d people they see. Then one day this wonderful mystical Unicorn walks into the clinic, that being you, with the music of a harp playing in the background. OK scratch the harp music, but unicorn yes!!!In fact, med students are taught this phrase as an approach to diagnose "if you hear hoofbeats, look for a horse, not a zebra.". Well we are a unicorn which is much rarer than a zebra even. So when we see a doctor or a nurse it is incumbent on us to communicate, educate, write your condition down on a half sheet of paper explaining your disease and hand it to them. Most importantly don't give up on being heard.
So, back to autoimmune PA. "Most", but not all, people who are diagnosed with Autoimmune PA have very or severely low serum B12 and/or megaloblastic anemia. This is a late stage manifestation of Autoimmune Metaplastic Atrophic Gastritis (AMAG), aka, AIG, CAAG. Late stage manifestation means you are not able to absorb appropriate quantities of B12. So, the answer is no, orally supplementing B12 by tablet or sublingual will not work.
I am personally very skeptical of sublingual B12 being able to absorb through under your tongue. The B12 molecule is far and above the largest most complex molecule of all the vitamins. There is a reason why this lumbering, clumsy, giant, is the only vitamin that needs so much special treatment, coddling, and hand holding throughout the digestive process. I hypothesis that sublingual B12 works for those without autoimmune PA not because the B12 is being absorbed under their tongue but rather that as the B12 is being desolved under the tongue, all of it invariable gets mixed with saliva and swallowed.
The recommended treatment of patients with B12 deficiency with neurological symptoms is injections of B12 at least twice a week for at least two years, then injections based on symptoms. Many people on this forum buy B12 from pharmacies in countries where injectable B12 is available over the counter. Germany is the most common source for people in England. These people then inject B12 as needed in order to control symptoms. The frequency varies widely from patient to patient. Medical journal articles by the most informed researchers state that patients who self-inject based on symptoms are the happiest, healthiest B12 deficiency patients. This link is to one of the most concise, most informative medical journal articles:
Daily sublingual high dose (1000mcg) worked for me for several years but eventually it did not. I now need injections. I need them about once per 2 weeks to keep the tingly toes away.
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