Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give me a big loading dose. So then after 30 days, I've now gone to having shots every other day. So doctors and such have told me I only need B12 once per week and then finally once/month. I think 1/month or even 1/week is too little. What say you? Also, on a separate note; my wife who has had pretty much the same symptoms as me, had the IF test but only for the IF-blocking antibodies, hers did not include the parietal cell antibodies. She also had a homocysteine test that came back low, so the docs said she did not need the parietal cell antibody test because of that. Do you all think she should definitely have the test for parietal cell antibodies as well to rule it out or am I being too paranoid?
Thanks for listening and helping so much.
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MrJustatip
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She waited about 10 days before test. The Dr ordered the test, but for some reason only asked for the blocking antibodies part. The if came back as negative for the blocking antibodies.
You just need to find out by trial and error how often you need to inject to keep your symptoms from returning . The regularity needed will vary from person to person —can’t lay down any particular regularity . Your doctor shows his misunderstanding of Pernicious Anaemia when he says you will need once a week . It may turn out to be accurate , but that would be coincidental . Try every other day to start with , then if there’s no return of symptoms , try every 3 days and so on .
You don’t mention the result of your wife’s Intrinsic Factor Antibody test .
Her IF came back negative for blocking antibodies, but they did not test for parietal cell antibodies. Her homocysteine came back low as well. I feel we only have half of the answers.
Your doctor should know the fact that about 50% of Pernicious Anaemia Patients actually test negative for Intrinsic Factor. The antibodies do not always appear
There is no single test for P.A. Doctors are supposed to use their detective powers . Symptoms should be treated . With low homocysteine results , and b12 deficiency. symptoms , she should be given b12 injections.
That’s providing she eats B12 containing foods , does not have helicobacter pylori , no fish tapeworms , no bariatric surgery , does not take medicines that hinder B12 absorption ( metformin and others ) does not abuse Nitrous Oxide ( laughing gas )
All P.A. patients do not have positive parietal cell antibodies .
There is no easy way to know the right frequency of dose but you will certainly know if the dose is too infrequent.
I tried every other day for 6 months then for the last 5 months been every day and I feel much better. Occasionally I can miss a day but I start to feel heavy and as if I am falling apart so I go back to every day.
You must do what FEELS right for your body there is no should or ought or one size fits all guidelines as the medics like to think.
Walk your own recovery path with confidence. We are all cheering you on!
Sorry cannot comment on your wife’s issues as that’s over my head!
Frequency is a tough one and I think we're all so different. Personally, I started out weekly for about a year. Then went to monthly for maybe six months, now I'm at every 4 to 7 days and have been this way for the past year and a half. So how do I know? I can feel my body somehow asking for it? It's hard to describe because it's not like after the fourth day all my symptoms come back hard, but rather I will feel a bit more fatigue, or my tingling in my foot will seem a bit worse or strange sensations. I'm not sure if that makes sense. But when I feel that I inject, and then in about four hours to a day I feel better.
I think there's no hard rule but you just somehow will get in tune with your body after much practice. Try that, stretch out the intervals and notice how you feel each day. Journal it then after injecting journal any change noticed.
Regarding spouse, I would suggest stop supplementing everything for two weeks then have a PCaB and Gastrin serum test done. Although a positive PCaB is not diagnostic of PA by itself, that along with high levels (above normal) of Gastrin is considered diagnostic of PA/AMAG.
I would also add another IFaB test even though it was negative previously. The sensitivity of IFaB test is purposely dialed down to eliminate false positives. But over time as the disease progresses, there will be more antibodies and the IFaB will eventually show up on the test. Originally, I only had positive PCaB and very high levels of Gastrin. My Positive IFaB did not show up until 6 months ago.
It's rare to find a doc who truely understands b12 deficiency.
Is your deficiency caused by diet as in not eating meat, then oral supplements will help and injections can be stopped at some point.
Otherwise if you were eating plenty of meat but still got low that means the cause is metabolic. You simply are not absorbing it orally.
How frequent were your injections up until you started daily?
What was your b12 level before your first injection?
If they were weekly and you didn't get much improvement, I would say daily is going to help.
Stick with daily or EOD indefinately. It can't hurt. Don't let anyone tell you otherwise. since b12 levels won't be accurate once injections are done, that means no testing can help you determine your need for injection frequency other than clinical symptoms, meaning your symptoms and their improvement.
I listened and spaced out injetions and it just prolonged and slowed the progress. It wasn't until I just did what worked for me and ignored the docs that I got better.
It's the clinical experience in the end that really helps thus the feedback you get in this forum is priceless. No doctor will be able to give you better advice than this place for b12 deficiency unless they have personally suffered it or have an understanding that medical science isn't always complete and thus sometimes things just have to be figured out clinically and that, clinical based medicine is good medicine when applied in the right case and the right time.
So inject away! do what works well for you. It takes 4 years to get depleated so it will take a long time to recover. the more you space out the injections, the longer it will take.
My b12 level was originally 190 and I was bed ridden with fatigue; couldn't walk more than a mile due to nerve pain; intense brain fog.
Now 2.5 years later I'm climing mountains but it's because about 3 months in, I stopped listening to the docs and just injected daily using my own supplies. And a lot of that recovery came from the guidance and care this forum and PAS has given me.
Regarding your wife? The test she really needs is serum b12 (before any injections haave been done), blood cell count, and maybe size. I say maybe size because docs sometimes will argue there. The biggest thing was b12 level. Once you know its low, you know injections will help. As mentioned, the other tests are complicated, thus I just never look back and just do injections based on how my symptoms are.
I absolutely cannot space out injections. I must have them daily/EOD at a min even still. Who knows, maybe a few years from now that may change. The more active I am the more I need.
Thanks for replying. I was diagnosed as PA due to IF blocking antibodies, so orally or meat would not work anymore for me. I am just getting a lot of negative backlash for having B12 Methylcobalamin every other day. Now, I'm being told to sI once a week then after a month 1/month.
Also, an important fact the arrival points out as well is that the neurological damage can become permanent if left untreated. I figure that by the time we are found to be low, there is enough damage done and thus no time to settle for anything less than frequent injections which will help you heal.
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