Recovery timeline

[Ctadds1]

Hello

I am curious how long it took for some of you to “recover” from B12 deficiency. When I say recover I mean having the majority of your symptoms subside? I am 5 months into treatment and I would say I’m about 60% better than at my worst. I don’t know if this is something to celebrate or if I should be concerned I’m not healing faster. I know this is so very different for everyone (tons of variables) but I’m just curious on average how long it takes. My doc is not very helpful, she seems to think since my levels are up ( I get monthly injections) then I must be cured. As always, thank you!

[Nackapan]

I think yoh should celebrate. 60% improvement over 5 months amazing.

[wedgewood]

If you have Pernicious Anaemia, you are never cured ,and treatment is for life . But as we all know , to our cost , there is no 100 % test for P.A. Many of my symptoms disappeared within 6 months , but I am left with “burning feet “ which after 5 years of weekly injections do not go away . They only feel burning hot to me , but are normal to the touch . But they have improved , because they were totally numb 5 years ago . You will find a huge range of reactions ,as Pernicious Anaemia varies so much .

[mcg-woo]

Hello! I know that in the US, a monthly maintenance injection after b12 numbers rise is standard . However since you are still symptomatic, I think it’s likely that you aren’t receiving injections frequently enough though full recovery can take some time. My neuro told me one full year for the brain to recover from low b12 after numbers look good. I had weekly injections for a few months, no true loading doses-and was switched to twice monthly after numbers were over 2000. I feel like I continued to improve over a period of two years. However, I feel like I could have recovered quicker on weekly doses for longer now that I have some additional experience behind me.

I would explain to your doctor that you still have symptoms on the monthly injections and you want to feel better. I actually took the book, “Could it be B12?”to my doctor after reading it and beginning some research. Either she already knew a significant amount about B12 deficiency (her patient population is mostly geriatric) or she did some research based on my situation. I am much younger than her other patients and I feel like she really wanted to help me. It can be a tough battle to get adequate treatment, but one that is worth it.

I honestly don’t know how the folks on this forum go 4weeks, 8 weeks or 12 weeks without injections and can fully understand why they self-inject without a valid Rx. It is simply cruel not to give folks the frequency of injections they need to remain symptom-free.

It still amazes me that this is a controversial issue. In the US, I have often wondered would B12 use be more prevalent if it wasn’t so cheap and there was more money to be made? The senior populations used to receive B12 injections here and for some reason , it fell out of favor. No drug companies pushing B12 injections for the elderly here. I believe B12 injections for those over age 60 would dramatically improve the health of many Americans and save much money in the long run by eliminating and preventing many health conditions. Not to mention dramatically improve their quality of life. Best of luck to you! I hope you get what you need to feel your best!

[MoKayD in reply to mcg-woo]

You are right about B12 deficiency being a forgotten issue here in the US. My doctor told me that during the 1960's doctors gave B2 shots to their patients like it was candy. He also told me each shot costs his practice a nickel. My GP is very knowledgeable about B12 and his patients are encouraged to come to the office to get shots whenever they feel they need one. I don't even have to make an appointment. I just show up, sign in, and within minutes a nurse calls me back and gives me an injection.

[mcg-woo in reply to MoKayD]

You are so fortunate to have a knowledgeable GP. I’m glad that you are getting what you need as well as other patients of that practice. I just wonder why the practice of giving B12 injections to seniors in the US went by the wayside? The only thing I can think of is that it’s cheap, not a money maker and therefore, not pushed by drug companies. Also, are they teaching much about B12 deficiency in medical schools these days? That can certainly make a difference as well. My GP is in her sixties and is knowledgeable. It frightens me to think that when she retires, will I be able to access adequate treatment? It just astounds me that so many doctors don’t know much about PA and B12 deficiency and they have different treatment protocols that can have great impact—good or bad—on the patient.

[MoKayD in reply to mcg-woo]

I asked my doctor why B12 went off the radar and he said he didn't know.

I am trying to spread the word about B12 deficiency and it's paying off. After hounding my sister for over a year she finally had her level checked. Her B12 was very low so her doctor started her on monthly shots. Same story with my daughter (who is a vegan). Her level was so low the test said it was unreadable. She is giving herself weekly shots. My daughter's doctor was shocked that someone so young could be B12 deficient. My friend talked to her doctor about it at their last visit and her doctor (a youngish woman) said well, why don't we give you a shot today and see how you feel. My friend could feel the effects right away. My friend's doctor put her on monthly shots without testing her blood.

Maybe if we are all very vocal about the problem it will, once again, be a thing doctor's look for during routine physicals.

[Bellabab]

60% recovery within 6 months - 80% within 10 months - I suspect I will be self injecting every other day for anything up to another 14 months. I notice improvements then realise I had not seen it was a symptom until it improved. Currently the most interesting is how long term memory is improving and the return of dreams.

[Seth12345 in reply to Bellabab]

Have you been injecting EOD all along? Do you take any other cofactors like a b complex or folate supplementation?

[Bellabab in reply to Seth12345]

Yes I have been self injecting EOD all along. I also take folic acid, vitamin "D", Omega 3 oil and a probiotic capsule. I also eat a small, slightly green banana every morning to ensure no potassium deficit.