I wonder if its a Poll we could do again?...as shared knowledge and experience is now 10 years wiser...? and many have questioned B12 Guidance from medical bodies.
Could it generate some useful learnings..? if we are trying to attract the interest and trying to influence the medical profession, then...all, and any data we have to share can help us all..?
If it does make sense? and isnt to had to set up? Can I respectfully request a new Poll..?
I will do it myself if there are so instructions to follow?
Many Thanks !
Treesong
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Treesong2023
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I think the PA Soc commissioned some research that reported recently/last year (search their news letter?) surveying PA and B12 Def sufferers, which included treatment and diagnosis or lack of, and if I recall correctly frequency of injections including SI and other experiences with engaging with medics.
It might have been the background to helping set priorities for research in future. Sorry too tired to look it up and patchy memory (noone here will be surprised 🙄).
I know when I read the survey findings it reflected a lot of my own experience and frustrations. And importantly I really felt heard and understood, so thank you PAS!
It's great that I notice you are curious and asking lots of questions here. That's really the only way to empower yourself with information and potential choices to help yourself. I have been so grateful for this forum over the years, I hope you find what you need.
RoMello, Hello - and thanks ever so much for the information..I will scout around and tag it back when i find it. I am very PA/ B12 Curious ! Yes, indeedy. I am very interested to hear about the total B12 load people took on at the point of initial " load up" to dosage and frequency of their everyday dosages after that.
Some people have reported having "loading up" doses EOD or ED for 5/6 months. So, they got 90+ml or 180ml load up's. I know it varies to the type symptoms/damage involved.
But I am keen on this as I feel there is a level of B12 resupply for functioning and re-stocking in the liver we all needed.. But also another amount needed/used to repair the body as well.
I suffered since 2012 but finally diagnosed in 2020 with serum b12 of 190. I was bed ridden, heart palpitations, muscle loss, swollen tongue, loss of appetite, severe back pain, sciatica.
Im now able to live normally for the most part and exercise as long as I inject daily. Any time over the years I skip, I get depleted and it takes a month to recover.
everyone is different, but this has been my experience.
it will depend on cause... if it's diet related that's a whole different thing. Oral supplements should help in that case after getting b12 levels up and injections not needed. For me, it's not diet related. I simply do not absorb b12. I was taking 50 times the daily recommended for 2 years only still to be depleted.
I recommend that daily injections are done until symptoms resolve entirely, and then try and space them out. If it's diet related, then switch to oral and see what happens.
hi B12..Yes, everyones story is unique ...I wonder what were your dosage levels were through those clearly awful times? Also, if you lost the ability to absorb, was it a digestive ailment that happened first..? If you dip after a day....it appears you don't store B12 either? Thanks for sharing B12 👍
well the fact that I got to 190 despite eating a lot of meat and orally taking 50 x the RDA of b12 told me I don't absorb orally. I tried supper high doses of oral b12, only to have adverse reactions from it and no progress. Thus I knew in my case I needed the injections. I was dosing 1mg daily for a week, then 1mg once per week but then I felt the difference, so after much trial and error and erroneously listening to docs who didn't understand b12 deficiency, I kept trying to space out the injections, only to end up back at square one. So a few months in I decided to do 1mg daily and got the best results. but it was and will be a very slow and gradual journey to being back on the feet because just as it took 4 years to deplete the b12, it takes time to repleate and for the damage to be healed. Docs should never let us get this low. I had symptoms at 600. only to be told I didn't need b12 and ended up with permanent damage that I may never recover from;
however, there is hope and I am able to function far better than I had imagined when I was suffering. when I was suffering it felt as if there was no hope, esp when injecting frequently things start to heal and the healing is painful. it's the things get worse before it gets better. despite feeling worse, my mind told me that if I wanted to get better I need to keep doing the injections to heal. when you suffer, you want to give up or skip. I knew that if I did that, it would halt or slow down the healing. After a month of the "getting worse", I got into the getting better significantly stage.
there may be symptoms of heart palpitations, high resting heart rate, and of course the fatigue, but I believe that is all part of the healing process. those symptoms for me did not exist before the deficiency, got worse through the healing stage but are gone now. I don't have an underlying heart condition, so if someone does and they are reading this, take that into consideration.
What strikes me in so many cases in here, is the fortitude and strength people have to show on their own. All without GP/Dr's support and understanding of the huge risks faced by their patients with suspected / probable PA/B12 Def. I had nerve damage showing at 517 in Aug 22, and I had been told it was just me being overly anxious, and too "health aware". I had nerve damage in my feet and hands confirmed by NCS in Dec 22.
Thank you for the description of the challenges faced, and the responses you took to literally save your life/health..from its dangerous path. I do see that you gained no benefit from the super dose of oral B12. I was just trying to understand why that was? As you must have been able to absorb it at some point in your life? But given the difficulties in diagnosis, you may not actually know why.
In my case, it was series of GERD/ Gastritis and high dose PPI's. I was just looking for patterns of causality for PA/B12 Def is all.
B12Life - can I ask how long you were on the 1mg per day B12Life? and was that Cyan..? Or Hydroxy..?
Again, i send my kind regards for your feedback, and remain very glad to hear your actions / intervention took you out of the danger you faced and gain some recovery.
No idea why i could absorb it. Maybe i always had a slight problem with absorbtion that got worse with age and finally failed entirely. I do t take medications. I have had my gallbladder taken out, but 2 years before i was at 500. But there is no specific scientific evidence for correlation.
I must do 1-2mg per day, to this date. It's been 3.5 years. Cyano, because im in the US and that is all i could get to start. Hydroxo is hard to get so i gave up on that plus got impatient with fallbacks. I have been wanting to switch wither to methyl or hydroxo to see but so much going on in my life right now.
However i dont think that i will see a drastic improvement.
I mean, I know people that were perfectly healthy and had an autoimmune disorder rear up at age 45 and nearly kill them. our body is evolving and the b12 metabolic process is so very very complicated multi part process with various organs and no drive to really make main stream tests to diagnose.
I forgot to mention, I never got loading doses when I was first diagnosed 20 years ago. I got injected at the GP surgery 3 months increasing to 2 months after a fight, and always felt just about functional for 2 weeks post injection. I gradually felt worse and worse with no life.
Started getting fibromyalgia and balance issues despite injections, and finally decided to SI about 5 years ago. Result 2 doses a week! Keeps me on a more functional level, though still have to rest and pace myself carefully to doing anything demanding/tiring.
Gradual improvement in mood, fibromyalgia and energy levels, and stopped getting jumpy eyes when I got up in the morning. A lot of neurological stuff.
Told pharmacy during COVID when everyone was switched to oral b12 that it didn't work for me. So now on record officially as SI. Not seen GP about that since.
I am very glad to hear of your efforts and good results you have gained. Thanks again RoMello. I imagine things just not getting worse was a great result! It's amazing to me to hear how GPs leave people to fall into such poor physical states....even when there is physical evidence of recovery/good response its a huge battle for people fighting for their healthy lives (to various degrees) in many cases.
I would like to know if others have experienced a need to increase frequency or dosage over time. I started SI about 5 years ago, 2.5mg once a month. That soon became 2.5mg every 3 weeks. That worked for a while, then I started to experience symptoms about a week after injection, so started 2.5mg once weekly. I have been on that dosage for 2-3 years but lately I sometimes feel symptoms before it's time for the next injection, so I do an extra one. Is this common? I am concerned that my need for b12 may balloon out of control. I like to stay with weekly injections so that I can travel without taking supplies with me. Comments please.
Hi Lin, i am new to SI, so not able to share much. As you dont describe your overall physical / mental condition. Maybe you have any other health challenges. But could it be that your body is calling for more, as it needs more for repair? Are you very active...? Using up energy more? That could be part of your picture maybe?
Most importantly, do your physical symptoms recede after the SI? If so, i would listen to my body. Personally, I think there might be two phases to B12 SI usage. The initial intervention i.e. loading up phase thats individual to each person. Then there is maintenance dose you need for your pattern of life. Some SI users in here are on 25mg a day, I am in loading and about 5-6mg per day. Lots of people are 1-1.5mg EOD for long periods of time. Hope that helps to so degree.
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