I heard you when you wrote you suffered less when taking more B12 than some said was effective.
I heard you when you wrote you suffered less when you 'topped' off'. Even though that is contrary to the concept of loading then maintenance.
I heard you when you wrote it feels like you need a B12 drip.
I suffer a whole lot less when I take more B12 and more frequently. Thank you.
I hear that some believe that what I experience and have experienced with intrinsic factor and transcobalamin differently is inconsequential to how I approach self treatment. I do not concur.
I am not doing the same thing only a little bit differently. I am self treating with the goal of always having enough B12 in my body to let it do what it needs to do. I am not expecting to ever reach loading then maintenance. It may happen, it is not my focus anymore as it is contrary to my understanding of my nutritional deficiencies.
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WIZARD6787
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If only our Drs believed us when we try to explain how poorly we feel. I can remember saying to her as I struggled to keep my balance and stand that I felt I should have been put on a drip !
It simply went over her head as she prescribed my loading dose and three monthly injections. When will they learn one cap does not fit all ?
I had no choice other than to take matters into my own hands and inject daily. If I do not I am in agony with the neuropathy, unable to walk and simply not able to function.
We may not reach our goal of fully regained health but we will be able to function even if only on two cylinders. 🙏
It's still early days with regard treatment so try and be patient as the healing takes place.
I'm a relative newcomer to this forum and the illness but what strikes me forcibly is that PA sufferers are continually exposed to the injustice of a rigid medical system. In effect, what doctors do to us is nothing more or less than gaslighting. The psychological consequences of gaslighting are deeply harmful and we have to deal with this harm as well as our anxiety about the illness itself and it's debilitating, life-altering symptoms. Apart from PAS and fora like this we are on our own. It takes a lot of courage to hang on in in a situation like this.
It is an enormous comfort to have PAS and this forum . I’m sure that one day the huge disservice that had been done and is still being done to P.A. patients , will be recognised . It is a national scandal . I’m so lucky to have found this forum and feel for those who haven’t , who have to drag their way through life for want of sufficient cheap B12 injections .
I would be so ill without this forum! It's definitely fair to say my GP is gaslighting me, and I end up feeling guilty for how frequently I SI... which is mad as I know I need it!
DO NOT FEEL GUILTY . You are doing the NHS a huge service .You would otherwise be in a bad state of health and having to be at the surgery with knock-on ailments that occur from neglect of PA/ B12 deficiency.
THANK YOU! I know for a fact this is true - when I was diagnosed i had been on crutches of 8 months and was scheduled for NHS surgery on both ankles. After 3 injections I could run upstairs (without crutches). It felt like a miracle. The surgery would have cost the NHS thousands....
I am not done improving yet. Evaluating is hard as I am in Scotland. I will know more accurately where I am at comparatively when I get back to the USA in a month and can experiencing hiking and swimming that I can evaluate. The increase of B12 and maintaining with my self treatment of B6 is a dramatic improvement.
It will not be just can I accomplish the hikes and distances I swam rather how I experience them and how I feel afterwards. There is a difference between resting from an experience and recovering from one.
I came to Scotland in the beginning of December. I had a downturn in February and March which I mistakenly believed was more reversing out when it was in fact not enough B12. I keep track of my steps per day with and I am back to my December levels. I do not use the step counter for goals rather a measure. I enjoy walking and hiking.
Simplistically I maintain the co-factors and the more B12 I administer the more I like being me. It is a work in process.
I am currently pain free for the most part and that is an improvement from when I arrived in December.
I had the humiliating experience of having a phased return to work - not back to my original job, but to my assistant's. Guess who had my job ?
Still, I saw it out until furlough, due to Covid lockdown, gave me an opportunity. Requests for voluntary redundancy gave me the excuse I needed to bow out. I have not worked since.
That sucks! The emotional toil of having B12 Deficiency is enormous as is the common experience with those in the medical field. Then there is the angst of deciding to self inject. The stress of deciding how much, how frequent and what form to administer and how to administer is over the top. Then there is the symptoms getting worse before they get better thing.
Trying to figure out if it is something else along with B12 Deficiency and for many dealing with other medical issues.
The disruption to one's life is all but overwhelming.
Did I mention that ya gotta do this while experiencing brain fog, fatigue and pain?
All the while being treated like you are the problem and seeing in other peoples eyes that they believe they could handle what you are experiencing better than you. Some even believe they have.
Edit: I forgot that everyone experiencing B12 deficiency does not experience the same symptoms. Except maybe FATIGUE. If only there was a forum where I could ask if everyone experiences fatigue. 😉
Wouldn’t it be amazing if doctors actually asked this and listened to all the answer? (and then tried to do something instead of going on the next patient)
if you are a doctor, I bet you are amazing. I actually have a team of doctors now (4 of them) and they ALL listen. It took a lot of years and a lot of (dare I say?) abuse and neglect before I found these people. Not surprisingly, I started with one of them and they referred me to each other. The common thread? They are old(er) and work for themselves and many work part-time to “give adequate time to their patients). I hope I didn’t offend you. I know there are indeed amazing doctors but there is so much pressure on them now to meet quotas, etc. I am blessed to have the docs I have right now and I let them know each visit!
Ah, gotcha. Was concerned I offended you. Doctors could learn so much if they read some of these forums. Yes, I often feel like a doctor myself; self-taught med school or the school of hard knocks!
…and if you are, indeed, a doctor it is amazing that you take the time to read this forum, or any forum, because it can really have an impact on how you see your patients.
I read your post from yesterday? and you mentioned B5 being a game-changer. Can you explain why/how? I am low in B6 (labs) but do not do well on supplements. Many indicators that I need it though. I have tried the P-5-P form.
After one year two months I injected B6 and my pain was reduced in 4 hours. Slept for a couple hours and woke up in less pain. 5 days later went tubing with my daughter at a ski area. It was wonderful.
As to the why I do not know and no one else does either. In some countries it seems to be standard with taking B12. One country mentioned here by someone else and I can not recall the country is selling both B6 and B12 in the same solution to inject.
it’s not. I am going to search for injectable P-5-P but not feeling particularly optimistic. I am very sensitive to B6 so I need to get the active form which I do better with.
I did a quick search hoping to get lucky. No luck. I could not even find a lozenge that was P5P. I will be able to get the liquid in the US which I take with water but can be taken with food.
I have to say that my GP, having requested that nurses administer three injections a week (but getting two, as nurses were "too busy") then monitored my recovery, and delighted that I was finally improving after three months on this frequency, decided to continue it !
The very reluctant nurses must have been appalled ! I really think this was the first time that a GP had ever asked them for this frequency.
[Despite this being a frequency recommended by medical guidance]
Sadly, she has now left - so I'm currently relying on Oral Medicine consultant to look after monitoring. Still, I feel more confident now that I would notice signs of folate or ferritin struggles etc.
“There is a difference between resting from an experience and recovering from one.”
Absolutely! I recently self injected every day as I was on a busy schedule and I felt great! I rested completely exhausted but was up and ready the next day.
Now back to “normal” life I realise when I self inject EOD I am also recovering EOD.
“I am self treating with the goal of always having enough B12 in my body to let it do what it needs to do. “ Yes Wizard, I am going to do this too. I will self inject every day now as I feel happier, more like the me of old, with more consistent energy and I rest rather than recover!
Fabulous insight - life changing post for me! Thanks Wizard!
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New guidelines
GP does not believe me
Thank you
B12 and spots!
