I want to share with you an incredible success story which I hope will offer hope and inspire.. A year ago I was diagnosed with PA - barely able to function at 106 ng/L. I started loading doses followed by EOD self injection and spent most of December 2022 to February 2023 in bed in pain, tearful and fearful.
BY CONTRAST …
Today I had a SAD call which meant I unexpectedly had to drive a 200 mile journey - spent 10 hours away from home with about 6 hours driving and an emotional meeting when I arrived.
I injected before I left, injected at my destination, came back and I injected again. Once home I chatted with hubby over a glass of wine🥰♥️
In stark contrast I had to do this trip in July for a HAPPY reason when I was injecting twice a day - I struggled to get there and hubby drove us down that time! I felt ill and anxious just going there, had to stop to inject driving back, fell into bed once home and took DAYS to recover.
The difference in coping with this unexpected challenge is beyond belief. I owe the success to a very dear and generous friend on this forum as well as the generosity and kindness of you all.
By sharing your experiences and insights I self treat. Thank you one particular dear friend as your generosity in sharing your experiences of taking different forms of B12 more frequently has helped me reclaim my life - of that I have no doubt.
I cannot put into words my gratitude. Not only did I row my own boat today but I was able to launch a rescue boat and go to the rescue of a young person and their family. I could not have done that in July.
I am truly blessed. 🙏🙏🙏
🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗
Written by
Wwwdot
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So pleased you have made progress in your battle against your deficiency.
We are all different and what suits one doesn't necessarily suit another. I have been injecting for over 3yrs now and have made some progress but still suffer many unpleasant symptoms - but I do have other autoimmune conditions to contend with. I often feel a little like Wizards credit card with dwindling funds.
The gut is a very important part of PA and like yourself have treated with kefir and such like. I thought about making my own kombucka but the thought of drinking it put me off, I would be no good doing a bushtucker trial. I am still awaiting a colonoscopy and if not ugently refered it's a 40wk wait !
After the results of my MRI stating a large part of my illium is inflammed I have been looking at anti-inflammatory foods. Tomatoes as much as I love them my digestive system doesn't. It's all trial and error and a case of waiting to be seen. I have requested the consultant puts some urgency to my referal - it seems urgency no longer exists within the dwindling NHS.
This is my second reply to your kind words as my first was lost as I didn’t press REPLY 🤪
Thank you for your kind words and I am sorry you are still having problems with your ilium. I have not eaten tomatoes for 10 weeks now as it was one of my pantry sweep items except once when my son made a lasagne! But last night I had to buy something to eat out of the house and I had bad stomach cramps afterwards so I am still not out of the woods!
I can vouch for homemade kombucha my son and mum love apple flavour and my daughter likes raspberry and mint. Not been able to get hubby to drink it yet!
Jillymo, we are rooting for you! You just have persevered so well for so long. I'm glad you have more information now to provide you a path toward solving more of your medical mysteries. Keep it up and let us know how things go!
That is disappointing. I am still waiting to see a gastroenterologist and have been on the waiting list since March 2023. Perhaps we could become sister kombucha witches while you wait 🤣🧙♀️🧙♀️
I waited over a year to be seen by a gastrologist. When I were reveiwed for an appointment one of the consultants knocked me off the waiting list and refered me back to my hematologist. She then refered me back to gastro. I were told I would need a gastroscopy before being seen by a consultant.
On my appt date to be seen by a consultant my app was cancelled because the consultant went on strike ! This also happened on my second appt which made my waiting time even longer. When I eventually saw the gastro he asked why I had the gastroscopy ! 🤔
When I eventually saw the consultant he requested both an MRI and an ultra sound which have now taken place. The consultant wrote me saying a large part of my terminal illium appears to be inflammed in keeping with crohns disease. He went on to say what they would normally do is look at the area with a telescope. If that be the case why the hell has he not gone ahead and booked a colonoscopy ? ? ?
He went on to say - if I want to discuss further I can phone him or see him face to face in another appointment ! I couldn't ring his secretary because he doesn't have one. 🤔 I emailed without a response ! After some perseverance I managed to speak to one of the other secretarys who is now arranging the colonoscopy. This is turning into hard work it's as if patients are now doing what used to be the consultants job.
Sadly I think the patients do need to manage the progress through the NHS - I am having to do that for my hubby, my mum, my nephew and myself. My two children who I think also have B12D have been abandoned by the NHS as they are “ok” in their eyes.
Getting healthcare is a full time job in itself and I am finding like you that I have to chase up referrals, results, medication changes etc. it’s hard work and when we wonder why we feel exhausted it’s little wonder as all this admin is on top of managing our condition.
Anyway, the good news is that you are making progress even though it must feel like walking through treacle at times.
‘You put a Gastro in, You take a Haemo out, you put a Neuro in, You take an MRI out, you SHAKE it all about, You Chuck an Email in, You Get Nowt out, You pick up a Dog n Bone, You get an Answer out, You Turn Yourself Inside Out, You Get a Secretary to do a Specialist’s work. That is what it is ALL ABOUT. You pick yourself up off the floor because you are your own Doctor, Care Coordinator and Record Keeper.
I hope the Hospital Porters have received appropriate training to undertake the Colonoscopies. No wonder, I paid private for mine.
My Friday Feat was remarkable and a milestone and it’s made me reflective and more aware of how incredibly lucky I have been in the last year. The lows, uncertainty, fear and finally a high. What a rollercoaster of a life we are all on. I am so immensely grateful for this forum.
Dear Wwwdot, thank you for sharing this - not only your journey and how different we all are in our needs with this condition, but also your thanks to the lovely folk on this forum - we know we can come on here, share our thoughts and concerns and ask for advice - no-one understands us more than those on the same journey. 😍👍
Thank you for your support. Yes whilst we all have things in common it’s only by sharing our experiences we can weave a health solution for ourselves.
I have tried so many options, suggestions, read so many books that I now have piles on every surface as my bookshelves are full and it is about experimenting and recording and thinking… lots of thinking and analysis. It’s hard when something doesnt work after hour and hours of reading and trying, so successes like my Friday Feat are uplifting and symbolic of the small steps it takes to manage this horrible disease.
I have so much to be grateful for and the incredible people in this forum are at the top of that list.
To be honest I am far more mentally tired than usual after my Friday Feat so I am resting yesterday and today. I have some kombucha to bottle so I will get the wood stove lit in the kitchen, put the radio on and do my brew 🧙♀️
Feeling reflective and grateful and very humble today.
Sorry to but in but I'm.really intrigued to know what kombucha is and what does it help. I'm.desperate for ideas of good things to eat/ drink for gut health.
Welcome to the conversation and never any need to apologise for joining in.
I came across kombucha by accident as my IBS was becoming intolerable and I could hardly eat without excruciating pain. I started drinking natural kefir as it was helping my symptoms and I got a book to make my own and in it was how to make kombucha. It’s made from tea and it is fermented and then you add flavourings and fizz if you want. It’s a natural culture of bacteria and yeast which make pre and probiotics which help settle the balance in your gut. I have been taking it for several months now as one of several strands to fix my IBS. It’s easy and cheap and I like the taste.
so glad to hear about the progress! It feels good and it only gets better. But in the early stages it did and does feel scary. I'm glad your seek light at the end of the tunnel. I hope you continue to see progress.
Thank you for your support. It has been a very scary year and I try to stay in the now and only fill my mind with positive thoughts.
A hidden no- cure illness is tough unlike a broken leg which gets lots of sympathy, understanding and support and which is temporary. If it wasn’t for this forum I dare not think where I would be as you guys understand the days of not being able to cope, the inability to meet expectations, the inability to think straight or to get up and get on.
My Friday Feat was a challenge, a little win in this long battle.
Originally they were 1000ug but then I couldn’t get these and so I got 1500ug instead. I noticed an improvement in my symptoms so I have stuck with 1500ug Pascoe.
It’s only when you look back that you realise that your daily struggles are at the boundaries rather than the fundamentals of existence. It’s so easy to lose sight of progress whilst head down battling on.
I post because I was unsure what to do after diagnosis but I knew I had to do something so chose the strategy of more frequent B12. So glad I did. Just hoping there will come a time where having reached a peak I can start to reduce the frequency. Until then it’s pretty much trial and error !
Wwwdot I am following your posts, bit like a stalker now I have gone from twice a week self injecting to twice a day and I am feeling the benefit. I am also a 61 year old female that have been ill for 20 years with a diagnosis of ME/CFS. I am going to stay on twice a day for a couple of weeks and then up this. Who knows I might get rid of my numb feet and legs. Thank your for all your input, it is so appreciated.
I feel very humbled by your kind words and WoW! to being stalked! 🤣🤣
I am not a medic, but an engineer and why? and how? are my baseline questions - in terms of the treatment regime offered by the NHS for Pernicious Anaemia, I have not found any satisfactory answers that indicate that the treatment is based on fact or at best quality research.
Therefore, I chose to examine and explore the experiences of members in this group who offer insightful and refreshingly balanced opinions and relatable experiences - as well as the fabulous books by Martyn Hooper.
Whilst I accept that we are all different in our causation factors and health status, what I find hard to accept is that our bodies also function differently in principle and I believe that the majority of components for healing and repair are essentially common to us all. We just need to find them.
I also believe that there is more we don't know that what we know (and I include even the most learned of people in that "we"). I also believe that we have lost a lot of natural knowledge and awareness over the last several hundred years, and that an open-mind is the only way to go, having said that I find it hard to have an open-mind when it comes to trusting medics or that I can rely on the NHS! (Narwhal being a very welcome exception).
I have formed the view that I have nothing to lose by experimenting in how I self-treat my PA and everything to gain... and that approach is a direct result of the generosity of the forum members taking the time to share their experience and contribute to helping others.
I really hope that you rid yourself of numb feet and legs - fingers and toes crossed for you.
I appreciate your reply We are so brainwashed by the medical opinions of what we should be doing and I had been working hard to get my self injections down to twice a week, instead of every other day. What you say makes perfect sense to me. I was also without any B12 whilst I was hospitalised start of this year for reactivated Epstein Barr virus, tonsilitis and strep B. On 4 strong lots of antibiotics. Antibiotics and dental injections always take my B12 down.
I also got gallbladder trouble 2 small stones and lots of toxic bile. The pains were bad on a scale of labour pains. Every 2 weeks I was in an ambulance going to A&E for pain relief. The ambulance crew would give me gas and air and a lot of the time I was waiting over 4/6 hours in A&E for a bed so that was a lot of gas and air. Which I learned takes down B12. I think I have bottomed out again this year, so to up my injections makes perfect sense. I already feel a tiny bit better. And my brain feels like it is working better. I am going for this
I so feel for you and also admire your tenacity. It only takes a slight lifting of the brain fog to lift my spirits and hopefully yours too.
No-one has ever been recorded as dying of B12 overdose that cannot be said for the lack of B12. On the balance of probabilities I know which horse I am going to back!
I wish you all the best and let’s continue sharing our experiences both ups and downs as we regain our health.
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I have gone from twice a week self injecting to twice a day and I am feeling the benefit. I am also a 61 year old female that have been ill for 20 years with a diagnosis of ME/CFS. I am going to stay on twice a day for a couple of weeks and then up this. Who knows I might get rid of my numb feet and legs. Thank your for all your input, it is so appreciated. 
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