Hi all, I wanted to share a positive story of B12 deficiency diagnosis and treatment. My GP started me on loading doses in mid December after a serum B12 result of 202. Since then I've had every blood test under the sun which have all showed normal. Meanwhile he kept me on twice weekly injections after I quoted NICE and gave him my symptoms on a copy of the PA society's list.
I did then see a private consultant as I've felt a bit on a knife edge all the way through the process. He diagnosed me with Autoimmune Negative Pernicious Anaemia, and recommend I continue with twice weekly subcutaneous injections, which he taught me to self administer.
I gave my GP a copy of the consultant's letter along with a note to say I was going to self inject. Out and proud! And hopefully paving the way for others. I asked the GP if he would prescribe my B12 ampoules, and this evening had an appointment with him where he confirmed that he would do so. He asked whether I'd like 12 or 18!
I'm SO grateful to all in this group for helping to educate me, and giving me the resources to advocate for my needs. All through the process I've felt prepared and forewarned of the pitfalls. And I'm also SO grateful for an open minded GP who listens and thinks. Long may things continue 🙏
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Myoldcat
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Wow brilliant. .. . . You must have hit on the one in a million on every front. . . . . . . well done and best wishes into your future .. . . . . A brighter future
It certainly feels that way when I read the trials that so many others have endured. Just need to make sure everything is well documented and in my records!
Wow, well done for learning to inject without in-person help! Apart from a massive gastric episode for the last 10 days that I think was nerves waking up, my brain is clearer, my cramps and twitching have diminished and now I'm eating again my energy levels seem better. Seeing a bit of light...Thank you for your concern x
Bless you, I have a little glow after reading that! A fortunate set of circumstances. I hope my GP has a better understanding now, that's partly why I wanted to be honest about injecting even thought it felt a bit of a risk to tell him.
Yes, I told mine last year and was ok with it, even agreed to a 2 monthly injection from my 3 monthly, we are in discussion as he is waiting for the new guidelines to come out. He did admit I had not be treated by other doctors very well on previous visits. So I live in hope. Well done you. 💐
Well what an admission from a GP, B12again! At least he sounds willing to discuss things with you rather than shut you down. Hope things get easier with the new guidelines - I think we're all waiting with bated breath!
Well definitely had pins and needles in feet and hands, though not loss of sensation or actual pain. It is improving, probably more like an inner tremor or buzz now. I'm guessing by your name that it's an issue for you?
Yes, I'm mightily relieved at the moment. I don't think I'll ever reach your level of B12 related knowledge, but your posts have helped a lot so thanks.
I now focus on understanding treatment as the bioscience work to date has yet to lead to any improvement in treatment which is more typical than some seem to understand.
fantastic Myoldcat that is such a leap forward for you …. Hoping that your doctor can spread his prescribing and knowledge to other medical professionals ….. it’s definitely a win …
Yes a personal win, but like you I hope the next time my GP sees someone in the same situation he's not thinking "every 3 months"!! He has the PA website details and said he would take a look. I did tell him I felt there was a wave of underdiagnosed B12 deficiency on its way.... and that's just from everyone I've been talking to 🤣!! Ha ha but seriously, with the current spotlight on menopause I feel it could be a great platform for greater B12 awareness 🤞🤞
Yes, I thought it was good to see a piece on B12D, but a very atypical sufferer and no mention of PA as far as I remember? Still, every little helps. Just hope the manufacturers are ramping up production so all those 'hypochondriac' people 'demanding' B12 can be provided for...🤣!
If one is willing and able to self inject it just makes sense doesn't it? Saves medical professionals' time and NHS money. And gives patients flexibility and autonomy. Ah wait, I see the problem there...😆
How wonderful to hear a GP open to listening to a patient and their individual needs!! That is all it takes for a positive pathway for much improvement and healing. Best of luck with your future progress.
Isn't that how GPs used to be? And as you say, it's all it takes really; they have the tools and can find the research. It's training, perspective and patient overwelm that get in the way.
I know! I've always been well served by our local surgery. Although the old guard of original GPs has mostly retired it is a training surgery, so hopefully they've passed some of the traditional listening and thinking skills on to the newer generation.
You are so fortunate to find not one but two knowledgeable and helpful doctors! 🥳🥳
That is as it should be. So much is known about pernicious anaemia, it’s tragic that so many of us are made to jump through hoops for nothing. But your story is really encouraging.
I had to pay for one of them which I've never done before, but it wasn't extortionate and was money very well spent. I think it also helped take some of the decision off my GP's shoulders!
I’ve never come across this term before: Autoimmune Negative Pernicious Anaemia. Is that another way of saying ‘functional B12 deficiency’ or ‘Paradoxical B12 deficiency’ do you know?
No, I don't think it is. I hadn't heard of paradoxical and just looked it up - it seems to be the same or similar to functional and may also relate to a B2 deficiency causing elevated but inactive B12 (so thanks for that). The functionals can have serum at all sorts of strange levels. Generally in my understanding PA more usually has low B12 (or lowish, with all the usual caveats about the inaccuracy of testing and the problems of supplementation affecting results) and the autoimmune negative bit means that the consultant was ok to diagnose PA without a positive anti-intrinsic factor antibody test. Cheers
I suspect I do have the autoimmune version - given a strong family history - but the IF antibody test was negative as it is for many others. So maybe a diagnosis of "the test isn't fit for purpose but it doesn't seem to be anything else"...!!
Thank you for sharing that lovely story. It illustrates what can be achieved when we acquire enough knowledge to self-advocate. If it encourages just one person to do the same …
Great news Myoldcat , well done! Wondering how you are feeling now, are you seeing any improvement? I think we have spoken before as our B12 journeys started at the same time in December
Yes we have spoken Bertiepuss - a fellow cat person? I am noticing improvement in the various tingles and twitches, and bad cramping in deep abdominal muscles has virtually disappeared- thankfully, as that was bad! But I have some fun reversing out symptoms to replace them - acute stabbing pain in shins and ankles which reduces me to muttering bad words and stamping around, and I think a recent gastritis attack was reversing out too. At least I hope so 🤞. Brain is definitely getting clearer, although physical energy is still lagging behind. A busy day needs a very lazy day's recovery. I've done very little for 2 weeks due to gastritis and have actually felt the benefit.
I hope you are noticing some improvement? It's a long road but it's good to pay attention and flag the positive changes x
Yes, fellow cat lover here, how did you guess 🤣. I have to tell you something funny - when we first communicated, I read your name as Moldy Cat. I thought, oh, this person must think cat's are moldy, I wonder why, maybe they don't like cats. It took several times of seeing your name come up in the forum before I realised I'd got it so wrong 🤦😁
Sounds like you've been on a bit of a journey, but glad to see some things are changing for the better😊 Keep the faith that positive things will continue. I read another members post recently who it took many, many months before she really got better, so there is hope. A swear word here and there I believe is well called for along the way!
I can't say I'm seeing improvements yet, but I've also been treating my severe iron deficiency so overlapping problems there. And, I actually don't know if I'm B12 deficiency or not. My bloods were at a good level before starting to SI but I had been supplementing so it's hard to say if I was ever truly deficient or not. I didn't do any of the other tests as it was expensive and seem to have problems with accuracy too. For me this is all a bit of an experiment in the hopes of some benefit being gained. I do wonder if I have other things going on too, my investigations continue on this. But, I will also try to keep positive that over time things will hopefully get better.
Ha ha! My old cat Leo was the inspiration for my name. He was not moldy...😂 Sounds like you are juggling lots of different issues Bertiepuss, but at least supplementing with B12 can't cause any problems and hopefully will bring benefits even though as you say it may be longer term. Slow and steady seems the way!
Aw, Leo, bless 😻 I think you can work out the name of my cat! Thank you for your kind words of encouragement. Wishing you all the best with your continued journey of improvement. It's always nice to hear on the forum when people gets some wins, even if small, it certainly gives a message of hope so thank you for sharing your journey and look forward to your next instalment 😊
There certainly seem to be fewer wins than the other thing, I'm just extremely grateful to be able to post one of them and hope to hear more, especially once the new NICE guidelines eventually appear.
Of course, PM away 😊 Although don't get your hopes up for any real enlightenment! Just managing expectations - as you've learnt, I have a reading and comprehension problem 😁
Informed from everyone on this forum via me... but also open to hearing the information. Otherwise I feel I may have been slowly spiralling down awaiting an injection in 3 months!
Wow! That is one good GP - hang on to him/her! Must be rarer that a unicorn! Am so pleased for you - it is heartening to know there are some GPs out there willing to listen and act accordingly. 😍
I do think we should get together a list of helpful doctors private and NHS to sign post each other too. The consultant you saw sounds brill. Where abouts in the country are you?
I'm in Hertfordshire... I don't think it's allowed to name names on the forum - is that correct, moderators? - but happy to respond in a private chat message.
Thanks. a bit to far north for me. I dont think we are allowed to name names publically. Thyroid uk have a list that can be emailed to you if you are looking for a good doctor. Maybe we could start one for PAS.
Just caught your reply above - yes, would be useful to have the information in a private message please (my reason is that my son and family live in Hertfordshire and at some point I might move closer to them (from West Wales), so an empathetic GP would be most welcome!
wow that is amazing! I get one ampoule a month which has become hopeless . I need 2 a week since covid 18 months ago. I have had autoimmune gastritis /PA for 12 years but never got the right treatment at the beginning. So you are so lucky and well done.
So sorry to hear you didn't get good initial treatment Gillsie54. I do feel lucky, which isn't the ideal when it comes to health outcomes! It's interesting that you mention Covid increased your needs - it was as i was recovering from original Covid in 2020 that I started to notice what l described as "fizzy legs", but I now think were the first neurological symptoms of B12 deficiency. But I just put it down to a weird post-Covid leftover. Seems to have been a trigger for lots of people. Wishing you well.
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