I've been a member here for a number of years but it's been a while since I last logged in. I want to scream in frustration, really!
I was 22 when I got PA, and self-injected (monthly) for almost all that time, with the support of my Practice Nurse.) Then NICE changed it to 3 monthly! I tried to cope on quarterly injections and for a long while I managed,
They have never, ever allowed me 2 monthly, even though I have always had neurological symptoms. Then I got an unexplained DVT in my left leg, I became extremely fatigued, over Christmas I scalded all my left arm, burnt several fingers, and then, just could not stay awake!
So, after arming myself with info from here and the PA website, I tackled my GP about my B12. She agreed to monthly injections for 3 months with a continuation of that if there was an improvement (there was, a huge one). Unfortunately, after 3 months, she seemed to hve forgotten all bout it, so I booked an appointment with her and she simply said No, it would be 3 monthly!
So, I handed her a letter I had reedy, and went through it verbally. I told her I was withdrawing my treatment for my PA and I would purchase the syringes, needles and ampoules myself and take it monthly. She considered this and then said if that was my wish that was fine. But she would prefer to prescribe my ampoules just to be sure they were safe.
And that was it, I’ve been trundling long on that basis quite happily, until now!
Last week I noticed there was a note on my online prescriptions that my B12 should be issued 3 monthly ONLY. I mentioned it to the nurse yesterday and she booked me a telephone appt with the doc today.
I got nowhere, he mentioned the placebo effect, my age, and the fact that I had diabetes which was far more important than a vitamin deficiency. Really? In this day and age, we are still getting such ignorance? I gave him the web address of the B12 deficiency website and asked him to please red it, and in particular, watch at least the first 5 minutes of the video at the bottom of the home page. He said he would but I doubt he will.
I said well look, I don’t need all this grief from someone who clearly does not understand B12 deficiency and PA. are you going to prescribe the ampoules or not? That’s all I want to know. He said ‘Absolutely, you do need it, and I will prescribe it for 3 monthly.’
So, I just said, You might as well take it off my prescriptions, 3 monthly is useless, so I will need to buy it. I won’t be ordering it from the surgery. Thank you for your time and I sincerely hope that you, nor any of your loved ones ever get PA, because it will be a reel eye opener if you do!
I put the phone down and just sobbed in frustration. Even my own husband doesn’t completely get it. Although when I start dropping things and being generally clumsy, he always asks me if my jab is due!!
More importantly, the ‘diabetes is more important’ comment left me speechless. He didn’t seem aware that Metformin can deplete B12. Oh wow!
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auntieb
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Thanks for your support, I wrote couple of years ago but they don't seem aware of that. That doctor has left the practice now, so who knows what she did with it. I'm just so over it, I'll just go head and buy them. I won't order them on prescription, let him think I'm not taking them. he even said I was taking too much, overdosing. So he didn't even know that it's not possible. Any your body doesn't need it just gets rid of
I’m so sorry for the frustrations you’re facing but am glad you’re able to order your own B12 and si. Your story is repeated by others far too frequently on this forum.
I just wanted to add that there seems to be some sort of wholesale cost cutting exercise at GP practices affecting prescriptions generally. I see an eye specialist for glaucoma and they tell my GP to prescribe drops for that and also moisturising eye drops. Apparently the latter can no longer be prescribed by GPs unless there’s a co-existing condition like glaucoma. So I get them put on my repeat prescription and the next time I need them they’ve been removed. Again and again it happens. Very irritating and time wasting to have to write in or make an appointment each time but at least I get them when I insist, unlike B12 which is denied.
Thank you Jan. I knew everyone here would understand. Simply because we've all been through the same thing. Sigh! And I completely agree with your cost-cutting theory. I really could say a lot about that, but I'll save that rant for another day, lol
I currently have an ulcer on the back of my left calf. I actually got it while the District Nurses were coming to dress a wound on my left leg. I kept telling them my right leg was sore but they did nothing. Then suddenly, a hole appeared, that was 2 years ago, and I still have it and it's complete agony as I have diabetic neuropathy. I have the same struggle getting the painkillers I need for that. It's ridiculous. I really don't understand why they make life so difficult for people who are already at a low point.
You’ve summed up a lot of my feelings right now. I have one more week until I get a b12 injection after over 6 months without and I’m really struggling with neuropathy symptoms, anxiety and feeling drained and irritable constantly. Not sure my partner gets it and I feel confined to follow the doctors advice even if it isn’t helping and I know I need more injections. I’m so close to telling the doctor that I’m going to buy my own stocks and self-inject but because I take anticoagulants after a DVT and a sibling with a PE, I’m scared to take things into my own hands as it could be perceived as wreckless versus thrombophilia issues. I also think my partner would think that I’d finally lost the plot. I also wonder if b12 deficiency could be part of the susceptibility to clots but it was my haematologist who detected the deficiency and didn’t report it to me for 2 years and holds it with little relevance to anything. As in your case it’s so frustrating to be bound by multiple issues especially when the health professionals just don’t seem to get it or look at the bigger picture of how b12 deficiency plays lots of roles in the body. If it helps, you’re not alone in suffering this incredible frustration!
Aww you Sweetheart, thank you for sharing what I am sure is only part of your story. I know my own story is so complex, so I'm certain yours is, if not more so. DVT is absolutely a symptom of PA for people who have neurological issues. When I got mine they were also 'foggy' about possible causes. I'm sure you would be OK if you decided to SI, B12 is water-soluble so any extra that your body doesn't need is simply expelled in the normal way. Having said that, I totally understand and empathise your fears and need to have professional guidance. If only we could get that huh xx
Even if you do not have any neuro symptoms, BNF allows for injections to be given every 2 months.
Were you given the recommended pattern of loading doses at start of your treatment?
If in UK, BNF suggests
for those without neuro symptoms....
6 loading injections over two weeks
for those WITH neuro symptoms
A loading injection every other day for as long as symptoms continue to get better.
There is no set time limit for how long the every other day loading jabs can carry on if neuro symptoms present; could be weeks even months.
If you didn't get recommended pattern of loading doses at start of treatment, you may be able to convince GP to restart loading doses especially if neuro symptoms present.
Probably best to put any query into a letter even if you've written before. In UK, letters to GPs are supposed to be filed with medical notes so are a record of issues raised.
Can be useful to have a paper trail in case there is a need for a complaint in the future.
Some UK forum members have sent copies of letters to practice managers as well as GPs.
If you have neuro symptoms, have you thought about requesting a referral to
1) neurologist
2) haematologist
There's a chance they may have a better understanding of B12 deficiency but don't expect wonders.
If GP refuses to consider referral to haematologist, you could ask them to contact a local haematologist by letter, asking for advice.
You could draw GPs attention , in any letter or conversation, to the increased risk of permanent neurological damage including damage to spinal cord if a patient with b12 deficiency is under treated.
I doubt sadly that you'll get monthly injections but I think there's a good chance of getting a jab every 2 months if you're in UK.
Some forum members keep a symptoms diary and keep a daily record of how symptoms change over time and if and when treatment is received. Can be useful evidence of improvement or deterioration in symptoms to show GP.
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which you might find helpful.
Some forum members feel their only option is to self treat. My personal opinion is that this is a last resort but I was driven to it when unable to get any B12 treatment.
Thank you Sleepybunny (love your name ) You've given loads of very good info and links. Unfortunately, I've pretty much done all of that, to no avail. I was 22 when I developed PA, I will be 66 next week, so I've lived with this for 44 years, ack! I can accept doctors/nurses who don't understand due to a lack of training. But I really thought I had done with doctors who just refused to accept it's even real. Placebo effect indeed! I purchased Martin's book last week, and yes I have considered joining PS, not so much to delve into the very useful help there, though I'm sure I will, but more to make my voice heard, try to educate people and change the way society treats people with PA and other hidden illnesses. I gave the doctor the link to B12deficiency.info today and asked if he would please look at the first page which lists all the symptoms, and particulrly the excellent video at the bottom.
I said, 'It is an hour long and I know your time is valuble, but would you please promise me you will watch at least the first 5 minutes?' Anyone who does that will get some inkling what this disease is capable of. It's scary.
I know this will kill me, 44 years of it has already left me practically immobile, overweight, constantly fatigued, and with more 'niggly' health issues than I care to even list. I'm sure that is down to simple ignorance of it's capabilities. When I got it, I don't think there was any such thing as loading injections, I was literally on deaths doorstep when I convinced my GP I needed to be in hospital.
As for the pandemic, I think it's disgusting that people are being refused their injections or that treatment is delayed because of it. Just another example that the medical profession doesn't take PA seriously. My Mum is 84 and has dementia, her 3 monthly injections, given t home by the district nurses, are never on time. Sometimes s much as 2 months late. But this contributes to her dementia. That makes me so angry
"Unfortunately, I've pretty much done all of that"
So sorry to read that you've tried hard to get them to understand PA without success.
If you have neuro symptoms and they refuse to give you injections every 2 months, have you thought about making a formal written complaint, citing the treatment info in BNF link?
Or contacting your MP?
PAS have sometimes intervened in past on behalf of PAS members struggling to get recommended treatment.
Doctors can close ranks if they feel threatened and have subtle ways of getting rid of patients they consider to be awkward. It happened to me at one practice although I was never deliberately rude to them.
I was left untreated for many years despite typical symptoms of B12 deficiency. Things were complicated by the fact that my IFA test result was negative and most of my serum b12 results were well within range.
I was told I had hypochondria, that my symptoms were psychosomatic and was diagnosed with ME/CFS/Fibro etc. I feel I lost many years of my life. In the end when facing the prospect of dementia and spinal damage if I didn't get treatment, I chose to self treat.
I now have a life that is bearable although not what I expected.
I had bad experiences with both GPs and specialists including being snapped and shouted at and had pressure put on me to leave one GP surgery....and yes, I've also had placebo effects alluded to in conversations.
From personal experience within my circle of contacts, I empathise with your mum.
Local Guidelines
Some parts of UK have local guidelines on treating B12 deficiency that differ from BNF and BSH Cobalamin and Folate Guidelines.
I suggest tracking down the local guidelines for your part of UK. It might explain GP's attitude.
Oral B12 treatment
I just hope you don't live in Gloucestershire. Their treatment guidelines now advocate oral tablets for majority of B12 deficient patients. See blog post below.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Oh Sleepybunny, I could cry for you. In many ways you describe my own experiences so I know where you are coming from. Yet you seem to be a positive person, accepting the changes forced onto your life and just getting on with it. You also do your best to educate and assist. I used to be an active person, always enjoyed the outdoors, long walks at the weekends, etc. Over the years I found I was able to do less and less and yes, I just accepted my limitations as part of getting older. Something would get dropped and new hobbies would be learned. Not such a bad thing, until the limitations stop you from actually living and make you dependent on others. My whole life has been filled with misdiagnosis: and I have born the brunt of it. I have no faith in doctors now. If I were referred for any further tests, I would not go.
I learnt a very hard life lesson when going through a period when symptoms were unbearable. I had more than 40 different symptoms affecting multiple body systems.
For me, the lesson was sometimes the only person who is going to help you is yourself.
I still wish to be really active and energetic but have to be content with a life that is much better than it was a few years ago.
The only way I cope with what happened...the misdiagnoses, the unkind doctors, the lack of support, the effects on my family etc is to try to ensure that what happened to me does not happen to others.
If I've helped just one person then I'll be happy so I think I understand your desire to educate people about B12.
It took me several years to find out the links I regularly post in replies and I wistfully think of what might have been if I'd had access to the information years ago.
I can empathise with your lack of faith in doctors as I lost trust in them years ago. I am sure though that there are good ones out there. I only met one, a neurologist, who I thought was helpful and who showed at least some understanding about b12 deficiency.
Your story mirrors mine so much,, I think I still hope for a doctor or nurse to help, but I am slowly realising that yes, it is down to just me. Unfortunately, I have had too many health problems that have impacted my mobility and capability. Only now do I know that many. if not all, are related to PA. Like you, I will have to adjust to the life I have, not the one I should have had. You will be an inspiration to me while I do that. xx
I have had several telephone consultations with neurologist and haematologist over the past few months Sleepybunny following a session with the neurologist in February. She has diagnosed peripheral neuropathy and ordered EMG study of fine nerve fibres but is adamant there is no clinical evidence or biological reason for there being any benefit from long term heavy injection of B12. She mentioned the placebo effect in the last telephone call we had a few days ago.
The haematologists, both of the ones I have talked to, are of similar opinions and the second one was of the type that ignored anything I said and made it plain it was not a discussion.
They were all concerned about an IGG reading in the blood results so have had further studies done and conclude I have MGUS. That has focussed their attentions I suspect.
As for auntieb then the last thing I would do is tell the GP she doesn’t want her prescription for her 5 pack of ampoules annually as they cannot overlook that and will review it themselves. Any new guidelines will then be applied. But I think the important aspect is that a doctor does prescribe it and she will have repeat prescription order forms if nothing else: these could well be the key for the German Pharmacies being prepared to supply to us here as we are now no longer part of the EU and will shortly not be trading under the common customs union rules. (It is just a thought.)
I too take anticoagulant Apixaban and no-one has yet suggested they conflict in any way with B12, having said that I also take metformin and no-one has raised its effect on it either.
We will have to do what we can to have what we need. The mills of God grind faster than those of the medical profession.
"but is adamant there is no clinical evidence or biological reason for there being any benefit from long term heavy injection of B12"
I've read that B12 deficiency can cause demyelination of nerves therefore it seems logical to me that long term treatment with B12 might lead to at least some remyelination and improvement in neuropathy.
I did write you a long response to your comment Sleepybunny however somehow I wiped, tapped or otherwise contacted some button or patch on the iPad screen and it ok disappeared.
There was a comment I went back to her with which a quote from the Blood magazine by a guy from a Californian University which was said the although there was no recognised biological system by which there could be a benefit there wasn’t one which said there wasn’t. Our conversation came to an end shortly after that.
I really believe it is up to us. We are the leading experts in this as we are the ones with actual experience rather than what we have read in some tome, treatise, pamphlet or back of fag packet. We need to come up with some recording method which gives measured evidence. Then the ‘professionals’ might listen to us.
Oh Dear, I never thought of that. I guess I will need to order it then, but it annoys me tht this doctor might be sat back thinking I have 'complied' I feel a letter coming on!
I took Apixaban for 6 months when I got my DVT, I think that was when I first really started to look into B12 deficiency more. No one could tell me why I had gotten DVT, and I know there isn't always a reason for things happening. But I have been back and forth to Australia several times, never a problem. Surely if I was going to get one it would have happened after a long haul flight? Not just for no reason at all. And my neurological symptoms increased dramatically after that too. Also, B12 deficiency can cause abnormal PAP smears, and just before my DVT, I had a smear test done. While I was still in the hospital with the DVT, a doctor told me I had cervical cancer. I had various tests, n internal, CT scan, an MRI scan, the gynecologist was surprised that I had had no other symptoms such as pain or bleeding. They kept putting treatment off because I was taking apixaban and eventually, after 12 months and another test, I was told the cancer had 'reversed itself'.
I'm sure that many people who have cancer wish it could do just that. I'm also pretty sure I never had it!
Well the short answer to that is, I haven't a clue! I have never even been told what my B12 and folate results are. It's only now that I have access to online services that I can see some test results.
I'm so sorry to hear of yet another incompetent, absolutely uneducated, useless doctor!
I really do feel your frustration!
Sadly, it's so familiar it's scary to think that our lives are in the hands of such incompetence!!!
Even though my Dr is understanding, he refuses to increase my injections from 3 monthly. Even when I was suffering neurological issues, it was my nurse that said I should be still having every other day & who told the Dr I needed to be referred to a Neurologist.
That was 18 months ago, & after being told I have small fibre neuropathy & self injecting every other day since, I feel the best I've felt in a long time.
My partner is the same, if I forget my injection, she knows & tells me to go inject myself.
It’s the same with my husband he tells me to stop faffing about trying to reduce the frequency of shots when I just end up suffering the symptoms again so he gently reminds me to do my injection every other day because he sees the decline when I don’t.He always says it’s like a false sense of security I get,because I feel well I then decide I can reduce the shots,because I hate doing them,but it does me no favours because it’s the wrong thing to do it’s much too early to decide this so I’m now resigned to the fact I have to do this to stay well and maybe at some stage I can reduce but definately not in the near future.xx
She knows right away & says "Go stick a needle in you for goodness sake".
It's my mood & energy levels that suffer.
You're so right about the false sense of security Thrones! Because I feel good I think I'll leave it & skip it, try & spread it out a day or two, but you know what happens when we do that!
I even said I was going to do a full week of every day injections, trouble is I forget 😁
I do really need to do every day for a week though just to see how I feel.
You know my history of how I beat my "legal" Heroin addiction, so I would have no problem whatsoever standing in front of the many doctors who believe it's addictive, telling them they don't have a clue what they're spouting on about!
Ok, you have a deal. I'll do it first & let you know 😁
I did one yesterday so I'll carry on daily till next Saturday & let you know 👍
Are you doing arms or thighs? I’ve still not used that auto injector it’s still sat in the blooming box it’s huge I’d rather just stick with the needles much as I hate them.im expecting you to be telling me next week you’ve signed up for the marathon 😂
Yes auntieb I bought it from union medico have a google.unfortunately I bought the stainless steel one and it was too awkward for me but Ritchie 1268 uses the proper one and likes it.
I found it, yay! I'm not scared of injecting. I've been SI for 44 years and I also have to inject insulin twice a day. But, my GP has stopped my Meloxicam which is n anti-inflammatory. nd the pin in my fingers and wrists is making it difficult to hold the syringe at times. So I'm thinking ahead for when I can no longer do it. Would I trust my husband to inject me? The short answer is NO, lolol
It beggers belief how ignorant GPs are over PA maybe we need it raising in the house of commons or something we can all sign. The stress of getting B12 then when you fo the worry it may stop. It really isn't worth it self inject is the way to go so long as its on your medical record you're doing this or the will feel vindicated that you are managing without it. Stay strong xx
"maybe we need it raising in the house of commons"
If all the UK forum members who were well enough contacted their MPs, that might get the issues associated with PA and B12 deficiency in general noticed.
MPs are totally disinterested even when you do write to them as I have done. You just get wishy washy letters quoting what the health dept says or the CCG. So fed up with it all myself. How we can survive this onslaught of ignorance I just do not know.
Placards and demo outside no 10 ?? - probably not allowed due to covid.
Hang in there everyone and By working together one day it will be understood and benefit those that come after.
MPs are totally disinterested even when you do write to them as I have done. You just get wishy washy letters quoting what the health dept says or the CCG. So fed up with it all myself. How we can survive this onslaught of ignorance I just do not know.
Placards and demo outside no 10 ?? - probably not allowed due to covid.
Hang in there everyone and By working together one day it will be understood and benefit those that come after.
"You just get wishy washy letters quoting what the health dept says or the CCG. So fed up with it all myself"
Agree totally Gillsie54.
I have tried to get MPs interested in the past but just can't raise the energy at the moment as it's so frustrating when they don't get a sense of the urgency of the situation.
I do think that if it was 20 people contacting an MP rather than one or two people that it could make a difference.
I wonder how many of us reading your post can relate to your experience, the level of ignorance regarding PA we encounter within the NHS is astounding. So sorry to read about the problems you are havjng and can entirely understand how you feel, have been where you are. Our treatment is very cheap and refusal to treat has dire consequences for us, so sad reading frequent posts where patients opinions are overuled and ignored and GP's react as if we are are unreleable witnesses of our own condition. I can't think of any other serious illness, cheaply treated where patients are forced to source their own treatment or risk permanent damage. Good luck.
It seems that GP's have little training on chronic illnesses that the NHS believes can be assessed and treated just on the basis of a blood test result. Patients insisting this alone is not enough enounter resistance, it's a huge problem that should urgently be investigated but continues to be ignored. For years I was given an annual B12 blood test but no treatment after anti gastric parietal anti bodies were confirmed, I think during this time I was getting PA symptoms but the annnual test confirmed I had adequate B12 and didn't need treatment. It wasn't untill around 2014 that GP's were advised the B12 blood test was unreliable but as far as I know there was no reaction to this news and no major directive was given to GP's to retest all PA patients using the more reliable tests advised or even advise them the test used for years to assess their B12 status could not be relied on. Quite scandalous when given some thought.
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) You've given loads of very good info and links. Unfortunately, I've pretty much done all of that, to no avail. I was 22 when I developed PA, I will be 66 next week, so I've lived with this for 44 years, ack! I can accept doctors/nurses who don't understand due to a lack of training. But I really thought I had done with doctors who just refused to accept it's even real. Placebo effect indeed! I purchased Martin's book last week, and yes I have considered joining PS, not so much to delve into the very useful help there, though I'm sure I will, but more to make my voice heard, try to educate people and change the way society treats people with PA and other hidden illnesses. I gave the doctor the link to B12deficiency.info today and asked if he would please look at the first page which lists all the symptoms, and particulrly the excellent video at the bottom.
What a waste of NHS Hydroxcobalamin ampoules
I'm just feeling lost and want to share
Want to hear from others with lactose intolerant 
Visit to hematologist for pernicious anemia
why am I B12 deficient?
