Well, I had a terrible day yesterday. My GP informs me - again - that most of us imagine our symptoms and any improvements we feel after injections. He was quite rude about this society and told me to remember that people on here are just nutritionists and not doctors/scientists. He was also very rude about people with fibromyalgia (which includes several of my friends), saying their symptoms are often psychological, which is why painkillers don’t work well for them. He then went on to suggest my fatigue was due to my mental health symptoms of anxiety and occasional depression. I am sooooooo fed up with that old chestnut. When I said I was considering self injecting he gave me a look of shock/horror and said it would be very dangerous but declined to tell me how, specifically. I’m now a bit nervous of doing so.
He did agree to give me a blood test after six weeks into this 12 week cycle - which is why I don’t want to self inject in case I skew the figures. My initial levels last Sept were 170 for B12 and 5.5 for folates. I feel I will have to live this half life - sleeping 12/14 hrs a day - for ever. There is no chance of changing GP or even changing within the practice.
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Dragonwalker
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I am so sorry to hear how your GP has treated you. Isnt 170 below the B12 range even allowing for lab variation in ranges? If so he should be treating you -infact in many countries they treat you under 500!!
I was in a simular postion though my B12 was not under the range but low in range. I had loads of neurological symptoms and was struggling to do basic things like get out of a chair, walk up and down stairs etc...I couldnt get the jabs from the GP, they referred me to a neurologist with a 6 month wait so decided to self inject. Its actually really easy -nothing to be frightened of. I used the subcutaneous approach and this has worked extrmely well.. Am loads better 6 months later, my GP was amazed and delighted. Neurologist recommended b12 jabs when I was finally seen. Still waiting for the GP surgery to sort the script for self injecting b12.
Make sure you take a basic b complex with folate if you start self injecting every other day. High dose b12 can deplete folate.
There are no countries where people are routinely treated because their levels are less than 500. You will find some websites that suggest levels below 500 mean you will get treatment in Japan. But you'll find websites, that look official, saying that you will get treated if your levels are below 500 to 550 in Europe - clancymedicalgroup.com/vita...
I have chronic pancreatitis which interferes with my digestion and absorption of vitamins and minerals by a lot. I had to check my B12 test results several times as sometimes they are up to 1000.00 but I still have B12 injections once a month. Some labs use a different criteria for results so be aware. With my lab normal is >200. I'm sorry your doctor is such a jerk. Seems they get their panties in a bunch when you research for yourself.
200 sounds a bare minimum doesn’t it? Many doctors do seem threatened by any patient research. However a good a GP is he/she is only a ‘general’ practitioner and can't be expected to be an expert in every field.
I’m truly sorry to hear of your experience with an ignorant and stubborn GP . You can try printing out the leaflets about how you should be treated ( on the PAS site . Also information that you can download for Health Professionals. ). But as he has such a poor opinion of the PAS , I don’t think he will take any notice . It sounds as though he will put them straight in the rubbish bin . I can only suggest self-injecting , which is easy and cheap. Come back here for help if you wish to go down that route . I self -inject . It has honestly changed my life! Very best wishes .
Thank you Wedgewood. I’m afriad you’re right. He probably binned the printouts I left him yesterday. I’ve just lost my confidence in believing my sympyoms are due to B12 defiency and not something else. I did suffer from ME a number of years ago and the exhaustion is similar. I’m not too bothered about self injecting and have looked at the Utube videos. Just a little concerned about hitting my femoral nerve - or worse still my femoral artery.
If the neurologist wants you to have injections it should be on your notes. The ignorant G.p can't ignore that. That's how I got my injections restarted. I pointed out the letter that was on my notes. G.of hadn't read it.
I haven’t seen a neurologist. My GP was fairly happy to start loading injections on the basis of my presenting symptoms - poor balance and staggering. He was fairly quick on that - it’s just the continuing treatment he is being stubborn about.
Oh sorry it was Wavylines that saw a neurologist. At least the initial treatment in good time. How annoying that the good start is not continuing with the treatment you need. I was told today by G.p they can be given in a way the individual needs them. I was astonished as same G.p who said to try tablets. Wish I'd been able to record the telephone conversation. Perhaps he's done some reading or astonished that I am improving back on them by another Gp after the letter from neurologist shown. Is there another doctor you could see? Hope you get what you need soon. Keep us posted
I'm sorry to read this about your GP I had been going to dr for over 3yrs before I was finally diagnosed and because it was new GP and she didn't like the colour I was which was nearly yellow at the time I had memory loss,bowel problems,tired would sleep most off the time and depression,since been diagnosed and on b12 injections every 4wks the dr tried every 8wks but I was back to being not well breathless,faint feeling so it's every 4wk and I'm feeling loads better that's been nearly 5 months so it does take time..don't give up go back and see another GP and report the one you saw
I too thought I had M.E. (mainly because it was suggested by an osteopath - GP at the time said "stress") but now I realise it was B12 deficiency.
M.E. or CFS is likely to be misdiagnosed either because B12 isn't tested, or because the B12 tests are inaccurate. Or perhaps recent use of a multivitamin skews test results - might raise levels a bit but won't affect long term symptoms. Is the conclusion I've reached. I may be wrong. I don't think usually many other conditions are ruled out when people are diagnosed with CFS though. Testing for Lyme disease for one.
Me too!! I was told that I did have fatigue but it was psychological. I was told by a Consultant who put me into a full body MRI that the same symptoms he thought was MS (no MS showed) now made no medical sense.
I was sent to a shrink who said I was very intelligent and asked me why on earth I was there. At the time I couldn't walk and only agreed to go to shut the GP up and to try and get practical support at home with my child. She was taking care if me and the house at 11yrs old. I had limited standing tolerance and the social workers refused to help us as I was a "loving mother and she wasn't at risk"
10yrs later I manage to get to a Lupus professor whom I told I think it was Lupus all along. Every symptom I described he said was "consistent with Lupus"
Don't lose faith in yourself. Your body is talking to you.
I was scared to SI. I try to remember that these nurses etc all had to learn. I am as capable to learn. Now I SI every few days. I just take my time and make sure I have plenty of time, no distractions.
Now I walk faster, am less fatigued overall. My thinking is clearer. My memory has improved. It feels like the mists are clearing. It is subtle but it is very real
I was diagnosed with CFS in 1997 after chickenpox and suffered from it until about 2004. I still get short relapses so I wonder what the exact relationship is between these various auto immune diseases.
Hey Dragonwalker. You must have the same GP as me. I have had strikingly similar conversations over the last two years. Don’t let it get to you. There is no excuse for such ignorance with someone in his position. I appreciate it is very hard to fight your corner when you feel physically so unwell. Take courage from the many people on here who struggle on and support and advise each other. Self injecting scared me too, but it’s the best thing I ever did. Get all the advice you can on here. There is no need to worry. I am interested that you say you had ME a few years ago. When this all started for me 9 years ago the first thing was a sudden bout of utter depression, followed by CFS. I literally would sleep for days. On good days I could put a load of washing in. No idea what happened with the rest of my days. Very strange thing. I was vitamin D deficient. After that I had IBS. It was another five years before any doctor even considered PA. I still don’t have a diagnosis but the treatment works. You may find the same. A competent GP would need to rule out other causes of your symptoms via various tests and scans in the first instance anyway. So if he says he doesn’t agree with you about what this is, then he should be doing that. If he isn’t, and he isn’t referring you to someone who might know more, then he is not doing anything for you and you should complain.
My God, I hope not. I was diagnosed with IBS in 1986 or 7. It hasn’t bothered me continually all those years but flared up badly last summer, two months before I started getting neurological symptoms and was diagnosed low B12.
Just a quick message to say that I am 52 and have been diagnosed (although there were a lot of unanswered questions ) with pernicious amaemia a few years ago .Like many others in this Forum at some point I was very disappointed of how i was taken and treated by most of te doctors i have seen over the years (one of them once told me "to get a grip is not a cancer !"-this is when my B12 was very borderline 212 or similar and I was feeling very tired and low )....
Anyway ...I started buying B12 injections when travelling to Europe -so cheap ,no prescription ,no appoitments needed...did a very little research to make sure tha I cannot overdose or damage and started self-injecting...My question to you is :"How often do you do it ?Have you told your GP that this is what you chose to do and the reasons for that?"
Ii have tried to mention it to my GP but she gave me such a look that I did not dare to progress explainig and asking her...So I am here on my own ....not sure how often to sel-inject though ,not sure if I am allowed and will be able to askto get levels done just to check where I am with everything.
I generally self-inject when i start feeling tired and start crying over very small things as these are and have always been my main symptoms (apart from the very first time when I was first diagnosed and had pins and needles in my feet and hands)
Would love to hearwhat others do.Apology if this topic has been discussed here many times.And thank you .
I self-inject every week . Yes I told my GP , who warned me that I could over dose and it would be toxic . I asked for proof of this but none was forthcoming ( because there is none ) I do not go the the GP Any more for my 3 monthly injection . It’s so easy and cheap to self inject. I am still registered at the surgery as having Pernicious Anaemia . I certainly don’t allow myself to get to the crying stage . I don’t want to start experiencing any of those awful symptoms ever again . Think how cheap self-injecting is .How convenient — no sitting in a waiting room full of sick people who could be spreading illnesses . Cheaper than going out for a cup of coffee ! Marvellous!
he really needs to go on a course on patient care - if you don't treat people with respect they won't respect you ... and if you are too insecure to contemplate the possibility that you might be wrong then there really is no hope for you.
The PAS is not an organisation of nutritionists - far from it. It also funds scientific research into PA and its treatment and there are many doctors who are members and supporters.
Sorry that there isn't any possibility of moving to another GP whose interpersonal skills leave less to be desired, let alone his knowledge of B12.
I was angry too that he was so rude about this organisation which is so helpful. I’ve known him wrong on several counts over the last six years so quite happy to on this one.
So sorry to hear this, it is awful when doctors dont listen to their patients. After all you and you alone know how you feel and for that you dont need to be medically trained. Such a pity your doctor is so self confident that he knows it all. Wish you luck and hope either he gets a grip on himself or you find a way. I have been very lucky and really feel for those who are not so lucky. Thankfully there are people on here who will help you if you decide to self inject. Seems like the only way for you to feel well. Good luck and I will keep you in mind and wish for better things for you xx
Know what you mean but if you don’t feel good whatever age you are then trust what you feel and do what is right for you. Good luck and let me know how you are doing xx
I prefer to write letters to GPs. In UK letters to GP are supposed to be filed with medical records so are not supposed to be binned....
If you put extracts from UK B12 documents into a letter to GP then that info should be filed. Won't guarantee GP will read it but should guarantee it's in your medical records.
Have you ever got a complete copy of your medical records? Not just a copy of online summary some GP surgeries offer access to a copy of all paper records eg letters from specialists etc
Best piece of advice I ever got was to get copies of all my blood test results.
On more than one occasion I was told results were fine/normal but when I got copies I found abnormal and borderline results.
UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms get better (could mean weeks even months of every other day jabs) then a jab every 2 months.
BSH Cobalamin guidelines indicate that above pattern of treatment for B12 deficiency WITH neuro symptoms applies whatever the cause of B12 deficiency even diet.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines.
I gave my GPs a copy of above book.
"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".
There may be copies of these available from your local library service.
If yes to neuro symptoms have you been referred to
1) A neurologist
2) A haematologist
NICE CKS link in this post advises that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Has your GP done this?
This is the sort of doctor, and there are many of them, that have come to believe themselves godlike, and any patient presenting a malady outside of their belief system is to be blamed for their symptoms, as they are surely a hypochondriac.
Sorry to hear your gp has such an unhelpful attitude, its so hard to see a light at the end of the tunnel when the person who is supposed to help has that opinion! Let's also remember that he is no expert or specialist! The pa society will certainly know more than him and is full of useful suggestions.
I would insist of having your bloods tested before and after your injection to see what your levels are. You can try and fight your corner that way. But as others have said, self injecting is really not as scary as it seems.
Absolutely shocking, if he was my doctor I would have no hesitation in making a formal complaint. He is way of the mark and needs to educate himself. I feel so sad for you when I compare how wonderful my Dr is. What country do you live in Dragonwalker? X
I had similar with GP, printed out loads, filled in PDF with flow chart regarding B12 that clearly stated I needed starting on injections. GP told me they had discussed with haematologist, as I insisted they spoke to specialist, who said no requirement. I started self injecting & feel like a new person.
Yes nearly fainted after first one, as worked myself up, but everyone gets easier. It always stings a bit but put a bit of pressure on it when you pull the needle out & it soon settles.
For me it’s been a game changer after years of feeling I never got enough sleep, increasing brain fog, increasing anxiety, slight hand tremors occ etc etc!
I hear what you are saying! To self inject without a Drs say-so feels so abnormal... But then, the thing that sings out to me from this website having discovered it about 2 weeks ago, is the level of anxiety that everyone suffering from this condition seems to feel. It shouts itself out from nearly every post I read. And that, for me has been of great consolation, because that is exactly how I feel, and probably why SI makes me feel bad.
I too am fighting the NHS, but luckily I spend a lot of my time here in Switzerland, my GP here listened, questioned, and then prescribed B12 for me to SI with. What a difference!
I’m so sorry you feel a bit junkie-ish about injecting because I feel a bit that way myself. I’ve disobeyed stupid doctors before but never to the point of injecting myself. I just have to convince myself I know my body better than he does. I’m not a vindictive person but I’m getting to the point of agreeing with a few on here that he needs to get the deficiency himself and then he’d understand. Mind you, he’s such a stubborn mule he’d probably not give himself enough!
I wish! after 2 weeks of every other day injections I am not sure I am seeing much improvement, other than a slight mood lift, must be the slowest rush on record!
Thanks for the injecting tip. I’ve given myself sub cutaneous blood thinner injections in the stomach after surgery, and my partner, so shouldn’t be nervous. Needle is twice as long is all!!
I had a similar experience on Friday at my meds review with someone I had not seen before she wanted to do another blood test to see what my levels were but I said there wasn't much point after treatment had started , came home feeling worse than when I went its so frustrating , its like banging your head against a wall as my mother used to say.So glad I started to SI 2 years ago. Hope you have a good day today
You are not alone when it comes to GPs. I'm border line so I don't count for treatment until I am low and then the GP doesn't understand the loading phase. I went private to a health and cosmetic clinic to start with to get b12 IM. After 6 week loading then once a month (3 months) I came off it and on month 2 I had really bad symptoms again. Now I order online in bulk. And found once a week is the right dose for me. I can't believe the GP wouldnt treat me I was in soooo much stomach pain and total depression, fatigue. I had become lactose intolerant but if I have 1 injection a week I can eat cheese, cream and have milk in my tea again - being normal.
A couple of things you have low B12 and have had ME which can recur. I was eventually diagnosed with ME after 15 years of worsening ill-health and recouring bouts of severe ME. I recently read, on the NHS web-site, about treatment based on symptoms, not levels . My GP still refused as my level was 300 - I’ve been taking vit B complex.
I’ve decided to self-inject, in my tummy, as worried about muscle - I got a nurse friend to do the first one. I did a 1 week loading dose and now 2 times a week for 2 months then reassess, as suggested on ME/CFS web-site I follow. I’m just onto week 4 and I am much improved mentally, not as fatigued, tingling in feet and hands improved and on the injection nights, I sleep soundly. I’m quietly hoping B12 will give me my life back but Id be happy with even a 1% improvement . I followed advice on supplies, self injecting etc from this site. Thanks for all the information and support this group provides .
I am new to this group so hope you don'g mind me commenting on your post but l think your GP and mine must be related. I have has PA for over 32 years - when l was diagnosed l was told by a bitch of a nurse it was my fault and at 18 didn't know any different so l just got on with all this years and tried hard not to let it get in my way (easier said than done I know). Now to present day my symptoms can not be ignored no matter how hard l try. I get my injections every 12 weeks but find that after 6 - 8 weeks I am more tired than normal but can't sleep, have aches and pains that don't go away with ibuprofen so at the end of November with pains in my thighs and upper arms (I had flue about a month before but the aches hadn't stopped or gone away) and she said "Your depressed". I know l am not depressed (yes l was getting emotional but that was having to put up with the pain day and night and l think everyone would feel that way if they were suffering) but l did get her to run some blood tests which came back clear. I managed to get my injection 5 days early in December (but did get told off because it wasn't due but nurse rang the GP and after much discussion he did agree but told me not to come early again). Not due until 11th March and l have pains in my arm and my left thumb is numb and feels like someone keeps pulling a plaster off it really quickly. I am afraid to go back because l get the impression they are not interested so l just don't know what to do.
Sorry for the long post and thank you for listening and reading.
Without neuro symptoms- 6 loading jabs over 2 weeks then a jab every 2 or 3 months.
Does GP know BNF guidance changed recently? Used to say jab every 3 months
With neuro symptoms - a B12 loading jab every other day for as long as symptoms continue to get better then jab every 2 months.
If you're in UK and have/ or had neuro symptoms, my understanding is that you should be on second treatment pattern. See BNF, NICE CKS and BSH links in my first post.
Have you considered joining and talking to PAS? Details in my first post.
That must have been awful for you CraftyKit. At 18 I would probably have believed it was my fault too. I’ve already had the comments from friends about having been vegetarian for over 40 years. They knew it would come to no good one day! I fit most of the criteria for being prone to this so no surprises. I guess the main one is age. I’m 73.
Thank you for your reply. I too am a vegetarian and always have been (never liked the taste of meat) but l was always healthy as a child and even now with the injections l am getting all the right vitamins and my levels are good (dietitian told me this just last year and she was surprised when l told her l have never eaten meat).
Many years ago my youngest son made a comment about doctors, he would be about 14 at the time, he reckoned the human body to be a chemical, electrical and mechanical machine, is essence the same as a motor car and mechanics know everything about motor cars so it just shows how useless doctors are when there are so many things the cannot fix. Not altogether true, but is some cases a useful attitude to have about them. (It was not long after his older brother had died following a motor cycle accident.)
When I was on a Dale Carnegie course in Human Relations and Public Speaking they actually got us speaking out about the one subject everyone of us the the worlds leading expert on, which is yourself. No one knows you like you do and certainly not an unqualified human mechanic in the unique machine called you.
There is only two doctors I have ever known who have always been correct in what they have said about me or diagnosed. One is a good old friend, now retired and the other cured me when no other doctor, or whatever grade, had a clue what was the problem. All of the others, without exception have at some time or other been wrong; I usually allow them two failures, then never bother them again. (One of them, who was a real nice guy with a fantastic beside manner, managed to misdiagnose me as having Multiple Sclerosis when it was a spondylosis, causing a couple of years of problems then later diagnosed me as Asthmatic when it was something cured overnight by a surgeon 8 years later.) The current favourite has been wrong once and is on notice.
Personally I take the view, right or wrong, that if more frequent injections of Hydroxocobalamin ease my peripheral neuropathy then that is what I will have, there is no way I am going to sit twitching and itching with burning toes every evening when an injection every few days will relieve it. Nor will I suffer tinnitus when the same treatment deals with that. I know it works and I am in charge of the tools to make it work. It is my body and I will do as I want with it and not blame anyone else for the consequences. And all I have to do it to sit quiet on the edge of my bed, set up the syringe, snap open the ampoule, draw up the beautiful clear carmine liquid, swap for a thinner needle then gently slide it into that outer third of my mid thigh and slowly depress the plunger to put the medicine where it will do the most good. I timed it just a couple of days ago and it takes just 3 minutes from gathering the components to chucking the waste into the bin. Then a quick rub and massage of the thigh and swing into bed for a good night's sleep. I have now done this 70 times in the past 20 months and no problems. Me and the GP just don't discuss it because his boss doesn't agree with doing it - I keep hoping he gets B12 deficiency.
I know this makes it sound easy to Self Inject and that very first time you do it you will be shaking like the proverbial leaf, but a pause and a quick talking to yourself and you feel a whole different person afterwards, one of the rare group who self inject and not for a fix.
One of the other things I got from the Dale Carnegie course, apart than being able to stand up and bore the pants off any group who are daft enough to listen, is that if you can do it once, you can do it a second time and it you can do it a second time you can make a habit of it.
I too wish my GP would get it just so they know how it feels and just then maybe they will be more understanding. Although, one of the nurses told me that they had it but l am not sure she has PA.
Thanks for all that advice. I’m sure, in six months time I will be a seasoned injector! Anything is better than the weakness, pins and needles and, worst of all, the brain fog. One day I will write up all the stupid foggy things I do. Like going to bed and leaving my front door open!
My experience of malpractice says to me - formal complaint to the surgery manager with a report to the CQC. This should also help you, if later you need to sue for medical negligence.
That is a step too far. If you are still alive then be thankful and go to a different one. It is a small profession and they meet up regularly, it doesn't do to have a bad name with them - they have the prescription pad.
That was how I used to think. Sadly, in my job, I see too much medical negligence and I don’t see it improving, unless there are sanctions and repercussions for not listening to the patient and believing them. Talk to the CQC and they will tell you that one of the most important things a GP can do is believe the patient.
I can get complaints against me with very serious sanctions against me personally, if I get things wrong. It’s a very stressful job but it makes you listen, understand and believe the client. Sometimes you have to be straight and explain that the expectations are unrealistic but, you have to back this up with firm evidence, not opinion and conjecture.
My GP has obviously been to some sort of training on listening skills (I’m a trained counsellor). He leans in, tilts his head, has a sympathetic look on his face, doesn’t rush you. Then completely ignores what you’ve said and does his own thing.
This was something my son and I considered however as he is a rather fine lawyer and advised against, for a variety of reasons, we didn't. The practice did accept they had not actually helped me and offered to acquire the funding for any treatment I could find to solve the problem as they had none in mind themselves. Using friends and acquaintances in and around the profession we eventually hit upon the right route and ultimately it led to very effective surgery. It would be easy to say that had that route been found earlier I would have been cured earlier but that isn't the case as had we found the solution it would, at the earlier date, have been serious major surgery resulting in lengthy recuperation and scaring which I would have been reluctant to undergo. During the wait the laparoscopic techniques and facilities were being developed and the surgeon who performed it perfecting his skills. The results were remarkable, instant and remain so, with little or no scarring evident.
Medicine isn't and exact science despite all of the sophisticated tests and reports they have these days. It is still one of the arts, and some are better at it than others.
The CAB link in one of my posts, has info on making NHS complaints.
Not sure I'd recommend PALS (Patient Advice and Liaison Service) as people I have spoken to, who wanted to make complaints, didn't find them very helpful.
Thanks both. I may do this - or self inject and just leave him to stew in his own juice. I found out today that my GP is the only one in our three-town area who refuses to change the three month rule in the light of test results. Oh - and my practice manager is the GP’s sister! 😀
That has to me the definition of 'Tough SxxT', Dragonwalker.
Absolutely! And no opportunity to change GP here. Technically you can. I’ve tried, but no other surgery will take someone changing doctors if there are people new to the area who don’t yet have one. I’m on my own with this one. So glad a helpful, well informed group like this exists.
The Specialist Practice nurse I had to see when they discovered I was JUST diabetic told me she had no time for this forum and didn't think much of Martin Hooper's books. She also reckoned you only have to use half of the ampoule as that is enough. It is hardly surprising the GP's are stymied.
I am in the US and dealing with this too. My b-12 is normal at 313, but symptomatic . My TSH is also normal but I have thyroid symptoms also. 3 years I have been exhausted, chronic migraines, cold fingers and feet. I am about to lose my business as I can’t muster up enough energy to go to work some days.
It's a shame that your GP is so misinformed. It makes me cross. Try and stay positive (which I know isn't that easy) You're doing the right thing to wait until after your doctor tests you before you self inject. He needs a real result. Over time your symptoms- if like me- may change and largely improve so stay positive about this, look after yourself, sleep plenty, pay attention to your body and eat properly and over time your half life will get better. Don't despair!
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NHS GPs and COVID-19: Refusal of maintenance B12 injections for suffering patients. 
GPs refusing to give B12 injections
It's all in our heads! 
I have ALL of the symptoms of PA and it is ruining my life. My GPs won't look further.
Why am I not getting better?
