Doctors refused any more B12 injections after 5 years

[Saraha90]

My previous doctor who was dealing with B12 has recently gone on maternity leave and my file has been passed to another doctor. I have been on injections for 5 years and when I first got put on them I was told I would be on them for life as it wasnt down to my diet. This new doctor has now said I should have only been on the injections for 6 months so he wanted me to have a blood test to see if I still needed the injections. I went for the blood test and after they struggled to get any blood I was called and told that i needed to go back as the cells had died before testing. I have since had a second blood test which has not come back yet but today I have received a letter from the doctor to say that my b12 level was above 1500ng/L. The second blood test was a specialist test to look at my red blood cells. My symptoms have not been considered as well as the second lot of bloods and because the level is now above average (which it would be after 5 years of injections) I have now been denied any more treatment and told to control it by diet, even when it is in my notes that it is not down to diet! Any advice?

[Gambit62 Administrator]

I'm really sorry that you are having to battle with such stupidity. My exact thoughts are x-rated

The first thing would be to formally right to the practice (GP with copy to practice administrator) requesting that your injections be reinstated in line with current guidelines published by the BCSH and NICE as your original deficiency was identified as an absorption problem not a dietary problem.

You should also point out that current BCSH guidelines (which came into effect in 2014) clearly state that testing of serum B12 levels is not required after loading shots, meaning that treatment should not be based on serum B12 levels post loading shots.

I would also recommend that, if you have not already joined the PAS, that you do so and contact them as they may be able to intervene on your behalf.

pernicious-anaemia-society....

pernicious-anaemia-society....

[Saraha90 in reply to Gambit62]

Thank you for your response! I am so annoyed about what has gone on! Not had a problem with the injections for the last 5 years then a new doctor takes over and thinks he knows better! I was going to get a copy of my notes regarding B12 and then send a complaint to my doctors along with research regarding B12 highlighting previous notes about not being diet related. I was basically told I was too young to be on injections for the rest of my life as I'm only 28. I was ignored when told him of symptoms I get close to when injection is due and that these symptoms disappear after the injection. I also explained that the blood tests would come back with high levels as I have been on b12 injections which keep the level high! I felt like I knew more than he did. I plan to contact the society to see if they can help in anyway too. I have seen lots of people going through the same situation and makes me mad how they can just decide to stop medication! Mine was stopped and I wasnt even told about it until I went to pick up the prescription and it wasnt there. It was only when I phoned to question where the injections were I got told it had been cancelled with no notice, no appointment before hand in order to come to the decision! I was then given a telephone appointment to discuss so he has never met me but still thinks I'm fine without! If only we could let them just see how it feels for just a short period and see how they feel with no medication. That's the thing I find most about PA unless you have It then you have no idea how it affects you! I struggle to make social plans as I usually only just make it through a work day. People then think I dont wan't to be sociable when I would love to be able to go out but I just cant manage it.

[deniseinmilden in reply to Saraha90]

You have my full sympathy and have beautifully written down the whole issue and I had a similar experience (I now self inject).

You definitely know a lot more than he does and my polite version is he should be investigated and stripped of his powers as a Dr - and especially his wages! My less polite thoughts are not for here!!! 😁 😁

I wish you every strength and luck. You could try B12 sublingual sprays or tablets to help you stop your levels dropping too far while you get your jabs reinstated. They only do this to you when you are starting to feel rough, don't they!

[Saraha90 in reply to deniseinmilden]

Thank you! Yes I have tried the sprays and over counter tablets, patches.... everything that says it may help I have tried but they dont really help much. I was told by the first doctor that sorted it out that tablets would not help me as it was an absorption problem and my body couldn't process it properly because trust me I did not want injections to start off with as I'm terrified of needles. So I asked if there was anything else that would help and got told no!

[deniseinmilden in reply to Saraha90]

I quite agree - there's nothing like the injections if you need them - I just hoped something might stop you getting worse until you could get your jabs reinstated.

Wishing you the best of luck!

[Hidden]

This seems to be the way things are going with B12 deficiencies, the new doctors are reading blood counts and rubbing their hands with glee at being able to reduce the surgery costs by stopping yet another sufferer having excessive unneeded injections. Job done, spare cash in the surgery budget. Now let's have a look at someone with diabetes as there is a bounty on sorting those out.

Fanciful idea? I very much doubt it.

Those of us who solve our B12 problems with self sourced, funded and administered injections see it has a very cheap solution to an otherwise irritating, debilitating and painful chronic condition. But we are buying of medication on an almost wholesale market where, including delivery charges, it costs less that 70 pence a shot, add in the syringe, needles and bits and pieces it is still less than £1. I did come across a list of pharmacy dispensing charges to the NHS a few weeks ago which had Hydroxocobalamin at £16.99 a go, it didn't say if this was the 5 ampoule pack but I am assuming it is. If you add on the need for a nurse appointment to administer the drug then that starts to look more like a valuable saving on tight budgets. If the nurse and surgery time allocation is £25 and the the ampoule is £4 then the saving is around £140/year for even the 12 week injection schedule. If that is projected across the number of patients with the condition in any average practice then it is getting to be a significant cost and time saving, just by stopping something which can be defined as unnecessary because the blessed NUMBERS are right. No need for time consuming examinations of symptoms, the blood results say you don't need injections anymore, you must be imagining it, or it is something else. It would be a very brave junior doctor who put someone with sore feet onto an injection schedule of every 2 weeks, thereby increasing the spend by £1400 a year when the alternative, as indicated by the Sacred Numbers is to reduce it by £140. Looked at like this the current trend starts to make sense, PA or B12 deficiency is no longer fashionable or trendy, that is diabetes, PA is easily solved with a 2 monthly injection, so no need to look further.

Perhaps what needs to be done is to get the professors and lecturers on side in the medical schools so that instead of B12 deficiency being one of the minor matters they learn a little about but something just as insidious and deadly as Diabetes which is worthy of a little more research.

In the meantime, whilst we still have the customs union, our magic elixir is available to us from Germany and the kit from Medisave at a cost of about £80 for a 2 year supply if you are needing 2 weekly refills. (If the mooring ropes of our island are severed then we might have to think again. High speed boat runs into channel ports with half a million contraband 1ml ampoules would be a major drugs bust.)

[Saraha90 in reply to Hidden]

The most annoying thing is they keep bringing my age up. I keep getting told I am too young to be on the injections for the rest of my life. They see the numbers on the b12 serum test which came back off the scale and see that I have been magically cured! If I was cured then why do I still have symptoms like tiredness, brain fogs, pins and needles (mainly down spine) and pain in my hands. They are now trying to say this may be caused by another condition but refuse to say what it may be or do anything about it. I'm told to deal with it and to come back if I get any worse. So I'm expected at 28 to have no social life and just work and sleep. I think your 100% right about them trying to save money by stopping treatment. I wish I wasnt so bad with needles then I could self inject but cant bring myself to inject myself. I'm one of these people that has to look away while it's done 😂

[Hidden in reply to Saraha90]

My daughter was about your age when she was diagnosed with Pernicious Anemia and was treated with 12 weekly injections until fairly recently, now she self injects with the surgery prescribing the ampoules as fitting appointments into a busy working mother's schedule was getting too difficult. She was diagnosed using the Schillings Test and they do not check her levels as they know it would be irrelevant. She is now 51 and most times she is a power house, having also had to cope with a husband who had brain matter removed following and industrial injury. She was getting really badly affected when her injection was due so doing it herself has been a real boon.

It is a great pity you do not feel able to do it to yourself. I can understand your reluctance and can assure you every one of us who does do it was very trepidatious the first time we were doing it all alone. It is really surprising how very simple it is to do and of course you are then in total command of your condition, no longer relying on the misguided opinion of the numbskull quack who has taken you off your medication, nor any of the other medical makeweights likely to be following him. You can't be as bad as my sister-in-law though as she has to go to the surgery out of hours as she makes such a fuss about it and will only let one particular practice nurse do the deed. Watch a few of the Youtube videos and see how easy it is for them, it might be a way of de-sensitising yourself to watching injections and then I am sure this forum with ably support you as you begin the route to taking control.

Stuff the quack, DIY.

[Saraha90 in reply to Hidden]

Mine doctors are making out like you have to be above a certain age to be able to get PA. I was around 23 when I was first diagnosed and no fuss was made about it then.

Wow your daughter has had it pretty tough going. I struggle to look after myself sometimes let alone anyone else!

I'm no where near as bad as I was but I just cant watch injections being done either videos or in person otherwise I'm on the floor! 😂

[Hidden in reply to Saraha90]

That's a pity Saraha, as it is such a simple and effective solution to a problem which shouldn't be happening.

[Cherylclaire Forum Support]

I had no idea that there was any such thing as B12 deficiency three or four years ago. I now feel that if I hadn't done my research and learnt about this condition, I would have believed everything that I was told:

I've got B12 deficiency

I've got Functional B12 deficiency

I've got depression

I've got IBS (irritable bowel syndrome)

I might have SIBO (small intestine bacterial overgrowth) or IBS

It's definitely not Coeliac disease

1 injection every 3 months/ 2 months/ 1 month/ twice a week/ certainly no more than 1 every 8 weeks is sufficient

I've got depression

B12 is toxic

B12 is carcinogenic

B12 is highly addictive

and once:

I clearly have B12 deficiency, I'm doing the right thing by self-injecting every other day,and it will take time

Well hallelujah !

He was right. He was an ENT consultant, who had seen enough mouths and throats over the years to know exactly what this is. Or perhaps, being Indian, he had treated vegan monks in the past. Who knows ? When I was beginning to lose hope, he kept me going. I am improving slowly, and beginning to work out what makes me a bit better/ a lot worse, and not get disheartened.

I believe that my GP was right: I had B12 deficiency, that became Functional B12 deficiency later, which caused me to need more injections than the NHS is prepared to consider.

I'm not better, but better than I was: living proof that B12 is neither toxic nor addictive. Just necessary for my wellbeing.

How can any medical professional deny you the opportunity to be as well as you are able to be ? Especially when it is going against the medical advice and successful long-term treatment from an absent colleague !

[ellj]

Hi Sahara, could you find a friend willing to inject you? Someone you trust obviously. B12 is not a drug, it is harmlessly a vitamin. You need this treatment and will become very ill without it. If you are anywhere near a Bupa BMI or other private hospital you may possibly be able to get a nurse to inject usinh your own supplies. I used to work at a BMI private hospital and the charge was £25. A lot of money but if it is your only way worth every penny.

I do hope you find a workable solution.