To cut a long story short, I questioned the doctor on why my husband isn't receiving loading doses. (Levels 142, range 170-900) She said that it states every three months in the BNF! So I told her, no, it doesn't with neurological symptoms. So she proceeded to bring up the BNF on her computer and asked whether I had a medical degree in a rather sarky manner, so I quipped, no, I have a BNF! She didn't think that pins and needles account as neurological symptoms, so no, just one injection every three months and no loading doses!
I was going to ask what she would define as neurological symptoms, but got a sharp looking sideways glance from my husband, so decided to keep my trap shut! She obviously wasn't going to back down (she has the medical degree, you know).
Anyway we should be greatful he is actually getting one, after reading the horror stories on here over the years! Bought supplies, so I will start with more after the nurse has given him one (hopefully no reaction) I found it liberating buying them, as I will top up myself mid three month, as my husband didn't really understand before how deliberating this deficiency really is.
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BNF link above now says a B12 jab every 2 to 3 months which refers to ongoing maintenance treatment.
If she looks at next section in BNF link it says that adults should have..
6 B12 jabs over 2 weeks followed by a jab every 2 or 3 months for B12 deficiency without neuro symptoms
The 6 B12 jabs over 2 weeks are loading doses.
And the third section in BNF link says
A B12 jab every other day for as long as symptoms continue to improve then a jab every 2 months for those WITH neuro symptoms.
Have you considered writing a polite, brief letter to your GP outlining your concerns?
Have you read this link about writing letters to GPs about B12 deficiency? It has letter templates including one for under treatment of B12 deficiency with neuro symptoms.
"She didn't think that pins and needles account as neurological symptoms,"
A neurologist told me that these were neurological symptoms.
Referrals
Has he seen a neurologist?
I used to write brief letters to GP to request referrals and included evidence eg symptoms, family history, test results, extracts from UK B12 documents etc that supported request. GP does not have to agree though.
NICE CKS link lower down this post recommends that GPs should seek advice from a haematologist for patients with b12 deficiency WITH neuro symptoms.
What other neuro symptoms does he have?
May be worth listing every neuro symptom and giving GP a copy or perhaps putting list into letter to GP.
Some of the neuro symptoms I experienced at my worst (before I started B12 treatment) were
tingling,
pins and needles in many parts of my body including spinal cord,
insect crawling sensations (formication),
intermittent numb spots,
tremors,
brainfog,
constant migraine,
word finding difficulties (nominal aphasia)
memory problems
balance problems
clumsiness
proprioception problems - my awareness of where my body was in space was affected
tinnitus
restless legs syndrome
confusion
There are many other possible neuro symptoms that B12 deficiency can cause.
I was never rude but had doctors snap, shout and put pressure on me to leave GP practice because I was persistent and kept questioning.
If I had stopped questioning and challenging (politely) I truly believe that I would now be showing signs of dementia and spinal damage.
I had to resort to self treatment when I had tried and failed to get NHS B12 treatment.
There may be a PAS local support group close to you if you're in UK. These groups may be a source of info about helpful GPs etc. You would need to be a PAS member to attend meetings.
Oh yes, but ignored the frequency, she brought up the online version, she just had it her mind that I was wrong, that's it, one injection! I knew eventually he would become B12 deficient, he's been taking (prescribed) high dose ppi's for years! Now stopped, even though I told him ages ago that they should be taken short term, by the local cancer hospital as he wasn't absorbing lots of minerals. Calcium, potassium, phosphate all had to be infused! We live and learn! Thanks for the info, he might actually read it now it concerns him!
I know it's soooo frustrating! I have made a mental note to myself not EVER to see her again. What's worse is my husband is terminally ill and the time we have left together is precious, I don't want him asleep on the couch 18+ hours a day! We want to do fun things with our teenagers while he is still able to and we can't! Took matters into my own hands anyway and ordered all we need online. So there, she can stick that up her......BNF!
I suppose we could, although sometimes it's better the devil you know. I have never seen this doctor before today, we didn't have any female docs at our branch of the practice for a while (which is pretty poor, thinking about it). I got my loading doses a few years ago, no problems. Unfortunately we couldn't pick and choose the doctor today as it was an appointment only released this morning. It's something to think about, though, as we do have to use the car to get there and there is a surgery in walking distance. we moved here a couple of years ago. Thanks.
I did the ‘print B12 info out, complete questionnaires, provide flow chart of treatment, BNF info’ with a letter...GP had not read it! Went with a few issues granted but got advised as just in range and ‘no neurological symptoms’ I did not require treatment.
I am not a doctor but work in a field where I know neurological symptoms and assess for them...how can they claim you have non if not asking what symptoms you have, not assessing you or reading the symptoms you’ve ticked....I just said fine, if you say so and I’ll treat myself!!! It’s been the best decision I’ve made....I feel in control, symptoms much improved and no constant battle with NHS services.... cheaper than a coffee at about 65p a shot!
My husband couldn't believe how cheap they are online and that fact he was denied loading doses. He is finally getting the hang of 'lets help ourselves get better!' instead of banging heads against a brick wall, having seeing myself go through it the last couple of years!
Wishing you all the best in your journeys to optimising your own health!
Working alongside doctors over the last few years I’ve been able to see how you cannot be an expert in everything yet we expect GPs to be. The shame is when provided with the evidence / info they still don’t always know what to do for the best or are governed by policies / local guidance over which they have little or no say!
Thank you, totally agree, they can't be experts in all fields and there are some truly excellent doctors at our surgery, but obviously one who chooses not to listen to symptoms from a patient, the computer says no! But in a way I do believe costs comes into, as in nurses appointments, must have some bearing on decisions. Oh well, here comes SI!
I have had maybe one or two doctors in my life who didn't have an ego problem. I understand all things medical quite naturally. I can't pain or play a piano but I would say I am a natural at this. I just see things. I can join the dots. I diagnosed my own Lupus after seeing countless Consultants . Lupus professor confirmed.
Needless to say the Doctors do not like me asking knowledgeable questions. It makes me scared as they are making a choice not to learn.
Ironically the one who learned the most from me taught GPs himself and is now no longer a GP. I used to explain which drugs I can use "off licence", explain interactions and why some may seem to be appropriate bit were not.He used to listen to everything I researched and would write for advice and guidance . Then he would come back and quite literally giggle when he explained I was right.
I also learned from him and he would propose I research a treatment and come back to him.
It was a remarkable relationship. I have complex autoimmune issues and he knew I was trying to help him help me. He has no God complex.
Sadly as soon as he left the one they assigned me promptly let it be known there would be no more nonsense with them or the others like there was with that Senior partner. I would take or leave what they suggested.
It does seem ridiculous that this boon of more frequent injections costs so little bought direct from a pharmaceutical supplier in Germany but I don't think we are ever going to be in that fortunate situation from UK suppliers as I understand that injectable medicines can only be supplied in UK on prescription. I would take an act of Parliament to change that. I am sure the reluctance to prescribe more frequent injections is cost driven. To cover the GP's bum there has to be a specialist diagnosis of peripheral neuropathy which costs the surgery and then, although the prescription costs would be down to the patient, they would have to cost the doing it, unless it is SI, and the need to find time for that. Then how would they prescribe the medication, how do they prescribe it for those who do get frequent shots, because that in itself would be far more expensive than getting it from Germany at £8.80 per item, unless you are exempt.
All we have to hope is this damned nonsense permeating Westminster doesn't throw a spanner into our works. Going over to Germany to collect some would run out rather expensive.
I am prescribed B12 injections fortnightly (not enough, I inject twice a week). I pick up four ampoules at a time. Still more expensive than Germany, except I am exempt (over 60).
Since the change in the BNF recommendations (from every three months to every two to three months) you don't need a diagnosis of peripheral neuropathy. And you never did need a specialist diagnosis. Any GP can test for numbness in toes or balance problems.
Once they have diagnosed peripheral neuropathy, then they should send you to a specialist. There are 80 possible causes of PN and a GP can't be expected to tell what the cause is.
I have just come back from the Podiatrist who has confirmed the Practice Nurse's suspicions that I have this. What really gets up my nose is I have been talking about this, in some detail for over 2 years and nothing has happened because the specialist has not replied to their request. Personally I just went ahead and got the kit to do the job and been doing it for the past 15 months, it may be too late though to recover anything as there is good circulation in my feet but no sensation. I don't think it is the junior salaried partners at the practice who are in error it is the arrogant dinosaur with the chip on his shoulder who is now in charge. He is about as much use as a plastic turkey at Christmas and I wouldn't even let him treat the next door neighbour's cat. Unless he has got a set of numbers he does nothing.
I have enough ampoules, with the 5 more doled out next July to keep me going until well into 2020 and then my German mates will take delivery and forward them on as a private package if I can't get them any other way.
Yes, that's what I'm hoping for, keeping us both cheerful! It's sad that it comes to ordering meds online, as the doctor thinks levels are 'borderline'! Hopefully things will improve with SI, thanks x
I always thought that loading doses were the initial method in finding out how much and how regular the course injections need to be, I had my post injection blood tests yesterday and I am waiting for the surgery to contact me with the results and see what programme they are going to implement, as it stands I have had no bad moments since the loading doses and side effects of the injections culminated in a migraine and some mouth ulcers, but not long lasting.
No, I don't think we have PA, I think the deficiency is caused by taking PPIs. I took them for a couple of years for acid reflux. My husband has taken them for twenty years +, for the same reason. Doctors see to hand them out willy nilly, not realising the consequences. They should only be taken for a short period, not years.
If he is having injections then PPI's are fine to take as the B12 then bypasses the normal digestion route.
I also see that you say he is terminally ill. I am sorry to hear that. I dont know what his illness is but you may need to do some more research into how often to inject if its cancer. Cancers have B12 receptors and you could end up feeding it if that makes sense. You can still inject B12 but not quite as often
The Christie told him to stop the ppi's, as he had many mineral deficiencies, not sure if they are to blame, though. He has lung cancer, so the outlook is rather bleak, but I did wonder about 'feeding' the cancer with B12, it had crossed my mind. I think his quality of life at the moment is poor, sleeping most of that day so I will give him loading doses and go from there. It's so difficult to know what is best, thanks for your input, it really is appreciated x
This experience is so familiar. I respect doctors, but I am paying them as well. There has to be some give and take. I’ve had doctors raise their voice and insult my sanity when I insisted they were missing something. I’m a retired female vet - my responses were a touch salty. Other times I took any info of value, paid my bill and walked. I feel like I’d be dead now if I hadn’t persevered.
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