So I finally managed to get an appointment with the GP a few weeks ago.
I wanted her to put it in writing that I didn’t need a b12 test prior to jabs and also querying why my abnormal TSH level had been marked as normal.
Additionally I requested that my 12 weekly injections be changed to 8 weekly as I was experiencing neurological symptoms around week 9. I had documented this and the GP appeared to understand this and agreed to change to 8 weekly jabs as per Guidelines but would also refer to haematology.
all good I though but received the attached today.
I am exhausted arguing with this now and will SI between the prescribed jabs.
I can’t believe that when the options are to increase the b12 jabs from 4 per year to 6 per year or to spend the rest of my life treating the neurological conditions that may evolve. As well as the depression I had already explained kicked in at about 9 weeks.
I truly can’t believe a well informed, reasonable request can be denied.
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Jason_h123
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Reading the letter sounds like they are playing bat and ball. Not one of them are taking your symptoms into consideration. Doctor ... Haematologist ....pharmacist.
Where are the 🏀 🏀🏀🏀 going to land. I doubt very much they will be in your Court.
Really sad that the consultants are not more knowlegdeable. Not even knowing about the safety is inexcusable. And what you are asking for is according to guidelines, so how the consultant dismisses it I dont know.
additionally we are not allowed to SI anymore due to a risk of ‘gap in documentation’ …….
Every time we have SI I have passed the date, injection site and batch number as per guidelines.
Not impressed that they use the documentation argument when it suits them, I raised a written complaint 25 Aug, resent and chased weekly for 4 weeks. Escalated to NHS England who contacted the surgery and assured me I would get a response within 14 days, 14 days in and no reply so re-escalated and still no acknowledgement of my complaint. If they won’t respond to NHS England then what hope do we have ?
NHS England is central to the problem. It's about who pays for what, and justifying costs in their budget.
If its important to you then pursue it. However, if you want your sanity and can SI, do that instead.
The attitude from Drs for any request is the same, to infuriate and frustrate, to keep you hanging on, make mountains out of molehills, whilst they plead daily for more pay for ever decreasing knowledge and work.
If you want to stick it to them, threaten reporting the consultant, for not knowing about safety of b12, a vitamin for gods sake. And the GP for referring such a basic request. Bet he has no concern about dangerous antidepressants. Do a FOI and ask how many of those they prescribe. Remind them delays seriously harm your health. PERNIOUS = DEADLY.
When my GP, acting on consultant's advice, got my injections increased to three a week, nurses became suspicious/ too busy (hence received two a week)/ nervous. One nurse told me that she -quite sensibly- googled "B12 and toxicity". Then having assured herself that she was not about to kill me through overdosing, she continued to inject me happily at this frequency and saw, like everyone else who cared to notice, visible improvements !
I went home and googled the same search - the only links found were that B12 in huge amounts is used to flush out toxins ! Why ? Because safe to do so, I'm guessing !
There is no known upper limit at which b12 is harmful.
It was quite easy.
Jason_h123 : I was sent to haematologists when six months later, I got worse again. They seemed very anti-B12 : called it "toxic", "carcinogenic" and "highly addictive".
It was therefore unsurprising that they kept changing the subject when I asked where that research might be found or those conclusions documented.
Nor was it surprising when they told my GP not to give me more B12 injections than one every two months.
Nor that they had decided that my raised MMA was probably "my normal"- having tested it four times and found it to be still raised.
[My GP had previously diagnosed functional B12 deficiency based on observation of deterioration on the usual B12 regime after B12 deficiency found. She'd had (with some difficulty) managed to get my serum MMA tested and on the raised result, the testing lab had confirmed her diagnosis (renal problems having been ruled out as cause).]
Unsurprising then that the haematologists were proved wrong about where my normal MMA level would lie: after three years of frequent B12 injections, eventually sel-administered, my MMA level was found by DNA specialists to have fallen within range at the 6th time of testing.
Yay.
B12 deficiency with neurological symptoms should be treated by every other day injections until no more improvement can be gained by it - then an injection every two months. Not "until nurses get the hump or get scared", not "until the flu/covid jabs start up for winter and get priority", not "until another consultant disagrees with guidelines", not "until haematologists won't check that it isn't toxic" ... just until your nerves stop being able to repair any further, which can take a very long time, especially if they all dither !
When my GP, acting on consultant's advice, got my injections increased to three a week, nurses became suspicious/ too busy (hence received two a week)/ nervous. One nurse told me that she -quite sensibly- googled "B12 and toxicity".
Would the nurse(s) have looked up anything if the frequency had been reduced? (Which surely must have happened many times.)
I find it difficult to believe that the nurse(s) would know sufficient about B12 that they could simply accept an instruction to do fewer, but feel an urgent need check when told to do more.
But that degree of honesty was preferable to the suspicion and reluctance I was experiencing from some of the other nurses. Suspicion ?? I didn't even ask. Too ill to care.
I think functional B12 deficiency is rare. Continuing to decline despite B12 injections and a raised serum MMA level in spite of (by then) a very high serum B12 level could still have been "something else" - but if renal function tests and SIBO tests rule out both as causes, not much else likely.
Would this automatically get you frequent B12 injections ? How long for ? What would be a "maintenance" dose ? A difficult one for a GP to answer.
Luckily, my GP had had a previous case, a decade ago. She knew what to test for, how to make a diagnosis and get it confirmed by the testing lab. Even eventually found a lab that would run the test. Knew what else to rule out, too.
She told me I would get three injections a week for a while, then one a month thereafter*. She even committed to putting "severe B12 deficiency" on my doctors certificate.
The nurses gave me two injections a week - never seemed to have time to fit a third one in. The senior nurse told me she had about 3 or 4 patients with functional B12 deficiency in all. I don't think any of them got the same frequency.
This makes me wonder whether any B12 deficient patients presenting with neurological symptoms ever got EOD injections until no further improvement of their symptoms was possible. As per guidelines.
Because from the reaction I received, I doubt it.
Delay or undertreatment can mean that opportunity for improvement is lost forever. Now that really is something for a nurse to get worried about !
so, your GO sends your case to an expert in blood who then says em, maybe check with a Pharmacist ? No wonder we need to treat ourselves. My advice is to SI every 8 weeks and see how your symptoms go, adjusting as needed.
They are actually right in stating that there is no benefit in testing B12 between doses. It will almost certainly measure high even though you feel deficient. Many on here have had their injections cut following a high blood test. The PAS are researching why some sufferers are fine with 3 monthly injections and some are not but I SI weekly. What they should be doing is treating you according to your symptoms and that is what they are failing to do.
hi , i so feel it for you - i have written to doc - thanks to wonderful peeps on forum who encouraged me to write to doc- i have got telephone appt 8th nov to discuss my request- so hoping it gets granted? i hope you eventually get some common sense actions coming back to you from doc! finally, can anybody suggest what best sublingual hydroxocobalamin product to buy and what company if it allowed to say on site. asking incase i dont get 8 weekly jabs. if you get 8 weeekly jabs, can u still use sublingually and how much can u use. and, if u get 12 weekly jabs, how much can u use sublingually on top of ur 12 week injections? thanks guys!
it is very unlikely that you will ever be listened to, take matters into your own hands if you can, I self inject or you can pay for them at beauty clinics ect
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
Some links may have details that could be upsetting.
Have you talked to your GP/specialists about the increased risk of damage to spinal cord if a person with B12 deficiency does not get adequate treatment?
I'm not saying you have this type of damage, I'm not medically trained, but I wondered if mentioning it to GP/specialists in a letter/conversation might make them rethink their reluctance to give you injections every 8 weeks.
Local MP/devolved representative may be worth talking to. MP's website will have a list of dates for advice surgeries and an online contact form/tel. no.
Have a look at the values and mission statement on your ICB (Integrated care board)/Health Board website as these should include something about patient experience.
I spent many months trying to get resolution, writing emails and letters i got through 2 GPs at the surgery, a gastro consultant and then the lead gastro. I used PALS but never got a PA diagnosis despite my symptoms and positive intrinsic factor and apc- they said the ifab was only weekly positive.
A haematologist pointed to my autoimmune history and positive ifab and apc as being indicative but did not say the words, -she has PA. It is so hard when you are not well to fight, i thought I could take them on but realised they will not rock the boat or challenge decisions made by other drs, its a closed shop.
Complaining through the channels? I was told the GP has 6 months to reply to a complaint if a patient is unhappy with the response the patient must write to the GP again to say that, the GP then has another 6 months to reply. Thats a year of deterioration if you do nothing but wait on their reply. If you have gone down the GP complaint route, you cannot then go down thd NHS England route. Its all so wrong.
They eventually agreed to 2 monthly injections but still have not confirmed PA, What does it matter some may ask as long as im getting the treatment. Its the principle, its for others who dont know and just suffer thinking its their lot in life and heaven only knows what condition they may end up in and for those who cannot fight. I am sad for others , I am sorry that I could not fight any more. I wish you the best and hope you find resolution but dont look too hard in the NHS. I hope you decide to order your own and SI. Best of health to you all.
I’m quite happy to SI, and thankfully have the means to do so without any issues, both medically and financially.
One side of me says just roll over and SI and forget about it but the other side of me says sod them, let’s try and get the message through for the people that can’t battle for themselves.
I agree with you in that we could all take the selfish attitude and self inject and think F... The NHS, and get on with our own lives. Yes it will solve our problems but will not resolve a national problem.
Couldn’t agree more Jason_h123, there are so many people who lie down and just accept what the docs say, as they must be cleverer than the patient. Worrying 🤔
Wow. Jason h123, four injections a year? I could never get by with that. I have no words for this incompetence. The complete disregard for your symptoms or you is so dismissive. They can go home to their fancy homes, to their healthy life and never give you a second thought. How dare they play God like this. Thank goodness you have the ability to SI. I'm so sorry they dismissed you this way. It is just so disrespectful. We aren't getting high from b12. We simply want to be normal and be able to live and enjoy our lives. Good luck to you!!
What about the B12 health spas that are popping up everywhere, for ones daily b12 boost of energy or weight loss supplement? People don't have a problem believing that is safe. They are allowed to administer 58 Methyl injections in a 90 day period @ $20 a pop. No one is questioning their safety. Who is monitoring that? The only compliance is they can not give medical advice or claim it is a cure for anything. They had to take some kind of a level 7 injection training course. But no one is monitoring the person who is simply going too another spa for the remaining 32 injections, if they want to inject daily. The rich and famous started this fad. They made a movement about it, so there is indeed a double standard. Doctors treat it like a drug and spas treat it like candy. Something is very wrong here. I for one am going to speak up anytime i can. We CAN change this stigma by speaking up. This is BS!
Hello Jason … surely the haematology consultant should be referred to update himself with neurological / Nice guidelines ….. good luck but SI is an option while we can still buy it
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What is my next move ?
B12 neuro symptoms appear worse Advice before GP appointment please
