I have just been for my usual injection after 10 weeks and 2 days and it has been refused because it's not 12 weeks since the last one.I have had injections every 10 weeks for 18 years since I was diagnosed with pernicious anaemia. I was told at the start the injections were due every 10 to 12 weeks so I always went after 10.
The last few years I have been challenged every time as to why I'm there after 10 weeks but they've always given the injection when I tell them that I've always done this.
Today the nurse went to ask a doctor who refused and said I could have a review with a doctor possibly on Monday to discuss it and the nurse suggested they might seek advice from a haematologist.
If anything I would like my injections at 8 weeks. I'm definitely not happy waiting to 12 weeks. I'm so tired!
I have found the link to NICE which says injections should be every 2 to 3 months and I will show that to the doctor if I manage to get this review appointment on Monday (it's ring at 8 a.m. and hope for an appointment). My question is whether there is any other "official" link I can add to this to get them to take note.
I am a very reasonable and placid person but I fear I will be labelled as difficult or belligerent.
When I asked a doctor recently about increasing frequency she said she was worried about toxicity and labelled me as "angry" despite the fact that I'm softly spoken and always polite. I've read enough to know B12 is not toxic and that B12 serum levels shouldn't be retested once on treatment.
What can I do to ensure my injections are kept at least at 10 weekly and preferably ay 8 weeks?
Many thanks in advance to anyone who can advise.
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Suesue246
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Thank you. It sort of helps to know that there are other people this is happening to. Although of course I wish it wasn't happening to anyone, maybe something will eventually be done about the treatment of pernicious anaemia because of the scale of individuals affected.I found an article printed last month in the BMJ which I will print and take to the g.p.
Because I get very tired I can forget what I've read but I've saved the link.
I do not suffer anywhere near as much as many people on here which I presume is because I was originally diagnosed promptly due to tiredness and family history.
My previous g.l. said I knew more about P.A than she did but sadly she retired.
Reading between the lines IMO it will be a miracle if you manage to persuade your GP that you need more frequent injections. Much less stress to start SI. I know it isn't ideal but the stress you will put yourself through battling with your GP isn't good for you. I go out of my way now to avoid stress. Mind you when I was still B12D it was a different matter - I was so aggressive.
Thank you. My surgery is generally regarded as a very good one.
A few years ago my daughter was misdiagnosed there repeatedly for a completely different issue and finally went privately through work and needed extensive surgery. She wrote a letter of complaint to the surgery which resulted in the entire staff being trained in her condition. I'm not exactly hopeful but I also think it's a case of guessing which g.p. in the practice might be open to listening.
Thank you. I would rather try sublingual than self injecting at the moment.It may just be that my low ferritin is the cause of my increased tiredness and that after supplements in a few more weeks I may see a difference in my energy levels.
Fingers crossed the g.p. listens and that the iron supplements work. If not in the New Year I will really need a plan of action.
Sublingual works for me. But I don't use it sublingually because B12 molecules can't pass through the buccal (tongue ) membranes. When you use sublingual B12 it isn't absorbed under the tongue - it is swallowed and passively absorbed in the gut.
This is because 'to pass across a biological membrane unassisted a molecule needs to be relatively small and lipophilic. The B12 molecule is both large and hydrophilic. If that weren’t enough, human saliva contains a protein - haptocorrin (HC) - that binds to the B12 molecule. This makes it much larger, so that there is no way it can passively pass across the buccal membranes.'
. . . so, ... practically N⛔ passive absorption thru' the 'buccal membranes' then ??!
I - & perhaps others? - will be pleased to have a citation for this info, ... as it seems to be contradicting the commonly accepted views ( - of passive, limited but finite absorption thru' mucosal ( - & other?) membranes ( - which may be misguided ??!).
AtB,
Sid 😐
Sat 16 Dec 2023, . . . as we head towards the winter solstice once more . . .
I dilute the B12 liquid in water and drink it instead of using it sublingually. My previous posts outline my protocol and I don't want to bore people by repeating it. If you're interested in how to do it I can PM you.
If your ferritin's low you should request a full iron panel and post your results here. An iron supplement should help, especially if taken EOD with vitamin C, but it will take a long time and your iron stores may not get high enough, as was the case with me after years of supplementation.
With PA, it's likely you have other deficiencies as absorption is the main issue. Check Vitamin D and folate levels too.
Thank you. I don't necessarily think I have neurological symptoms. I think I was diagnosed promptly with only tiredness as a symptom 18 years ago, because I had a family history of pernicious anaemia I asked for tests. Originally it was low B12 and positive antibodies to gastric parietal cells. Years later I asked for the antibodies for intrinsic factor to be rechecked and this second time they came back positive. My symptoms are tiredness, digestive issues of heartburn and reflux. I have tested with zero stomach acid. (Several gastroscopies over the years not showing anything of much significance). I also have upper back ache ( had a scan showing not too much) and other muscle and joint aches and some hair loss. I have congestion related to my reflux.
I'm not sure if my backache is relayed to P.A. so I don't necessarily think I need very frequent injections but I don't want them going over 10 weeks. My current tiredness could be because of my low ferritin which is being addressed. I'm going to take the printouts eith me to the g.p. with key parts highlighted.
I had this issue, and the same response as "it's addictive or toxic"
With the labelling, do not worry about it, I have had the same when asking questions or feel upset and I am the same as you.
It's just notes that is it. They will be forgotten over time.
You can write to the practice manager of the GP surgery and complain. Give them your evidence from the NICE guidelines as well with your letter.
I would also recommend seeing a Endocrinologist they specialise in b12 and hormoans.
When I had this difficult situation withy GP I could only get 12 and a half weeks. They would not budge on it so I have my injection and then halfway through I do my own injection. If I don't do this I become really ill and I can't function.
I hope you get what you need with your b12, it really is a fight with the GPS with this.
Maybe taking along a copy or sending in a copy of this link/paper which says the symptoms and clinical picture is most important and that b12 is not toxic might help you feel more confident in explaining your position
I'm sorry you are having to battle this, it shouldn't be this way, there is enough to contend with. I had a lovely gp and she let me try monthly jabs but after she retired there was an 'audit' at the practice and I was moved to two-monthly, even though I protested. I saw a neurologist for neuropathy and she then got the practice to change me to 3 monthly. I wrote 7 letters in all over time, but to no avail. I was already self-injecting but felt I should be on the correct gp regime as I have pernicious anaemia. It is like banging your head against a brick wall. Perhaps you will self-inject, it's not so bad, but I write letters anyway because I don't like them being so ignorant. xx
Thank you. In the 1970s to 1990s my dad had his injections for P.A. every 4 weeks and even then always knew when the next one was due as he got more tired. The medical profession has largely gone backwards in the treatment of P.A.
Hi Sue, can I suggest you check up on the most recent Nice Guidelines, I think they say if you have PA the injections should be every 8 weeks or more often if symptoms still persist. Good luck
I’m currently facing the same battle. I’ve been going every 11 weeks rather than 12 since I was diagnosed earlier this year and the nurse always asks me why am I a week early and I explain my symptoms get particular worse the few weeks before my next injection is due. I currently awaiting a doctor to speak to me about getting them every 10 weeks but I’ve still had no response to a form I’ve uploaded to my doctor surgery to speak to someone. I went up to the reception desk and she said unfortunately they won’t be able to get a doctor to speak to me before my next injection is due. So this time round I have to wait the 12 weeks which I’ve never done before and that really worries me
I’m currently a final year uni student in the depth of exam season!! I’m so worried my symptoms, specially tiredness, is going to impact me working.
I completely understand your frustration and it’s so upsetting we have to fight so hard for something that we need xx
I'm so sorry to hear this. Have you had other blood tests such as D3 and ferritin, deficiencies in which could also be influencing your tiredness? I'm currently on iron tablets as my levels came back so low, so I'm hoping in time that will help. However I've no idea if I will be able to absorb them effectively as I have zero stomach acid.
I realise my symptoms are nowhere near as bad as what many people live with.
I hope someone at your surgery sees sense. Maybe you could also take in a copy of the BMJ report Lady Bothwell mentioned above. Good luck
This stinks! The key words that come out are worry, stress, frightened, gone backwards etc, and they and more appear time and time again in this forum and likely in many other forums too. The utter ignorance and even hubris of many medical ‘professionals’ beggars belief, ultimately the way they treat patients complaining of the horrible symptoms of B12D can only be described as inhumane and quite the opposite of what is needed. I know there are those professionals who are sympathetic and treat their patients well and have taken time to look at the data that is now available. The excellent book by Dr Chandy, ‘Vitamin B12 Deficiency in Clinical Practice’, (Available on Amazon for £6.16) should be mandatory reading in every medical school, hospital and GP’s surgery. I have a GP who is starting to listen to me (maybe from intrigue - I was born in a place called Speke in Liverpool and he knows this, his name is Dr Speke 😏) but not there yet although he has agreed to put me on a jab every eight weeks. I also told him SI EOD. He is waiting for the next guidelines to come out at the end of March to discuss further, hopefully.
When I started my journey several month ago, and after my loading doses from which my life returned somewhat to normality but was given no more injections afterwards and the symptoms returned, a GP I saw got advice from an haematologist consultant who said that “it is well documented a patient can have a feeling of wellbeing after the treatment.” Translation….placebo effect or I’m on a high! These people are going to get a £20,000 pay rise potentially. As to the mention that SI maybe hiding the extent of the problem, I’m sorry, I have no intention of going back to those awful symptoms.
Worth checking your ICBs (Integrated Care Board) B12 deficiency guidelines (Health Board in Wales/Scotland). Some of these local guidelines differ from NICE guidance.
Try an online search, search forum posts or submit FOI to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Are you a PAS member?
PAS membership is separate to membership of this forum. They may be able to suggest useful info to pass to GP. PAS website has some very useful leaflets.
Might be worth discussing with GP that under treatment of B12 deficiency increases the risk of developing permanent neuro symptoms. In severe cases the spinal cord may be affected.
Perhaps GP would like to read next article...
PAS article about SACD, sub acute combined degeneration of the spinal cord
Honestly DIY. It's not difficult. I get my GP one every 2 months. I actually SI every 4 days and am thinking of going to every other day, to see if I can stop having floppy days, like today, after a 'busy' day.
If you have any illness, or stress your system needs more.
-The man who founded the PAS (which society now has a data base of 8,000 members) has written three books on PA, been awarded an OBE for his work he has on the topic (PAS is now doing original research with scientists). He recently wrote (if I recall correctly) that he takes two injections a week. He had severe neurological symptoms from the disease when diagnosed.
-Firstly, I assume you have been medically diagnosed with PA with severe symptoms of the nervous system. I am not a doctor, but a PA sufferer with nervous system involvement (viz. psychiatric manifestation of PA when I was eventually diagnosed).
-The medical protocols in Australia for B12 treatment (which follow UK fairly closely) specify that you initially start off with B12 injections every other day for 2 weeks and then one injection every 2 months IF YOU ARE SYMPTOM FREE. What is absent from the text but is implied, is that if you are NOT symptom free you should carry on with the injections until you are symptom free. And if that means 2 per week then that is what is required. Your body does not lie. All the protocols seem to be carefully worded (if you read between the lines) to ensure that you treat ‘according to symptoms’ (meaning ‘nervous system’ symptoms). Most publications / product disclosure information (leaflet) contained in the box containing the B12 injection are carefully worded - they seem to skirt around the issue of frequency when alluding to symptomatic deficiency. The trick is to note the wording. I'm looking at one as I type for Neo-B12 (Hydroxocobalamin Chrolide (Chloride is simply the salt buffer and type of salt I am told should not matter). It has two treatment protocols in the manufacturer’s product information.
(1) Treatment for Addison Pernicious Aneamia (and other macrocytic aneamias) “WITHOUT Neurological Involvement”.
(i) ‘Initial’ doses …a,b and
(ii) ‘Maintenance’ doses ....c,d
(2) Treatment for Addison Pernicious Aneamia (and other macrocytic aneamias) “WITH Neurological Involvement”.
(i) Initial doses .. a,b and
(ii) Maintenance doses ...c, d.
Note the 'WITHOUT' and 'WITH'. It seems a distinction is made between whether:
(i) your nervous system has been impacted (ie. 'nerve' symptoms exist) or
(ii) has not impacted (meaning no 'nerve' or symptoms).
More relevantly whether 'demyelination' has occurred (ie. myelin sheath of nerves have been damaged). The papers I have read suggest that the extent of injury (whether the impact is temporary or permanent), depends on how long the B12 deficiency (accompanied by nerve symptoms) was left diagnosed. Two years has been touted as the tipping point for some irreversible nerve damage.
In the case of ADVANZ PHARMA in Australia the product information pamphlet dance goes as follows:
(i) In the case of PA, if your nervous system has been affected, the starting does is 1000 micrograms every alternate day, then 10000 micrograms every two months, PROVIDED YOUR CONDITIONS IS IMPROVING.
(ii) In the case of smokers blindness or Lebers optic atrophy, the usual starting dose is at 1,000 micrograms daily for 2 weeks, the twice weekly PROVIDED YOU ARE RESPONDING WELL. Then you doctor may give you a 1000 microgram injection once a month.
A patient is going to have a hard time working though this with a doctor. Most of them hate a patient challenging them. It seems to me that what these protocols are saying, without explicitly saying so, is that doctors should treat according to symptoms.
Perhaps you could keep a spreadsheet of your symptoms. I am thinking of monitoring and recording sleep (my sleep quality deteriorates markedly if I delay an injection by 1 day) and other symptoms. You could easily create/gather 500 data points clearly demonstrating your response to injections in a data set – and provide that to your doctor. And then keep recording to create thousands of data points - and then hand that over to PAS . If enough of us do that, we can create a data base that the medical researchers cannot ignore. Potentially PAS could seek advice & provide guidelines as to the type of recordings ("research design") required in the spreadsheet?
-Best of luck. Most important takeaway point is in first paragraph (regarding Martyn Hooper OBE) me thinks. If you have symptoms pointing to involvement of your nervous symptoms (ie. ‘demyelination’ - which is very hard to prove or disprove) that are alleviated by injections, this is the point to make to the doctors.
Thank you for your detailed reply. I did reply to it in detail myself but somehow I managed to reply to myself instead of you so it's elsewhere in the thread!
After five days of no b12 in back to crawling around the house bumping into things. With it I have a life. UK doctors haven’t got a clue. Just order it from a reputable German pharmacy and self manage it. It’s the only way sadly.
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