My partner has a b12 injection every month, now all of a sudden he can't get appointments then when you get one the nurse says you need to have it Reviewed by your doctor, he is now coming up to two months since he had his last one, he has been so Ill since new year, he has no energy, had cold after cold, I'm so worried in case he ends up being so Ill and ends up in hospital again. He has an appointment made for the 111th of this month to see him about his knee, he's been told the doctor may review it but then would need to make another appointment to have the injection, is there anywhere that he can get it done privatley every month as the doctors are getting such a nightmare and it's getting beyond the joke now. Can anyone help please???????????
Where can I get a b12 privatley - Pernicious Anaemi...
Where can I get a b12 privatley
Hi, firstly i would suggest waiting for gp review in case they want blood test done because the last thing you want is for him to have a nice high reading of b12 because he recently self medicated( in whatever form). He also needs to find out why they are not treating him monthly anymore without a consultation.
Having said that there are other options open from sourcing and self injecting to sub linguals, patches, sprays or drops, so plenty of choice.
He has had the injection every month with no problem until the last 6 months, not being able to get appointments, all the nurses have left, I can't believe it's so hard to get appointments even though he's supposed to have it done every month. I have been with his two years and I'm so worried about him, but he has been getting worse since new year. He has got an appointment 11 March to see the doctor about his bad knee, he also at the moment has swollen legs, he was told that the doctor might review it then, but will have to make another appointment to see the nurse who will do the injection. I just don't know what to do, he never lets illness get to him but he has no choice now, he just sleeps and is always so ill. He's even asked me to look Into finding a private go to do it, he'd pay to have it done he's that desperate, he says he hasn't been this bad since he collapsed and was rushed into hospital
He's doctors is in Braintree in essex
Well done - Name and shame.
where are you located - UK?
Getting injections privately in UK can be very expensive - £100+
There are other options - which include trying sublinguals - tablets or sprays, nasal sprays and skin patches which can be quite effective ... but no guarantee
You could also try injecting yourself - find someone who can show you how to do it intra-muscular or try subQ - most countries have humanitarian provisions that allow you to import essential medications that you can't get locally for personal use. - injectable B12 isn't always covered by prescription only legislation in all countries.
If you are in the UK you can source ampoules from other european countries, eg Germany - lots of reputable pharmacies and even amazon.de.
If he has PA then his injections are needed for life. If he has PA then I would suggest you contact the Pernicious Anaemia Society - you can phone them and leave a message - and they will get back to you. They are able to give you support and advice in handling your GP.
mailto:info@pasoc.org.uk
Tel : 01656 769 717
I am sorry for you and him. It is horrible and he is very lucky to have someone like you to care for him.
I know you need more help than just buying the supplies but if you look up my profile by double clicking on my name and then look up my recent post,
"My Experiences" it has lots of information on where to source supplies.
If he wants to try self injecting, as well as watching videos on YouTube, maybe you can find a local nurse who could show him/you how to do the injections if you can get the things you need. Try local pharmacists, ask in a local pub for a nurse contact maybe, try local nursing homes, or maybe Macmillan nurses.
Injections aren't difficult to do and it does mean that you aren't at the mercy of others just to keep well.
Any other questions, please come back to us. I'm not far away - just in Suffolk and there are other people in Essex near you. If you join the Facebook group, maybe you could meet up with them and they could help you too.
Good luck! x
Thank you so so much, I will have a look at your recent posts, I think this is the answer, I will also try and find out how to join the Facebook page, bless you, thank you so much, it's given me a bit of hope, I just need to do something to help him as help before he has an accident or ends up in hospital, thank you once again x
The Facebook link is in my post, along with where to source supplies.
Good luck!
He can buy them a d self inject.
I do
How do you go about this, he will be willing to do that himself, it would make his life so much easier and wouldn't have to worry about not getting appointments. Has anyone got any information on this please, oh!! Would be so grateful if any one could share it with me please!!!
Hi Wendyjanebergin
I am not medically qualified but it sounds to me like a very regrettable breakdown in the Surgery's administration.
As Marz says if P.A. is the reason your partner is getting b12 then he needs them for life as any doctor or nurse worth their salt will know without question.
Could it be that he's b12 deficient due to his diet or some other reason?
Is he vegan or vegetarian?
I rule out extreme exercise because of his knee but perhaps he's on other medication like antacids for indigestion or metformin for diabetes which can restrict absorption of the b12 in food via the stomach.
I wish you both well for the future.
P.A is the reason he has to have them. I think it's the surgery that has the problem, I can't see why they don't make him an appointment after he has his jab, so he hasn't got to worry about trying desperately to get an appointment for the next one. He works long hours as a driver. They can't make him two appointments to co inside each other so they expect him to take two days off work to get his appointments, total breakdown in the surgery. He travels around the country every day so he's away from home most of the time, I think I will have to put a complaint in, I'm just so so worried about him, I've never known him to go to bed cause he's do I'll, he's crawling in and out of bed. He's got to go till the 11th march to see the doctor about his knee, ( which I took him to hospital last year, must have been August and they said he needs to be referred by his go to get an appointment at the hospital, were 7 months or more down the line and he's still trying to get an appointment, which is now 11th, it's unbelievable) then he's got to ask his doctor if he will review his jab, then make an appointment to see the nurse in the meantime he's over due and missed 2 jabs. If anything happens to him, I shall blame it on the doctors surgery. All he wants is a jab, it takes a couple of seconds to do, can't believe this.
He doesn't take any other medication apart from pain killers for his knee. His dad had thrombosis, seeing his legs swell I hope he doesn't get it
Wow! I've been P.A. for nearly 45 years and been on cyanocobamalin b12 injections every four weeks. My doctor gives me a repeat prescription (for 5 vials) and every four or five months (which I keep) and when I have an injection at the surgery I automatically make another appointment with the nurse for 4 week time.
I remember when I first started to do this they used paper diaries and had to pencil in dates and times as they hadn't inked them in yet. Of course now, after all this time the receptionist simply looks up and starts booking my next appointment.
Perhaps my GP's practice is the exception to the rule.
I do hope you get this sorted quickly
My partner has been having them for 3-4 years now, so new to it really compared to you. You say you get a prescription for yours? How does that work? He's never been given a prescription, sorry I'm learning at the moment, trying desperately to help him
Yours sounds like a good surgery
Hi again Wendyjanebergin,
Well I'm going back to 1972 when I was first diagnosed with P.A. due to stomach surgery in 1959.
If I remember correctly I was given the first loading shots provided by the doctor and then she issued me with a repeat prescription for a pack of five vials of Cytamen (cyanocobamalin) b12 injections.
I simply request a renewal prescription every four to five months and collect them from my pharmacy taking them with me to the surgery each time I go for a pre-booked appointment with the practice nurse. As I said above I make my next appointment four weeks in advance.
It's worked like clockwork for me and to the the best of my recollection I've only "forgotten" to go for an injection twice in 44 years but even then I was quickly "fitted in" for another appointment the next day as it only takes five minutes for the jab.
Fortunately my firm was very good allowing me to "disappear" for twenty minutes every fourth Tuesday at 10.30 am.
It may well be that your partner's surgery carries a stock of b12 for him and that's why he doesn't have to get them himself.
Do you know what b12 injections he's on?
It seems strange to me that he's on monthly injections as most recently diagnosed P.A. "victims" are on hydroxocobamalin (or Neo Cytamen) with two or three months between.
I'm still on four weekly injections because when the new stuff came into use I had adverse side effects and couldn't last the 3 months and so stayed on the original Cytamen.
Well done for looking after your man and I hope you manage to resolve the problems.
Just for clarification...
Clivealive is unusual in that he is treated with cyanocobalmin, because that works for him and his sensible doctor sees no point in changing something that works.
But cyanocobalmin isn't commonly used in the UK, so it's unlikely the practice nurse would keep supplies of it. Which is why he keeps it himself and brings it along to appointments. In the UK it's much more common to have injections of hydroxocobalamin, which the practice nurse will have.
Most people just pop along to the nurse for their jabs. Some, like me, have doctors willing to prescribe hydroxocobalamin for self-injection at home.
I'm not sure if he knows what it is he has, but was given it 4 weekly but they were going to try and do it every 3 months I think, but he can't go more than a month, he has missed two now and he's been so Ill since new year, he's getting worse as the days go on, he's having trouble breathing, no energy, so, so run down, it's unbelievable, this man was always on the go, now it's so hard just to walk to the kitchen, he's had one illness after another, no rest in between, I've never known him to go to bed, he comes in from work, has his tea and goes to bed, it's like his no immune system I'm just so worried he will collapse. He can't go more than a month, even I know when his last b12 is running out. He collapsed at the beginning and was rushed into hospital by blue lights, he'd just been to see his doctor because he felts so ill and doctor sent him home, said he was fine, he didn't make it home. This is how he was diagnosed as having it in hospital, I'm so worried it will happen to him again.
I'm so grateful for your support, it's helping me a great deal, thank you so much, i wish I'd found this site a lot earlier, thank you x
So so true, it's our British hard honest people who work suffer more, they expect you to take two days off work in 1 week to see the doctor on one and the nurse on the other, our systems are failing us, we are all suffering what the cuts the government have made. It's unbelievable what this country is coming too
I got fed up with trying to get through to my doctors about how I felt and then feeling awful between jabs like many others. I now self inject and feel absolutely great and at last back to normal. I get my medication from Goldpharma in Germany. Good luck whatever you decide.
Can I ask, did you have someone to show you what to do. I've spoken with my partner and he's like you, had enough and thinks this is the best way forward, can you give me any more details. Thank you
Hi Wendyjanebergin, if you become a member of the facebook group they have files where you can look at videos of how to help yourself, also there are many people on the site who would offer help and support. This group and the fb group have been invaluable to me (I've not been at this too long), I would have been lost without them. Obviously the choice is yours. Hope you get something sorted out soon, it's an awful ordeal for both you and your partner.
Thank you, I'm so glad I found this site and I'm so glad for the Internet, the support I'm getting off the site is helping me to understand it and trying to find out more on other ways of getting the b12, he's got to the point he wants to get it done privatley or self inject, he's so up for that, which would save all the hassle of the doctors surgery, I'm so thankful for everyone on this site for there import, support and help.
I'm sorry Wendyjanebergin but his doctor should not be allowed to "get away with it" he needs to be shown the error of his ways.
I too have a "one size fits all" doctor who, without taking into account my height, (6' 4") or weight (13 stones) metabolism or the fact that I'd had P.A. for over 40 years, when I told him how tired and lethargic I was becoming in the run up to my next injection he simply said it was nothing to do with the P.A. as I was having the b12 every four weeks. It said on the original prescription "every four weeks" so every four weeks it must continue to be because that's what it says in the manufacturer's instruction booklet ....
I then joined the Pernicious Anaemia Society (PAS) and my first post ran something like "Am I the only one in the world to suffer symptoms in the run up to my next b12 injection?" and I was amazed at the responses and replies I received and armed with these other confirmations I confronted and stood over my GP (I did say I am six feet four didn't I?) and he "allows" me to have the odd three week one "when I feel the need" and my prescription now reads "Use as directed"
As fbirder says I am "unusual" in that I am (historically) treated with cyanocobamalin but the principle of "getting through" to the next injection is the same.
P.A. patients treated with the longer lasting Hydroxocobamalin originally had their jabs every three months and that has now been reduced by 33% to two months so in effect, at the moment, I'm looking to get only a 25% reduction in the time interval so I may well, in the not too distant future, find myself towering over my doctor again.
Continue being strong for your man - you are not alone!
Dear Wendyjanebergin,
Don't be afraid of self-injecting. I had to resort to that when my doctor would only give me one injection every 3 months. ', and I was feeling dreadful after one week! I have P.A. And I even had to pay a private doctor to get the diagnosis! Blood test £70 Consultation £100. (2 YEARS AGO) I found out from the Internet how to self-inject,but of course I was scared. Now it's a routine(weekly) It has changed my life! You can change your partners life and your own. Of course it is nothing but a scandal that we have to resort to this. One day I hope ,the medical profession will see the light.,and not just be the servants of the pharmaceutical industry,whose PATENTABLE drugs mAKE THEM FORTUNES. (VITAMIN B12 IS NOT PATENTABLE THEREFORE OF NO INTEREST )
I get my injections every 3 weeks at my doctors surgery, it is hydroxocobalamin that i get on prescription and keep myself. A while ago i saw a haematologist and she reduced my injections from every 6 weeks to every 12 weeks without telling me, i only found out when i went in to see the nurse and she refused to give it to me. That night i got my husband to inject me, i talked him through it as i am a nurse and it was less painful than some i have had from the surgery. The following week i saw my GP with all the info from the PA society and he wrote to the haematologist again. This time it was the consultant and she said i could reduce to every 3 weeks for a trial and review after 3 months, i am now on injections every 3 weeks. The only symptoms i now have are extreme body pain, pins and needles, burning sensations, itching and stiffness, this is another battle at some point.
Hi,
"P.A is the reason he has to have them"
Has he ever had an IFA (intrinisic factor Antibody test)? This can help to diagnose PA but is not always reliable, people can still have PA if IFA test is negative.
I'd urge you to contact the PAS (Pernicious Anaemia Society)
01656 769 717
Office open every day 8am till 2pm except sundays. if you leave a message they should get back to you within a few days. Lifetime membership costs about £20.
They can sometimes intervene on behalf of members.
Recent UK Documents make it clear that patients who are symptomatic for B12 deficiency should be treated to avoid neurological damage.
ukneqas-haematinics.org.uk/...
Google "BCSH Cobalamin and Folate Guidelines"
These guidelines came out in 2014 and I read the whole document. I was told NHS should be using them. I gave a copy of these to my GPs along with a copy of Martyn Hooper's latest book. Some GPs may not be aware of the BCSH Cobalamin guidelines and may be using local b12 deficiency management guidelines that have not been updated since the BCSh Cobalamin Guidelines came out.
Info on recommended treatment for B12 deficiency is in
1) BNF (British National Formulary) Chapter 9 section 1.2
All UK Gps will have access to BNF. Local library may have a copy. 2nd hand copies available from a popular internet retailer.
2)BCSH Cobalamin and Folate guidelines
I found page 29, a diagnosis and treatment flowchart useful.
3) This link contains similar info to BNF in Management section.
patient.info/doctor/pernici...
How many loading doses did he get when treatment started? A patient with B12 deficiency who has neurological symptoms would normally get extended loading doses and also see a haematologist acording to BNF.
Untreated or inadequately treated B12 deficiency can result in permanent neurological damage. In some cases, patients suffer subacute combined degeneration of the spinal cord.
UK B12 websites
I found it helpful to spend time looking at the info on these websites.
pernicious-anaemia-society....
Useful b12 books
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency
by Martyn Hooper
Could it be B12?: An Epidemic of Misdiagnoses
By Sally Pacholok and JJ. Stuart
I am not a medic just a patient who has struggled to get a diagnosis. I have written some detailed posts on other threads. if you search for them there may be some other info that might be helpful.
The self-injecting is the best way to go. It makes a huge difference, is cheaper and much more convenient. My doctor actually suggested it, and showed my partner how to do it. I live in South Africa, so maybe it is easier to get supplies and maybe I just have a really superb doctor.
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