B12 injections

[Traceyma]

Reading the posts about gps surgeries not doing our b12 injections with worry. My surgery is one of the ones not doing them but a couple of friends are being provided the stuff by their surgeries to self inject. I dont know why all surgeries cant do this. Its very frightening to be denied our medication with no clear indication of when we will be back to normal. I have resorted to buying needles etc and the b12 online but we shouldn't have to do this. It's not being taken seriously.

[wedgewood]

It is a scandal of huge proportions . My neighbour, who has had Pernicious Amaemia for several years ,has received a letter from his surgery , telling him that he will get no more B12 injections . He has been told to take B12 tablets instead , which he must buy himself . It’s not called Pernicious for nothing . It’s happening all over the country . So where has this directive come from ? Does anybody know ?

[Traceyma in reply to wedgewood]

That's outrageous. The whole point of injections is to bypass the digestive system because tablets wont be absorbed . Its causing people extra stress on top of the worry about catching the virus.

[helvella in reply to wedgewood]

In today's Downing Street presser:

Dr Jenny Harries says that clearly from a medical, professional perspective, people must use evidence-based and properly trialled treatments.

Nobody should be injecting anything, she adds.

People will take that seriously.

I can't help thinking that a doctor in a national press briefing should know what she is talking about.

I know that was in the context of the USA discussing injecting disinfectant, but when quoted, the context is lost.

[22Monkey22 in reply to wedgewood]

The government have instructed Dr surgeries to not do them (I believe)

[Traceyma in reply to 22Monkey22]

I wonder if that is true if it only applies to b12. Some people I know get injections for other complaints and have been given theres ok

[jingles64 in reply to wedgewood]

Directive is from the NHS. My letter from the GP was sent with an attached letter from my local health authority, Gloucestershire saying they were discontinuing offering injections, Can’t even get a script for injecting myself.

[Traceyma in reply to jingles64]

Is that just now with the pandemic or permanently?

[Sleepybunny]

Hi wedgewood

The BSH (British Society of Haematology) published some guidance for GP surgeries to use during Covid epidemic and it suggested that oral tablets are okay for some. I'll try to find the link.

b-s-h.org.uk/about-us/news/...

Click on General Haematology tab in link above

then

Click on BSH Advice on Supplements tab

I have some major concerns over what is in this guidance as it seems quite different to what is in the guidelines the BSH published in 2014.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Has your neighbour looked to see if any local treatment guidelines have been published recently in your area that have promoted oral tablets rather than injections?

[Traceyma in reply to Sleepybunny]

I think it depends on what kind of b12 deficiency you have. It's all to do with whether you produce intrinsic factor as far as I know. The guidelines are far from clear.

[Cherylclaire Forum Support in reply to Traceyma]

"What kind of B12 deficiency you have ": this is something that in most cases they do not seem to know.

Depends if they were looking for a reason/ whether they arrived at PA simply by elimination of all else first/ where patients currently are in the search for a diagnosis/ if the test results are reliable:

In a survey, the PAS discovered that 34% of the participants waited 1 year for their PA diagnosis, 14% had to wait over 10 years. (During which time, they still had PA, of course - just no diagnosis of it)

The Intrinsic Factor antibody test (IFab) is not a reliable indicator since it is wrong 40-60% of the time. Martyn Hooper, founder of the PAS, had to be tested 3 times before getting a positive result (which is 95% reliable).

So it's not just the guidelines that are unclear- but the whole process.

[Traceyma in reply to Cherylclaire]

I totally agree. I was diagnosed with pernicious anaemia but it took nearly a year to diagnose. I had pins and needles and numbness. I also developed tinnitus at that time. I cant prove it was the b12 deficiency but my ent specialist said it was nerve damage. My gp did say the intrinsic factor test is not reliable. The problem is that the whole issue isn't taken very seriously and patients concerns are brushed under the carpet

[Cherylclaire Forum Support in reply to Traceyma]

I haven't got a clue what I've got.

All I know is that all my symptoms fit only B12 deficiency, I was B12 deficient and treated as such : loading dose did nothing at all, waiting 3 months after that was deteriorating, so much so that GP had my MMA tested and it was found to be raised. Serum B12 was then over 2000ng/L. Functional B12 deficiency was diagnosed by her, agreed by laboratory. I had reloading : 2 injections a week for 6 months. I was improving- then got worse again and so loading was stopped and I was told that this had gone beyond primary care. I was put on 1 injection a month. I was unable to work for 15 months. I had low folate and ferritin that needed a lot of supplementing and time to stabilise, osteoporosis of the spine- so vitamin D tablets on prescription.

5 years later, I've seen all the consultants and had all the tests. No new diagnosis, just disproving original one. MMA tested 5 times and always raised, but never high enough for concern. Haematologists wrote to my GP advising that I don't have more than 1 injection every 8 weeks. This is when I started self injecting. I got myself back to work part-time.

Since nothing else has emerged, I have decided to go with my GP's original diagnosis, even if a cause cannot be found, not even in DNA. What else can I do?

GP keeps an eye on me: checks my thyroid, folate, ferritin etc regularly- never my B12. She knows I self inject.

This works: frequent B12 injections. This doesn't work: less injections.

I'm not going back: I thought I was dying of an inability to survive !

If there is no reliable test for PA, then there is no way to prove that you have/don't have PA. So how can anyone be safely given tablets as a replacement ?

[Traceyma in reply to Cherylclaire]

This sounds like such an ordeal for you to go through. I get my injection every 10 weeks but I had to put my foot down at the gp because they would only do it every 12 weeks if they could. It's not taken seriously but everybody I know who has this starts feeling off colour before their b12 is due. Doctors always dispute this but we cant all be wrong. I'm always back and forward with auto immune type of symptoms including underactive thyroid and last year I had a pacemaker fitted due to electrical problems in my heart. Cant prove that they are related to the pa but who knows. The bottom line is we all need our injections and tablets are not a safe option as we would already be on them!

[Cherylclaire Forum Support in reply to Traceyma]

I would say probably "yes" to that: heart arrhythmia is on most lists of symptoms that I have seen. Like you said, who really knows ? For something so potentially damaging, so relatively common, so very little research.....

I have had a 24 hr monitor, which showed "ventricular ectopics" - where your electrical problems happen at the top of the heart, the pace-setting part, which if it goes wrong needs a pacemaker to maintain regularity, mine happen halfway down, where the signal gets transferred - which means I can get away with just taking betablockers. Or in my case, refusing them.

Luckily for me, ventricular ectopics are thought to be harmless, the cause is not known, and they can go away on their own. So I'm waiting for that to happen.

Anytime today would suit !

If you need any advice, don't hesitate to post.

Don't get ill just to prove that you will. Take good care.

[jingles64 in reply to Traceyma]

I have diagnosed PA and atrophic gastritis. Been getting injections for 12 years. According to NHS, I now don’t qualify for injections so who the hell does!

[Traceyma in reply to jingles64]

Same with me. I was diagnosed with pa in 2007 and have been getting b12 injections for this length of time. My gp said tonight I will no longer be getting my injection as I don t need it??? He mentioned new NHS guidelines but the Pernicious Anaemia Society have told me there is no new guidelines

[briarhillcat]

Yes it seems that a lot of doctors do not really understand that B12 deficiency is different from Pernicious Anemia. We NEED the injection.

[Traceyma in reply to briarhillcat]

You're right. If tablets were reliable we would be on them already with no need for the injection. I dont understand why we aren't allowed to self inject when diabetics etc do it every day!

[briarhillcat]

Indeed. Tablets or anything taken orally the B12 is just rejected because we cannot absorb it. Why can't the health people understand? I went for my blood test and asked if I could have my B12 and was told. "I cannot do it, I only take blood". She did send for a doctor (he is my doctor has it happened) and he said they have to abide by the rules they have been given. I told him I was going to self inject. He said he would not recommend it, but it was up to me if I felt up to doing it. So I am going to do that (practised on an orange last night) did it fine. Hope it will work on my thigh though. I think it is the thought of pushing a needle into your body. (but my neighbour has Diabetes and has to do that every day twice a day! Hope you get on OK. Take care and stay safe Traceyma.

[Traceyma in reply to briarhillcat]

Hi just wanted to tell you that after a phone consultation with my gp today he says I will no longer be getting my b12 injection as I dont need it???. I was diagnosed with pa in 2007 and have been getting my b12 for 13 years. Not sure how they can suddenly decide I dont need it without even checking my b12 leves in my blood. Theres something not right about this!

[briarhillcat in reply to Traceyma]

Hi Traceyma. You DO need them. So many doctors saying the same thing. I am going to self inject for the first time. Got all my stuff ready. Been practising on an orange. Good luck. You know your own body, so listen to that. x

[Traceyma in reply to briarhillcat]

Good luck with the self injection. I think that's the route I will go down. Take care x

[Traceyma]

I think self inject will be for me also. I'm not prepared to wait for maybe months before the gp will reinstate them. Good luck and take care xx

[briarhillcat in reply to Traceyma]

I think the (Mostly) German companies that supply B12 ampoules and the Medisave needle company will be very busy. But we need to do what is best for us. After they are OUR bodies and we know them best.

[Tuko123]

Hi I am new here, I am way over due my b12. I have been feeling really rubbish the past week. I keep on waking up during the night with really bad migraines and hear palpitations. Not sure if these are related to b12 deficiency

[Traceyma in reply to Tuko123]

Hi it could be especially if your injection is way overdue. I think everyone experiences different auto immune responses. The PAS have announced that after a meeting with the British Society of Haematology they have revised their guidelines so doctors should now be offering treatment in some form. Some surgeries were following the advice that we can go for a year without our injection as we store it in our liver. They have since acknowledged that this is incorrect and removed it from their guidelines. You can see the report on the PAS website. I would get back on to your gp especially if you are having symptoms which might be b12 related and ask again for your injection. Hope that helps a bit and good luck!

[Tuko123]

Hi thank you for your reply. I spoke with my doctor today and because it was 5 months since my last injection so I have to go to the surgery on Wednesday for my injection. Thank you

[Traceyma in reply to Tuko123]

Glad your sorted. 5 months is quite awhile to be without your b12