Gransnet forums

B12 deficiency.

(34 Posts)
tiffaney Thu 14-Jun-18 15:54:02

Does anyone suffer from b12d/Pernicious Anaemia and self medicate with injections as they feel the 12 weekly 'one size fits all' maintenance dose is not enough?

polyester57 Thu 14-Jun-18 16:07:32

I was intriqued by the title of this post. My son is a vegan and I have been buying him B12 vitamins in tablet form for ages. Recently, I have read how lack of vitamin B12 can lead to depression and have started taking them myself. Feel a lot better. Or is it just psychosomatic? Have never heard of injections.

Teetime Thu 14-Jun-18 16:09:44

As a DN I had a regular list of patients needing their injections some monthly some three monthly.

merlotgran Thu 14-Jun-18 16:58:11

DH has a B12 injection every 12 weeks. I always know when he's due for one because he gets very tired and yawns constantly.

How can you self medicate with injections?

Granny23 Thu 14-Jun-18 17:10:23

Dh and I and both our DDs have 3 monthly B12 injections from the practice nurse, following blood tests and a short course of weekly injections. One DD was found to be very short of B12 and was advised to ask her near relatives to be tested as the condition runs in families. Taking B12 vitamins or increasing B12 containing foods in your diet does not help at all because the problem is a shortage of something or other in your gastric juices, which is needed to extract B12 from your food. Hence the injection of B12 direct into your bloodstream where it is needed.

tiffaney Thu 14-Jun-18 17:28:43

I was diagnosed with Pernicious Anaemia 15 years ago and coped fine for 10 years. But the last 5 years l noticed my jab wasnt lasting as long. I was then diagnosed with AMAG (Autoimmune Atrophic Gastritis) related to the PA. I knew little or nothing about any of this so l started doing my own research and joined a reputable support group which has upwards of 18,000 members. I've learned more in 2 years from them about my condition than in the previous 13 years. I would say that 90%+ of members cannot survive on the standard 12 weekly injection (which equates to 4ml per year!) and are purchasing b12 (hydroxocobalamin) from a reputable company and are self injecting. I struggled with the decision myself having been told by a gp that you can 'overdose' on too much. Rubbish, it is a water soluble vitamin and what you don't need is excreted in urine. So l am now considering it to get my life back, not feel exhausted 3 weeks after my jab and take control of my own health.

MacCavity2 Thu 14-Jun-18 18:24:21

Have needed B12 for over 20 years and because it has never lasted for the 12 weeks recommended, I persuaded the practice nurse to teach me to administer the injections. The ampoules are on my prescription form and the nurse supplies needles etc. I inject every 10 weeks as this works for me.

tiffaney Thu 14-Jun-18 18:42:37

MacCavity can l ask where you inject and if you would do it more often?
Granny23 yes it's Intrinsic Factor that's missing in your stomach. If you have IF antibodies it means your body is literally attacking itself and your stomach isnt absorbing it so b12 needs to go directly into your blood stream. As many in your family need b12 l would definitely recommend joining the B12/Pa Support Group.
And polyester57 l would keep an eye on your vegetarian son and maybe request a blood test specifically for b12, folate and ferritin. I've never met anyone else with AMAG except in the support group.

MacCavity2 Thu 14-Jun-18 19:00:02

Tiffany I inject the top of my arm in the muscle. I use my strong reading glasses, take it slowly filling the syringe making sure there are no bubbles. I buy antiseptic wipes from chemist and make sure there will be no interruptions. Also have no hesitation giving myself B12 whenever it’s needed. One size does not fit all as my consultant says.

tiffaney Thu 14-Jun-18 19:43:19

Ok so now l have to admit l have bought some b12 and all the needles, syringes, wipes etc. I just need a last push.
I have to add here, it is not illegal to do this, l'm not a drug addict, maybe the idea of injecting oneself is a bit alien but, if l was diabetic l would have to do it. Can you imagine a dr saying to a diabetic 'This is the standard dose of insulin. Everyone gets the same. If you feel like you're running out of steam, tough! Thats all you're gonna get. Well this is how l feel. I've done my research. I'm not breaking the law. Just because someone at NICE HQ says 1 ml per 12 weeks, it doesn't mean its right. Surely l can't be the only person in the history of Gransnet to hold this view.
If you dont find 8/10/12 weekly jabs enough please respond, please tell me your story.

jeanie99 Sat 16-Jun-18 08:03:15

I don't eat meat so take a B12 supplement daily.

MaudLillian Sat 16-Jun-18 08:52:12

I am vegan. People often assume that veganism brings B12 deficiency, but it doesn't - you are no more likely to suffer with this as a vegan than on any kind of diet. It's modern farming practices that are responsible, because the soil is impoverished now and we wash all our vegetables to death. Our ancestors ate dirt, basically, and the dirt was full of the bacteria that B12 comes from. Grazing animals, of course, took large quantities of it in with the vegetation they ate, so eating their flesh gave humans B12. Nowadays - not so much. In fact, most animals receive supplements, because they are not feeding naturally at all and their fodder will be just as depleted of useful vitamins as our plant foods are.

This means that most people probably need to supplement with B12, no matter what or who they eat. I have only once had severe anaemia and that was when I was going through the menopause. In fact I had to have a blood transfusion - this was in 1999 when I was 44. This was way before I went vegan.

I take a supplement pill occasionally - usually when I am away from home and not eating my regular sorts of foods. The last blood test I had, everything was fine. I find being vegan is actually extremely healthy, which is a benefit, because I did it for ethics. I have vitamin fortified plant milks everyday as a matter of course - on my cereal and in my tea and coffee, as many of these dairy alternatives come automatically with it added -so actually I scarcely ever think about or focus much on B12. Absorption is sometimes a problem for some folk - and that is not something over which we have much control.

jasmina Thu 21-Jun-18 21:43:20

I wonder if a lot of people are B12 deficient and don't know it. One situation is where the levels are lower than the recommended range on the lab report. The other is where the levels are normal but one's body just needs more B12. I've noticed much more energy and better sleep after taking B12.

retrofunk Sun 05-Aug-18 10:07:38

I realise that this is an oldish post, but I just wanted to Reply to you Tiffaney. I also inject B12. GPs and nurses don’t understand it at all. The B12 injection
ampoules are available without prescription in much of Europe and the rest of the world. I inject into my thigh muscle, I’m doing loading doses again as I have neurological symptoms and it also affects my memory and cognitive functions. My B12 is caused by malabsorption so tablets don’t work for me.

MaudLillian as a vegan you need to know that there is no B12 in any plant based food, only in meat, fish, eggs and dairy. So it would be a good idea to take B12 supplements as B12 Deficiency can cause some truly horrific and disabling symptoms and worse if left untreated. In my experience it creeps up slowly and is easy to dismiss in the early stages. I also believe many many cases of B12 Deficiency are being misdiagnosed or untreated/overlooked, costing the NHS a fortune I’m sure!

tiffaney Sun 12-Aug-18 17:24:22

retrofunk - Hooray! I had despaired of any gransnetters understanding what I meant. My original post was aimed at those with a diagnosed b12 deficiency and/or Pernicious anaemia, not really at vegans and vegetarians so you are the proverbial 'needle in the gransnet haystack!'.Surely we're not the only 2 people on gransnet who are aware of self injecting!. I agree with everything you say, GPs have no clue how to treat this condition, wasting money needlessly on misdiagnoses. I've been self injecting now once a week since before I posted and I feel so much better. I am 72 and don't intend to spend whats left of the rest of my life feeling like I did on the meagre 8 weekly injection grudgingly given by the NHS. Can I ask how often you SI and are you a member of the Pa/B12 deficiency support group? I'm sure you will be! This is not the official PAS group run by Martyn Hooper btw. Look forward to hearing from you.

paddyann Sun 12-Aug-18 21:44:53

has anyone used the B12 patches? My MIL isn't eating properly and hasn't been for some time ,maybe a year or more.She's being cagey about it so I cant be sure .She is complaining about fatigue ,has difficulty walking even short distances and has problems with weakness in her legs.
I told her to speak to her GP about supplements or get a blood test but she says they told her her last test ,3 years ago was fine and she doesn't have pernicious anaemia .I wasn't suggesting she did just that she might be deficient in it becauuse of her poor diet.So I've been checking out Vit b12 supplements and saw these patches ,I think they would suit her better than pills ,just looking for advice about them .

tiffaney Mon 13-Aug-18 12:24:39

Paddyanne l've never used the patches as l'm not sure they'd work with malabsorption, but l would say definitely try and get your MIL to have a blood test. B12 deficiency creeps up on you and can only get worse if not treated.

M0nica Mon 13-Aug-18 16:11:31

paddyann an awful lot can change in three years! The fact that your MiL was OK then doesn't mean she does not have a problem now.

I would be very wary of self prescribing any specific supplement, especially for someone else, without having had medical tests to see whether this was the problem and find the true course of the problem before buying any supplement..

Tiffaney's case, where she has had the deficiency diagnosed and is receiving a standard treatment, which is inadequate to her needs is a very different situation.

paddyann Mon 13-Aug-18 16:37:03

I know that Monica but she;s digging her heels in and refusing to see the GP ,from what I've read B12 wont cause any harm and will be peed away .I was just thinking about a trial time with it to see if it helps.She's a bright articulate person usually but her concentration is gone and she is repeating herself all the time.I think she's worried about dementia so thats why she wont see her doctor .If a supplement helped even a bit she might feel the doctor isn't a big issue and get proper treatment she's in her mid 80's and she thinks the doctor wont treat her because of her age .I'm just worried about her .

paddyann Mon 13-Aug-18 16:37:57

a bright articulate person.Dont know whats happening with this keyboard

M0nica Mon 13-Aug-18 17:17:43

paddyann, there was an article in the paper this weekend saying over 40% of people will delay going to the doctor, in case they get a cancer diagnosis. DFiL was like that, finally when he collapsed in the street, was carted off to hospital to discover he 'only' had Parkinson's Disease, he celebrated the fact. shock

paddyann Mon 13-Aug-18 20:35:15

I've spoken to my SIL and she will make an appointment for her mum and actually take her to it.They stay about 50 miles from me so its not so easy for me to do it as I dont drive .Hopefully she'll tell the doctor the truth and get some help.

M0nica Mon 13-Aug-18 20:52:55

paddyann, hopefully your MiL will let your SiL go into the appointment with her and she can fill in any gaps in what the older woman says.

farview Thu 06-Dec-18 17:13:31

Just searched out this thread as my b12 injection isn't due until the 27th Dec...but I know I need one now..not a scrap of energy.. luckily I have my ampoules that I got on prescription so my d.i.l can do them(practice nurse) anyway after reading all these posts have decided to ask her to do it as I can't possibly wait another three weeks...

petra Thu 06-Dec-18 21:36:30

I have pernicious anemia but the only way it affected me was hair loss. Initially my Dr was confused when the results came back as he never sees me and he knows that I have plenty of energy.
I don't know if I could inject myself as my injection hurts like hell so I think there's a chance I would pull back.