Anyone had/having B12 injections? How long till you felt better?

[MySunnyDay]

I have just finished a course of 6 loading B12 injections. My b12 was 119 ng/l. I had actually gone to the Drs to talk about upping my HRT as I thought my symptoms were related to the menopause (I'm 51). Symptoms - ridiculously tired (even after good rest) and zero energy, light headed and feeling 'faint' but not actually fainting, really bad brain fog, pins and needles in face, hands and feet, and a weird sensation in my tongue. Some of the pins and needles have eased off after the injections and on some days in between injections I did feel like I had a bit more energy. But today, after my last injection yesterday I feel worse than ever. I feel like I can't move and I am someone who is good at pushing though tiredness etc. The Dr seemed to think I would be feeling better by the end of the course?

I'm just interested to hear about other people's experience with low B12 and recovery? How long did it take? I'm wondering if I'm expecting too much too soon.

I have to go back for a blood test for pernicious anemia next week. In some ways I hope that test comes back positive because if it doesn't I'm scared I'm going to feel like this for the rest of my life (there was nothing else in the bloods to indicate anything else was deficient). I think the Dr said I would have another injection in 12 weeks if it is pernicious anemia. If it's not PA she is going to prescribe B12 tablets. Although this doesn't make sense to me as I must have a problem absorbing B12 as my diet is very rich in B12 (not vegan or vegetarian).

Be interested to hear about anyone else's experience.

I have Pernicious Anemia.

Dr’s are very dismissive and mostly lacking knowledge so I’m not surprised you were told you’d feel better.

I felt marginally human again after my loading doses but not better. I get injections every three months and it’s nowhere near enough.

Have a look at the Pernicious Anemia society website - it’s got loads of information and will be easier for you to compare to your own experience/circumstances.

If you have PA you will probably need to self administer as every 12 weeks is not enough
I get my b12 from amazon.de as its available over the counter in Germany

@CCSS15 have you ordered since Brexit, I think I need to reorder soon and I'm a bit worried

Thanks @Witchbitch20 I'll take a look at that website. Yes, the GP did seemed slightly dismissive of it all. She was far more interested in my slightly raised blood pressure and spent ages talking about that than the B12 deficiency 🙄

Self injecting sounds drastic @CCSS15 but if it makes people feel able to function then I can completely understand why you would do it. Will look into it. Wonder why we can't buy it in this country but you can in Europe?

You can get injections at a lot of private clinics. The cost varies though between about £15-£40 a time. If you've been severely deficient it may take a bit longer to get your energy up. Definitely persist with it.

Haven't ordered post brexit as did a big stock up in advance - just had a quick check and there are still one or two dispatching to UK so should be OK

I was severely deficient and had to have the loading doses but my test for pernicious anaemia came back negative. The GP wanted to put me on supplements but my initial levels had been SO low that I asked for a second opinion, and that GP put me straight onto injections every three months. I’m still not 100% though six months later - I still get the pins and needles and some fatigue. I use the spray supplement as a top up in between injections.

@TheOnlyLivingBoyInNewCross I think I'm probably going to end up in a similar boat to you if my PA test comes back negative. It sounds like a real battle with the NHS to get this condition treated appropriately? Hope you start to feel better soon.

Definitely worth buying and learning to self inject or get a friend/relative to inject for you. It's less than £1 a shot (or was before Brexit) as opposed to £50ish privately.

I had loading doses but it took the whole lot before I felt better and even then it was gradual. I've also looked into having Covid and subsequent B12 deficiency because I have no idea of the cause and I want to know why. Symptoms came back again and I had to argue that it was not depression. This time folate deficiency.

Hi OP
I was diagnosed with PI about 2 years after the birth of my DC...just thought I was a tired working mum until I fainted in the street. My levels were through the floor and I was on the point of being admitted to hospital.

I felt better immediately after the loading doses and now know when I'm due an injection as I get finger tingles, dodgy tum , extreme fatigue and sleeplessness.

Luckily I get B12 injection 4 weekly as I have a very understanding GP who asked me to track symptoms to see how frequently I needed an injection.

Agree with PP to join the pernicious anaemia society and also read the NICE guidelines attached.

Your B12 level will be artificially high after the loading doses but that doesn't mean that your body is absorbing it properly, just means its present so don't be fobbed off.

If you want any more info just message me.

NICE guidelines

I ended up doing my own injections as my dr wouldn't even prescribe tablets. There's a book called 'could it be b12' by Sally Pachelok which is such an eye opener and explains why Dr's tests aren't reliable. I felt really bad after a couple of my injections until I read there are certain cofactors needed which soon rectifies the problem. Sally Pachelok was an American nurse who was so appalled at rhe Dr's lack of interest in treating b12 deficiency that she wrote this book which is amazing. There's also a free film you can watch online. Hope you feel better soon 💕

I had bariatric surgery and was told that I'd need B12 for the rest of my life. Tablets prescribed for about 6 months, then no more. I began to get excruciating pain in my toes and feet at night. So I ordered B12 online, although usually I wouldn't dream of getting tablets through the post. Solved my problem within a week, but this was tablets (not injection).

I didn’t begin to feel better until a long after I started the injections - about 6/7 months maybe? I had the loading doses then one injection every 3 months for a year. I took super strength tablets alongside the injections. I did have other life things going on which could have been why though!

Everyone gets tested for PA but it’s quite rare I think.

Sounds like doing your own injections might well be the way to go unless you have an understanding GP like @Glorieta has. It doesn't sound like GPs are following the NICE guidelines at all? It's quite worrying... I will definitely mention the guidelines to my GP - so thank you for that.

Will check out the book and video @Pmen Thank you! I just read about the co-factors on the PA site. I suspect I need to up my folic acid as it's on the low side (but not deficient).

That's interesting about the potential link to Covid @Bralessandfree My B12 level was fine in 2020 - 300+ (it was checked due to menopause issues). The two medical things that have happened since then are Covid and having my gall bladder removed. Who knows.... But when I mentioned my B12 injections to a friend she said she has come across two ther people recently who have been diagnosed with PA. She had never heard of it before.....

Thanks everyone!

I feel better after 3-4 days. I get them every 7-8 weeks. I know when im low.

and so does everyone else in the house, its like pmt!

I have Pernicious Anemia (Intrinsic Factor antibodies are sky high), but I've never had any symptoms whatsoever. No fatigue, no pins-and-needles... nothing.

Dr. prescribed B12 monthly injections, but I always feel terrible for 48 hours after an injection so I do them once every two months.

Yes, @CeriB82 I am super irritable. I have no patience at all. I just want to sit in a dark room on my own in silence. Not possible in this house I'm afraid...

Good to know that it can take time to take effect @Christmascracker0 - fustrating as that may be.

@MySunnyDay its what i do! Lock myself in my room with Netflix. DH knows to leave me alone.

its awful but at least he knows its not him snd it passes. Its like a wave of depression.

@Theoldwrinkley were they quite high strength B12 tablets? i.e. higher dose than what you can get in a health food shop in the UK? If it works for you it seems easier than self injecting?

I have to go back for a blood test for pernicious anemia next week

@MySunnyDay Make sure you wait at least 2 weeks after your last B12 injection before having the blood test for PA. The Intrinsic Factor Antibody test can show a false positive after a B12 injection.

Thanks @GulfCoastBeachGirl I'm beginning to wonder if my GP surgery are completely clueless? I'll move the test on a week.....

I'm intrigued that you have no symptoms My GP said that a lot of people will be deficient in B12 if you tested everyone routinely, but they will have no symptoms and be completely fine and not need medication - which is why she wasn't a "big believer" in assigning symptoms like fatigue to B12 deficiency. WTAF?? Good job your GP is on the ball....

I'm intrigued that you have no symptoms

Yes, it was very strange to be diagnosed with an autoimmune disease and have zero symptoms🤔It was discovered during routine bloodwork. I was very, very tempted to just ignore the whole thing, but untreated PA can have some nasty consequences so I put up with the lousy B12 injections (honestly, they make me feel like crap).

Very intrigued with which ones to go for on that Amazon.de?

Interesting to read this thread. I'm going the docs tomorrow after a blood test 2 weeks ago showed abnormal levels of B12 and D. I've been having the usual symptoms extreme tiredness depression tingling in hands and feet muscle weakness palpitations memory loss and brain fog etc. That's was all that came back as not right but I don't know how low. I eat lots of meat and eggs so i dont think its caused by diet. My main bugbear is I am utterly unable to lose weight :( probably linked to not having the energy and stamina to do alot of exercise. Been getting migraines alot lately don't know if that's linked but I will be mentioning it.

Interestingly I feel like this has all been since I had covid in November last year followed by a severe chest infection. I haven't been right since. I'm praying the doc will jelp me but I'll def be on my guard about being fobbed off now. I've no faith in the NHS anyway