Does anyone know about b12 deficiency and injections?

[SagaNorenMalmoCountyPolice]

After a hellish few months of heart palpitations, severe fatigue, feeling dizzy and faint a doctor arranged for me to have blood tests to check my iron and b12 levels. Both have come back low, I have started to take iron tablets and had my first b12 injection yesterday, have 5 more injections over the next few weeks. Does anyone have any experience of this? If so how long did it take to feel better? Will I have to have these injections forever? Any advice would be much appreciated.

I'm going to add copies of a document we made to help my DD get better treatment from our GP, this apparently made it easier for our GP to justify the extra jabs to her superiors, so it might be a useful template to some. It shows the difference treatment can make too...

There is a second page, nut its refusing to let me add it I will try again later

Good luck with the appointment next week Saga I hope you get the support you need

Good for you Bonkerz - hope they come quickly for you so you can start to feel better soon. Keep us update with your progress

ScribbleJoy - she doesn't sound too clued up! I don't think many people (me included), understand just how serious a simple lack of a vitamin an be, nor the complications of getting it resolved.

That sounds like a tough experience RockinHippy It's a hard enough journey to go through for ourselves, so I can't imagine how you must feel going through it with your daughter I must admit, it has crossed my mind that I might have passed something, whether it be PA or something else onto my DC's. Although the bonus about me going through it, is my knowledge has grown a lot, so I will be in a better position to support and fight for them if I have to. That's a great template, thank you

I've just ordered an active b12 test via medicheck. I'm hoping it will show low level of active b12. It's ridiculous to think that GP can only measure inactive levels

Well I'm not sure how helpful that appointment was

The doc says that my lack of improvement was probably down to me not being able to convert the hydroxocobalamin, but that unfortunately methylcobalamin is not available on the NHS. So she's suggested I take the sublingual version to keep that going up, along with a huge list of other supplements! My ferritin level has increased slightly but is still half of what it should be so I'm going back on that. Folate is now above the range, despite me only taking Berocca and no specific folate supplement. I know that's not the best b complex to take, but we had loads of it, so I was using it up before getting a decent one. B12 went up by about 100 to 329 after a month of sublinguals, but I know that I need to take that with a pinch of salt.

She thinks it's food allergies now (which was mentioned at the last visit), so I'm going on the elimination diet to see if we can identify anything. I'm not letting go of the possibility of PA or B12 deficiency, but I'm prepared to see how things go for now. I'll come back to it depending on how my symptoms are, and keep taking the supplements in the mean time. My thyroid results aren't ideal either, so again, something to keep an eye on

That's interesting about your lack of improvement davina, I take cyano cobalamin now as I didn't feel I got much of an improvement on hydroxycobalamin and it works much better for me.
What's your ferritin level? Mine is still low despite taking iron daily but because it's within range, I can't get any doctors interested in it.

Thanks Davina - yes its been a nightmare to say the least, but thankfully we did get there in the end.

Unfortunately the poor kid didn't do so well with us as parents genetically - she now has 2 hereditary conditions, (EDS & PA) both of which come from both me & her dads side - even though neither of us knew anything about either of them before she was born :(

Treating the PA is having an amazing affect on her EDS symptoms though, so having watched her previously none bendy joints, become scarily bendy in the last 18 months when things got very bad for her, I am convinced that low B12 plays a big part in EDSH too & very hopeful as bad as the last few years have been, this is an answer that is going to change her life for the better - fingers crossed.

To the PP (brain dead roday, so cant remember more than one name)

You can buy Methylcobalin via a german company & get needles etc free from a needle exchange - there is a good facebook group in the links, on the link I posted below, they can help with this, plus advise on the cofactors - methyl is a bit more complicated, do you need to read up on it properly

My ferritin is a grand total of 36 - up from 22 after a months worth of ferrous sulphate. I mentioned getting it the optimum level and the doc said to take it again for 3 months. Hopefully that will help!

Thanks for the info RockinHippy And I'm so pleased your DD is doing well on both counts! I'm a bit loathe to start self injecting at this stage, until I'm sure that we've ruled everything else out, so I'm going to go along with the doc's plan for now. I will definitely consider it, if I get no better with the diet/food allergies and supplements though, so it's good to have the information for if and when I get there My symptoms are pretty minimal at the moment, except the fatigue that is keeping me off work. But I know that there are so many different things that can cause fatigue. It's great being more clued up on all these things though, and I feel more in control of helping myself than I have on a long time!

Hmm, my ferritin was 40, up from 24 and the gps just keep telling me it's fine.
Mind you, they've also just sent a letter saying that I have to go onto 3 monthly jabs now as there's 'no benefit to over treating'.

Just a thought Davina - I'm presuming that you are taking all of the B12 co factors?

If so, theres 2 possibilities (& apologies if already mentioned as I haven't RTFT)

1. Have you tried taking 5mg of folate instead of Folic Acid ? - some people cant process Folic Acid into Folate - theres a possibility this is DD, so I have her on Folate, we did swap to Folic Acid for a while, but as that coincided with her getting more ill again, Ive decided not to chance it until we know if she has the MHTFR gene defect (23&Me genetic testing)

1. How are your potassium levels ? B12 uses potassium up quite quckly, which is why you need the high potassium diet. I have hit a problem with this & if I take as much B12 as I really need for nuro symptoms, it makes me worse, not better. Thankfully this has lead to the discovery of a "slight swelling" on my adrenal gland, which12 along with the B12, could actually be the answer to a lot of health problems for me - in the mean time I am finding daily Diaralyte helps & less B12. The Diaralyte even brinks my high BP down

This has been so informative. I was tested for B12 back in May this year and it came back as 94. Turns out I have PA. I've had the first 6 loading injections and another one 3 months later. I am still exhausted most of the time. My brain seems muddled a lot and my memory is awful! I have tinittis too which is horrible. Any days I have off I end up sleeping most of the day. My house is a mess and I feel like I'm failing as a mother. Who knew that a vitamin could have such drastic affects on your life.
So thank you for posting. I've asked to join the fb group and I'm going to look into injecting myself.

Im adding these again - both this time as MN will let me now

They are what persuaded our own GP to hive DD more frequent jabs, plus a second loading dose

I've just been taking Berocca, vitamin D & K2-Mk7 this last couple of weeks, with 2-3 Epsom salt baths a week. My folate level has come back as 19.3 in a range of 3-14.4, so if anything it's too high at the moment.

I haven't had my potassium levels checked, but I eat bananas with chocolate icecream And given how restrictive this new diet is, I'll be eating a lot more!

Sorry you're suffering too, Ssfb. You are absolutely not failing as a mother! You are ill, and my house is a mess too It'll still be there when we start to feel well enough to tackle it. Hope you feel better soon

Hello, I hope I'm ok to join in. My doctor rang me last week and said my levels are 68 so I'm having injections, starting next week. This is all totally new to me but explains why I have been feeling so awful for so long. I actually couldn't remember what year it was last week when I was writing the date. I have read the thread so far and there is a lot of good information.

Hope Im ok to join as well.

I got diagnosed with Perncious Anaemia 3 years ago and then last year I was diagnosed with Rheumatoid Arthritis as well. The medication I take for the RA is actually keeping it well under control and I can walk properly for the first time in 18 months! However the Pernicious Anaemia is most definitely not under control and I feel awful.

My brain feels like it's all foggy and fuzzy all the time-I work as a 1-1 TA in a school and at times I literally can't focus at all. I also can't seem to get my breathe...I have to take huge big gulps of air and still feel like I can't breathe. They have already reduced my injections to every 10 weeks.

I had the last injection the 11 August and feel absolutely awful again now.

Im back at GP on tuesday but I don't know what else they can do? They won't reduce the time between the injections anymore-it took me months to get them to agree to 10 weeks rather than 12.

There are ways of ordering B12 online and then self injecting. Facebook group I mentioned above is full of people who do this and has recommended suppliers, etc.

Ihearttc I am a TA as well and struggle to get through the day and keep up with the demands. I have joined the Facebook group as well and there is so much information, its taking me a while to get my head around all this. Its so nice to talk to others in the same boat who understand.

Hi Meg and Iheart

I've been off MN for a few days as I've been floored since Saturday This new diet is causing havoc but I feel like I'm coming out the other side and detoxing which can only be a good thing!

Hope the injections are going well Meg!

How's are your cofactors Iheart? Folate, ferritin, vitamin d etc. If they are low, then that could be causing the brain fog and fatigue

Hi Davina, sorry you have been feeling rubbish and hope you continue to improve. I went for my first jab yesterday but she didn't do it as my appointments were not alternate days so my first one is today at 14:50. She even had her gloves on amd.we.had discussed which arm to inject! Talk about stressful!!

Ooh good luck! Bit rubbish they had you go down to the surgery for no reason though My top tip - ask her to inject it slowly, as it's less painful that way if it's going to hurt. Some people do complain the B12 going in can be painful - my first one was, but all the rest were fine

Right, the wasn't too bad, needle.fine, stung going in amd now my arm aches BUT it will be worth it hopefully. Next one Friday.

Woo! Onward and upward Glad it went well.

Thanks Davina, I won't be so scared on Friday now. And my arm has stoppped hurting as i took some ibuprofen. Early night and will see what tomorrow brings.

That's great. Get as mùch rest as you can as exercise depletes B12 Goid excuse for putting your feet up and doing the minimum!

Had my private test results back today. Level was 184. It was 500+ 6 weeks ago so I'm burning through it. Going to start SI tomorrow then every other day for a little while till I feel better.