B12 Deficiency.

[KarrisWhiteOak]

I’ve been told by my doctor I’ve got Pernicious Anaemia. I just wanted to hear from other who have the same condition, how it effects you, family like health - anything really

I find I’m really easily exhausted, Short tempered & unlikeable about a month before next injection is due.
My skins is grey and hair falls out.

When I’ve had injections it take about a week to kick in and then I feel normal and like a fog has lifted.

Is that similar for anyone? Am I stuck in an emotional rollercoaster for life now?

I have pernicious anaemia too. I am unable to absorb B12 so upping the amount of B12 rich foods doesn't work for me. I have been having injections for about 6 years now, still 12 weekly, and had no luck in getting them increased. I was a week early booking my injection and got sent away with a telling off.

My hair always falls out too, I have severe pins and needles and extreme tiredness about 6 weeks before the next injection. I am seriously considering buying b12 and doing it myself too

Oh and to add I have nerve damage to my knees and to my elbows as diagnosed by hospital..... no increase in b12 injections. Not sure why they are so set on now allowing us to have the injections more frequently, but it is bloody frustrating

Good grief. This is horrid for all of us and I’d never been aware of it.
I can well imagine the amount of people who suffer with this and have no idea what it is.
Crazy.

Hi @KarrisWhiteOak

I was diagnosed with PA when I was 23 as a 3rd year student nurse. I had my 6 loading dose injection and then I move cities and my new drs surgery wouldn't give me any further injections because of the "Rihanna" fad in younger women.
My b12 eventually dropped very low and I was moved to a new surgery where I have had my injections every 10 weeks since then.
I find I am totally wiped out a week or so before my injection is due but I also don't get the massive rush of energy or relief from the b13 that some people get. I think my injections just keep me bobbing along.
Since my diagnosis I have also been diagnosed with two other auto immune conditions and the combination of them all has left to neuropathy in one of my feet.
It may be worth having a discussion with your GP about having an auto immune disease profile as a lot of people with one auto immune condition have another form also!
X

Has anyone said to a GP if you don’t up it I’ll do it my self at home?

@MadamePeony I feel for you.
I had read that it normal comes with other auto immune diseases. I think I’ll add that to questions for the gp.

I just struggle with how much my go didn’t really know about it or seemly care, “just go read nhs website”
Well actually this seems fairly serious. 🙄 I normally love the nhs.

After looking into all this info & with the symptoms I have then I should have b12 injected every other day until there is no improvement felt and a referral to haematology but nope, one loading dose then every 12 weeks.
I hope brexit doesn’t stop us being able to order it from Germany. I am def going to self inject -well get DH to do it
Thanks for all the useful info.

Are you brave enough to show your GP the guidelines Lellochip linked above bringbackthestripes? I fall into this category too. Low out of range B12, IF negative, not diet-related, neuro and gastric symptoms.

My problem with self-injecting is that you're kind of removing yourself from the system and might have more trouble getting further help if you need it?

No, not brave enough Black They won’t even let me have it earlier than 12 weeks and have me pegged as a hypochondriac I’m sure.

I will continue to have it with them but will just do one in between so I am still on their radar and still receiving. I will just have to work out how to time it. They may think I’m having it a few weeks late each time but I will do it so I have a dose every 8 weeks. My friend is at a different practice with fewer symptoms than me (she went low due to diet then raised naturally then back to low again) and has been advised to have every 8 weeks so I know it’s not going to be doing me any harm.