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?

Hi Op

You might get more responses over on the autoimmune thread as PA is an autoimmune condition.

How often are you having injections? I believe you can ask your GP to increase the frequency from every 12 weeks to every 8 weeks if you're finding that symptoms are returning.

Could I ask how you were diagnosed? I've got B12 levels of 122 despite taking OTC supplements since January and GP has just prescribed me a series of 'loading dose' B12 (5 injections over 2 weeks). He said I don't have PA though as my intrinsic factor test was negative.

Hope you get the answers you need. Could you supplement with the sublingual B12 lozenges (that absorb through your gums) when feeling low prior to next injections?

BI

Some Drs will happily let you have earlier injections.....not all. I have pins & needles in my arms and face, so dizzy all the time, crying with exhaustion, pains in my bones and terrible memory problems to the point I can’t spell and can’t use the right words for things from around 8 weeks after my last B12. Also very irritable & short tempered too.
I have recently scanned eBay and you can buy the ampoules - also available from oxfordbiosciences.com- and self inject. Something I am seriously considering. I also take a high strength B12 tablet on top of my injections and it doesn’t help. Speak to your dr, yours may be sympathetic and allow earlier injections.

I self inject more frequently than every three months. Look at www.b12deficiency.info for more.

KarrisWhiteOak Your doctor could increase the frequency of your jabs, though sometimes they're loath to do that. I know some people resort to getting hold of B12 and injecting themselves if GP isn't willing to.

BlackInk The intrinsic factor test is very unreliable, do you have any other possible causes for being so low? (Any digestive problems, Crohn's, coeliac etc?) What's the doc's plan after your loading doses?

There's a good support group on Facebook that is very useful for info on (new beginnings B12 deficiency information) and also the Pernicious Anaemia Society is very helpful. Been looking into it myself and it seems that on the whole the Nhs don't tend to treat it as well as they should.

As well as the above,target foods rich in B12. All offal, shellfish and sardines are up there - fortunately I loved them all. It made sense to me to target specific foods along with the injections,etc. I was having.
So Google for foods rich in B12 and go for it.
Al the best.

As others say requesting increased frequency of injections I self inject every 10 weeks all prescribed and agreed by my GP.
I have a complex mix of autoimmune conditions ( as do many people) so my pins and needles never totally resolve.
My first sign that I need an injection is my restless legs restart at night, my partner tells me to inject as the duvet twitching all night is disturbing him.

Lellochip
BlackInk The intrinsic factor test is very unreliable, do you have any other possible causes for being so low? (Any digestive problems, Crohn's, coeliac etc?) What's the doc's plan after your loading doses?

No cause discovered so far... no coeliac, but various symptoms including lots of gastric ones. Dr plans to retest my B12 after 6 months to see where my levels are then.

Sorry to high-jack OP, hope you find the support you're looking for :)

Thanks for responding.

From what I’ve read/ been told b12 can no longer be absorbed through my stomach so foods and tablets are pointless, I only found this out after getting a load of multivitamins in.
The lozenges sounds like something worth looking on to tho.

I found out in the last few months of pregnancy last year and had loading injections too.

I’m having blood tests at beginning of nov to see if it’s still low. I think it must be, as I say a week after injections it’s like a fog has lifted. I think I’ll ask for more frequent injections from doctor.

Hi there everyone,

We're moving this to Autoimmune Disorders at OP's request.

OP there's no point in doing any blood tests once you're having injections, as your results will be elevated for months after treatment. If they've already diagnosed Pernicious Anaemia, lifetime supplementation is required no matter what, so further tests are pointless.

If they test and results are high, v do not let them use that as an excuse to stop treatment.

I get the feeling I was fobbed off by the doctor a bit.
I went in same day as injection spoke to him about being depressed and angry and it’s not fair on family that I’m sick to anger etc.
He recommended i apply for CBT.
Saw him again two weeks after that, B12 has kicked in and feel fine. I’ve pointed this out to him asked for more information about it and I’ve been sent away to goggle Pernicious Anaemia.
Feel a bit lost about all really. Seems like it’s something that has a big effect on me and I’ve got little info. So I do appreciate any info or story’s and advice. Thank you.

B12 deficiency can definitely affect your mood. My GP literally thrust a prescription for anti-depressants into my hand.

I was so frustrated I applied to see my blood tests results online and that's when I saw that (among other things) in the past year my B12 had fallen from 166ng/L to 161 to 122 (range is 180 to 1000). They'd told me back in January that my B12 was 'on the low side' and just to supplement with OTC B12, which I had been doing at 500ug a day for several months, yet my B12 was still falling.

I've got various 'red flag' symptoms for B12 deficiency (gastric and neurological) but they're still taking a wait and see approach after I've had the loading doses.

Can I ask how you found out that you're unable to absorb B12 through your gut?

If you look at healthunlocked.com there’s a pernicious anaemia forum on there with some very knowledgeable posters.

If you're having neuro symptoms then the Nhs guidelines say you should be getting jabs every other day until no further improvement. Getting them to agree to this is another matter. I've attached a copy of the guide my GP followed. The actual reference range numbers will vary slightly depending on area and different labs etc, but the protocol should be the same

Do you know where I can find that chart online Lellochip?
I've read that info but not seen it laid out so clearly anywhere on the NHS or NICE sites.

Thank you :)

Just quick @blackink between kids being kids and I’ll respond better this evening....

The underlying cause of Pernicious Anaemia is the inability to absorb Vitamin B12 from food and consequently the patient will be deficient in B12.
From

pernicious-anaemia-society.org/symptoms/

But I’m not sure if thats what I have even though he pointed to it on the nhs website. Seems baffling.

It's better to get sublingual (dissolve under the tongue) B12 tablets to bypass the stomach absorption issue.

BlackInk onlinelibrary.wiley.com/doi/full/10.1111/bjh.12959 this document containing a similar chart, as well as loss of other info

Thank you!

If your brave you can self inject
You can buy vitamin B12 from pharmacies in Germany and self inject
It’s what I do and lots of others do it as well
It’s arounf 7.50 euros for 10ampules plus P& P but it’s worth buying In bulk as P&P is the same

On the health unlocked forum there is loads of advice on how to self inject and where to buy the correct needles and syringes needed ( what size) and where to buy B12
It’s made a massive difference to me

I’m another one with Vit B12 deficiency (although I’m don’t have PA according to my IF test).

My original test came back in the 90s so I was on my knees with symptoms galore and it took me the best part of a year to get back to some semblance of normal. Have they tested your folate? I had to take a shedload of folic acid as well for the first few months.

I’m on an every 8 week regime but my seriously flagging for at least half of that time but they won’t reduce it further without haematology input, which is never forthcoming.

I am pretty brave but I couldn’t SI and my husband is shocking with needles.

I’m having an OP soon and even getting people to agree that I need more B12 afterwards is a complete pain. Nobody really understands how dreadful it makes you feel.

Sorry OP, going back to your original question. I get dreadful neuro symptoms - can’t string sentences together, get the wrong words for things constantly etc. As well as crippling fatigue and mouth ulcers.

It was my dentist that pointed me in the right direction actually - he said he was fairly certain I was b12 deficient from my tongue (I had other symptoms at the time too!) and he was bang on.

I self inject B12 Methylcobalamin.
Go to HealthUnlocked Pernicious Anaemia thread.
It gives advice on there how to source B12 for self injection**.

Sometimes we have to take charge of our own health...too many GPs are working within strict NHS constraints and not willing to risk treating patients outside of NICE guidelines.

**This is waaaay way better than suffering for months of yo-yo-ing between extreme fatigue and a few weeks of feeling great.

Regular B12 injections can be everyday or a couple of times a week.
One indication that you are taking too much is that your urine will turn pink!...so just cut back.

You can use Medichecks for blood test rather than wait for GP test.
A result in in the top quarter is what you should be aiming for anyway loads of info on HealthUnlocked on how to take back control of your life with B12 deficiency.

Thank you.
If sfter blood tests in November my go won’t do 8 weeks instead of 12 I may have to consider self injections. Not sure I’m brave enough tho the one the nurse give really hurt.

Sure he said my folic levels were fine.

I’m finding I’m so grumpy towards the end and I lose all interest in pretty much anything. I’ve had a few pins and needles - which I though may have been beginning of migraines.

As the hair lose is really upsetting and gross for rest of the house, it’s everywhere!

I also seem to get no answers on why I’ve suddenly got this.

Hi, another PA here. I recognize all your symptoms, though these days I tend to feel very flat and immensely tired.

As I understand it, PA tends to start to be noticed in your late 40s ( I was convinced I was peri menopausal.). Like most auto immune illnesses, the causes aren't clearly understood. It does tend to run in families, my sister was diagnosed after I recognized some of her symptoms ( sore mouth and tongue) from the literature i was given when I was diagnosed 20 years ago.

A retired elderly nurse told me that before the purpose of B12 was known, people would be told to eat raw liver to cure their anemia. As she said, it didn't work and it was nasty. Good luck