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.

Davina
She's on a lot of meds including steroids and immunos for her AI disorder so that had affected both red and white b cells - she's down to full bloods being taken every three months now (it used to be weekly so she's not complaining!!)

I think steroids can reduce B12 Why did they say that the injections weren't necessary any more? If it was down to her blood results then given that she'll have been supplementing at the time, they won't have been a true reading. Also it doesn't say how well the B12 is actually being used in her body

Yes steroids deplete B12.

They shouldn't stop injections - they are for life in the majority of cases. Guidelines say no further testing of B12 when you are on injections!

Sometimes early in treatment, the headaches are caused by low folate. Try taking your daily 5mg folic acid at least an hour before our jab. It won't harm to take 10mg some days (it's also water soluble). There is an increased demand on your folate especially in the first 4 months of treatment when you are making a lot of new red cells.

I spoke too soon, terrible dizziness and headache hit around lunch time, DP had to come home early. So up and down Glad your dd is ok Davina.

YNK does injecting daily keep your symptoms at bay?

I inject daily and am pretty good about 80% of the time. I get tired out easily still and can't manage much jn the way of physical exercise but it's a vast improvement on what I was like 6 months ago when I would just fall asleep in the middle of a sentence and couldn't walk upstairs without gasping for breath.

Sadly not symptom free although much better than when I was diagnosed.
I was misdiagnosed for 30 years and I'm still heavily symptomatic after over a year of daily jabs.
I need crutches to walk and I have a very bad cognitive deficit and I'm easily confused.
I had an MRI for a back injury which showed hyper-intensities which is an indicator of SACD (sub acute combined degeneration of the cord).
I need further testing to see if my symptoms are permanent. I'm not minded to rush this as I still have some hope of further recovery. Any stress or exercise sets me back a long way.

Thanks for that YNK, I'll try that tomorrow before jab no 4 And a banana afterwards for potassium.

My headache finally cleared about tea time for the first time since Tuesday night, so hoping that it will be better from now on.

As far as I know there is no plan for me to have any more injections after these first loading doses. They are testing me for coeliacs and some other stuff. If it comes back as positive will I need further injections do you know? Or will I be able to manage it through diet/tablet supplementation?

Sorry you're feeling rubbish Saga Hope your DP is looking after you.

No plans for further injections? Are they mad? Of course you need injections, they are for life!
As for testing, you should have had antibody tests for IF and PC (intrinsic factor and parietal cells) BEFORE you got the loading dose!
Remember, no further testing of B12 unless you are 4 months clear of all B12 supplements.
You need to join the facebook group and have admin there analyse your blood test to make sure you are getting the correct cofactors and to get advice in case doctors try and stop your jabs. It's very important you have backup if this happens.
www.facebook.com/groups/PAB12DSupportGroup/

I am having instrinsic (?) blood tests to see if I have pernicious anaemia.

3 months ago my b12 was 148, I had six loading doses at the end of June and it's now 430. Is this about right? I get better for a few weeks but now feel worse.

Also my folic acid and ferritin levels are low apparently but I only found that out today.

I have headaches, breathlessness, sore tongue, fatigue, aches and pains, bad IBS and just feel awful.

This year has been shit for numerous reasons including bereavement and I just want to feel normal.

Oh and I forgot one of my worst symptoms and it stops me sleeping - burning feet.

As far as I know, I'm not being tested for IF at this stage. She has re-run the B12, folate and ferritin (labs apparently won't redo vitamin D before 6 months), but I know it will be skewed because I was supplementing with a sublingual 1000mg methyl tablet for about a month. I was desperate! I am lucky in that my main symptoms are fatigue and IBS, with mild pins and needles and brain fog, but it's serious enough that I haven't been able to work for 5 months now. Results should be back next week and I'm due to see her on Friday to assess how I am and figure out what the next part of the plan is.

I know she's looking at putting me on an elimination diet to identify any allergies etc, but other than that, I'm not sure. I guess it depends on the test results She is very keen to get me well again, having gone through CFS herself (which is what the other 5 doctors were insisting I had), so it may be that continued jabs are in her plan, we've just not got there yet. I've only had one appointment with her so far, and we talked about so much that we overran a double appointment

I am on that FB group actually, but I've been a bit reluctant to post on it as I saw in the rules that you should keep your questions to only one place, and I'm using several places at the moment (although mainly just reading to be fair). Cofactors should be ok I think. I take vitamin D, K2-MK7, and Epsom salt baths 3 times a week, and a vitamin b complex. My folate level was ok, so I've not been supplementing that in addition to the b complex at this stage. I know ferritin was low (22), but I've had a month of taking ferrous sulphate, which I'm off now until I get the next blood tests through. The last ones I had were middle of May.

That sounds awful Haudyer

I'm not sure, but that sounds really low to me - my doctor has prescribed 5 loading shots and is expecting mine to be up near 2000! Sounds like you definitely need to go back for more.

Davina, they only say to post in one place so you can keep a record of your symptoms by bringing up your previous posts with a search. You know if you are a member that the admin there are the experts. Your doctor is doing you no favours by not prescribing folic acid. Ok is not optimal, which is what you need to make new red cells. print off your blood results and admin in the group will tell you how much folic acid you need. Meantime get the supermarket 400mcg folic acid and take 12 of those a day (5mg).
Don't gamble with your health while your doctor catches up with her learning - she's obviously not knowledgeable enough, no matter how concerned she seems.
This illness is not something to take lightly. Pernicious means deadly. Doctors knew this 40y ago before injectable cobalamin was isolated. Back then the life expectancy following diagnosis was 3 years!
This illness can cripple or kill you!

B12 Test results while on treatment are irrelevant.

Ah ok - I read it to say that there were many times that they'd had to undo incorrect knowledge gained elsewhere, so they didn't want people posting the same questions in numerous places. It read a bit aloof to me and put me off a bit if I'm honest

I will do - I've been taking folic acid in my b complex for months now, so I'm hoping the next lot of results will show an increase in that

I was diagnosed b12 deficient last October after blood tests (I'd gone gp initially as found blood in stool and had constant diarrhoea). I was prescribed tablets for 2 months but my levels hardly rose so started on injections in Dec 2015. At the time I didn't think I had symptoms but after my 6 loading doses I realised that a lot of aches and pains etc went away for a few weeks!
I'm now having injections every 8 weeks and have a diagnosis of pernicious anemia. I have nerve damage in my hands which is being treated using setraline at the moment and I have severe anxiety which is being treated with propanalol.
I'm taking 5mg folic acid and I also take a calcium/vit D and iron tablet too.
Main symptoms include
Tiredness
Restless leg
Nerve pain in hands
Heel pain
Breathlessness

I've considered buying b12 online and injecting myself but it's scary!!!!

Don't be scared Bonkers, you will find it a lot more easy than you imagine and it really takes the pressure off.
Good luck

bonkerz, the nerve damage should be being treated by alternate day b12 injections - that's what the nhs guidelines themselves recommend for b12 deficiency with neurological involvement.
I was adamant I didn't want to self-inject and tried to go through the gps, but found they just wouldn't listen. The security it gives you, having your own source of b12 is great.

There's been a few reports on b12 treatment recently in the news, the PA society and people in the support group are campaigning hard to get the issue more recognition.

I have CFS, FM, IBS & hypermobility; I also have B12, D Zinc & Folate deficiency

I have 3 monthly B12 injections I take B12 spray, Zinc (gluconate) & D spray supplements; I can't find a folate/iron that I can tolerate (yet - I live in hope)

I am still fairly ill but so much better than 2 yrs ago

Where is best to buy needles and b12? So many questions though like how much and how often etc.
After my jab I tend to feel ok for about 2-3 weeks.

If you join the FB support group linked above, they have lists of good suppliers. I get my b12 from Germany and needles from Amazon!

Oh sorry, as for how much - it's a 1ml dose, the same as you get at the GP. And how often is really a question of trial and error.

Just jumping on as on B12 injections every other day and they have saved my life. I was ill for 4 years, reduced to using a mobility scooter, just in such a shocking state and now I'm so comparatively normal.

I don't intend to reduce my frequency of injections as I can feel the difference by the end of 48 hours.

How are you feeling now Saga? Better I hope.

Bonkerz - I'm with you on the scared of self injecting! It does sound very simple though, and judging from the amount of people doing so due to lack of support, and getting the huge health benefits from it, it sounds like something worth doing. I think I need to give my new doctor a chance before I take that step for me, but I won't wait too long. I need to get the results of these latest bloods and really find out what her intended plan for the future is.

I'm exhausted all the time at the moment as my sleep patterns are so erratic - anywhere between 5-12 hours sleep a night, with no real pattern I've a few days clear now until my final jab on Wednesday, so I'm hoping things will settle back down soon.

If anyone is wondering there is a fab Facebook group - Pernicious Anaemia / B12 deficiency Support Group. Lots of technical information, supply info and a list of people willing to travel to help you learn to self inject.