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beca74 profile image
21 Replies

Starting b12 injections on monday not been given any info just turn up get injection . Having 3 injections a week for 6 weeks to start

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beca74 profile image
beca74
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21 Replies
Nackapan profile image
Nackapan

Thars a generous loading dose. Usually 6 over 2 weeks.

You dont mention b12 level or your symptoms.

Has your folate iron and vit d thyroid been tested too. ?

Hope it goes well

beca74 profile image
beca74 in reply toNackapan

The doctors receptionist rang late yesterday couldn't give me any info they did a load of blood tests all i know is that i have pernicious anemia

beca74 profile image
beca74 in reply tobeca74

but i have terrible shortness of breath, tingling in feet and hands and migraines

Nackapan profile image
Nackapan in reply tobeca74

Yes sounds very familiar. I'd never had a migraine before.. this forum is very supportive with lots of people giving helpful advice. It's been so so helpful to me. Hooe you find it useful too.

You know you are not alone . It's not well understood generally by medics.

Nackapan profile image
Nackapan in reply tobeca74

I would get a copy of all your blood results.

Talk through them with a doctor. Always good to have. The normal ranges are on the print off so you can understand them. Sometimes something deemed normai can just scrape into the 'normai' but could be adding to symptoms. It's quite common to have other deficiencies if tour ate not able to absorb b12.

There alot to take in. I imagine you mustve tested positive to an intrinsic factor antybody test. This picks up 5o % of those with PA. So you will need injections for life . Like most of us on here.

I hope the injections give you some relief. It does take time.

clivealive profile image
clivealiveForum Support

Hi beca74 are you in the U.K?

beca74 profile image
beca74 in reply toclivealive

Yes the uk

clivealive profile image
clivealiveForum Support in reply tobeca74

Hi beca74

Your treatment regime just seemed a bit strange for this country as others have said.

It may be that you will need to supplement with folic acid once the B12 injections start so please ask your doctor about that.

I am not a medically trained person but I've had P.A. for over 48 years and I'm still "clivealive"

I hope everything goes well for you

beca74 profile image
beca74 in reply toclivealive

I asked and he said no i thought I'd need it too . Ive asked for a second opinion and another dr is ringing me later

Narwhal10 profile image
Narwhal10

Hi beca74

Yes as Nackapan said ask for results printed which they will charge for. (I paid £5)

So get print outs for Ferritin, folate, B12, vitamin B12, haemoglobin, did you have a thyroid tests as well. Intrinsic Factor Autoantibody. Some one else can add if needs be.

Yes, I was really short of breath, pins and needles, awful vertigo.

Are you okay getting there ? Are you ok with needles ? X

helvella profile image
helvella in reply toNarwhal10

It is no longer legal for GP surgeries to charge for a simple "latest results" print.

GDPR and Data Protection Act 2018 apply.

Some guidance available here:

ico.org.uk/your-data-matter...

Narwhal10 profile image
Narwhal10 in reply tohelvella

Sorry for giving wrong information. So why did my surgery do that then 🤔

helvella profile image
helvella in reply toNarwhal10

If they charged since early 2018, they would appear to have broken the law.

All too many surgeries used to charge - all too often around £10 (sometimes per page). This was clearly identified as unacceptable. Even if a charge were allowed, making a profit - using it as a revenue stream - is wholly reprehensible.

Sorry if I came across as annoyed - it was more a lament that yet another person was charged when they (probably) shouldn't have been.

Narwhal10 profile image
Narwhal10 in reply tohelvella

Gosh no I saw no emotion in your factual and accurate response. I just felt a dipstick for giving the wrong information to someone. The illness is hard enough and it’s not empowering someone if you are misinforming people as I did.

Nackapan profile image
Nackapan in reply toNarwhal10

Mine used to charge £2 then stopped asking. Not up to date . At least you know not to pay next time!

Lurcher-lady profile image
Lurcher-lady in reply toNarwhal10

You shouldn’t have to pay, those are legally yours 😉

beca74 profile image
beca74

thank you all

Narwhal10 profile image
Narwhal10

Wishing you well soon.

Emmers5 profile image
Emmers5

Good luck! You will feel better soon. Interesting about the printout issue. In the US most doctors and hospitals use MyChart or similar online systems. I can access all of my test results since the system started about 10 years ago online. Includes all visits and post visit summaries and tests and prescriptions and correspondence with dr. I feel spoiled!

helvella profile image
helvella in reply toEmmers5

It is getting there - at least in England. (I am not up to date with Wales, Scotland and Northern Ireland). Some do have full access.

MoKayD profile image
MoKayD in reply toEmmers5

That's right. I can go back and look at all of my test results ever since they moved to the online system. It would be cool if they would input my earlier test results but that would involve a lot of manual inputting.

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