New B12 Deficiency sufferer - Pernicious Anaemi...

Pernicious Anaemia Society

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New B12 Deficiency sufferer

BellaPUG profile image
17 Replies

I was diagnosed with a B12 Deficiency with a level of 145 and suspected Pernicious Anaemia.

I had my first loading dose yesterday and apart from the disappearance of my brain fog it has given me a headache and a general feeling of malaise? Is this normal?

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BellaPUG profile image
BellaPUG
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17 Replies
Seth12345 profile image
Seth12345

Yes this is "normal". At least it was for me and others.

You'll see other posts here about getting "worse before getting better"..

I had 3 symptoms initially and after injecting like 20.. some went away quickly, others lingered for a while.. I'm 4 months in post initial injection and I'm starting to turn the corner in the right direction..

The damage is slow to repair.. Recovery is slow.. Be patient and stay as calm as you can through the healing.

in reply toSeth12345

Good advice Seth same here initially you feel so much better then as the healing starts you can even get new symtoms .this deficiency really takes its toll on people and it can take a long time to feel the benefits of treatment but yes it’s all part of the process.write down your worst symptoms and you’ll see as time goes on the small changes that you can tick off because we do forget an awful lot of it.Good luck x

BellaPUG profile image
BellaPUG

Yes, it was, a, serum test. I have also lost my appetite a bit which is rare for me. I am not terribly nauseous but just feel a bit off in general. I have another shit today and I am slightly dreading it now.

Jillymo profile image
Jillymo in reply toBellaPUG

I had my first loading dose on Monday I felt a little worse for weat after and a little nauseous. I was supposed to have another injection on Monday but the nurse never turned up ! She is supposed to be coming out today - we shall see but I shall be damned annoyed if she does not show. Wish I could loose my appetite I eat like a horse.

Lets hope this stuff kicks in soon and we stride to better health.

BellaPUG profile image
BellaPUG in reply toJillymo

Yes fingers crossed she turns up this time and we both start to feel better. I have my second dose at lunchtime.

The Dr never told me what to expect, just that I needed injections and to turn up for them!

Please let me know how you get on.

Jillymo profile image
Jillymo in reply toBellaPUG

Are you being give a loading dose of six injections being given every other day ? I was damned annoyed after waiting around all day and the nurse didn't show up. Grrrr

BellaPUG profile image
BellaPUG in reply toJillymo

Yes, I have the 6 loading doses every other day. Work gave me 2 weeks off thankfully otherwise I would have struggled. The nurse should of let you know she wasn't coming. I would have been annoyed too. I have to go to the surgery for mine.

Jillymo profile image
Jillymo in reply toBellaPUG

I was spitting fire after waiting around all day frightened to pass wind in case I missed her. I agree I should have received a call if not coming so have emailed them. Another thing that is annoying is they arrive with mask, gloves and apron but take them off in my home and expect me o dispose of them - I refused and told the nurse to take her stuff off outside and take it with her.

She also didn't carry a sharp box and left the syringe with me requesting I disposed of it in a tin and put in my household bin !

Jillymo profile image
Jillymo

Shortly after the first on I felt a little nauseous and off balance Mind you I feel like that most days, no change in my appetite.

I was told they would be given every other day then at 3mnthly intervals. I have other serious ailments going on so cant get to the surgery. District nurses call to give them - or should I say supposed to when they turn up.

BellaPUG profile image
BellaPUG in reply toJillymo

Bless you. I feel a bit off. I had a headache. No appetite and more achey than normal. I hope she turns up this time.

Mine are also going to be 3 monthly after this.

Jillymo profile image
Jillymo in reply toBellaPUG

Not one but two nurses turned up !!!

Unlike the one that came on Friday they took my BP, Sats and asked if I had any wounds or sores. They were about to take masks etc off when I asked them to do it outside and take it with them. 😷👍

This time I were left with a folder and a sharp box.....oh joy. 😘

BellaPUG profile image
BellaPUG in reply toJillymo

I suppose 2 turning up makes up for the one that didn't turn up 😂. It sounds more successful this time!

Jillymo profile image
Jillymo in reply toBellaPUG

Do they check your BP when they call and skin for lesions ? I couldn't help but wonder why when they coming to give me B12 shots.

Two is better than one but they were going to leave me with two lots of gloves, aprons and masks until I stopped them and told them to remove them outside and take it with them.

BellaPUG profile image
BellaPUG

I don't feel sick as such just a bit of an unsettled stomach, a headache and feel really achey. My appetite has completely disappeared. I have lost 3lbs since Monday.

Jillymo profile image
Jillymo in reply toBellaPUG

Oh I wish I could loose some weight - you have brightened my day.

Lets hope she turns up and takes all her protective wear with her - I object to them leaving it in my home.

Here's to better health. 🍻 🍺 cheer's

Jillymo profile image
Jillymo

I would insist tell them you are not well enough to go to the surgery.

I hope you feel better soon. 😘

BellaPUG profile image
BellaPUG in reply toJillymo

I can make it to the surgery and back. I just can't do much else which is disappointing as I have lots to do!

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