New Pernicious Anemia diagnosis - Pernicious Anaemi...

Pernicious Anaemia Society

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New Pernicious Anemia diagnosis

Oneash profile image
Oneash
β€’13 Replies

Hi Everyone,In a sleepy state here, getting no response from my GP, my next NHS B12 injection due on 1st September.

What do you wish you'd know sooner? What can I be doing to help myself get out from under the duvet and the cat?

I can't seem to think beyond basic single tasks. Everything is so overwhelming.

How soon should I just go on to self injections?

Where do I get the best deal?

Wishing you all clear heads and energy.

πŸŒπŸ¦‹πŸŒ·

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Oneash profile image
Oneash
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13 Replies
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jade_s profile image
jade_s

Hi Oneash, welcome to the forum.

Everything I wish I knew when I first started is here : healthunlocked.com/pasoc/po... and it's a bit long, but you may find some useful info in there.

Specifically, for the next times steps, you can try writing your doctors (letters are sometimes more effective) b12deficiency.info/writing-... , and/or you could ask the PAS for help (you need to be a member) pernicious-anaemia-society....

It is also important to test folate, iron/ferritin, vit D, and possibly also get thyroid labs. As always, check with your doctor in case something else is going on.

An issue with any one of those can cause issues. Low folate can also impact how effectively B12 can do its job.

I will send you a Chat message regarding the "best deal"

Deciding to self inject is a personal decision, I don't think anyone here can you tell what to do (plus we are not medically trained and it would go against forum guidelines)

However many of us here do self inject and I haven't read of any regrets yet.

Oneash profile image
Oneashβ€’ in reply tojade_s

Thanks for the welcome, responding and sending the links. A lot to chew though. 🧠 My brain has been stolen!Do I gather there is a NICE thing to complain to? My GP practice is taking a hard line.

No doubt I'll have plenty more questions. Cheers for now 🐌🐌🐌

jade_s profile image
jade_sβ€’ in reply toOneash

You're very welcome :)

I'm not in the UK, so not well versed in all the NICE'ities there ;) Feel free to put up a new post & mention it in the title - that usually attracts more replies

Cheers :)

TroyNZ profile image
TroyNZ

There is a lot of stuff that I would have liked to have known sooner but the fact is, when everything was so overwhelming, I didn't/couldn't absorb the information anyway.

But the one thing that may have helped if I had known sooner is that you can not overdose on B12. Don't let anyone tell you otherwise.

Oneash profile image
Oneashβ€’ in reply toTroyNZ

Yes I'm finding it overwhelming, not helping that my memory is shot with it🀣😭I went to a beautician today to get extra ,as I can't wait until September. So that's reassuring that it can't be wrong. Sore arm compared to the surgery nurses. Hopefully I'll feel brighter in the morning.

Thank you for your support 🌷🐌🌷

Ghound profile image
Ghound

Hi, I'm so sorry, its horrible, isn't it ? Everyone here can sympathise.

The thing is, your body is telling you you need the duvet and the cat just now.

I wish I'd known that it can take many months, up to year sometimes, to get back to the " Land of the Living "

Oh , that info was all available on here, but because I'd been lucky and never really been ill before, somehow I thought I'd buck the trend ! πŸ™„ - Wrong ! πŸ˜†

Try to be patient and realise you have a medical condition, so it's OK to be tired and need rest.

Give yourself permission to recover at your own pace.

It's normal to feel frustrated because you want to just crack on and get things done - that's still me sometimes!

I'm trying to be more accepting, but that doesn't mean accepting sub standard treatment from health professionals!

Be polite but firm in your dealings with them.

As others have said, lots of info on this site.

I do self inject in addition to my NHS doses.

Again, lots of info here about that.

I began self injecting as soon as I realised my symptoms were returning and the frequency of NHS injections was insufficient for the needs of my body.

You'll get to know your own body, some folk may manage on the NHS regime, others self inject at varying frequencies.

We all share common features of B12 deficiency, but every one of us has individual feelings and requirements.

The main thing is, you're not alone and with treatment and time, there is light at the end of the tunnel πŸ™‚

Take good care of yourself and very best wishes xx

Oneash profile image
Oneashβ€’ in reply toGhound

Thank you for your support. It's useful to know it can take a year to settle. Having chatted with PA Soc support, I've already decided to take extra and had a beauticians dose today, out of desperation. Bit ouch! My package from Germany is ordered. I'm taking Floradix too for extra iron and B vitamins.

GP, via a receptionist's message, is stonewalling any idea of extra to the NICE guidelines. There seems to be no proactive checks on complications - I need to get my head around what I should be asking for. I think they are very short of Doctors, I've been told it's a nurse led practice! It was the nurse that diagnosed it all. I've not actually seen, or spoken to a GP πŸ™„.

Thanks again for responding, big hugs, you really helped on a tough day. πŸ¦‹πŸŒΈπŸ¦‹

Ghound profile image
Ghoundβ€’ in reply toOneash

That's kind of you to say, thanks. It shouldn't have to be such a battle with medical staff ! - so I'm glad you're taking matters into your own hands.

The process of self injection is actually quite simple once you get used to it.

It really is a matter of gaining confidence.

Don't be disheartened if sometimes you feel that an injection didn't go so well.

I'm a former nurse, and occasionally I feel I didn't do a great job ! 🀭

The reassuring thing is, it's highly unlikely that you can do yourself any harm .

Good luck and all the very best xx

Wwwdot profile image
Wwwdot

Great post!

I am still in bed as my duvet was calling today. But donkeys calling for their breakfast now!

Great advice but it is hard to rest!

πŸ€—πŸ€—πŸ€—

Ghound profile image
Ghoundβ€’ in reply toWwwdot

If you have time and are able, please, please post a photo of your donkeys! πŸ™‚β€I think it's relevant to this forum because they would really cheer everyone up !!

Best wishes and love to the donkeys and your other feathered and four legged friends xx

Wwwdot profile image
Wwwdot

Donkeys Oaty and Rosie. Don key Oaty ?? Get it?? πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

Donks
MorningMist profile image
MorningMistβ€’ in reply toWwwdot

How lovely they are!

Ghound profile image
Ghoundβ€’ in reply toWwwdot

Awwww 😊 Thank you !They're gorgeous !!!😍 and I love their names 😁πŸ₯°

Sorry for taking so long to reply, but seeing your beautiful donkeys has really made my day ! 😘

Thanks again and very best wishes xx

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