Need help

[Courts12]

Hi i was disgosed with PA at 17years old iv been havin injections every 3 months since and im 26 now .. was wondering do they have to give me regular check ups and blood test to see how its working on me ? Iv been scared to say anything to anyone .. iv been havin stomach pain about 3/4 times a month.. sometimes its that bad i cant even walk as its feels like someone stabbing me in the cervix .. havin As its states that someone with PA are higher risk off stomach cancer ? I also get this sharp shooting pain that last for 3 mins under my armpit only got it twice this month ? Also Been going bed and wakin up feeling like im going to faint in my sleep .. and waking up feelin really sick and feeling my heart racing . please can someone help os this nornal for someone with PA?

[wedgewood]

You probably need more regular B12 injections . I certainly had stomach pains, heart racing and nausea ( and other symptoms ) before I started treatment . P.A patients have low or no stomach acid which causes stomach problems .

Ask your doctor to let you have 2 monthly injections. Take a probiotic or eat probiotic food ( real yoghurt or kefir .) Eat smaller meals more often . An acidic drink with protein meals Diluted Apple cider vinegar or tablet can help . If you can’t get an extra B12 injection., I woukd suggest self -injecting. On this forum we are all obliged to do this to keep well. You can find out how to do this on this forum if you need to .

[Sleepybunny]

Hi,

Welcome to forum.

Sorry for short reply, struggling to type.

Some links I post may have details that could be upsetting.

Have you considered joining PAS and talking to them?

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There is a PAS members' helpline and lots of useful leaflets.

pernicious-anaemia-society....

pernicious-anaemia-society....

There may be a PAS support group in your area of UK.

pernicious-anaemia-society....

B12info.com is a website run by a UK campaigner on B12 deficiency issues

b12info.com/

When you have the time and energy, try to read these documents

New NICE B12 deficiency guideline - published March 2024

I have reservations about this guideline.

nice.org.uk/guidance/ng239

NICE CKS (Clinical Knowledge Summary) Anaemia - B12 and Folate deficiency

Some of guidance in this document conflicts with guidance in new NICE guideline.

cks.nice.org.uk/topics/anae...

BSH Cobalamin and Folate guideline - published 2014

b-s-h.org.uk/guidelines/gui...

Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.

Unhappy with treatment?

How to write letters to GP about B12 deficiency.

b12info.com/writing-to-your...

Thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

See also pinned forum posts.

Many UK forum members struggle to get adequate treatment.

Some resort to treating themselves eg with high dose oral B12 (1000mcg or higher) but this doesn't work for some.

Some get extra B12 injections from private GP or beauty salon (expensive).

Some as a last resort turn to self injection (SI).

I'm not medically trained.

[Hockey_player in reply to Sleepybunny]

It's awesome that you and others give detailed advice to so many posters. It's easy to copy/paste from an older post so you do not have to retype. I click the left corner of my touchpad where I want to start copying (or left mouse button). Then move the mouse down to the end of it. The selected part turns blue. Right click on the blue stuff and select "Copy". Then position your cursor where you want the text to go, right click on your mouse and use "Paste". If you have an editor you like to use and you want to modify it before posting, paste it there. Then copy/paste it when it is complete back to the forum. Best wishes! I hope you get over your typing struggles.

[Ryaan]

Hi

No tests will show ‘how’ the B12 is working on you (what effects it’s been having on you). Blood test for for B12 will only show what levels are in your blood and will most likely show high for anyone having injections. 3 monthly injections may not be enough and you most likely need more frequent injections depending on how low your B12 was and how long it’s been low for.

To work out frequency of injections you have to go by your symptoms, how long it takes for your symptoms to return, for example my symptoms start with tingling and pins and needles in the hands and arms after 7–10 days of injection so I inject weekly as I know I need an injection. It’s all trial and error to see what frequency of injections you need to keep symptoms away. Most of us on here self inject weekly or fortnightly, some even much more often.

The stomach pains and other pains you have, you have to get checked out without mentioning that it’s B12 related. Tell your GP and they can get scans done or other tests they think are needed in hospital to see why you have the pains, but in my experience if you say it’s B12 related they won’t listen to you. Just mention sharp cervix pains and sharp under arm pains.

Feeling sick, feeling faint and heart racing can be due to more frequent B12 injections needed. It can also be low Iron and Folate levels, which also give you a feeling of air hunger (it feels like there’s not enough oxygen in your body) and you need to take deep breaths. Low blood pressure can also make you feel sick. Also best to get thyroid tested in your blood tests and get a full blood test to see if you have anything else lacking. If you tell your GP your symptoms they should do appropriate blood tests according to that. Most people are also deficient on vitamin D3 which also makes a big difference on how you feel. According to your symptoms it’s mostly B12, Iron and Folate problems as all 3 need to be in good range and work together in carrying oxygen around the body. Vitamin D3 should also be kept at good levels as not enough sun here.

You may have to consider self injecting, buying B12 from online German pharmacies as most GPs don’t know much about B12, or what the right treatment is, they will go by 12 weekly or 8 weekly injections and say B12 is toxic when it isn’t.