Pernicious Anaemia is the worst

[Sea-blue]

Hi Newbie here. Was diagnosed with PA this Sept gone after years of weird symptoms . Have congenital heart disease too and after having complex heart surgery two years ago my health got critical. I have reduced kidney function too. Yikes. Anyone else got similar health issues. Am being treated for PA but fed up with having all of it at the same time. The PA has caused me the most problems tbh even with having heart disease . At least my cardiac surgery relieved most of my cardiac symptoms. All my PA symptoms have improved but are still there after many injections . I presume they are staying put.

[Nackapan]

Not necessarily. It can take some time to get relief ftom b12 deficiency symptoms

If it was masked by your other health conditions and been going on undetected for ages.?

Or it was some of the reason undiagnosed it caused you othef problems. ?

It's probably been going on for years lije so many of us for various reasons.

I'm 4 years in and still making improvements.

We all need different regimes of b12 injections.

Healing is not in a linear line.

Do make sure ferritin ,iron,vit D folate were tested too.

Keep a paper copy of results.

It's common to have other absorbtion problems alongside.

Or other autoimmune conditions like thyroid.

Most if us experiment with adjusting our diets .Or better ways to combine foods to help us digest them ,absorb them as our bodies have changed.

I didn't have coffee or alcohol for over 3 years.

I enjoyed both before ill.

Just writing all this to give you hope of more improvements for your quality of life.

Plenty to read on here.

PAS

Gives lots of information.

Membership affordable.

Keep us posted on how you progress

[Sea-blue in reply to Nackapan]

Thankyou for your reply Nackapan . Much appreciated . Am a member of PAS now. Am on EOD SI with all bits needed inc folate and do keep copies of all test results.

[Wwwdot in reply to Sea-blue]

early days - keep a journal of symptoms. I was only diagnosed in October last year and the improvement is slow but it’s there! I can often only see the improvement when I look back through my journal. It buoys me up in bad days.

[Sea-blue in reply to Wwwdot]

Thankyou . Yes a journal is a great idea.

[Sleepybunny]

Hi,

I'm sure there's hope for further improvement.

I improved for at least 8 years running once I got adequate B12 treatment but I need far more B12 than NHS will give.

How many loading injections did you get at the start of treatment?

How often do you get B12 injections now?

I've assumed you're in UK. It's helpful to know which country you are in as patterns of treatment vary between countries, type of B12 used can also vary.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 film, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Sea-blue in reply to Sleepybunny]

Hi Sleepybunny, Thanks for replying. I’m based in the UK. Two years ago I had 5 initial loading doses and then 3 monthly but I did have some advice from a friend who has PA . I’ve been SI EOD since May last year. Been taking folate and the other bits you need. Early days really then . Because of my kidney function not being optimal poss stage 3 CKD I’m finding EOD making them work harder. Really appreciate all the info . I’m a member of PAS and why I found this forum.

Thankyou again for all the links very much appreciated . Will take a look. Just can’t help feeling overwhelmed at times because of my other health issues. But I’m resilient and will keep on keeping on