Anyone else with Pernicious Anaemia?

[Justlovingbeingamum]

I’m a new mumsnetter with a LO under 1, and I have Pernicious Anaemia. An absolutely terrible condition to have 😭 I’m 30 and have been battling constantly - approx 10 years - to have more frequent injections due to pins and needles/periods of numbness in my left hand.
Currently have injections 10 weekly but GP wont entertain the idea of more frequent injections.

Family history of PA, hypothyroidism and heart problems so can’t wait to see how things go as I age 😂🙈

Any other PA warriors on here? How do you cope with babies on a bad day!? Xx

Try the folks here healthunlocked.com/pasoc
They are very knowledgeable on pernacious anaemia!

I’ve read that some people who can’t manage between injections take sublingual B12, the methyl one.
But look into it and see

I have a B12 deficiency (not sure if PA) and self-inject by buying the supplies from amazon.de. I inject every other day. The doctors know but can't prescribe me more because, in the words of my doc, they are a government organisation with rules. If I reduce the frequency (I try occasionally) I get worse again.

There is a great FB group called Pernicious Anaemia / B12 Deficiency Support that I use.

I have PA and, like building, I also self inject using supplies from Germany. GPS don’t want to know about the benefits of increasing frequency. It’s also important to take folic acid as well in conjunction with the b12.

PA sufferer here too. I also self inject and have done for just over a year now. I vary on how often based on my symptoms. Currently I'm coping on one a week. Sometimes I need 3!

Interesting. My mum had it (pernicious anemia) in combination with thrombocytopenia, Chron's, ulcerous colitis, eczema, asthma, multiple food allergies and pollen and animal allergies, thyroid and rheumatoid issues plus heart problems (angina pectoris). (She also smoked a lot of cigarettes and didn't eat well, lots of sugar and dairy.) It didn't end well... I've always been afraid of inheriting any or all of these and partially why I don't have children.

In any case I've suspected food allergies were involved, and someone I know had gluten intolerance didn't have to take B vitamins after treating the underlying sensitivities!