Just been diagnosed with PA after screening for Chrones and general blood tests.
I read with interets the symptoms, of which 80% are a good fit.
For the past 5 years the NHS Dietician has been trying to sort out my stomach bloating and wheat intollerance, and am now on a low FODMAP diet. Thing is, it has helped a little but looking at some of the symptoms they are the same so I guess could be some cross over, or B!2 could have been the culprit all along. I guess only time will tell after the initial injections and a period of time.
Was just wondering if anyone experienced the same?
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philward
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Hi philward welcome to this community where there are a lot of helpful people.
I am not a medically qualified person but know that sadly many doctors are less than knowledgeable about P.A/B12 Deficiency and go hunting for every other known disease instead of testing for it.
All I can ask is do you know what your Folate level is? Vitamin B9 is essential to process the B12 and will get used up once you start on the injections.
"Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.
Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, lima beans, salmon, orange juice, avocado, and milk.
Vitamin B9 (Folic acid) University of Maryland Medical Centre "
Sorry, no idea what my Folate level is. To be honest it wasn't until I spoke to the nurse today for my first injection that she told me it was a for life medication. No info from doctor at all.
Shoud I ask the doctor my Folate level is or can I test his in some way?
Yes please philward ask your doctor to test your serum Folate level and let us know the result together with the <from - to> ranges.
Do you know how many B12 injections you are having to start with? As you have been diagnosed with P.A. your doctor should treat you as per the third (highlighted) paragraph below.
Treatment of cobalamin deficiency
"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment
"
And yes P.A. is for life and I'm amazed that your doctor omitted to tell you.
However there is life after P.A. I've had it for 45 years and I'm still "clivealive" at 75.
Please do and also point out that with P.A. after there is no further improvement with symptoms the frequency should be every two months i.e. 8 weeks - not 12.
When was that test taken philward ? Was it before you had the first injection of B12?
As you have been diagnosed with P.A. there is no need for your serum B12 level to be tested again unless it comes out low. Most likely it will come back sky high.
Your Folate is a bit low and you will need this to be at a healthy level as it will get "used up" processing the B12 you are having injected. I suggest you ask your doctor/nurse whether you need to supplement with folic acid.
I had B12D show up about 8 years ago and became gluten and dairy (casein protein) intolerant about the same time. Going totally dairy and gluten free eliminated lots of symptoms that were similar to those from B12D. Brain fog being one.
You get folate from green vegetables or folic acid supplements.
I've been following a low FODMAP diet for a couple of years for IBS. It really helps. Whenever I 'cheat' too much, my symptoms get much worse again. I'm not sure what the links are with b12d, but just wanted you to know you're not alone with your 'weird' diet I know lots of people who follow it; it can really help
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