Source of PA

[Casurvior]

My question is: Is your PA genetic, environmental, or other medical condition? Has a different source caused other illness ? I have a genetic source for PA and was diagnosed at 29 after severe dehydration began shutting down my organs and triggered latent illness. . I’m now 66 and have numerous auto immune disorders, and ability to live any type of normal life has long disappeared. I take 2 cc / 2x week. Thank you for any insight!

[Sleepybunny]

Hi,

Welcome to the forum.

I have never found a definitive cause for my B12 deficiency issues. I suspect PA is possible although PA tests were negative but also think that I might have some genetic problem in how my body metabolises B12.

I'm in UK.

In UK, the term Pernicious Anaemia is normally used for an autoimmune condition. See link below.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society) is based in Wales, UK.

It has overseas members.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There are two PAS support groups in USA.

pernicious-anaemia-society....

Other B12 websites

B12info.com

b12info.com/

Run by a UK campaigner on B12 deficiency issues.

B12d.org (UK charity)

b12d.org/

B12d.org organises interesting online talks.

b12d.org/event/

The B12 Society (UK charity)

theb12society.com/

B12 Awareness (US website)

b12awareness.org/

Set up by Sally Pacholok, US campaigner on B12 deficiency issues.

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/english/

Two B12 books I found useful

1) What you need to know about Pernicious Anaemia and Vitamin B12 deficiency

by Martyn Hooper, founder of Pernicious Anaemia Society.

2) Could it be B12?

by Sally Pacholok and J.J Stuart (US authors)

Films and videos about PA and B12 deficiency

b12info.com/films/

pernicious-anaemia-society....

Help for doctors

1) PAS have a page for health professionals.

Some info may be specific to UK.

pernicious-anaemia-society....

Health professionals from around the world can join at no charge as Healthcare Affiliate members.

2) Club B12 is a group of researchers and doctors who are looking into B12.

club-12.org/

They have regular zoom meetings and have hosted conferences.

3) Search online for "B12 deficiency Wolffenbuttel" this should show several articles by B. Wolffenbuttel. including one for Mayo Clinic in US.

He wrote a blog post for PAS. See link below.

pernicious-anaemia-society....

In my personal opinion he's one of the few doctors who understands B12 deficiency.

I'm not medically trained.

[Casurvior in reply to Sleepybunny]

Thank you for the detailed information. I have know PAS long before anything established in USA. It’s been of great help when nothing was being studied or published in US as it is a “Cinderella” illness. In US if it’s not going to make money it’s not important. My family lineage is Scottish and my great aunt died at 14 of PA in 1902, long before understanding of B12. I started showing PA symptoms at 13 we when my hair started turning grey., but wasn’t diagnosed at 29 (1989) as I was dying from it. It was diagnosed by my dentist who was also a medical diagnostician, otherwise I would have died misdiagnosed as depression. I was still on my own to figure out by reading medical journals and publications where ever I could find them. Very grateful for PAS UK!

[GoneWithTheWind1972 in reply to Casurvior]

I suspect PA is genetic with a high probability of environmental causes. Currently in the process of major familial concerns as my mother also has recently been diagnosed with PA and two of her sisters have recently passed away with dementia and another sister has early dementia and another uncle has also.. She’s one of six. Another uncle has been given three monthly B12 injections. I believe somehow there’s a connection with B12 being genetic as well as being triggered by environmental factors. If it’s somehow related to dementia also, I’m unable to connect the dots. Research is ongoing and I’m very curious to find out more on the genetics and environmental factors to PA.

[Casurvior in reply to GoneWithTheWind1972]

I was fortunate that our dentist was a family friend who knew me well. He immediately recognized something was wrong from my outer physical changes, so sat down and asked me what was going on. Before he came to US he had been a medical diagnostician in Russia, but the mouth shows many signs of PA, swollen discolored tongue for instance, then all other physical signs, prematurely grey hair pale skin, lethargy etc. Later I was talking to another dentist who told me it wasn’t surprising, dentists often see different forms of cancer and other illnesses before doctors, if they are observant and care about the health of their patients.

[Sleepybunny in reply to Casurvior]

"It was diagnosed by my dentist"

Interesting that it was finally picked up by your dentist.

I started a thread recently about other health professionals who might spot B12 deficiency. Maybe you could add to that if you have time.

Do other Health Professionals know about PA/B12 deficiency?

healthunlocked.com/pasoc/po...

I'm sorry to read that it wasn't picked up when your hair started to go grey at such a young age....I always thought that was a classic sign of B12 deficiency. Hair loss too....I lost hair from all over. I might start a thread that mentions hairdressers/stylists.

[Myoldcat in reply to Casurvior]

My mother was Scottish, and 6 of my (admittedly large) clan of cousins currently have PA. I now believe my mum had it though undiagnosed, she had the classic waxy yellow skin and developed early dementia.

[traveltime]

For me, definitely structural/genetic ... alongside hypothyroid. My grandmother died from PA and myxoedema. (that's as far back as my family knowledge goes), her 3 sons def hypo, one died v young from hypo complications, other 2 hypo but also PA signs/illnesses that I don't think were ever diagnosed, then there's myself and my sister (both hypo/PA), and I can see signs in at least one of my sons, so probably 4 generations. Sad thing is doctors don't seem to think there's any intergenerational connection, or that it's important.

[Casurvior in reply to traveltime]

I’m so sorry, it clearly looks like a genetic form. As I am in US it was 1st question - did I have any family members who also diagnosed and suggested all family members be checked. There is definitely a medical understanding that there is a genetic connection especially in early onset. Hypothyroidism is a common sister disease, I have it as well along with celiac disease. and chronic fatigue. So far in my generation and next I am only diagnosed PA. Lucky me ☺️, but grateful for others health, especially my own 3 daughters.

I’m still not sure if early life PA ( before 30) or geriatric after 50, are the same or later brought on by illness or exposures. Granted symptoms might be similar as both lack VB12 but onset or co illness might be different- does anyone know any studies or information?

[traveltime]

thank you for your kind words. In reality I would love to identify the real route cause, rather than these descriptions of symptom clusters