B12 Def + Porphyria possible connection!

[GracePV]

Hello Friends,

My porphyria symptoms showed up about 15 years ago when I suddenly became "allergic" to the sun. Symptoms include digestive inflammation, feelings of heat travelling up and down my legs and arms, and an emotional feeling of desperation. Since then I have pretty much kept out of the sun, which triggers my symptoms. I didn't even understand that I have this illness until about years ago.

americanscientist.org/artic...

"Acute porphyrias affect the nervous system, in part via deficiency in porphyrin-derived vitamin B12, inducing mental disorders ranging from subtle dysphoria to severe disturbances, as well as engendering pain, muscle numbness and vomiting. Acute porphyria is a term that includes three similar genetically inherited diseases: acute intermittent porphyria, hereditary coproporphyria and variegate porphyria. The development of acute symptoms can be triggered by exposures to foreign substances such as heavy metals, polyhalogenated aromatic hydrocarbons (a type of environmental pollutant) and other compounds that interfere with the porphyrin pathway."

This connection of porphyria with b12 deficiency stunned me. I just found this info today.

As you know from my other post, my B12 symptoms took much longer to emerge (2-3 years ago) Anyway that the two illnesses could be connected is quite a surprise for me. I knew that it was a mutation that caused my porphyria, and suspected it with the B12 def.

"In 1968 British physician Ida MacAlpine and her colleagues studied the medical records of 13 generations of members of King George III’s lineage spanning more than 400 years. They found biochemical evidence that the King and numerous other members of the royal line may have suffered from porphyria"

Genealogy is one of my passions and on my mothers side we are descended from King George III and many other Royals, and also Mayflower pilgrims (who maybe, I wonder, didn't just die from starvation, but perhaps from B12 deficiency and/or porphyria.) My mother also became suddenly allergic to the sun in late middle age around age 55, but her symptoms were skin rashes. I am certain she was B12 deficient and will go into this in a later post. I wonder how many of us are genetically related? (Hugs to my possible cousins here!)

Then I found another article talking about Porphyrins.

rense.com/general97/porphyr...

What I found interesting is toward the middle to end of the article it mentions zinc, and about 2 months ago I tried taking a zinc supplement and it made me very sick, extreme fatigue, malaise and panic.

Ok these are my discoveries in trying to understand both conditions B12 Def and Porphyria. I hope this can be of interest to someone here!

[Sleepybunny]

Hi, I found articles from 1950s and more recent research when I searched online for "porphyria pernicious anaemia".

[topazrat]

Very interesting. I've always had a sun allergy and once became hospitalized due to a phototoxicity reaction due to a prescribed medication. (which I should never have been given, as I had a sun allergy ☹️)

I didn't k now about the porphyria connection though. I'm off for a Google 😀

[piperatpda]

Hi Grace, thanks for the interesting comments. I have been diagnosed with Porphyria Cutanea Tarda since 1978, a genetic condition since my father and grandfather also had fragile skins. Both were methodists and did not drink, and I was told by the specialists that alcohol was not to be taken, since I was not able to metabolise alcohol, and so increased Ferratin levels which caused sensitivity to radiation, ie blisters etc in sunlight. The 'cure' was two years of treatment by blood letting (500 ml per month), done twice, ten years apart, and I have not had the Porphyria symptoms since. I have been taking metformin since 2001 for diabetes, and in 2004 insulin. Since 2017 I have been treated for PA with 3-monthly injections after the initial loading. My insulin has recently been changed to half, and coincidentally (??) I have lost nearly two stones. Do you recognise any of these symptoms? I am now 80, and reasonably active, with two more books under contract!

[Cobalt1312]

Hi GracePV, this is really interesting to me... When my primary care doctor was trying to figure out what was 'wrong' with me before getting my pernicious anemia diagnosis, she suspected Porphyria because I get rashes from sunlight and I get quite ill. I wasn't 'in range' to be diagnosed with it, but sunlight definitely makes me ill.

Sometimes I feel like I get a cold burn sensation on one side of my body from too much sunlight, and sometimes my throat will swell in direct sun. I often feel very nauseous after sunlight. My dad is slightly allergic to the sun. I also believe I have vitiligo, but I'm so fair that it hasn't been officially diagnosed yet. I'm sure if I had one of those special lights that dermatologists use to find it, my face would fluoresce like a raccoon mask.