Porphyria?

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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ellenjanemccallum
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Joined: Sun Jan 07, 2018 3:03 am

Porphyria?

Post by ellenjanemccallum »

Hello to all,

I've been here for a while and not shared my story yet but after another failed attempt at keto I am wondering if anyone else has such awful genes :roll:

For the last twenty years I have been working as a naturopathic nutritionist and trained as a Recode practitioner nearly 3 years ago so have worked hard on my own labs. I am 4/4 with lots of hypermobility issues ( my nickname is ragdoll) and very probably latent acute intermittent porphyria.

I have always found fasting a no no (mainly due to pain) , am prone to histaminey issues with no real allergies to speak of save rapeseed oil and have had a history of very severe abdominal pain, sometimes extending all over. Roll forward to my first proper attempt at going keto and a bit of a shock when passing some very purple urine and a nastier than usual bout of pain. Maybe coincidentally, my thyroid went under at the same time and has never recovered. My GP at the time said maybe it is porphria and lo and behold I have plenty of the genetic mutations associated with it and talking to an older Aunt who is a nurse practitioner she thinks it is in the family but undiagnosed. At the time I was living in a very damp part of the world, we had some water influx in the house and I had hoped that the 'porphyria' could have been triggered by mould. I had high levels of mycotoxins on testing at the time.

All resolved with repairs to the house and got even better when I moved to warmer climate so I decided to give keto another go - pain, massive histamine levels and the purple pee - all resolved with carbohydrates back in my diet.

My conclusion for now is that the carbs have to stay but would love to know if anyone else has experience of this and strategies they are exploring.

My Hb1ac is high side of OK, insulin very good, cholesterol high by conventional thinking (I think it is fine), Thyroid still low with low levels of thyroid antibodies, ferritin very low but blood iron good and everything else I have tested is fine. I do use bio-identical HRT which I get no side effects from although am considering halving it and seeing if with that I can tolerate a lower carb diet. Currently to keep pain (which is my initial warning sign) at bay I need to eat around 70% of my diet as carbs - they are good ones but still carbs! :lol:
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