Story about Porphyria .

Because I'm a Woman...

Dec 27, 2017

By: Dayle


I discovered sensitivity to fluoroquinolones after being incorrectly prescribed Cirpro for a basic UTI in 2014 and felt strange ever since. In 2015, I decided to go on a high protein low carb diet to get healthy. Oct 2016 I was hospitalized for a seizure brought on by severe hyponatremia that nearly resulted in death. Afterwards, I experienced cyclical spells of non-specific abdominal pain, nausea, depression, and fatigue every month along with abnormal liver values for bi-weekly blood tests. I saw a nephrologist who said I was 100% recovered. My PCP assured me I was fine despite the abnormalities and thought that the abdominal pain was tied to PMS despite the fact I told him I'd never experienced anything like this in my life. I was hospitalized again in July 2017 for severe constipation and mild hyponatremia. I had all diagnostics run on my thyroid, liver, CT scan, abdominal x-rays, ultrasounds, colonoscopy, etc. and no sure cause was found. My PCP finally referred me to a GI doc and a hematologist. I researched "blood conditions" myself and found out about porphyria. I asked my GI doc to run specific tests and preliminary tests showed potential. Corroborating with my hematologist, we did several more tests and I now have the diagnosis of an acute porphyria with a prognosis of AIP. Since my suspicions of porphyria, I change my lifestyle. I switched to a high carb diet and swore of alcohol. I still get small attacks right before menses, but I seem to be able to manage my symptoms so long as I make sure to never skip a snack or meal.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


A Porphyria interview

View interview


Porphyria diet

Porphyria diet. Is there a diet which improves the quality of life of ...

Prevalence of Porphyria

What is the prevalence of Porphyria?

Is Porphyria hereditary?

Is Porphyria hereditary?

Porphyria is also known as...

Porphyria synonyms

Porphyria and depression

Porphyria and depression

Couple and Porphyria

Is it easy to find a partner and/or maintain relationship when you hav...

Porphyria symptoms

Which are the symptoms of Porphyria?

What is Porphyria

What is Porphyria