With no diagnosis, I wanted to prove to Dr. Premier - and to myself because at this point I'm discouraged, depressed, and starting to think I might be making all this up - so I did another Sunlight Urine Test. This time, I left the urine out in the sun for 48 hours and documented with photos every couple of hours. At the time, I didn't realize what a drastic change it was, but looking at the step by step photos, I'm now taking back my moments when I second guessed myself. I do have Porphyria, and here is my proof.
Unfortunately, photos don't get an official diagnosis. I did bring these to Dr. Premier and once again made him answer what else in medical history could make this happen to a person's urine. And again his only answer was porphyria. I feel like he wants to give me a diagnosis...he's not one of the mean doctors and I truly feel like he's on my side. However, his hands are tied in a way, because the medical community needs documented proof. The geneticist in Rochester, MN (who has been consulting Dr. Premier for a few months now on my case) says that I must have elevated porphyrin levels of 10 times or greater in order to receive any diagnosis... and without that I cannot receive treatments because they are too dangerous. Typical treatments include a 10% glucose infusion via IV and/or heme infusion. I thought that glucose could be administered without a diagnosis, but with strong suspicion, but Dr. Premier looked into it and explained that the infusion is not the typical glucose IV that any patient would receive in the ER... in fact, it can be quite risky to a healthy person.
The only thing I can do is wait for an attack and perform another 24 hour urine... and pray that I'm sick enough (so ridiculous) to get the official diagnosis. After all, between attacks my levels are 6 times higher than normal... so hopefully I can reach that magic number - 10.
It's great to know that I'm not the only one "detail oriented" enough to keep photos of her sun exposed urine and show it to her physician, friends and family because it changed colors like it's supposed to. I'm cheering for your "10" girl! :)
ReplyDeleteim doing that now, lol. it's ridiculous rules for diagnostic purposes now days. i feel they sometimes harm patients more than help them.
DeleteIt sucks that this is such a pain in the ass disease to diagnose. Im in the present moment waiting for my results to come back- got half of it back- im "borderline" with my RBC porphyns- everything points to Porphyria- no other medical problem that I have found matches what I describe and nothing is genetic (I recently found out that my mum gets the same pain and she then told me that all the women in my family have it on her side too!)...
ReplyDeleteIts unfortunate that I too am waiting for "another attack" so that I can get good enough results for them to make a difinitive answer- Im 6 months since I first got this pain and my family has had generations of this pain with no luck- I've been called crazy as well- "psychosomatic" they said- I had to see a psych- who CLEARED me of course- but being a nurse it was humiliating!! I contacted the porphyria foundation in Australia and the lady said that she has heared numerous stories similar to ours- she said it should be a diagnostic factor- as many people with porphyria have first been called crazy.
Hope they diagnose it and you get to "10"... theres a porphyria FB group i just found before your page- looks like a good support group, take care!
Just reading your blog. I'm 25 and have been very ill for the last 2.5 years. Tried the sunlight urine test as I have suspected porphyria for some time. It changed over 48 hours from nearly clear yellow to a dark yellow-almost brown- I'm wondering how dramatic the change has to be and whether normal urine will change colour if subjected to sunlight. I wasn't mid attack when I took the sample so that's why it started normal colour.
ReplyDeleteAlso my urine does this to I have insomnia bone pain and muscle pain liver desease and no thyroid and low testosterone been batle with constant chest infections and diaria acne and so on, I'm not sensitiv to light and had a dream that I proferia dasteria wat ever that is have not found it
ReplyDeleteyou probably have AIP. did you ever receive answers?
DeleteAlso my urine does this to I have insomnia bone pain and muscle pain liver desease and no thyroid and low testosterone been batle with constant chest infections and diaria acne and so on, I'm not sensitiv to light and had a dream that I proferia dasteria wat ever that is have not found it
ReplyDeleteJan - I just had to write and tell you how much I love your blog. I don't know if you are still checking it as the last post was ages ago, but it is so comforting reading about your experiences which are so much like my own.
ReplyDeleteI laughed when I read your descriptions of your doctors, particularly Dr Flippant. I laughed so hard I nearly wet myself - an impressive feat with urinary retention!! I have a gastroenterologist just like him - let's call him Professor Lofty. On my first appointment he asked me if I was a "good girl", gave me a diagnosis of "perfectionist", and referred me to his practice psychiatrist. My second visit, shortly after my Google epiphany, went something like this:
Me: So I'm starting to wonder if I might have porphyria-
Prof. Lofty: It's not porphyria.
Me: Um... So I'm starting to wonder if I have porphyria because my urine turns dark purple after a few hours in the sunshine, and that's the only thing I can find to explain it.
Prof. Lofty: Oh. Well whatever it is, it's not porphyria.
Me: Do you know of any other reason why my pee changes colour in the sun?
Prof. Lofty: You've probably been eating too many greens. (Is this man even a doctor?)
Me: I'm hoping to get tested for it nonetheless.
Prof. Lofty: Well your GP can waste his time chasing that up, but I won't support it. Let's move on.
Yeah. He's a joy. One would think that he and Dr Flippant may even be the same person, but I am in Australia so this is unlikely. It just goes to show that the medical fraternity is the same wherever you are.
You HAVE to start asking them if they will put it in writing! I asked one of my doctors for a test. She said no. I then said, "okay, I'm putting it in writing right now that I'm requesting this test and I want it added to my record. I'm also going to fax a copy to you. ". Funny how their tune changes
ReplyDeleteHello, I'm unsure if you were ever diagnosed with Porphyria but there is one other disease that can cause darkening of the urine. It has to do with the inability to break down l-tyrosine.It is called Alkaptonuria Ii think.
ReplyDeleteMy urine is turning quite dark in the Sun more now to the brown side, I tested one urine for a quick check trick on Alkaptonuria with a few drops added of bleach which can check within about 2 to 3 days it was Negative...I am thus far Negative on stoolfecal test for CP & VP Coproporphyria & Variegate I still have the other ones to do now & want to get Genetics panel done at Invitae in San Francisco for $325.00 it takes about 14 to 21 days for results...What a horrible illness, I suspect I have AIP but possible I have one of the Sun types in Cutaneous...I changed all my lights at home away from UV Lighting & still need to do the windows & avoid the Sun. I wonder now does computers or Phone devices have UV Lights I am always using the computer on the lowest lighting now...Hugs best wishes to all of you here & thanks for this info blog x x
ReplyDeleteI am also Negative in urine I bought the protein color stick for Proteinuria so ruled this out entirely
ReplyDeletePorphyrins found in urine are also a biomarker for chemical and/or heavy metal toxicity. https://clinicalgate.com/urinary-porphyrins-for-the-detection-of-heavy-metal-and-toxic-chemical-exposure/
ReplyDelete