Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Blue ring in commode--tryptophan/kynurenine issue??

Discussion in 'General ME/CFS Discussion' started by sue1234, Jan 7, 2018.

  1. sue1234

    sue1234

    Messages:
    21
    Likes:
    11
    Hi, I haven't posted much, because I didn't really think I had ME. That is, until I looked at a list of diagnostic criteria for ME by the International (can't remember the full name). I had pretty much everything on the list. I started 11 years ago suddenly with POTS, which pretty much left me housebound. I have declined over the years to where I pretty much sit on the couch all day. I've been to many doctors, but nothing prescribed has helped.

    Now on to my title for the post. About 25 years ago, I began noticing a faint blue ring in the commode in our master bedroom. We didn't use any blue colored cleaners, so I wasn't sure what it was, but was not concerned. Fast forward about 10 or more years, and I switched using bathrooms. I then used the "girls" bathroom with my daughters, and the "guys" used the master. Well, a blue ring began showing up in the new bathroom. I decided it had to be because of me, because I have a habit of using the bathroom in the middle of the night and not flushing because I don't want to make noise. So, it sits for many hours. I was still mostly not understanding it and not concerned. Fastforward to about 5 years ago, and I used the 3rd bathroom in our house right before we left on an overnight doctor's trip. I forgot to flush, and when we came home, it had a blue ring. I then made an appt. with a geneticist, because all I could find online was two possible causes and both genetic. The doctor was awful...he asked when did my last child leave the house(implying psychological issues). I asked if he could please just run basic tests on tryptophan. He agreed. I had blood and spot urine done. When the tests came back, it listed all the amino acids EXCEPT tryptophan!! How does that happen??? I tried to message and call, and they kind of blew me off, so I still don't know anything. And I just let it go.

    Sorry this is so long! Fastforward to two years ago. I had a hip replacement. It required me to use a bedside commode at night, as it was too far to walk safely at night with my POTS. Well, lo and behold, the paper in the commode with NO extra water like a toilet would have turned blue by next midday. It was finally proof that I, me, was putting something out in my urine that when exposed to air long enough, caused a blue film on the urine and paper. I took my pictures to a urologist and he literally blew me off. He was in the room for maybe 4 minutes and that was it.

    So, I am here reading about all of the posts of kynurenine and indoleamines, and I'm thinking, I thought I read those things a few years ago when researching about blue urine? So, now I'm wondering if this is a sign for me for ME, somehow that I have not a genetic issue with tryptophan, but whatever causes the tryptophan issue with ME. Any insight please? I NEED to figure this out.
     
  2. Moof

    Moof

    Messages:
    17
    Likes:
    23
    You don't have porphyria, do you? Apart from obvious things like medications and food dyes, it's the only thing I've heard of that can leave blue urine stains.
     
  3. sue1234

    sue1234

    Messages:
    21
    Likes:
    11
    About 10 years ago my new endocrinologist ran a panel for Porphyria and it was negative. After that I had also emailed a Porphyria expert and he said by what tests I described, he didn't think I had it. I had also put my urine out in the sun for the day and it didn't turn tea-colored or purple.
     
    Moof likes this.
  4. Runner5

    Runner5 Senior Member

    Messages:
    113
    Likes:
    176
    PNW
    Every been bit on the neck by someone sketchy in the dead of night? -- totally joking ;-P

    I have issues with Tryptophan but my kidneys output so much urine it's always like water and they have trouble even testing it for anything. (I have trouble with all amino acids honestly, I have to supplement them wholesale to feel the least bit normal but I take 300 - 700mg of L-Tryptophan before bed every night.) What I eat and the amino acids I take have a huge impact on how I feel, but I have never connected the dots, it doesn't add up. All I can figure is there is something yet to be discovered that will make it all make sense. (I believe my kidney issues are unconnected to the ME and a result of a short stint on Lithium).

    Are you on any funky meds that might be turning your urine colors? Do you take any supplements that are dark green like chlorophyll, spirulina, etc? Maybe even something black (because black dye often uses blue as a base). I work with dyes and it keeps making me think of Indigo, which starts out dark green...but yeah that's a random straw.

    Very interesting.
     
  5. sue1234

    sue1234

    Messages:
    21
    Likes:
    11
    I drink a lot, so I put out a bunch of urine that is almost clear. I don't seem to hold onto anything I drink.

    All I take for daily meds is a thyroid pill. Occasionally I'll take a blood pressure pill. I occasionally also take vitamin D, but it makes me feel bad so I quit. Most supplements make me feel bad, so I generally don't take any.

    Yea, I know there is a test for indicanuria, so testing for indicans which are blue. I haven't had that test specifically, as I think it is more alternative medicine.
     
    Runner5 likes this.
  6. Runner5

    Runner5 Senior Member

    Messages:
    113
    Likes:
    176
    PNW
    You mentioned your Tryptophan issue was genetic -- that is interesting can you go into that a little more?

    Because in my family I think the amino acid issue is also genetic. My family is from the Southern US and I think the gene defect with the amino acids also causes Type II diabetes or at least on the surface there seems to be a correlation.

    I think most doctors are programmed to blow people off and not take them seriously. It mentally really hurt me for years until I marathon watched the program, "Monsters Inside Me" -- it's a creepy cooky medical show about parasites but what was just amazing were people going into the doctor getting blown off as 'not sick' told to go home or discharged from the hospital while still very ill but because they didn't find anything on the tests they just said - leave -and they'll have illnesses like Malaria, Leprosy, brain infections, RABIES, and the like and I am always thinking -- HOW DO YOU MISS MALARIA??? Gees did they get a medical degree at the Dollar Tree? I mean leprosy should be obvious right?

    That all is to say I think after watching that I felt like I had received significantly better medical treatment and appreciated (some) of the doctors I've had a little more.
     
  7. sue1234

    sue1234

    Messages:
    21
    Likes:
    11
    I don't have a genetic issue(that I know of!) related to tryptophan. I do have a genetic bone disease called Multiple Epiphyseal Dysplasia, but it hasn't messed with my life too much in almost 60 years! When I went to the geneticist the first time, it was based on reading that two genetic diseases can cause blue urine, but this didn't start until I was in my 30s, so I think it is environmental or virus, etc. The one genetic disease I concentrated on was called Blue Diaper Syndrome, as the urine that sits in a diaper exposed to air leaves a blue color. Obviously it begins as an infant showing signs and symptoms. It is because of the way the body doesn't handle tryptophan correctly. It also has something to do with calcium, vitamin D, and amino acid handling. I don't pretend to understand it exactly, just the basics. That's why I figured the doctor could at least check my tryptophan levels and go from there. And, then he didn't check them.

    Crazy how they missed some things that are not very rare on that show!
     
    Runner5 likes this.
  8. sue1234

    sue1234

    Messages:
    21
    Likes:
    11
    I wrote this because I had read many posts discussing the kynurenine pathway and tryptophan that I thought were interesting and possibly relevant. I'm hoping those brilliant minds that actually understand the chemistry of it can throw out some ideas for possible testing or what I should be asking a doctor for. As you have read, I haven't had much luck in finding a doctor that will address it, so what kind of doctor might investigate this?
     

See more popular forum discussions.

Share This Page