There is a lot of confusion, even in the medical community regarding the color of urine produced by people with porphyria.  It is generally known that the name porphyria refers to purple urine; but, it is a misnomer, as far as I can tell.

It is my understanding that the highest incidence of purple urine is with those unfortunate sufferers of the cutaneous types of porphyria.

I have one of the acute porphyrias (or Variegate, which has a little of both acute and cutaneous) and have had many severe attacks; only a few times has my urine been other than a shade of yellow.  The worst time it was purple (according to my wife…I don’t remember it); and, during a couple very bad attacks it was a shade of orange.

I’ve tried the trick of putting a container of my urine in the sun; but, it has never turned colors, even when I am having an attack.

However, when I am feeling porphyric, it is pretty common for my urine to be darker than normal. The goal is to drink enough water to keep it clear, with very little color.

One other note, on urine, is that a 24 hour sample of urine can be tested to determine if someone has porphyria.  However, it is not unusual for this test to yield a false negative.  In my case, the 24 hour urine sample proved that I have porphyria.  The hematologist that ordered the test told me that it was the first time that he has seen porphyria determined this way…and, I wasn’t even having an attack or feeling porphyric.

38 Responses to Urine

  1. R. Houlihan says:

    When ever I have an Attack, and they are usuually triggered by a Phlebotomy, Infection ,stress or drugs I can put my urine clear yellow in the sun and 1 hr later it is a dark redish brown and the problems really start. I have VP and Hemochromatosis my attacks mimic a Heart attack shortness of breath and I can’t even lift my feet to walk if I get the IV Hematin at the begining of the attack, it really does help reduce the time and the severity of the attack. I have found that a Hospital is the most dangerous place for me to be, because Hemochrmatosis if not treated can kill you, were as Porphyria they can kill you while trying to treat you.

    • Greg says:

      Wow, you have it bad. I am terribly sorry to hear that. Have they ever given you IV glucose? I’ve never had IV Hematin; I’m afraid to go down that path. As far as the sunlight test on urine is concerned, I still wonder if it primarily works for those with cutaneous types of porphyria. You stated that you VP; correct me if I am wrong, but, I believe that is both cutaneous and acute. I have AIP and I have only had colored urine during one very major attack. I have been hospitalized several times for AIP, with no coloration of my urine.

  2. Ashley says:

    My husband was just diagnosed with AIP and we are currently in the hospital for the 3rd time and they just figured it out. Can you tell me what you do specifically to overcome an attack quickly and what you do to prevent attacks? His urine has been reddish ever since I married him. I always thought he just didn’t drink enough water but it was SEVERELY tea colored once we set it in the sun. I am just looking for answers and commonality with someone.

    • Greg says:

      This is what has worked for me to combat an attack –
      * Donnatal for pain. Adding ibuprofen helps. If real bad, then Percocept. If that doesn’t work, I call my hematologist for an office visit & morphine.
      * Lot’s of glucose for an attack. I liberally use the glucose as a preventative, too. You can get glucose tablets at a drug store or the pharmacy section of grocery stores and Target or Walmart. I find it handy to carry around small tubes of 10; but, I refill them from bottles of 50 that I get from Target (cheapest I’ve found). You can order powdered glucose off of Amazon; there are a lot of choices from very expensive to relatively inexpensive. I get it in 5lb bags from Strange Brew – yes it is used for brewing beer!
      * Magnesium – I mix magnesium citrate (Calm) and magnesium sulfate (epsom salts) together because I don’t like the taste of either of them, alone; but, taken together, the taste is not bad. Either one by itself will do the trick, though. Magnesium is a muscle relaxer & it eases the colon spasms.
      * Drink plenty of water.
      * Minimize fructose intake.
      * Get up and move around. Exercise when possible.

      Once the attack is over, you can concentrate on prevention.

      • Verity Burke says:

        Sulfate is a nono

        • Verity Burke says:

          I put a question ? I have problems with morphine and dilaudid State increase my pain when when I go to the hospital if there’s only a few other people I’ve heard that have the same as you it’s not everyone I guess I’m just Stranger Than strange but good information thank you

  3. Jenn says:

    I have been readiung ur blog, I love the info you are putting up about Porphyria.
    I can relate with you because I have Hereditary CoPorphyria, It sucks having
    this form because it is a little bit of all of the Porphyria’s put into one..
    I have to take two different types of high doses of Morphine everyday. I take the immediate release as well as the continous release. I have been living with knowing what is my problem since I was 19 yrs old. I am now 42.
    I have been doing the Heme for years now, my Doctor suggested this way after we found that the glucose Iv therapy was not really helping any.
    We came up with a form of treatment for myself that involoves 2 to 3 days of 12 hour iv glucose bags then usually a 3 day treatment of Heme. The glucose helps to lessen the side affects of the Heme infusion.
    I am currently starting a page myself on what it is like for me to live with Hereditary CoPorphyria. I will talk about everything from medical insurance problems, what it was like for me trying to find a doctor who took me serious and not some kind of drugey. What it has been like for my family to live with me. And the count less of surgeries I have been forced to endure because of this illness and the medical professionals not knowing what there doing.. But I guess the whole reason why I am writing you this is to simply say Thank You!! maybe one day soon you will pop over and check out my site.. Have a great day from one Porphyria sufferer to another.. 🙂

    • Greg says:

      Please do send me the link to your blog & I will include it in the links on my blog. I do hope that the information here has been of some help. And, I am truly sorry to hear about your problems; I couldn’t even imagine coporphyria…I do love the sun.

  4. Karen says:

    Hi. My daughters (23 & 24 yrs old) each began having symptoms during their senior year in high school. Mine started several years before theirs. We don’t have health insurance and have not gotten a diagnosis. At my repeated request, one doctor tested my oldest daughter for AIP, but there were several problems with the way it was done and I don’t trust the negative results. We have symptoms that are all over the place—neurological, psychological, autoimmune, rheumatological, etc., and we’ve been shuffled from one specialist to another with no diagnosis. I can’t seem to get a straight answer when I ask doctors a particular question, so I’m giving your forum a try: Do porphyria sufferers typically have ongoing symptoms OTHER THAN abdominal pain when NOT having attacks of abdominal pain? Any one of us might go a year and a half with no abdominal pain or seizures, but there are some things (like severe joint pain) that either come and go unrelated to abdominal attacks or stay 24/7/365. I have a “standing” 24-hr urine test to be done when I’m having an attack, but I haven’t had an attack OF ABDOMINAL PAIN in almost a year. I do, however, have other symptoms that never seem to go away completely, like memory problems and bone pain that feels like my body is eating itself from the inside out. BTW, my symptoms began with a 4-year period in which I could feel no pain as such. (I felt it as an itch.) Does any of this sound familiar?

    • Greg says:

      I honestly don’t know about porphyria attacks with no abdominal pain. But, I guess it could happen. I frequently feel “off” with no pain; but, I would imagine if the porphyria symptoms were enough to be problematic, I would feel pain. My 24 hour urine test proved positive, even though I was not having an attack. Even though the test was a couple years ago, I never asked for a printout of the test until recently. It turns out that two porphyrin levels were past the acceptable level; and a third was right at the limit. And, I was not having an attack.

      I’ve read that a lot of people will put a container of urine in the sun, as a test for porphyria; if it turns purple or brown, it is an indication of porphyria. However, I’ve tried it and it didn’t work.

      The only thing that a doctor can do to help with porphyria is painkillers and hematin. Personally, I consider hematin a last resort. I have porphyria and the only thing the doctor does is prescribe pain killers and keep an eye on my blood tests (which are always a mess). When I don’t have my painkillers with me, I use benadryl; it is over the counter & works.

      With all that said, there are other complicated illnesses out there that are real hard to diagnose. Considering that you don’t have abdominal pain, you may want to consider other illnesses.

    • Michael says:

      Sounds like lupus, to start with ask your doctor for an Ana blood test, if it comes back positive, then your doctors will know you have anti-bodies in your blood. 97% of people with lupus will get a positive Ana blood test. But sometimes having a positive Ana blood test doesn’t mean you have lupus but can be a start to show that something is not right to your doctor. Lupus is very hard to get diagnosed because bloods always change, and you have to see your doctor at the right time when you are in pain not when your pain has disappeared otherwise it will not show up in the blood tests.

  5. Fleur says:

    I don’t know if my symptoms are porphyria, but they do seem to respond to magnesium. I have had the same symptoms intermittently all my life. It started eighteen months after my first period, I got agonising stomach pains that would last all night, and intense itching all over, with nothing to see, it felt as though my nerves were jumping, with and electricity sort of sensation, especially in the soles of my feet. Recently I got the lot together, stomach pains that woke me up in the night, itching skin, feeling as though I am trembling, and unable to relax or sleep, psychologically a mess, nausea and constipation, as though my digestive system isn’t moving or is moving in reverse, and being sick if I try to eat anything, and a sudden onset episode of very fast heartbeats. Triggers for attacks seem to be hormonal, stress, cigarettes (which I gave up years ago), various antidepressants and sleeping tablets. I am not sure what form of magnesium works best, if half a teaspoonful of Epsom salts (Magnesium sulphate) dissolved in water is enough, and whether Magnesium citrate works better, and if vitamin B6 helps it work better. But my experience is that Magnesium is good for a bad stomach, fast heartbeats, constipation, and even the itching skin.

    I might add, when I get bad attacks of these symptoms, my urine is reddish brown the next morning. I have noticed this for years, and just thought my body was getting rid of the toxins that were making me ill.

    Has anyone else here experienced the itching skin?

    • Paul says:

      Fleur, You really need to seek medical help with all those symptoms. Sounds like porphyria to me. Please be aware that many Doctors are ignorant of the disease so look for a specialist in this area.
      I have not been diagnosed but am seeking diagnosis myself. My urine has been dark for years when having an attack & I have recently had my sigmoid colon removed after gall bladder was removed 3 years ago.

  6. Curious says:

    I’m really sorry to hear about everyone’s symptoms.

    I read a case study about AIP and am wondering if it may explain my illness. In the past 5 years I have had two one-month periods of psychiatric symptoms (delusions, etc.) that have not appeared again, with normal functioning in between and since. Tests for other metabolic diseases such as Wilson’s disease were negative. Physicians believe my symptoms are/were due to medical causes but no illness has been diagnosed.

    My abdominal pain is mainly treated by IV morphine in the hospital. CT/ultrasound/endoscopy performed numerous times over the years were negative, requiring hospital treatment when it does occur periodically.

    I’m not a “cyberchobdriac” type but was thinking it might be worthwhile to be tested. Thoughts?

  7. Karin Metcalf says:

    My brother is suffering from very similar things…his urine does turn purple too…his drs. Say chrones but he doesn’t get better…he is hospitalized frequently and can not work..any advise would be appreciated.

    • Greg says:

      That is really a tough one, Karin. I feel real bad for your brother; he is blessed to have you looking out for him, though.

      I don’t know anything about Crohn’s disease, nor if anything else causes urine to turn purple. I do know that folks consider that coloration of urine to be an absolute indication of porphyria…and, it might. And, I don’t know if it is possible for someone to have both Crohn’s & porphyria. My initial reaction to your question was based entirely on my distrust of the medical community in these regards. They are great if you have the flu or there is a bone sticking out of your leg, though. I guess the question should really be…can he behave as if he has porphyria (following a porphyria safe diet) and not make Crohn’s worse (if he does, in fact have Crohn’s).
      *** Have you compared how a porphyria safe diet interacts with the needs of Crohn’s patients?

      Have you tried seeing a hematologist? After all porphyria is a blood disease. Please remember that this viewpoint is a result of my history with doctors; every one I saw screwed me up, until I went to a hematologist who had me tested for porphyria. Thank God that the test results were positive for more than one porphyrin (one would have been enough).

  8. Ashlee says:

    When you have an attack do you know whether your CK levels are raised?

    • Greg says:

      Hi Ashlee,

      I had to look up CK, to see what it meant. I haven’t had any muscle problems, other than the smooth muscle spasms, during attacks. I did go back and look through several of the many blood tests that I’ve had & found no mention of CK or creatine kinase. So, I would have to say that I have not had any tests for it. Actually, since I have tested positive for porphyria, I have not had a blood test during an attack. All of the times that I was tested, during attacks, was in the dark ages, when the doctors were fumbling around taking all the wrong tests.

      That said, the hematologist that I see, looks at a long list of specific blood details; but, none of them are CK.

      Have you had your CK levels tested during attacks?

  9. Crystal says:

    How long does it take for the 24 hr test results to come back? Mine were sent to the lab in Texas over two weeks ago. The wait has been agonizing. We suspect HC because my pain is more in my back and legs than my abdomen.

    • Greg says:

      I really can’t remember how long it took. It seems to me that they would want to test it quickly, while it is still fresh.

  10. Judy Stone says:

    I was diagnosed at age 19 although my symptoms started at age 12 resulting in a exploratory surgery. My attack at 19 involved severe cramping in my stomach, vomiting, and my urine was red like hawian fruit punch. When my oldest son was 12 he had similar symptoms and they did an apendodectomy on him. His appendix was inflamed, but the doctor didn’t think enough for the pain he was in. Because of my history the doctor tested him for porphyria and he was diagnosed with it. Now I am 54 and for about 6 years my new doctors are questioning my diagnoses. All their tests now come back
    negative. My worst attack in 2010 caused my breathing to shut down. I was in a medically induced comma on life support and feeding tube for 21 days in ICU. My urine was dark red, but the urine test came back negative, but they took the sample from my catheter which means it was exposed to light and was not kept on ice. Since then my GI doctor said I have ten tests that all came back negative and he claims I do not have porphyria. I feel like I do have it and I wonder if it is possible the tests were negative for being done incorrectly or done after the crisis was over.

    • Greg says:

      Hi Judy,

      I am sorry to hear about your troubles. False negatives are not uncommon. And, I’ve found that doctors don’t like porphyria; think about it – it is very hard to manage, there are no expensive drugs to prescribe, and no surgeries will help. When it all boils down, it is up to you to figure out what is causing your attacks; even if a doctor really wants to help, he has limited time & knowledge…and, he has to worry about lawyers & government regulations. I’ve seen & heard about more difficulty getting diagnosis and the level of porphyrins needed for a diagnosis has been increased.

      Bottom line is that a food / drug / activity log is critical. For instance, sometimes when I walk into a hardware or garden store, I will feel porphyric or my sinuses will cloud up…I don’t have to know whether it is solvents or pollen, I just remove my self from the area. When I go into the city, I have health problems; there is no doubt in my mind that it is from pollution.

      I truly hope that you find a way to manage your and your son’s situations.


  11. Bloodstone says:

    I am in Australia and am having a difficult time with Doctors. I have been told many times that I could not possibly be experiencing these symptoms. I have finally found one who believes me and he suggests that it might be Porphyria. So I go to do the blood test and the pathology just takes a urine sample right there. No hiding the urine from light, no 24 hour collection, no information at all. Then of course test comes back negative. Doctor asks did you do sample over 24 hours? Of course not. Knew nothing of how testing is performed. Then test also has note on bottom saying reviews of how test is performed will be changing. How useless are these facilities. QML is useless.. Who does this testing properly? Your life in their hand and they don’t even know what they are doing. Had so many missmanaged episodes with doctors and hospitals that I stopped going and have had 20 plus years of extreem abdominal pain, chest pain, breathing difficulties, and more, feels like I’m gonna have a heart attack on the toilet most times when I have an attack it is so severe. I cant go anywhere, even to the hardware. The toxins and people smoking cause attacks and it begins right there in the store. I have no life, no job, no friends, no family, lost my kids cause I was too sick even to take them to school. Everytime the light hit it feels like a toxic injection into the veins that travels around my whole body and I can barely move even to make it to the toilet. I often have to use a wheel chair. Only known about this possible diagnosis for 2 months and have just refused to go into the light for the last 4 weeks. I have improved so much hat i can walk properly and the abdominal pain and tacacardia have almost ceased. No help just avoiding the triggers. Ofcouse this means it is harder to get a diagnosis. have been scared to eat for so long cause I thought it was the food. I can finally eat and sleep a bit and am loosing weight steadily. Not ever had heme or IV glucose or pain treatment. Just a constant life of pain and people telling me how horrible I am because I can’t deal with people or stress or anything and they think there is no reason for my behaviour as that is all this is and it is my choice to be like this. No understanding ever from anyone till a possible diagnosis of porphyria was suggested. Still no physical help to deal with this. Just go home. Maybe test will show positive one day. Then will they do something?

    • Greg says:

      Hi “Bloodstone”,

      I am truly saddened to hear about your suffering. Porphyria is a very challenging and difficult to diagnose illness. Doctors & researchers tend to focus their time and energy on illnesses that are more wide-spread and on those illnesses that are easier to manage. And, to a great extent the “cures” developed are those that will make money for the drug companies.

      One of the huge problems with porphyria is that there are no drugs or surgeries that will cure it. Yes, there is IV heme; but, that comes with great risk of infection and vein collapse. I avoid heme like the plague because I tend to fight infections constantly.

      I think the best benefits to having a positive diagnosis is that doctors will tend to be more willing to exercise more care when prescribing medications (in my case, pain killers and antibiotics). I am terrified of all medications.

      Please be careful of falling into the trap of considering that a positive diagnosis will answer all your problems; I have seen that thought process go badly for family members. Though (at least in America) it is only legal for doctors and pharmaceutical companies to “cure” or “heal”, it is really up to the individual to ownership and fight it. There are some doctors who truly care; but, in the end, you only see them for a few minutes a year, if you are lucky. On the other hand, you deal with your illness 24 hours a day and 7 days a week…it is all you.

      I will suggest something that even healthy people should do….keep a log. What food are you eating (details including spices), what are you drinking (getting enough water?), how are you feeling, where are you, what activities. See if you can find a correlation between what you are eating/doing and your health.

      For instance, I have found that if I eat cucumbers I will have a porphyria attack & need glucose and pain killers. Just that simple. The complication comes from things that aren’t absolute triggers, but, that are irritants. There are probably foods that I avoid that are not a problem; but, I agree with the adage “better safe than sorry”.

      I don’t have as much issue with light as you do; but, if I do get a sun burn, I will be sick for weeks. So, I try to stay in the shade and wear a hat when I am outdoors. Hardware stores are a challenge; sometimes I have no problems…sometimes, there are solvents in the air that cause an attack.

      I pray that you find a way to manage this.


  12. Amy says:

    I am currently feeling a mild attack. No one can diagnose me with it, yet my mother and daughter have been diagnosed. Type is AIP. So today I noticed pinkish urine in the potty. I figured well, let’s see how bad this one will be. I put my clear yellow (with a tinge of pink) in the sun about 5 pm. In less than two hours it turned like a beautiful dark wine. My trigger? I twisted my back yesterday. I’ve even had it turn almost black, like Dr. Pepper with red food coloring.

  13. Cynthia says:

    I have porphyria and was diagnosed over 1 1/2. I have had treatments for my porphyria I was diagnosed with PCT. I have read this blog but none of you ever say that you stay out of the sun. Why is that?

    • Greg says:

      PCT falls into the cutaneous category. If you get too much sun, you’ll blister…and, there are lots of complications to that. Be careful. I’ve talked with someone who had PCT; he said that his doctor would frequently perform phlebotomies. Are you doing that?

  14. Mae says:

    Living with PCT here. It is a surprisingly depressing condition to have sometimes. Luckily I have aligned myself with lots of night owls. I don’t really know what I would do without my friends.
    Having porphyria is annoying in a way because it is so often ignored by the medical community. Doctors don’t usually have to know about them because they’re rare and have little treatment. In my case, I was lucky that the first time I showed symptoms I was in San Diego, California where there are more resources than my hometown. They knew what they were seeing when I came to the emergency room with blisters all over my skin.
    I always thought AIP was scarier than what I deal with. I still wear a medalert bracelet, but it always seemed scary that AIP can just randomly attack. I can have “dormancy” periods, but I don’t trust them. I guess we all have to be constantly vigilant.
    I like that you put information out there that no one puts up. 🙂

  15. Becki says:

    I have a cousin who has AIP. She and I both believe our grandmother had it, but that it went undiagnosed. One of HER children likely had it and went undiagnosed as well. I have been having a multitude of health issues for years now, that no doctor has been able to find a cause for. Very high blood pressure that is resistant to medications. Or, a medication will work for a time (a couple weeks to a couple years) without incident, then just stops working. Horrible side effects from nearly all of them. Gut issues, liver pain, neuropathic pain, headaches, hypothyroidism, and the list goes on and on.

    I have SO many symptoms of Porphyria, (especially the chemically induced kind it seems), but have always rested in the knowledge that I DON’T have it, and didn’t need to be tested for it, because my urine has never been any color but clear yellow. I tried several times to find information on urine color, to see if it HAD to be purple/red/brown for a porph diagnosis, but was never able to find anything much on it, and what I did find, led me to believe it had to be off color. So few Doctors seem to know much about it, and my faith in Doctors in general is so bad after years of their drugs making me worse, I didn’t want to open that can of worms.

    I ran across your blog this morning after yet another conversation with my cousin and another nudge from her in the direction of Porphyria testing. I guess a person CAN have this without having changes in urine color. I’ll be contacting my primary and getting the ball rolling on testing.

    Thank you SO much for this blog, and for posting about your urine. So many are afraid to talk about these things!

    • Greg says:

      I am sorry to hear about your suffering, Becki.

      Doctors don’t know much about porphyria and don’t have the time or inclination to research it. Even when they do know a little about it, they can’t be much help. Each person reacts so differently, that it is really up to the individual to identify triggers and irritants. Then there are the doctors that can’t be bothered…there are no expensive drugs or surgeries.

      Try keeping a food log. An activity log can help, too. Solvents and aromas can be triggers. I would not be surprised if electromagnetic fields can be a problem.

      Of course, pray.

    • Fleur says:

      I’ve read that urine is initially yellow but when you leave out in the sun for a day or two becomes pinkish.

  16. Jaclyn says:

    I’ve had unexplained abdominal pain since June 2016. All my lab work and scans have been normal. I was in so much pain last night that I searched the internet one more time for any answers. I happened upon an article talking about porphyria, first time I ever heard about it. I’ve spent all day today reading about it and am convinced I need to be tested. Since it’s the weekend and I couldn’t get a script for the urine test, I left some urine in a throw away specimen in the sun and am waiting to see if it changes color. While I wait to have an actual urine test and see a specialist, I read there are foods that people with porphyria should stay away from, but every site I visited has different (and conflicting) information from the other. Does anyone have any info about foods to stay away from if you have porphyria? I’ve also tried upping my carb intake while waiting to see a specialist.

    • Greg says:

      I am sorry to hear about your suffering, Jaclyn.

      Everyone one reacts differently to porphyria (that statement probably holds true to just about any ailment). The only way to identify food triggers is to keep and analyze a food log. Keep in mind that some foods are absolute triggers and others are just irritants. Build up enough irritants and it causes a trigger.

      Also, materials that you come in contact with can trigger problems. Especially problematic are solvents and cleaners. We cannot use dryer sheets in my house. Finding laundry and dish detergents is time consuming.

  17. Worried says:

    Thank you so much for posting about this. I’ve had on off attacks of abdominal pain, full body pain, exhaustion, vomiting, nausea, confusion, headaches, and occasionally trouble breathing for 6 or 7 years now and the doctors have been at a complete loss. I’ve been bounced around from specialist to specialist and had to deal with so many doctors treating me like a liar (as if i want to spend my time in hospitals unable to work or go to college). It got to the point where I was too traumatized to go to the doctor so I gave up for a while. But recently it has gotten really bad. I’ve had at least 5 or 6 of these attacks this year alone and now they just seem to be chaining into each other. We still don’t have any answers but I’m seeing a hematologist next week and hoping they might be able to figure this out. My grandfather, aunt, and sister all have the same symptoms to varying degrees and none of us have yet to be diagnosed. The only stuff that has ever presented in my tests have been increased liver enzymes and recently we found that my gallbladder is barely functioning at normal. My mom recently suggested looking into porphyria and after talking with my aunt as well it feels like our symptoms fit. I’ve tried placing my urine in the sunlight but nothing has changed yet though whenever I have an attack my urine is usually yellow rather than its usual clear until i start drinking a ton of water again. I’m just worried cause whatever is wrong is getting worse. I really hope this new doctor can figure this out. Any advice for seeing the hematologist? I just want to make sure they run the tests right so that if it is porphyria then we can catch it.

    • Greg says:

      I am really sorry to hear about your suffering. Please forgive me for my slow response…it has been fairly tough lately. So, all my energy has been put toward maintaining my job and family responsibilities.

      Be careful with doctors. They have been steeped in pharmacology and surgery; and, they have to focus on things that the majority of people deal with. Porphyria is fairly rare. Also, they have been trained to be confident and they cannot admit that they do not know (kind of like engineers). Another problem is that the official stance is that it is not porphyria unless the porphyrins are 3 TIMES the upper limit of what is acceptable; that is ridiculous.

      Are you keeping a food and activity log? Identifying the triggers and irritants is crucial. Also, I’ve found that it helps me to chew glucose tablets or mix glucose powder in water. But, you have to be careful; it might harm people with diabetes or other issues…I really don’t know.

      Hot tubs / saunas help me…sweating is good. Exercise is important…though it is hard to do some times.


  18. Anne Akers says:

    Hi everyone, I pray your day is a good one. I am feeling I may also have porphria as my Dr suggested a 3 day urine test in the sun. To my surprise it went from a light yellow to a dark brownish color with a slight port tinge.
    I have been unwell on and off for years and was diagnosed with fibromyalgia. This may be true but I have lots of tummy pain and sun and heat sensitivity.
    Reading through all of your posts confirms in my mind that porphria is active right now.
    I go to Dr today with said urine so it will be interesting where this journey to diagnosis takes me.
    I have had a fever for days with no obvious infection so I am concerned she will send me to hospital.
    I was in for 5 days last week for stomach inflammation which settled after IV fast for 3 days.
    So here I go lovely people.
    Thank you Greg for this blog, it has clarified many questions.
    Kind regards

  19. Shannon Olmos says:

    Hello everyone, I believe my 16 yr old daughter may have AIP. It started more than 2 yrs ago with chronic stomach issues, went to many gastroenterologists but they couldn’t find anything, so diagnosed her with FRAPs which is frequent reoccurring abdominal pain. But in last 6 months, she has had breathing problems, muscle pain and weakness in her extremities, back and abdomen. Along with headaches. Just last week her speech was slurred and she was in a very confused state for minutes at a time. I took her to ER because I thought she was having a seizure. But all they did was refer her to a neurologist for an EEG…so my question would be how do I get her Dr to test for this? Or is there somewhere I could find a specialist that treats porphyria, I legitimately can’t seem to find a specialist in my area. Thank you, hugs from Oregon. Xoxo

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