Discussions By Condition: I cannot get a diagnosis.

HELP nausea, bleeding, dark urine AM I GOING TO DIE?

Posted In: I cannot get a diagnosis. 37 Replies
  • Posted By: RachelBullets
  • February 26, 2009
  • 10:15 PM

To start, here's my crazy list of symptoms that make no sense:
-Nausea
-Vomiting/regurgitation
-Headache
-Lightheadedness
-Constipation/more frequently diarrhea
-Menorrhagia
-Pelvic pain
-Back/flank pain
-Abdominal pain
-Nosebleeds
-Occasional chest pain
-Blood pressure abnormalities
-Dark urine
-WBC in urine
-Intermittent jaundice
-Swollen liver
-Increasing fatigue
-Chronic swollen glands




I'm a female about to turn 21 years old, and since the age of 18/19 have been suffering from increasingly severe and worrysome symptoms.

It began with abdominal pain and headaches. I do not have migraines, and it was thought I had cluster headaches, but I do not.

Since then, I have developed chronic nausea, intermittent diarrhea and constipation, and bloody stools. I had always been anemic, and before my bleeding symptoms started, my hemoglobin fell to 9.9. Now, I bleed more often but my hemoglobin has actually climbed to 12.8, even though my hematocrit is still dropping.

The other day, I had a bad scare. I had been having nosebleeds once in a while for 6 months now. But my nose had been bleeding for 4 days, and I felt very dizzy. I went to an urgent care clinic, and my blood pressure was 145/100, no stress prior. Then as it dropped, I got cold sweats and the shakes. Later that night, I vomited suddenly, with no warning, on my boyfriend's porch. 2 days before all this, I noticed my heartbeat was very abnormal for me, but didn't think anything of it.

My doctor suspected Hep because for 6 months, I have had intermittent, increasingly dark urine, ranging from brownish-yellow, to straight-up tea colored, following days that I vomit a lot, and when I saw him, my iver was swollen and I was jaundiced. The darkest my urine was came after very painful swelling in my legs and vomiting bile in th ER. I always have white blood cells in my urine, but no infection.

I have been having problems with hypotension and syncope for a few months now, but have never had high blood pressure until recently.

I'm terrified. What kind of doctor should I look for? Who can help? I can't work because I'm so sick, and have no insurance. I'm afraid I am going to die before someone can help.

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37 Replies:

  • Was there bile in your urine?If so,you definitely have a liver problem,but with the bloody stools you might have ulcerative colitis with associated ascending cholangitis,which would explain the liver trouble.
    richard wayne2b 1232 Replies
    • February 27, 2009
    • 02:13 PM
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  • You need to have clotting tests done,too.
    richard wayne2b 1232 Replies
    • February 27, 2009
    • 02:15 PM
    • 0
    Flag this Response
  • I don't know if there was bile in my urine. One of the dumb nurses dumped my dark urine one day and I couldn't really give anything else for them to look at. The urine problem is intermittent, and I can only make it in to see the doc once every 2-3 months, so its hard for him to catch it when its dark.
    RachelBullets 120 Replies
    • February 27, 2009
    • 04:42 PM
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    Flag this Response
  • Also, I've had a normal colonoscopy, endoscopy, and liver and kidney function tests are normal, as well.
    RachelBullets 120 Replies
    • February 27, 2009
    • 06:33 PM
    • 0
    Flag this Response
  • Kidney Infection!
    Anonymous 42789 Replies Flag this Response
  • I've had several urine cultures done, and all were negative.Negative for hepatitis.Negative ANA and blood culture Made an appointment with a hematologist for a second opinion.
    RachelBullets 120 Replies Flag this Response
  • It doesn't explain everything but the dark urine may suggest Porphyria.
    mkfairchild 1 Replies Flag this Response
  • This is quite a list. Well, there certainly appears to be a liver problem, and a blood problem-- but what caused what? The intermittent jaundice and dark urine is odd-- I'm assuming it is brown rather than red. It could be bilirubinuria or hemoglobinuria. The first is typically a liver problem, and second is typically a hemolytic anemia problem. Did they tell you what was in your urine when it is brown? Have you had tests for LDH and haptoglobin levels, reticulocyte count? You say you LFTs were normal, but if you are jaundice with hepatomegaly, and peeing brown, then they can't be normal. Ever get a bilirubin level (direct and indirect)? You said things got worse after an epiosde of leg swelling. It hurt in your leg? Whole leg or calf only? Have you had clotting times (PT, PPT, bleeding time, INR)? A liver problem can cause poor clotting leading to your epistaxis. Your leg pain, and diarrhea are odd, and with a normal colonscopy could be ischemic problems secondary to a hypercoagulopathy. There are many of those. Clotting could cause the leg pain (DVT), occassional chest pains (small muscular infarcts), diarrhea with blood (Ischemic bowel), and then cause a liver infarct (like Budd Chiari) and then lead to paradoxical coag problems like epistaxis and menorrhagia. Hypercoagulability could be the deal, possibly even rare things like paroxysmal noctural hemoglobinuria (PNH). This is all pretty rare, and if all the Heps have really been ruled out, then maybe it is something to think about. Bottom line-- I would find a gastroenterologist to get this figured out. Best of luck.
    landseer 11 Replies Flag this Response
  • Please again list the medications you are taking. I recall one has jaundice and dark urine as a side effect, but don't remember which one. Please list them again for us and tell us if you have stopped any of your medications. How are your symptoms now?DOM
    acuann 3080 Replies Flag this Response
  • This is quite a list. Well, there certainly appears to be a liver problem, and a blood problem-- but what caused what? The intermittent jaundice and dark urine is odd-- I'm assuming it is brown rather than red. It could be bilirubinuria or hemoglobinuria. The first is typically a liver problem, and second is typically a hemolytic anemia problem. Did they tell you what was in your urine when it is brown? Have you had tests for LDH and haptoglobin levels, reticulocyte count? You say you LFTs were normal, but if you are jaundice with hepatomegaly, and peeing brown, then they can't be normal. Ever get a bilirubin level (direct and indirect)? You said things got worse after an epiosde of leg swelling. It hurt in your leg? Whole leg or calf only? Have you had clotting times (PT, PPT, bleeding time, INR)? A liver problem can cause poor clotting leading to your epistaxis. Your leg pain, and diarrhea are odd, and with a normal colonscopy could be ischemic problems secondary to a hypercoagulopathy. There are many of those. Clotting could cause the leg pain (DVT), occassional chest pains (small muscular infarcts), diarrhea with blood (Ischemic bowel), and then cause a liver infarct (like Budd Chiari) and then lead to paradoxical coag problems like epistaxis and menorrhagia. Hypercoagulability could be the deal, possibly even rare things like paroxysmal noctural hemoglobinuria (PNH). This is all pretty rare, and if all the Heps have really been ruled out, then maybe it is something to think about. Bottom line-- I would find a gastroenterologist to get this figured out. Best of luck. PT - 12.4PTT - 21.6 INR - 1.2I recently had an ANA because my father has RA and a blood culture looking for a cause of endocarditis, because my chest pain is more frequent, I have begun having serious palpitations and shortness of breath. In fact, I went swimming a couple of weeks ago, and I'm a great swimmer. I swam maybe 50 feet before I couldn't breath because I had such severe chest pain, and I almost drowned.The leg swelling I got the morning of the serious vomiting bile in the ER wasn't in my calf at all. It was around my right knee, into my thigh. This was following a night of very light drinking . The day after was when I noticed the dark-brown urine, this was my third time seeing urine that color. When I went to urgent care, however, it was only maybe half as dark. Its always very short-lived, but worries me. I'm not anemic anymore [within a year-long period w/o iron supplements of any kind, my hemoglobin went from 9.9 to 12.8 was what it was last I got it checked, but my RBC count keeps creeping up with my RDW.
    RachelBullets 120 Replies Flag this Response
  • Sweetie, you have one crazy mess of problems. All of the responses so far have been honest and appropriate. What concerns me is this. With that mess of symptoms, why would you inquire in here and not immediately see specialist?I was so sure in the beginning, that you had one type of Hepatitis but you seem to have pooh-poohed that suggestion.I want to ask you a very personal question and I ask w/ absolute respect. Have you ever been known to bring on symptoms by worry? That is not impossible, you know. Your ailments are wide-ranging. They seem to affect so many different organs and internal systems.With the vacillation between constipation and diarrhea, it could indicate IBS. You need to have someone check all of your issues and report to you their findings. You're young and strong. You should be able to reach a conclusion. Have you ever traveled to another country which has problems with water or food?I hope you get to the bottom of it. You are very brave with all of those symptoms. Personally (were it me), I would root for hypochondria!!!Let us know how you fair!!!!Best,
    Anonymous 42789 Replies Flag this Response
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  • Have you had your copper levels checked? I had very similar symptoms and had seen several doctors before getting to the bottom of it. Some of them thought I was imagining all this as well. Hang in there!
    Anonymous 42789 Replies Flag this Response
  • I've never had my copper checked. I've seen two GI doctors, and made an appointment with a hematologist, which went absolutely nowhere because, hurray, I lost my insurance. I come here and do hours of research so I have something to bring my paid-by-the-state-so-I-may-make-a-mistake Primary doc. I'm starting to think the nausea may be neurological since it does not respond to any antiemetic drugs . I've also developed an arrythmia, and that bugs me. When in the ER recently because I was afraid I had a clot in my leg , and my heart rate monitor showed my heart jump from 74 or so bpm to 151 for just a few seconds, and come back down. Its a terribly uncomfprtable feeling. Honestly, while everything worries me of course, my biggest concern are my night sweats and fevers...they're worse than ever. I get a fever of appx. 100 degreesthree times a week, and have night sweats that soak straight through whatever clothes I am wearing AND the blanket..I sweat as much as my boyfriends diabetic great grandmother...I'm 21. I've had a negative TB skin test, which the docs said was the most common cause of chronic night sweats. Its preventing any normal sleep I could possibly get, which maybe thats why I'm SO ***n EXHAUSTED. I've been looking into Autonomic Dysfunction among other things, but I feel just so lost.
    RachelBullets 120 Replies Flag this Response
  • Like I said in my previous post, I would have your copper levels checked. You may have a condition known as Wilson's disease. Take a look at this NIH link: http://digestive.niddk.nih.gov/ddiseases/pubs/wilson/.
    Anonymous 42789 Replies Flag this Response
  • Please again list the medications you are taking. I recall one has jaundice and dark urine as a side effect, but don't remember which one. Please list them again for us and tell us if you have stopped any of your medications. How are your symptoms now?DOM Your meds please..have they changed any scripts lately? DOM
    acuann 3080 Replies Flag this Response
  • All that I take is Celexa and the bcp Nortrel.I do not take the placebo pills of the bcp , in an effort to stop the constant menstruation. Now I'm even bleeding despite skipping placebo pills, and I've already tried other birth control to stop it, but they didn't work, so now I have nothing.My symptoms are horrible still, and the night sweats, joint pain, easy bleeding, fevers and swollen glands are in a constant state of intensifying. The chest pain is still irregular, along with the diarrhea. I've had a blood culture and my white cell count is normal.However, since the resolution of my severe, unexplained, long-lasting anemia , my rbc count has been slightly higg, and my RDW, last it was checked, jumped from 17.4 to 21.6I haven't had the dark brown urine in about 3 months, but I get some yellowing in my eyes every couple of days.I know that liver diseases can cause clotting problems, but if it isn't hepatitis, I don't know what it could be.I know it sounds paranoid, but with so many matching symptoms and a family member who had it at my age, I have always had leukemia in the back of my mind. Can't say that to the doc, though. Then you're nuts.
    RachelBullets 120 Replies Flag this Response
  • Its not impossible, but I'm a math girl.Statistically, that's probably not it. Then again, I think that we've pretty much ruled out anything that is statistically probable. I have an appointment on the 10th, and I'll request both my iron, and copper.
    RachelBullets 120 Replies Flag this Response
  • Its not impossible, but I'm a math girl.Statistically, that's probably not it. Then again, I think that we've pretty much ruled out anything that is statistically probable. I have an appointment on the 10th, and I'll request both my iron, and copper. Add B12 and D to the mix. DOM
    acuann 3080 Replies Flag this Response
  • Nortrel - An increased risk of the following serious adverse reactions has been associated with the use of oral contraceptives.Thrombophlebitis and venous thrombosis with or without embolismArterial thromboembolism, pulmonary embolismMyocardial infarctionCerebral hemorrhageCerebral thrombosis HypertensionGallbladder diseaseHepatic adenomas or benign liver tumorsThe following adverse reactions have been reported in patients receiving oral contraceptives and are believed to be drug-related:NauseaVomitingGastrointestinal symptoms (such as abdominal cramps and bloating)Breakthrough bleedingSpottingChange in menstrual flow AmenorrheaTemporary infertility after discontinuation of treatmentEdemaMelasma which may persistBreast changes: tenderness, enlargement, secretionChange in weight (increase or decrease)Change in cervical erosion and secretionDiminution in lactation when given immediately postpartumCholestatic jaundiceMigraine Rash (allergic)Mental depressionReduced tolerance to carbohydratesVaginal candidiasis Change in corneal curvature (steepening)Intolerance to contact lensesThe following adverse reactions have been reported in users of oral contraceptives and the association has been neither confirmed nor refuted:Pre-menstrual syndrome CataractsChanges in appetite Cystitis-like syndromeHeadacheNervousnessDizzinessHirsutism Loss of scalp hairErythema multiforme Erythema nodosumHemorrhagic eruptionVaginitisPorphyria Impaired renal function Hemolytic uremic syndromeAcneChanges in libido ColitisBudd-Chiari SyndromeI don't know why your doctors haven't looked at this drug causing your jaundice and most of your other symptoms. I think it is a MAJOR factor.DOM
    acuann 3080 Replies Flag this Response
  • I've had both B12 and D checked, they were normal. I also thought it was B12 for some time until that test came back. I asked my gyno about possibly stopping the birth control for those reasons, and she felt my benifits outweighed my risk of anything. It was suggested that my antidepressants were the cause of my night sweats and even though I am not on Celexa anymore, the night sweats are getting worse. The other night, it was every four hours I woke up DRENCHED...unlike any other time before, and they are continuing to get worse. I also have fever spikes up to 100 or 101 and cold sweats during the day, without an infection. The night sweats have now been going on for 6 months.
    RachelBullets 120 Replies Flag this Response
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