Discussions By Condition: I cannot get a diagnosis.

Hematuria and Fatigue

Posted In: I cannot get a diagnosis. 25 Replies
  • Posted By: Hypersomniac
  • January 17, 2009
  • 08:42 PM

I am a 54 yr. old female who has been diagnosed with "chronic microscopic hematuria" for the past 25+ years. I have had full workups, including invasive and non-invasive tests, by urologists without any cause or diagnosis being discovered. I've also suffered from debilitating fatigue and "brainfog" plus abnormal ANA blood test results for almost as long, with diagnoses including fibromyalgia and ACTS (Atypical Connective Tissue Disease Syndrome). I've taken thyroid replacement meds since age 21 for Hashimoto's Thyroiditis.

In addition to the fatigue, I experience mild flu-like symptoms much of the time, and now my urine is appearing orange. I am unable to connect this change to any of the easily observed causes such as medications, foods, etc., and am reluctant to have yet more testing done since testing has never revealed a true diagnosis in the first place.

Help?!

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25 Replies:

  • There is a vastly underdiagnosed condition called nut-cracker syndrome. It is when the left renal vein is compressed between aorta and the superior mesenteric artery and for each heart beat is “cracked” as a nut in a nut-cracker. With time the vein can react to this compression by producing a sort of scar tissue which leaves even less room for the blood to pass. The symptoms are sometimes left flank pain; sometimes there is blood in the urine, sometimes only little which requires a blood test. Since left ovarian vein drains in left renal vein, it can also give pelvic symptoms such as pelvic pain, pelvic venous congestion or pelvic varicose veins. Venography (phlebography) is a way to diagnose it (but it requires a radiologist familiar with this condition), ultrasound is less suitable. It is not easy to treat. So far the severe cases have demanded venous surgery, but now the first cases have been treated with stent placement. Sometimes this condition can improve by itself, if collateral veins form around the compression site. Could this be a part of your problem? Good luck!
    Felsen 510 Replies
    • January 17, 2009
    • 10:37 PM
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  • Dear Felson, Thank you so much for your very comprehensive and appropriate response to my query. You are definitely on-track, as I was (mis)diagnosed as having renal artery stenosis a year ago, after an IVP test. I scheduled surgery to have a stent put in, and once I was under and they took a look, they discovered it was not the case. I guess that rules out the possibility of "nut-cracker" syndrome? I must tell you too that the orange urine I produced last night and this morning (a total of 3 times) has disappeared, so that may have been a fluke of sorts. However, the underlying mystery remains: microscopic hematuria, fatigue, hypersomnia, chronic skin problems and blood pressure issues. Are these related? I wonder...? I would love to continue communicating with you...again, many thanks!
    Hypersomniac 12 Replies
    • January 17, 2009
    • 10:48 PM
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  • Please, read my post again. The nut-cracker’s syndrome means that the left renal vein is compressed and not the renal artery. That is the common mistake that can be made, to examine the artery, while the problem is in the vein. I also think that hematuri even in mild form can cause tiredness. So these symptoms can be linked. Do you ever have other symptoms like the ones I’ve mentioned above? Are you in Europe?
    Felsen 510 Replies
    • January 17, 2009
    • 11:02 PM
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  • I live in the southwestern U.S., but have been all over the world, including several weeks in Europe. Why do you ask? As for the other symptoms, I can't really say I have left flank pain, and any pelvic pain I've experienced is on the right side (feels like broken glass lodged there). In my youth (20's) I was extremely prone to UTI's and treated with sulfa drugs (which I've since developed an allergic reaction to). I wouldn't be surprised if there's a ton of scar tissue as a result. Tiredness is an understatement. My fatigue and brainfog are difficult to function with and affect my work and personal life. Again, many, many thanks for your time and interest. I appreciate your words...
    Hypersomniac 12 Replies
    • January 17, 2009
    • 11:34 PM
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  • I am asking where you live in order to recommend you a doctor near you, who is familiar with this condition. Unfortunately not many doctors are (I am speaking from my own experience). The best doctors are unfortunately in Europe – I am thinking of doctors who have published scientific papers on this topic. (The very best one in my opinion is in Belgium). I have made some research on Medline and there is loads of new research linking nutcracker syndrome and fatigue. As I see it you are a typical Nutcracker patient. I also see that more and more patients are being stented. As for your other symptoms, I can not explain your skin problems, but I am not a doctor. Maybe skin problems can be linked with poor function of the kidney? I find that rather unlikely since your right kidney should be OK. I am not sure what atypical connective tissue syndrome is, but any kind of connective tissue disorder can result in a weaker vein walls thus making you even more prone to the damage from the nut-cracker syndrome. Do you have any hypermobility in your joints? Any varicose veins in your legs? Both are signs of connective tissue disorder. Ok, so here’s a list of doctors who are in US and have published papers on Nutcracker Syndrome (unfortunately not very close to you): Chi YW, Ehrensing C Department of Cardiology, Ochsner Heart and Vascular Institute, Ochsner Clinic Foundation, New Orleans, LA, USA. ychi@ochsner.org Krishnan SG, Pritsiolas J, Susin M, Linden E, Beil-Levi E, Gitman M, Mossey R, Bhaskaran M. Division of Kidney Diseases/Hypertension, North Shore University Hospital, 100 Community Drive, Great Neck, NY 11021, USA. Gorospe EC, Aigbe MO. The Children's Nephrology Clinic, Las Vegas, NV, USA. GorospeE@unlv.nevada.edu Rudloff U, Holmes RJ, Prem JT, Faust GR, Moldwin R, Siegel D. Department of Surgery, Division of Vascular Surgery, Long Island Jewish Medical Center, Long Island Campus for the Albert Einstein College of Medicine, New Hyde Park, New York, USA. udo_rudloff@hotmail.com
    Felsen 510 Replies
    • January 18, 2009
    • 01:33 AM
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  • The post was too long... Scultetus AH, Villavicencio JL, Gillespie DL. Department of Surgery, Uniformed Services University of the Health Sciences, Bethesda, MD 20814-4799, USA. Barsoum MK, Shepherd RF, Welch TJ. Division of Cardiovascular Diseases, Section of Vascular Diseases, Mayo Clinic College of Medicine, Rochester, MN 55905, USA. barsoum.michel@mayo.edu I am glad that I am able to help. Please let me know if you have other questions. :)
    Felsen 510 Replies
    • January 18, 2009
    • 01:34 AM
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  • Once again, many thanks to you. I guessed you live somewhere in Europe, but unfortunately cannot see your profile, since I am a "junior member" here. I am from the east coast (Philadelphia) and get back east once in a while, but lived in San Diego, CA for many years, and would be closer to doctors on the west coast (Los Angeles, for example). However, I didn't see any from that part of the US in your list, unfortunately. I will certainly look into this mysterious Nutcracker Syndrome. Do you have this ailment as well? How did you find out about it? I am glad you responded to my query. You may not be a doctor, but you are articulate, kind and well-versed in medical issues. ;)
    Hypersomniac 12 Replies
    • January 18, 2009
    • 03:04 AM
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  • Hello again, I am not sure my last response was posted? I live closer to the west coast than the east (though I'm from the east originally). I lived in southern California for many years, and would love to find a doctor there (San Diego or Los Angeles). I assume you are in Europe, but cannot read your profile, as I am a "junior member". :rolleyes: I will look into this mysterious Nutcracker syndrome. You may not be a doctor, but you are certainly articulate, kind and well-versed in medical issues. Do you have this disorder yourself? How did you learn about it? Again, many thanks to you...
    Hypersomniac 12 Replies
    • January 18, 2009
    • 03:11 AM
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  • Of course all your symptoms are related.You are an ''autoimmune minefield.'' The microscopic hematuria is the least of your problems.How strongly + is your ANA(the titer)?I'm sorry you have so much wrong with you,but your fatigue is to be expected.
    richard wayne2b 1232 Replies
    • January 18, 2009
    • 02:47 PM
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  • All of these syptoms are commonly cause by autoimmunity to mercury from dental fillings or nickel (dental materials, processed food, etc.),etc. There are blood tests for autoimmunity, and most who determine their cause and reduce it significantly improve www.melisa.org and www.flcv.com/hgrecovp.html, etc. Does the patient have several mercury amalgam fillings, or nickel dental crowns? Try to determine the cause of the immune reactivity, such as by blood immune reactivity test www.melisa.org If mercury is a likely factor based on existance of several amalgam fillings, see www.flcv.com/indexa.html
    berniew1 37 Replies
    • January 18, 2009
    • 02:59 PM
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  • Thank you for all the kind and helpful responses. My ANA titer has been as high as 620:1 and 320:1 (usually) at best. I have very few fillings of any sort in my teeth, and have been tested for trace metals such as copper, with negative findings. There is, however, one fact I did not relay in previous posts: I had silicone breast implants (to correct an anomoly as a result of scoliosis) in the early 1970's, which were found to be severely ruptured nearly 30 years later (a long story, I'm afraid; I will spare the reader) and removed. There is so much controversy about this that I hesitate to even suggest a relationship (ecen to doctors), though in my heart, I can attest to the fact that not one symptom appeared until after I had the implants. I believe the silicone will migrate throughout my body forever, and don't believe there is anything I can do about it. I have done much research, but still no definitive answers...alas... Thank you again to those whom have taken an interest and contributed their thoughts. I hope to continue learning here...
    Hypersomniac 12 Replies
    • January 18, 2009
    • 06:16 PM
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  • I just wanted to say good luck with everything and please let us know how it goes :)
    Felsen 510 Replies
    • January 18, 2009
    • 07:06 PM
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  • Thank you so very much for the caring support. I had all but given up until I found this site. It helps to know there are others with struggles that care. I will continue to seek answers -- hopefully before the fatigue wins out and I can no longer function at all... I will keep you posted...:)
    Hypersomniac 12 Replies
    • January 18, 2009
    • 07:38 PM
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  • Hypersomniac, as others have replied you seem to have other problems as well. But I have noticed that the toughest cases for the doctors to crack are the ones where the patients happen to have more than one condition, which makes the whole picture confusing. And you might be one of those patients. I also want to explain that when they examined your renal artery, they made access into your arterial system through the thigh (or the inguinal area) and they could only visualize your arteries, so the possible pathology of the renal vein went undetected. To detect this one must enter the venous system and that’s a different examination. Yes, I am in Europe and I do have nutcracker as well. It took 12 years for me to get the diagnosis and it would make me happy if I can make somebody’s time to diagnosis shorter. But I see that you have beaten me in this area, since you have had the symptoms for 25 years. That must be considered a record. I made the diagnosis myself, I learned everything about the condition and most of all learned the appearance of the nutcracker on phlebography pictures. And eventually my suspicion was confirmed by a skilful vascular surgeon in Belgium, dr Olivier d’Archambeau. He is one of those doctors interested in the nutcracker syndrome and has published papers on this topic. I see on PubMed that stenting is becoming more common and seems successful. Earlier they only dared stenting bigger veins like the iliac veins but I see that they are now getting bolder. If you want, fell free to drop me a line at felsen56@hotmail.com :)
    Felsen 510 Replies
    • January 19, 2009
    • 00:42 AM
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  • Hey Hypersomniac,I was reading over your symptoms and was wondering have you ever had a lyme disease test? or spoken to a doctor about it? Obviously your symptoms have existed for quite some time and testing might be difficult. The brain fog, fatigue, high BP, are all symptoms I am currently facing and have had two different positive lyme tests (I believe I was infected in Maine and France). I know this is a long shot but lyme disease, like your situation, can be very complicated and can exist in patients for months, years, and decades without being detected.Good luck!
    haylyme 1 Replies
    • February 15, 2010
    • 08:58 PM
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  • Hello, and thank you for your input. I was tested for Lyme long ago (17 years or so) and it was negative. I didn't know hematuria was a common symptom of that, though I was tested because of the fatigue. I appreciate your suggestion, nonetheless, and am always open to comments and assistance. Kind regards, Hypersomniac Hey Hypersomniac, I was reading over your symptoms and was wondering have you ever had a lyme disease test? or spoken to a doctor about it? Obviously your symptoms have existed for quite some time and testing might be difficult. The brain fog, fatigue, high BP, are all symptoms I am currently facing and have had two different positive lyme tests (I believe I was infected in Maine and France). I know this is a long shot but lyme disease, like your situation, can be very complicated and can exist in patients for months, years, and decades without being detected. Good luck!
    Hypersomniac 12 Replies
    • February 15, 2010
    • 10:17 PM
    • 0
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  • Do you have accompaning heart arrhytmia symptoms? any problems concerning menstruation? and do you also consider yourself as a sensitive person?
    jeejee.ca 7 Replies
    • February 15, 2010
    • 10:56 PM
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  • Do you have accompaning heart arrhytmia symptoms? any problems concerning menstruation? and do you also consider yourself as a sensitive person? Thank you for your post. I do have some palpatations and occasional arhythmia, but nothing extreme. I had a hysterectomy about 8 years ago (in my late 40's) due to fibroids, and had a hystery of excessive bleeding prior to that. I have some hypersensitivies (noise, certain chemicals, light). What are you thinking?Thanks again, :confused: Hypersomniac
    Hypersomniac 12 Replies
    • February 15, 2010
    • 11:21 PM
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  • Thank you for your post. I do have some palpatations and occasional arhythmia, but nothing extreme. I had a hysterectomy about 8 years ago (in my late 40's) due to fibroids, and had a history of excessive bleeding prior to that. I have some hypersensitivies (noise, certain chemicals, light). What are you thinking? Thanks again, :confused: Hypersomniac
    Hypersomniac 12 Replies
    • February 15, 2010
    • 11:23 PM
    • 0
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  • Thanks for the detailed reply, I may be able to help you. It may sound odd, but in order for me to come to my conclusion I need your date of birth, time of birth, and city and country of birth. and by the way, does your tip of your pinky finger point inwards?
    jeejee.ca 7 Replies
    • February 15, 2010
    • 11:43 PM
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