Discussions By Condition: I cannot get a diagnosis.

dry eyes and tiredness - long medical history

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Listening
  • February 4, 2008
  • 10:47 PM

Helllo

Since my fourth year I am familiair with a kidney disease, MPGF, most likely type I. Used a lot of medications those days, most important one being prednison. Since I was 8 I've also developed nephrotic syndrome. After this I was tapered off of the prednison. At 18 the kidney disease flare up. Prednison was prescribed again. It went somewhat better, and after about 6 months the prednison was tapered again. I think I remember I felt better (less tired) on the prednison and I didn't like being taken off.

From the age of 18 I've used an ACE inhibitor and a duiretic (lasix and after that chloortalidon).

Around my 18th I was diagnosed with dry eyes. This really took a while because at first my doc thought I was sleeping with my eyes open. Shirmer test is around 0 to 1, so pretty low. Have tried lots of stuff to get more comfy eyes - only works to a certain extend though and I really hate the symptoms the dryness gives - light sensitive, pain. The tiredness was never addressed - one kidney doc sayed my kidney function is too good to give real tiredness, although another said that every patient experiences different symptoms - which would explain about any symptom I could ever get I guess so I am not all that convinced to be honest.

In spite of all the predictions my kidneys are still quite stable with a funtion of about 50%. Proteinloss is in the area of 4 / 6 grams a day, with ACE inhibitor it decreases somewhat to the range of 1,5 - 3,5 grams a day.

I've been feeling 'sick' a long time I think. At 18 dry eyes was diagnozed. Also since at least my 18th birthday I've had tiredness. 2 types to be precise; in the morning most of the time I wake up feeling worse and more tired than when I went to sleep. I feel a bit better when the day goes by mostly. Sometimes I feel so tired I really don't enjoy anything and feel just plain sick. I do have periods with 'good' days; less tired and less eyediscomfort. Haven't got a clue how to influence those days, although sleeping seems to help with both the symptoms most of the time. After sleeping 3 days 12 hours a day I felt a lot better last time I was in the situation I as able to do that :p

At my 25th my doc concluded my hemoglobin and hematocrit were both to high. He suspected leukemia I think to remember. I've had a painfull hipbiopt which didn't say anything much. It didn't seem to be a blooddisorder. My hemoglobin and hematocrit has been in the high order of normal ever since (hemoglobin at it's highest 12.9). At the moment it falls in normal range (10.x), although with my kidney probs normal the hb would be to low - if anything about normal. Also my albumin has been to high different times in the passed, although at those times I wasn't dried out according to my doc. He didn't think it was anything special - although again it was remarkable because most nephrotic syndrome patients has to low albumin.

I've been looking for answers for years now and still haven't found any. I would settle for a solution though :D but that seems far away also.
Have tried many things to temper the dryness of the eyes. Autologus drops works best, although still some days are just horible, especially in the morning. The tiredness gets in the way with to much also.

A lot of things were looked at - with no resulting diagnosis besides dry eyes. Here a list of some of the results of (blood)tests etc:
- blood tests for autoimmune diseases. Everything seems to be in normal ranges. this was also tested when the kidney disease was very active (when I was 4) and several times after that. Tested 1 year ago and also no thing popped up.
- lip biopsy to check for sjogrens. negative.
- blood test vitamin a - about 1.5 of the normal upper limit (dunno how - I don't use any vitamin pills but according to the doc it is nothing to worry about)
- TSH was tested several times. Tried to get a trial with thyroid replacing hormone since in nephrotic syndrome you lose thyroid hormone also and there are cases on pubmed which indicate it might help. My tsh was (8.7, 5.5, 3.5), each test about a year from the other. Didn't get the trial because all were near or in normal range. T4 and T3 were also in normal range.
- some female hormone was 1.5 times normal for a man (would have to look up the one). testosterone etc were quite normal, although free testosterone was near the lower normalborder.

I hope the story is somewhat readable. I saw this site and wanted to try it. Please help :cool:

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11 Replies:

  • What does MPGF stand for? What's the name of your kidney disease?Sorry you are having all these troubling problems and fatigue on top of it all.
    Anonymous 42789 Replies
    • February 5, 2008
    • 08:12 AM
    • 0
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  • how does your body react to things such as exercise? Do you get any bad after effects from it?
    taniaaust1 2267 Replies
    • February 5, 2008
    • 10:00 AM
    • 0
    Flag this Response
  • http://www.sjogrens.org/images/BEA_008.jpgSjogren's?Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. Sjögren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans. Nine out of ten patients are women. The average age of onset is late 40s although Sjögren's occurs in all age groups in both women and men.About 50% of the time Sjögren's syndrome occurs alone, and 50% of the time it occurs in the presence of another connective tissue disease. The four most common diagnoses that co-exist with Sjögren's syndrome are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis. Sometimes researchers refer to the first type as "Primary Sjögren's" and the second as "Secondary Sjögren's." All instances of Sjögren's syndrome are systemic, affecting the entire body.The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life.
    rad-skw 1605 Replies
    • February 5, 2008
    • 00:22 PM
    • 0
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  • What does MPGF stand for? What's the name of your kidney disease?Sorry you are having all these troubling problems and fatigue on top of it all.Hello EllenThanks for your concern :)I am sorry gave the wrong abbreviation. It's http://en.wikipedia.org/wiki/Membranous_glomerulonephritis. This was diagnozed after a biopty of the kidney. It was thought to be secondary, caused by reflux I think. There were no autoimmune indicators in the blood.Greetings
    Listening 4 Replies
    • February 5, 2008
    • 05:24 PM
    • 0
    Flag this Response
  • how does your body react to things such as exercise? Do you get any bad after effects from it?Exercise feels fine at the moment itself. Next day the tiredness seems to be worse though.:(
    Listening 4 Replies
    • February 5, 2008
    • 05:26 PM
    • 0
    Flag this Response
  • http://www.sjogrens.org/images/BEA_008.jpgSjogren's?Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. Sjögren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans. Nine out of ten patients are women. The average age of onset is late 40s although Sjögren's occurs in all age groups in both women and men.About 50% of the time Sjögren's syndrome occurs alone, and 50% of the time it occurs in the presence of another connective tissue disease. The four most common diagnoses that co-exist with Sjögren's syndrome are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis. Sometimes researchers refer to the first type as "Primary Sjögren's" and the second as "Secondary Sjögren's." All instances of Sjögren's syndrome are systemic, affecting the entire body.The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life.HiThanks for posting :) I've had the bloodwork for sjogren (all clear negatives) and also the lipbiopty which was also a clear negative. I have to say I was kinda disappointed it seemed a sensible cause.
    Listening 4 Replies
    • February 5, 2008
    • 05:28 PM
    • 0
    Flag this Response
  • Hmmm...I did a search for both of the following:membranous glomerulonephritis and erythocytosisand thenmembranous glomerulonephritis and dry eyes. They did not come back with anything useful. The latter one showed one article where a patient had dry eyes and kidney disease, but he had way more abnormalities than you and the elevated hemoglobin and hematocrit (erythrocytosis) were not listed, so I do not think this would apply to you.Is it possible to go to a new doctor, who might have some fresh ideas? Maybe a major academic center with doctors who might be able to pick up rare syndromes?I am so sorry you are tired all the time and have the dry eyes on top of your kidney disease.I hope you can get the help you need (and answers) soon.Best Wishes.
    Anonymous 42789 Replies
    • February 6, 2008
    • 05:16 AM
    • 0
    Flag this Response
  • Hmmm...I did a search for both of the following:membranous glomerulonephritis and erythocytosisand thenmembranous glomerulonephritis and dry eyes. They did not come back with anything useful. The latter one showed one article where a patient had dry eyes and kidney disease, but he had way more abnormalities than you and the elevated hemoglobin and hematocrit (erythrocytosis) were not listed, so I do not think this would apply to you.Is it possible to go to a new doctor, who might have some fresh ideas? Maybe a major academic center with doctors who might be able to pick up rare syndromes?I am so sorry you are tired all the time and have the dry eyes on top of your kidney disease.I hope you can get the help you need (and answers) soon.Best Wishes.HiThanks for your response:)Been there done that.... This is kinda last resort. Other option I am still thinking about is finding a doc who wants to try thyroid hormone supplements, but I am not sure if it's a realistic option.
    Listening 4 Replies
    • February 6, 2008
    • 07:20 PM
    • 0
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  • Did you get tested for the genetic disease Hemochromatosis? That could be the root of all your problems since it causes elevated iron which then causes all the other problems you talk about.
    Anonymous 42789 Replies Flag this Response
  • HellloSince my fourth year I am familiair with a kidney disease, MPGF, most likely type I. Used a lot of medications those days, most important one being prednison. Since I was 8 I've also developed nephrotic syndrome. After this I was tapered off of the prednison. At 18 the kidney disease flare up. Prednison was prescribed again. It went somewhat better, and after about 6 months the prednison was tapered again. I think I remember I felt better (less tired) on the prednison and I didn't like being taken off.From the age of 18 I've used an ACE inhibitor and a duiretic (lasix and after that chloortalidon).Around my 18th I was diagnosed with dry eyes. This really took a while because at first my doc thought I was sleeping with my eyes open. Shirmer test is around 0 to 1, so pretty low. Have tried lots of stuff to get more comfy eyes - only works to a certain extend though and I really hate the symptoms the dryness gives - light sensitive, pain. The tiredness was never addressed - one kidney doc sayed my kidney function is too good to give real tiredness, although another said that every patient experiences different symptoms - which would explain about any symptom I could ever get I guess so I am not all that convinced to be honest.In spite of all the predictions my kidneys are still quite stable with a funtion of about 50%. Proteinloss is in the area of 4 / 6 grams a day, with ACE inhibitor it decreases somewhat to the range of 1,5 - 3,5 grams a day.I've been feeling 'sick' a long time I think. At 18 dry eyes was diagnozed. Also since at least my 18th birthday I've had tiredness. 2 types to be precise; in the morning most of the time I wake up feeling worse and more tired than when I went to sleep. I feel a bit better when the day goes by mostly. Sometimes I feel so tired I really don't enjoy anything and feel just plain sick. I do have periods with 'good' days; less tired and less eyediscomfort. Haven't got a clue how to influence those days, although sleeping seems to help with both the symptoms most of the time. After sleeping 3 days 12 hours a day I felt a lot better last time I was in the situation I as able to do that :pAt my 25th my doc concluded my hemoglobin and hematocrit were both to high. He suspected leukemia I think to remember. I've had a painfull hipbiopt which didn't say anything much. It didn't seem to be a blooddisorder. My hemoglobin and hematocrit has been in the high order of normal ever since (hemoglobin at it's highest 12.9). At the moment it falls in normal range (10.x), although with my kidney probs normal the hb would be to low - if anything about normal. Also my albumin has been to high different times in the passed, although at those times I wasn't dried out according to my doc. He didn't think it was anything special - although again it was remarkable because most nephrotic syndrome patients has to low albumin.I've been looking for answers for years now and still haven't found any. I would settle for a solution though :D but that seems far away also.Have tried many things to temper the dryness of the eyes. Autologus drops works best, although still some days are just horible, especially in the morning. The tiredness gets in the way with to much also.A lot of things were looked at - with no resulting diagnosis besides dry eyes. Here a list of some of the results of (blood)tests etc:- blood tests for autoimmune diseases. Everything seems to be in normal ranges. this was also tested when the kidney disease was very active (when I was 4) and several times after that. Tested 1 year ago and also no thing popped up.- lip biopsy to check for sjogrens. negative.- blood test vitamin a - about 1.5 of the normal upper limit (dunno how - I don't use any vitamin pills but according to the doc it is nothing to worry about)- TSH was tested several times. Tried to get a trial with thyroid replacing hormone since in nephrotic syndrome you lose thyroid hormone also and there are cases on pubmed which indicate it might help. My tsh was (8.7, 5.5, 3.5), each test about a year from the other. Didn't get the trial because all were near or in normal range. T4 and T3 were also in normal range.- some female hormone was 1.5 times normal for a man (would have to look up the one). testosterone etc were quite normal, although free testosterone was near the lower normalborder.I hope the story is somewhat readable. I saw this site and wanted to try it. Please help :cool:Sounds like you could have candida or leaky gut syndrome which can cause dry eyes. I use Dr. Biamonte he has worked wonders--you should try him. My dry eyes after a year are almost all cured.
    Anonymous 42789 Replies
    • September 28, 2009
    • 06:09 PM
    • 0
    Flag this Response
  • Have you considered that the dry eyes and sensitivity to light could be sideeffects from the medications you're taking?Both Lasix and chloortalidone have photosensitivity listed as possible sideeffects and tiredness and dry eyes have also been reported.http://www.rxlist.com/lasix-drug.htmhttp://www.drugs.com/sfx/atenolol-and-chlorthalidone-side-effects.htmlYou mentioned these symptoms started at 18,around the same time you stated taking those medications.Have you have a 24 hour provoked urine test to check for mercury?There have been reports of people with mercury poisoning having membranous glomerulonephritis.Also penicillamine, trimethadione, skin-lightening creams and gold.Have you been treated with any of those as a small child or used skin lightening creams for a long period of time or pearl powder from Asia?It wouldn't hurt to get a blood test done for mercury but this usually only shows acute poisoning and a provoked urine test is usually needed to check for chronic toxicity.This is usually done with a chelating agent,DMSA is preferred i think.Due to your illness it would be sensible to discuss this with your primary health practitioner to make sure that doing this test wouldn't have any harmful effects.If you choose to get it done it would be a good idea to get all the heavy metals tested at the same time for convenience sake so you don't have to do it again.Have you been checked for non-Hodgkin's lymphoma?Are you a male or a female?Regarding the high albumin etc.It could have some significance.Medicine doesn't know everything at this time,new discoveries are being made everyday.Perhaps it could also be due to the medication/s you are takingDid doctor do tests for HBsAg, HBeAg and hepatitis B virus DNA?Strep?What are your cholesterol levels like?Do you have any breathing difficulties?Maybe you could try fish oil for the dryness.Theres been some reports that thats been succesful with eye dryness.http://www.nlm.nih.gov/medlineplus/ency/article/000503.htmhttp://www.nephrologynow.com/publications/treatment-of-idiopathic-membranous-nephropathy-with-the-herb-astragalus-membranaceu
    Anonymous 42789 Replies
    • September 29, 2009
    • 06:57 AM
    • 0
    Flag this Response
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