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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