Potential Diagnosis? Dr is being vague.
Posted , 2 users are following.
Hello guys,
I went in for a normal checkup and I the doctor found that I had Protein in the urine (Proteinuria). My Blood Pressure is a bit high (140 / 90) and so is my Cholesterol (a bit high). I did a 24 Hour Test (Nephrologist), and an Ultrasound.
My numbers came back, my creatinine (1.27), GFR 72 and the protein in the urine is at 4+ (I think its based on MG). My ultrasound came back with simple cysts on right kidney.
The Nephrologist now wants me to go in for a Biopsy (of the normal kidney) and I am honestly extremely nervous about all this. All my other tests have come back as negative (HIV, etc, etc, etc. My question is, I think the doctor is good and all but he does not explain things to me in great detail which bothers me a bit. He won't even tell me what he thinks it is. I am the type of person who wonders and unfortunately stresses a lot (mainly because I know I have not taken care of myself...). Basically I want your opinion on whether this is the best course of action and whether I have much to be worried about.
I am a 36 / M / 270 LBS / Non White (But not black) american. What do you think it could be? Could it be only due to the hypertension? Do I need to do any other tests?
Thank you all so much, and best of luck with yours.
0 likes, 3 replies
helen54849 stevendoe
Posted
Hi,
It is natural to worry about the unknown we have all been there
So lets look at the facts. You have protien in your urine possibly due to the cyst. You have high blood pressure, this is the first thing you need to tackle and it is easily solved with blood pressure medication a number around 120/70 will help you as kidneys do not like high blood pressure they will only get worse. If you are a bit overweight start doing a bit of exercise, if your diet is poor improve it, avoid salt, low salt and ibuprofen kidneys hate all these things. Don't stop eating things you like unless you are told to do so eat everything you like just in small amounts.
Your GFR is not too bad anything over 60 is considered normal but it is not accurate that is why neph's will go off creatinine levels, unfortunatley your creatinine is recorded differently that in the uk so I don't know if yours is ok or not.
I would have the biopsy on your good kidney as this will let you know if there is anything else going on and give you some piece of mind whatever the outcome.
I have had 3 biopsy's two on my own kidneys and one on my transplanted one (mine own were the best). In the UK you go i n as a day case you have local anesthetis so you are awake and it just feels like someone poking about it doesn't hurt. You then have to lie flat for at least 4 hours to decrese the risk of a kidney bleed and then you go home and you have to take it easy for a day or so after. Your biopsy should give answers.
We cant give diagnosis as we are not doctors but to summerise you need to get your blood pressure under control, sort your lifestyle out if need be and have your biopsy. Those are the first steps and that is all you need to concentrate on at the moment, this should help with your anxiety just take baby steps and take each day at a time. Finally don't worry about something you have no control over you will drive yourself barmy. Good luck and keep us posted.
stevendoe helen54849
Posted
Hi Helen,
Thank you for the quick reply. It is in my nature to stress unfortunately. I barely slept and researched all night. Currently, my creatinine is ok in us standards.
I am on fenofibrate of 145mg 1 dose/daily for cholesterol, and 50mg of losartan 1 dose/daily for high bp (they started me at 25mg it did nothing).
I have cut out all animal protein from my diet immediately, even before then, I would only eat meat and chicken a few times a week only. I have to lose weight for sure.
I have a biopsy scheduled next week, so fingers crossed, I know it will be a couple weeks from now to know anything. I was able to speak to another doctor, that took the time out of his non-work day to take my call for free (super kind of him and I will be switching to him). He answered alot of my questions. They both said fsgs was at the top of their list of diagnosis, but biopsy has to confirm diagnosis. And I know it can be alot worse things, but that scares me. I just want to know what I have can be limited in progression. I know it isn't lupus or anything viral, they have tested for those.
So the top things it can be are:
fsgs
iga nephropathy
Other immuno ones
low on the scale but due to obesity & high bp
I guess I just want to know if it is fsgs, can i stop it from getting worse? When you read online, its like doomsday and scary.
I hope you are doing well, seems like you have been through your fair share.
helen54849 stevendoe
Posted
Hi,
Its no problem I know how scary it is, I have Alports which is genetic (even though no one else in my family has it, but is complex and can skip generations) if you have chronic kidney disease which all of the things you have listed are the chances are it will progress but lets wait until you have a concrete diagnosis. Also don't believe everything you read online, sometimes it is useful and sometimes it does more harm than good. Sometimes two or more different types of BP meds are required at once to bring the BP down, I used to be on 2 and they helped. My GFR was stable from when I was 13 and only went down hill when I was 37 (two children later, you wont have this issue lol) I was predicted to be on dialysis in 18 months and I lasted 7 months so they cannot predict how quickly these things will progress if at all. I know people who stay at stage 3 (you are no where near this) and never progress. Even though I knew all my life that I would be on dialysis at some point when the time came it still scared me to death I gace my head a wobble and had a word with myself (if my kids would of seen me scared they would of been scared so poker face all day long but this helped) my point is, is its ok to be scared and its ok to worry you are no less of a person for doing either. You can slow the process by getting your bp in check, if you exercise you will also find this helps your BP, when I was on dialysis I did metafit (high intensity training) 3 times a week most of the time I didn't want to as I worked full time and I do all of the admin, quotes, advertising etc for our business but doing it made me feel better. You need to experiment a bit find something you enjoy. In doing this you will help your BP, your weight and your kidney function. I cant promise you it wont drop no one can but you can certainly help. Please give me an update after your biopsy you will be fine.