Newly diagnosed with stage 3 kidney disease
Posted , 30 users are following.
As from the title I am recently diagnosed with stage 3 kidney disease, my gfr is 56. I have been feeling off colour for a few years now with symptoms getting worse. I have weight loss, swollen ankles, shortness of breath, extreme fatigue, a need to pee all through the night, difficulty sleeping, Itchy skin, muscle cramps, headaches very clammy skin and night sweats, pain in right side front & back, potassium high. I have a problem with iron defiency and vit d defiency & my bp is very high at the moment. My gfr went down by 6 in one year don't know much about the years before. I suppose what I want to find out is how should my gp be helping me at this stage with all of the above. Has anyone out there maybe been in my position, or is in the same position that could help me.
I was diagnosed with fibromyalgia in 2002 but have always thought that the diagnosis didn't quite fit.
0 likes, 71 replies
richard87134 Willowby
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Hi, i am stage 3 GFR 58. Symptoms flank pain, headache, chronic fatigue, continuously needing to urinate during the night but nothing there. I've felt poorly for close to two years now. From what i can gather there is no treatment from a Nephrologist until the GFR drops to the 30 range or below, i was diagnosed with IGA Nephropathy two years ago and is just a monitoring stage unfortunately, obviously treating high BP and/or anaemia and heart disease along the way. You're not alone, god bless.
Willowby richard87134
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mikeaust Willowby
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Willowby mikeaust
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Hi.The first symptoms I noticed were extreme fatigue & a pain in my right side.
Billysmum Willowby
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Willowby Billysmum
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Hi. You sound just like me. I get the tiredness & have to get up so many times a night to pee it's crazy. My doctor has now given me blood pressure medicine because they say you need to be careful when you have ckd as a high bp can further damage your kidneys. My blood pressure was always really high so thats something you will need to watch out for. I have to have more blood tests this week & then go back to see the doctor a week later. Good luck.
richard87134 Billysmum
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Ditto, i'm stage 3, gfr various from 55/63 but have symptoms, frustrating knowing that apart from the high BP meds there's not too much they can do, i have small membrane disease which aches and burns so have to stick to low fat foods with no salt but love chocolate whoops...
helen54849 Billysmum
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Hi,
Regarding the breathlessness can I just chime in. CKD patients have issues with iron or the lack of it. When you get to about stage 3 this is when it usually starts. I would ask to get your iron levels checked as this could be the course of the breathlessness. It can be easily treated with iron pills, these I was told should be taken for no more tan 3 months, I was told by my neph if they haven't worked in this time they are not going to. When I was stage 3 I had low iron and breathlessness like you and iron tablets didn't work so I had an iron infusion and EPO that sorted me right out for a good 18 months. Its worth an ask and you will feel better if it is the issue.
Billysmum helen54849
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Hi Helen,
i have had FBC done when I first went to GP about feeling breathless but he didn't suggest iron so I assume haemaglobin is ok. Have had repeat FBCs since and still GP not commented on anaemia.
had another blood test done last week so waiting for results. GP has also referred me for ultra sound. My mother died at quite a young age from kidney failure so I think he is being cautious.
helen54849 Billysmum
Posted
Hi,
Have you asked out right what your result was? anything over 10 or they sometimes report it 100 is ok. If its ok there are other things that can cause breatlessness, like vit b12 issues and lots of other things. I think sometimes you have to ask doctors direct questions as they are not forthcoming with information.
An ultra sound doesn't always give an answer anyway. The only sure way if you have concerns is a kidney biopsy. It is good that you are being properly checked though.
Is your breathlessness still the same or has it improved.
Sorry for the late reply, even though I have checked my settings my email notifications have stopped for some reason.
I hope you are feeling better.
david40108 Willowby
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Willowby david40108
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Hi
It's a shock when your egfr goes down like that. I've just had a blood test and i'm hoping mine has stabalised. I also have swollen feet & get short of breath. Good luck to you.
richard87134 david40108
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Hi David, my GFR seems to vary between 55/63 and i too have symptoms, mainly flank pain/ache and burn with fatigue. I wouldn't class your GFR as overly low yet you have symptoms, that kind of makes me feel a touch relieved as doctors have figured i shouldn't be getting symptoms with a GFR of close to 60 but at the end of the day we do have kidney disease and your GFR doesn't have to be below 30 for us to get them.
david40108 richard87134
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Richard, how is the flank pain? I've had intermittent lower back pain in the right side for several years. GP and Uro assured me it's not kidney buts it's where I had kidney stone pain. Feels a bit the same only much milder.
richard87134 david40108
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It aches quite a bit and if i eat too much salt it can burn constantly for hours, my consultant didn't think it was coming from my kidneys but i think that it is and it effects both sides exactly where your kidneys are situated. I was recently given a folate supplement which i also think is being caused by the kidneys as you can develop anaemia as the disease progesses