GFR falling, creatanine rising, I'm panicking!
Posted , 7 users are following.
Hi all, Sorry this is a long post... I hope someone will have some idea of what is happening to me! I am a 60 year old woman with no history of kidney trouble. I am not a diabetic, blood pressure normally fine, not overweight, no alcohol/smoking, healthy vegetarian diet all my adult life, daily exercise. I don't use NSAIDs at all, just paracetamol in moderation. I do have autoimmune Hashimotos thyroid disease (underactive thyroid), since about 9 yrs ago, and take the meds for that, but I still have problems with hypothyroid symptoms, and have been referred to a specialist for that. I also have been diagnosed with fibromyalgia several years ago. So the only meds I take are levothyroxine and paracetamol. Anyhow, that's my background.
My routine kidney function tests have always shown eGFR at >90. It was >90 in Feb 2016. The next test in Oct 2016 was 88. Then this year in Jan it was 75, then a little up in March at 77. Now, in June, it's down to 68. Creatinine has risen from 57 in Feb 16, to 81 now in June. With a GFR drop of 9 in just 10 weeks, I am worried that my next test will go below 60. The total drop is 22 in 18 months. Surely this is not OK? I know kidney function declines with age, but at this rate? I dont know what happened between Feb and Oct last year to injure my kidneys. I did have a bladder infection and a course of ciproflox in that time period. Could this have caused kidney damage?
I am to have another blood test in 6 weeks and have a urine test to do for blood, albumen and protein. I bought some urine dipsticks, and occasionally get a slight trace of protein indicated, other times nil. When I say slight trace, I mean the little green block gets a tinge of darker (trace) colour around the edges. Does anyone know what a decline like this represents? I wonder if I have some sort of autoimmune kidney problem related to the thyroid, but I guess I have a long time to wait to find out. Any comments/ideas greatly appreciated. Thank you so much.
0 likes, 29 replies
VictoriaRoy
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PS I had a pelvic untrasound in Feb this year for my bladder. I was diagnosed with 'painful bladder syndrome', and at that examination, the report says my kidneys appeared 'normal', so nothing to see on ultrasound, anyhow.
LynQ VictoriaRoy
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The first thing to say is that kidney function declines naturally with age and few people have 100% function. However, NICE kidney disease management guidelines say that anyone who has a decline of 10% in one year needs investigation. At 81% however, you have no need to worry yet. I see that you have a blood test coming and your eGFR (which is only an estimate and is affected by many things such as whether you were well hydrated when you had thetest etc) may well have stabilised. Normally folk with your GFR are not likely to have any symptoms at all and even at Stage 3 many people never progress further. I understand your concern though and hope you get a better result soon.
VictoriaRoy LynQ
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Thanks Lyn, that's encouraging
. I was just freaked out by the continued fall, with subsequent tests. And if it can drop 9 in 10 weeks, I worry it will drop another 9 in the next 10 weeks. I do tend to worry in advance! I will have the urine test next week and the bloods in 5 weeks time (I'm due a thyroid followup blood test then, so figured I might as well have the kidney function test then too at the same time). I will report back here 
KenR VictoriaRoy
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Take a look on the net, there are reported cases of Cipro having an adverse effect on kidney function!
My family have had severe adverse reactions to Cipro!
KenR
VictoriaRoy KenR
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KenR VictoriaRoy
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I think that it is the unpredictability of an effect by Cipro that is worrying! However in my case although my eGFR fell to 51% really I felt no different. Since then I had to have a kidney removed because of cancer, and now have eGFR of 30% and I do have some effects on some days - bouts of real tiredness-. So on the plus side I would hope that your kidney function will stabilise out at a reasonable level and probably you will just need to eat carefully, watch weight, and walk as much as you can! I did not bother worrying when at 51%, and just got on with life! Best of luck, KenR
VictoriaRoy KenR
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Thanks Ken, yes I think the effects of so many drugs can be extremely toxic. Sorry to hear you lost a kidney to C
I hope you are OK now. I try my best with exercise, with walking my dog daily for at least 30 minutes, and stay as active as possibile the rest of the day. But fibromyalgia and Hashimotos both cause awful fatigue. and have many cross-over symptoms. I don't think I have any kidney-related symptoms. The painful bladder syndrome is a nerve-pathways thing realted to fibro and apparently nothing to do with kidneys. I will try to stop worrying! 
Mary4556 KenR
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KenR Mary4556
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well I am not sure that this will be a lot of help, but I went through the same process 3 months ago, having my right kidney removed due to RCC. I had not had previous kidney problems. After the nephrectomy my eGFR was measured in hospital at 27%, and has slowly crept up to 32-3%. I asked my Gp for regular kidney blood tests, initially had them every 2 weeks, but now extended to monthly.
It is usual for your eGFR to improve a bit as your remaining kidney improves its function. Apart from days when overpoweringly fatigued I feel OK- the Consultant says this is quite usual. The thing to be careful about is avoiding anything which may damage your remaining kidney function. I have found that this is largely being extra suspicious of any medications! You will find that many common meds are hazardous - I look up every med on the internet for its effect on the kidney before agreeing to take it and if necessary discuss this with my GP. Otherwise it is just a case of keeping hydrated, eating sensibly and monitoring your BP as high BP is detrimental. So regular blood tests, careful with meds, drink plenty, watch BP, and keep active! Good luck,
KenR
KenR VictoriaRoy
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well you are starting off on the right foot. Dogs are great- I have 2 labs and they insist on taking me for a long morning walk as it is good for me! Since my kidney removal I too get these overwhelming tiredness events, but they wear off and I can get useful time every day which I am grateful to have. Really even with aches and pains I enjoy life and I realise there are lots of people worse off than I am!
I hope that you can put worries aside, and do whatever works to enjoy life as much as possible. Friends, family, and time to do stuff for yourself - that does not leave much time to worry! Keep positive!
KenR
VictoriaRoy KenR
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Hi Ken, yes your labs will make sure they get you out and about! My Amber is a collie breed, so needs plenty of exercise. But it's mid winter here and I feel the cold really badly, so I tend to cut walks a bit short if there is a howling southerly blowing off the sea, or if its raining. A bit of sunshine today, so am going out. Thanks for your helpful thoughts.
KenR VictoriaRoy
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Hi Victoria,
thanks for the reply. I have found that advice from people with similar problems has been very helpful! It is all too easy to become immersed in the medical technicalities, but the truth is that when we have multiple problems the docs cannot give us certainty. One sensible specialist that I saw said 'keep fit and do not be afraid to push yourself!' That is what I try to do, and it does help with the mental stress too!
Best Wishes, KenR
VictoriaRoy KenR
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Yes, that's good advice! Recently a rhematologist gave me some sheets of paper with appropriate exercises written out, and he had added "Plus some fun and laughter every day". And he said to me "I prescribe Mister Bean". I have tried to stick with that and I must say that many an otherwise bad day has been much improved with a dose of Basil Fawlty, Mister Bean or Frank Spencer.
KenR VictoriaRoy
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Sounds like good advice too! I think that some unfortunate people can think of nothing but their illness which certainly does not help them!
So keep laughing, and do things you enjoy and problems then go into their correct perspective!
KenR
MrsO-UK_Surrey VictoriaRoy
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Hello Victoria
I can so empathise with your present situation. I would strongly suspect Cipro as being the culprit after my present experience with another UTI drug - Trimethoprim. Cipro has been considered for me but because a similar drug, Cefalexin, landed me in hospital recently with C.Diff, the Cipro was discounted. Trimethoprim has just raised my sole kidney function creatine firstly to 130 and a few days ago to 160. At creatine 130, my eGFR dropped from 38 to 28%. Heaven knows what my eGFR is at this moment but I have just completed another course of Trimethoprim so if my kidney consultant is right my levels should start improving. I have had UTIs permanently since February so have been on a variety of drugs since then, and I'm someone who hates taking drugs! Have just had a small growth removed from my bladder this week after an ultrasound to look for a cause for the UTI's revealed a possible bladder tumour - now it's a worrying waiting game waiting for the results! They also said my bladder entrance is small which could also be the reason for the UTIs.
Lots to of good luck wishes to you in getting to the bottom of whatever is causing such a fluctuation in your function. The best news would be that it stabilises soon but please try not to worry at this stage as you still have what is considered as normal kidney function for your age.
VictoriaRoy MrsO-UK_Surrey
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MrsO-UK_Surrey VictoriaRoy
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