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Concerned about kidneys

R

rosemaree

Member
Messages
6
Type of diabetes
LADA
Treatment type
Insulin
Hello,

I have been having some issues that have made me a bit worried about my kidneys, my doctor seems to just fob it off, and I will only be able to try see someone else next year.

I was just wondering what types of symptoms others have had related to their kidneys, and was it because of infection, stones, or CKD?

Thanks
 
Hi rosemaree and welcome to the forums.

I'm T2, so this might not be of much relevance to you. I had some kidney complications prior to diagnosis starting with comparatively low HbA1c levels - around 44 or so. Basically my kidneys almost stopped working, and needed a daily chemical push to do anything much. That was as far as it went with my doc. I had severe oedema, water retention, bullae, water blistering, fluid leaking through my skin etc as a result.

This all went away fairly quickly - within a few weeks- once my BGs were back to normal.
 
Hi @rosemaree Welcome to the forums.
It is difficult to comment without knowing what issues are worrying you. All I can say is that whatever the issues are, try your best to keep your blood glucose between roughly 4-7mmol/L and avoid double figures where possible. Higher readings can occur through illness and stress, so don't panic when the level goes higher. As a patient who first was notified of kidney problems in 1973, I lasted 40 years without dialysis and then had a transplant. With careful control it is possible to keep deterioration in abeyance or at least slowed down appreciably. Part of the problem is that symptoms are not noticeable for many years (in my case). If you have noticeable symptoms, it would be useful to know some detail. I wish you the best of luck
 
@KennyA Thanks for the response, it is great that it all cleared up so quick!

@Grant_Vicat Thank you! I have been trying to keep my blood sugar in range after some time of having largely given up, it works for a while, and then like this week, I am back to highs and spikes that I can't fathom. Regarding my concerns, I noticed a change in the colour of my urine a while back, it seemed to happen on and off, and I eventually noticed blood too. I am not very good with feeling pain in my body - I am either overly sensitive or completely numb to it, but I have been trying to pay attention and noticed I often have pain in my mid/lower back. About a month or two back I had an episode with such extreme pain that I nearly passed out. I am also battling with waking up feeling puffy, and then being nauseated all morning, which I have seen referenced to kidney issues.
 
rosemaree said:
I was just wondering what types of symptoms others have had related to their kidneys, and was it because of infection, stones, or CKD?
Click to expand...
I had a kidney stone about three years ago which had grown big enough to cause a blockage. Boy that was painful I think you’d be very aware of a problem caused by stones which were causing any problem.
 
If your urine is dark, it could be that you are dehydrated. If drinking lots of water doesn't fix it, then it may indicate a urine infection, in which case you need to take a urine sample to the GP surgery. If you have blood in your urine, take a urine sample to your GP surgery.
 
I completely agree. I would also suggest that if @rosemaree is being fobbed off with these symptoms taking place, I would head straight for A&E without waiting for a reference. I have had to do this 3 times in 45 years.
 
Rachox said:
I had a kidney stone about three years ago which had grown big enough to cause a blockage. Boy that was painful I think you’d be very aware of a problem caused by stones which were causing any problem.
Click to expand...
When I experienced kidney stones I collapsed and an ambulance was called. The paramedic said "I believe this is more painful than giving birth. Since we were both male I took his word for it!
 
Thanks @Rachox, I was worried my weird pain perception would make it harder to tell, I realise I have had more than a few experiences where others would rush to a hospital but I just suffer it.

@ElenaP I do worry about dehydration as I sometimes experience extreme nausea with drinking water and find myself avoiding it, but drinking water does seem to help get things back to normal, the blood is what made worry that it was something more though. I am due for more tests in January. and I was given a urine test strip to use at home and then sent the Dr a picture - but I haven't been able to get any feedback as to whether it showed any issues.

@Grant_Vicat I am unfortunately not in the UK, and I am a little terrified of our emergency services! I will have to chat to my insurer to see if I can get to a different doctor,

Thanks,
 
Daisy_Daisy said:
Kidney stones are caused by high OXILATE levels in your diet..
Click to expand...
As said further up this thread, I had a kidney stone a few years ago. It was analysed and found to be 95% oxalate with the rest being calcium, so I was advised to lower oxalates in my diet. It’s not necessary to reduce oxalate in your diet if your stone is found to be predominantly calcium.
 
Glad you were able to reverse you T2 Diabetes, I am trying, just having tests, C-Peptide & GAD..Hba1c 86
Very painful kidney stones, had them once, have CKD 3b..
 
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Hi Grant,
I've recently discovered that I have stage 1 CKD, you mentioned you first noticed symptoms in 1973, and 40 years later you had a transplant..if you don't mind me asking what were your levels like in 1973 and up until you had your transplant? I'm doing all I can in terms of BP and BG control to delay or stop progression.

My ACR is below 3, with the help of a high dose ARB and my egfr is above 90 but I'm scared for my future..how likely is it that I will have to go on dialysis.

I suffer from retinopathy that has been lasered once, and high blood pressure which stays below 120/80 with the help of the ARB.

Wising you all the best, thanks
 
Hi Hana,

There's a lot here to think about. First of all I understand your anxiety. If you are doing your best to control BP and and BG readings you stand a better chance than I did. Bearing in mind I was diagnosed Type1 as a baby in 1959, the treatment then amounted to "We were grateful to keep the likes of you alive, but there was a lot of guesswork." I was very poorly controlled for the next 20 years. In 1971 I was already getting blurred vision because of high blood glucose over long stretches. By 1973, when I was just short of my 15th birthday, I was told that I was showing protein in urine. I had no idea of the significance of this remark, and it wasn't elaborated on. In those days the only tests which could be done outside the hospital were urine tests, which were far from helpful. Anyone with a meter now can tell what fluctuations are occurring over a short period of time. In front of me I have a hospital chart from September 1966.The only indication of glucose is all from urine tests (Clinitest) which were taken at 07.00, 11.30, 15.30, 17.30, and 22.00. Taking just 26th September the readings are 2% sugar, +++ ketones; 2% sugar, +++ ketones; 1/2% sugar, free of ketones; 2% sugar, ++ketones; 2% sugar, free.
There were many days like this until I went to :London University. King's College Hospital, the leading diabetes centre in the country at the time, informed me of retinopathy in both eyes, for which I underwent laser treatment from 1979-1983. They also started to take very careful notes about kidney function. I was also advised to take my regime very seriously, lending me the first testing meter I had seen. It was far too big for any pocket! But this completely revolutionised my understanding and attitude. At various stages they put me on hypertension drugs including Indapamide, Enalapril and Irbesartan. By 2000 I was referred to Addenbrooke's Hospital where they estimated 5 years until dialysis would be necessary. In 2012 I was put on the waiting list for a pancreas/kidney transplant. In July 2013 I was asked to turn up to the Nephrology Department to initiate dialysis. This never happened. After 6 failed attempts I had my kidney/pancreas transplant on 13th-14th August.
The secret of all this was taking strict control back in 1979, thanks to a diabetologist/ophthalmologist who gave me a good kicking. I owe him so much. I would like to point out that regimes today are incomparable and current technology was unimaginable even in 2000. With your attitude I am sure you will stand a good chance of avoiding so many horror stories.
Wishing you the best of luck
 
Thank you for taking the time to explain in so much detail.
I feel so worried about the future, it helps to talk to people who have been through the same.
 
@Hana25 please try not to worry, my kidney function dropped 7 points in a few months recently to 67. My bloods are being retaken in 2 months. But I don't let it worry me as there's no point, all I can do is make sure my blood sugar and blood pressure have excellent control. Yes if things progress at the same rate I'll be in kidney failure in a couple of years but I feel well at the moment and hopefully that won't happen. According to the NHS only 1 in 50 with CKD progress to kidney failure so the odds are well in my favour. Of course I'd rather my kidneys were functioning normally but it's really pointless to worry about it, I try to enjoy my life now.
 
You seem so strong, I am always so full of anxiety and stress, I can't sleep, I'm hardly eating...I am always grateful for the NHS and the care it provides. Every morning I tell myself to enjoy another day of good health, but every moment is focused on googling things online about CKD.

Do you mind me asking how you got CKD?

I have been a type 1 diabetic, for 20 years, and I've had hypertension for 3. My ACR is within normal range right now after taking and ARB, and my egfr is above 90 but all my mind focuses on is that as I get older the disease will progress.

I will try my best to be hopeful and positive for the future.
 
Oh Hana. I'm not strong, I did come back to edit to say at the beginning I was very worried but I thought what's the point, I'm 67 if the worst happens I want to enjoy my life while I'm feeling well. I was pre diabetic 17 years ago and have maintained normal blood sugar since, I've always had a normal BMI and exercised, I have to be really strict with my food to keep normal readings. There's late onset type 1 as well as type 2 in my family.
The ckd came up in my Annual blood test, I've been in the early 80's for some time it's only recently gone down.
Do you have a family Hana? We look after our young grandchildren 3 days a week while their parents work. Honestly they bring us so much joy and don't give me time to worry about myself. Before grandchildren I used to volunteer in my free time at riding for the disabled, that was hard but fun and I've made a couple of good friends that I still see now. I am a worrier but I find keeping active stops me over thinking.
 
I'm so happy you find joy in life, pray I get there too, I'm trying to be mentally strong.

A bit of history about myself, I'm 32 years old, and from the UK. There is a strong history of type 2 diabetes and hypertension in my family but I am the only type 1.

I have a son, and I've been a type 1 diabetic for 20 years. I was diagnosed in my teens and I struggled with good control during those years. It was only after I was told I had issues with my eyes in 2022, that I seriously started to take care of my blood sugar and pressure. I consider myself fortunate that the medication I take for BP has slowed the progression of kidney disease and I am only at stage 1 of CKD. My cholesterol is also borderline but I've read Medications for that will also aid in slowing down the progression.

I regret my past, I decided not to have another child because I don't want to put more strain on my eyes and kidneys. I would love to have another child but I find joy in my son. I try to live for the future but I find my mental health is the real battle
 
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