Struggling with Diabetic Stage 3 CKD- Some help needed

Type 1 and LADA
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I’ve been struggling with s.3 CKD for about a year and a half now, and I think it’s time to turn to the community for some help. This is still entirely new to me, and though I spend HOURS online trying to find remedies and diets and ways to modify my life to be kidney friendly, I am still struggling no matter what I try.

So far:
My medication regiment has been Torsemide (a high dose) and Losartan. After another LONG struggle to figure out what was aggravating the heck out of my migraines to the point where I had to go on leave from work (I had a migraine that lasted two months, no joke, no one could figure out what it was from. Until my mother said “Maybe it’s one of your meds.” Mother knows best, even when you’re grown!) it turned out to be the Losartan that was causing the migraine exacerbation. Switched to Lisinopril maybe two months ago, and lo and behold, it’s doing the same thing. There is apparently one more medication my nephrologist wants to try me on.

The OTHER issue I’m having is with the swelling/edema. This comes along with the CKD, I know, but NOTHING seems to relieve it. Not the Torsemide, not the Losartan, not the Lisinopril. I have modified my diet where I eat very low sodium. I’ve decreased my intake of fluids (both in the foods I eat and what I drink) to the point where I go around daydreaming of a glass of water all day. Nothing. This isn’t just some swelling. This is can’t put my sneakers on, can only fit into my scrubs, can’t bend my legs, can’t see where my ankles turn into my feet, joints in pain, swelling. Now, it isn’t just my legs, it’s moving up my back. You can push your thumb into my lower back and get a significant indentation. I’m around 109lb soaking wet, and my weight has increased to 135, and has gone as high as 138. I work in an ER, and one of my ER doctors told me that this isn’t normal. I have had other tests to rule other things out- had ultrasounds of my legs, went to see a cardiologist, etc… The weird thing is, when I first went on the Lisinopril, the swelling all but vanished completely. I don’t know if it was because I was throwing up constantly from the migraines and was dehydrated and in combination with taking the meds my body was able to absorb it more or something, but it only lasted maybe two weeks before the swelling started again.

I have an appointment with my Nephrologist this friday, but I’m at the point where I think I need to go and see someone else. I have brought up this topic of the swelling again and again, but she doesn’t do anything about it. She told me “You have to accept some of this swelling.” Ok. Got it. I can accept SOME swelling, but this is not normal. It’s making my life miserable. I can’t even fit into shoes anymore, even with compression stockings. This isn’t normal and my doctor is making me feel like this is something I have to accept about my life now and I need to stop beating the issue. ALL the research I have done suggests that this isn’t normal either. The medications should be helping, but they are not. At this point I don’t know what to do, but I feel that there is SOMETHING more that can be done, something that can be tried. Only I am so new to kidney disease that I don’t know what kind of treatments to talk about with my nephrologist, or a new doctor if I go to see one.

I have other questions, also, that are going unanswered, and when I ask my doctor, she literally tells me to go do my own research. (Cool, thanks.) She told me that all diabetics will eventually need kidney transplants (??) If all the medication I take to protect my kidneys gives me debilitating migraines, and I have to go around with my legs and back so swollen that I can barely bend anything, then why can’t I get a kidney transplant right now? Why do I have to wait until I’m in kidney failure (which according to some may never happen, or take years and years) in order to get a new kidney? My blood work tips me just at the stage 3 point, there should be no reason my life is miserable like this.

So… Has anyone else had a struggle like this? What can you guys recommend I do?

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I don’t have anything to offer regarding your health situation except to say, we are currently dealing with a pulmonary disease diagnosis (or three) for my husband. He has had so many differing opinions from doctors and so much confusion surrounding everything, that he is getting frustrated. He wants the best plan for care, which of course is what you want. I hope and pray you get your answers and you find some improvements and relief coming your way. It seems nowadays we do have to do our own footwork. Too bad it has to be that way. If we persevere I think eventually we may find one or two people for our medical team who can help us. I hope you find the same help as well.

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Thanks so much for the encouragement and the prayers, I hope you and your husband can find the answers and the help you need as well! Prayers and well wishes to the both of you, too!

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I’m so sorry you’re going through this! I don’t have any personal experience with kidney disease, but I do think your idea of getting a second opinion is good.

I’ve had instances where my doctors chose to blame a symptom I was experiencing on my diabetes, despite my requests and complaints. There were actually totally different causes that we’d never have tested if I didn’t do all the work myself and seek out my PCP’s help instead of my endos.

Getting a second opinion when things aren’t working well is always a good idea. Find a doc with lots of experience treating patients with kidney disease AND diabetes.

I wish I had more advice! Hopefully a few others on here with more experience with this will chime in.

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You have to expect some oedema with declining renal function, though from what you describe, it seems more consistent with stage 4 than stage 3. The captopril class drugs are the best thing to take, as you are already doing, since they not only reduce increased blood pressure in the kidney, but even act as nourishment for the kidney and help slow the progression of diabetic kidney disease. Anything to keep the overall blood pressure low will help, and avoiding salt entirely should be considered.

A low-protein diet is often recommended to slow the progress even further, but some nephrologists feel that this makes the patient too debilitated by the time dialysis has to start, so they recommend a less severe protein restriction. About half a gram of protein per kilogram of body weight may be suggested.

Once the process of diabetic nephropathy is underway, strict blood sugar control does not help much, and there is now good evidence of a strong genetic determinant of which diabetics will develop renal failure and which will not.

Some research indicates that anything that suppresses the inflammatory process that goes along with diabetes may delay renal failure, so taking something like vitamin E, krill, or astaxanthin wouldn’t hurt. Experiments with rats have shown some benefit from drinking heavily hydrogenated water in preserving renal function, so you might want to buy one of the many devices to produce hydrogen water and drink that. But all these are just shots in the dark given the present state of research.

Different nephrology centers have different rules for when patients are eligible to be put on the transplant list, but it is now generally accepted that patients should be on the list prior to starting dialysis. Unfortunately, the wait is now very long almost everywhere, and as the health of patients declines on dialysis, since the process only replaces about 10% to 14% of normal renal function, many people become medically ineligible for a transplant before one becomes available for them. The worst case scenario is if the patient has to remain on dialysis so long that there dialysis access becomes impossible due to collapse of the veins, but this only happens after many years on dialysis without a donor. So it is imperative to recruit donors now by asking family, friends, members of your church, or even for altruistic donors, if they are permitted in your jurisdiction. Some people have even bought space on billboards advertising for donors, so don’t be embarrassed about getting people to sign up, since not everyone who offers will be found medically eligible, either because their health is not adequate or they are a poor HLA match, or fail the cross-matching test.

Good luck.

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Have you tried compression socks?

Are you on a transplant list, or do you have to wait until stage 4? Your so young. I know that the U of MN does pancreas transplant at the same time as liver…possibly kidney. I think University of Washington state also does. If you ever need somewhere to crash for free, if you come up to Minnesota to talk to the Mayo (Rochester, MN) or or University of Minnesota (Minneapolis), you can stay at my place for free. I got an extra room.

https://www.mhealth.org/care/treatments/pancreas-transplant-adult

https://www.mhealth.org/care/treatments/kidney-transplant-adult?gclid=CjwKCAiAlfnUBRBQEiwAWpPA6X5YJRbrwMKMce9tS7HsyoY0FYloS_l_45_21urstssppkjO3ngQbhoCxlAQAvD_BwE

My dad was recently diagnosed with stage 3 CKD. He is also struggling with swelling. I was able to schedule and get him into the Mayo very quickly, compared with other hospital systems. They were very thorough. Although, there has been some fighting between them and the insurance company for what they will pay for. Current bill is about $2,000. But, the Mayo is fighting it out with them.

P.S. Minnesota is a pretty fun place. We have Charlie Parr and a couple of palaces made out of snow.

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Perhaps you could speak with @Thas.

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This is great information, thank you!!

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Yeah, everyone says I’m so young, it’s because I took minimal care of my diabetes for 14 years. I was diagnosed when I was a child and didn’t see how it would affect me later in life, I just wanted to eat skittles and pretend I was normal. Suffering for it now.

I have tried compression socks. All they do is move the swelling to my knees to the point where I can’t bend them. I even tried compression stockings, and it moved all the fluid to my lower back and abdomen. I’m looking for a way to get the excess fluid OUT of my body, not move it around, you know? Very frustrating.

I’m talking to my current Nephrologist about transplants, but I don’t have much hope for her being forthcoming with the information, nor do I have much faith that I’ll agree with her treatment plan. Went to see my PCP yesterday and he recommended another doctor for me to go and see. I don’t know why I’m even going to see her one final time, I guess it’s just to wrap things up.

Very generous offer, thank you so much! It will def be one of the options I explore. I have good insurance through my job, but I def don’t have an extra 2k to spend on a visit and testing. My plan right now is to see what this new doctor can do for me, and go from there.

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Have you had a renal biopsy? It may not be just diabetes causing it. Minimal change nephrotic syndrome has a chance of recovery, whereas diabetic nephropathy does not.

Your nephrologist would be doing you a great disservice if all avenues were not explored.

A rapid onset of symptoms might point towards a more acute cause, ie lupus, post strep GN, minimal change nephrotic syndrome. Some things might require specific treatment, like steroids (crap for one’s D, but might benefit kidneys) or immune modulators.

You may well have bog standard diabetic nephropathy, but your current symptoms don’t quite ring true for that… Sometimes doctors latch onto D at the expense of other potentially treatable causes.

I do not want to give false hope, but I’d be putting the hard word on my renal doctor to look harder.

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Don’t beat yourself up over having caused your diabetic nephropathy, since genetics can play a major role in its development:

Curr Diab Rep. 2015 Jul;15(7):41. doi: 10.1007/s11892-015-0610-9.
Genetics of diabetic nephropathy: a long road of discovery.
McKnight AJ1, Duffy S, Maxwell AP.

Abstract
The global prevalence of diabetic nephropathy is rising in parallel with the increasing incidence of diabetes in most countries. Unfortunately, up to 40 % of persons diagnosed with diabetes may develop kidney complications. Diabetic nephropathy is associated with substantially increased risks of cardiovascular disease and premature mortality. An inherited susceptibility to diabetic nephropathy exists, and progress is being made unravelling the genetic basis for nephropathy thanks to international research collaborations, shared biological resources and new analytical approaches. Multiple epidemiological studies have highlighted the clinical heterogeneity of nephropathy and the need for better phenotyping to help define important subgroups for analysis and increase the power of genetic studies. Collaborative genome-wide association studies for nephropathy have reported unique genes, highlighted novel biological pathways and suggested new disease mechanisms, but progress towards clinically relevant risk prediction models for diabetic nephropathy has been slow. This review summarises the current status, recent developments and ongoing challenges elucidating the genetics of diabetic nephropathy.

Because of the association between the genetic factors causing the development of type 1 diabetes and the disposition toward autoimmune disease generally, type 1 diabetics are prone to develop many different autoimmune conditions, such as multiple sclerosis or Wegener’s vasculitis. Since some of these diseases can cause renal disease, it is worth investigating other reasons for the decline in renal function, especially if it has not developed gradually, as diabetic nephropathy would.

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My doctor has not even mentioned any of this to me, but now I know to ask her. I just got lab results back and within maybe a month and a half, my kidney function has significantly decreased, and my anemia has gotten worse, yet my A1C is GREAT.

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Eh, I do beat myself up about it. Genetics might play a part, but I think going around with a 14 A1c for years played a bigger part.

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Rapid progression of diabetic nephropathy can be a thing, but that rapid? Time to find a new doc I think.
All efforts must be made to halt progression, and if other causes of kidney badness are not investigated, then opportunities for specific therapy might be missed.
I work (as a doctor) in an area of extremely high kidney badness (Outback Australia), and rapid progression is not unheard of, but a slow steady decline is more usual in sole diabetic nephropathy. We certainly see rapid progression with lupus (huge rates of lupus in young Aboriginal women), Wegener’s, IgA nephropathy, and lots of little kids with post strep glomerulonephritis (they usually recover quickly - but have huge temporary issues with oedema and fluid retention and blood pressure and weird cholesterol). We find 2 or 3 cases per year of that, plus Rheumatic fever, which has a similar cause.
You screwed up your control for some years - so what? It isn’t ideal, but I was diagnosed in 1978, and control involved mostly not being dead or in hospital. I didn’t have an HbA1c even done until I was a teenager, so it is mostly luck and genetics. I have good kidneys, despite years of indifferent control. I’m lucky, end of story.
Oh, and if you haven’t already stopped taking it for pain - Ibuprofen can worsen renal function and oedema.
Good luck getting a sensible nephrologist - you deserve a good one!

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With respect to the genetic contribution to the etiology of renal failure in type 1 diabetes, I had no control of my blood sugar levels for the first 20 years of my illness, since I was diagnosed in 1966 and home glucometers only became available in the mid-1980s. I used to go into the Joslin Clinic in Boston for a one-week stay every five years, and when patients arrived there, they used to have a blood test, and I remember mine always used to be in the 200s. I expressed my concern to the staff about such a high degree of hyperglycemia, and the answer I always got was, “Don’t worry, most patients are much higher.” The first HbA1c test I had was in the mid-1980s, and the result was 12. So my blood sugar control was as bad as yours for a much longer time, as was everyone’s back then, and yet I never developed diabetic renal failure, nor did most people who lived with those sky-high blood glucose levels for all those decades.

But I had genetic luck, since of the five other close relatives I have who have had type 1 diabetes, none of them developed renal failure, since it is simply not part of the genetic cluster we inherited along with the genes predisposing us to develop an autoimmune attack on the pancreatic beta cells in the presence of some unknown environmental trigger.

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I have stopped taking Ibuprofen. Who knows, that could have contributed to the renal issues, because I took a lot of it every day for many years! The results of my blood tests lead me to believe that some of this might be non-diabetes related, as my HbA1c is the best it’s EVER been, and has continued to get better. (7.9. Not perfect, but it keeps dropping every time I get it done so I know my control isn’t getting worse.) Right now I am looking at the small possibility that the ARB and the ACE were damaging my kidneys rather than protecting them. I have read that it can be the case. The other culprit might be that I came back pretty anemic at 6.9. Ive been anemic with no symptoms for my entire life, and even now, I have no fatigue or shortness of breath or anything. However my doctor said that the renal failure might be due to the anemia, as that would mean that my kidneys arent getting the proper supply of blood. I also started doing my blood pressure, and it looks like I’ve been running pretty high. I work in an ER and we have admitted people for HTN for the readings I got today (179/103) Seems to be a problem only when I am lying flat for a period of time. I believe I was tested for a kind of Lupus a while back, but that might also be something to explore. I don’t want to get a blood transfusion, but my iron levels are much too low to receive Procrit, so my next course of action is to receive iron infusions for the next few days/weeks, check my levels, and if they are okay, I’ll be getting the Procrit.

I have fantasies that maybe all of this is acute rather than chronic, but it probably isn’t. Still, I’ll be happy if I can just slow this rapid progression and get on some medications that actually work for me. Thanks for this info, it’s a huge help! @Seydlitz , you as well. Weird to hear what they were doing for diabetes in the 60’s, as I was born in 88 and didn’t get diabetes until 2000. I’m actually reading a book on the history of diabetes and how it was discovered and early treatments. Excellent, excellent read, but I’m only to about the 1600’s or so as far as the time line. It started with the Egyptians. Great reading, really.

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Failing kidneys will cause your blood pressure to rise, but increased blood pressure will also promote the progression of kidney failure, so it is difficult to distinguish cause from effect. But if your blood pressure problems clearly began before renal problems were detectable, blood pressure could have been a cause rather than an effect.

Anemia is a classic symptom of declining renal function, since in addition to all the many other things they do, kidneys also produce erythropoietin, which supports normal hemoglobin levels. You should be taking one of the many forms of synthetic erythropoietin to boost your hemoglobin levels, though correction to normal values is dangerous, so expect your doctor to permit a hemoglobin level of no more than around 110, rather than the normal 120 for women. (For men the normal values are around 140, so they are in an even worse situation with renal failure, since their anemia has to remain even more severely uncorrected.) You will have to take an iron pill in order for the synthetic erythropoietin to work.

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Hello! I have been CKD for 4 years now in stage 3, pretty close to stage 4. I suffered from sever edema for the first 2 years and I couldn’t figure out why. It was one of the blood pressure medications I was on. I would suggest asking your doctor if you could switch things up to find the right combination that works. I currently take lisinopril, astorvatin, and a biiiggg dose of torsemide to keep the swelling at pay. Now instead of everything being painful and swollen I sometimes maybe get a little swelling in my ankles. I also dealt with migraines caused my medication. I got a daith piercing in both ears which is a pressure point known to help with migraines and it has cut all headaches down to maybe once a month. We could be twins on our diabetes journey to CKD so I hope this helps. I have had so many doctors just assume I knew what to do or what they were talking about and I learned fast that you HAVE to bluntly tell them you need a bigger explanation and you need a different plan of action. Good luck to you!

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Please tell me that you have been throughly screened for celiac disease. I only presented only with life-long anemia when I received my celiac disease diagnosis. Some 10% of TD1s can develop celiac disease at any time. It is systemic and like Lupus and many other autoimmune disorders, it can affect many organs beyond the gut.

Insist on a full celiac panel.

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I spoke to my doctor, and FINALLY my anemia is being addressed. I’ll be going on an EPO as soon as I finish Iron infusions. Apparently, I’m extremely iron deficient, so once my iron is up, I’ll be getting Procrit to boost my hemoglobin. My nephrologist believes that the reason my kidney function has gone from bad to worse is because of the anemia. She also gave me a medication (forgot the name) that I’m to take half an hour before the torsemide. I’ve noticed a small amount of change. The Lisinopril has also been switched to Diovan, but I have small hopes that this is will not cause me headaches also, since it’s listed as a side effect. I have read that it works better along with Amlodopine, which I am also on, so I have some hope that it will help with the swelling issue.

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