fatigue and kidney disease

[yogachick2020]

i am in stage four kidney disease and am ALWAYS exhausted. my doctors aren't able to determine what is causing this part. Does anyone else feel this way?

[Mrs876932]

May be anemia?

[Panda68]

Hi, I started getting tired around that stage. Once they started managing my hemoglobin and iron levels better it helped improve.

They were just checking my counts here and there and “reacting” to them. My kidney doc and PCP were managing it and doing an OK job. But I was tired all the time.

When I finally went to a hematologist there was a huge difference. She makes sure my iron, hemoglobin, etc is in a certain range and I have monthly iron now.

Pro-active instead of re-active. I learned you need an expert sometimes even if it sounds like something simple.

I don’t know if you’ll have same result but I would def see a hematologist as a consult and see. Every little bit of energy helps.

[yogachick2020]

I’ve been tested for anemia and my iron was a little low. Started taking iron but that hurt my stomach. When I went for the next set of labs the iron was fine. Hemoglobin is a little low. But she decided not to do iron infusions. My next step is to see a cardiologist to make sure there isn’t something going on with my heart. But I will definitely check into a hematologist. I haven’t heard of that type of specialist before.

[Jayhawker in reply to yogachick2020]

I was wondering how your cardiac data looks. It sounds like you’re on the right path to get that information.

How is your stress level? How are you sleeping? When my stress elevated it will interfere with my sleeping. I don’t tolerate that very long before I’m dragging. Another issue that can really wear me out is when I’m up and down a lot at night using the restroom.

Sometimes the answer is relatively simple; not another medical issue...

However, I always check all medical issues out first rather than ignoring them 🐶🐶🐶 So I’d definitely be doing what you’re doing.

Jayhawker

[yogachick2020 in reply to Jayhawker]

I feel like I’m not stressed but I’m sure this IS stressing me out. I could sleep all day. I sleep ok at night. But I never feel rested. I am open to anything! I am someone who doesn’t really like taking medications and I’m now on three of them. But yes I reached out to a cardiologist and a hematologist today so hopefully I hear back soon and can cross those two off my list

[Jayhawker in reply to yogachick2020]

I’m hoping they’ll be able to figure out what’s going on for you so they can get it under treatment; you’ll feel better.

Jayhawker

[Herkidney]

I was definitely exhausted during that stage also. My nephrologist prescribed Procrit which helped a little but tiredness was just a part of my life at that stage. Someone suggested seeing a hematologist- wish I had thought about it and done it.

[Weatherwife]

My husband is in stage 4 and seems exhausted much of the time. He has been referred to a hematologist and will probably start epogin within the next few weeks. The anemia issue he has was blurred by a recent GI Bleed which made his anemia very severe. We were hoping his labs would improve, but his red blood cell count and hematocrit are very low. We have been advised to have him start treatment, but his GI doctor ordered a couple of tests to make sure that he is not still actively bleeding before he starts treatment for anemia. Of course, if the GI issues have returned we want to treat that first. His kidney disease has been a slow decline; he was first diagnosed in 2014 and for about four years it did not impact him too much. Now that the disease has progressed to stage 4 it seems like he fights fatigue, and sometimes light-headedness, much of the time. If he starts the injections I will let you know if they help. I wish the best for you.

[yogachick2020]

Thank you for sharing.

I’ve had kidney disease most of my life but didn’t put all of the pieces together (and neither did the doctors) until last fall so we aren’t positive when it started declining.

[Whitetail66]

I am currently in the same boat. I am not at stage 4 yet (3B, 37 GFR last test about 1 1/2 months ago), but am constantly tired, and my muscles get easily fatigued and sore.) I just saw a cardiologist last Friday, and just did a sleep test (haven't gotten results yet), and will go for a treadmill nuclear stress test. I too am wondering if there is a different issue that is causing my fatigue and muscle weakness/soreness. Unfortunately, I won't be able to get in for the testing until August 5th because of the backlog due to this stupid virus. My nephrologist is booked out until mid September. Never considered seeing a hematologist. I had a hard time getting a referral for a cardiologist.

[yogachick2020 in reply to Whitetail66]

I have been trying to get ahold of a cardiologist and a hematologist without much luck. Every time I call the office is closed even though it’s their office hours. I agree - getting appointments is a nightmare during this COVID stuff. Someone also recommended I see see a renal dietician. Maybe I’m not getting enough of the right foods. I just want to have more energy!

[Whitetail66 in reply to yogachick2020]

Good luck on getting a referral to a renal dietitian. I have had no luck with that, and was told that I couldn't see one until I'm on dialysis. One resource I have found helpful is Dadvice TV, which is a guy on youtube, who has a bunch of videos, and a website. He has a lot of helpful tips on diet and good foods, exercise, and other things. Videos are fairly short (20 minutes on average). I just want to feel like I did two years ago, and have a 'normal' day. I'm not much of a vegetable person, but love fruit, so I eat a lot of that. I feel better when I don't eat 'crap', and drink a lot of water, but that's me.

[yogachick2020 in reply to Whitetail66]

Do you have an hmo for your insurance?

[Whitetail66 in reply to yogachick2020]

I don't believe it has anything to do with the insurance, as two nephrologists have told me I don't need to see a renal dietitian until later stages. From what I have gathered on here, it's difficult to find a nephrologist who will refer a patient until dialysis is needed. If you have a nephrologist who will listen to you, and do everything they can for you, you're lucky. My new nephrologist (I have seen her once so far) took over an hour on my first visit, and seems to be promising.

[yogachick2020 in reply to Whitetail66]

Thank you. I will check it out.

[Jayhawker in reply to Whitetail66]

I had severe anemia when my eGFR reached 35. My hemoglobin was 5.6 with 12.0 the bottom of the normal range. Frankly, I was winded just going from lying to sitting in bed. It took all the energy I could muster to go from my bed to the restroom. It was unbelievable.

They tried Procrit with me first. Then an iron IV with the Procrit. Then my nephrologist shifted me to a medication called auyxia. That has been a major game changer for me, thankfully. Fortunately I’ve got no trouble (my stomach) tolerating this medication. I’ve been taking it for 5 to 5 1/2 years now.

Jayhawker

[Whitetail66 in reply to Jayhawker]

I will check my test results to see what I can find out. I would think that my doctor would have caught something like that, but I better double check. Did you have issues with muscles too? (Tired and achy, like they would feel after a workout) Thanks for the advice

[Jayhawker in reply to Whitetail66]

I don’t recall achy muscles at that point. I have developed them along with some joint pain as I’ve developed Hyperparathyroidism over this past year.

Jayhawker

[Love101cats]

I was so relieved to see these posts re kidney failure. I'm new to it but have had heart failure for two years at stage2/3. I was only diagnosed with kidney failure a month ago and am stage 4! How did I get there without stages 1-3? I've been having regular blood tests to check kidney function. This news has been really shocking to me. I lost my husband 6 months ago (heart,kidneys,diabetes,dementia) I haven't seen a specialist yet as I'm clinically vulnerable and can only go to hospital as an emergency. My diagnosis is all by phone and blood tests. GFR25. I've just done my first urine test. My g.p. is going to phone next tuesday. What do I assume? Help!

[Jayhawker in reply to Love101cats]

Boy, this must be quite the shock!

Definitely get your questions together in preparation for your appointments.

How are you feeling physically at this point?

Jayhawker

[Love100cats in reply to Jayhawker]

I am so exhausted all of the time. Yesterday I slept most of the day in my chair even though I had a good nights rest. I must admit I'm scared. With the heart failure I knew what lies ahead as it's a family weakness. My mum died of heart failure just over 3 years ago. But she was 96! I'm not 80 yet! Also it's hard not to have access to hospital support due to being clinically vulnerable. Phoning is not the same. They cant see your pallor, breathing rhythm, eyes, skin and so much more that can help with prognosis. So to be told you have a serious condition with an accurate diagnosis due to blood tests is the starting block. What happens next?

[Beverly945 in reply to Love101cats]

I just found out that I was in stage 4. I am diabetic and have blood work every 3 months so I was upset that I had not been told about my kidneys until now!

[7Aloha7]

Two things to check when you feel fatigue with CKD is your potassium levels and if you are anemic. Both can cause fatigue. If potassium is high, which is often the case with kidney disease, it can make you feel exhausted and lethargic. Same with anemia. There are potassium binders that keep the level where it should be. Also, when kidneys are low functioning, there is a lot of waste buildup in the blood which can cause fatigue.

[Love101cats]

Just to add to my previous comments I have had another hospital appointment over the telephone with a renal nurse. It was helpful but until I see a specialist and have a ultrasound I won't know what is wrong with my kidneys and neither will anyone else. So im on no medication for kidneys or diabetes but 13 tabs a day for heart and thyroid. I am permanently exhausted though i sleep well at night. The reduction in diuretics to help y kidneys is resulting in more fluid retention especially hands and feet and my bones are sore too. If i get out of my chair I get low back pain which is excruciating so can do very ,ittle activity. Im doing well with the diet and my HbA1c dropped from 52 to 48 and by GFR went from 26 to 28 over one month but im putting on 3 lbs one day then losing over the next two and so on. Its a struggle but ill do my bes.t

[Beverly945]

I am in stage 4 and I also get tired really fast. My primary care doesn't think it is from my kidneys.

[Hidden]

Anaemia, Low Iron, toxins in the blood, high potassium levels and low haemoglobin all work together to create fatigue and tiredness.

[Zoecarys in reply to Hidden]

Pls what is the solution? Because my husband is having the same issue.

[Hidden in reply to Zoecarys]

As kidney function declines the kidneys produce less EPO, although the nephrologist can order this as an artificial injection to raise blood oxygen haemoglobin levels. Low iron can be solved by eating more foods high in iron or getting an iron infusion. High potassium levels can be cut by eating low potassium foods, dialysis helps remove toxins in the blood if your egfr is below 15% or even less. The cure for all this in reality is a kidney transplant.