Just exhausted....

[Winter1963]

Hi all. Does anyone relate? I am just soooo tired all of the time. It doesn’t matter how long I sleep for, it isn’t enough! I went to bed at 8.30 pm and woke at 10am and this is common for me but sometimes I sleep even longer. I am out of bed for no longer than half an hour and I need to go back to sleep. I have vitamin B injections but it doesn’t make any difference. Thoughts?

[Love101cats]

I look forward to some good responses on this one because it is such a common problem with failure of major organs. Often the first sign that anything is wrong., but it appears to be the hardest to tackle as most of us are on soo many meds already sleeping pills are not the answer and don't usually help. So my question is whether its totally hopeless to expect any return to a normal sleeping pattern

[Winter1963 in reply to Love101cats]

I’m only stage 3 so wouldn’t have thought it would be related as my kidneys are not bad enough yet?

[HopeKidney in reply to Winter1963]

Check your PTH levels. High PTH may be a cause. The high PTH is in many cases related to low vitamin D and high phosphorus, related to kidney failure. We are exactly seeking to treat fatigue due to high PTH that has started in the past few weeks.

[Winter1963 in reply to HopeKidney]

Our test names and parameters are a bit different in Australia and I’m new to all of this. I have researched CKD to the point where I am over it. What is PTH? My phosphate levels are within range albeit on the rise at 121 on my bt 6 weeks ago.

[Hidden]

Have you had a blood test ?

[Winter1963 in reply to Hidden]

Yes, nothing out of the ordinary other than the obvious egfr. GGT is high and protein is high and transferrin is low. Borderline high range for sodium, bicarbonate, urate, calcium and HCT. Borderline low range of bilirubin and alb/creat ratio.

[HopeKidney in reply to Winter1963]

Also with great fatigue. But with egfr 8. Not on dylasis yet. Since u mentioned GGT and only stage 3 - possibly have an ultrasound scan to make sure the fatigue is not from the liver.

[Winter1963 in reply to HopeKidney]

I’m starting to wonder if I even have ckd! Have a dr’s app. next week and will hopefully clear up any doubts I have. Liver function apparently isn’t fantastic but no tests other than bloods. I don’t like being diagnosed with anything without concrete evidence.

[Winter1963 in reply to HopeKidney]

Thanks. I think I’ll need to investigate further. It just doesn’t add up to me.

[KidneyCoach NKF Ambassador in reply to Winter1963]

If your transferrin is low then your t-sats may likely be low which may be direct cause for your fatigue. Ask about your t-sats (available iron stores). How is your hemoglobin?

[Winter1963 in reply to KidneyCoach]

It’s within range 151, igron levels are fine. Days are on the rise but within range.

[Bassetmommer NKF Ambassador]

HI Winter,

Often a issue with late stage CKD is anemia and low Vit D. Both of these seperate issues can cause a great amount of fatigue. They are easily diagnosed with a blood test. I would suggest it. Also, I am not sure if you have fluid restrictions, but being dehydrated will also make you tired. Sleep is a wonderful healing mechanism. So if you can sleep, enjoy it. I wake up ever three to four hours to pee. Sometimes even more often. I am able to go back to sleep for the most part.

[Winter1963 in reply to Bassetmommer]

I would expect it with late stage but I am only stage 3.

[Bassetmommer NKF Ambassador in reply to Winter1963]

You can have both low Vit D and Anemia without CKD. There is also low b12 which can cause the same symptoms and they are not related to CKD.

[Winter1963 in reply to Bassetmommer]

Would that give me a false negative egfr?

[Jayhawker in reply to Winter1963]

I had severe anemia while in Stage IIIa so it can happen at earlier stages. My hemoglobin, which should be no lower than 12,0, was 5.6. I was really dragging. I was winded just sitting up in bed. It took all the energy I had to move from my bed to the couch where I would often lay down and doze off again.

I was placed on an EPO injection. My nephrologist tried iron injections. He ultimately shifted me to an oral medication called Auryxia which I’ve been taking for 7.5 years now. This medication keeps my hemoglobin between 11.0 and 11.6 so has been a real game changer for me.

Jayhawker

[orangecity41 NKF Ambassador]

You do not mention what level of Kidney Disease you were diagnosed at. Many medical issues could cause fatigue, and CKD related is one of them. I was diagnosed at level 3 CKD and fatigue was one of symptoms. I was put on a CKD appropriate diet and prescribed a vitamin D supplement. Both seemed to have helped me. What bloodwork have you recently had? Best to consult with your Doctor about your your fatigue and discuss any blood test results, especially those out of normal range. Keep us posted on results.

[Winter1963 in reply to orangecity41]

High creatinine, low egfr, high GGT and high c reactive protein. Low transferrin. Borderline high range sodium, bicarbonate, urate, calcium and HCT. Borderline low range bilirubin and alb/creat ratio.

[rabbit01 in reply to Winter1963]

If you have high creatinine then by default you have low eGFR as they have an inverse relationship. In fact they don't measure eGFR in your bloods they just calculate it from your creatinine and a few other parameters such as age, sex and ethnicity but these have a minor influence and creatinine is the big part of the equation.

When it comes to fatigue then different people are affected at different levels of remaining kidney function. In my case I was still working full-time at 16% yet I know other people who felt very unwell with over 20% left. It's worth having your iron levels, vitamin D and haemoglobin checked. You may have low B12 which is quite possible with many types of autoimmune conditions causing kidney disease.

[Bluerabitt in reply to rabbit01]

I remember your old post about a year ago states that you egfr less than,how you improved on that?

[Bluerabitt in reply to Bluerabitt]

Egfr less than ten

[rabbit01 in reply to Bluerabitt]

Unfortunately I didn't improve on it. I started peritoneal dialysis almost exactly a year ago. It's going fine.

[Raclette in reply to rabbit01]

I like this reply and would a Multi Vit tablet help?

[suzell56]

Hi Winter1963! I too was the same way with needing to sleep all the time. My ferritin (iron) and PTH were off, I have had to add iron supplements to my daily pill taking but it has helped. Have your nephrologist run a bunch of blood tests to see. Yet like Love101cats says it is par for the course with organ failure. I too am only Stage 3 yet I lack energy and want to sleep. Good Luck.

[RhenDutchess123]

Might be sleep apnea too

[barbara55109]

Yep. I'm tired all the time. It is really difficult to keep working. All I want to do is sleep. I'm only at stage 4.

[Not_My_Real_Name]

Inflammation can be a big cause of tiredness/fatigue. Just look at when a person ages, especially the elderly, they tend to feel tired/sleepy more frequently. Inflammation affects mitochondrial energy production. I see that you mention high C reactive protein which is a sign of inflammation.

You do not mention what level of CKD you have which would of been helpful.

Inflammation and autoimmunity which usually go hand in hand can both contribute to kidney function reduction. Stopping that should stop further reduction in kidney function and might help restore some function over a longer period of time. That is caused by pathogens in the digestive system which cause what I prefer to call Increased Digestive Permeability (IDP) rather than the commonly used term which is incorrect called "Leaky Gut". The gut is naturally leaky by nature, it has to be or no one could live. It is the degree of permeability that matters. When permeability increases ie when the digestive system is attacked by certain pathogens where they create biofilms to protect them, it also causes the permeability of the colon to increase and when that happens LipoPolySaccharides (LPS) enter the bloodstream and these are extremely inflammation provoking. People doing research studies often use LPS to promote inflammatory processes while doing research because it is so effective at promoting inflammation. That is part of the problem but not the only one. The increased permeability allows undigested large food molecules to enter the bloodstream which the immune system reacts against producing antibodies which can promote further damage and have been linked with certain forms of kidney disease.

Before you go looking for solutions to IDP or searching for "Leaky gut", I will tell you that they are all false and totally inaccurate. L-Glutamine does not improve permeability because it is not antimicrobial and therefore cannot create much benefit.

There are herbs which can beneficially improve inflammation but seeing as you have CKD you will need to be careful what you use incase they put further stress on your kidneys. You will need to speak to your doctor before considering any of this.

One which works fairly well for me and is also known to improve energy levels is Cordyceps mushroom. Cordyceps mushroom can also be very beneficial in COVID-19 because of it's inflammation lowering effects and it's effect on lung function.

I have tried a number of Cordyceps mushroom varieties and found the Time brand to be useless. IMO it deceives with it's advertising about the Beta glucan content which it says is a percentage of the total polysaccharides which works out to be very low levels. I settled on Cordyceps Champion which I have been using for quite some time.

One thing which is effective against LPS is Boswellia Serrata (Indian Frankincense). There are two components which are most active and it pays to look for extracts which have guaranteed levels to be most effective. It helps stop the effects of LPS from causing inflammation within the body and helps to remove it.

A quote from my notes:

"However, KBA and AKBA have proven to be the most potent in downregulating the production of cytokines and inhibiting the enzymes responsible for inflammatory responses."

pubmed.ncbi.nlm.nih.gov/126...

[Winter1963]

Thankyou.....you are very knowledgeable. I am only stage 3, have not long been diagnosed although my bloods have been off for over 12 months. Our test names and parameters are slightly different in Australia so I get a bit confused. I have vitamin b injections every three months so would have thought that this would have kept me awake. I do have a form of narcolepsy called hypersomnia which I am medicated for. I suffer from severe clinical depression and anxiety and am on a myriad of drugs to keep that in check but my drs visits are often seen as me “having an episode”. I also took an overdose 5 years ago and I’m wondering if that could be the cause of my kidney/liver concerns?

[Kidneybongos]

Yeah sure do get tired prednisone got me busy for the first month but the side effects are really harsh I’m finding it really hard to walk straight and has buggered my eye sight so am weening off them after 6 months I feel they’ve done more harm than good, but that’s just me

[ismike1316]

I'm having the same issue. No sleep one night, plenty of sleep the next doesn't matter. I was just told today that I have Stage 4 kidney disease. Much of my lab results were way off but my doctor said it is all related. I'm tired of being tired.