As from the title I am recently diagnosed with stage 3 kidney disease, my gfr is 56. I have been feeling off colour for a few years now with symptoms getting worse. I have weight loss, swollen ankles, shortness of breath, extreme fatigue, a need to pee all through the night, difficulty sleeping, Itchy skin, muscle cramps, headaches very clammy skin and night sweats, pain in right side front & back, potassium high. I have a problem with iron defiency and vit d defiency & my bp is very high at the moment. My gfr went down by 6 in one year don't know much about the years before. I suppose what I want to find out is how should my gp be helping me at this stage with all of the above. Has anyone out there maybe been in my position, or is in the same position that could help me.
I was diagnosed with fibromyalgia in 2002 but have always thought that the diagnosis didn't quite fit.
With all that is going on, my advice is ask your gp for a referral to a nephrologist.
Hi,
Your symptons will be as a result of the other issues at this stage rather than being CKD stage 3, the symprons come much later on. So your fatigue will be a result of having disturbed sleep during the night and also low iron levels can cause fatuge and breathlessness. Are you taking iron tablets? if so how long have you been taking them for? if longer than three months they are not going to work an infusion is required. If you are not on them ask your Dr why not. Next your leg cramps these will be a result of your high potassium, what are your levels? are you under a dietician? if not why not high potsssium is dangerous 5 is high having said that mine was a steady 7 before dialysis even wwith avoiding high potassium food but you can't just do this yourself as you need to be monitored to ensure it doesnt go to low (this is just as dangerous) also you don't usually get pain with CKD so ask your GP if you have an infection. What are your vit d levels have you been prescribbed tablets for this. I am surprised rreading your post with all the things going on that you are not being monitored? Has your GP put you on blood pressure tablets to bring down your blood pressure (CKD kidneys don't like high BP) finally try not to worry with a GFR of 56 you are only borderline CKD stage 3a and you don't get symptoms until much later on. I remained at stage 3 for years with no change and would love a GFR of 56! Mine is 6% people can stay at stage 3 and never move. You need to keep you bp under control to prevent further damage though and avoid ibuprofen and salt (also Low salt is bad) I would go back to your GP. You may have another under lying health condition that is causing your symptons. Good luck keep us posted
Hello,
If you have CKD t is very important to get your blood pressure controlled properly so I would start with this with your GP. You don't say hopw high it is, ut there are many different medications that can help you control it. Also, you need iron, Vitamin B12 and folic acid to make healthy red blood cells so if these levels are low, your doctor can prescribe iron, Vitamin B12 injections and folic acid tablets. This may well improve quite a few of your symptoms if you are anaemic. Having said this, your GFR is not that bad and may not get any worse as many people with CKD 3 find. Most people are relatively free from symptoms at your levels o your problems might be caused by the anaemia. It is certainly worth asking your doctor about these issues and if getting your BP under control and reducing your iron deficiency do not help, perhaps you should be referred to your local hospital for further investigation. I hope you find some help as these symptoms can be very frightening.
Thanks Kath. I am seeing the doctor next week so will mention the symptoms to him & see what he says.
Hi Helen
I was on iron tablets & my iron went up but it's now gone back down. I am permanently on vitamin D & my potassium is 5.2. My blood pressure is around 170/ 115 pulse 110 first thing, at around noon it maybe around 145/97 pulse 94 then the same later on. I am really worried about the bp. I am back to the dr next week so will see what he says.
Hi Lyn.My bp is 170/115 pulse 110 first thing, 145/94 pulse 94 later in the day, my potassium is 5.2 which sounds as though it's not too bad from the answers I have had. I am a little less worried now but would like to know how often they should check my blood in the situation I am in.
Fran
Thanks for all your help I am very grateful for the help.
Hi,
Yes deffo ask for meds for your BP there are loads of different ones so if like me you don't get on with one type ask to change, avoid candisartan as this makes potassium go up so you don't want that even your afternoon bp is too high and you may have to take 2 different types of bp meds to get it down I did but we are all different so ask to try some ramopril gives lots a dry couch but it is more annoying than anything else you can keep changing until you find something that suits. Do you exerscise as this helps even if you don't feel like it a 30min walk at least 3 times a week. My pulse was high like yours at around the end of stage 3 begining of stage 4 (even after morphine when it should of been low it was 120 the surgeons were most alarmed lol) Next your potassium it is high they like it around 4 as a rule. I would ask your Dr if you can see a ddietician for advice for a low potassium diet so this is have boiled potatoes but don't use any veg water for gravy etc, no chocolate, no crisps, chips, wedges, hash brows anything like that, not too much milk or yogurt if you have a yogurt have lest milk its a 1/4 cup of milk or a yougurt a day. You can have haribo though every cloud and all that. I would research high posassium foods as there are loads more its a really unhealthy diet but it shoudl help lower your posassium then you can ask for a repeat blood test and see if it helps you need to be strict and follow it to the letter it is important. Now your vitamin D you may need a higher dose so ask for a review, vit D effects calcium levels and such so if that is not right I know you can feel like crap, the easiest way I can descibe how I feel when mine goes on one is perminat flu symptoms but without the cold, all my bones and muscles ache its horrible. If we can get your iron, potassium and Vit D sorted you will feel a lot better that I can promise. Your kidneys controls all these things believe it or not so if they are off kilt then you feel pants good news is that you can be made to feel better, I would ask for a referral to a renal clinic though as they underrstand the bloods more than a GP and will moniter you better. Keep me posted x
Hi Helen
Thanks so much for all your help. I do feel like i've been hit by a truck most days, all the aches & pains are awful & the fatigue is unbelievable. I will talk to my dr & see about a referral as I would just love a day sometime soon when I can do things that I just can't do at the moment.
I do exercises for my back every morning & walk my dog twice a day so I do a fair bit of excercise. Unfortunately I love chocolate crisps, bananas, yoghurt & take my drinks milky so I will have to sort my diet out, also my bp. I did have an incident last year where my hyperparathroid went over but it went back to normal on the next bt the dr took. Is this part of the same connection with the kidneys, I had a feeling it might be. I have also stopped taking ibuprofen which is really hard as this is one thing that helps with the fibromyalgia.
Thanks again for your help Helen, hope you are well at the moment.
Fran
Hi,
Banannas are the worst thing for you lol stop it. It is a really awful and unhealthy diet to follow but it will help you I promise, its hard to do at first but you will get used to eat. My work colleagues used to say to me that is a cream egg, yes it is, but you are not allowed cholcolate, are you going to take it off me, err no haha. What about getting some co codamol from boots and taking one paracetamol and one co codamol if paracetamol don't help. Someone crashed into me and I was advised to do this and it has just a bit more umph its all trial and error and seeing what works for you that wont reduce your GFR. Some antibiotics can reduce GFR so just be mindful of this if you ever need to take them always question never be affraid to do this you have a right to clarify. Yes my hyperthyroid is massive and it is due to CKD and low vit D levels another perk of the illness. If you walk your dogs a couple of times a day its sounds like you are doing what you can cope with at the moment. If you get cramp have a big drink of water a found when I was rudely awoken in the middle of the night after hopping round the bedroon loke a loon a big glass of water helped. I know this will make you wee more but at least you wont be in pain. I remember the weeing in the night stage up and down through the night, I hardly wee anymore now I have started dialysis and some people don't wee at all, that would be weird. I am ok at the moment had a high phosphate moment but back on the binders so not like the rhino who have cake crumbs in her skin at the moment. We have our pre op tomorrow for our transplant next week I have a hell of a best friend let me tell you so hopefully all will be well. Like I said do keep me posted how you get on and it will get better x
Thanks again Helen. I will be careful with the diet. The big drink of water for muscle cramps is good, I will do that when I get any spasms. Good luck tomorrow with your pre ops & for next week. Keep in touch.
Fran x
Hi Willowby,
Sorry to hear you are experiencing so many symptoms. It seems highly unusual to me that you are exhibiting so many symptoms while your GFR is 56 - that's a decent number - personally, I did not get all those until my GFR was way down in the low 20's and teens. In fact, I believe my experience is the more "common" one - I wonder if others on this board could comment?
Regardless, a few things:
-GFR is not a perfect measurement, and the number fluctuates, so a variation of 6 in GFR may in fact not mean much. In other words, it might possibly be a standard deviation.
-Those of us with kidney disease generally follow the same advice: limit protein and sodium, avoid junk foods, keep as fit as (reasonably) possible, and try to keep your blood pressure under control. Your nephrologist may prescribe a blood pressure medication if necessary.
Apart from that, I'm not aware of any other treatments while your GFR is 56. Again, perhaps others could chime in?
HI Mikewordman
I agree from what I've learnt on here that my symptoms are early (that is if they are to do with CKD) it could be something else. It just fits almost completely with CKD especially the Vit D & Anemia. I did think that it maybe Hyperparathyroidism as my parathyroid was out when I was tested recently. I have already looked at reducing my protein, sodium & I don't eat junk foods very often. I also keep quite fit with having a dog to walk plus I do excercizes every morning. I am really worried about my blood pressure & hope the new diet may help that because I would be really worried about taking statins I'm on quite alot of medicine already.
Thanks very much for the reply I'm very grateful for your advice.
Hi Willowby,
Your BP does seem rather high. My CKD consultant advised me to keep my PB controlled to not more than 130/80. CKD and BP are highly related though the causal direction of the relationship is not yet decided. It is also important to keep anaemia- free. if the only symptom you had was a slightly lower GFR, you would not need very regular blood checks,however as you have a range of symptoms it would be wise to ask for further investigation.
Hi Lyn
Thanks for the reply. I'm trying really hard to sort out my bp as my mother died at 53 from heart failure, so all the family worries about that. I will ask the dr to send me to see someone and try and sort it out. I will do everything I can do to help myself with diet etc., and see if I can make my bp better.
I hope you are doing ok.
Fran
Hi Fran,
I have had CKD for quite a few years. It was originally caused by a kidney stone that they could not get out and my kidneys were damaged as a result. My GFR is 22 but apart from having to watch my BP and take iron, folic acid and Vitamin B12 injections to keep anaemia free, I am reasonably OK. I do get tired easily and have to be careful when I get a cold as my immune system is not very good and infections can get out of control quickly. But I'm in my 70s now so go carefully. Best of luck to you.
Probably the best advice among this blog to Willowby! I am a soon to be 73 yr. old female who has lived her life with one kidney. I have always watch my protein intake. Recently, I have been paying more attention to my sodium intake, too. Do you watch potassium as well?? It is a balancing act for sure!! In addition to watching their GFR people have to watch tests results of creatinine and BUN. Let me know about your potassium and what foods you really watch. . .I know bananas are a big NO NO!
Yes - these symptoms only occurred for me when GFR was in the teens and low twenties. In the teens, they came in with a vengance and still have them on dialysis.
Hi Kath
Thanks for your reply. I love bananas & thought I was being really healthy as I had 2 Bananas, Raspberrries, Blueberries & a yoghurt for breakfast. It now looks like I need to cut that out. My Potassium is 5.2 which I didn't realise was bad. I know I use too much salt so will cut that down. My creatine was 84 on last bt. I am 63 so I am creeping up there a bit, even though my brain doesn't seen to know that. I went out and bought cereal today so will start the lowering potassium tommorrow.
Hope you are feeling ok. Thanks again.
Fran