Low egrf, high creotine, everything else no... - Kidney Disease

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Low egrf, high creotine, everything else normal.

tresa56 profile image
20 Replies

This is new to me and still pretty scary. I am 41. Last November my gfr was 51.. Then in January it tested at 61. Last week it tested at 48. Is it normal for it jump around so much.. My creatine is high.. Like 1.4. It has jumped around a little.. All my other blood tests and urine tests came back normal. No protien or anything in urine. Seeing the kidney doctor for the first time this week.. Not sure why no doctor said anything to me before it got this bad.. I'm 41..I also have hashimotos and rheumatoid arthritis. both apeared this year... No idea if it's connected.. My tsh has not been exactly stable this year either..that seems pretty low though. Since I started taking thyroid medicine my blood pressure went up..So now I am on Losartan..but historically it was always low to normal.

I am also really confused about what I should be eating. I am trying to cut out as much salt as possible. I am mostly vegetarian anyway.. I usually eat salmon or shrimp like once a week. I occasionaly ate bacon but i stopped because it is high in salt and processed..I stopped going out for ice cream...I am pretty much scared of food at this point lol..

I used to drink more often when i was younger...now on occasion I will have a few drinks..Former smoker....When I was drinking and smoking and eating whatever I liked I passed my blood tests =)

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20 Replies
WildIris profile image
WildIris

First of all, do you know what's wrong with your kidneys? In my case, by exclusion, it seemed to be high blood pressure for a decade, and taking too much tylenol. I have lupus, which is similar in some ways to arthritis though I take low dose (2.5 mg) prednisone for it which may affect labs. I also take thyroid, which doesn't. My eGFR bounces around a lot too, can't figure out why, but mostly in the 50's. No proteinuria, that's an excellent sign and you are more likely to be able to preserve your kidney function. I doubt that occasional fish in your diet matters much to your kidneys. I assume you've read about what to avoid for your kidneys, also drinking plenty of water, also exercise to keep up your general health. Listen to the dr, or course, but their point of view is different, eg diagnosis, transplants and dialysis since there isn't much they can do medically between diagnosis and dialysis. So also listen to other kidney patients who are dealing with the disease day to day. Best wishes to you! Life does go on, and you will surely get more relaxed about CKD.

tresa56 profile image
tresa56 in reply toWildIris

No idea whats wrong with them...I looked up old blood tests and it seems in my 30s my egfr was 75 which isnt terrible but a bit low for in your 30s...No one ever mentioned it to me and I thought nothing of it because it showed up as in range on my blood tests...I have taken nsaids...for headaches, bachaches, period cramps. from time to time..nothing excessively.. I hope i get more relaxed it seems scary at the moment..My appointment is this Thursday..At this stage should I be avoiding potatos? My numbers for potasium were fine? But I dont wan to cause more damage and i do tend to eat alot of baked potatos..I have been avoiding them this week. I hope kidney function can be preserved..I also saw that there was medicine you can take in the early stages to control it..Not sure if i qualify for it since i dont have diabeties..I am not obese but i have put on a few pounds I am having a awful time loosing since hashimotos kicked in..I should start exercising more...Until recently I was too fatiqued because my thyroid medicine was no close to correct and apparently I can not take levo..

WildIris profile image
WildIris in reply totresa56

I like potatoes too and never stopped eating them. My potassium and phosphorous numbers tend to be borderline high. But I recently found out that cutting and soaking potatoes in water for half an hour before cooking significantly reduces potassium and phosphorous content. So I've been doing that when I put them in soup (doesn't affect the taste). I guess with a baked potato, soaking a smallish one whole might work, or slicing one longwise then wrapping it in foil would be good. You could soak several potatoes then drain the water off, and they'd be ready to go if you microwave them. Google it.

tresa56 profile image
tresa56 in reply toWildIris

Thank you..I am going to try that.

userotc profile image
userotc

You could/will get tips about helping your kidneys on here including from me based on my mum's doubling of her eGFR via nutrition and lifestyle. That would be wrong because:

1. Healthcare (allopathic or natural) should be personalised.

2. You've indicated other health issues besides CKD eg hashimotos.

So the best advice is seek a qualified Nutritional Therapist. Good luck.

tresa56 profile image
tresa56 in reply touserotc

I'm going to ask the kidney doctor if they can recommend one.. I'm not seeing much on Google in my area.

userotc profile image
userotc in reply totresa56

Options below (I recommend CNHC for 1st). Kidney doctor may see as competition.

practitioner-search.bant.or...

theanp.co.uk/member-directory/

nonna70 profile image
nonna70

Most of us were scared at first. Three good sites are kidney.org, kidneyfund.org and kidney school. Don't give up baked potatoes-perhaps eat less. God bless.

Bassetmommer profile image
BassetmommerNKF Ambassador

Wow, there is a lot of misinformation out there; it is confusing. The good news is that you caught the CKD and now you can help yourself slow the progression. And yes GFR numbers commonly bounce.

Tylenol is safe for CKD. It affects the liver, not the kidneys if you use too much. But you really have to take a lot. Do not take ibuprofen at all.

RA and your thyroid issues are all connected to your CKD. Once you get those in control, it will help to stabilize your CKD numbers. Thyroid is especially difficult to get steady so give it time. Make sure your rheumatologist and other doctors all are on the same page. Medications should be approved by the Nephrologist once you see them.

Your diet is in the right place. It is best to get into the habit of keeping away from high potassium foods. No red meat is best. Low salt, obviously, no processed foods and limit any foods with additives. In other words, whole foods, fresh and home made is best. Drink water and ask your doctor what they recommend, but it is usually 60-72 ounces daily. See if you can see a RENAL dietician.

The good news is that once things get a bit more in control, you can slow the progression of the CKD. Totally doable. You can sort through this site and see tons of people like me who were able to slow the progression down. I was told in early 2018 I would be on dialysis in 6 months. I am still not on dialysis. I was at stage 4 back then.

Ask question here, we love to support folks.

tresa56 profile image
tresa56 in reply toBassetmommer

Thankyou...I think my thyroid is almost under control...I have only gotten one good test and we have to keep adjusting..Its bouncing around as well...I will know at the end of the month..I think the Ra is fine...The medicine they gave me makes it so it usually is not even noticable so I am assuming its fine anyway...Its just super scary...You never learn about kidneys =) And looking back at old blood tests i was around egfr 75 for 10 years or so and no one mentioned it and i thought nothing of it because it was in the green on the blood test. I would have immediatly stopped nsaids...ect...but it is what it is I guess.

Partner20 profile image
Partner20

Unstable thyroid levels, in particular tsh, can have an impact on kidney function. My partner's tsh recently jumped to more than 100 as a result of not taking levo for about four weeks. This was done with the knowledge of his GP who fortunately monitored him regularly, and when he returned deranged kidney function test results she contacted the hospital and my partner was instructed to attend immediately for an ambulatory A&E appointment. After hours of tests, scans and an IV drip, he was finally allowed home with strict instructions to resume taking levo and to get his tsh down to around 1. Further appointments were made to monitor kidney function and his high creatinine level, after which he was discharged back to the care of his GP because although his egfr was still low and his creatinine high, other kidney function tests were within range so they said there was little they could do. Left on his own with no possibility of further NHS kidney help, he went on to do his own research, coming up with some alternative treatments which have worked amazingly well for him. So, one of the most important things for you to do is to make sure your thyroid levels are optimal..

tresa56 profile image
tresa56 in reply toPartner20

Definitely trying to get my thyroid optimal. Did his egfr get better? What did he do.. That's what mine is to.. High creatine low egfr.. Every other blood test and pee test I past.

Partner20 profile image
Partner20 in reply totresa56

Sounds a bit like my partner. Yes, his egfr improved, although it took several months before his thyroid levels became optimal once more. However, in the meantime, after the rather scary hospital episode, he had been researching kidney function and what affects it. He came across an American site which seemed to give proven results, and after more research into their recommendations signed up and began to take the required herbal supplements. He is a practical, logical man who would not embark on such a programme lightly, but did his research, weeks and months of it, as the NHS had nothing to offer. To his surprise his egfr greatly improved, and is now a normal level for his age. Better than mine, in fact!! No doubt many would dismiss this, but it is the only thing that has helped him. Because it is not a recommended path to take on a medical forum like this, I don't post about it. He has other issues which make it difficult to follow all dietary requirements for each issue, but his egfr remains within normal range now and is stable. His creatinine is always high, but that may be his normal, as most of us have no baselines for any test. However, it rarely goes above range now, which is a relief. Hope you manage your thyroid levels successfully, being hypothyroid myself too I know it is not always easy!

Futureckd profile image
Futureckd

hi Teresa56. From my own experience , my creatinine level was jumping up and down every 2 weeks when I did the blood test. It was crazy. As a result the egfr , which is a mathematical equation function of creatinine and other factors like age and gender, was jumping also. At that time I was eating eggs, cheese , some meat/shrimp/chicken but not much from the meat in general. Then I read the book of Lee Hull about diet that was mainly plant based low protein and followed as much I was able to but for sure I became Vegan at very low protein diet. Then creatinine was stabilized for almost a year. After that my tsh got high at 21 and doctor changed the levo dose, creatinine started to jump. The doctor wants it to be around 1-1.5. I did not do new blood test yet as it takes time to stabilize tsh level in blood. I hope my experience helps. I believe the low protein plant based diet can help. But most important that you talk to your doctor and renal dietitian.

MinnadeParis profile image
MinnadeParis in reply toFutureckd

Hi, re the book by Lee Hull. I would like to buy it but I have IBS and cannot do dairy and min gluten. Does the book have a lot of recipes with dairy?

Thx

Futureckd profile image
Futureckd in reply toMinnadeParis

the diet is low protein plant based. Dairy products are animal based. The plant based is mainly vegetables and fruits.

MinnadeParis profile image
MinnadeParis in reply toFutureckd

thank you for clarifying. I’ll buy the book

Blackknight1989 profile image
Blackknight1989

Good Gosh I wish I was Lee Hull the worship is just amazing! He’s the only one who’s ever had success improving his kidney function by following the guidelines listed in detail here:

google.com/search?q=hypeeth...

Blackknight1989 profile image
Blackknight1989

Sorry but sometimes it gets old but that’s probably just me. No offense meant Futureckd it’s my problem not yours…again my apologies if offended!

Blackknight1989 profile image
Blackknight1989

All hail Mr. Hull!

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