I was diagnosed with ckd3 last year. Recent results showed my creatine level at 101! Is that abnormally high? How do I get it down? I don't feel like the doctors have given me enough information, and am worried I may end up on dialysis at some point. I'm only 41, so not particularly old. Anyone with any advice would be appreciated
Thank you x
Hi cstrutt, was that CKD3a or CKD3b,I'm in the same position doctors not saying nothing,but I'm seeing my GP Tuesday to try and get more information. I don't think they realise how we worry.
I'm not sure. I'm going back on Wed so will ask more information. I always feel I shouldn't keep them too long as they're busy so leave feeling confused and unsure what to do to help myself. I was also diagnosed with hypothyroidism. Both conditions make you feel tired, although I am on levothyroxine for my thyroid. Still, could be worse. Its nice to chat with people who are going through the same
I'm also on Levothyroxine. I also know the feeling that your keeping them to long,but I've learned to change my attitude,because I've had so much go wrong from being to trusting. Always remember it's your health at the end of the day,and you have every right to know what's happening.
Write your questions down,so you don't come out with the feeling you've missed something out.
In my case my hubby took two phone calls about haveing my bloods done again,and never asked WHY,so I've made an appointment for Tuesday,and I've got copies of all my blood tests they asked for (4) and I won't move until I have answers. Don't worry now just be prepared on Wednesday. Take care
Thanks. I'll write down some questions. I've had so many blood tests I've lost count. Wasn't sure whether kidney and thyroid conditions are related.
Thanks for the advice x
I've got a feeling there's a chance they may be connected,not sure. You take care
Your body your health.xx
If you are in the USA you might go to the davita.com website and look for a Kidney Smart class in your area. It's free and it will answer a lot of your questions and provide you with a wealth of information to calm your concerns. If you are elsewhere there might be a similar program where you live and the doctor may be able to help you find it.
Thanks.... I'm in the UK but will see if similar classes are run here
try the online kidney courses they should really help. They are at kidneyschool.org Blessings
If I can make a suggestion. You might want to set up a spreadsheet and post all of the lab tests the doctors run on you and the results. What I do is set it up with the Doctors name and the date at the top, and the name of the test on the left side. If the results are in the "normal range", I enter them in black, if they are high I put it in red, and if the test is below the range I put it in blue. You, of course, can pick any color but the purpose is to have the lows and highs stand out. I also highlight the entire line with my A1c and GFR scores.
Just a suggestion but it's a great way to see "at a glance" where your numbers are and see any trends developing. It's a good way to determine if your meal plan needs tweaking or if your meds are doing the job they are being taken for.
Great suggestion Mr K. I have a spreadsheet as well. It is very helpful. I like your idea of highlighting numbers that are off in a different color. I have columns at the top of my chart for each thing I'm interested in ( i.e. creatine, Potasium, GFR, Cholesterol, Sodium, Calcium etc). Next, I have a column that explains how that item affects my kidney as well as what normal range numbers are and what it means if the numbers are higher or lower than normal range. Since I have a cruddy memory, this helps so that each time I get new test results I have information at my fingertips of how it is affecting me so that I can discuss any questions with my doctor. Of course, from there I have dates of the exams and enter my test results under each column.
My only word of caution I have for everyone is that doctors use different labs and the labs have many technicians so there is a chance that the ranges may be subject to change from lab to lab and/or tech to tech.
Having said that the way I handle it is to ignore (meaning I don't panic) if the number is slightly above or below either end of the range. Not to be too anal about this but I color those numbers brown so I can see if the next lab continues that trend. If on the next lab my numbers go back within the normal range, I change it to black. That may be too much for many people to deal with but I found it makes me less anxious between testing and that just helps my blood pressure.
Same with me, always feel like I’m bothering the Dr if I ask questions, usually end up looking everything up myself, go for lab results on Monday,hoping for no changes.
Hi cstrutt, I just replied to a similar post by Mjm192 that she wrote about 10 hours ago.
I Googled CKD Stage 3 and got some good sites but can't find them again.
You could ask your GP to refer you to Dietician and a Nephrologist.
One of the websites said :
" how to reverse CKD3 . . . . "
then it listed things including:
Watching calories
Keeping Phosphorus intake low
Monitoring Potassium
Cholesterol
It said to eat a healthy balanced diet and, if overweight try to reduce calories and increase exercise. Keep an eye on any fluid retention.
That's all I can remember and I couldn't find the list again. I don't think this is a cure, but steps that can be taken to improve the condition. I have heard that seeing a Dietician would be beneficial but you may have you push for a referal. So keep pestering your GP!
About your Underactive Thyroid which you were only diagnosed with last year - do you know if you have Autoimmune Thyroiditis (Hashimoto's ). This is the cause of Hypothyroidism in most cases.
It is possible that, like many, you have had Hashimoto's Autoimmune Thyroiditis for a long time and it is caused or contributed to your health problems. Every cell in the body needs the hormone Thyroxine in order to function correctly. Without adequate levels of it, no organ or part of the body functions properly/well.
If you haven't yet had the following Nutrients levels tested - then please ask on Wednesday because you may have some deficiencies that need prescribed supplements.
Vitamin D, Calcium, B12, Folate and Ferritin.
Also ask for Thyroid Antibodies TPO and Tg (Thyroid Peroxidase and Thyroglobulin ) tests to confirm Hashimoto's Autoimmune Disease.
Ask your GP for a print out of your results. You can then Google each one or /and post on here and Thyroid forum so people can make informed comment. Post the date of tests, result and normal range in brackets and mention Levothyroxine dose.
I have a phrase for the health service - DIY NHS.
We have to push to get tested and diagnosed, then do our own follow up care. Knowledge is everything. Once we know what we have then we can research , find out as much as possible about our conditions, and do what we can to best 'accommodate' them and improve our quality of life.
My Cholesterol came down lower than it's ever been after I switched from a wheat cereal to eating porridge with added fine oat bran & semi-skimmed instead. I also have a banana every morning.
Remember - you have a right to ask for diagnosis and prognosis .
Also remember that you are Precious - we all are.
And you deserve to be well.
Thanks so much for the advice, really appreciated. I will push for more info on Wed when I see my GP. I've been looking up diets too as I've heard that's important in managing the condition
I hope you're staying well too
If you have thyroid issues, best to try and fix them naturally, not synthetically. Synthroid is a synthetic form of iodine. When you go on this or other meds like it, it basically stops your own thyroid from working, so eventually it will not work at all. and you will be reliant on this med for the rest of your life. You can choose to go the natural route, using kelp and selinium. Also check any scripts for side effects of causing thyroid issues. It takes a few months or more to get your thyroid back in check, but this is to me, a better option, and I'm using it now. Also, if your overweight,, lose about 20% of your weight, this will also help your thyroid to back to normal. If you are overweight, have high bp, sugar levels and thyroid, they are ALL connected and if you lose the 20%, eat more veggies and fruits, exercise regularly, this will all go back in check, and don't use artifical sweetners.. they wreck havoc on the body and are poison! If you need an alternative, use stevia. I use stevita stevia spoonful and have way before the stores ever started selling it. Heath food stores carry this.
If you have Hypothyroidism you need your replacement hormone (LT4 or T4 maybe T4 & T3) for LIFE. That IS the "natural" replacement for inadequate T4 !
It's either that or become very ill and eventually die.
Hashimoto's Autoimmune Thyroiditis is an incurable disease.
Thankfully the Hypothyroidism that it causes is treatable - with Thyroxine replacement medication.
Kelp should not be taken by anyone with a Thyroid problem. No one should take iodine unless tested and found deficient and being treated by a Consultant / doctor.
If you have a sweet tooth, as you seem to be saying you have - you can cure that within one to two weeks - just abstain.
Artificial sweeteners?? ! Stevita stevia? would never touch them.
Wrong! My T3, T4, TSH and PTH are all better. I have been taking liquid kelp, selenium and Michaels thyroid factors. Never went on synthetic replacement, as if you do, your natural thyroid ceases to work and that is why you have to take synthetics for the rest of your life. They burn your thyroid out! It took a year, my TSH has gone from 28 to now just 8. Normal range is 4. Know what your saying before telling people they will die without synthetics. And no, I never said weeks. Even if you take synthetis, it can take years to get levels in range, and also cause liver damage and or failure. What do you think synthroid is... It's synthetic iodine!
Hi Origionalbabe
I was drawn back to this thread yesterday when someone 'liked' my reply.
Now recall being a bit taken aback & concerned about your reply but didn't have time to reply back then , perhaps then forgot it ??
However, now that I've seen other replies of yours I am even more concerned and ask you to please think again.
TSH of 8 is far too high.
The TSH in a Hypothyroid patient needs to be brought down to the therapeutic level of under 2. This is to protect the Pituitary Gland from over working.
Also, I found this information on the Internet and thought you might be interested in checking it out:
" Potential side effects linked to stevia consumption include :
● Kidney damage
● Gastrointestinal symptoms
● Allergic reaction
● Hypoglycaemia or low blood sugar
● Endocrine disruption
Medical News Today 27 Oct 2017 "
I've not researched this further, as I can't spare the time and it's not something I would use anyway. Just thought you might like to look into it further.
Please speak with your Consultants. I don't know what your FreeT3 and FreeT4 levels are but with a TSH of 8 I am concerned that they are not good.
Your whole body - all of your organs need your Thyroid hormones.
If you are Hypothyroid then you need replacement - whether natural Thyroxine or Levothyroxine. You may need T3 if you are a poor converter. Are you under an Endocrinologist.
Do you have Hashimoto's Autoimmune Thyroiditis?
Have you had any Thyroid Antibodies tested ? Any other Antibodies tested?
Have you had the following Nutrients levels tested : Vitamin D, B12, Folate and Ferritin?
Have you ever had an Ultrasound scan of your Thyroid and Parathyroids?
Why have you had PTH tested - because of a growth on a one of the Parathyroids? Have you had Calcium and Phosphorus tested?
I am not asking these questions for you to reply to me. Just for you to consider.
If you would like experienced patients on Thyroid forum to comment then you could put a post on there.
I have sent you a pm before I saw all your replies.
Hope this helps.
Hi cstrutt
I’m 32 and I think I may have ckd3a or ckd3b. I just know that I have ckd and my kidneys function is at 70%, also I based it off of my gfr level and creatinine.
Unfortunately, Ckd is not reversible but we can slow the progress. Avoid foods that are not kidney friendly, try to maintain normal bp (in my case I was diagnosed with hypertension when I was 21), and try to be calm and live a normal life (not easy). Drink plenty of water too! Atleast a gallon a day.
I’ve consulted with another physician and he advised me to stay away from salty foods and drink plenty of water. So far my creatinine is at 1.1
I hope I can be of any help. Being in this situation is not easy (I know. I always overthink!) but we need to embrace it and take things one step at a time.
Drink plenty of water. Eat healthy foods. Pee if you have to pee. Let me know if you need someone to talk to. This forum helped me overcome my concerns and issues. Lots of great people in here.
xoxo
Thanks so much for the advice. One thing I was always guilty of was not drinking water. I'm now really conscious to drink as much of it as I can. Then I read be careful how much fluids you have. Sort of ignored that though. It's just good to know there's loads of others out there feeling the same way.
Thanks again x
You’re welcome. I take it with fish oil and cranactine (1 month) makes you pee more. Try to put a glass of water next to your bed as a reminder that you need to drink it as soon as you wake up in the morning. I drink at least a gallon.
If your sodium level is low you should not cut out salt. Also best to use Himalayan pink Sea salt, not processed table. Get it checked. Mine stays on the low end of the range and usually is too low. I drink a lot of water. My creatinine is 1.9, I've had kidney failure for ever. Born with kidney disease, kidney failure was found back in 1986 when I was pregnant. Creatinine was 2.3 back then. Had a transplant 15 years ago.
Hello cstrutt, re your next visit to your doctor, I definitely agree with the advice you were given to write down all your questions - and leave room to quickly write the replies down, so you don't get muddled, there is so much information to take in!
Regarding diet, water intake and any supplements, I think its best to go by your own doctor's advice as everyone on here seems to have a different kidney problem or different dietary needs. I assume you will be sent to see a kidney specialist, though if you are in the UK it could be quite a while before this happens. If you have been told you are at stage3a or3b (my doctors do not make this distinction - just say stage 3 CKD), its considered as being in the moderate range, so try not to worry too much. Have a look at sites such as Davita.com, which is particularly useful for USA residents but has much general information - also the NHS Choices website, which gives general information applicable to the UK, and connects with other useful websites here. Hope this helps a bit - Curleytop1.
Hi you are so right I have just been told I have chronic kidney disease stage 3
I don't know anything about the two different parts of it meaning the stage 3a or the stage 3b if any one does and could tell me that would be great and like cstrutt says my doctor have given me no information or advice on it at all only that his sending me to renal doctors at hospital but nothing else
Also this only got found out with blood results and with my first result I was told that they would just monitor it and two tests and 8 weeks later i was told I had chronic kidney disease stage 3 that's all I was told nothing else
If anyone can tell me how it went from monitoring it to stage 3 within 8 weeks I be grateful also any information I know that it goes up to stage 5 and I am worried that in 8 weeks it got to stage 3 so how fast can it take to go from 3 to 5 another doctor in a comment
Said don't worry about it but I am
When we are told we have this I think doctors should explain wall and give us information about it
Not sure what the range is for where your getting your labs. Get a copy, it should have the range on the other side of the page. This way you can see where you are compared to "normal" ranges. In the US, you are elligable for a transplant when your createnine reaches 6. I waited until my createnine was 12.6 before I gave in and went on dialysis. Had a transplant about 4.5 years later (2003). If your not real tired, smelling poison, having high bp due to swelling, and still thinking clearly, I'd wait until you FEEL you need to go on dialysis. Also, everything you take drug wise, that is a pharmacutical will go through the liver and kidneys and this will lower your kidney function. This is the point where I learned about alternative meds, which do not harm kidneys (herbs, vitamins, minerals). I started with Michaels Kidney Factors, which did help my kidney function improve (3 a day I think it was), and still take one a day now.
I have stage 3, found out 4 months back on 6 monthly check. I was advised to cut all non veg
Stop milk ,.eggs. Recent lab shows reduced creatinine. Pl also check Ur na, p, k based foods. If ur diabetic pl check hba1c, I had poor control! . Keep your bp in check. Worrying won't help it will stress you. Do yoga deep breathing in Hale exhale slowly, key to yoga is slow and consiously doing it don't treat it like an exercise, meditate it will give that sense of well being. Be happy . Thanks n regards
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