1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  3. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2019 »
    Dismiss Notice
  4. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

CKD and water retention

Discussion in 'Diabetes Complications' started by Sharnanike, Mar 14, 2019.

  1. Sharnanike

    Sharnanike Type 1 · Member

    Messages:
    15
    Likes Received:
    5
    Trophy Points:
    23
    Hi
    I’m type 1 diabetic and have CKD stage 1. My kidney function when last checked was absolutely fine - having fasting bloods next week. I’ve recently been getting water retention that’s so bad! Doctors think that it’s due to my kidneys. My whole lower half of my body doubles in size, clothes being too small, can’t wear boots because they don’t do up. The doctor says exercise helps but it actually makes my legs blow up more.
    I’ve read that lemon water can help with excess fluid. Does anyone know anything else that can help with the CKD and water retention?
    Wondering if anyone has experienced this too, it would be good to hear from people who have.
     
    • Like Like x 1
    • Hug Hug x 1
  2. Pipp

    Pipp Type 2 · Moderator
    Staff Member

    Messages:
    6,880
    Likes Received:
    10,720
    Trophy Points:
    198
    That must be so uncomfortable, @Sharnanike .
    I'm afraid I don't have an answer, but bumping your post in the hope someone else will.
     
  3. Sharnanike

    Sharnanike Type 1 · Member

    Messages:
    15
    Likes Received:
    5
    Trophy Points:
    23
    Thank you!! It really is, I can’t even wear socks without a massive imprint. They say exercise but I can’t when they’re fully blown up. I’m 8st 8 and go up to 8st 12 at times with just water I think!
     
  4. Winnie53

    Winnie53 Type 2 · Well-Known Member

    Messages:
    1,761
    Likes Received:
    1,850
    Trophy Points:
    178
    15 or so years ago my feet and ankles began swelling. It tended to be worse in the summer. 4 years ago, I came across some info that vitamin B5 or B6, can't remember which, helps with this problem. I tried it and it worked. Today, I just take a good quality, well balanced B-Complex. I rarely experience swelling now.

    Might be worth a try. Probably would be best to ask your doctor if starting a B-Complex is okay before doing so.

    Curious as to what type of meals, snacks, and beverages you typically consume. Do you add salt, spices, or herbs to your foods? Are you taking any medications, prescribed or over the counter, or nutritional supplements that could cause this problem?

    Glad you're going to get a lot of lab work done soon.

    Elevating my feet helped too.

    I hope you get answers soon.
     
    • Like Like x 1
  5. Sharnanike

    Sharnanike Type 1 · Member

    Messages:
    15
    Likes Received:
    5
    Trophy Points:
    23
    Thank you for that! I’ll definitely be asking the doctor about the vitamins when I go in to talk about my blood results!
    I currently don’t take any other medication than just insulin. I may be put on statins and thyroid medication soon though.
    I don’t eat much salt.. only on my chips but they’re homemade and rare that we have chips. I mainly make homely foods - stew, chilli, meat and veg etc. We eat quite well I’d say.
    The swelling goes down after a night of sleep but not fully and then the next day they blow up again. I am quite active too. When I work nights they blow up loads!
     
  6. Winnie53

    Winnie53 Type 2 · Well-Known Member

    Messages:
    1,761
    Likes Received:
    1,850
    Trophy Points:
    178
    Yes, I experienced the same. Swelling improved overnight, then began again the next day. Going to look around some more today to figure out if it's 500 mg of B5 or B6 that I took for my swelling.

    Just did another search, this time on "thyroid edema". Fascinating. I just learned something very important. Might be relevant to you too. It's an article on Wilson Temperature Syndrome. I had no idea that another cause for leg swelling is low body temperature. Curious if this might be a possible explanation for your swelling. According to the article, this condition wasn't described until 1990...

    https://www.wilsonssyndrome.com/thyroid-and-fluid-retention/

    Denis Wilson, MD developed the concept of Wilson 's Temperature Syndrome in 1988 after observing people with symptoms of low thyroid and low body temperature, yet who had normal blood tests. He found that by normalizing their temperatures with T3 (without T4) their symptoms often remained improved even after the treatment was discontinued.

    I don't believe I have this condition because I have a condition called subclinical hyperthyriod, not hypothyroid, but interesting all the same. Although, I should add that I've always ran a subnormal temperature of 97.5. Interesting...
     
  7. Sharnanike

    Sharnanike Type 1 · Member

    Messages:
    15
    Likes Received:
    5
    Trophy Points:
    23
    Oh wow! Thank you for that, I’ll have a read of that tonight during work! It may be helpful to mention that to the doctors too.. I’m going to be having a full service and mot there I think haha!
    Let me know about the vitamins once you find out if that’s ok please. Thank you for your help.
     
  8. Winnie53

    Winnie53 Type 2 · Well-Known Member

    Messages:
    1,761
    Likes Received:
    1,850
    Trophy Points:
    178
    Still looking. It's in one of my books, and I have a lot of books...
     
    • Like Like x 1
  9. Winnie53

    Winnie53 Type 2 · Well-Known Member

    Messages:
    1,761
    Likes Received:
    1,850
    Trophy Points:
    178
    @Sharnanike after a third search, I finally found the information that helped me 3 or 4 years ago with my decade or more of foot and ankle swelling...

    It's from Jeffrey S. Bland's book Disease Delusion (2014) pages 115-118 of the paperback edition:

    "Back in 1990 when I and my close friends and medical colleagues David Jones, Leo Galland, Sidney Baker, Joseph Pizzorno, Graham Reedy, and Alexander J. Bralley were first talking about the clinical applications of functional medicine, we all agreed that addressing an imbalance in the assimilation-elimination process would be among the most important.* At my suggestion, we even developed an acronym for the functional medicine approach that we call gastrointestinal restoration. We named it the 4 R Program, and over the subsequent decades, it has been tested, refined, and taught to more than a hundred thousand health practitioners around the world.

    The 4 R's stand for:

    Remove
    Replace
    Reinoculate
    Repair

    Here's How it works..."

    [skipping steps 1-3]

    "...Step Four Repair
    Take a supplement of the nutrients that can support the healing of the intestinal mucosal barrier. The most important of these are zinc (15 milligrams), pantothenic acid (vitamin B5, 500 milligrams), omega-3 fish oils (2 to 3 grams), and the amino acids L-glutamine (5 grams) and magnesium (200 milligrams), along with a B-complex supplement."


    To learn more about the 4 R's, go here... https://jeffreybland.com/chronic-illness-what-works-part-one-the-four-r-program/

    It worked for me but I eliminated the L-glutamine because I'd taken it previously and experienced no benefit; I already ate most of the foods rich in this nutrient; and this supplement can be harmful: "People with kidney disease, liver disease or Reye's syndrome, a severe condition that can cause swelling of the liver and brain, should avoid taking L-glutamine supplements." - https://www.medicalnewstoday.com/articles/320850.php

    I stopped taking the pantothenic acid (vitamin B5) after 6 months. I'm rarely bothered by feet and ankle swelling now, perhaps due to the B-complex. Don't know. That said, I still take all of the other listed supplements, some all the time, others off and on for other health benefits. The 500 mg. B5 I took was synthetic, and it worked fine.

    A word of caution about the B-complex. Folic acid (synthetic) is the cheap form of folate (natural). I learned recently from Dr. Ben Lynch, ND, that folic acid doesn't work as well as folate. Additionally, folic acid tends to cause problems with how folate is transported and taken into the cells. I personally take a natural B-complex made from organic, whole foods that uses folate. Not sure if it's available outside of the US, but I believe the brand, Garden of Life, sells two similar B-complex's, one organic, the other not, that probably are available in other countries. Also, avoid B-complex's referred to as B-50 or B-100. Find a B-complex that is balanced, preferably from a company that has an excellent reputation and track record. Don't buy cheap supplements. Too often they don't contain what's listed on the label, or they have far more or far less of the labeled nutrients. Worse yet, sometimes they have unwanted contaminates.

    If you learn through further testing that your kidney function has worsened, a book I'm reading right now may be of interest. It's titled Stopping Kidney Disease (2019) by Lee Hull. This is an abbreviated version of his story: "I was diagnosed with an incurable kidney disease (FSGS) in 1998 after four years of symptoms. 2019 marks my 25th year living with kidney disease. What I found was education for kidney patients is almost non existent in the U.S. I had to figure everything out for myself after traditional treatments failed or I was going to to die young. After ten years of battle, I was finally able to put my disease in remission. I have been in remission for a little over eleven years at this point. The research and treatment plan in “Stopping Kidney Disease” is based on my own treatment plan and philosophy. My goal is to educate patients on ways to slow or stop the progression of their diseases like I did."

    I don't know if any of this will help, but I'd love to hear an update on how you're doing, here or privately, anytime. I've spent 4 years now studying health. I think the most important changes I've made has been eliminating omega-6 rich, industrial seed oils - (soybean, saffola, sunflower, corn, cottonseed, canola, and peanut) - from my diet; and greatly reducing whole food starches and sugars from my diet. I eat mostly organic, whole foods today. Additionally, when I'm on my best behavior, I walk throughout the week. Sometime twice a day, other times 4 times a week. Wishing for you improved health. :)
     
    • Like Like x 2
    • Winner Winner x 1
    #9 Winnie53, Mar 28, 2019 at 11:14 PM
    Last edited: Mar 28, 2019
  10. Winnie53

    Winnie53 Type 2 · Well-Known Member

    Messages:
    1,761
    Likes Received:
    1,850
    Trophy Points:
    178
    Oops I forgot to include this video. After wading through a lot of videos - (most are questionable or outright scams) - I finally found one by a nephrologist that actually was quite good, brief and to the point...



    It's not possible to reverse kidney damage. Loss of some kidney function is normal as we age. When the doctor refers to "improving kidney function" in the video, he's referring to stopping or slowing the progression of the disease.

    I have two friends who have Chronic Kidney Disease, one stage 3 due to NSAID use, the other stage 4 due to being treated with insulin for her type 2 diabetes for 20+ years - (she regularly had A1c's that were in the 7's and 8's which too many endocrinologists in the US think is okay.). For those who live with pain, try to find ways to address or manage the pain without using NSAIDs. Talk to your doctor. If that fails, do you're own research.

    Interestingly, the doctor did not mention diet. The book I'm reading right now provides information on what to eat and what not to eat with CKD. It's encouraging. Diagnosed in 1998, after years of trial and error, and digging into the research, which he overviews throughout the book, he has stopped further progression of the disease.
     
    #10 Winnie53, Mar 29, 2019 at 12:05 AM
    Last edited: Mar 29, 2019
  11. Simon84

    Simon84 Type 1 · Well-Known Member

    Messages:
    326
    Likes Received:
    539
    Trophy Points:
    153
    I'm struggling with this too and struggle to get my trainers to fit sometimes and if I press on my ankle I can leave a massive dent in it that takes a while to disappear,doctors are being useless at the moment TBH although all my platelets in my FBC are through the floor and one doctor is considering testing me for LUPUS as that can cause this symptom as well as the low platelet count and many other symptoms that have plagued me since last year...Hope you get some answers soon.
     
    • Hug Hug x 1
  12. Winnie53

    Winnie53 Type 2 · Well-Known Member

    Messages:
    1,761
    Likes Received:
    1,850
    Trophy Points:
    178
    After thinking about this more, I just want to add that it's important to see your doctor if you're experiencing edema, which is what Sharnanike did.

    When I began experiencing foot and ankle swelling, perhaps in 2005, not sure of the year, all my tests regarding kidney function were fine, and still are. That said, for those who unknowingly have chronic kidney disease that is progressing, edema is one of the symptoms, so it's important to talk to your doctor.

    If, as in my case, the doctor can't provide an explanation for the foot and ankle swelling, trying the nutritional supplement strategy I posted above might reverse the problem, as it did for me.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook