I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on September 14, 2015, 07:31:18 AM
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Hi Everyone,
I know that we have to avoid many things when in CKD but I'm just wondering whether this disease actually produces any vitamin or nutrient deficiency and, therefore, whether supplementation may be beneficial? I found this article on the subject on Davita.
http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/the-abcs-of-vitamins-for-kidney-patients/e/5311
My Neph has only ever mentioned avoiding Vit A before but nothing else about this subject so am just wondering what other people's experience has been with regards to this.
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My Davita unit prescribed me a vitamin called Dialyvite 3000. My insurance wont cover it but the price wasn't to bad.
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Athena,
As a pre-dialysis person, your vitamin needs are certainly not the same as one on dialysis (where many micronutrients are dialyzed out).
The water-soluble vitamins may stay longer in your system than a person with normal kidney function.
So avoid mega-dosing.
My personal experience is with B6.
It may have contributed to the early development (pre-dialysis) of my peripheral neuropathy.
And I am not diabetic.
From the Linus Pauling Institute:
Toxicity
Because adverse effects have only been documented from vitamin B6 supplements and never from food sources, safety concerning only the supplemental form of vitamin B6 (pyridoxine) is discussed. Although vitamin B6 is a water-soluble vitamin and is excreted in the urine, long-term supplementation with very high doses of pyridoxine may result in painful neurological symptoms known as sensory neuropathy. Symptoms include pain and numbness of the extremities and in severe cases, difficulty walking. Sensory neuropathy typically develops at doses of pyridoxine in excess of 1,000 mg per day. However, there have been a few case reports of individuals who developed sensory neuropathies at doses of less than 500 mg daily over a period of months. Yet, none of the studies in which an objective neurological examination was performed reported evidence of sensory nerve damage at intakes below 200 mg pyridoxine daily (90). To prevent sensory neuropathy in virtually all individuals, the Food and Nutrition Board of the Institute of Medicine set the tolerable upper intake level (UL) for pyridoxine at 100 mg/day for adults
http://lpi.oregonstate.edu/mic/vitamins/vitamin-B6
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Zach, thanks a lot for your detailed reply. Wow, Vit B6 caused your peripheral neuropathy? I thought it was supposed to be good for that condition or good for the nervous system in general? I'm sorry to hear this. I hope the PN isn't too bad. Why did you take high doses of B6 in the past?
Mega-doses of any vitamin or mineral is very dangerous and the complementary health industry really push megadoses as a favourite marketing tool towards creating better health. There is a pharmacy-stocked vitamin and mineral pill specifically designed for CKD patients. It's rather expensive but from my glance at the quantities of each nutrient, they were pretty low safe doses. They had B group vitamins, Coenzyme Q10 and selenium from memory.
Apart from that, I would think taking Fish Oil might be fairly safe for us & even recommended?
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I try to learn what I can about limiting vitamins and supplements…the US has an odd arrangement where the FDA wants full control, but since we really DO NOT know how much is in any pill or dose, it seems confusing, and possibly unsafe. and has proven unsafe in some instances ( like the diet herbs)
There is a Consumer's Report type site that tests several hundred OTC products…you can pay to see if the one you are taking is covered, and or chose one brand tested and found accurate.
Take Melatonin, very cheap, yet the pricey ones may have less of an accurate stated dose than the ones in a cheap grocery. Because there are no rigid FDA rules over them we truly have no idea..so in many cases a quality product may come from a quality company…or not.
I've read some doses are far under what is stated on the bottle, or massively over ( I recall a Vit D example where 2,000 mg was actually 50Kmg a pill!!! mislabeled or something.so a danger to the patients.
Recent studies ( heard it last week) are showing no useful health from taking most/any of them. this could be true, or another crush effort by the FDA/powers that be in controlling this market.
I take very limited amounts of : Tumeric, Vit D3, Ubiquinol, and ALA ( or blood sugar control) I got slightly anemic so iron was added by my doc.
My Meds are Lisinopril, and Lasix, which raises BS, but my HA1c is no where near pre diabetic, so the morning high fasting number (>120) is supposedly not a worry but Lasix ties you to the bathroom the first several hours!! I hate that.
My BP med Lisinopril is a marvel at helping me keep 118/60 for BP. My last Neph changed it to a calcium channel blocker without telling me why, because I had ONE high reading of Potassium/Phosphorous…so they jerked me off before ASKING me about my diet.!!!! TYPICAL..as they don't believe in diet as helpful.
It was my diet I am certain that was too high, but making a few changes in foods I hope to prove in my next test NOT to keep me from an ideal med for kidneys. ( Lisinopril keeps more potassium in the body…so they fear heart arrhythmia) but my readings are always normal, except when I LISTENED TO THEM, and added meat protein, so I was already eating too much spinach, avocado, kale, hempseed.. all HIGH in potassium per serving….which put me just at the VA 5.0 scale as "high" but MOST labs show potassium at 5.3 as high… VA lists 4.8 at top end..? so who knows which is right?
I find if I just stay with my vegetarian diet I have good numbers on all tests, and my EGFR goes up to Stage 3 ~38 GFR not down into Stage 4 ~28 GFR. Other people may have different issues, and get different results, but buy using food as first defense medicine.. you may not need lots of supplements.
On the CCB drug ( Amlodipine) my BP shot to 160/75 which horrified me.. I have one kidney, and already had a small stroke in 2013..so keeping to the NKF guide on <120/60 BP is my goal.
I am trying to use only good nutrition, and limited supplements to stay /get healthy.
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For years I have been taking one daily supplement-tablet of "WellKid" (for children 4-12 years),
which is meant to be an all-round multi-vitamin-supplement with Vit.D, B12 etc.
This supplement also includes Iron etc. and claims to contribute to cognitive development etc.
I decided to take this supplement many pre-dialysis-years ago and since it is really meant for children,
I take it as a very gentle supplement for myself and looking at my regular blood-tests,
(pre-dialysis and since being on dialysis) my body seems to take it very well .
P.S. I have been a vegetarian for decades and I always make sure my food is very fresh and,
apart from my fresh food and "WellKid" supplement, my body does not seem to need any other supplements... (touch wood...)
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I don't remember when, but sometime after starting PD two and a half years ago, my Neph prescribed an Iron supplement daily. Every few months I also have Iron I.V.'s as my iron gets as low as 10% then my red cell count begins dropping.
Dr also prescribed Nephro-Vit, a vitamin supplement specifically for dialysis patients.
I used to take fish oil and vitamin C, but quit both when the Dr's retired me from working, I couldn't afford anything not absolutely necessary. I have noticed since quiting the fish oil that my blood clots more normally than before. So mino scratches do not run down my arm and drop off near as long as it did before.
I do not know the cost of any of these things. I am Blessed, between Social Security and Veterans Administration I never see a bill for anything. Which is a great thing for me, If I had to pay even 20% of some of these costs I probably would be able to afford to be on Dialysis at all. I'd soon sicken and be gone.