Question about supplements

[Cheller0566]

I was diagnosed in 2020 with polycystic kidney disease stage 3. My GFR has been declining since then. It went from 48 in 2020 to 38 in 2022. One month ago my endocrinologist told me to start taking NAC and NAD supplements. I just had bloodwork done and my GFR went up to 49 and my creatinine went from 1.5 to 1.2. Could the supplements have helped?

[Marvin8]

No way you'll ever know for sure because the funds needed for research won't be spent if the supplements aren't profitable for the drug companies. Double-blind, placebo controlled studies in large populations cost a fortune. Use your own best judgement and ask your doctor.

[userotc]

No-one will know if the supplements helped or not but, if the renal marker changes are significant, its obviously possible. The literature is conflicting on NAC for CKD but Ive linked below from a naturopathic practitioner that I respect and he is positive.

draxe.com/nutrition/n-acety...

But I suggest care with regular monitoring.

It's encouraging that an endo is prepared to recommend supplements (at least if he has had relevant training?) with medication for CKD limited imo. We asked mum's nephro about them ~5 years ago (she is CKD 3) when her eGFR was low (~36) and he said it wouldnt improve. His response was not very helpful so we increased her vitamin D supplementation ourselves. Her eGFR improved from then and latest is 76 although we cant be sure vit D is the reason (she has significantly improved diet and wellbeing etc). But the nephro is happy to take credit for the improvement!!

She also takes cordyceps to try to improved her proteinuria but we regularly monitor her kidney results withrespects to all supplements she takes.

[Futureckd in reply to userotc]

I have no knowledge before reading this post about NAC and NAD. But I take vitamin D supplement 2000 mg, B12 500 mg, and folic acid on daily basis, as my nephrologist suggested saying that if they don’t benefit they won’t harm the kidney. I am stage 4 ckd patient (according to NKF).Could you please share how much vitamin D your mom is taking now? Thank you.

[userotc in reply to Futureckd]

She takes 2000iu/dy vit D (~50mcg) which maintains her serum level at ~100nmol/l after taking higher levels to get there. We test x2/yr.

She also takes a B Complex containing 400mcg B12 and 667mcg folate.

[Futureckd in reply to userotc]

Thank you, I take the same types and doses , but only B12 not B complex. I will ask my doctor if I can take B complex . I want to correct the D supplement units, I take 2000 IU per day and not mg as I wrongly stated above.

[userotc in reply to Futureckd]

Sorry didn't see that reply! Phew!Re vit B, Seaside Susie on thyroid forum is "expert" and usually recommends Thorne Complex which mum takes.

[userotc in reply to Futureckd]

I suspect/hope your units are awry eg you mean 2000iu not mg (see conversion below).Whilst I understand what your nephro means, vit D3 can cause harm ie toxicity, if not careful so regular testing needed. Also need vit K2 for bone absorption only.

belabelwise.org/html-table-...

[Futureckd in reply to userotc]

Thank you, I corrected my units in a previous reply. The neph doctor was clear on what vitamins I can take D3, B12, and folic acid. Nothing more . I will check with her about other vitamins.

[userotc in reply to Futureckd]

OK. I'd be interested to know what neph says about needing K2 with the vit D to ensure its absorption is in right place ie bones. Docs never advise that but all naturopathic practitioners (and people like Seaside Susie!) do.

[Futureckd in reply to userotc]

Yes, thank you. I am worried about my bones as I am on VLPD without ketoanalogues (KA). I am reading a lot about the types and prices of KA but not brave enough to start on it. I don’t think my neph doctor will support taking KA, but it won’t hurt to asking. Even my renal dietitian wants me to increase the protein intake from food and not supplement by increasing beans, legumes, and rice.

[oceansplash in reply to Futureckd]

What was the reasoning between "real food" and beans, rice, legumes? That's a lot of what i'm eating now. I'm having a lot of pain all over and thinking it's all the rice, beans etc. (lectins).

[Futureckd in reply to oceansplash]

According to my reading, the protein in beans produces similar bad waste like meat which is hard on ckd. Also the acidity in rice is high and I follow the diet of Lee Hull that overall food by the end of day should be more alkaline. My renal neph does not agree but that what I follow, although not 100% but in majority of what eat. So my feed is mostly vegetables and fruits.

[oceansplash in reply to Futureckd]

So how do you get enough protein then? That's where I'm lost. I don't eat tofu. Just a couple oz. of Salmon or Chicken a few times a week.

[Futureckd in reply to oceansplash]

The recommendation for this diet is tofu, mashrum, and corn to get protein, also the white part of the egg once in a while . I personally eat veggie burger based on black beans but not much, hummus, and plant based yogurt sometimes and started plant yogurt milk but not much also. That is why I said I am not 100% yet as I don’t like tofu and hesitant to cook mashrum or eat white part of eggs. Also I eat 24 gram of protein per day collected from many things, everything has protein in small amount, 1-2 gram here and there. I don’t take the keno analogous protein supplement yet, I am reading about, because it is recommended to those who eat very little protein from food like me. I noticed the drop in BUN in blood test, protein in urine, weight and BMI, but not in creatinine level in blood as it is still at 3.2 and the gfr less than 20. I noticed that my BP is reduced as I have high bp and on amlodipine 7.5 mg per day for sometime and BP was high. I walk everyday around 1.5 hours with the speed I can. And yes my neph dietitian is worried about reducing the daily protein that much. This is my third month on this diet, I wait for the blood test that I do once a month to see what to do next.

[oceansplash in reply to Futureckd]

Thanks mushroom is o.k., but sensitive to corn. I'll keep looking!