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Author Topic: Vitamins & kidney donors  (Read 19826 times)

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Offline tantemorte

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Vitamins & kidney donors
« on: March 04, 2013, 04:54:30 PM »
I am an LKD,2.5 years.
I have been struggling with fatigue issues since the donation.
I am now under the care of an endocrinologist. One of the first things she put me on was Vitamin D and B12 because,as she said (and my bloodwork backed it up), "All LKDs are short of these vitamins".I must've looked at her like she grew another head because she asked me,did I not know this?.....NO.
Nobody ever told me,in work-up or post-donation care, that I would need to take extra vitamins that I had not needed before.     

Offline fulfordpat

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Re: Vitamins & kidney donors
« Reply #1 on: March 04, 2013, 05:06:41 PM »
Hi I am also a donor to my sister 2010. I do hope that you feel better soon. The problem that you are having with needing vit. B was an issue for me in 2007 without the thought of giving my sister a donor.  I thought that I would share my story with you to let you know that what you are dealing with can happen to a person that has never given a donor :) Take care
Pat Fulford


Offline tantemorte

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Re: Vitamins & kidney donors
« Reply #2 on: March 04, 2013, 05:26:39 PM »
Perhaps this should have been my first post:

While it is very possible & not unusual to have various levels of various vitamin deficiency in the general population itself,the point of this post is that:

VITAMIN D AND B DEFICIENCIES ARE KNOWN AND COMMON SIDE-EFFECTS OF LIVING KIDNEY DONATION.

As such,every potential and post-donation kidney donor should be aware of this and ensure that they they take steps to discover if they are and take appropiate supplementation as needed.

My endocrinologist herself was of the opinion that all LKDs need at least Vitamin D supplements.Why?Because the kidneys have a vital part in the body's production/conversion of it....and LKDs' ability to do this is obviously impaired.

 

Offline sherri

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Re: Vitamins & kidney donors
« Reply #3 on: March 04, 2013, 05:31:21 PM »
I would be interested to see the evidence based medicine on the claim that all living kidney donors are deficient in vitamin D and B. Perhaps you can ask your doctor for some articles. Would be interesting to review.I have had my vitamin D tested and come up at the lower end of normal but not deficient. I do take a multi vitamin and calcium with vitamin D as I had before. What about people who are born with one kidney, wouldn't they also be deficient? I can understand why someone with one kidney may deficient in vitamin D but I don't know if it across the board. Definitely something to be screened for.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline elephant

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Re: Vitamins & kidney donors
« Reply #4 on: March 05, 2013, 07:51:01 AM »
Huh, my gastroenterologist recently tested my Vit D level.  It was low, but I thought that was from the ulcerative colitis I developed after donation.  For sure no-one mentioned this possibility at the time I donated.  Anyway, I take Vit D. and a B complex.  Donors can ask for a Vit D test at their next blood workup.
Thanks, tantemorte

love, elephant

Offline Orchidlady

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Re: Vitamins & kidney donors
« Reply #5 on: March 05, 2013, 08:23:06 AM »
Isn't that weird - my Vit D levels were tested last year after a bone scan showed a slight thinning in my spine. The levels were low so my PCP recommended a higher daily dose of Vit D. I thought maybe it was just age and being fair skinned.

I know my husband was told to take extra vitamin D for a couple reasons. First, they said since he is supposed to use sunscreen religiously when outdoors, he would get little from the sun. And they also said that people with kidney disease have trouble with Vitamin D as the kidney is involved in making it "work" the way it is supposed to as a vitamin.

Very interesting and appreciate the information! 
Donated Left Kidney to Husband 10/30/07
Barnes Jewish Hospital
St. Louis, MO

Offline Clark

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Re: Vitamins & kidney donors
« Reply #6 on: March 05, 2013, 12:17:31 PM »
I think the issue is function, not just donation status.  We all lose function as we age, more or less, and while our remaining kidney rebounds some after we donate, there has been a loss of nephron mass and number. Supplementation of D, the B complex, calcium, and more is increasingly recommended for those over fifty, presumably to do with decreasing function in absorption and synthesis from dietary sources.  Perhaps we just fit an older digestive profile?  Some studies I found:

Canada:
Bone and mineral metabolism and fibroblast growth factor 23 levels after kidney donation.
Young A, Hodsman AB, Boudville N, Geddes C, Gill J, Goltzman D, Jassal SV, Klarenbach S, Knoll G, Muirhead N, Prasad GV, Treleaven D, Garg AX; Donor Nephrectomy Outcomes Research (DONOR) Network.
Am J Kidney Dis. 2012 Jun;59(6):761-9. doi: 10.1053/j.ajkd.2011.09.019. Epub 2011 Nov 16.
https://www.ncbi.nlm.nih.gov/pubmed/22093959
"The FGF-23 pathway may be activated in living kidney donors who show early biochemical changes compatible with chronic kidney disease-mineral and bone disorder. Whether these changes influence bone mineral density and fracture rates warrants consideration."

Germany:
Vitamin A metabolism is changed in donors after living-kidney transplantation: an observational study.
Henze A, Raila J, Kempf C, Reinke P, Sefrin A, Querfeld U, Schweigert FJ.
Lipids Health Dis. 2011 Dec 7;10:231. doi: 10.1186/1476-511X-10-231.
https://www.ncbi.nlm.nih.gov/pubmed/22151790
"LDKT is generally regarded as beneficial for allograft recipients and not particularly detrimental for the donors. However, it could be demonstrated in this study that a moderate reduction of kidney function by unilateral nephrectomy, resulted in an imbalance of components of vitamin A metabolism with a significant increase of retinol and RBP4 and apoRBP4 concentration in serum of donors."

Poland:
Serum concentration of vitamin D and parathyroid hormone after living kidney donation.
Bieniasz M, Kwiatkowski A, Domagała P, Gozdowska J, Kieszek R, Ostrowski K, Deptuła A, Durlik M, Paczek L, Chmura A.
Transplant Proc. 2009 Oct;41(8):3067-8. doi: 10.1016/j.transproceed.2009.09.039.
https://www.ncbi.nlm.nih.gov/pubmed/19857678
"Prospective studies may be essential to determine metabolic changes after nephrectomy among living kidney donors."
Unrelated directed kidney donor in 2003, recipient and I both well.
626 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline tantemorte

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Re: Vitamins & kidney donors
« Reply #7 on: March 05, 2013, 06:23:46 PM »
Well,the way I see it, the drop in kidney function after donation is the equivalent of 20 years' worth or so of normal aging-related decline...in other words,our kidney function is now 20 or so years 'older' than us.So it does make sense to make that comparison,especially with younger pre-donation ages. I'm only 35,donated at 32.
Anecdotally: I spent the entire spring & summer in the sun,walking with my 'recipient' to & from dialysis,and that was the summer I was told I have low Vit. D.No amount of sunshine would raise it... 

Offline poodles

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Re: Vitamins & kidney donors
« Reply #8 on: March 08, 2013, 06:09:14 PM »
Very interesting topic as I have also been told my Vit D, B12 and thyroid levels are low. I am now taking supplements, lots & lots of supplements actually which cost a small fortune but I do feel considerably better with them & much worse without. My gynecologist & allergist caught the deficiencies in their routine blood tests. This really surprising as we practically live outdoors.

Absolutely nothing was about this was mentioned prior to or post donation at the Donor Clinic.

Convinced my GP to order a bone density test after I turned 62 by saying I wanted a base measurement to check against future tests. Luckily my bone density is normal for my age although not sure exactly what that means. Does it mean average or good as in healthy.

We need a comprehensive monitor list so we can check for ourselves that everything necessary is being watched. As an example I discovered that my GP was not checking kidney function on my annual medicals.

Offline Fr Pat

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Re: Vitamins & kidney donors
« Reply #9 on: September 12, 2013, 06:57:36 AM »
I'm just "bumping up" this older thread, since there was recently a question regarding possible vitamin deficiencies in donors.
   Fr. Pat

Offline ftgriffith

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Re: Vitamins & kidney donors
« Reply #10 on: September 15, 2013, 02:24:08 PM »
I have just passed the two year post donation anniversary. I began taking a multi vitamin, vitamin D and iron daily about a month before surgery as the pre-surgery tests found my levels low. I have continued this routine, only decreased the iron and d supplements to every other day. I go back to the donation team at the hospital I donated at each year and they gladly run the follow up blood check tests for me. I believe the vitamins have me feeling better than I felt pre donation and have kept all my blood levels in normal limits.

Offline Mizchelle

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Re: Vitamins & kidney donors
« Reply #11 on: September 16, 2013, 09:33:56 AM »
Thank you so much for bringing this up again.  I specifically asked my Surgeon about Vitamin D deficiency in LKD before and after Surgery. I was told that it had no correlation both times.  I was suffering from major fatigue after four months of surgery and was told consistently that this was normal up to a year by other donors. I started taking vitamin D and I don't know if it’s coincidental or not but after two weeks I began feeling more energetic and I continue to take it daily.  I’m not a coffee or energy drinker and even if it is normal to feel fatigue up to the first year, I’ll continue taking Vitamin D to give me the boost I need until I feel up to speed again.  :)

Offline Mooge

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Re: Vitamins & kidney donors
« Reply #12 on: September 16, 2013, 02:27:00 PM »
My doctor advised me a few years ago to start taking D supplements, long before I thought of donation.  She told me later that since they started testing for vitamin D deficiency on a more regular basis, nearly EVERYONE they test needs supplements. A result, apparently, of people spending more time inside and less outside. (Or perhaps a drug company conspiracy....) So maybe that's why so many LKDs are turning up D-deficient, just because they are tested for it??

Offline tantemorte

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Re: Vitamins & kidney donors
« Reply #13 on: September 16, 2013, 05:30:37 PM »
So,at latest:
I am now on 3000 mg vit D daily,which barely put me in the minimum range for vit D,after a year of being on it,increased every 3-4 months(I started out with 1000mg) . This is in addition to me spending hours daily outside in the sun with no sunscreen. My calcium level has finally hit the minimum normal too,after a year or so of being too low (the low calcium level is what tipped my endo off about the vit D level).
My long bones finally stopped hurting (side effect of low calcium).
I am now also on 1000 mcg of biotin,as the regular vit B (B100 & 1000 of B12) still left me deficient...I could tell by the skin & nail problems I was having. I would develop red patches of skin at the corners of my mouth & my nails were peeling & splitting horizontally. The extra biotin resolved these.
I have never had these issues,any of them,pre-donation. All of them showed up within a month of donation.At first I thought it's part of the body adjusting & recovering but not when none of  these went away with time.

Offline jstx

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Re: Vitamins & kidney donors
« Reply #14 on: September 19, 2013, 08:37:17 PM »
This is an interesting topic. I've been away from the message board a while but when I started my new job I had bloodwork done (they offer some basic tests 3-4 times a year for $0-very reasonable depending on the test). My vitamin D came back in the low normal to slightly deficient range. I chalked it up to working at a desk and almost never being in the hot TX sun. And it may be just that but it is interesting to hear varying thoughts.
Donated left kidney on 6/6/11 to a recipient I found on LDO
Johns Hopkins Hospital
Baltimore, MD

 

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