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Author Topic: Kidney Donor - Graves Disease - Creatinine Levels  (Read 13407 times)

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Cindy

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Kidney Donor - Graves Disease - Creatinine Levels
« on: February 27, 2011, 06:09:22 AM »
Hi,

Five years ago I was diagnosed with  Graves disease that resulted in several years ago undergoing treatment for the thyroid by swallowing radioactive iodine to kill it.  Since that time I have taken synthroid to replace the hormones that no longer are produced by my thyroid.  This requires continuous monitoring to ensure that I am taking the correct dose.

One year ago I donated a kidney to my brother.  When I was in for my 1st anniversary check up on my remaining kidney recently the Drs. noted that my creatinine level had risen since my six month test (I go semi-annually to have my kidney checkups).  I am in Canada and they had risen from .93 at the 6 month level to 1.6 at the year date.  In the meantime it was also felt that perhaps my synthroid dosage was not replacing my thyroid at the appropriate rate (making me slightly hypothyroid) so the Dr. increased that dosage also.

No changes in lifestyle during this period - eat healthy, exercise daily, low sodium, no alcohol, other drugs or smoking and drink alot of water daily.  The only health issue I had since the transplant was a case of skin leukoclastic vasuclitis (inflamnation of small blood vessels) on my lower legs and arms noted during my 6 month checkup as it was summer and the Dr. noticed it on my legs.  At that time they ruled out that this had affected my remaining kidney.

Has anyone had any experience with hypothyroidism/hyperthyroidism and how it might affect my creatinine levels?

I go back for further testing in two months on both the kidney and the thyroid to see if this is perhaps why the numbers rose.


Thanks!
Cindy

Offline Michael

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #1 on: February 27, 2011, 07:51:56 AM »
Cindy,

I did a Google search of "hypothyroidism creatinine clearance" and found several medical studies indicating a relationship between hypothyroidism and elevated creatinine levels.

http://bit.ly/eDFMUB
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Offline Fr Pat

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #2 on: February 27, 2011, 06:50:18 PM »
     I have read that although the adrenal gland is usually no removed with the donated kidney, the ABILITY of that adrenal gland to get its adrenalin into the bloodstream is sometimes (often?) reduced. You might want to make sure that your doctor is aware of this. Sometimes specialists in one area (thyroid) may perhaps not be as up-to-date on other areas. I'm not a medical professional, and have no idea of whether there is any inter-relation between the hormones produced by the thyroid and the adrenal glands, or whether this would influence creatinine, but I just pass along this information in case it might be helpful.
   Fr. Pat

Cindy

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #3 on: February 28, 2011, 11:18:02 AM »
Thank you for your response addressing my concern

Michael, the links you provided on the hypothyroidsim creatinine clearance were very interesting.

Fr. Pat, when going through the testing process for the kidney donation we discussed the adrenal glands and how they affect the hormones in the body especially one with Graves.  The Doctors did reassure me that they though they wouldn't be taking out the adrenal gland with the kidney it might be impaired.  The good news being is that I would still have the adrenal gland on the other kidney and apparently you only need one to keep those hormones in balance.  As it is believed that the adrenal and thyroid glands often have issues if one or the other already does it is a good connection to make.

As I am not considered severly hypothroid I am not sure if the creatinine increase would be due to this.  In the lab ranges I would be considered "normal" but once someone has been treated with radioactive iodine it is not unusual that the numbers have to be reworked to make you feel "normal" even if they are out of the normal range.

The Doctor treating this is very open-minded and listens well so we are trying this for 2 months as I also have other hypo symptoms.  I am really curious to find out if will bring my creatinine level down. 

Has anyone else had the experience of their creantine going up like that after an initial check after donation?

All input and comments welcomed.

Thanks!
Cindy

Offline sherri

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #4 on: February 28, 2011, 11:42:49 AM »
At my two year follow up my creatinine had gone up from about .9- 1.0 to 1.4. The first thing I did was have it repeated and also did it with a 24 hour urine just to see if it was accurate. It came back down to my usual 1.0. I think it just may have been a fluke or lab error but certainly caused me lots of stress. Sometimes some people have had increased creatinine if they have exercised heavily before the draw or if they were dehydrated. Have you repeated since that 1.6?

Sherri
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Cindy

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #5 on: February 28, 2011, 12:12:15 PM »
Thanks Sherri for the reassurance that sometimes this happens.

No, I haven't repeated since the 1.6 yet.  I just received the results on Friday, February 25  The Dr. is uping the synthyroid for 2 months and then repeating.  As I am experiencing hypo symptoms at the same time he wants to ensure that it isn't just that I needed that dosage changed that caused the issue.  As Michael mentioned through the supplied links, being hypo can cause creatinine to increase but it is usually when you are severly hypo.  Though to be fair everyone is different and perhaps I am more sensitive to it with just one kidney.  At the end of the 2 months the Dr. is retesting the kidney and the thyroid.  It takes approx. 6-8 weeks for the new dosage of synthroid to come into effect.

It is stressful.  My brother's , the receipent,  tests are coming back better then mine at the moment though he doesn't know that as I haven't shared this info with him.  I hadn't been exercising heavily nor been dehydrated at the time of the test.  As I do try to live healthy I am not sure if there is anything else I could do to ensure the creatinine levels come down if it is not from the Graves disease.

The suggestion of the 24 hour urine test might be a good one for the Drs. if the standard tests don't show any difference.  I noticed that others had to do this to confirm results when theirs came back higher than anticipated also.

Any thoughts?

Cindy

Offline sherri

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #6 on: February 28, 2011, 01:43:28 PM »
Cindy,

I am generally an anxious person especially when it comes to health so I really felt like I needed the reassurance. I think for many donors we have that underlying anxiety of kidney decline especially as family donors. Have you thought about consulting with a nephrologist or endocrinologist? Have you reported these results to your transplant center and if so are they helpful in helping you sort things out? Maybe the center would consider doing a 24 hour urine just to confirm your creatinine clearance and more importantly to ease your mind. That is the test I did pre surgery so I wanted to repeat the same test to see how much change there had been and if it was within normal limits. Given that you are having some hypothyroid symptoms, hopefully adjusting the synthroid might be helpful.

It is interesting that you said you did not share this with your brother. You might feel like you don't want to put any guilt onto him. If he were having problems with his "numbers", he may also feel a little hesitant to share it with you, his sibling donor, so as not to disappoint you or make you feel guilty. Always fascinating how as siblings we create a new symbiotic relationship with our brothers/ sisters. The attachment is often complex and eludes the professionals. We share more than an organ.

Keep us posted and I hope all works out well for you.

Sherri
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Cindy

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Re: Kidney Donor - Graves Disease - Creatinine Levels
« Reply #7 on: March 01, 2011, 07:59:16 PM »
Hi Sherri,

No, I haven't contacted my nephrologist or endocrinologist about the situation.  Rather I am going to wait the two months and see how it goes.  I am being optimistic about this and have decided when I go in 2 months all will be better one way or the other.  If it is not I know that the specialists are available as they have made it very clear that they are and will always be available should anything come up.

The coordinator of my transplant center is also readily available and I am sure would arrange to ensure everything was okay. 

They all have been wonderful to work with on this "project" and I have no doubt that should additional care be required that they will be there again.

Strange item about this is that my endocrinologist and the nephrologists share a floor at the hospital where the transplant took place - two for one deal!!

I haven't shared with my brother yet as I don't want to worry him unnecessarily.  He is doing excellent and has had lots of challenges of him own to overcome over the years.  It is so great to see him happy and "healthy" after many years of not being so.   If after the two month check things haven't improved I will let him know.  As for him not sharing with me I don't have to worry.  He lets me know everything they say and has always been open about his condition.  No need to worry about disappointment or guilt.  We both went into this with eyes wide open and knew the risks.  Up until the night before the surgery they didn't even know if they were going to be able to do it but we all agreed it was worth a try.  My brother had multiple surgeries for other issues and there was so much scar tissues and rearrangement of other organs that they didn't think they would be able to hook up the new kidney.  They made it happen and it worked.  And as the surgical teams says sometimes the hardest surgeries turn out the best and they don't know why. We don't question, we just celebrate the happy outcome.   I am just so happy that this one was successful!!

Thanks for your support.  I will post when I have more news to share with the group.

Take care,
Cindy

Cindy

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Updated - Kidney Donor - Graves Disease - Creatinine Levels
« Reply #8 on: April 21, 2011, 08:05:01 PM »
Hi all,

Two months have flowed by and I was back at my Dr. today for the results of my latest blood work.

My creatininee is at 1.55 now.  It was 1.6 in February and .93 in August (6 months after transplant).   The maximum lab range is 1.5 though so the Dr. is not too worried as I didnt' increase and I am not much above.  He believes it is very possible that this might be my new "norm".  He is going to check it again though in three months.

There is still some concern that the experience I had last summer with leukoclastic vasculitis might be playing apart in the kidney function.  I am scheduled for very thorough testing of all the body in July by the Drs. that dealt with this challenge and they are watching the kidney also. This condition affected only my skin though it is also known for causing issues with the kidneys and lungs.

All the tests for the Graves disease came back good.  I am feeling great actually so we are all hoping that the kidney is just going through an adjustment period from all its challenges last year. 

Thanks for all the great support from everyone!
Cindy

 

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