high glucose post tx

[donnia]

I just talked to my TC and he tells me that my blood sugars are high. I have never been told that my blood sugars are high, so I don't really know how serious it is..... I did my labs yesterday, it was NON fasting, and he told me that my blood sugars were 441!!! What the heck! I know the Prednisone can affect it and he said it should come down.... I have been taking 30mg, then 25mg for 2 weeks, alternating 25 - 20 2 weeks, 20mg 2 weeks, alt. 20 - 15 2 weeks, 15mg 2 weeks and now I am alternating 15mg - 10 mg for 2 weeks.

Anyone have any info for me?



I do not have a glucometer.... I have kept copies of all my labs and here are my glucose levels from them....
9/2 - 441
8/15 - 366
8/6 - 273
7/28 - 203
7/21 - 121
7/14 - 100
7/7 - 108
7/4 - 106
7/2 - 100
6/30 - 185
6/27 - 166
6/25 - 136
6/23 - 90
6/20 - 110

I had my transplant on 6/05/08

[okarol]

What immunosppressants are you on? SIROLIMUS is used to decrease the immune system's response to a transplanted organ. It is marketed under the trade name Rapamune by Wyeth.
Here's a recent article:
Anti-rejection drug sirolimus may increase risk of diabetes after kidney transplant http://www.news-medical.net/?id=38612

[MIbarra]

I am on prograf (tacrolimus) and this caused my blood sugars to go nuts! They had to put me on insulin. I was diabetic before, but took nothing. I controlled it by diet alone.

It seems to help me to make sure I eat either an hour before or after I take my prograf. It helps a LITTLE.

[donnia]

Okarol, I am on Rapamune and also Prednisone.... My tx center told me that the Prednisone increases my risk of diabetes but didn't say anything about the Rapamune.  Doggonit!  I am going to call my neph tomorrow and see what we need to do!

MIbarra.... I have never had any problems with my blood sugars, now they are through the roof!  I will try eating an hour before or after I take my Rapamune and see if it helps any.  Hopefully my neph will perscribe a glucose meter tomorrow.

[Zach]

You may also want to begin an exercise program to help control your glucose levels.
http://familydoctor.org/online/famdocen/home/common/diabetes/living/351.html

[donnia]

Thanks Zach!  Wonderful site!!!

[jbeany]

Are the blood tests always done fasting?  At the same time?  Walmart sells a tester for $9, and 20 packs of strips for $10.  It's called a Reli-on Ultima.  Don't wait for your doc to write a scip for it - just pick one up.  Start checking your sugar just before breakfast for a while.  A couple weeks worth of fasting blood sugar results should help you and the doc figure out what to do about it.

[donnia]

No, the tests are not done fasting or at the same time.  I think I had 2 pieces of wheat toast with honey and a cup of coffee with cream and 3 tsp (kinda heaping) of sugar before my test on Tuesday and my glucose was 441.  I just went and did a fasting lab and should get the results soon.  Thanks, I will go get a tester!

[Romona]

I am going through this too. My transplant coordinator wants my fasting blood sugar under 100. It has been running 108 or 109. My family doctor disagrees. He did a three hour glucose test and my fasting blood sugar was 87 at his office and was very good during the test. I am frustrated. Right now no one seems to want to monitor my labs. My transplant coordinator hasn't seen my labs from June,July or August. why they aren't in the computer I have no idea. My family doctor has seen them, but will not notify me if something is wrong because they haven't ordered the tests. I seem to be the only one that gets my labs and reads the results. My coordinator told me she only looks at creatinine, uric acid, bun and things that may have to do with the transplant. Good Luck Donnia!

[okarol]

After the transplant our coordinator was no longer involved and Jenna is seen by the organ transplant doctors and nurses. Since they are a 2 hour drive away Jenna does her labs locally.

After every lab of Jenna's they fax us a copy from the transplant hospital, also a copy to our local nephrologist as well. We keep a notebook with all the labs.
Sometimes after a lab (which are once a month now - a standing order so no lab slip is needed) they forget to fax it so I call and remind them. This has worked well but took a few repeated requests to get the standing order and the faxing of copies as a routine for the hospital.

[circleNthedrain]

donnia, sorry to hear about you blood sugar.  I had a similar experience with my first transplant.  Let me start by saying I was a PD kidney patient for almost 10 years before my tx, and I had NO blood sugar issues during that time.  I became diabetic after my transplant, due to the prednisone.  The diabetes continued through my second tx, as did the pred., a total of 17 years.  I took insulin this whole time.  Now I am back on dialysis for almost two years and once I stopped the pred., NO MORE INSULIN, my blood sugar is completely normal.  I hope yours will return to normal when they reduce your pred dose.  I don't know anything about Rapamune, I took cyclosporine.  I will say, even with the diabetes, the 2 tx's were well worth it!  Best of luck.

[donnia]

Thank you so much for giving me hope circle!  My prednisone will be lowered next week to 10 mg then in 9 months they will try to take me off of it completely.  I reeeeaaallllyyyyy hope by blood sugars get back to normal.

[donnia]

I went in yesterday and did a fasting lab.....  aagghhhh!  Fasting glucose level was 355!

Neph prescribed meds and a glucose meter.  Also getting me into a dietician.

I have started using my Wii more and doing more aerobics.  Yesterday I did 15 minutes and today I did 30 minutes. 

[okarol]

I am so glad you're staying on top of this donnia! 
I have been seeing a nutritionist and it's really helped me change my eating.
I was surprised to see you had REAL sugar in your coffee! Making small adjustments make a big difference.
Good luck!

[Joe Paul]

Sheesh, I hope they get you figured out!!

[donnia]

Sheesh!  My blood sugar last night wouldnt come down below 178.  I drank loads of water and exercised.  I was soooo exhausted!  I finally ate 1/2 cup of cottage cheese with a few thin slices of turkey in it.  This morning at 6:30 my blood sugar was 221.  I walked 1/4 mile on the treadmill and it was 188.  I took my meds and ate one piece of wheat bread at about 8:30.  At 12:30 my blood sugar was 321!  WTHeck?? I had a hamburger pattie and now I am going to take a nap because I have been up since 5:30 making tamales with my mother in law... We got 36 dozen made.  I am exhausted!!! 

If anynone has any ideas on how to get my blood sugar down.... I would greaaaatly appreciate it!   

[jbeany]

Okay, not eating will NOT help lower your blood sugar.  I know that seems counter-intuitive, but it's true.  If the body's source of food disappears, your blood sugar bottoms out.  Your body reacts by dumping all the stored glucose out of the liver into the blood stream.  When you check your sugar, it's actually up higher than it was before. 

You need to eat small, regular meals that have a balance of carbs and proteins.  It's best not to eat either carbs or protein without a small bit of the other to help balance it.  It's not hard once you get used to it - if you have crackers, have turkey or cheese.  If you want a chocolate bar, have a bit of peanut butter with it, or have one with nuts in it.  Consider having a small carb/protein snack every night before you go to bed.  This helps stabilize your sugar in the morning.  The hormone surge that everyone naturally gets when it's time to wake up lowers your blood sugar, but if you haven't had the snack, it can lower it too far, causing the liver to dump sugar again.  Try it for a week and see if that helps!

[donnia]

Thank you so much jbeany!  That make so much sense!  I will give that a try!  I am so new to this I am clueless.  I need so much information... I am starving for informaiton!    It worries me so much tho.  I have to talk to my doctor on Monday.  he has me on 5mg Glipizide in the am and 5mg in the pm.  I am thinking that is not nearly enough.  I took my Glipizide tonight and I have to wait 30 minutes before I eat.... well after I waited the 30 minutes and checked by blood sugar was 271... what the heck am I supposed to do???  Am I supposed to eat??? Will that risk it going higher??? 

Does anyone know of any message boards for diabetes?

[Romona]

Donnia, I don't know if there are similarities between Prograf and Rapamune. With Prograf some patients develop drug induced diabetes within two years of  their transplant. I don't believe it is a permanent side effect and can be reversed. I read the side effects of Prograf on drugs.com or something like that. If you look it up and look for information for Professionals it often goes into more detail than what is supplied to patients. It also shows study results and percentages.

[Romona]

I looked it up. After Rapamune was approved there have been reports of hyperglycemia in patients using Rapamune. Also high trigylcerides which you posted about before.

[jbeany]

It takes quite a while for any real long term damage from high blood sugar to occur.  The docs are going to start you out on the lowest possible dose, and work their way up, because it's better that you have slightly higher than normal sugars for a bit than it is for you to start having really low ones too suddenly.  Not everyone can tell when their sugar is too low, and that can be really serious immediately.  Just take the pills, adjust the diet, and keep track of the blood sugars.  If they need to up dosages, they will do it very slowly! 

[kitkatz]

www.healthboards.com/boards/forumdisplay.php?f=45

Message board for diabetes patients

http://community.diabetes.org/n/forumIndex.aspx?webtag=adaindex

American Diabetes Association Boards

[Joe Paul]

Good advice - Only thing I can add, is that stress sometimes plays havoc with blood sugar levels too. Just keep doing what you are doing, just try not to let the high blood sugars dwell in your mind. Good luck, you will do fine.

[pelagia]

For those with experience - What is the thinking about staying with complex carbohydrates versus refined carbs when you have high blood sugar?

[jbeany]

Overall, they have the same effect on your blood sugar.  The refined ones will tend to make it jump faster, though.  Of course, any dietitian will tell you to eat the healthy options, and not the processed ones, diabetic or not.