Well Pancreas, It Was Nice To Know You

Sigh.  I’ve known something was wrong since my blood sugars started going insane while I was on chemotherapy for leukemia.  For the year on chemo pills methotrexate, tretinoin, and M6mercaptopurine, and the prior 50 doses of arsenic (IV), my blood sugars have been impossible to control if I ate anything at all.  So, I did some reading and found that the immunosuppression effects of chemo may have caused enough damage to my pancreas that it no longer produces any insulin.  The weight I gained on chemo make my body resist any insulin (‘homemade’ or shots).  So my blood sugars are insane.

Let me rephrase that.  I can’t get my blood sugars to the level of control I had prior to the chemo, which was essentially that of someone without diabetes.  I took 4-5 insulin shots a day to keep it ‘normal’, but that was a small price to pay to buy some insurance for my eyes, kidneys, and legs.  My last HgA1C (the number that shows 3 month ‘average’ blood sugar, that is helpful for showing overall control) wasn’t that bad in February 2012.  But it was up by 1.5 points from pre-chemo.  That’s not acceptable.

While I was still on the chemo pills, I had days when my blood sugars would actually go into the 300s.  It hasn’t been that high since I was diagnosed in 1995.  Most days I went into the 200s.  My ‘old’ normal was to have a fasting blood sugar between 65-85mg/dl, and a rare 100-105mg/dl.   Now, with tight monitoring over the last week (and a trial of different insulin dosing patterns), I can’t get it below 130mg/dl.  That’s not acceptable.  I’ve been ‘eye-balling’ my carbohydrate intake for months, but started writing down everything this week.  It’s not what I’m eating.

My weight gain since being on chemo has also been an issue.  Insulin stores fat (and I’ve had to use more insulin).  Fat makes the body resist insulin so it needs more insulin; it’s a vicious cycle.  I’ve been eating around 1400 calories, and I’m not losing weight (I was told to consume 1400-1600, so I’ve been at the low end).  But I’m having to use a lot of insulin, so what I’m eating is being stored.

I’ve seen my internal medicine (primary care) doctor regularly, and e-mailed her with what has been going on.  She confirmed that the chemo could have made my pancreas useless as far as insulin goes.  I’ve been resistant to seeing any of the local endocrinologists because of bad experience in the past.  The one I saw seemed to want things to get ‘bad’ on paper before doing anything  proactively.  I don’t work that way.  When I see trends going south, I want to do something to fix it.

What is the rationale behind watching something get to the undesirable stage before doing something?  When someone has a heart attack, does the doctor wait until they need CPR before doing anything? NO !  I don’t want vision problems.  I don’t want to go on dialysis. And I don’t want anything amputated.  I want to minimize my risks by taking care of things before I have other symptoms or complications.

I got an e-mail from my primary doc this morning.  She wants to refer me to an endocrinologist, and told me that we have a Joslin Diabetes Center doc here in town.  The Joslin Diabetes Center is the biggest researcher of diabetes in the world.  I’ve known about them for at least 15 years, and have read some of their older books.  They are ‘da bomb !   I told her I’d be happy to see someone that follows their protocols. No problem.  SO there is hope. There is someone with direct access to the biggest collection of data on diabetes. I can’t ask for more than that.

I’ll be doing even tighter monitoring and recording until I see this new doctor.  I want to have the most amount of information I can to give to him/her at the first appointment.  There’s no point in going in to be told to keep track of things, just to go back again if I can have it to start with.  I have to get this blood sugar business taken care of.  I’m enough of a medical train wreck.  If I can DO something, I want to get after it, and get it done.