Tuesday, April 27, 2010

An hour at the endocrinologist

What a way to end a Monday. An hour long in-depth discussion with my diabetic endocrinologist. Whew!

We discussed my upcoming surgery to remove the uterine polyp, and I wanted to know what to do with my diabetes control during the anaesthesia. He reassured me that my anaesthetist will be able to handle the situation and would have dealt with diabetics before. He also told me in no uncertain terms was I allowed to let anyone take me off the Lantus insulin, as that could put me into diabetic keto-acidosis. Which is bad! He even went as far as saying if anyone tries - call me at home! Wow! :D

Endo wanted to know why I was having the polyp removed, and why I was doing IVF? I explained that it was due to hubby having a vasectomy, and that the odds of a reversal were nowhere near as good as for IVF treatment.

My most recent HbA1c test was done last September (about 7 months ago!) and it was 8.1, which is the highest I've ever had. At that stage, Endo did say that although it's not an ideal number to get pregnant at, he would only get really worried if it was around 12. But now that the idea of pregnancy is so much more serious, he said it would be better for me to get it down to the mid 7's if I can. If you are diabetic, you're probably reading that and going "nuh-uh! That's still too high!" but Endo explained that it makes sense for me, since I am a very brittle diabetic.

Please don't read "brittle" as "badly controlled". I do a gazillion blood sugar tests each day, and constantly correct with insulin, and count carbs religiously. Endo even said that "You're working soooo hard, just not seeing the results." It's not fair, basically. He can't explain why my diabetes is so crap, no matter what changes or experiments we do. I have been tested for everything under the sun. From thyroid disorders, or extra adrenaline, to stomach disorders, to eating disorders, to other weirdly-named things I can't remember. He's tested me for it, to try and discover the missing element which causes my blood sugars to fluctuate so wildly and for insulin to act so randomly.

So I wasn't surprised when he started to bring out the blood test order form and write me up a shopping list of tests to do. But I did nearly fall off my perch when he asked, "Do we even know if you have diabetes? Has anyone ever tested you for it?"

What's the test? I squeaked. I mean, this is major. If I've spend 22 years treating the wrong disease...

"Oh it's simply a blood test to look at your c-peptide level. Here I'll order one for you."

Apparently I could have something called MODY (Mature Onset Diabetes in the Young), which is like having type 1 diabetes AND type 2 diabetes at the same time. He doesn't think it's likely, since my insulin requirements are so little, and MODY usually manifests as insulin resistance requiring more insulin.

But the other reason to test for c-peptide is to see if I am making some of my own insulin. That could help explain the unpredictable lows I get. We shall see, I'm off to take the test in about 30 mins.

Ooh, speaking of tests, I looked over his shoulder and saw the result of a couple of my fertility tests from the other week. Looks like I'm ovulating no worries! Yay! :D

We spoke about getting me on a CGM for a 3 day trial. The hospital paedeatric department owns one, and they may be able to lend it out to me to try and help figure out what is going on.

The idea of going on an insulin pump also came up, and although in the past I've been reluctant to pursue the idea, the need to get better control of my blood sugars in preparation for pregnancy has changed my mind. Also, it's the only thing I haven't tried. Unfortunantely, funding for insulin pumps is now hard to come by in our region of New Zealand, and Endo was grumpy when he told me that if I lived in the a different area only 3 hrs away, I would almost certainly already be on a pump. Grr. Can't. Win.

And in a case of terrible timing, I may have also just said "no" to a cure for diabetes. Endo already has one patient on a trial in another city in New Zealand where a company called LCT Global is having remarkable success with clinical trials of their Diabecell product. Diabecell is an injection into the abdominal cavity of thousands of little cells harvested from specially bred pigs. These cells replace the damaged cells from the pancreas, and make insulin. The magic ingredient is how the pig cells are coated in a special alginate (read, seaweed stuff) that makes the cells invisible to the human immune system. So no need to take any immuno-suppressant drugs.

Twice Endo has offered to put me on this trial, which has in some cases cured diabetes and in all other cases lessened the blood sugar fluctuations. And twice I've had to decline because I want to get pregnant. One of the rules of the trial is that you can't reproduce after having the implant, since they haven't studied the effects through generations yet. Sigh. I will just have to wait. The good news is that they hope to be "bringing it to market" in 2 years.

That's a lot of stuff. I came home and my head was pounding with a headache, which is still with me today. I'm off work and taking it easy. Oh wait - got to go and do more blood tests!

Catch you next time :D

No comments:

Post a Comment