Why the wait to start patients on insulin?

The first thing that happened that let me start getting the beast of diabetes under control was a switch from oral medications to insulin.

Let me back up a bit. When I was pregnant with my son 16 years ago, I had gestational diabetes. Back in those days (and possibly still today, I don't know), you couldn't use oral medication for treating gestational diabetes, so I had to use insulin. The needles then were quite large and the process was painful. (You also had to use a HUGE drop of blood on the test strips and let it sit on the strip for about 15 seconds before inserting it in the meter, if I recall correctly.) Anyway, I remember sitting there every morning with the filled syringe in one hand, trying to work up the courage to actually push the thing into my skin. I used insulin for four or five months, and it never got any easier, but it did help me keep my diabetes under very tight control.

Fast forward to about five years ago. Metformin was killing my stomach and it was time to switch to something else. I asked my PCP about using insulin, but she shot (no pun intended) the idea down immediately. "Let's try this first," she said, writing out a scrip for glimepiride. Yes, by all means, let's try the product that will help destroy my remaining functioning beta cells without giving me true control over my disease instead of the one that will actually WORK. But because I didn't know any better, I agreed.

Three years ago, when glimepiride alone wasn't doing the job for me anymore, I again asked about insulin. "Let's try this in combination with the glimepiride first," the doctor said, writing out a scrip for metformin XR.

Two years ago, the combination stopped cutting it for me, as well. At this point, all she could do was increase the dosages of both drugs, because my horrible insurance coverage (up yours, Independence Blue Cross, seriously) made it impossible for me to afford anything other than generics.

I finally decided I needed to see an endocrinologist. The first doctor I called actually answered the phone herself. This should have been the first red flag. She had no support staff. When I went into the office, she was sitting at the reception desk (though I didn't know it was her) and handed me the clipboard with the new patient forms attached, then took my insurance card to make a copy of it. Then she disappeared for about 20 minutes. I was sitting there waiting and all I could think was, "Isn't the doctor going to be pissed that the nurse isn't sitting here at the desk?" Then she came back and told me to come into the exam room, and it slowly dawned on me that this was the doctor.

To her credit, she did spend quite a lot of time with me, talking over my situation. I told her my insurance coverage was very poor and said I had to keep things inexpensive, to which she responded, "Don't worry, I'm an expert at that." Then she proceeded to order about $500,000 worth of lab work. (Okay, I exaggerate, but it was a lot.)

Then we started talking about medications. She first suggested increasing my metformin dose, and that was fine with me. Then she said "Actos," and I said no. Then she said "Avandia." I asked her about the cardiovascular issues associated with that drug, and she actually glared at me. "There are no cardiovascular issues with that drug," she snapped. "The endocrinology community is absolutely furious about the way that drug is being looked at now, because the charges against it are ridiculous."

At that point I decided this wasn't the right doctor for me. I just smiled and nodded and let her write the scrip, telling myself I would toss it when I left the office.

And then she started talking about statins, which I flatly refused. I no longer buy into the lipid hypothesis, and in any case I had been taking simvastatin for a while previously and it did horrible things to my short-term memory.

"Oh, I hope you'll change your mind," the doctor said. "This is a matter of life or death."

I couldn't get out of her office fast enough.

This put me off seeing another endo for a long time. Finally, I realized I was probably looking at the last decade or so of my life if I didn't do something about it. By this time, I had finally begun to educate myself and had decided I wasn't going to accept anything other than insulin. And thankfully, after taking one look at the kind of blood sugar numbers I mentioned in my last post, this endo decided to go straight to insulin.

This was the first step I took that let me finally starting getting my hands around this thing, and it took me 7 years to get here. What a ridiculous waste of time and money, and God only knows what it's done to my health in the interim. I will never understand why insulin wasn't offered to me earlier. I get that a lot of patients are very resistant to the idea of starting on insulin, but I was actually ASKING for it and my request was refused. Multiple times. What sense does this make?

None. At. All.

I cringe when I think how many uncontrolled diabetics there are out there who could be benefitting from the use of insulin, and it's not being offered to them. Maybe they don't realize that with today's insulin syringes, the injection hurts far, far less than the lancets you use to get a drop of blood to put on a test strip. (Many times I don't feel the injection at all.) Maybe they're worried about cost. (A vial of insulin costs me $25 at Walmart, far less than I was paying for Actos back when I used to take it.) Maybe they're worried about blowback from their insurance companies. (When I was shopping for better insurance -- a formidable enough task for someone with a pre-existing condition like diabetes -- every company I talked to asked if I was taking insulin. I suppose somehow this disqualified me from coverage, even though I have achieved far, far better control of the condition on insulin than I could have ever hoped for with the oral meds.) Or maybe they just don't know what insulin can do for them. I can't say.

In any case, my issue is not so much with the patients who for whatever reason don't want or can't use insulin. My issue is with the medical community, who insists on trying oral medications for such a long period of time, even in patients who want to be on insulin, and even when it's clear that the oral medications just aren't working anymore. How dare they fool around with the health of their diabetic patients this way?

How dare they?

Welcome To The Wheatless Diabetic

My fasting blood sugar this morning was 98.

To many of you, this probably isn't very impressive. The definition of a "normal" fasting blood sugar is 83 mg/dl (4.6 mmol/L) or less,* so by that standard maybe I haven't achieved anything all that great.

But to me, it was a miracle.

I was diagnosed with Type 2 diabetes in 2004. I was only 37 at the time of my diagnosis. Since that time, I have tried a variety of oral medications to try and get my blood sugar under control:

• Sulfonylureas: I took two different sulfonylureas over the course of the past 7 years: glipizide and glimepiride. They were effective at first, especially the glipizide since it was the first drug I ever used for my diabetes. My HbA1c actually got down into the normal range (5.9%) for a while there. Then my fasting blood sugars started to creep back up again. Then they exploded. But my doctor kept prescribing them, and because I let myself continue to trust her blindly and didn't bother to educate myself, I kept taking them. I am 100% certain this has led to the nearly total burn out of my beta cells.
• Actos: This drug did horrible things to my vision. I took it for about a year, and then my insurance plan changed and the montly cost of Actos tripled. That was rage-inducing at the time, but looking back on it, it was actually a very lucky break, because it made me refuse to use it any longer and thus hopefully helped me dodge the bullets associated with use of the TZDs. (Although this is still scary to me because I have a family history of CHF and I keep hearing about the link between Actos and bladder cancer, so I still don't consider myself to be fully out of the woods even though I stopped taking it five years ago.) I refused it on the basis of cost the next time I saw my doctor, and she replaced it with...
  
• Metformin: I have mixed feelings about metformin. It did help me for a while, especially in the beginning, and I had experienced a few hypos while on the sulfonylureas so I was glad to be on something where hypoglycemia wasn't an issue. However. I had horrible, horrible GI side effects from metformin. I'm talking about chronic diarrhea that lasted for as long as I was on the drug -- 18 months. It got to the point where I was afraid to leave the house. I was still being ruled by denial and did nothing to educate myself, so I had no idea this problem was connected to the metformin. I never did any research, and amazingly (or not), NONE of my doctors mentioned metformin could be the cause of the problem. I even went to a gastroenterologist, and he performed what I now consider to be a totally unnecessary colonoscopy on me, in which, of course, he found nothing. Finally, after 18 months of misery, my PCP said it might be related to the metformin. That's when I started taking the glimepiride. I was later prescribed metformin XR, which I can tolerate somewhat better; it "only" gives me diarrhea every 3-4 days rather than every single day.
  

I have been lucky, I suppose, because my doctors never decided to prescribe a DPP-4 inhibitor for me. I was also spared the horrors of Avandia, although one endo I went to told me the link between Avandia and heart disease was bogus ("The endocrinology community is furious about this because it's so ridiculous," she informed me) and wanted to put me on it. I let her write out the scrip, and then threw it away as soon as I got home. By that point, I had finally started to wake up.

That's a lot of background information, I know, and you have my thanks and admiration if you've actually continued to read this far. But I give it because I am trying to say I tried several different medications in order to get my blood sugar under control. I also tried some changes in diet and exercise, which I will go into in another post.

But by June of 2011, I felt completely defeated. My last A1c (taken nearly a year earlier) was 7.5%; this was actually an improvement over the whopping 9.5% I'd had 18 months earlier, but was still nothing to brag about. My insurance had changed again, to a plan with a $5,000 annual deductible I can't possibly meet and so most medical care (labwork, prescriptions, even doctor's visits) is pretty much out of my reach despite the hefty monthly premiums I am paying. I ran out of my metformin and glimepiride, with no refills left, and had an appointment with a new endo (I had fired the one whose scrip I threw away) a month or so later, so I decided I would just wait to see her rather than see my PCP and fork over the money for that visit when I'd just have to pay the endo again in a few weeks.

Here is a sampling from my blood sugar logs in July and August of this year:

July 1:

Fasting blood sugar: 264
2 hours after breakfast: 286
2 hours after dinner: 183

July 5:

Fasting: 301
2 hours after lunch: 269
2 hours after dinner: 238

July 18:

Fasting: 276
2 hours after lunch: 230
2 hours after dinner: 258

August 9:

Fasting: 275
2 hours after breakfast: 296
2 hours after dinner: 213

I could go on, but I think you get the idea.

Now, here are my blood sugar readings for yesterday.

Fasting: 101
2 hours after breakfast: 115
2 hours after after dinner: 81

And my fasting this morning was 98. This is the first time I've had a fasting blood sugar of less than 100 since 2004. So what if it isn't completely "normal"?

To me, it's a miracle.

That's why this blog exists. I will be using it to document my own journey with getting my diabetes under control. I will be also be discussing my opinions about the ridiculous and often harmful ways modern medicine treats diabetes. I have zero medical training, and I'm not trying to push this way of life on anyone else, because everyone is different and what works for me may not work for someone else. I'm here to talk about the steps I'm taking to change my own life and improve my own health.

I'm also angry that I wasted 7 years and a ton of money on treatment without getting a single benefit in return, and that's another issue I'm going to be talking about a lot. I hope other diabetics might get something of value out of this, as well.

Thanks for reading!

*This whole site, Blood Sugar 101, is absolutely fantastic, by the way.