Apropos to Diabetes Health Magazine’s latest feature on “Where Have All the Insulins Gone?” I had no idea that the evolving insulin market might have been bad for some patients — much less the celebrated changeover to synthetic human insulin. Meet Jim Daly from Massachusetts, who shared his brutally honest story with me this week (reprinted uncensored, except for inserted links, with permission):
My name is Jim. I am 32 years old, type 1 since age 10 (1984). I love your website. I am glad I found it.
I hope you will listen to my story. I just went on humalog and lantus after being on Lilly’s iletin II pork insulin (mixed R and NPH split dose regimen) for many years. I admit my control wasn’t great and I have been a “lazy” type 1 diabetic for many years but I do have good reason for this. I was on humulin from 1986 thru 1992 and had severe episodes of hypoglycemia unawareness and also instances of not being able to get glucose in time to avoid a loss of consciousness. The final two times – I fractured my skull and bruised my brain during these severe hypos.
I saw a Dr. William Black at the Joslin and
was advised to let my sugars run a little higher and was also put back on
beef pork insulin at my mother’s urging. My mother was type 1 from age 4
thru age 74 (she died of a stroke). She was a wealth of knowledge on the
subject of living with this disease. She was insistent that the “new”
insulin was to blame for these severe lows.
By the way – my mother had no complications other than possibly heart disease (which led to her stroke). This may not be directly diabetes related but more of a lifestyle issue. I was able to obtain pork insulin in 1998 when Lilly took beef-pork off the market. I also began corresponding with the IDDT a England based diabetic public interest group founded on the principle of insulin choice – synthetic or animal source. I have tried to obtain animal insulin to no avail. I even complained to Lilly. My phone call was met with a request for my mother’s medical files and a Lilly magazine in the mail. Seems that the fact that animal insulin is better for me doesn’t matter when a company is faced with an “economic” decision.
After being told no by my second opinion Dr. I
gave up and am compliant with the “physiologic regimen” of minimum 4 shots
and constant monitoring. It’s a horrible way to live. The lows are more
debilitating than on pork and I feel more disabled now than ever. I wish
someone would listen. I know what most would say – “better this quality of
life than when you are blind, missing limbs, kidneys fail, etc.” I
maintain that “newer” insulin isn’t always better. Animal insulin was
better for me, but I can’t get it. No doctor will “go along with” what I
The “industry standard” – the Joslin Guide makes no mention of different warnings animal vs. synthetic, and animal insulin is a mere sentence stating that is was highly impure when first developed. IT WORKED FOR OVER 80 YEARS AND PORK INSULIN in recent years WAS HIGHLY PURE according to reports I was literally yelled at and berated by an endocrinologist this last September.
Granted, I have been running A1c’s of 10 and most recently 11.9. Not good. I was not taking care of myself I know it – I was letting my sugars go high. I do have background retinopathy. I do not have the chance now to be “more vigilant” on my old regimen. I fear the worst on this new insulin – instant death from a hypo. Oh well. I am doing the best I can on the new regimen despite the
fierce lows and the changes in symptoms of lows (my lows before were more “gentle” and now I am experiencing vision changes vs. shakiness as the first sign of a low).
I do feel as though my life is not my own anymore – I am consumed with this disease every second of every day. There are advantages. No more nocturnal hypos (from the regular I used to take at dinner). My sugars are running better and my glycohemoglobin will probably be better. It has been a month now. I just wish that there was a choice for diabetics – animal or synthetic / analog source insulin, especially for those experiencing hypoglycemia unawareness or severe hypos in general. As someone who just “switched”, (or maybe even stepped out of my time warp -) I know this insulin is very different and the feeling on it is also very different. I feel like a zombie on auto-pilot half the time. The other half of the time I am cranky and not being very nice to my partner.
Hopefully, with time this will pass as I adjust to the new
regimen that is so highly promoted. Hopefully I will survive without a
hypoglycemia catastrophe. Too bad we all have to put up with this footnoted side effect mentioned in the DCCT research. This is how Lilly’s
decision has impacted my life. This is how this disease has impacted my
Thanks for listening! Jim
You’re welcome, Jim. I wish I knew what else to say.