Holy @#$! Amazing Stories, Vol. 4: Quest for Animal Insulin

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):

Hi Amy,

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 IIPork_insulin 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
want unfortunately.

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
life.

Thanks for listening! Jim

You’re welcome, Jim. I wish I knew what else to say.

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15 Responses

  1. Felix Kasza
    Felix Kasza February 5, 2006 at 7:51 pm | | Reply

    You don’t know what to say? I can help.

    Even on Lantus, it is possible to maintain an HbA1c of 10 with no lows at all. In fact, I am hard-pressed to imagine how one could possibly drop low if one tested regularly, while maintaining an average BG of 200 mg/dL.

    But that’s the crux, isn’t it? It seems your correspondent doesn’t like frequent testing. That and a low-glycaemic-load diet are the keys to nice, smooth, blood sugar.

    Yes, it takes work and effort. And no, it does not require animal insulin, the opinion of your correspondent’s late mother notwithstanding.

    Oh, and that reminds me — animal insulins, like fish insulin, are still produced in small batches for patients allergic to human-insulin analogs. I believe Novo Nordisk sells them in Europe, and a petition to the FDA to allow import in quantities suitable for one’s own use can be made.

    Cheers,
    Felix.

  2. Scott
    Scott February 5, 2006 at 8:18 pm | | Reply

    This complaint is likely to meet with a big yawn from the pharmaceutical industry and the endocrinology profession. However, there have been some studies validating your complaint! The fact of the matter is that if Lilly really cared about patients, it could have abandoned Iletin and replaced it with rDNA manufactured animal insulins. But the reality is that big pharma wants you to buy synthetic “human” insulins which carry higher prices, or better yet, synthetic insulin analogs, which carry even higher prices. It is for that reason that I gladly switch insulins, having used Lilly’s Humalog, then switching to Novo Nordisk’s Novolog (a.k.a. Novorapid) and I will gladly consider Sanofi-Aventis’ Apidra in lieu of that. I do not care about Lilly’s bottom line, and apparently, neither does managed care. In September 2005, Lilly’s market share for insulin sold in the U.S. fell to second place after more than 85 years as the number 1 manufacturer in North America (it now trails Novo Nordisk’s 40% market share … ironic, considering in the mid 1990′s, IMS Health reported that Lilly’s share was 85%). Long live free markets and competition!!!

  3. Anon
    Anon February 6, 2006 at 4:47 am | | Reply

    Animal insulins used to trigger autoimmune reactions, and people ended up taking hundreds (hundreds!) of units a day to combat the corresponding effects.

    One journal article I read talks about a patient in the hospital needing 5000+ units of insulin one day.

  4. Anon
    Anon February 6, 2006 at 9:12 am | | Reply

    I use Bovine Insulin and have done for over 40 yrs, with no complications.
    Personally I would not touch the GM mould that is called insulin.
    Since the introduction of synthetic insulins the complications and death rates have gone up by 40%.
    There are many people that can not use the synthetic insulins and are denied the choice of using the animal insulins.
    On pork and Beef insulin you do not have fits and seizures for a start.
    The people on the synthetic insulins are unpaid guinea pigs for testing the insulins as no long trials have ever been tried.
    Yes the people in the usa can get pork/beef insulin from the UK but at a very high cost and only if a Dr says it’s a necesity. But here is the but most of the Drs are paid by the pharm companies to prescribe THEIR drugs they are not going to help anyone unless the price is right.

  5. Carol
    Carol February 6, 2006 at 11:04 am | | Reply

    Not to judge Jim here, but to present another perspective. I really feel that Humalog/Lantus gave me half my life back, and my pump gave me the other half. Flexibility is numero uno in my book. I’ll take the analogs and frequent testing any day if I can do what I want when I want! With that said, I am truly sorry for anyone who is forced to change treatment tools under duress.

    Does anyone else have an irrational fear of losing their current/favorite treatment method or is it just me?

  6. Kirk
    Kirk February 6, 2006 at 12:43 pm | | Reply

    As I tightened my control over the decades I experienced more lows. Tighter control means more work. As we all know an A1C of 10 is not good. Some people can and do live long and healthy lives with elevated A1Cs,

    I would like to see the studies indicating a 40% increase in death and complications after the new insulins were introduced; I find that claim hard to believe.

    Unfortunately sometimes people do not want to accept change; that is their choice in an ever changing world.

    The technological changes and changes in insulins have had a very positive impact on my life.

  7. Megan
    Megan February 6, 2006 at 12:52 pm | | Reply

    The chances of hypoglycemia unawareness go up the longer you have diabetes. I wonder if Jim considered that his increased hypoglycemia unawareness is merely a result of having diabetes longer than he did when on pork/beef.

    “Personally I would not touch the GM mould that is called insulin.
    Since the introduction of synthetic insulins the complications and death rates have gone up by 40%.
    There are many people that can not use the synthetic insulins and are denied the choice of using the animal insulins.
    On pork and Beef insulin you do not have fits and seizures for a start.”

    Many, many things are GM. And it’s not necessarily a bad thing. I’m willing to bet that complications increased (if they did, which I’m not sure I believe in and of itself) as a result of people with diabetes living longer. Plain and simple- people live longer, more people have complications.

    As far as “fits and seizures” are concerned, I suspect you are referring to hypoglycemia, which is a risk with any insulin treatment.

  8. Megan
    Megan February 6, 2006 at 12:54 pm | | Reply

    In the middle part of my previous comment, I was trying to quote a different comment. I thought it would show up in italics, but I guess I did something wrong.

  9. Kirk
    Kirk February 7, 2006 at 2:58 pm | | Reply

    Megan:

    Please foward the studies showing an increase by 40% of comps ? I read alot and have never seen this information. I am amazed such a thing has occured and I haven’t seen the publication.

    I love Lantus and Novolog, tehy beat the heck out of NPH and R (used them for over 35 years)

    Also Megan you’ll find if you survive without comps for 30 years you will probably never develop them (Joslin)

    Kirk

  10. Megan
    Megan February 7, 2006 at 4:52 pm | | Reply

    Kirk, I did not quote that statistic. I was quoting a person from a different comment and disagreeing with him. I agree with you. I love my Lantus and Humalog.

  11. Kirk
    Kirk February 7, 2006 at 7:49 pm | | Reply

    Sorry Megan I mis-understood. ;-)

    Kirk

  12. Bill the diabetesdoc
    Bill the diabetesdoc February 8, 2006 at 4:04 am | | Reply

    Jim’s story is only testimonial evidence: one person’s experience and nothing more.

    There’s been a lot of hot air, and little evidence, that synthetic-human or analog insulins per se are hypoglycemogenic (I think that’s a new word, BTW!)

    Much more likely, other lifestyle changes were involved in explaining the hypos, or perhaps simple lack of understanding of how to initiate a basal/bolus program.

    Until/unless there are randomized clinical trials of animal-source vs synthetic-human or analog insulins, the controversy will continue, fueled by personal frustrations and without scientific rigor. And such studies are extremely unlikely to be funded by industry or demanded by Health Authorities: there simply isn’t enough data to date to support the need for such studies.

    PS: I’m on Lantus/Novolog basal/bolus program, and would recommend such a program (or a pump) to anyone who’s truly motivated to make lifestyle changes using an extremely complex program.

    PPS to Jim: It’s unclear whether you were under the care of a diabetes team. If you didn’t have interactions with a CDE dietitian to learn carb counting, and a CDE nurse educator, and daily contact with them to review your blood sugar levels vs activity level, meals, and stress levels, it’s no surprise that you find yourself in this pickle.

  13. Kirk
    Kirk February 8, 2006 at 9:11 am | | Reply

    Bill:

    When I went on Novolog and Lantus after a bunch of years oif Type 1 I found my hypoglycemic symptoms were differnt. I had to re-learn what it meant to be low. A little focus made the transition successful.

  14. KathDewhirst
    KathDewhirst February 21, 2006 at 1:14 pm | | Reply

    I have been using Novorapid and Lantus for 2 years which gave me a better quality of life. But have started feeling generally unwell an hour or so after injections, having palpitations and hypo symptoms when I am not any where near hypo. I believe that the GM Insulin may be to blame and am going to try animal insulin. I am a little worried that this GM insulin has not been put through rigourous tests and we are in fact guinea pigs after all.

  15. Dave
    Dave July 10, 2006 at 11:52 am | | Reply

    I have been on Humalog and UltraLente for over 12 years. I found out I was no longer on UltraLente when I tried to refill my prescription last month and was told I couldn’t. When I asked why they told me that Lilly no longer made it.

    I’ve been diabetic for 48 years with no complications. I went on the Humulin insulins because I had very little or no warning of impending lows.

    I’ve always worked very physical jobs, ie hanging drywall, lugging beef and humping boxs of beef, that sort of thing.

    I’m not as young now and have a desk job that entails about 25% physical the rest sitting on my duff.

    Now that all that is over with My question is this; has anyone else lost their drive to exercise or do pretty much anything? I always was very physical my whole life up until the last 2 or 3 years and it seems to be getting progressively worse. It seems I can’t force myself to do anything as far as working out. I’m always tired can’t get enough sleep. I never used to be this way and it is depressing.

    Anyone out there know what’s going on with me? Insulin maybe?

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