I was a type 1 diabetic for at least 50 years before I had any diabetes complications. I had used pork insulin that contained C-peptide during those years. C-peptide helps with the prevention of diabetes related complications, including neuropathy. The synthetic insulins I started using in the 1990s did not contain C-peptide. That is when I began having some peripheral neuropathy, and some mild retinopathy. My A1c had been below 6.0 for a few years, but the roller coaster control I was having with highs and lows caused the complications. My neurologist gave me EMG tests and diagnosed my neuropathy. There was pain in both feet and ankles, but the only really bad pain was in one toe on my left foot, and an area on the side of that foot. The throbbing, burning pain felt like electrical jolts were surging through those parts of my foot. I could not sleep and had to walk the floor for hours each night. Eventually, I was able to sleep a few hours at night and nap during the daylight hours. The worst pain was always at night. My doctor offered to write a prescription for a medication to help relieve the pain. I told him I did not want medication. I was concerned that I would become dependent on medications, the pain would be so much improved, and I would not work hard enough to get the control I needed to eliminate the neuropathy problem.
I had been noticing that the pain was much worse when I had been having some high blood sugar for several hours during the day, for a few consecutive days. If I was not having those highs, the pain was not so bad, and I could sleep. I knew I had to have tighter control, and eliminate those highs. My lows and highs compensated for each other and gave me a very good A1c, but the shock to the body caused by frequent changes from high to low to high...can cause complications. I worked very hard at the beginning of the new century and had fewer highs and lows. I rarely saw a high above 180. I was careful to take insulin to correct those highs when they occurred. My neuropathy was better, but there were still some nights that I lost a few hours of sleep.
Friends in a couple of online diabetes support groups encouraged me to use an insulin pump. I was assured that would enable me to have more stable control of my blood sugar levels. I started pumping in June, 2007. After three months of pumping I had the best control I had ever seen. I was in the range 60-150 at least 90% of the time. The symptoms of my neuropathy and retinopathy had disappeared. My eyes were examined at the Joslin Diabetes Center in 2009, while I was there for the Joslin Medalist Study participation. I was told that there was no sign of diabetes damage in my eyes. I was sleeping soundly at night without any neuropathy pain. At the present time I am keeping my blood sugar levels in the 70-140 range more than 90% of the time. I doubt that I will ever have any more of those complications again. It is wonderful to be complication-free!!!
Richard,
I have been on a pump for 9 years now…and lately I am struggling, I went into the hospital one day after having 4 blood sugar lows in one day…the 4th time I went down to 30.
I have not felt the same since I came out of the hospital.
I feel like giving up. I am very depressed.
I have had type I for 25 years…
I work very hard at taking care of myself…
Wished I could see blood sugars like yours…
The Life of a Type I can be s a living hell at times…
I have sunk back in a deep depression
Wished I could get back TO being myself.
I started out on Pork Insulin as well in 1985.
I did not know that about the C Peptides with pork insulin…of course it does because it is not man-made.
It seems anything that man touches he messes it up.
But if God designed it—it works beautifully.
I can’t go to sleep with all this neuropathy pain.
I dont think I have had one good nights sleep in weeks.
It sounds like Richard you have been blessed to have done so well all these years.
I have a medically documented miracle of being bitten by a fiddle back spider.
The little country hospital sent me home to die…
I had ketones of 900 and sugars over 600…
God miraculously spared my life that night…
When I woke up my sugars were 80.
I need him to do another miracle.
I dont know what else to do, I as well dont want to go on all the drugs.
Drugs help nothing --and end up making your feel worse in the long run.
The side effects are worse than the disease itself.
If I could just get relief from the pain, then I would be okay.
What was the downside of the pork insulin and why is it not so widely used any longer?
Cynthia, have you purchased the book “Pumping Insulin” by John Walsh? It is sometimes called the “pumper’s bible” by people who have used it. I bought mine on amazon.com.
marizona, pork insulin is not a basal/bolus kind of insulin. Carb counting was not possible while I was using it. I have much better numbers, more stable control and not many highs with the modern day insulins. I had many highs with pork insulin, but it had the C-peptide in it which probably kept the highs from causing me complications, like neuropathy. I started haveing complications with the newer insulins since they do not have C-peptide, but my blood sugar levels are great. I prefer the better numbers, even thoughI no longer have C-peptide. The stable control has eliminated my complications, so I don’t need the C-peptide now.
Many people had allergies to the pork insulin. I think that is one reason it was stopped in the US. It is still sold and used in Europe and Canada. People in the US can order it and use it here. I know some people who do that.
Cynthia, did you have good levels with your pump during the previous years? It sounds like you need to test your basals. They may need to be lowered considerably, so less insulin will be going into your body. Your carb ratios may need to be altered too. Another possibility is that your insulin sensitivity may have recently changed. If you are more sensitive to insulin then you need to raise the sensitivity levels on your pump. That will also reduce your insulin intake. I know what you mean by depression caused by running low so much.
I hope you have not been experiencing neuropathy pain very long. If you haven’t, then getting good control again should lead to the pain gradually decreasing. Maybe it would eventually disappear. If your pain is very bad then maybe a pain relief prescribed by your doctor would be a good idea while you are trying to improve your control.
Hi Richard,
The first 15 year I was on shots…I only used the pork insulin the 1st year. I think the next insulin I used was Humulin
Now I use Novolog with my Medtronic mini-med pump
I was not that well-controlled the 1st… 15 years of my life…
My husband left me with 3 little boys, and no child support.
I went from having good insurance to none. So life became a constant struggle to provide for us…I could only afford one bottle of test strips a month.
I was under a lot of stress all the time.
When I went on the pump in 2001 my A1c was an 11, I now have it down to 7.3 but I can’t seem to get it any lower than that.
This summer I walked and did classical stretch.
I will certainly check out the book you mentioned, I have heard of it.
I have tried in the past to get my endocrinologist to lower the insulin rate on my pump…but he wouldn’t do it.
After I ended up in the hospital with 4 low blood sugars…he finally lowered it some, but not much.
I am stuck with this Dr. because of my insurance.
I will check into all that you said…
I have felt for sometime that I have to much insulin
I just turned 50 this past summer so I am sure my body has experienced some changes with that as well.
I am a returning student.
A friend of mine another who is a Type I …said that when you study your brain uses Glucose as well.
Just as if you ran a marathon which means more low blood sugars
I did not know that.
Richard you mentioned a few things I need to check on
The insulin sensitivity I am not aware of and what that is
After I returned home from the hospital —the hospital called and said that my potassium was low.
So that may explain why I was hurtring all over.
Without potassium your heart won’t even work --My heart had been fluttering for some time
I am now taking liquid minerals and a potassium pill.s
Also without minerals vitamins don’t work.
keeping the mineral level in the body is crucial
I will look into everything you mentioned Richard.
Thank Yu
Thank you.
.
HI Cynthia, Another great book is called “Think LIke A Pancreas” - - it’s a great book by a tye 1 diabetic who is also an exercise physiologist and diabetes educatior. It is intelligent, serious, and has a great wit that will make you laugh and not feel alone. One thing that stuck me in your last post was that your doctor doesn’t budge on your insulin needs. That is just ridiculous. My sister has a doctor like that too, but since she started taking matters in to her own hands her BGs have been pefect. No severe lows or highs anymore at all. That’s how I have always treated my diabetes. I change my basals and boluses when I need to, and have extremely tight control. My doctor encourages it. You should really read Think Lke A Pancreas as it has a ton of formulations and information to help you with your bloodsugars, much more than a doctor can give you in a 10 minute visit. Don’t change anything without the knowledge of how to do so, be we diabetics have the right and the duty to ourselves to manage it to avoid death (be it with low bloodsugars or constant highs). You have to check your bloodsugars more frequently if you are going to change your basals, boluses, so don’t do anything if you can’t do that. First thing I would do is read Think Like A Pancreas. I’ll probably catch a lot of flack for advising that you control your own basal/boluses, but it is keeping me and a lot of others in very good control.
My endo programmed my pump when I started pumping in June, 2007. she said to call her if I needed to. My BG was over 300 that evening, and I called her. She gave me advice that did not help. I had read the manual and I had Walsh’s book, so I deleted all the basal rates, insulin sensitivities and carb ratios and started from scratch. Her numbers were not even close to what I needed. After a few days I had things going smoothly, then a month later my control was great. We have to eventually do all our own adjustments, but it was not fair I had to do so at the start.
Thanks Marizona for information about the book----
A while back the Dr. had some things wrong on my insulin pump…and I suffered for a long time because of his error.
I have felt for some time that I should take matters into my own hands when it comesto insulin levels.
I had even told him that I was going to start a exercise program and wanted to lower my insulin levels, and he wouldn’t do it. .
It is my body and I am the one who has to live in it 24/7—that is for sure.
I will go to Barnes and Noble and see if they have the book.
Type I’s know what they are talking about when it comes to their own bodies—and Dr’s should work with us.
Thanks Marizona, and no you will not catch any flack!
I am very independent…
There is one other endocrinologist in the office I may just switch to him who knows…
Thank You Richard …I receive what you are saying…
I just went to Borders bookstore and got "Think like a Pancreas"
Does this book tell me how to do my own basal rates…and how to figure them up as to what you mentioned Richard?
What do I look at in Think like a Pancreas to do this?
I have felt for some time that I needed to do this.
This endocrinologist did not even respond when I was in the hospital the 1st time, and then when I was in the hospital the 2nd time he did not even get back with the Dr on call or me til 2 days later.
Can you believe that?
Many times over the years If I had listened to all the Dr’s and all the drugs they were trying to put me on, I would be a drug addict by now.
But as I said I hate drugs—and did not go on any of them.
You have given me some valuable information all of you.
I will be asking more questions…
Mary Tyler Moore was right when she said we have to be our own Dr.'s, nurses, dieticians, personal trainers, etc, etc…
I check my blood sugars 6 to 8 times a day…
Marizona recommended the “Think Like A Pancreas” book. Many friends have praised that book, but I don’t have that book, so I am not sure it tells how to do your own basal rate, but I suspect that it does. I know “Pumping Insulin” explains doing basal rates, that is the one I own. They are both wonderful books.
There is a section called --Fine-Tuning Pump Basal Rates, I am reading that now.
But I had another severe low this evening around 6pm. I definitely need to lower my basal rates.
But want to make sure I am doing it right…
Richard you may have already answered this question but---- why do the new insulins NOT have the c-peptides in them ?
Hi Cynthia,
That’s so great that you check them 6-8x a day; I do too. When I switched to the pump, and then on to MDI again, I checked it almost every hour to see what it was doing though. I would strongly recommend for the first week or so writing every single number down, what time, how many carbs you ate, how much bolus you took. And actually, to find the correct basal rate. What I did was fasted as much as I could, to make sure that the basals were ok without having to muck with boluses a lot at first.
You had asked if the book Think Like A Pancreas tells how to do it. It really does go step by step and guides you through everything.
I read it cover to cover! But there is a big section that deals specifically with basal/bolus adjusting.
I will have to get that book “Pumping Insulin” too. I have heard good things about that as well!
Thanks Marizon I am reading that part of the book at this time…and in a few days I will be doing what you mentioned for about 3 days to get my exact rates and then I will make the adjustments!
Thanks so much…
The modern day synthetic insulins do NOT have C-peptide. Even the pork insulin some people purchase from other countries have supposedly had the C-peptide removed. The only insulins containing C-peptide were the old beef and pork insulins sold many years ago, prior the the discovery of modern day synthetic insulins.
The Eli Lilycompany experimented with putting C-peptide in the newer insulins, but then stopped their experiment and never continued with it. There was never any explanation, so far as I know. I have read in the forums that some people have bad reactions to C-peptide if they get too much of it. That could lead to law suits. I am not saying that is the reason we do not have any C-peptide in our insulin, but it does make sense.
