Thank you for the welcome and question

Hi everyone,



When I joined earlier I got three nice welcome personal messages from the community here. What a pleasant surprise. Thank you for the warm welcome.



I’ll post my story below my question for those of you who care to read it. But for everyone, my question is what do you think the future holds for those with insulin dependency. I find all kinds of encouraging research from artificial pancreases to artificial insulin production protected from antibodies (diabecell), to insulin patches, to a bunch of phase 2 and 3 trials. Seems almost everything that is tried eventually fails before making it to market and its back to the old pen and pumps.



Seeing as I have been diagnosed with Slow onset Type 1 (which I will interpret as LADA) I know I don’t have forever before I become insulin dependent. So what do you guys think the world of insulin dependencies will look like in a few months, a year, 5 years?





So who am I?



Today I am 35 years old. In July 2007 I was overweight, smoked socially, ate terribly, and did not exercise. I had all kinds of minor medical issues start to crop up. One day my GP asked me to go get a 2 hour glucose test and A1C. They came back as a fasting 114 1 hour spike to 177 and a 2 hour 144. A1C was 5.7. She said I was pre-diabetic and needed to make some changes. So that was the straw that broke the camels back and I changed my lifestyle. Lost 40 lbs, eat healthy most of the time, stopped smoking completely, and started weights and cardio 5 days a week. Proud to say I have maintained that healthy change to this day and am in great shape.



So a few months ago I had a blood test done and it showed I think a 135 fasting number. I pulled out the glucose monitor and tested religiously for a month. Looks like the majority of my 2 hour meal numbers were under 110 and never went higher than 140. Most of my numbers looked great save my morning fasting number. (Other fasting numbers were fine, just the morning was bad) Ended up with anything from 110-130 every morning.



I brought these results into new GP and he had me do a A1C and c-peptide. A1C was 5.4. C-peptide was 2.2. He said I was fine. I said I am not comfortable with my morning numbers and he agreed to send me to an Endo. The Endo said I was fine as well but ordered up a GAD and 2 hour glucose test. At the time I did not even know what a GAD test was. The 2 hour test came back at 125 fast, 206 1 hour, and 100 2 hour.



I got a call a few days later from his nurse and basically said you tested positive for GAD antibodies, your a type 1 diabetic, will become insulin dependent soon and doc wants to see you back again sometime to put you on insulin, any questions? I was devastated and confused. I read up as much as I could and went back in. Turns out my GAD test was .16 and normal was <.02. So that does not seem like a major amount of antibody to me. He of course says it does not matter, but from what I read that came mean the difference from insulin dependency in a few years vs a few months. So he prescribed 4U of Lantus to me and that was that.



Since then I have upped my dose to 7 units and started 500mg of Metformin. This has kept my morning glucose between 90-100. When I get home after 5 hours or so of no food its anywhere from 75-90. And 2 hours after eating dinner its usually between 80-105. Once in the last 2 months I saw it at 140 after a huge Thai feast but I do that extremely rarely as I buy into the whole the less you activate your beta cells the less they get attacked and longer you go before becoming insulin dependent. So I am fairly low carb but I do eat bread, pastas, ect from time to time for dinner. Most of the time I don’t even notice anything higher than if I didn’t which is kind of weird.



So anyway, that’s where I am at today. I have looked for a study to enroll in but can’t find much. I take all kinds of supplements that may or may not be helping. I am not the type of person that is comfortable waiting around for a disease to progress. I feel like I need to do something, but everywhere I turn its more of the same. “you’re doing everything you can, there is nothing me anyone can do for you”



Thanks for listening,



Ben

From a blood sugar control perspective, it looks like whatever you are doing is effectively normalizing your numbers compared to where you were before you started your BG management. From a lifestyle perspective, it looks like you are light years away from where you were previously, for the better. As diabetics, that’s the best any of us can hope for. If you are hoping to somehow repair you beta cells and not have to deal with treating your condition, I don’t know if there is anything that can be done to prevent the immune system from going to town on your beta cells once they’ve begun attacking them. I’m over 20 years out from my honeymoon period so I don’t entertain such thoughts anymore.

Not to be the bringer of more bad news, but what more is there to do but the best you can do to manage your condition and hope for the best?

Hi Ben. I agree with FHS’s post and would add just one thought–be sure to use this time to educate yourself. First there is TuDiabetes, which offers a great education. Two good books often recommended on this site are “Think Like a Pancreas” by Gary Scheiner and “Using Insulin” by John Walsh. Good luck and welcome!

Ben, good to see that you’ve got a handle on your diabetes. You’re way ahead of the game right now, and that is great.

As for a cure, if someone can find a way get a T1’s body to turn off the self-destruct mechanism, then many T1’s have a chance at a cure. As for T2, the key will be finding a way to permanently reverse insulin resistance. Right now insulin resistance can only be managed, not reversed. I suspect that even if these two paths to a cure are discovered that there will still be diabetics for which those cures will not work. As you can see from your own history with diabetes, Ben, it is a complex disease. It seems that the more we learn about diabetes, the more that we still have to learn.

Hi Ben:
When I was diagnosed 10 years ago with LADA I was put on a small dose of insulin because it was thought to prolong the honeymoon phase. Also, my doctor said that mantaining good blood sugars might preserve the beta cells. I was in the honeymoon phase for several years and just took a small amount of NPH daily. I agree with the others that you should read as much as you can - especially on websites like this one - and you’ll get a lot of good advice.

Tiny Dancer,



Are you now Insulin dependent? How long did it take you to go from small NPH doses to full dependency? What were you GAD antibody tests at the time?

Hi, Ben,
I was diagnosed with LADA 3 years ago. I just had a trace amount of Islet Cell Antibodies: (just over 5 where under 5 was considered normal). I eat fairly low carb and take small amounts of Novolog before some meals- those where I eat 20-30 g carbs. (2-3 Units) Post meal numbers about 140 at an hour and 110 at 2 hours. I was taking about 6 Units of Levimir but found I was going low especially when I was more active. My fasting numbers stayed pretty stable at around 90-100, and I can go days without taking any insulin, as long as I stay low carb and get plenty of exercise. So it seems the honeymoon phase can last for a while. It has for me.

So glad you’ve joined us Ben. I was misdiagnosed as Type 2 (as were many of us) and put on oral medication which worked for a little over 2 months. But gradually my BG became more difficult to control – ultimately becoming wildly out of control. I switched to insulin at about 6 months from that initial misdiagnosis. It was even longer before I was actually tested and learned I was T1 (or Type 1.5 LADA). Honeymoon periods vary among LADAs. Your doctor is doing what is, I believe, the best practice for honeymooning LADAs – put you on a long acting insulin. That hopefully will help prolong your honeymooning. Your story is a good one – you are truly doing things right. You should be very proud of yourself! Congratulations!

Hi Ben: I always feel weird saying “welcome to the club,” but what the heck, here we all are, and we’re happy you are here, to learn more and get good advice and support. Did you check JDRF’s Trial Connect (https://trials.jdrf.org/patient/index.cfm)? I find that to be useful.

Low doses of insulin/tight control have been shown to prolong the honeymoon in new onset Type 1 diabetes, so you are definitely doing the right thing for yourself. And the two books that Trudy mentioned are excellent resources. Good luck!

Hey Ben! It’s great that you’ve found us here! WELCOME!!! Sounds like you have some pretty good control there!

Let you know in a few years…Im heading into the research field from the ground up…