Hello all. I was originally diagnosed as Type 2 in 2008 but stopped taking care of myself and diabetes in 2013. A recent hospitalization revealed an A1C of 14.4. The hospital was great and provided a lot of much needed education. I left with a determination to get control.
After eating low carb and not seeing the improvement I expected, I finally asked for a referral to an endocrinologist. I saw him 9 days ago and was tested for GAD antibodies and C-peptides. He said I tested positive for GAD but was still producing insulin and that I was actually a Type 1! He has me on Lantus 40 units and Novalogo on a sliding carb ratio of 1:15 for the rest of this week and if my BGs were still high to go a ratio of 1:10. He strongly recommend that I get a pump and CGM.
Needless to say, I 've been on a roller coaster since then.
Here is what I’m wondering … 1. Could the new diagnosis be wrong? I have a strong history of Type 2 in my family. Longest honeymoon ever?
How bad does insertion hurt with GCM and pumps?
Is there any way to calculate how much insulin is will need if I go to the pump? I’m concerned because I take 40 units of Lantus and have taken 15 units of Novolog today with little improvement. The pump I am most interested in is the Omnipod but it only holds 200 units for 3 days of use.
I also wanted to say thank you for all the information and experiences shared on this forum. It really has been helpful .
Wow. That’s pretty wild! I can’t speak to the accuracy of the diagnosis, hopefully someone else can.
I can say that the pain of insertion will depend on what kind of CGM or infusion set you use. I just got a Dexcom on Monday and inserted my first sensor - I actually had to check and make sure it was inserted properly. I didn’t feel it at all!
The Omnipod MAY still be an option for you. The insertion isn’t too bad. The anticipation is the worst part, and the loud CLICK that it sounds off startles you so bad that you don’t feel the insert. You can request a trial pod to see what you think of it before buying the actual product. It’s “off label” but when I tried an Omnipod my doctor switched me to a U-500 insulin that allowed me to use the pod for the full 3 days. The downside was that I had to bolus about 30 minutes before a meal. For me, that ended up not being convenient, especially when eating out.
Unfortunately most pumps seem to hold around 200-250U of insulin. This is why an insulin pump just isn’t really in the cards for me. The Accu-Chek Combo claims to have the largest reservoir at 315U.
That great news about the GCM. I have searched for a picture of the actual insertion needle but have been unsuccessful. All I seem to find is reviews that are overwhelming positive for the Dexcom ones.
I am thinking I may be in the same boat as you in regards to being able to use a pump. If I have a high resistance to insulin it makes me question the diagnosis but at least I will have the GCM aso a tool to use.
Interesting how Accu-Chek compared themselves to the T:Slim, but not the T-Flex. Thanks for the info.
It’s interesting that it says it’s watertight, and you don’t have to worry about it “accidentally” getting wet, but then shows a guy in a canoe. So watertight against accidental, momentary submersion, but not for swimming. I wish the Vibe (which they say you can wear while swimming) had a larger reservoir!
Hi, and welcome!
I’m an adult onset T1 too. My pancreas gradually stopped producing insulin, so I went from low carb to LC + Lantus to LC + Lantus + Apidra with multiple daily injections using a pen. I had a raging case of Dawn Phenomenon that I just couldn’t address with MDI, so I’m pumping now, and I’m able to program the pump to lift my basal in the night, when I’m asleep and voila! No more Dawn Phenomenon for me! So I love my pump
When I started pumping, I was taking 12 units of Lantus and about 12 units of Apidra a day. We programmed the initial settings on the pump the same way: set the basal for 12u / day and see how the meals / bolus goes, expecting to use about the same 12u. And that’s about right for me.
As for inserting the needles, I’m very thin and use the Medtronic steel needles. I read a hint here that I found very helpful. When getting ready to put the needle in, ever so lightly touch the tip of the needle to the spot I want to put it. If it hurts, move it a mm or so and touch again. With that tip (haha!) I find I very rarely have any pain on insertion. No CGM here yet.
Something that seems strange to me is that 40 units basal is a very high dose for a type 1, I think most people are lower than that but that doesn’t mean you’re not type 1. The pump insertion is not too bad if you use the steel cannula needles, sometimes I have some pain on insertion if they are near a nerve or muscle so best to take them out and start over if it continues. Over all it is an adjustment though. Same thing with Dexcom, it can be painful or not, the insertion needle is much bigger with the dexcom and the device causes more trauma than just inserting something yourself. I don’t think you can do that with the sensor though, but they should make the needle smaller.
tieE…thanks for the link. I didn’t know they even made ones with resovior so large. There doesn’t seem to be too many reviews on it yet but sounds like a a great option.
Buck, I really appreciate the knowledge shared. I’m so glad that the transition to a pump and CGM went well for you. It makes me hopeful that I won’t have to bad a time making the switch myself. So your basal dose stayed the same…I am hoping mine is less for many reasons.
meee, I agree that my basal units are high but I can’t help but think it may have something to do with being treated by doctors as a Type 2. I asked my PCM for mealtime shots to help get things under control but he was very reluctant to do so. Every two weeks when I saw him he would either Increase my metformin or Lantus dosage. I finally asked for a referral because I was really getting frustrated. I was able to lower my A1C from 14.4 to 8.6 in a little less than 3 months but I am certain diet played a huge role.
I did a little online research today and found out that the GAD antibody test also shows as a positive result for other autoimmune diseases . There is another test that can be used for a definitive diagnosis. I had 5 vials of blood taken and the doctor and I discussed 3 of them. Maybe they did the other test too but I will be sure to ask at my next visit.
There definitely is such a thing as Type 1.5 – insulin resistance combined with auto-immune decrease in pancreatic beta cell function – so it’s possible you have that. Auto-antibodies to just one target are not always proof of T1D, so it’s also possible you’re misdiagnosed. But an A1C that high strongly suggests T1. Good luck and hope that you figure out the right dosing for you. We just got our son on a pump today and so far it’s been great. Who knows about whether it will improve BG control but being able to give doses using a remote control through the door while he naps has been awesome!
That’s good, I hope you get it figured out soon… btw type 1.5 isn’t an official diagnosis and most people who have “latent” autoimmune diabetes don’t have insulin resistance. Maybe when you add in some mealtime boluses you won’t need so much basal insulin. If they haven’t done it yet a c peptide may help to figure this out too.
@Christina16 my daughter is T1 & is on the t:slim. While researching, we found that many who switch to the t:slim end up using less basal. That was certainly true for my daughter.
