Hi everyone! I was hoping to learn more about LADA honeymoons. I was diagnosed last month, but have had high GAD65 for almost a year. My current Endo won’t put me on insulin until I’m 250+ for more than 3 days straight, without coming down. I don’t agree with this. I am going to a new Endo at the Barbara Davis Center next week and hope to have support to stay under 150. I’m on a Dexcom and try to eat low carb. I exercise a lot.
Some weeks I’m fasted 140/150 going over 200 multiple times a day. Sometimes I rise way past when I go to sleep (always in bed by 10 PM), at midnight or 1 AM and slowly come down to that 140/150. This fasted 140/150 with numbers floating around 180 during the day lasted around 2 weeks straight. I never got below 110 even when going on runs/ eating very low carb. This past Sunday I was at 250 at bedtime, went down a little bit, came back up, went down a little bit, came back up, and then slowly came down till the morning when I woke up at 170 (all seen on my Dexcom).
After that, this week has almost been PERFECT. Fasted around 110/120, below 100 couple times a day. I even ate pizza and only went up to 159 (when previously it brought me well over 200 for a couple hours). Can your honeymoon fluctuate this much? Do you think the high numbers on Sunday night/ Monday morning kicked more insulin into my body, or “woke up” my pancreas? I almost feel like I don’t have diabetes which is amazing, but I’m nervous the Barbara Davis center won’t prescribe insulin for the days I am over 200 because the last 3 days have been beautiful and then in a week I can go right back to the higher numbers (right?). While I appreciate this honeymoon & break, this is hard to manage. I’d love some perspective and advice. Thank you
Since you are using dexcom, and very knowledgeable on you BG patterns, I think a good endo would prescribe insulin to be used as needed. But understand their caution for those not having continuous monitoring of bg.
Thank you! I am hoping they can see my “bad” days too. I’m pretty aware & manage as best as I can but I think on some days I cannot keep walking/ running/ jogging up my stairs to bring it down.
Yes! I use it for exercise & carbs currently so that we can see trends - I love the reporting mechanism. Very helpful for docs I think to see when you ate /exercised. Barbara Davis said they’ll download my clarity at the beginning of the appointment.
Hello and welcome! You are very wise to go to the Barbara Davis Center. For many people in early LADA, fast-acting mealtime insulin, usually at very low doses, is helpful. Let the people at BDC know your concerns about the high BGs, and of course be your own best advocate. You are doing great so far, and really facing this head on.
I was diagnosed LADA 11 months ago. I started on insulin right away and so far don’t seem to have had my insulin needs increased. High GAD65 and IA-2.
Personally I think getting under control ASAP is the best way to prolong your honeymoon.
I take 8u Tresiba (daily) and 1-2u Fiasp (with meals). I keep my meals between 30-45 carbs. I also take Januvia (DPP-4) and Jardiance. Since you still produce insulin those medications might also benefit you.
I also started taking Vitamin D, partly because my initial test were low but also because there is active research if vitamin D can stop/slow progression. I figure if it doesn’t its not going to hurt me. Plus my endo re-test my vitamin D every 3-4 months.
I am an adult type 1 diagnosed in dka- even though I went to a gazillion docs for several years I was never diagnosed at all and then misdiagnosed finally and not put in hospital until advanced dka. I would definitely start on insulin early to avoid things like this and to help prolong your honeymoon etc. It will not be easy prolly since you still have insulin production but I am sure you will figure it out. Goodluck!
Thank you! Do you have experience on honeymoons? Its weird to me that for 2 weeks straight I woke up at 140/150 and for the past week I’ve been 110/120. It is unpredictable which I think makes dosing hard. Any advice before I see Barbara Davis? Thank you
Thank you for sharing, Chris! I take Vitamin D also. I think I was diagnosed on a fluke, by testing for antibodies since I have Hashimotos (and Celiac). I’m curious to hear what the doctor says today.
Count on this for your honeymoon, however long that lasts.
But in the meantime, and for afterward, you are right to use a CGM, that will give you the detail you need to adjust, both now and later.
The honeymoon phase can cause wild fluctuations. I was misdiagnosed too, but I was luckily put on insulin, long lasting one at the beginning and then a fast acting one as the medications all made me sick. When they even thought I was just a type 2.
Endos and doctors really fluctuate on how they treat you. There are blogs on here that talk about the ones we disliked and the ones we loved. I think getting a second opinion is best or even a third…until you find a doctor that you get along with, it makes all the difference. BTW if a different endo is not available try an internist. I refused to go back to the first endo I had, switched doctors to an internist who is the one that put me on a fast acting insulin and when the group hired a new endo sent me to her right away where I was immediately tested and diagnosed right.
I have heard the thought that insulin might help prolong the honeymoon phase so some endos are more likely to prescribe it.
The NP I saw at Barbara Davis put me on 5 u of Tresiba in the AM and gave me humalog Jr if I go over 150 (so I can start with half a unit). I’m thrilled. Best doctors appointment I’ve ever had. She really listened and helped with my goals. Thank you for the support!
I agree with the Vit D. I also take a bunch of DHA via fish oil capsules. Was finally diagnosed accurately 1 year ago. Not on insulin yet. Added the Fish oil after articles on this site
