Hi all. I’m a 47 year old woman who was just diagnosed with LADA last week. My a1c was 6.8 and GAD antibodies were positive. I didn’t have any trouble getting my GP to test for antibodies, as I don’t fit the “normal” T2 profile, and, most relevantly, my son was diagnosed with T1 at age 3 (he’s now 16).
She is referring me to an endo, and I’m just curious as to what to expect at my first appointment, and what they are likely to recommend. I’ve been someone else’s pancreas for 13 years, so I honestly don’t need any education in management. My son has had a pump and sensor virtually from the beginning (originally Medtronic, occasionally Omnipod, and currently has a t-slim and Dex G6), so I’m familiar with the options.
What is the sort of “standard” protocol for newly diagnosed LADA folks? I’m guessing they will want to start me on insulin, but is it likely to be only long-acting at first? If I’m on insulin, I want a CGM for sure, but if I’m just on long-acting, I’d be okay with shots for now. Once they want me to start dosing at meals, I want a pump for sure. Honestly, I think the most stressful thing for me right now is not knowing how long it will take me to get my endo to realize that I am not your typical newly diagnosed patient and that I just need to be pointed in the right direction…
Anyone with LADA want to share their experience or have words of encouragement for me?
So sorry you have it, but at least you found out early before dka etc and due to your son and all of your knowledge you will be much better prepared than most.
For me I was in dka when finally diagnosed and had a lot of damage etc. my bg is also difficult to manage. 2 years in I was diagnosed with hashimotos also and managing that with meds has made my bg a bit better but it is still pretty bad.
By the way, lada is type 1- lada is not a diagnosis code. Don’t let them give you type 2 meds, just go on insulin.
If they don’t believe and trust you right away, get another endo, assuming that’s possible in your situation. It’s not worth trying to educate a doctor who won’t listen. Most will be very happy to talk with a patient who is well educated on their condition.
Thank you for your responses. Is it reasonable that when I just called to make an appointment, they scheduled me 2 months out? The nurse said the referral came over as T2, and I corrected her on that, but it didn’t change the wait time for an appointment. I know my familiarity is with T1 diagnosed in kids, which is very serious, very fast, but I guess I expected more…urgency than this???
Make sure T1 is listed as it makes a difference in getting insulin, CGM’s and pumps. Also I would make sure you call them and ask if they got the records corrected as your endo will walk into the room thinking you are a T2 and if it is switched on the spot he/her won’t be as prepared with the best options. Some endos are great and would realize your knowledge right away, but there are jerks out there too.
Endos are really back logged, my old one used to make appointments 4 months out and my current one makes them 5 months out but they have wiggle room to fit people in usually if they have too.
If you start feeling like you need insulin because of not feeling well etc, your GP should at least be able to prescribe a long acting insulin for you, which you might pursue that if at all needed. Also I’m sure you know to watch out for DKA.
Go in maybe with a log of your numbers, or a compatible meter they can download. (you can call and ask) They usually like to see you carb counting too. I guess a lot of what to expect is going to depend on your endo. To used to qualify for CGM’s and pumps they like to have proof of testing 4 times a day? I think they still do require that unless they’ve changed the protocol? Someone more recent might be able to help with that more. Kids always qualify for things easy.
LADA takes more time to fully develop than when kids get T1. How fast depends on your body, sometimes it can be months but usually it is a lot longer, years even. Your pancreas keeps making some insulin until it finally gives up completely. Hence the non emergency response. But also listing you as a T2 didn’t help. But things can always change quickly so that’s why I warned you about watching out for DKA. It is also a little more erratic dosing for it because you will have fluctuations for longer. So one day, you will make enough insulin and another you won’t. That will usually last longer than what happened with your son.
Also, did they send your GAD and cPeptide (if they tested it) to the endo you made the appointment with?
A lot of doctors, especially family docs, aren’t familiar with adult-onset type 1. To them, and even some endos, believe anything diagnosed after a certain age (18ish), to be type 2, regardless that you are positive for GAD antibodies.
You can possibly get in faster with the endo, if the doctor who ran the tests above called in the referral. Call them and ask them to call in the referral and to schedule an appointment for you as soon as possible.
In the meanwhile, since you know what’s what, you might want to begin logging your bgs, testing in the morning when you get up (before you get out of bed), before and after meals (typically 2 hours, but some foods you need to test sooner and others later), and before bed. I’d log your meals too, so you can see for yourself (and the endo) what’s happening with your meals. I remember going to the endo with my log books in hand and they would look at my G4 report from three months back and ask why I was high or low, pointing to the number. I was able to flip to date and time in my log book and tell them why. I remember the shocked look on their face that I could tell them why!
It might seem like a lot, since you’re used to your son having a CGM, but even with my G4 I tested 10+ times a day. It will give you and your endo something tangible to look at and to work from.
You could consider a Freestyle Libre as cgm, without alarms. Seems like you would get good trend data, log your meals (carbs etc), activity. You can get an idea how sporadic or predictable your pancreas is with insulin production.
I was classic kid T1D, diagnosed in kindergarten in the dark ages, so a much different experience than you had with your son. But soon to switch to tandem pump and new adventures with control-IQ.
I was juvenile diagnosed, so can’t offer much… But wanted to point out that an Endo isn’t your only option. Internal medicine doctors may choose to specialize/care for diabetic patients, too. I see one because I hate the only endo near me, for exactly the reasons you fear. I love my Internist, she’s great! And much easier to get an appointment with.
Thanks for all the replies. Very helpful info. They did test my c-peptide. It was 0.9, but was not fasting, so not overly useful.
I actually popped one of my son’s sensors on last night. (We have a large stockpile of supplies.) Once it started giving readings, I hung out in the 160s, 170s all night. No real measurable breakfast spike today, but it was my normal breakfast - natural PB on half an english muffin, so obviously not real carby.
To be totally honest, I’m probably going to wear the sensor for a few days to get some data and then hook up one of my son’s old pumps. I’ve spent the past 13 years figuring out pump settings/basal rates, etc. I don’t see much reason to wait 2 months.
Edited to add: I know that sounds a little crazy, and it really would be for most people, but I really do know how to do all of this. Especially with a CGM, I don’t see much downside.
I was diagnosed as T2 at age 67 by my internist. I wasn’t responding to T2 treatment and decided I should seek diabetic help. I phoned the nearest endo clinic. I got an appointment with a CDE much quicker than an endo. They have been great to work with. She was the one that ordered the appropriate tests and diagnosed me as T1. If you have a choice you might want to think about it. I had no diabetic experience and they guided me through basal and bolus settings for me.
Don’t get too aggressive with the insulin upfront. I, personally, wouldn’t even deliver insulin at 160, so you might be leaning a little bit aggressive straight outta the gate.
It does still take time to get to know your body and the feeling of low BG. It affects everyone a little differently and you can expect to have a very strong reaction to low BG upfront until you get used to it. Insulin is a little bit like bourbon. If you have never had it before, it will hit you kinda hard, compared with people who have been drinking it for twenty years.
Even those of us with a lot of experience sometimes get extreme lows that result in critical failure. Just gotta pass along the obligatory warnings, I’m sure that you are aware. Your dosages will be a bit different than your sons. It will takes some time to get to know your settings. You will have lows if you are taking insulin.
If you are honeymooning, your dosages will be inconsistent.
You two are both new to insulin, so it might be useful to talk to one another: Low doses of Insulin
I felt so much better when I first started insulin!!! I don’t think it’s crazy at all. I think you already have a lot more knowledge than some people that have even been diabetic for a while! Just remember you are different from your son and in a honeymoon phase for probably longer than you expect, so it will be different.
Well, since Wednesday night, I’ve been wearing my son’s Omnipods. (He currently uses t:slim.) I got online and figured out a starting basal rate based on weight, and then cut that in half, to be conservative. I just took a stab at a bolus ratio, and it’s all been working really well. I’m obviously benefiting from the honeymoon smoothing everything out, but so far so good! I’m having a Zoom consultation with a CDE from Gary Scheiner’s crew today (he wrote Think Like a Pancreas for those who don’t know him), so I feel much better than I did just sitting around for 2 months waiting for an appointment, knowing that my BG was high. Thanks again all, for the encouragement and support!
