Hey everybody.
Soo… I’m just gonna go straight in.
Background; I’m 29 years old, with Hashimoto’s Thyroiditis, mother of two, vegan, quite skinny.
Last tuesday I went to a Diabetes Nurse (not sure what it’s called in english), because my Doctor had noticed slightly elevated blood sugars (118.8), and positive GAD-ab.
The nurse told me I had LADA, because of the anti-bodies and the connection to my Hashimoto’s. She gave me a Freestyle Libre to check my glucose for 14 days, and I’m going back on June 2nd.
My blood glucose is all over the place… One morning I woke up with 52.2, the morning after I woke up with 120.6. During the day I have quite a few lows (normally around 61.2, feeling really shaky and dizzy), and sometimes it goes up to 194.4 and even higher.
My nurse never really told me the different ways you can manage this, only that I will most likely need Insulin some time in the future.
My first c-peptide showed 0.76 (after eating) and the second one showed 0.19 (after fasting over night).
Has anybody had it this way?
Right now I’m just overwhelmed with it all, and would rather go on Insulin straight away, than just wait around for my pancreas to die on me. It fills me with anxiety.
How long did it take for you to get on insulin, and are you fully dependent now, or do you still produce some of your own?
Really love this place, I’ve learned so much already!
Thank you /Jenny
Glad to have you as a new member to the club, although I’m sorry all this happened to you.
I’ll let one of our LADAs talk with you - just wanted to say ‘hi,’ and ‘hang in there.’
If you feel shaky, dizzy, sweaty, confused, tired, or unusually angry for no reason, then have a seat and eat a snack - preferably have some snacks sitting around the house that you can easily grab at any time. Carry something with you when you go out.
It might take 15 minutes until you feel better. If you don’t feel better, eat a 2nd snack. You want a blood sugar = 100.
15 grams of Total Carbohydrate should fix it if your 50 or 60.
This nutritional label shows that you need to eat 3 snickers mini pieces in order to have eaten 17 grams of carb.
There aren’t that many LADAs. LADAs are special. Check with the others, but I think that all real life LADAs are genetically traced to this island (The Faroe Islands).
I’m a vegan too for over 35 years and @Marilyn6 is also a vegan . I have been an LADA for 17 years.
What country are you? Sometimes it’s helpful to know and there might be other people from the same country that can help you with the “system”.
But try to get prescribed the Libre. A CGM or FGM is valuable to keep track of all that all over the place. The different countries have different criteria to be able to get one. You might try to find that out. But instead of just knowing your BG level when you test, it will give you a continual reading and it makes deciding what to do easier.
Also the LIbre can be a little or a lot off. So next time you have a 52 or a 194 check your levels with a meter. You will want to have both a meter and a CGM or FGM if you can. You absolutely need a meter and can get one pretty cheap if they haven’t prescribed you one. It the test strips that can cost. But an introductory Contour Next kit, meter, Lancet and a few strips costs around $5-20 in the US.
194 is not that bad…it’s not good for you and you certainly don’t want those numbers a lot. But it’s not horrible when you are in what we call the honeymoon period. I would be more concerned that you are hitting 50’s and 60’s and not already on insulin.
Usually I would say get insulin as fast as possible to control those highs, but those lows are a little more concerning and different. The honeymoon period can last years and it’s when you still make insulin until finally you don’t. But it’s erratic because at different times your body can decide to make some and the next day it won’t? But if you are dropping that means there is still a good supply of insulin sometimes, that’s fine except our bodies in their normal state know to not make too much. I am thinking the Hashimotos is playing a part in this and I don’t know a lot about it except to say I have a sluggish thyroid at times and it is harder to control BG levels then.
Don’t panic, you have been given time to figure it out with LADA.
I have a Libre, that’s were I’ve gotten my numbers from, I don’t have a regular meter, but maybe I should buy one, as you said!
I read somewhere on this forum that in the early stages of LADA, the pancreas gets kind of sluggish, and doesn’t give enough of the first phase insulin, and that’s why it gets high, and then low? So that maybe insulin would help with that, by preventing going too high in the first place, thus not needing more insulin and creating a low? I don’t know for sure if that’s what it is, but it sounded resonable to me.
Most mornings I have around 124, and after breakfast it goes up to 180 or higher, depending on what I eat, and a few hours after that I usually get my first (and sometimes only) low.
Here in Sweden, those numbers mean Pre-diabetic, I don’t know how it is in other countries!
At the beginning we call it the honeymoon phase because you make insulin still, sometimes more and sometimes less. When you are “normal” you make insulin to use as you need it. You have to have insulin to use glucose you make from the food you eat and what your liver makes. As you lose the ability to make insulin you numbers go higher because you are not making enough insulin to deal properly with blood glucose. Taking insulin helps keep the numbers more normal and eventually you have no choice, you have to have insulin to stay alive.
But a “normal” person makes only the amount they need. You don’t drop too low as a “normal.”
I have a feeling you are not really that low? But that is why you need a meter. The Libre can notoriously be off, some sensors will be more accurate than others. A “normal” person can dip into the 60’s. But you need to know so get a meter too.
You can feel jittery and bad because you are used to higher numbers, so the lower but normal numbers affect you only because you aren’t used to it.
I think the theory right now is if you take insulin it might help you keep the ability to make insulin longer which is helpful for control and blood sugar levels.
We don’t really use prediabetic here for type 1. It is used to say the numbers are starting to go bad but it’s caught early and sometimes can be changed so you don’t become diabetic… A type 1 can’t change it, only maybe slow it down.
While I am not LADA and don’t know about Hashimoto’s, I do have a couple of welcoming thoughts:
It’s cool that they immediately gave you a Libre. You can learn a lot from it and, hopefully, they will set you up with that (or other CGM) for the longer term.
As a vegan, you likely understand more about food and what it does than many of us.
Between now and June 2, I expect that you can/will learn a lot. I would suggest trying to learn if eating a high glycemic index breakfast is more likely to produce high glucose levels than eating a low glycemic index breakfast and, secondly, if a high glucose level increases the likelihood of a significant low later. Your Libre data and a few written notes should teach you a lot. Certainly if you find that foods that produce high glucose levels are more likely also to result in a later low, you have learned a lot about how to control this even without added insulin.
Isn’t it interesting that they gave her a libre straight out of the gate?
Its also interesting that she got such rapid and accurate diagnosis.
Good team of MDs! I like them.
I don’t know how long ago you were DXed, but it sounds as if it may have been more recently than me. My guess is that in the world of PPO/HMO/CoPay they don’t have a code for “Orange” … so they can’t give you one.
Of course I always wondered: “Do they just keep oranges in the fridge in case a newly diagnosed diabetic walks in?”
@John_S2 I’ve been an LADA since 2003. But I was misdiagnosed as a type 2 at first. I was literally handed a vial of Lantus by my GP and told to give a shot once a day, start at 10 units and up it 2 units every 2 days until you find the amount that works. I remembered to ask where to give it and do I have to worry about giving myself an air bubble …No warnings, info anything.
When I was started on fast asking I had started going to an internist and I was given the prescription and told to take 1 unit for every 3 carbs and that was it too.
I was DXed in 1972 or 1973 before BGMs or A1C. I can’t remember how they determined doses then … but they didn’t change very often. And I had no tools that would allow me to adjust things myself.
Makes me realize how much better things are today …
