So, I was diagnosed with LADA/Type 1 about 3 weeks ago. I got a CGM to wear for 2 weeks. My diabetes nurse send the graph to a doctor/endo (not quite sure, but I’m guessing she’s an Endo, since she works with diabetes and other hormonal stuff…). The doctor said my numbers were fine, and that I can start Januvia in three months. I told my nurse that I didn’t really feel good about just letting the disease go on without treatment, and she said we could wait one month, just to see if my gs changes.
These last 5 days, my fasting bg has been higher than usual. The overall numbers are higher. Not super high. Just higher. I also get what I think is reactive hypoglycemia some times, mostly after breakfast. I told my nurse and she said she would speak to the doctor and see if I could start Januvia right away, or if there’s anything else I can do.
What I’m wondering now is, are there any other Type 1s or LADAs out here who tried Januvia? I’ve read so much different about it. Some say it’s absolute ■■■■ that will only make everything worse, some say it didn’t have any effect at all, and some say it works okay.
I’m really not feeling good about Januvia as of now, and I’m kind of scared to start taking it.
From Mayo Clinic:
Latent autoimmune diabetes in adults (LADA) is a slow-progressing form of autoimmune diabetes. Like the autoimmune disease type 1 diabetes, LADA occurs because your pancreas stops producing adequate insulin, most likely from some “insult” that slowly damages the insulin-producing cells in the pancreas. But unlike type 1 diabetes, with LADA, you often won’t need insulin for several months up to years after you’ve been diagnosed. Hope this helps. Sorry you got to join this group. Good luck! I am a type 2, 28 years. Nancy50
Hi! I was misdiagnosed for years and they tried I think just about every drug on me and my numbers just kept getting worse. Every drug also made me sick in some way. But that could be because at the time I needed insulin. Plus I react badly to about 50% of any medication given to me.
Januvia worked some, I think it brought my fasting glucose down about 50 points. But it gave me a weird almost headachy feeling and I ended up with terrible leg cramps. The leg cramps did not go away for about 6 months after I stopped the Januvia and I was only on it somewhere 6-8 months?
But I do have to say once I was on both fast acting and long lasting insulin my new endo, who was also a type 1, and is the one that properly diagnosed me, said I could take Januvia if I wanted to, that she prescribed it for type 1’s. But when I said it had made me sick, she said it had made her sick too.
So the thing is type 1’s can take Januvia. But it can’t replace insulin. As a LADA you make insulin for a while, years a lot of the time, just less and less, which is also why so many are misdiagnosed. So people can forestall the need for insulin by diet and drugs, but for how long before you have to have insulin? Before you can’t control BG levels? And should you is now the question? Some believe the sooner you go on insulin the better and eventually you need it anyway.
My fasting numbers just kept going higher without insulin. The drug(s) would make an initial adjustment and then it would slowly increase.
Might want to consider Jardiance. I’m T1, so it’s “off label,” but I started taking it about 8 months back and I find it helps reduce my TDD (Total Daily Dose) of insulin, attenuates post-prandial spikes and has allowed me to drop my A1C under 6.0 for the first time since I was dx’d in 1983. I haven’t experienced any side effects, either.
That’s what I’ve heard. My Fasting c-peptide was 0.19 nmol/l, which doesn’t really say me much, but my nurse said that it’s really low, that’s why she said she thought the doctor would give me meal time insulin. But I guess the doctor had other things in mind.
I’ve just read a lot about people saying they have muuuuch better control over their bg with insulin, and I’m craving control right now I feel so out of wack and like I don’t have any control at all, over anything.
When is your next appointment with the actual Dr. ? If it’s within the next couple of weeks then you could take the Januvia until then and talk with your Dr. about transitioning to insulin. While most Dr.s act like the way they are treating you is the only way if YOU feel better about starting insulin rather than a non-insulin drug then you can and should insist on it.
You have to learn to make your wants and needs clear when you are diagnosed with diabetes or you will not get the kind of control or treatment you want. BTW if your BG’s start going very high or you start producing ketones then please contact your Dr. immediately and if your Dr. does not respond promptly then go to an emergency room. Diabetic ketone-acidosis (DKA) is life threatening and cannot be ignored for any length of time.
Is the Libre you are getting from the nurse, is it one you get to look at all the time or the other one where it is only read at the doctors office? I am just wondering because you are going to the nurse to get a new one and what that means.
If you can afford it you can self fund a Libre that you can read 24/7. You need an idea of what your blood sugars are actually doing. Do you spike high after eating but come down within a couple of hours after eating? Because if you come down you are still probably making enough insulin. So you need to know how high you are staying for how long etc.
I believe you said you have 190 bg which is high enough for insulin. As I said before I would really push for insulin, you are going to be on it anyway so why not get used to it and start when you have a chance to maybe preserve some beta cell function. .19 is very low, you need insulin.
Using a type 2 med in addition to insulin to help control is not the same as as treating type 1 with only a type 2 med.
This is unfortunately the beginning of a lifelong chronic condition that you are going to have to manage mostly yourself and you have to advocate for your best treatments.
How high are your BG’s going? If you are regularly running over 140 in the morning then IMO that would be reason to start on a small dose of long acting insulin. If you are spiking above 200 after meals and staying up above 140 for a significant amount of time (say 3 hours or so) then that would be reason to use meal time insulin. Do you know what your most recent A1C is? Has it been steadily rising?
Like most of the other commenters have said you are going to be on insulin eventually. It might be easier to start on it now since you still have a little bit of endogenous insulin production left, kind of like training wheels, any mistakes you make now will not be as severe since your doses will likely be small and if you don’t give enough there is that safety net still there.
Do you have ketone strips? You can pick them up from any pharmacy over the counter very cheaply. If your BG is high wait a few hours and then check ketones (as the strips measure urine which takes several hours to show an effect if you are producing ketones). You can also purchase a blood ketone meter and strips although they can be pricey. They are up to the minute though and more accurate than the urine ones.
It’s very different from day to day. Some days I spike (mostly after breakfast), and fall down in to almost hypoglycemia (though not this last week).
A few days last week my fbg was 154.8 - 165.6, and on those days it wouldn’t come down below 126 even once.
But these last two days my fbg has been 111, going down to 91.8 sometimes during the day…
The highest it’s been is 225, but usually it spikes that high right after breakfast, and falls down like 30 min after eating, down to 63. (although, as I said before, this has not happened this last week).
I had a few days where it was over 150 in the mornings, but now it’s down again to 111-ish. After meals I usually don’t go any higher than 180, but it can stay above 140 for the rest of the day sometimes. Not all days, though. Some days, as I said in an earlier comment, I can go down to 80-90 in between meals. Though, this does not happen as frequently as it did 3 weeks ago, when it happened every day. Now, it’s like maybe once a week or so.
It’s usually high in the morning, all the way to like 2pm, and then in the evening it’s pretty much normal. If I’m not eating candy or something in the evening, than it will go up to 200-ish, but it always comes down before I fall asleep.
And then around 2-4 am it starts spiking.
I don’t have any ketone strips, but since my sugar isn’t that super high yet, I didn’t think I need it?
I would ask for meal time insulin in that case for those days when your pancreas just isn’t keeping up and to treat the dawn phenomenon. Your beta cells are still somewhat active but it appears to be starting to sputter and then overdoing it when it does kick in.
The ketone strips are for keeping an eye on things when your BG’s are not cooperating. They are a good tool in your toolbox especially for new diabetics. The signs to look out for are nausea, thirst, fatigue, frequent urination and sudden weight loss. You can develop DKA even without high BG if your body is no longer producing enough insulin. Some type 2 drugs also can send you into DKA without anything being wrong so you should have them if you do decide to try out the Januvia.
Thank you (everyone) for your answers!
I will go see my nurse on Monday, and will tell her my concerns about Januvia, and that I would rather start on insulin, if that’s possible. I’m hoping they just opted for Januvia because many people don’t want to take insulin, and I really don’t know why I’d rather do that than take a pill, but that’s how I feel.
Hoping to get some answers out of her as well, just in general. I was diagnosed almost 4 weeks ago, and everything is still very unclear.
It can be very erratic during what we call the Honeymoon phase. The problem will become you will start to stay higher for longer. Plus you will start to see higher and higher numbers.
Unfortunately a lot of diabetics find out the hard way about DKA by getting it. DKA really isn’t about high numbers, it’s about not having enough insulin. So there have been a few people that haven’t been that bad with really high numbers and started getting ketones, that is rarer, and others like I was, that could have very high numbers and never got sick.
So it’s best to know the symptoms and get help immediately if it happens. You never know especially with the circumstances we are going through right now that something might cause your blood sugars to rise like getting sick, which can put you at risk. This is also one reason it could be good to learn small insulin usage so you are familiar when you need it.
Once you do start using insulin though make sure you always carry a hypo treatment. But a very tiny dose might help offset those days you are staying higher all day.
As @Marie20 mentioned keeping fast acting forms of sugar around after you start taking any kind of medication for diabetes is very important.
I keep low treatment supplies in the car, on my bedside table, kitchen, purse and in my work jackets.
I use a diabetes app called one drop to keep track of medications, BG’s exercise and sometimes food (they have extensive databases so you can carb count easier). There are several apps out there like this and they have really helped me in the last couple of years since I started using them.
Otherwise all of the other things I can think of right now are more lifestyle changes rather than supplies. Journaling at least in the short term may help you keep track of how you are feeling and what you would like to speak with your medical providers about as well as process this diagnosis.