How will my life change if I’m really a type 1.5?

Type 1 and LADA
1

Hi all,

I confused and a little nervous.

I was diagnosed with GD 16 years ago, and then again with my last pregnancy 14 years ago. My HBA1C was 6.4 in 2012 (although my fasting BS has been elevated since 2008).

I’ve been on oral medications for a few years, (Metformin, Januvia, Glimepiride, and Jardiance, not all at once) with no great success. 3 months ago my endocrinologist put me on Trulicity, and despite getting all the side effects, my blood sugars weren’t greatly improved. I’ve been prescribed Xultophy, but it has not been approved yet.

Meanwhile, I spoke to my diabetes nurse on Friday regarding the denial of the Xultophy and asked if there’s any chance I’ve been misdiagnosed as a type 2. She asked if I’ve ever had my antibodies checked and I said no (because I didn’t ever remember that being discussed, certainly not with my endocrinologist), and she said she’d speak to the doctor.

When she got back to me, she told me something very surprising: I tested positive back in 2006! :flushed: and my doctor wa surprised too (it must have been a test ordered by the GP for some reason because I wasn’t even seeing an endocrinologist back then) and is having me take another blood test to recheck.

Because blood tests are digital, I have access to all of the old tests and looked it up myself: I had a GAD-AB of 3.8 (according to the test values, normal is between 0-1).

Obviously I will be retesting. But what does this all mean? How will my life change with a different diagnosis? Also, from what I read about LADA, patients require insulin within a max of 6 years. However this was 12 years ago?

Feeling confused. And nervous. I’d love to hear people’s thoughts,

2

Everyone is different. If your diagnosis is changed to LADA then you will probably be put on insulin immediately and taken off of most if not all of the type 2 drugs. You will have to test your BG very frequently or request a continuous glucose monitor. You’ll need to learn how to dose insulin for things like high BG corrections and carbohydrates, protein, etc.

If the type 2 drugs didn’t work then you probably do have LADA and even if you don’t still have positive anti-body tests that doesn’t mean that you are type 2. To me good BG control is important no matter what type of diabetes you have and that may mean that insulin is your best option no matter what type you are. Hope you get some definitive answers soon!

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3

Will your life change? Yeah, a little. Yes, insulin will be a must, most of the type 2meds and all the side effects will probably go away (although some of us type 1’s use some type 2meds) and you will become a major scientific experiment everyday as you learn the ins and outs to insulin and how different foods affect your blood sugars.
I have heard more times than not that when people finally start insulin, they feel so much better and are sorry they waited so long to make the change.
So sorry it took our medical team to figure this out. But now you know and can move on with your life. Keep asking questions and remember there is no bad number, just knowledge from every number.

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4

@Leah10 as @Sally7 and @Firenza pointed out, you will most likely make a transition to insulin. Your current drugs my be included for a short time until you transition to a basal/bolus insulin combo.

On the brighter side, getting drugs and equipment approved just got much much easier.

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5

It took me 14 years before I was correctly diagnosed as LADA (at which point I started Lantus, later Tresiba), and another 4 years before I added Afrezza as a bolus insulin. So different folks proceed at different rates. Finally adding a CGM (Dexcom) was incredibly helpful to make the best use of the insulin.

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I think the most important thing to keep in mind is that the big picture of your life will not change one bit. When I was diagnosed with LADA 2.5 years ago not much really changed for me. I kept up with my hobbies and lifestyle. I kept traveling a lot. I got married. My life didn’t really change. If anything, I know a hell of a lot more now about how my body works than I did before. You will become an expert in you and your body chemistry, which is a good thing.

Like others have said, I would also highly recommend a continuous glucose monitor (CGM), but only when you’re ready for it. It’s a lot to take in all at once. So don’t rush in lest it all overwhelms you.

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7

Thank you all for your replies. The new medication I’m waiting for is a daily injectable, containing insulin degludec, 100 units/mL, and liraglutide, 3.6 mg/mL. If I understand correctly, that’s the same insulin as Tresiba.
What’s the difference between Lantus and Tresiba?
Also, I use a Freestyle Libre, although not all of the time. It’s quite pricey out of pocket, although if my diagnosis changes I believe it gets covered by insurance with no copay at all. Will the insulin cause hypos?

8

Yep, but close monitoring and careful dosaging will reduce the frequency and severity of hypos. Although, fast acting insulins are more likely to cause hypos than long acting insulins once basal dose is properly adjusted. I take Tresiba and I took Lantus for 15 years and I much prefer Tresiba, far fewer lows and much more stable fasting numbers.

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@Leah10
Of of the most read threads on this site is about Tresiba. It would take a long time to read through it. However if you were to do so, I would imagine it would be quite informative.

https://forum.tudiabetes.org/t/tresiba-basal-insulin/

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10

Hi Leah: One thing I would suggest is getting Type 1 training/education. I think for people that go misdiagnosed for a long time, one of the hardest things to wrap their heads around is that you actually have Type 1 and that entails different care than Type 2. Good education from an excellent CDE (certified diabetes educator) can help with that. Also, as others have said, getting on insulin really is helpful in so many ways, and of course is the correct treatment for Type 1 diabetes. Finally, I was just at a Type 1 conference, and Dr. Steve Edelman (founder of TCOYD–Taking Control of Your Diabetes) remarked on the superiority of Tresiba versus Lantus.

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11

Type 1 ruined my life, nearly killed me. I got to the point of Dka and serious complications before I was diagnosed. I’ve had two more near dka situations, which happens easily for me in heat, dehydration/ illness and any insulin problems. I can’t even go for a walk without worrying etc.

You should start insulin before you get to the point of dka, and or you have complications from the type 2 meds. Don’t let this happen to you. Your response to insulin will hopefully be more stable while you still have some beta cell function so it will be easier and you will hopefully have a more normal life.

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12

You’re lucky to have found our without going DKA. Getting the right diagnosis is a big benefit, as your treatment will now be appropriate for your condition. I was dx’d as T2 at age 57, then rediagnosed as T1/LADA two years later, after I asked for the antibody tests. Insulin was a big improvement over metformin, as insulin helped my energy levels whereas metformin interfered with them. My A1Cs also improved, and my diet is now more flexible.

Getting good information on LADA is difficult. The calculations for I:C ratio assumes no pancreatic insulin, for example. My endo left me with the strategy of “guess, then test a lot to see if it works”. Also, what do they mean when they say “6 years to requiring insulin”? Is that from onset (usually not really known), or from diagnosis (so did your clock really start running 12 years ago, or not). Also, there is a big difference between “requiring insulin” and “not producing measurable insulin”. Figuring out how much of your insulin needs your body still produces would be very useful, and then monitoring it as it changes (i.e. get worse) over the years. In my case, I take about 7U/day (mostly Lantus) vs roughly the expected 45U for someone of my 75kg mass, so I am expecting a long “honeymoon” period before my pancreas finally gives out.

I am surprised that you are being prescribed liraglutide, instead of a second fast-acting insulin for boluses (to complement the Tresiba for basal). The medlineplus.gov website states that liraglutide is for T2 diabetes and not for T1. Since LADAs still produce insulin, it could work, but will it be found to have the same problems that sulfanylureas had with causing the pancreas (in LADAs) to fail sooner?

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13

I’m sorry, but that’s not exactly a helpful statement, nor is it something a newly diagnosed individual needs or wants to hear. Let’s try and be encouraging here.

14

Great advice all around. I’ve given up on trying to calculate my insulin to carb ratio because of the complication of trying to account for endogenous insulin. But that means a lot of time it’s guesswork when it comes to taking meantime insulin. I often only need 3 or 4 units, so the difference is usually minimal. Regardless, the point is that there will be a lot of guesswork involved in your diabetes education. Don’t worry. Diabetes can rarely be broken down into formulas that work as expected.

I also agree with the other people who say Tresiba is preferable to Lantus. I started on Lantus but switched to Tresiba and found that it kept my numbers more stable. With Lantus my blood glucose was always on a downward slope, trending towards hypoglycemia. With Tresiba that line flattened out and the hypos were drastically reduced. It means I don’t have to worry about going low if I wait longer between meals, or if I have a very low carb day. With Lantus I kept needing to snack throughout the day to keep my from going low. I don’t have that problem with Tresiba. Anyways, it’s just one more thing to ask your doctor about.

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15

Not your biz to tell me how to respond really is it? I’m telling the truth about my experience, she may have a totally different experience. I’m not going to lie to make you or others feel better.

16

That’s a great thread! Thanks for the link

17

Thanks for your reply. I have a blood test scheduled for tomorrow morning, and my diabetes nurse said it takes a few weeks to get the antibody results. So meanwhile I’m still classified a T2 until proven otherwise.
Because I’m overweight, my doctor liked the combo in the Xultophy because it’s “weight neutral” (apparently the insulin causes weight gain and the liraglutide is supposed to cause weight loss). I don’t know, I’m a little disappointed that o feel I really have to be on top of my condition instead of blindly trusting the endocrinologist / GP. I’m very far from being medically oriented.

18

What is the selection of antibody tests which will be run?

19

Seems that that’s one of the main benefits of Tresiba vs Lantus: more stability and less fluctuations. All of this trial and error is disheartening though, I feel like a guinea pig :neutral_face:
With all of the technical advances it would seem that there would be some kind of blood test that would definitively say which medications work for each individual!
Since stopping my Amaryl (Glimepiride) nearly a year ago, I haven’t had too many lows. Except on the first week of the Trulicity. Curious to see what my blood tests will tell. Meanwhile trying to psych myself up to put in a new Libre :smiley:

20

Wow sounds like you went through a very rough time until you got things sorted out. I too hope that my doctor and I will find the right combination to manage my condition.
Hope you’re doing well now!

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