Any 'developing type 1's' around?

My endo calls me a developing type 1. Since my development is not very fast (not on insulin), I assume I am a LADA rather than a type 1. I am on metformin. Anyone in the same situation or has been in the past? Please let me know.

LADA is Type 1, it is just a slower onset form of it. Many of us were misdiagnosed as Type 2 as I was, and I did fine on oral meds for 15 months until my numbers started to rise, I figured out I was Type 1 and I went on insulin.

Thanx Zoe, I know LADA is type 1 or better said: LADA is the slow type 1. 15 months, handy to bear that in mind.

Lots of slow onset Type 1s on this site, including founder Manny Hernandez! You are in good company. I will say my usual line, that multiple studies have shown that starting insulin as soon as possible in Type 1 diabetes preserves the remaining beta cells, thus prolonging the “honeymoon” period, which leads to better health outcomes. Something to consider.

There is a variation in how long it takes LADA’s to become insulin deficient, anywhere from a few months to a few years. But as Melitta says, many people believe in starting insulin sooner rather than later. My numbers began rising at about 14-15 months. I didn’t start insulin until the 19th month mark but by then I was seeing numbers from the 200s to 400s, so should have started sooner. I was just trying to understand what the heck was happening!

Hi Smile… Research past discussions. As Melitta said, there are a bunch of us here, and there has been some talk about not using Metfomin and like drugs as it could possibly cause your beta cells to burn out faster. It seems to be a common protocol for us as they often want to treat us like Type 2’s. Good luck to you.

You might be type 2 if you are just on metformin. Type 2 can, I believe develop into Type 1 over time, but it is a good idea to get the tests done to establish which type you are as this can be very important in deciding how best to treat you. I was diagnosed as type 2 simply on the premis of my age, but tablets did nothing and more tests were done after I went into DKA twice - and after the last one the doctor came in and gave me an earache about not having taken my insulin properly. When I replied that I was type 2 and had only been prescribed tablets, he said no, I was type 1 and I should go straight on insulin.

Type 2 can not develop into type 1. You can however get double diabetes, which is type 2 as well as type 1.

Hi Elaine, I have been searching past discussions, have had advice from Melitta and I know that metformin will not burn out your remaining beta cells. However, I have not read anything about diagnosed type 1’s with only metformin prescribed. I can’t find any clinical trials on this. It is always insulin and metformin.
The stories I read were from misdiagnosed type 1’s, who were diagnosed and treated as type 2. I was first diagnosed as a type 2, after the c-peptide and anti GAD test retyped as type 1. There was no change in treatment (diet and metformin) and I am sent back to the GP for further treatment.

I don’t think the metformin is working because if I don’t stick to my diet, my blood glucose values rise. My BMI is 22 so I don’t have to loose more weight.

I wonder why they are going with drugs vs insulin…maybe easier for them, or they think easier for you? That was the protocol used with me as well even though there was never a question that I was T2, and about 3 months after diagnoses we just went with insulin. It sounds as tho you are a knowledgeable patient and will be able to deal.

You don’t turn from one type to another. Some of us were misdiagnosed as type 2 initially, but that doesn’t mean that our type changed, only that it was wrong to begin with.

Also, some LADA’s do fine on oral meds for a period of time, due to the slower onset. So doing well on orals soon after diagnosis does not necessarily indicate a person is type 2.

Yes, Type 1’s can get insulin resistance, but that doesn’t make them type 2’s, just type 1’s with insulin resistance.

I am still in doubt whether I should ask the GP to send me back to hospital, ask the GP for insulin or just leave the the way it is. For the time being. As long as I stick to my diet, every thing is fine (I test on a regular basis). That was the main reason for opening this topic, to find people in the same situation. I think insulin can be a hassle too. And I am still not looking forward to those needles.

I had the same concern with the needles…I’d bet most of us did, but I never had to use a real syringe needle. I was given a pen type set up using tiny screw on needles. Pretty painless. You can dose the amount you need for each time you eat (I am a snacker and never eat on a schedule, so I was a MMMDI (multiple multiple…daily injection) person. You use a quick acting insulin for your eating doses and a long term to cover your basal needs…both through pens. I think that most LADAs need lesser amounts of insulin and can dose this way, at least initially. Once you are given insulin, you will find so much info here. I am sure you will do well, based on your early interest. AND yes, insulin is not without it’s hassles. Are you not able to go to an endocrinologist? Or see a CDE (Certified Diabetic Instructor?)

T1’s are also put on metformin to treat insulin resistance. Agreed - T2’s don’t go onto develop T1. However, those diagnosed T2 may actually have T1 or LADA.

Hi Smiles -

I am in the “honeymoon” period (or so have been told by others). I was diagnosed in Jan 2011. I am not on any meds or insulin. My endo suggested putting me in a study but too old - 46 years old. The study was -as suggested by others here- to put me on insulin to preserve the pancreas. If I diet and exercise my numbers are great. First A1C was 6.6 then next A1C (believe 3 months later) dropped to 6.0. I am going in tomorrow to do another A1c for my peace of mind. I am afraid of needles - don’t do well with blood draws so would rather eat a difficult diet and exercise then go with meds or insulin. It is all confusing to me. I know of Type 2’s on metformin that keep their levels great so… Good luck. Here is to hoping as much research as we all can find will help. Oh -btw I have lost about 15 lbs and am in the low good range for BMI and the lowest weight I have been since high school.

Type 1.5 (LADA) here. It seems to go by many names. I was diagnosed ~3 years ago at age 39 and initially took Metformin along with strict diet changes (mostly low carb, low inflammatory) to maintain good BG levels.

I found Metformin messed with my digestion, so was striving to find ways to cut back (I started on 1500mg/day).

I worked with an Chinese herbalist (I go to school for Acupcunture/Oriental Medicine) and she worked out an herbal formula that consistently dropped my bg by 10-15 points, which combined with strict diet control allowed me to completely get off of the metformin. In fact it was my Endo’s recommendation to do so. That lasted a good year or so, and then my insulin production dropped some more. I wasn’t able to reign it back in with metformin, herbs and diet, so started with basal insulin. My endo recommended I start with 15 units/day and raise it as needed every few days, but 15 was way too much and I quickly dialed it back down to 6 units a day.

6 units was sooooo close to none that I was sure I could find a way to not need that, but never accomplished it. About 3 months ago my pancreas shifted again and my insulin needs have been steadily increasing since then. I have finally come to admit that my honeymoon is over. It lasted longer than most, but the time has come. I just started mutliple daily injections of bolus insulin, which seems messy (in terms of accuracy) to me, and am in the process of getting a pump. In fact my appt to start that is next week. I am thinking of the Omnipod and a Dexcom 7 CGMS.

On many levels I am disappointed, but on other levels, I’m hoping that the pump will give me better control and also allow me to eat a broader spectrum of food.

I’m new here too, and learning lots!
Welcome aboard :slight_smile:

Chris

Hi Elaine: It is the sulfonylureas (glipizide, for example) that have been shown to speed up the destruction of beta cells in recent-onset Type 1s. Metformin can be a useful drug for Type 1s on insulin who have some insulin resistance, and it doesn’t burn out the remaining beta cells. However, of course, exogenous insulin is the primary therapy for Type 1s.

Yes, Type 1's can get insulin resistance, but that doesn't make them type 2's, just type 1's with insulin resistance.

Try telling that to my blockhead of a doctor. He is just so determined to put me in the T2 pigeonhole. Even after I waved my positive antibody test in his face. Do you know what his reply was? ‘So what if you are antibody positive, it just means you have a mix of Type 1 and Type 2.’

You and I know that this is utter bollocks. He just refuses to admit that he is WRONG!

That would drive me crazy, Lila! I don’t mind a doctor who admits they don’t know much about it (like my current PCP; I’m his only Type 1 patient and he just writes scripts for me). The only endo I’ve ever been to see when I was trying to clarify my type, made the offhand comment that “type 1’s take more insulin than type 2’s.” While I could see a layperson making that incorrect assumption (thinking that we don’t make our own insulin, so would need more, not understanding about Type 2 resistance) but when an endo said that, I lost trust in her. However, when I gave her my list of 5 things that led me to believe I was LADA, she checked each one off and just said, “You are Type 1”. Even though I already knew that, it was validation to hear it and realize I wasn’t crazy.

I think I was thinking that Metformin was a sulfonylurea. They help your pancreas pump out extra insulin? What does Metformin do? I also thought that being insulin resistant was the description of being T2, but others here are saying otherwise. This is why I try not to get into discussions about Diabetes with people who know nothing about it. I know just enough to confuse us all the more.