I’m new to this site and just stumbled across it but wanted to see what everyone’s opinion was about my situation. I’m 23 years old, have been fairly active, not overweight, and while did not maintain the best diet, I certainly was not eating fast food or unhealthy things every. Over the past several months I started noticing some bothersome symptoms, primarily frequent urination at night. As the months went on I began to notice some weight loss, vision changes, and just some generalized fatigue (but nothing that kept me from living my life normally). I ended up seeing my primary care doctor and my blood glucose level was 457 and I had glucose and ketones in my urine. She sent me to the ER in fear that I was in or close to being in DKA. She told me I was type 1 and sent me off. I arrived at the ER and was started on insulin and admitted and stayed 4 nights while they got my levels under control. My A1C was 11.6. They gave me insulin daily and controlled my diet. The first few doctors I saw told me it was type 1 and that I would have to be on insulin (obviously) and this was pretty devastating for me. One doctor then told me he was confident it was type 2, particularly due to my family history. He ended up being the doctor that discharged me and sent me home on metformin 1000mg daily. I followed up with a primary care physician a few days later and he added Glimipride once daily and told me to follow up in a month and check my sugars regularly. Since home I’ve began an all plant based diet and have taken the meds every day. I was still in the upper 100’s and low 200’s when I came home from the hospital but have since had daily averages in the mid to low 100’s and am having consistent readings between 70-100. I was very concerned all along that I was type 1 being what the doctors told me and was really hoping I would actually be type 2 once one doctor suggested that. My concern now is that no one has told me definitively that I am type 2. They did the antibody tests in the ER and told me it would take 2-3 days for results but no one ever gave me those dispute my asking. Since the metformin, glimipride, and diet seem to be working, does that indicate I am in fact type 2? Or could there still be a chance I’m type 1 and if so, is there any way for me to figure that out? I would feel much better if I knew I had type 2 and could feel confident in my ability to take control of it. Thank you!
The results of the antibody test will help determine Type 1 vs 2. If type 1, there can also be a honeymoon stage, where you may produce insulin, in unpredictable way. Eating less carbs will reduce insulin required from your pancreas.
Definitely request the test results, and consider an appointment with an endocrinologist. Unfortunately there are many stories here similar to your case. LADA is another thing to look up. This is basically Type 1, with slow onset, and often misdiagnosed at first.
Type 1, Type 2, LADA, MODY, gestational, type 56 (I don’t think exists), or whatever someone comes up with, who cares. You just need to find a daily regime that works for you including food, medication, and exercise. I have been diabetic for over 30 years, treated at Joslin considered the foremost clinic in the world and all that time and they have still not been able to type me. So I set my blood sugar, TIR (Time in range), and standard deviation goals and then do whatever is necessary to meet or beat my goals.
You will find that good control depends on your goals and commitments to meet those goals. Good diabetic control is mostly a trial and error DIY exercise as we all have somewhat different goals and ambitions. This forum will give you all the support you need to help you meet your goals.
Your lifestyle will need some modifications but in time, taking baby steps to tweak your regime, you will find that you can lead a totally healthy, enjoyable life.
I have honed my daily routine of how often and how much insulin I take based on my CGM and previously finger sticks combined with my planned exercise and carbohydrate intake management to achieve my goals.
None of us can help you with what type you are. All we can do at this point is be supportive. The typing is gonna lay purely with the antibody tests. (It sure sounds like Type 1/LADA, though!) The beginning days of Type 1, while you’re still able to make some insulin, can look very similar to Type 2 and even respond to the same medications. The Metformin and Glimipride both basically tells your body to make more insulin, and you can still do that in these early days, no matter the type.
If it is Type 1, you’ll slowly lose the ability to make any of your own insulin, and those drugs will fail to work anymore. There’s also new research that suggests starting insulin early can help preserve your existing beta cells, so it behooves you to get those lab results and take action. Maybe even check to see if there’s any clinical trials in your area for the newly diagnosed. Most of the “cure” work being done focuses on either preventing it in the first place or preserving/restoring beta cell function during the early days.
What I really wanted to say is that while this might be shocking right now, this is a great time to be diagnosed with diabetes! These are really exciting times for medical research and advancements. The technology is evolving so quickly, and it’s truly astounding. We’ve come a long way.
It’s not a death sentence anymore. It doesn’t have to limit a single factor of your life anymore. Statistically speaking, type 1s are even outliving our non-diabetic counterparts now! It’s a lot to take in, and it’s going to feel overwhelming at first… But you’ve got this. You’re going to do great!
Welcome to the group. I am sorry about the diagnosis but this is the best place to be. I do agree find an endocrinologist, get antibody testing . I am a thinker that knowing our lab work gives us power to take care of ourselves. I am a type 2 of 30 years. Nancy50
Good answer but Metformin does not stimulate the secretion of insulin. It Reduces the amount of glucose from the liver, increases insulin sensitivity a bit and slows a bit the movement of food in the digestive system. This is the reason why Metformin doesn’t cause hypoglycemia.
As the this young person, I think that he should have been tested for all 5 autoimmune markers.
Hi, @brandonlach, It is possible that the first doctors gave a correct diagnosis of type 1, considering your age and symptoms. I would hope that the first or last doctor did these 5 antibody tests - * Islet Cell Cytoplasmic Autoantibodies (ICA)
Glutamic Acid Decarboxylase Autoantibodies (GADA)
Insulinoma-Associated-2 Autoantibodies (IA-2A)
Insulin Autoantibodies (IAA)
Zinc Transporter-8 Autoantibodies (ZnT8A)
Without tesing I don’t see how a diagnosis can be accurate. Type 1 DM is usually an autoimmune disease, but there are a very few who lose the ability to secrete insulin without any know antibody markers.
Anyway, keep a close watch of your fasting, and 1 hour after eating BG numbers. Keep a log of what you eat, especially grams of carbohydrates and blood glucose numbers.
All of us here are in the same boat. Some of us are type 1 or LADA, some type 2 and I believe some have pancreatic diabetes (type 3c). There are other subtypes such as MODI. And then there are the parents and family members of diabetics.
Hi! You need to have the antibody tests done and should get a C-peptide test done too. If they were already done, it’s possible since you have not been able to get the test result that if you ask for your medical records from the hospital as you need them for a new doctor, you might get them that way. (one year is usually free). If they were actually even done. Or get new tests.
The antibody test if positive is a sign of type 1, some type 1’s still test negative but stop making insulin and they don’t know why. A C-peptide tells you how much insulin your body is making. High or high normal is a sign of type 2 as a type 2 still makes insulin, they just don’t utilize it well and your pancreas produces extra to try to make up for it. Low or low normal is a sign of type 1 as you are losing the ability to make insulin.
The younger you are type 1 has a tendency to happen pretty quickly, But it’s not always the case and it’s very possible you have LADA/type 1 which is slow onset.That could mean months or years before you slowly completely lose the ability to stop making insulin. Change of diet and medications work at first because you still make some insulin.
Doctors still love to misdiagnose type 1’s, 35% of type 1’s are misdiagnosed as a type 2 at first. Given that you are younger, active and ended up hospitalized to be able to control your BG levels are all signs of it being a type 1 versus a type 2.
It does make a difference to know what you are. For insurance purposes being a type 1 will make it easier to get things like a CGM, insulin pump etc, all things that can make our life easier.
I was misdiagnosed as a type 2 for many years, treatment and self care are better when you know what you are dealing with. I used to think my body could deal with skipping insulin sometimes or if I exercised more or weight loss it would help. Little did I know that when I ate that huge salad and my BG level shot up that nothing was going to help it but insulin.
I’m not saying you are a type 1, I don’t know. But there is enough there to say you could be and need the tests to tell you. Here is a list of the recommended tests.
C-Peptide
While most tests check for antibodies, this test measures how much C-peptide is in a person’s blood. Peptide levels typically mirror insulin levels in the body. Low levels of C-peptide and insulin can point to T1D.
Insulin Autoantibodies (IAA)
This tests looks for the antibodies targeting insulin.
Insulinoma-Associated-2 Autoantibodies (IA-2A)
This test looks for antibodies mounted against a specific enzyme in beta cells. Both the IA-2A and GADA tests are common T1D antibody tests.
Zinc Transporter 8 (ZnT8Ab)
This test looks at antibodies targeting an enzyme that is specific to beta cells.
Islet Cell Cytoplasmic Autoantibodies (ICA)
Islet cells are clusters of cells in the pancreas that produce hormones, including insulin. This test identifies a type of islet cell antibodies present in up to 80 percent of people with T1D.
Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)
This test looks for antibodies built against a specific enzyme in the insulin-producing pancreatic beta cells.
Visit a Diabetologist. You might be a type 1 or 2 but regardless you need a specialist. If you are on the cusp they can figure it out and if clear cut they will know that. Regardless you deserve specialized care.
Its important that you advocate for yourself. Call them and get the results. If they will not provide the results, then you need to schedule with a new Doc and have the test(s) performed again.
Its possible that the test results got stuck in the mail. But they should know the results.
As a diabetic (either T1 or T2) you will need to ensure that business gets done. Things will fall through the cracks in heath care all the time. It’s your butt on the line, so you will need to be the manager and make sure that things ACTUALLY get done. That’s a lot of work, but its important. YOU are what’s at stake and you are important.
This is not a great time for diagnosis because the whole system is a little out of order and broken because of covid.
I would contact the lab directly. You should be getting lab results electronically.
Your doctor should get them first.
You can’t depend on ER doctors. They don’t follow up.
You need to get an endo or internist who can either get the tests or order new ones and who will go over the results with you.
That being said, Type 2 s rarely go into DKA. That’s more of a type 1 thing.
I was diagnosed at 21, I had a urgent care doc tell me to wait and see, the next day I was admitted to the hospital and diagnosed with type1.
No antibody testing was available at that time. But I was very underweight
I went on insulin and I felt 100x better in the morning.
I’m not sure if they still make determinations based on weight and age.
You are real young for type 2, but it happens.
Remember in type 1 your pancreas doesn’t give up all at once.
The meds might buy you time. The low carb diet can also buy you time. It doesn’t mean anything.
Some type 1 have a honeymoon period where their sugars return to normal for a short time until their pancreas gives up the ghost.
Glimipride is in the sulfonylurea class of drugs, and it is contraindicated for people with Type 1 diabetes–it stimulates the remnant beta cells of the pancreas and causes them to burn out more rapidly. IMO, you sound like textbook Type 1/LADA. Do you have a follow-up appointment where you can ask questions/get clarity? Getting a correct diagnosis is so important!
I can only relate my experience of almost 50 years ago (age 19) which was similar, but a bit more mysterious, to yours. Elevated sugar was detected in a prospective employer’s physical but I had no symptoms of any kind. No known family history. I went to the family doctor, got the glucose tolerance test, and was told that I was probably Type 2. I barely knew what diabetes was, let alone types. I started oral meds which were changed 2-3 times during the next 5 years.
Long story short: By age 24 I was full fledged Type 1 with a hospital stay similar to yours. The adventure continues, with a few setbacks along the way, but I have always been active and still in good health. Unfortunately had to give up marathons at age 55 over a knee problem.
You can do this, Brandon, whatever the years may bring.
Your information about sulfonylurea drugs jogged my memory, and I now remember my first oral med (1970’s) for suspected Type 2 was Diabines. I never have been told about the effects you describe. Do you have a recommendation for where to read more about this?
Hi @Dave1, a recent article Adult-Onset Type 1 Diabetes: Current Understanding and Challenges states, “It is generally agreed that sulfonylureas should be avoided because of the potential to hasten beta cell failure.” The origin study was out of Japan, by LADA researchers (Kobayashi et al) who found that people with LADA who were treated with sulfonylureas experienced rapid beta cell destruction. And of course keeping remnant beta cells going as long as possible is so much better for our health.
I’m sure that’s true for over all health.
But as for control it’s not always that clear.
I had rapid onset type 1 at 21 years old but I still had beta cells for a year or more.
It was much harder to get control while my pancreas was still making insulin. I would have reactive hypoglycemia at night.
Mostly it was a roller coaster until my pancreas finally gave up the ghost.
Then I was able to get some reasonable time in range.
Back then I didn’t have a pump and I was only finger testing twice a day. Maybe with a looped pump, it would have been different.
