Life with Type 1.5/LADA: How it all started

Close to 10% of patients diagnosed with Type 2 diabetes are actually living with Latent Autoimmune Diabetes in Adults (LADA or Type 1.5): in the US alone this represents almost 2 million people. I am one of those people and this is my story.

I can’t believe I can’t get rid of this yeast infection, what’s going on. I tried over the counter medication to cure it, the yeast infection never went away. I called my Doctor’s office and made an appointment. Judy walked in the room and I told her I had a yeast infection I couldn’t get rid of. She checked my glucose levels and the meter read 400. She said I have diabetes and my glucose levels are high that’s why I couldn’t fight the infection. On June 16, 2004 I was diagnosed with being a diabetic; I was only 23 years old. Judy decided to send me to the lab. The next morning I received the results, fasting blood sugar was 334 and my HgA1C was 14.5. Judy (my nurse) diagnosed me as having Type 2 diabetes. I was initially started on Metformin, which at first worked well to control my blood sugars. Eventually, she decided to send me to a Endo, because my C-peptide levels were low, indicating that I was not making insulin on my own, which is uncommon in patients with Type 2. Also, I wasn’t overweight, a more common aspect of type 2 diabetes.

My first visit with Dr. Menon (my Endo) went well. He said he knew I was Type 1.5/LADA, just by looking at me. But, in order for him to confirm his theory, I had to get some blood work done. This was to measure antibodies that are frequently present in Type 1.5/LADA, called GAD-65 (there is also a test called islet-cell antibodies, which can be measured). A week later the results came back, it was confirmed that I have Type 1.5/LADA. My first thought was how did I get this? I don’t have a family member with Diabetes. Dr. Menon said, “It is a gene that you have and it could have been triggered by a cold or maybe even stress."

Dr. Menon started me on 5mg of Glipizide and said I would have to be placed on insulin within the next 4 years. He couldn’t tell me when my pancreas would completely stop making insulin. That was 4 years ago…

A lot of things have changed since my initial diagnoses! In January of 2008 I was placed on insulin, my honeymoon ended. I am learning how to live as a Type 1. I know some people say there isn’t a difference but to me there is a huge difference!!! I had the chance to live on both side of the tracks. If you asked me pills over insulin, I would choose insulin. I was asked if I would rather have Type 1 and 2 over Type 1.5, wouldn’t trade being Type 1.5/ LADA for the world. I like being the odd ball!

Here are a few Characteristic’s of Type 1.5/LADA:

-Adult age diagnoses

  • Lean body type.

  • More abrupt onset of high blood sugars, at the time of diagnosis, perhaps even DKA.

-Less likely to achieve good blood sugar control with meal planning or oral diabetes medications.

-Positive antibodies against GAD-65 or islet cells.

-Low C-peptide levels – insulin deficiency versus the insulin resistance that is routinely seen in type 2 diabetes.

  • Less likely to have a family history of type 2

If you think you have any of the symptoms listed above talk to your health care provider and share your story here too.

In many ways it mirors my personal exeperience…

Ancient history first though…

When I was 14, in the hospital, possable apendicitis (ruled out) and back to normal in a few days. One person there at the hospital told me I would end op taking shots every day…well I DID NOT.

The next year I came down with hepatitis and while everyone else in the family got it as well, they were home for 2 weeks and then back to work/school. Me I was in the hospital for 5 weeks and a human pin cuosion, then home for 2 weeks more before going back to school (9th grade). I was watched over like a hawk and told to go straight to the office if I did not feel well.

Fast forward to NAVY boot camp and had to be admited 3 times in a row for a URI was not getting over as fast as normal. THen while in ‘A’ school I got GOMERed (kicked out of the the sick bay Drs office for 10 days. Then the doc saw me outside his door and marched me down to X-ray, saying I gonna PROVE there is nothing wrong with you", then called an ambulance, and off to the hospital where I was seveved Captains-Mast papers for failure to seek medical treatment. I got ver the pneumonia and back to school in about 3 weeks. Poor medical care was one of my official reasons (in a magazine interview) for leaving the Navy…

Fastforward a decade and again… I got a sore throat, my family doc refused (GOMERed again) to see me for follow-up when I was still not feeling well, in fact even worse. I knew something was wrong, so did my sife and mother-in-law, even my boss at work. He asked if I would see a company doc. That morning I felt better than in weeks, had to go in fasting. Went back to work just in time for lunch, went home and had dinner. The wife and I sat downt o watch TV and shared a Coke. After drinking just 2oz (aprox) I was a mess and my wife called an ambulance. My eyes were burnning like matches in the backs and OX level was low, so they put me on the cardiac ward.

A day or two later the Co doc came in and said “what the hell is you BS doing so high?” He shoved a ADA diet sheet in my face and I had no idea what he was talking about. I sought help from a relative who was a nurse… I moved, changed jobs etc and to make a long story short had cancer surgery. My new family doc said my diabetes was worse than he thought. I was farmed out to several otehr docs, an oncologist ov course and another who took charge of getting me educated diabetes wise, and of course started insulin.

Diet and exercise did not work, a pill I took for a very short time made me less stable and quit working in short order. I have had to manage my diabetes more like a type-1, even though I was not young enough to be a t-1 or old enough to be type-2. Docs seldom seemed to UNDERSTAND MY diabetes over the years. My records have listed me as type-2, Insulin dependent diabetes and everything excpet type-1 (or any of the other flavors such as LADA or MODY etc.

Long ago I figured I had SOME insulin ability but not enough, just from trying to manage as best I could with some help with a doc that gave a rats behind once in a while. Last year I was sent to the local Diabetes center, aka a dumping ground for patients GPs don’t want to manage. There the doc just looked at me and said TYPE-2, but did change my insulins from N & R to Lantus and Humalog. He set my Lantus way too high and humalog to low. I elarned from a pumper how to calculate my BASAL and BOLUS rates, even correction factor and its been the best BS management ever.

TESTS, NO, the DC doc said the C-peptide test would not be valid unless I let my BS rise to over 300, not a good idea since I was still, (am still) trying to recover somewhat from another case of mild DKA.

Bottom line is, i have always been an odd diabetic, still am and have many complications from poor control/management, not to mention not being well understood by almost all my doctors over the decades.

Am I a T-1, T-2, t-1/5 LADA, or something else, who knows?

(&( GOMER, a peigeon without a hole…


You have been through a lot…I can not believe your Dr will not send you for a c-peptied test unless your bg’s are over 300…what kind of Dr is that??? can you go to another DR or see an ENDO. If your Dr want to a c-peptide would he do a GAD 65 test??? I have a lot of questions…lol

I put it this way, I have been through a lot of HELLS…

BTW this doc, the first one I saw at teh diabetes center I believe IS an ENDO!

Me and docs in general do not get along all that great, Do this and do that and if it don’t work, its all MY FAULT, not mater how hard I tried. Even when I first landed in the horsepital the first time FOR diabetes, the Co doc assUme’D I KNEW I was diabetic. I have experienced almost every extreeme to some degree except a diabetic coma from DKA. Most of what I know even today I ahve learned through the road of hard knocks…

There have been a couple brighter spots (care realted) such as when I dragged into a docs office and she looked at me and sai, you really don’t feel good do you…DAH! Another time was when all of a sudden my BS was going too high at night. The doc added an evening dose of insulin and added regular to my NPH. Then everything flipped on me and I started going high one morning before lunch and ahd to add some regular to my morning NPH.

There are some things that really TIC me OFF…Go in complain about something feet back ache whatever and get the GOMER treatment. One doc even apollogized later when he found I had an infection, saying he gets scores of patients the complain about their back and NOTHING is wrong with them…well I am NOT THEM. They assUme when thing don’t go well YOU (the patient) are not following orders, yet THEY don’t bother doing routine things like checking FEET every visit, unless only once in a blue moon visits count.

When I started this road there was no internet, little information avaialable and to be fair even the medical profeession knew little, compared to today. One doc even ignored surgar in my urine…doing me a favor so I would not ahve to DEAL with it. I told my current priamary I am a product of what MY personal experience has been, including dealing with doctors.

I have cought my PCP doc telling me my BP was 110/xx AFTER the nurse had already mumbled earlier it was 148/xx. Same at teh Diabetes Center, it’s always 110 over something. Yet I go to an eye doc, my nephrologist, drug store or home tester I almost enver get NOMAL reading and never the same over and over again ether.

Now I always get copies of my labs so I KNOW what the heck is going on…My current PCP (Dr FlipFlop) back about Jan wrote good kidney function on a copy of my labs, I pointed out that my kidney function was dropping etc. I even cut-n-pasted info from the web and MADE it a topic of my upcomming OV. Then eh ended up sending me to a nephrologist (KIDNEY) doc who then read me the RIOT ACT (about it)…go figure.

Doc seem to tend to do the minimum accepted practice, the easy way out as far as diabetes management. I have TAKEN CHARGE and EDUCATED msyself, almost in spite of them…BUT they do not complain, in fact I ended up getting compliments about it and how I have done a lot on my own to get better control…

(&( GOMER sez, once a GOMER, wlways a gomer…

Thanks for sharing your stories, Cherise and JDavid!! Perhaps others who were misdiagnosed as type 2 will figure out that they need to be tested for LADA from this discussion! Good to raise awareness!


I am glad you are taking control and not waiting on your Doc to figure it out! You are doing good!

I am taking a lazy day today, so I started work on my at letter to go with my labs, (I will get the labs back tomorrow). I go to thinking more about this LADA aspect, and decided to sit down and review it point by point based on DiabetizME’s post;

Here are a few Characteristic’s of Type 1.5/LADA:

-Adult age diagnoses
I was in my early 30s.

- Lean body type.
I was not lean, but not fat either. More like just a few lbs over.

- More abrupt onset of high blood sugars, at the time of diagnosis, perhaps even DKA.
I had not had any real problems till a sore throat I could not recover from and after a couple weeks of hell landed in the hospital. .

-Less likely to achieve good blood sugar control with meal planning or oral diabetes medications.
I worked HARD at exercise and food consumption, It seemed the more strict I was the worse the diabetes was. I rode my bike miles every morning before work, took walks at lunch you name it. What I discovered (for me) was lack of fast carbs made it WORSE and LIMITED fast carbs helped (seems backwards). I also took a pill for maybe a week, less stable and BS level raised. I figured by my own efforts at control I had some but limited natural insulin ability (or a little resistance or both?) I have since less than 2 yrs after Dx had to manage it more like type-1.

-Positive antibodies against GAD-65 or islet cells.
NO TEST done.

-Low C-peptide levels – insulin deficiency versus the insulin resistance that is routinely seen in type 2 diabetes.
NO TEST done.

- Less likely to have a family history of type 2
Mother insulin diabetic, found out AFTER I became diabetic.

If you think you have any of the symptoms listed above talk to your health care provider and share your story here too.

My honeymoon lasted under 2 years and for most of the time HAD to live as a type-1. I also keytone a lower levels than typical for a type-2. I am still saddled with complications from loss of strength etc even with a 8.6 a1c and mixed insulin doses of N + R twice a day. (just not taking enough insulin.

It’s an interesting question/topic…………….


Hi, I’m new to this forum and fairly new to diabetes. I went though similar symptoms - very difficult to get a diagnosis if you aren’t super high. I was aware of it and controlled it pretty well for a while. It was trying to get the right test and dx that I had trouble with. I had two endocrine disorders already - Hashimotos and Vitiligo. Started with frequent urination, extreme thirst (waking up in the middle of the night several times to satisfy both), migraines, hypo episodes. Endo #1 didn’t take it very seriously. Said I was “on my way” to becoming diabetic and gave me a meter to check blood sugar - never did any labs. Dr. #2 saw my readings and asked ME if I was diabetic - helllooo! Endo #3 said my 5.9 A1c was “on the high side” and to come back in two months and she would do a full lab workup. I never went back to her. Tried lo-no carb diet, exercise, supplements, etc. It kept it from getting worse for about a year. Finally, I went to Endo #4 who specialized in the thyroid, diagnosed me with “probable” type 1, diabetes for sure. He put me on 500 mg of fortamet twice a day. He told me that my insulin levels were 0 for several labs (prior and current) and the fortamet would not help if it were type 1. He referred me to another Endo (#5) who doubled the medication, ordered some labs - none of which included Antibodies. The lab messed up a couple of the tests and the doctor never even told me/called with the abnormal C-peptide. I’m a thin person and was treated as if I ate my way to diabetes. He went on and on about what causes type 2 and I told him I’ve been controlling this for over a YEAR now with eating hardly any carbs. I KNOW how to eat and I am LOSING weight and my sugars are going UP. He did not care! Changed to Endo #6 - very large, well known university, nice dr. did all the right tests. The problem was when I went back he confirmed the c-peptide pointed towards type 1, but the ICA antibody was negative. What he didn’t tell me in Sept 07 was that he didn’t have the GAD antibody test back yet. I was on the maximum dose of Fortamet (2000 mg per day) and and my hemotologist tested my A1c at 8.5 in February. Called Endo#6 after this lab and keytone? message started flashing on my bg meter. The nurse told me to test b4 and after every meal to establish a pattern. I said isn’t an A1c of 8.5 a PATTERN (again - HELLLOOOO). She put me on hold for about 20 min. while she checked my chart and told me to come in right away. I did and the doctor on duty told me I was going to have to face the fact I needed insulin. I told him I was ready 6 months ago and his associate was in denial and never gave me the antibody test results. He covered that by saying what good control I had over my diabetes, but now it looked like I needed insulin. ugggg. Now I am on Endo#7 - she is the best! She thinks it’s all linked to my other autoimmune problems. I am getting my Omnipod this week and very excited about it. I’m hoping it helps - I’ve been taking 4 shots a day and just went up a whole % on my A1c (6.5 - 7.6) :frowning: I’m anxious to get started - hoping it forces me to stay on top of it. :slight_smile: Alice


I thought I was the only GOMER who survived one hell after another with docs…


I was driving down the highway and all of a sudden, I could not read any of the road signs - they were all blurred. Long story short, my fasting sugars were 338. They started me on 1000mg ‘s a day of Metformin and as soon as my A1C came back at 9.8, they doubled my dosage to 2000mg’s a day. That was in September 2007. By Christmas, I had altered my diet, learned about blood monitering, and lowered my A1C to 6.8. Thought I had it down to a fine controlable deal. Then in Febuary my sugars started to go up again. My new doctor had me increase my dosage of Metformin to 3000 mg’s a day. I am 5’ 2" and weigh 120.Found out through checking on the web that that was WAY too much. Asked the doctor about checking to see if my pancreas was producing insulin. I got a condisending lecture about how people of my age (50) could not be adult onset type one diabetic.

Went to an Endocrinologist and found out I was LADA. He kept me on Metformin (2000mg) and started me on Januvia which did nothing for me. So, I am off the Januvia, and have started taking 10 units of Lantis at night before bed. I am still not reaching controlable levels, each week I turn in my blood sugar reports and each week the nurse calls and says follow the diet. AT this point, I have manipulated my diet so much with protein, my fellow workers are telling me to quit losing weight.
It all seems a bit overwhelming and confusing, so I am very happy to have found this web site.

One thing I am really confused about is this, I saw my doctor put down on a form type 2 diabetes and asked him why he clasified me that way if I am a 1.5. He said it was because I was on oral meds. When I made the comment that they haven’t worked for me and didn’t understand why he was keeping me on them at all, he said it was to protect my heart. Yet, my blood work is good and I have low blood pressure, so I am still confused by this. After some of the things I’ve read, I shouldn’t be on any of the oral meds and I should be protecting what I have left of my pancreatic function. The diabetic educator gave me a Novolog flexpen but the doctor said not to use it yet. Not that I am looking forward to having to shoot up several times a day, but if the Lantis and the oral meds are not doing the job, isn’t it time to bring in the Novolog? Does anyone have an opinion?


I have the same thyroid diease you have! hahaha funny how we are all a like! I know you are going to love the omnipod. I have been Podding for almost 3 months and I LOVE IT. I am sorry it took 6 endo’s to figure out what was going on with you…Glad all is well…if you have any questions about anything let me know.


I think the Dr should want to place you on insulin to preserve your pancreas…why let it burn out??? Keep bugging your Dr about the insulin because one day your honeymoon phase will end and you’ll need it. Type 2 classification’s for LADA;I think we should be class as a type 1, because once you try to get insulin pumps and such you will have to fight with the insurance company because of you not having any history as a Type 1. I had to fight my insurance company for the OmniPod system.
Your body needs the carbs…try talking to your dr about placing you on insulin full time…Trust me I was where you are now! I don’t ever want to think about going back there again.



Wow, your story is so familiar. Other than our age difference, I’ve had much of the same experience. Metformin and Januvia did nothing. I was eating so low carb in an effort to control my BS, but it always seemed to rise too high. I finally started taking Lantus and have seen a 50 point drop in my fasting BS level (from about 150 to 99)! I was first DX’d as Type 2 and now as Type 1.5. I still have to eat low carb since I don’t take short term insulin, but my pancreas apparently still produces some insulin. Don’t give up…keep going back to your doctor until you have better control. Have you had a C-peptide or GAD antibodies?
Good luck.

Thank you both for responding. I will go back to my doctor and talk to him again and again if need be. As for my other internist, I sent him copies of all the lab work and basicly have not been back. I had a fantastic internist but do to insurance costs I had to change. Now I think I have a really good Endo and the first time I saw him the first thing he said was he wanted to run tests to see what my pancreas was producing. So I have had a c-peptide profile done and that is why the Endo told me I had LADA.

I also think he may be taking me down this road slowly due to the fear in my eyes when he mentioned I might have to give myself shots. However, I have now been shooting up the Lantis for a month and have overcome the initial terror of becoming completely dependant on something outside myself to live. What a strange road this has become!

Hi summer,

A fellow traveler on this strange road! Yes I have had the tests, which I do have copies of, but I am new to reading the reports and don’t really understand them. My GAD results were 30.1 which were classified as high. Do you understand what the GAD numbers are all about?

How long have you been on the Lantus? Initially I dropped into better numbers, but my fasting this week is averaging about 200. I have a nephew that was 4 when he was diagnosed with type 1. He tells me there are only two things (other than food) that I can do to control the high numbers, drink water, or excercise. So I am doing both, but I must admidt I am getting tired of the attempt to control with very little outcome occuring. It looks like your program is working well for you. That must feel great. Thank you for your comments.

The GAD results show that you have antibodies which are attacking your pancreas. Normal range is under 1.5 so it sounds like you have had this for a while. You definitely have autoimmune diabetes and that is adult onset Type 1. I was 53 when I was diagnosed. Your nephew is mistaken. You can not control high BG with exercise when you are Type 1. Drinking water will not bring your BG down. You are thirsty because your BG is way too high. Fasting numbers in the 200s are dangerously high. Lantus alone will not control your BG. You also need short acting insulin with meals. If you have a Novolog pen, you should be using it with every meal. Why were you told to wait before using this? If the Lantus is not bringing down your fasting numbers then you need more. Perhaps you need to split the dose. You need to get back to your doctor and get some guidance on how to slowly bring your numbers down into the normal range. My endo classifies me as Type 1, Juvenile Diabetes, for insurance purposes. The medical profession does not recognize Type 1.5. You probably should not be on any oral meds now that your autoimmune status has been confirmed. Please go back to your doctor or find a new one. You cannot take chances with those high numbers.

I still, after nearly 3 decades have no labs telling me WHICH type I am…

While my best control has been more like T-1, but my diabetes life ahs been one mess after another. When I was first Dx’d, in the hospital with high BS levels, the doc came in and asked me “what the hell are your blood sugars doing so high”, That has been, more of less, with a few better moments, the way me and my diabetes have been treated. Even when I went for my first follow-up from the initial hospital dx, the doc gave me hell saying I was not following the diet, the fact that I was loosing a pound or so a day, felt like crap and understood little made no diff. He did not even check my BS in his office, just said his meter was broke…Patients did not have meters back then.

I ahve to FIGHT ins and even pay out of pocket 100% for some of my meds, since I am considered a type-2 on insulin (no oral meds). Not even teh VA will help with PROPER insulins because I am not consdiered a type-1 by them, and the doc noted in my last visit I was mad they would no provide me with Lantus and Humalog for the MDI routine I am using. You have to have a high a1c or be TYPE-1 to get them from VA. Taking the insulins as Rxd by the VA my a1c was 8.6 and mild DKA, and have complications as a result.

MY kidney function has been falling and this morning my NON-VA nephrologist called, wants to see me sooner due to the recent labs…

I am MAD & FRUSTRATED that for almost all my diabeteic life my doctors ahve always BLAMED ME for not doing better, eyt thye never seem to listen to me when I tell them I WAS doing as told and it was NOT working like they said it should.

I wish I could give some of my uncareing docs my complications and wonder hoe they would have felt if they ahd to ride my roller coaster?

(*&( GOMER, sorry, 4 venting.

Thank you for this wonderful information - I run a Support Group for people with Diabetes in Durban, South Africa, and would love to share your story - can you give me any further information so that i can check out all the medical implications?
Keep healthy and positive - people like you are an inspiration to so many - thank you for sharing

Try being a person with Diabetes, either Type 1 or Type 2 in SA - over 300 people at one clinic once a month with 2 nursing sisters and 1 doctor!!
Type 2’s do not get free strips - only Type 1’s - and there are more complications to 2 than to 1 - you cannot test only once a month - some people look after the motorcar better than their bodies.
Hang in there - your story will inspire so many

Hi all-Your stories really sound familiar! I was diagnosed LADA around 36, but I was considered type II since 28-it took 8 years for numerous Drs to figure it out. My biggest battle has been weight gain since starting insulin. I was normal weight before, but I gained 50lbs in 7 months with shots. Since on the pump, I stopped gaining, but losing it is difficult. Still, I’m happy to have things figured out. My A1C’s are a bit high(7.4) because I have a very stubborn dawn syndrome. This Spring will be 10 years with diabetes, and (knock on wood) I’ve been lucky so far as far as complications are concerned. I highly recommend the pump-I have never felt better-it keeps my sugars much more stabilized, and it allows me to have a much more normal and active life.