I feel the need to tell my story. I friend of mine on Tu actually convinced me to share it. My name is Jasmine and I am 21 years old with Diabetes type 1.5 or LADA. It took a LONG while for me to get my correct type. I was diagnosed in April 2009 with diabetes. Originally before any test was ran or anything they told me I was a type 2 diabetic. I accepted this because I am a little overweight (not obese) and I trusted my doctor. Immediately my doctor started me on pills at first just Metaformin. Even while on metaformin my BG levels was still running over 300. Over the next several months more pills were added on to the pill cocktail including Actos and some other medicine as well. While on the pills my BG level never came down below 300, but my doctor was determine because after all I was a “type 2”.
From April to October I was constantly getting sick and sleepy and just tired didn’t want to go on. Then I started throwing up all of my food. I couldn’t keep ANYTHING down. I just felt like I was dying. So I would go to the doctor at least every week complaining. They started running test on me and everything kept coming back negative. So now I’m sitting here in pain and throwing up looking like a lair for a couple of weeks. Then the last test I had was called the Hydia scan (excuse the spelling). This came back stating that my gallbladder can completely shut down and I would need surgery ASAP. At this time I’m thinking to myself what 20 year old’s gallbladder shut down? That is crazy. Then on top of that my appendix was damanged too so I had to get BOTH removed.
After surgery my sugars were still running pretty high. Finally my doctor told me that he had to switch ME to insulin. Then he made that statement “technically you are type 2 but you have symptoms of type 1 and type 2”. Talking about I’m the small percentage that’s in between. So I asked him was I type 1.5 (LADA). All he can point out was that I was a little overweight so technically I am type 2. I was upset that I didn’t get a test or anything that I searched for an endo. I went to an endo and he just looked at me and said I was a type 2. What the heck?
I just gave up for a second and was like I’m bout to get my pump any ways. Something told me not to give up and get a 3rd opinion. Who actually ran test and heard me out about the insulin and everything and oh yeah kidney damage because there is protein in my urine. She came to the conclusion that I am type 1.5! She broke it down to me and told me that it’s not always the weight. Sometimes your body does something completely different. I’m just sad that I had to search high and low just to find out what type I am.
Thanks for running and following my story. Feel free to ask any questions!
~Jazz
So sorry you had to go all through that. The other way around happened to me at first, the emergency room doctor (and the doctor who was assigned to me while in the hospital when first diagnosed) said I was LADA…He claimed I wasnt producing insulin anymore… I was at that time underweight and 31 years old. I had a very bad experience with him scaring the crap out of me…I changed my doctor to an endocronoogist…run more test…and wallah!..Im a type 2. It took 3 weeks to confirm. And now type2 three years later…Doing much much better control on blood sugar.
Im glad you have your final diagnosis now…gives you somewhat peace of mind…LOL Great news that you are going to have a pump too =)
Dear Jazz,
I know a few type 1-ers , who one may consider a bit heavy than some of us …on the other hand they have type one diabetes …different treatment requirements …continue stay pro-active !!!( I was misdiagnosed , not of my weight , but my age !)
Yeah it’s good to have peace of mind. And when someone asks me what type am I, I don’t have to say idk I can have an answer now.
Yeah I just wish doctors didn’t categorize people. Unless you run tests anyone can have anything wrong with them and you CAN’T just guess it based on appears. I will be pro-active. I have taken control of my diabetes (at least working on it). It just kind of made me not trust doctors fully. When they say something I second guess it now.
A healthy distrust of doctors is a good thing. they can be wrong. invest in a physicians desk reference and a drug book. the internet is also a good sorce of info. after my diagnosis and introduction to insulin, i read everything i could get my hands on. I am type 2 but finally am on insulin, too.
last summer, iwas injured seriously, but doc couldn’t do mri for a week because metformin reacts with the iodine based dye and will immediately kill your kidneys…i am now scared to death of metformin now. i am only using insulin annd diet to control blood sugar…don’t tell my doctor.
Jazz:
I started out as a T2 but, as I got older and fatter, I used up my pancreas and was only producing a minimal amount of insulin. If your c-peptide reading is below a certain point, they consider it enough to get a pump. My diagnosis changed as I got older and they said I was 1.5. They said I many symptoms and signs of both types! That’s just like me … I fall through the cracks on so many of life’s guidelines like income (too high by just a little) or age (not 55 yet or 60 yet). Siiiiiiiiiiiiggggggggggghhhhhhhh!
Keep your chin up lass. Life is always changing. Just roll your eyes back and say, "Oh no … NOT AGAIN!!!
Lois
Hi Jazz - you are not alone, it is possible to be somewhere between 1 and 2. As long as you are getting the right treatment, don’t worry too much about labels. There will always be ignorant people out there, not much you can do about that. Did the docs run an antibody test?
Type 1 (including LADA) and Type 2 are completely different conditions; Type 1 (and LADA) is an autoimmune condition and Type 2 is not. You can’t be “halfway between type 1 and 2” (which is why I hate the designation '1.5) and your diagnosis neverchanges from 1 to 2 or 2 to 1, because one of the important differences is how it beganThe only thing that can happen is you were misdiagnosed originally and get the correct diagnosis. Yes, type 1’s can develop insulin resistance and type 2’s can develop insulin deficiency, but the type doesn’t change.
I’m so sorry you went through all that; how awful! With me they had more “excuse”; I was not only somewhat overweight (though losing weight rapidly) but was also 58 years old. But none of that, as everyone has said, should be criteria for diagnosis. You need a combination of c-peptide and antibodies to correctly distinguish between type 1 (including LADA) and Type 2. I’m glad you are now getting the treatment you need!
Question, Zoe: As they are finding new genetic mutations related to diabetes all the time, isn’t it possible for someone to inheret the genes for both type 1 and type 2? Ameena is so young (only 21) that I think it’s plausible that she could have both the insulin resistance genes of a type 2 and then convert to type 1 (juvenile, not LADA) over a period of months if her antibodies start attacking her beta cells due to her also having the type 1 gene(s)?
Unlucky, but plausible? I don’t understand why a person couldn’t have both? I’m confused.
Are you saying that once they establish that her antibodies are destroying her beta cells and she stops making a useful amount of insulin, then she’d be automatically classified as a type 1?
And why call it LADA in a 21-year-old?
Thanks for any light you can shed! ;0)
Hi Zoe - if we were to draw a line in the sand between autoimmune and non-autoimmune then yes I agree with you, they are different conditions.
In an ideal world everyone would be able to distinguish between autoimmune and non-autoimmune.
But in our imperfect world the distinctions are not always so clear.
I was dx in DKA with A1C of 20+ and BG of 540+ with zero endogenous insulin. I was put on insulin straightaway. I was normal weight when dx. When I tell people this medical history, everyone thinks I am T1.
But they did not find any antibodies. However the way I live my life is exactly the same as an antibody-positive person. When I got home I looked online. T2 forums were mostly useless to me. I lurked in T1 forums reading advice about carb-counting and learning the true tricks about day to day insulin routine. Things they don’t tell you in hospital, like how you don’t need to change your lancet.
This is what I mean by being halfway. Luckily I live in a system where the only relevant boxes that need to be ticked in terms of health provision are ‘does this person need insulin or not’. ‘Type’ doesn’t really enter into it.
Though for what it’s worth, the ADA calls me a Type 1b.
What I mean by Type 1b:
"The American Diabetes Association (ADA) has accommodated such patients in its classification scheme of diabetes as a subset of type 1 diabetes, within a category entitled “idiopathic type 1” or “type 1B” diabetes. The most recent position statement of the ADA (1) defines patients with idiopathic type 1 diabetes as those who have insulinopenia of unknown etiology and are prone to develop diabetic ketoacidosis (DKA)."This is even though I tested negative for antibodies and hence do not have autoimmune diabetes.
Taken from this journal article
I don’t know anything about unusual mutations and people who inheret both genes, Jean, though I have heard others talk about this. In general, if someone is positive for antibodies, and has stopped making a useful amount of insulin they are in fact type 1. As far as I understand, people don’t " convert" types.
LADA is not based on age, although it seems to be most commonly found in older people. It is defined by rate of onset. Latent autoimmune diabetes in Adults is a form of Type 1 that does not have the typical fast and sudden onset of regular type 1’s who often are diagnosed in DKA. It is a much slower destruction of the beta cells which is why LADAs can maintain good blood sugars with oral meds for months to years and are often misdiagnosed as type 2’s.
You are definitely beyond my knowledge set, Lila, and I agree that despite the absence of antibodies you most certainly sound as if you have all the characteristics of a type 1. I know some people believe type doesn’t matter. For me when my numbers started to rise after 15 months the first thing I recognized was that I needed insulin, but it didn’t make sense to me and I wanted to know WHY I needed it so soon. Finding out I was LADA/Type 1 made all the difference to me. I do have Type 2 friends who are my age (62) and were diagnosed way before me and are now insulin deficient and on insulin. But so many things are different in their treatment, outlook and viewpoint that despite all being insulin dependent it is very clear to me we have very different conditions.
The discussion of “does type matter” comes up a lot on here, and I think to some extent that’s personal. To me it matters very much.
Hi Zoe - I usually tell people I live the life of a Type 1 but do not have antibodies. I think that is both medically accurate and also sums up my daily routine. But if you were to apply the ‘autoimmune’ line in the sand, then I’d be in the T2 camp.
I agree it’s nice to get answers but sadly for some of us weirdos, medical science doesn’t have them yet.
Oh! I didn’t know what “latent” meant in this context. That makes sense. Thanks!
Wow, Lila. That sounds really hard.
I had some tests today to check for antibodies. No one ever did, even though we have beaucoup auto-immune disease in my family, and I have Hashimoto’s. I have a grandmother and sister with rheumatoid arthritis and another sister and niece with Hashimoto’s plus some auto-immune stuff with the eyes.
I guess I’ll know in a week.
About 10-20% of children who are diagnosed with Type 1 diabetes are not antibody positive. The same is probably true for adults, though I have never seen stats for adults (hmmm, could that be because adult-onset Type 1 is ignored?!).
Hi Melitta - I do sometimes wonder if I am in that group. But since the hospital treats me like a T1 anyway,there is no difference in my treatment and so I just let it go.
Strangely enough, I never heard of LADA until I started hanging out here. Things seem to be a little different here in the UK. I did an insulin-users’ course with a bunch of T1s and of the 10 people with antibodies, only one had been diagnosed as a child. 8 of them were diagnosed in their 20s and one was diagnosed at the age of 32. So there certainly seems to be good awareness of adult-onset T1. I guess it helps that the system doesn’t make doctors have to tick a ‘type’, rather what the doctors have to tick is ‘does this person need insulin or not’.
Hi Lila: Good that you are getting the correct treatment! And thankfully, things are changing regarding adult-onset Type 1 diabetes and getting a correct diagnosis. Or at least correct treatment. I was diagnosed 15 years ago, that would be the dark ages. Sites like TuD really help to shine light on the problem.