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.
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.
Replies to This Discussion
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Permalink Reply by Anita on -
Any other Type 1.5s (or Type 1s) who have experienced an increase in cholesterol or blood pressure? Before DX, I always had low/normal blood pressure and good cholesterol readings. After DX and starting insulin, however, my blood pressure readings are high/normal (now 120/85 +/- a few points (used to be 100/60)) and my cholesterol increased as well (from 139 to 152 to 191).
Any correlation betwen cholesterol, blood pressure, and type 1.5 or 1 diabetes?
Thanks. As always, I appreciate any advice.
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Permalink Reply by Anthony Holko on -
Triglycerides and cholesterol will go to the moon when the blood sugar is high. When BG high I find that my hearth pounds harder but the relationship to blood presure is less clear.
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Permalink Reply by FlyWilley on -
I know this is an old discussion but still want to comment. I finally put all of this together after beign hospitalized in Nov this year.
Ovarian cysts since I was 11 Diagnosed with possible PCOS. (required an uterine oblation and tubaligation at age 28, only able to have 1 child)
Have had issues with yeast infections for as long as I can remember.
When I was 14 I started passing out at school very often about 9am. Approximately 2 hours after breakfast. It happened so frequently that my teachers, principle, and even my mother thought I was faking it. Mainly because my FP doc couldn't find anything wrong with me and suggested I didn't want to be at school. After 3 episodes when no one would listen I called my grammy. I was so sick. She told my mom to go get me and bring me to her. After listening to my symptoms she checked my BG. It was in the 40s. Next episode, she checked it again. It was in the 40s again. Very next one I was in an ambulance getting a D50 push. Shot to the 200s then back down to the 50s.
I can remember having severe stomach pain and vomiting off and on, beginning at the same time as the passing out. Checked for appendicitis many times with negatives. My doc told me it was probably heretitary ulcers and as far as the BGs he was assuming I was eating too many carbs causing my BG to shoot up so my body was over producing insulin and resulting in hypos. So his instructions were to eat a candy bar when I felt shaky.
My weight always fluctuated in a 30-50lb range. Never really too over weight.
When I was 18, while pregnant with my son. Developed gestational diabetes. Which was treated during pregnancy. Then after the birth of my son I was told to stop treatment I would go back to normal.
Age 23 I was told I had 600+ glucose in urine and to be checked for diabetes. Doc did blood work said nothing to worry about.
Finally at age 25, I was experiencing severe dry skin on my legs. Causing cracking and sores on my legs. A 3 month reoccuring yeast infection. No energy. Mood swings. numbness and tingling in hands and feet. Up 3-4 times at night to pee and drink large glasses of water. Went to doc and was diagnosed type II diabetic because of BG reading, A1C and family history. Started Avandia, learned carb counting and started aerobics. A1C had huge improvements in 3 months. 3 months later with similar carb logs and A1C climbing higher. Increase dose. A1c still climbing. Lost weight got down to 160 at 5'7". But still climbing. Also diagnosed with diabetic nueropathy.
Over a 5 year period, I was changed from 6 different oral meds and Byetta. 1 by 1 they worked then failed.
No thyriod issues. Always had low BP (80s/40s) and cholesterol. Had gallbladder removed at 27. Heart Cath's at 28 for chest pain, tachycardia and fluctuating BGs (200-400). No heart issues.
Last Jan, complained to FP that I was getting severe headaches and tingling in hands and feet after eating. And several ketone readings on monitor plus BGs of 400 that would only come down with insulin in the ER. She suggested it was time to start insulin. She gave me a basic sliding scale for BG correction with novolog and lantus 10U. She then called the Endo and got me in for the next week.
Endo started a ISF and I:C plus Lantus 20U in Feb with bi weekly adjustments per readings. Checked Thyroid and insisted still Type II. In May my A1C went from 12 something to 8.4 and 7.6 in August. But in Sept I got Bronchitis and nuemona. All treated at home. Was on an Albuterol inhaler till Nov with reoccuring UPIs. Nov 13th I was admitted for sinus infection with secondary hyperglycemia of 420. The hospitalist questioned type II and suggested a c-peptide. The fasting gluc was in the 300s and the c-peptide was 1.5 and A1c of 10. He suggested it was low and that was the 1st time I heard the term LADA. Went back to endo and he declared it was still type II and no need for further testing but suggested an insulin pump and discontinue use of inhaler.
I don't have a single complaint with the insulin. I feel better now than I did when I was a teen. But I would like an accurate diagnoses. Should I pressure for the anitbody test or should I accept the type II diagnosis.
PS my mother has been Insulin Dependent since she was 40s. Sudden onset.
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Permalink Reply by Gerri on -
Staggering how many of us have to get terribly ill before our symptoms are taken seriously.
I had hypoglycemia for years & no one suggested that it was anything to be concerned with. Wasn't as anywhere as bad as what you experienced. Also have always had low BP, low thyroid & bouts of ovarian cysts. The dots weren't connected. Since I felt fine, I didn't pursue it.
An accurate diagnosis is important for your own knowledge to manage diabetes, possibly for insurance purposes down the road & for treatment, even though you're on insulin. Who knows what new treatments may be available in the future that may be only for T1 or T2s.
I think there are many more types of diabetes than are currently known.
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Permalink Reply by JDavid on -
Well fly-W...........
Kinda been there done that.........
When I was in the hospital at 14 I was told I would end up on shots (like this other kid I knew, a T-1 diabetic), I told them what thye could do with their shots and I got better. I got sick again when I was in the Navy, 22 at the time, and after an overnite stay was allowed to return to duty. I was told I had to pass a urine sugar check first and guess I did.
Both time I had nasty left abdominal pain, when I was 14 they ruled out apendix, so both time a case of probable pancreatitis. A few things I learned was going having a few, more like 1-3 drinks, instead of a hangover I felt BETTER, much better the following morning. When I was in Navy A-school I would go out drink a little the nite before tests so I would be bright and awake/alert. (I was in the top 3 of my class). Later, I went into to my second job at a store the morning after the Christmas party, jsut to rub it in and have fun. Everyone else was hung over and were shocked to see me so chipper, after a night of partying.
A few years later I ahd a sore throat, my fam doc refused to see me for follow-up, he said it was JUST a sore throat and he had SICK patients that NEEDED him. I was SICK, I knew it, everyone that knew me knew somting was WRONG! My boss at work called me in asked me if I would see a doc if they made me an appt. My boss (my regular job at the utility co) was relieved when I jumped at the opertunity.
The Co doc gave me a clean bill of health and I returned to work in time for lunch. That evening after dinner I sat down to watch TV and drank jsut a little Coke..........Wife caled 911 and a meatwagon ride to ER. I was admitted to the cardiac ward for lack of O2. When the Co doc came to see me at the hospital, he gave me holy hell for not having my BS in control, assUme(ing) I knew I was diabetic. Heck I did not even know what diabetes was and only realized what had happened in the past in hind sight. .The next year plus was a living hell but being watched for BS levels very clsoe by my new famdoc. After cancer surgery in Jan 82 my fam doc realized my diabetes was "worse" than he thought and I ended up on insulin.
For me insulin was a god send, I felt so much better, but I still went through a few hellls with my BS being a bit on the unstable side. Now I am on MDI, Lantus 2x/day and Humalog and never better diabetes wise.
GOMER happy holidays everyone.
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Permalink Reply by Melitta on
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Hi FW: I am so sorry you have had to go through so much difficulty. You have a family history of Type 1, you don't fit the profile for Type 2, and you have never been given a definitive diagnosis. Sometimes, after many years, the antibodies are no longer present, sometimes they are. I always think it is good to get a definitive diagnosis and get treated for the disease you have. Also, insurance often will not cover pumps or CGMs for Type 2s, so if you have a diagnosis of Type 1 more technology options are available to you. I would push for a definitive diagnosis. Sadly, most new onset Type 1 diabetics are actually adults, but the medical community is so ignorant of the prevalence of Type 1 in adults that misdiagnosis as Type 2 happens more often than not.
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Permalink Reply by FlyWilley on
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Thank you Melitta. But no sorries are needed. I'm just happy I finally got the meds I need to be me again.
Well I have both type 1 and 2 in my family. But most of my family with 2 are extremely overweight or elderly. The more I read about the LADA the more I feel I fit in that group. But I gotta get my doc to test for it. He currently has me down as Type 2 / insulin dependent. So if I'm denied for the pump I will go see the hospitalist that seen me in the hospital. He seems to know more than my endo...lol. I guess it takes a doc with a heart to care.
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Permalink Reply by JDavid on
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Proper Dx can be CRITICAL!
Since I have other complicating factor/s........I can be a mess even with a a1c of 8.6...problem is VA consdiers 8.5 GOOD/acceptable control for a T-2., so I fail to qualify even foor Lantus, not to mention humalog/bolus.
In my wierd case I am sometimes 100% insulin dependent and at other times I have a little natural insulin jsut not nearly enough. I have had several episodes of mild DKA, not common in the T-2 camp. The last time I had an insulin routine change/update, I was sent to the local diabetes cetner and the doc there jsut looked at me and said "type two". I do have a few but not much extra weight. I have to work at not loosing much weight.
I now ahve a better endo at the center, I am still labeled as T-2, but he never makes changes of more than 1u or 2units/day at a time to my insulin dose. I KNOW aoe to test my basal, carb ratio & correction factor on my own anyway.
I noted above I ahve other issues....well I am being screened now for MS. My famdoc called me in for a MS talk last fall saying "it fits'. If the MS is confirmed, then they may need to reconsider my type as MS is autoimmune and that raises the odds of my diabetes actually being T1.
GOMER
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Permalink Reply by FlyWilley on
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My Endo keeps saying that to me to stop the discussion too.
I really hope it's not MS but if it is atleast you'll have a treatment plan.
Keep me posted.
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Permalink Reply by JDavid on
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oh my endo does not say anything about my weight, I don't NEED to loose, could loose a few but not much. I used to be SKINNY.......lol. I also used to feed the insulin I was on, now with the new basal/bolus routine I only take what insulin I NEED. So instea of gaining weiht due to insulin I am loosing a pound here and there instead (gained a few over the holdiays...lol)
Whatever it is, MS or something else, I have had it longer than diabetes. It's been fairly mild for decades, now it's impacting my mobility,and has been for a few years, a whoel new ballgame.I used a cane off and on for many years till I fell and tore my shoulder in Jan 07. That drove my diabetes nuts!
So far I think my famdoc is right about the MS and when he gave me the MS talk he told me these days there are meds for it now. I have C-spine lesions but most are upstairs in the white matter (CNS) not gray matter. They are ALL in areas favored by MS and my Hx of Sx also favor MS. Could be a lot worse; they were checking for MD, MG ALS etc....so far those are all neg.
I have an apt at the MSU MS clinic this week with a neuro-opthamologist to get my prisms (for diplopia, double vision) checked and updated as needed, that was last done by a specialist in Orlando in 1984..........way over due
GOMER .
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Permalink Reply by FlyWilley on
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Hey Gomer soory took me so long to see you replied. How was ur appt.? Anything?
Let me know. Also, I never officially thanked you for sharing your story with me. So, Thank you.
I started the insulin pump Jan 7. So far my numbers are way better. My A1c was down to 8 and we are expecting a 6 something come May. Still adjusting numbers though but I think that's going to be a lifetime habit right. I'm holding up pretty good but this week the fibromyalgia is eating me alive. Glad it's my week off...lol. Well I hope all is well.
Angie
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Permalink Reply by JDavid on
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Hi Fly et al......
Well the verdict came back Jan26, RRMS, no treatments started as yet... unless you call a power chair treatment.....lol Had another brain MRI plus full spine, couple lesions there and a 3cm cyst that is mildly (??) depressing/flatening my spinal cord. I am now usng a chair part-time, at least I am not confined to it 24/7.
The MSU MS clinic was another worthless waste, guess they didn't want to deal with a 60s patient, probable same reason as Wayne State. Dr Kahn, head of the WSU MS clinic flat out said to me, we deal with mostly people in their 30s NOT 60s.......
Funny thing is it was the VA who ended up diagnoising the MS, funny because I complained "adamant" about it in the late 80s to DEAF ears and cold harts. .They sent me to the VA shrink dept we simply said I was "adamant" about something being wrong, jsut not showing up in testing. They did admit I was NOT depressed, but would not advocate to help me seek to find out what the problem was.
Glad to hear the pump is working well for you. You get your a1c down in hte 6s, and stable you will feel a lot better adn have more energy.
GOMER
.....
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