Life with Type 1.5/LADA: How it all started

Type 1 and LADA
61

I just had my endo appt and I came out feeling like she didn’t say much of anything. Basically, she told me that I’m insulin resistant and to just have an A1c checked 2 times a year (if I want), no need to check my blood sugars anymore unless I want to. She ordered the GAD antibody test but said no matter what it said she wouldn’t change her treatment for me (just keep my weight in check - I weigh 117, 5’6", and eat healthy). I asked about the c-peptide and she said it wouldn’t tell her anything about me. That it would only be helpful if we knew my glucose at that same moment. So she reluctantly ordered it but told me it wouldn’t mean anything to her (she’s basically doing it for me). I also asked if it was supposed to be done fasting and she said it doesn’t matter since the only reason we’re doing it is because we’re just “fishing” right now. So basically, she ordered the tests, said i was fine and sent me on my merry way. I asked her should I not be concerned about 2 hour pp’s in the 180 - 200’s and she said no as long as my A1c and fastings are normal.

Argh - I don’t know what to do. Should I just be thankful and move on with my life?

62

I am AGAIN thinking/questioning my diabetes type. I know flip flop, on again off again. I was talking with my wife about my mother, which sparked me into thinking this issue again. My mother died in a diabetic coma. She was elderly and a home visit nurse came by every day to give my mother her insulin. Well the nurse did not come by for a couple days. So I cut and pasted the list (here) and going to do an item by item type review. I Am labeled as a type-2, insulin required or DM2IR/IDDM.

I got into Trouble early 2007 from not taking enough insulin, still have problems from muscle wasting, but now doing better BS wise than ever on MDI, Lantus twice a day am/pm and Humalog on a sliding scale for meals. I figure I still, after nearly 3 decades have SOME limited natural insulin. Also after so many problems bad Mitral valve (A-fibs), CKD-3 etc and FINALLY being in GOOD control, I fear ANY change……except for testing 4+ times a day and 5+ shots a day, I do not FEEL diabetic. My insulin doses are not real high, but maybe just a little higher than typical Type-1. Lantus 17u/am + 17u/pm; carb ratio 1u insulin (humalog) per 10 grams cards and quite stable now.

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

-Adult age diagnoses………I was mid 30s

  • Lean body type……….not lean but a heck of lot lighter than I am now, gainsed a good 60 lbs on insulin.

  • More abrupt onset of high blood sugars, at the time of diagnosis, perhaps even DKA……
    ………I ahd a sore throat, never quite recovered. Landed in the hospital with HBS after drinking 2 maybe 3oz of coke one night. Family doc refused to see me for follow up, just a sore throat he said.

-Less likely to achieve good blood sugar control with meal planning or oral diabetes medications………… Diet and exercise was wasted effort and I did put a LOT of effort into it. After cancer surgery less than 2 yrs later, my doc said my diabetes was “worse” than he thought.

-Positive antibodies against GAD-65 or islet cells…NO known testing.

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

  • Less likely to have a family history of type 2…………My mother was diabetic, type unknown but was insulin dependent and in a coma days w/o insulin. My mothers mother was insulin dependent, my mother’s father was diabetic and died when she was young.

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I am having trouble deciding, do I want the tests, do I want to KNOW?

I have been through many hells with this over the years and do NOT want to change anything, now that I FINALLY have good control and understand what I am doing better than ever in the nearly 30 years of this. Can I be LADA when I still have SOME natural insulin after nearly 30 years?

(&( GOMER

63

Well, it’s nice to actually find some info from others about LADA.I can’t find any books about LADA.
Here is my story:
At the age of 44 and at a normal healthy weight,I was wrongly diagnosed with asthma in 2002 and put on a steroid inhaler. 10 months later I went along to my first blood donoring session. They refused my blood and called a doc. over to see me. He told me to get myself to my G.P. They found I was severely anaemic (I knew it wasn’t asthma) and further blood tests showed I had raised blood sugar levels. Without any further tests, I was told I was Type 2 diabetic and immediately put on Gliclazide. A year later I was put onto insulin. It was only this year, through another diabetes chat forum that I read I was entitled to see a diabetes specialist, that I insisted on seeing one at the hospital. Within two minutes of seeing me and listening to my history he said he thought I was not Type 2 and that I had LADA instead. I asked about having a c-peptide test done but he said it was too late for that and seemed cross that I had not been referred at time of diagnosis. Well, the upshot is, after 5 years of thinking I was Type 2, the tests showed that my GAD result was positive but the ICA was negative. I don’t see my specialist again until March but would like to know, do these results mean I am a definite Type 1 (Latent Autoimmune Diabetes in Adults) or am I an odd Type 2. Any letters I get now state I’m Type 1 but with one negative and one positive result, I’m a bit confused. Can anyone shed any light on this, please? Thanks for reading.

64

If you are GAD positive (antibody positive) you have Type 1 autoimmune diabetes, according to WHO, ADA, etc. There is one book that addresses Type 1 in adults: “Type 1 Diabetes in Adults: Principles and Practice.” It’s meant for clinicians, but it is quite deficient in many areas. Basically, adult-onset Type 1s/LADAs are ignored, even though two to three times in number than childhood onset Type 1s.

65

Melitta

Is it possible to purchase the book you mentioned above? And if so, where can I find it?

Cherise

66

The first part of your story sounds much like mine, but I was immediately diagnosed as type 1,not type 2. I was 22, and 5’4", 115lbs. I went to my doc for pink eye and told to come back in a few weeks for a follow up and new patient physical. I had been feeling a bit off for a few months but nothign specific, just tired, stomach issues off and on, thirsty. Everything was seemingly normal, but then she saw the urine test and saw there was sugar. I went for blood work and my BS came back as 415, a1c over 13. I was immediately put on insulin. Later that week, I went to Joslin Clinic and they agreed that it is type 1. I participated in a clinical trial that was restricted to people w/ a certain c-peptide level, so I know that mine is low.
This June (a year after diagnosis) , my endo seemed to think that my honeymoon is over, so I could go on the pump. However, my pump trainer (a CDE/RN at Joslin) is not convinced that my pancreas is completely shut down since I’m very insulin sensitive and use less insulin than many who are my age/weight. I’m not excessively active either.
I guess there is not much difference in treatment, since I’m already on insulin, but I would be curious to know if this was “brewing” longer than I thought.

67

Hi Cherise–You can buy the book on amazon.com, but I must warn you that it is VERY expensive. I did end up buying it.

Melitta

68

Melitta-
I’m going to have to save my pennies, I would love to learn more about LADA. Thank you for the information

Cherise

69

Jackie-

I don’t know if this is true or not but my Endo (first one) told me your body knows at least 5 years before you know about it. lol I am going t ■■■ this to my list of questions for my next appointment.

70

Funny you mention the 5 years thing. I’ve never heard that before but about 5 years before diagnosis, I was very sick with a high fever and I tested positive for ketones. I was in college and the infirmary just wrote it off as a nasty virus, coupled with the lifestyle of a college student. Maybe that was the precipitating event that started the whole immune system freakout.

71

I may be a little picky but “shooting up” is a term that makes me think you are a drug addict shooting insulin into your veins.

72

While I have never used drugs, I have casually used that term, after hearing someone ELSE use it first reguarding injecting insulin…lol

One apt at the local diabetes center I used the term “high” and that it was not my BS…the nurse flipped out, assUme’d same thing…what I WAS speaking about was my BLOOD PRESSURE, which these days can get into the DANGER zone and the BP alone land me in ER more than once.

I guess a lot depends on the mindset of the listener being on another wavelength than the speaker. Being a hypertensive-diabetic w/complications is ENOUGH to deal with w/o any OTHER factors added to the mix.

(&( GOMER

73

YOu told my story! I was 45 when first diagnosed with type 2. No A1C test, just a fasting BG by my family doctor. I was put on orals, diet, exercise, and education. I was lean, active and ate a balanced diet. My grandfather died from complicaiton of dibetes, by sister developed gestational type I at age 28, and my brother’s daugher was diabetic from birth. It’s in the genes. I maintained A1Cs in the low 6’s for almost 10 years. About a year ago while in training for a marathon, a random A1C came back at 10.4. Mr. doctor started me on Lantus along with the orals. Within 6 months I lost all control of my BG and started on Humalog. I finally went to an Endocrinologist. Subsequent tests showed low C-peptide levels, high insulin resistance, and general difficulty with control I started on a pump and added Symlin about a month ago. I"m still trying to work out the timing of the Symlin and the insulin, but my BGs are averaging under 130. Lesson learned…see a professional as soon as possible. It could have saved my pancreas.

74

Can you tell me the name of Endo#7, as I am looking for the right doc these days?
Thanks!!

75

I Agree! I went through HELL before going on insulin. It took some courage to get over the needle shy bit, but it was worth it!

I think so much of our treatment depends on personal preferances of the doctor/s than OUR needs.

(&( GOMER

76

I was also misdiagnosed as Type 2 by an endo in 2006… here is my story:
I turned 30 in 2005 and noticed at a conference that the power point presentation was all blurry… Great, i turn 30 and my eyesight starts to go…i just figured i was getting old… then i started to get wicked thirsty all the time… craving Coca Cola and i never drink soda… having to get up every hour in the middle of the night to pee… and no saliva (it is such a luxury to have saliva back!!) … my mouth was so dry… i had to keep water by the bed… and lots of nightmares… i was under a tremendous amount of stress at work during this time and thought that was causing these health issues… i weighed myself and thought i gained 5 pounds, but quickly had to do a double take to see that i had actually lost 5 pounds!.. My annual doctor’s visit was coming up in a week so i decided to wait it out and tell her what was going on with me… this all came on so fast…by then i had lost 12 pounds… blurry vision, thirsty, peeing a lot in the middle of the night… oh yeah, and a raging yeast infection…long story short, it took another month before i was referred to an endo, but i still wasn’t told yet that i had diabetes…(my doctor didn’t belive that i had diabetes at all-- too old for T1, too young and fit for T2, only family history of T2 is grandmother who got it at 78! and i don’t even know anybody with T1) i could kick myself for not doing a search on the internet for extreme thirst, frequent urination, and blurry vision… i had no clue that all of these symptoms were related… i also wet the bed 3 times during these two months of symptoms …and a cut on my finger was taking forever to heal… at the endo’s my A1C was a 13… i was told i had diabetes… complete meltdown… put on metformin with a follow-up with an educator in 3 weeks… in the meantime, i read 3 books about diabetes, and of course i skipped the chapters on Type 1 because i thought i had Type 2… back with the nurse educator, my numbers did not budge, so i was put on Lantus … and as many of you know, thinking you have T2, and then finding out you have to take shots was devastating… but it worked!! and i didn’t understand why the endo kept lowering my dose, and then took me completely off of insulin and put me on different pills… i was so afraid to eat any carbs because without the insulin i would stay high… i lost more weight (down 30 pounds now), but my cholesterol went sky high (350)… after one year with that endo (told me i was born with a bum pancreas because low C-peptide, but that technically you can’t be T1 because you are producing insulin, so you are a T2, “a classic case of insulin dependent Type 2 diabetes” oh, really?) i could not accept this… i realized that I had to be more proactive about my own health… i switched to Joslin and they did an antibody test… i was positive for GAD antibody … C-peptide still really low… HDL really good, LDL really bad… BMI 21… started on MDI and gained some, not all, of my original weight back… now i’m counting carbs and calculating my own insulin, and it is such freedom to eat what and when you want… BMI now 24… A1C 7.1!! and looking forward to better control with an insulin pump… Great topic, hopefully people searcing will find this discussion and know what they have right away… and hopefully the doctors will too…

77

Jenny-

Wow! Our stories are almost the same. I’m glad everything is starting to come together for you! Great A1C! Btw, I agree with you 110% you have to be pro active with our health.

78

Is it possible to have negative antibody tests (GAD and islet) and relatively normal c-peptide in the early, early stages and then those antibodies appear later?

Thanks!

79

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.

80

I am LABELED as a type-2 insulin REQUIRED…Guess now that fits, sort of.

I have done a lot of research over the past nearly 2 years, because I did not fit any typical pigeon holes…

When I was 14 I was told, in a hospital (abdominal pin, apendacitis ruled out) I would end up on shots, like another kid in the hospital, a deaf mute not less, I knew I did not want to be like HIM!

That was the start of my decline… a little over a year later, back in the hospital w.janduice/hepatitis and hospitalized for 5 weeks, home 2 more weeks and watched like a dickens at school for a while. Nothing like being in 9th grade and teachers on the alert and being told that if for any reason I did not feel well…you know.Then later my vision went bonkers, but kept silent about my abrupt vision change (my dad had gone blind recently, so I avoided telling anyone.

I escaped the needle, even got in the Navy. (needed a leter from a doc to even get considered). Then in 68 I was hospitalized again, probable pancreatitis and recovered (had forgotten about that) but again had to get new glasses. The navy could not seen to get them right, so had to go to a doc outisde, prisims had to be doubled.

I left the Navy, got married and again…

I ahd a sore throat, then pleurasey then hospitalized for high BS level. The Co doc (my boss asked me to see him, I KNEW something was WRONG, so did everyone else but my regular doc refused to see me for followup, Just a sore throat he said) …anyhow the co doc came in and GAVE ME HOLY HELL for not having my BS in control…heck I did not even know, at the time, what he was even talking about.He also complained my triglicerides were very high, that and the pluresy are signs fo PANCREATITIS! more common among DIABETICS, so no wonder he THOUGHT (wrong) I knew I was diabetic.

more…later, I gotta run 4 now…

(&( GOMER learns WHY he became a GOMER…