How Did It Happen?

They say everyone gets 15 minutes of fame some time in their life. I never dreamed mine might come as the self-appointed poster child for adult late onset diabetes (LADA). How did we get here, any of us?

A lot of people are sharing their stories with me these days, so I thought it was time to come clean with mine. I was diagnosed May 21, 2003. First, there were about three weeks of running myself into the ground as I got up four to five times a night to care for my sick baby. Naturally I was exhausted and dehydrated, but just assumed this came with the territory — possibly exacerbated by the allergy pills I was gulping down to thwart my own runny nose.

The thirst became stronger and stronger until it reached Pirates-of-the-Caribbean-Curse proportions, where drinks just seem to pour right through me with no effect at all. I lost weight faster and faster, until bones were poking out everywhere. Here I started to get scared. I didn’t dare consult a doctor for fear of what I might find out. But my husband wasn’t having any of it, and sent me in.

Omitting the gory details, I was at 540 BG for my original test, and landed in the hospital the very same night with 738 BG (!) -– apparently close to ketoacidosis and diabetic coma, although I didn’t feel that sick. They kept me in the hospital for five days, an eternity with my then 5-month-old baby along with a 3-year-old and 5-year-old at home. Nasty!

The first few months were a blur of doctor’s appointments, new medications, and eating to gain weight (talk about your lifestyle changes!) Turned out I had thyroid disease as well.

And then the hives hit… For six months, I was covered with itchy red splotches that turned out -– after much of my blood was shed in test vials — to be gluten intolerance. See my other posting on the joys of that snag.

But things have gotten BETTER. I now take good care of me. The kids just have to wait sometimes, which is good for them, too, I think.

Now, every time I work out I think of myself lying there in that hospital bed totally depleted and wondering if I’ll make it to 50 -– and I’m so glad I can exert myself. I work out a lot now; I’ve got the kind of motivation you don’t get from vanity alone.

In case you’re wondering, they put me on Novolog (Novo Nordisk pen) and Lantus at night. My control has been pretty good so far, but they say I’m still in the diabetic honeymoon -– which of course means the body is still producing some trace amounts of insulin on its own. For two years now, I’ve been plugging along, half the time trying not too get too obsessed with the diabetes, and half the time ravenous for information and tips to better my control.

And now I’m a diabetes blogger. How about that?

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26 Responses

  1. Tekakwitha
    Tekakwitha May 5, 2005 at 12:29 pm | | Reply

    Thanks for sharing your story Amy!

    Tekakwitha

  2. terry
    terry May 5, 2005 at 1:07 pm | | Reply

    Diagnosed Jun 98. Probably hottest weekend of the year. Came home from work early puking. For three days, just kept right on upchucking. Nothing but water. Became dehydrated. Taken to the Dr. Initial BG test was 540. Weight was 135. (I’m a 5’11′ guy, I looked like a male version of Ally McBeal). I think I heard “diabetic coma” mentioned. I know I felt like I was at death’s door a while. Three nights in the hospital being pumped up full of IV and then the education. I couldn’t wait to get out. Not the illness getting to me, but the hospital’s cable TV only had 5 channels, in addition to the 4 networks (UPN & WB didn’t exist then) and none of them had wrestling!

  3. Printcrafter
    Printcrafter May 5, 2005 at 4:14 pm | | Reply

    I’m LADA too! Miss-dignosed as T-2, but now happy on a pump. My insulin dried up within three months (short honeymoon!) But I was lucky, it was caught before I landed in the hospital (‘course hypoglycimia landed me there later, but that’s a whole ‘nother story…). But I’m glad you’re our poster child Amy!

  4. tim
    tim May 5, 2005 at 9:44 pm | | Reply

    Thanks for telling your story.

  5. Violet
    Violet May 6, 2005 at 7:55 am | | Reply

    Amy, congratulations on this article–how wonderful that your hard work has been recognized in this way. It’s funny, isn’t it, how hard it is to see meaning in some events as they occur (e.g., diagnosis), but then much much later we can look back and see that all along we were on a certain path, the one leading us to where we are now (e.g., revolutionary advocate for diabetes sufferers). Which is NOT to say that it’s somehow a “good” thing that you got this disease–or its autoimmune pals–but merely that perhaps these events aren’t entirely devoid of meaning. If ya know what I mean ;)

    :waves to the other LADAs: I am one of you too!

  6. ThePef
    ThePef May 6, 2005 at 6:57 pm | | Reply

    Amy and I have written back and forth about the onset of LADA. I used to blame mine on GE, the company. I was experiencing a terrible amount of stress being in charge of a vendor relationship to them. I went through a terrible flu at the time, followed by a classic symptom of diabetes, though no one can explain it. The frozen shoulder. Went through physical therapy on the shoulder, attributing it to tendinitis.

    I followed that with a period of high thirst, and weight loss. Hit the bookstore, and diagnosed myself and called my physician. Fortunately I have not wound up in the hospital, I don’t think I have gotten above 400.

    Currently I am maintained through a combination of Lantus, and Glucovance. I am starting think I should go on the pen for the midday highs from eating.

    Keep up the great work. One day.

  7. Nick
    Nick May 6, 2005 at 8:02 pm | | Reply

    WOW, Amy!!
    Thanks for the LADA link. Guess what I just learned from it? I’m LADA too! I always thought I had type 1 diabetes. Now I know the long name.
    I think. “Adult Late onset diabetes”
    I got hospitalized with hyperglycemia too. But I was only hooked up to the insulin infusion machine for about 48 hours in the hospital. It was a long 48 hours! I remember the week before going to the endocrinologist, I was running outside when my leg cramped up so bad that I lay on the grass and writhed in pain for five or ten minutes before it felt good enough to put weight on it.

  8. Laura the LIVabetes Glucose Goddess!

    Hi Amy!

    You Go Girl! Thanks for sharing your story.
    The Glucose Goddess here is also a LADA too!

    Hey Amy, Did you know that diabetes used to be called “The Pissing Evil”? (I think most of us can relate to that!)

    Diabetes Joke of the day:
    If Count Dracula got diabetes would he have to change his name to “Count Carbs?”

    Keep up the good work Amy!
    With Peace and Pasta,
    Laura the LIVabetes Glucose Goddess!

  9. Rachel
    Rachel July 16, 2005 at 4:29 pm | | Reply

    Thank you for this wonderful website and blog! I have been diagnosed with type 2 (after 4 years of pre-diabetic levels) and hypothyroid this year at age 29. Luckily, I am controlling the first through diet/exercise only and it didn’t take long to find the “right” dose of thyroid replacement for me.

  10. johnboy
    johnboy October 25, 2005 at 5:33 pm | | Reply

    Yes, amy, i am LADA too also with a long honeymoon period (at least 3 years, i think). I was diagnosed 5 years ago T2 at my PCP and then LADA by my endo. Pray the honeymoon lasts as long as possible. Mine gradually faded as expected. :)

  11. Leslie
    Leslie November 17, 2005 at 9:19 pm | | Reply

    Great Blog!! I was diagnosed at age 29 and have been living with it for 13 years. I was originaly diagnosed as a type 2 ( bad doctor) but have been re-diagnosed as a type 1. I have a great endocrinologist and am now on the pump( which was a the right decision for me after taking 7-10 shots a day). My numbers are lower than they’ve ever been and I have a lot more energy.

  12. Matt Pasterfield
    Matt Pasterfield December 12, 2005 at 3:54 am | | Reply

    I am pleased to read this. I have just been diagnosed with diabetes and am awaiting the results as to which type. For me it was rapid weight loss at the age of 36. I am a slim build and have a brother with type 1. I had FPG of 365 and believe I caught this early through a blood test. I strongly believe that I have LADA. I’ve been put on insulin quickly, a long acting base (Glargine), but am considering moving onto a quick fast acting hit for lunch time highs. Pumps sound good too, I’ll give that a go if I need insulin long term.

    All the best and please keep the forum going, its a great help.

    Matt

  13. Cynthia Fisher
    Cynthia Fisher May 7, 2006 at 7:32 am | | Reply

    Gosh some of the stuff I read here, makes me look like a lightweight. But I guess I am just looking for some answers. I am not manifesting any of the typical symptoms of Diabetes onset, such as extreme weight-loss or continual thirst, but I was wondering if any of you can tell me anything about Peripheral Neuropathy (PN), and your experience with it. I have been experiencing very bad numbness, tingling, and burning in my feet and hands, the problem with my feet, is it has recently extended up to my waist, and I would swear I had Shingles. I can tell you, I don’t eat properly, I an single, and eating is always a big dilemma, I have yo-yo’d and gained and lost the same 15 lbs. for probably about the last 3 years. My Step-Father is an insulin dependent diabteic and he took my blood yesterday, after not having eaten much and it was 139, I know that’s low compared to some of the levels I have read here. Anyway I guess I am looking to see if any of you experienced PN as an early on-set symptom. Thanks if you read this and respond. Cindy Fisher

  14. patricia4336
    patricia4336 May 7, 2006 at 8:20 pm | | Reply

    Ok, I was first diagnosed with Type 2 Diabetes on March 21,2006.My 7 day average is 117.I am still in deninal about the whole diabetes thing,I had surgery(fybroid tumer) last year and NOONE noticed that my blood sugar was high! My Mom also had Diabetes-we buried her 4 years ago today.Is there a cure for this disease ? Or will my blood sugars get higher and higher or what! I am very frustrated at the moment!

  15. hinson
    hinson May 23, 2006 at 7:42 pm | | Reply

    Anyone with LADA remember getting either a rubella vaccine or MMR vaccine in the last 10-15 years???? I was diagnosed 2 years ago and know that the “virus” that causes the autoimmune reaction is a rubella virus. There is a test called GAD-65 (I may have the number part wrong) that is done to determine if you have antibodies to the rubella virus. Let me know if you have LADA and recall a vaccine of the type I mentioned. I am curious to test my theory on this. I got a rubella virus at the beginning of my pregnancy approximately 10 years ago.

  16. susan fisher
    susan fisher July 10, 2006 at 2:09 pm | | Reply

    Diagnosed in a semi-comatose state at age 6. I had, by that point, been sick for 3 weeks. Started with a throat virus – saw the doc three times, but he never did a urinalysis!

    By the ‘end’ I was sleeping 21+ hrs a day, was down to 40-something ethopian kgs, and couldn’t breathe (very heavy gasping breaths). When the doc saw me at that point, it was simply, “Oh my god, we’ve got to get to the ER.” I passed in and out of consciousness that night and then was out for two days. My veins had collapsed too.

    My blood sugar was unreadable by the equipment in the hospital (this was 1983), which puts it at over 1500.

    The silver lining? I was so young I don’t really remember it ;)

  17. Gary Krauch
    Gary Krauch September 10, 2006 at 10:42 pm | | Reply

    Hi Amy, nice article, interesting to read about the many other adults with LADA.

    No one ever remembers type 1, type 1.5, type 2. To most people, It’s either juvenile diabetes, or adult onset, or worse, “you just have diabetes because you are *overweight and sedentary*, it’s all the same to me, and it would go away if you would just lose some weight”

    I was diagnosed in 1999 as a type 2 because, as my doctor at the time said, “you are 39, you must have type 2″; Never mind that I was a 10K runner, was still losing weight like crazy, drank a million gallons of water a day and visited the bathroom every 10 minutes *AND* my father and sister were *BOTH* diagnosed type 1 at age 19.

    A trip to Boston Joslin and a test for antibodies revealed I was positive for anti-gad antibodies, and I was re-diagnosed type 1.

    I’m doing well now, on an insulin pump, AND for my latest adventure, also hooked up to a DexCom CGMS, which I blog about daily.

  18. Annie
    Annie September 15, 2006 at 1:00 pm | | Reply

    I was diagnosed on 7/12/06–the 2nd worse day of my life. Classic symptoms–weight loss, thirst, blurry vision, permanent seat in the bathroom. This was devasting to me. I am a runner, normal weight, eat right, relatively young-43. Sometimes I look around and feel so angry that I did everything right and have this nightmare to deal with while most people are still out there eating what they want, whenever they want. I have become a clock watcher. I live my life by the pre and post BG’s I need to do. I am lucky though. I am a nurse so I already understand a lot about the disease. I know how to give injections and what the blood values mean. I already have a healthy diet and exercise so there aren’t huge changes to make in my lifestyle (except for that clock thing). At times I feel so vulnerable and that makes me scared or angry. It brings about your mortality knowing you have to always be prepared with food and insulin wherever you go. I am planning on getting a pump in a few weeks. I hope I like it. Wearing that thing doesn’t really appeal to me. I am hopeful about new research and a cure. Until then, thank you so much for this site. It has provided me with information, comradery and levity. Best wishes to you all. Stay healthy.

  19. cindy
    cindy October 27, 2006 at 8:47 am | | Reply

    In regards to Patricia’s question – yes – I had to get the rubella vaccine prior to my pregnancy as well. My son is 7 years old so I had the vaccine approximately 8 1/2 years ago. About 1 month ago I met the “pissing devil” BIG TIME – I have now been diagnosed as Type 1 without question. Is there a correlation between the rubella vaccine and Type 1? Please keep me posted. Also – thanks for this site – Sometimes I feel very alone with this since the type 1′s I know have been dealing with this for years and I’m still struggling with coming to grips with the diagnosis and treatment.

  20. Evelyn Lieberman
    Evelyn Lieberman December 13, 2006 at 8:05 am | | Reply

    I am not able to order any refill cartridges for my Lasette. I have tried to contact Cell Robotics without success. They were in financial difficulty. I’d be interested to hear if you have success in contacting them. Perhaps you should take the link off your website. If anyone has any refill cartridges that won’t be used, I’d like to buy them.

  21. Linda von Wartburg
    Linda von Wartburg January 6, 2007 at 11:48 am | | Reply

    If you’ve got a double chin,
    Don’t worry.
    If your butt’s not all that thin,
    Don’t worry.
    But if your belly is a ball
    That precedes you down the hall
    Worry.
    If you haven’t seen your pecs
    Since 1986,
    If your abs just disappeared
    In some forgotten year,
    Worry.
    If your belly’s big and fat
    Instead of nice and flat,
    It’s likely that you’re sick
    In fact, pre-diabetic.
    So cut down on your intake
    And walk yourself around.
    Don’t wait until your body
    Can’t help but mow you down.
    That belly sticking outward
    Is pointing to your grave.
    It’s not a laughing matter.
    The more you lose, the more you save.

  22. Mary
    Mary January 10, 2007 at 9:54 am | | Reply

    I can’t wait to read more on your site because I had hyperthyroidism which was treated with Lugos Solution, which destroyed a good part of my throid functioning,causing hypothyrodism. Then I was diagnosed with diabetes 1.5 and shortley after that I was diagnosed with Celiac disease, which is a gluten intolerance. I have had no success in getting my Blood levels down.
    I am amazed to meet someone who has been where I have been.
    P.S. My daughter has Lupus another autoimmune disease. I can’t help to feel this all has a lot to do with mineral absorbtion.

  23. Erica
    Erica November 16, 2007 at 8:54 am | | Reply

    I am so glad to read all of your comments. I was diagnosed as a type II about three years ago. This year after still having a A1-C over 11, my wonderful MD decided to test me for the antibody and look at my C-peptide levels- low and behold, I am a type I, late onset.

  24. ruslan djafar
    ruslan djafar July 9, 2008 at 2:56 am | | Reply

    Hai Amy,
    I was diagnosed DM type2 one year ago. I am having herbal to treat my DM, and now my blood sugar is going normal after 6 month consuming the herbal tea.
    I also try to record my DM experience in my weblog, but still very new or baby blog.
    Sharing information with each other who also have dm.

    Oh yes, I am from Indonesia, we have a lot of herbal in Indonesia.
    You can visit my just borned blog at:
    http://diabetesmellitusnews.blog.spot.com

    Regards

  25. Tiffany
    Tiffany March 5, 2012 at 9:44 pm | | Reply

    Long story short…

    Had been getting severe fatigue and dizzy post meal for several yrs prior to testing bs myself. At fiirst real quik post meal peaks to maybe 180. As time passsed my peaks were delayed and started peaking around two to three hrs postmeal. All the while consulting w numerous docs and endos who said all was well…just a pre diabetic.

    Finally consulted a endo who did more extensive labs…the antobody pnl was all neg except for islet cell AB which was slightly elevated. Still was having hi bg. Some as hi as five to six hundred but not that often and the adrenaline rush at seeing those hi readings brought it down, it would plummit w in ten minutes the great majority of time to a normal reading like 140. And I made sure hands were clean, readings were not errors.

  26. Tiffany
    Tiffany March 5, 2012 at 10:02 pm | | Reply

    Almost done here…

    So endo says I may be a type one based on results at that point. So diet, exercise and test yada yada. For several mos. Followup she find im b12 def. Start vit supplement. Levels out. Then I asked her bout my hair cause it is brittle and breaking. Tells me take biotin. Meanwhile, bfore I strt taking biotin she labs the islet cell ab again per my request. Still trace elevation, not completely normal. She doesnt know what to make of it all now. Says im just a pre d though im thinking otherwise npw. As a previous comment said they were honeymooning for three years and thats what I think I am going thru, plus I was taking a hi dose of biotin daily which I have cut alot since I was hypoing way too much. That said im avging one to three hypos per day but my bg is not real low like before. It is running higher now.

    Im wonderinv what the longest documented honeymoon in LADA is in yrs? Just curious…

    Thank you, Amy for sharing your story. Your a real trooper!

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