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  • Anyone Diagnosed Type 1 Over Age 35?

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    Old 04-03-2006, 05:28 PM   #1
    vikingirl
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    Anyone Diagnosed Type 1 Over Age 35?

    Hi All...wondering if any Type 1's were diagnosed after age 35 and how you found out you were Type 1? (i.e. Was it a transition from Type 2 to Type 1 or an original diagnosis of Type 1?).

    Your replies much appreciated as always :-)

    Cheers,
    -Vikingirl

     
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    Old 04-03-2006, 06:27 PM   #2
    Cora1003
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Just thought you might like to know that t2 does not transition into t1. They are 2 different things. T2s may become insulin dependant, but T1 is an autoimmune disorder.

    Cora
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    Old 04-03-2006, 08:32 PM   #3
    Mommyof4
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Most people diagnosed at that stage in life will find that it is simply insulin dependant type 2. You can have a simple blood test called a C-Peptide to tell you if you are making any insulin at all. That can be an indicator as to what type of diabetes you are diagnosed with. Good luck
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    Old 04-04-2006, 07:22 AM   #4
    vikingirl
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Hi Coravh - didn't think there was such a thing as Type 2 to Type 1 "transition", even though many Type 2's eventually have to use insulin. Thanks for the verification (I won a bet on that one trying to explain to someone that use of insulin was not an indicator of Type :-)

    Hi Mommyof4 - I am very aware of the statistics, as well as the proper tests that confirm diagnosis. I happen to be a Type 1 diagnosed last year at age 38 and, knowing it is uncommon, was wondering if there were more folks like me on this board.

    Because of my age, my doctors thought I was Type 2 for over a year and I was treated thusly. Metformin, Avandia, Actos, Glyburide...tried them all till I was on maximum dose, triple therapy. It was only when nothing was working and I lost so much weight and got very sick that I was diagnosed Type 1 by an Endo. It was a shock to them that I was Type 1 at my age.

    So I was wondering about others who may have a similar story to share.

    Thanks to all for your input.

    Cheers,
    - Vikingirl

     
    Old 04-04-2006, 07:41 AM   #5
    Cora1003
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Hey VikingGirl. Folks like you are why they no longer call it "juvenile" and "adult onset" diabetes. What would you call it if you got it at age 90? "Senility onset" maybe? It's also unfortunate that a lot of docs just make an assumption when a simple c-peptide test would answer a lot of questions right away.

    How are you doing anyway? I was diagnosed when I was 2, so I had no real adjustments to make to my lifestyle. I've had 40 years of testing and shots (now a pump). I would imagine that it takes a while to get used to.

    Good luck to you.

    Cora
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    Old 04-04-2006, 12:22 PM   #6
    vikingirl
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Some call us "latent". Hey, I always was a late bloomer :-)

    It's been a struggle, to say the least, in trying to obtain some semblance of decent blood sugar control. I regret to say that despite incredible dedication and learning, I've not been able to obtain "maintenance level" control of my blood sugars. My last few AICs have me stalled in the 9.somethings%.

    I was put on intensive therapy within a few months of diagnosis and have made it a priority since diagnosis, to understand EVERYTHING I could about insulin, diet/nutrition, exercise, etc. I still keep a daily log of everything I eat, inject, exercise, etc. and at what times. I've read everything I could get my hands on and still do. (It's exciting to read what's coming down the pipe in the future.).

    I've been trying the low carb diet for the past month or so and have lost a few pounds. I can't afford to lose any more. So, it's the balancing act again. I need to make some adjustments somewhere. It's always a challenge but I can't wait to find something that works for me.

    Still working towards the pump but don't have the insurance or the $7,200 cash yet :-) It'll come.

    Thanks again for all the replies!

    Cheers,
    - Vikingirl

     
    Old 04-04-2006, 01:22 PM   #7
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Hi Viking Girl,
    While I personally am an insulin-requiring T2, I know several late-onset T1's. A couple of friends of mine were diagnosed at ages 38 and 60, and my mother was diagnosed at age 68. In my mother's case, however, it was because chemo had destroyed her islet cells. The other two people, however, both had auto-immune T1.

    Regardless of whether or not one is dealing with T1 or T2, it is always a challenge, and I believe it's much more so for those of us who are insulin dependent.

    Ruth

     
    Old 04-04-2006, 04:48 PM   #8
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Look into LADA. It's basically a form of type 1 that is diagnosed in adults with a slower onset than when it is diagnosed in kids.

     
    Old 04-04-2006, 07:09 PM   #9
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Well, I can't say that my experience is the same but I was diagnosed "late". I was 21, overweight, amd my sugar at diagnosis was only 268. They tried to put me on Glucophage and other oral agents but nothing worked. They finally did all of the blood work to show that I was a type 1. I guess there are plenty of people out there but I don't know of any exact numbers.
    I agree with Ruth, insulin is insulin and a pain to deal with no matter what the type
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    Old 04-06-2006, 05:52 AM   #10
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    I find the statistics interesting (for North America), that less than 12% of diabetics are Type 1 and of those, less than 1% were diagnosed after age 25.

    I'm wondering if some of the difficulties I'm having in trying to maintain sugar levels has to do with the age thing (not the number itself so much as the metabolic things that start happening around "mid-life"). Probably not but I'm just poking for info :-)

    I've eliminated so many things in my diet, cut my carbs to 24-36 grams/meal and, as a result, take much less insulin (my dietician is not happy to say the least but I said,"I've tried it your way now let me try something else".). I also eat at the same times every day, and snacks are almost exclusively 8-10 almonds or a yogurt (7 grams carbs). Why can't I get that AIC% down below 9+%?

    I'm getting very frustrated at this point. I'm wondering what would happen if I asked my doctors to put me on a less intense regimen so I can save some money and maybe have a life again. I know it would be going backwards a bit (or is it?) but after literally dedicating this last year to trying to get under control - to no avail - I want to live again. I want to stay positive but I'm afraid I'm getting much less so.

    Your thoughts, recommendations, and support always appreciated. Thanks.

    - Vikingirl

     
    Old 04-06-2006, 06:06 PM   #11
    Betty325062000
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    LADA that Blondy referred to has a twin sister, type 1.5. I think few doctors even know about these things. I am 72 and about 4 years ago I started having to watch my glucose. I am not overweight but having a diabetic kid has made me look out for such things. 2 Years ago I opted to go on medications as it was getting more difficult to keep acceptable readings. I had been eating low carb and that pretty well eliminates fiber. I started on Metformin and when that did not control I added Actos. Still problems so added Amaryl and Starlix, a quick short lived medication to cover meals. As familiar as I was with diabetes I had not heard of LADA or 1.5. Then I saw it on a post and started researching it.

    Type 2 is not an autoimmune problem, type 1, LADA and 1.5 are. Those last 2 are almost, but not quiet the same. I asked my doctor to do a GAD65, something he knew nothing about but he listens to me. A positive GAD65 is an autoimmune factor and that took my diabetes out of the type2 group. Actos has no effect on this type. Co-incidentally and not related almost at the same time (about 1 month) another doctor did a series of test looking for autoimmune factors. They all came back positive. That explains most of my other problems.

    I was referred to a Rheumatologist and found she didn't know about these things either. The doctor who had found all the autoimmune factors said I needed a more knowledgeable Rheumatologist. I now am waiting to see another Rheumatologist so the answers are not in yet. Most likely it will be found that I have Lupus, SLE or a couple other things.

    One word about these autoimmune factors that is not well known is that the results come back with numbers but the numbers are not the important thing. What is important is that positive or negative. It is like being a "little bit preganat", you either or are not and a high number is no better or worse than a low number.

    A search of LADA, type 1.5 or "what type are you" brings up lots of information on this. Type 1s usually needs insulin right away, type LADA or 1.5 usually progresses to insulin sooner than type 2. But since these glucose problems have a different cause they may need dirfferent medications. Knowing what type you are may or may not make a difference to you but I think it is best to know.

    If you are interested in knowing what other lab work besides the GAD65 could be enlightening I can tell you the ones I had.

    Getting controlled is difficult and in my estimation you are the only one that can know what it takes to keep the glucose under control. He's hoping the best for you.
    BVan (Betty

     
    Old 04-06-2006, 10:07 PM   #12
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    I am likely LADA. I had a very slow onset, noticing spikes in glucose a year before I was diagnosed. I was 19. But my blood sugars never went high enough to define diabetes. Finally in September of last year they did. I never did any oral meds. I opted to go straight to insulin, using carb counting. If all goes well, by this time next month I will be pumping.

     
    Old 04-06-2006, 10:57 PM   #13
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Contgrats on getting a pump. My daughter would not even consider one until the technology had evolved until she was comfortable with it. She loves her pump. Last week it "broke" and the overnighted her a replacement but she was without it for a couple days anyway. She only had fast acting insulin so she was having to shoot every 2 hours. Boy, was she glad to get that pump again.

    She works a job that scheduling regular meals and such is out of the question and this gives her much more freedom.

    I hope you enjoy yours too.

    I watched my glucose for a few years even and I was in my 60s. So mine has really progressed slowly. It could be that the older you are at onset relates in some way to how quickly it progresses to insulin. Slow is fine with me. I don't dread insulin and will not hesitate to start on it when needed.

    BVan (Betty)

     
    Old 04-07-2006, 07:45 AM   #14
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    Thanks so much for those last few posts, Betty & Blondy. (I hope you can get on the pump, Blondy. It's my goal, too. :-)

    I had, in fact, read all I could find about Type 1.5, LADA, MODY, as soon as I was diagnosed last year. My Endo referred to these terminologies back when so I researched them specifically. I also read much about diabetes statistics, in terms of: geography, ethnic prevalence, mortality, complication progression, association to other auto-immune disorders/diseases (I've been Hypothyroid for 20 years), and a whole lot more.

    I find the genetic history of diabetes quite interesting and the particularly recent research/studies trying to show a link that getting really sick (where your immune system goes into overdrive), triggers the immune system to start attacking the pancreas' cells - provided you were genetically predisposed. Some of what they're finding out is facinating.

    What you say is true, too, that I (we) seem to be more informed and up-to-date than our doctors. I truly appreciate how important it is to understand yourself and take control of learning what works best for you, using the tools and guidelines provided by the professionals. It would just be nice to come accross someone can work WITH you when you need them :-)

    For all that I've read, though, I've not personally or otherwise, met or could talk to someone with a similar background to mine. Therein lies my posted question :-)

    Thanks again to All, for the wealth of info you always provide. Love to hear from ya.

    Cheers,
    - Vikingirl

     
    Old 04-07-2006, 12:28 PM   #15
    Betty325062000
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    Re: Anyone Diagnosed Type 1 Over Age 35?

    It is my understanding that people over 35 with positive autoimmune markers are for all practical purposes type 1. It is just that LADA is the diagnosis for type 1 at that age. It is the age of onset that determines the name and otherwise LADA can be identical to type 1. That's like years ago type 1 kids were labeled juvenile diabetics.

    The genetics of diabetes is interesting. In 1969 when my daughter was diagnosed as juvenile diabetic I was told to keep a good eye on my son as he has a 50% probability of also having it. Then things progressed where they concluded that it was caused by a virus so that is not genetic so therefore has no bearing on his future. Now we are back to them saying it does pose a risk to him I have 2 cousins, a brother and sister that both developed diabetes as youngsters. That is the only such that I have ever seen.

    Have you been tested for the autoimmune markers and if so did you test positive?

    When my daughter was diagnosed I had been only vaguely aware that there was such a disease. Information was very hard to come by and the doctors didn't know what they were doing....they still don't. But one interesting thing I read has stuck with me, probably as true as anything said about diabetes. It said there used to be a disease called "the fever" that was totally baffling because it ranged for a little sick with full recovery, very sick with recovery, and some died. But with the invention of the microscopy all that changed as it was discovered that the only thing in common in these patients was an elevated temperature. Diabetes is elevated blood and urine glucose and the article said it will probably someday find that we are not working with A disease but like "the fever" could be just as different.

    In the last few years I am seeing it develop to that stage just as we now know type 1 and type 2 are actually 2 different diseases.
    BVan (Betty)

     
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