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Question about Adult T1 Diagnoses

Discussion in 'Adults with Type 1' started by BozziesMom, Sep 3, 2008.

  1. BozziesMom

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    Just curious! By what age are adults with T1 generally dxd? Is it by age 30 or is that stuck in my brain for no good reason? How old was the oldest person dxd with T1?

    Thanks!
     
  2. hypercarmona

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    My greatgrandmother was diagnosed with "juvenile" diabetes when she was in her mid-60s. It happened before I was born, and so I don't know too many details but I remember later being told (after I was diagnosed) that she was immediately put on insulin injections because her BGs were so high. Her diagnosis looked a lot like what mine did from what I was told. My CDE told me about her oldest type 1 patient so far at my last appointment. She said he or she is 73 years old. She had to keep running in and out of my appointment because she was on the phone with the hospital about this other person, who was still having serious problems getting regulated apparently. From everything I've read, it can happen at any age, though.

    I just "celebrated" my 12 year anniversary with the big D this past weekend, but I was diagnosed as a teen, not as an adult. So I can't offer too much help from my own point of view. :eek:
     
  3. kel4han

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    I have read somewhere that typical adult onset Type 1 is in the 20's or earlier 30's.

    My dad was 32, I was 28.
     
  4. clb1968

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    I was 21. I think it is becoming more common for older people to be diagnosed with type 1, but alot are misdiagnosed type 2 at first , because they think (doctors)that it is a adult disease and type 1 is children's disease.
     
  5. Connie(BC)Type 1

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    I was dx'd in puberty, but my personal, not scientific opinion, is a lot of young and middle aged adults are dx'd as type 2 incorrectly.
     
  6. TheFormerLantusFiend

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    I read that menopause can trigger the autoimmune process, and trialnet will screen people up to age 45 or 50 (forgot which since my parents are older than 50) and they stop at that point because they don't want to get confused about which type, not because it can't happen. The Finnish study that looked at siblings' chances of a T1 diagnosis followed the siblings to age 50, I think.

    It can happen at ANY age (maybe with the exception of two days- I'm not convinced that anybody diagnosed in the first month has true t1 rather than some other form of diabetes) , the likelihood just goes down and down, with major stressors causing a little rise in incidence, and doctors less willing to find out which type it might be.

    In the end, I don't think the diagnosis would matter so much if doctors were more willing to start people on insulin with less prompting.
     
  7. lilituc

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    The oldest I've heard was someone in their 80s. I think the major barrier to good data is as mentioned - there is such a tendency to misdiagnose it because everyone knows Type 1 only happens in children. :rolleyes:
     
  8. KeltonsMom

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    I was dx'ed @ 42 and my Dad was dx'ed at 45..There is no age limit..
     
  9. BozziesMom

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    We meet again! :) How in the world did you end up getting dxd? Love to hear the story.
     
  10. buggle

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    When we were at my husband's appointment last week at the adult clinic at Barbara Davis Center (only treat type 1), the doctor said that they see many people in their 40's, 50's and recently dx'd a woman who is 65.

    When I spoke on the phone with the CDE, she said that have lots of older and middle-aged patients with new onset. The endo called the older, slower onset T1's LADA and the faster onset Type 1. But, I pointed out that Type 1 isn't always a very fast onset. Our son had a very slow onset and he's 8.

    I agree that many, many people are misdiagnosed as T2's when they're really T1. Because it tends to come on slowly in older people, they may do reasonably ok on metformin for several years. If someone is over 30, I think the vast majority of docs would just assume that anyone with high BGs is a T2. Most doctors probably don't even know that adults can get T1.
     
  11. BozziesMom

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    Well that's scary. :eek:
     
  12. Brensdad

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    Gee, this all sounds so familiar!

    I was 25 and was sent home on glyburide. Thank God I have a smart wife that saw it wasn't working, and my primary physician diagnosed me T1.
     
  13. funnygrl

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    I was diagnosed at 19. Labelled "pre-diabetic" and sent home on a low carb diet, then type 1 and started on insulin, then type 2 and kept on insulin, then after an uber low c-peptide, they settled on type 1 for good.
     
  14. tedgar

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    I was dxd at age 28, while pregnant. It's my belief that a lot of women with later-onset type 1 have it triggered or exacerbated by pregnancy. If your pancreas is really struggling, pregnancy is a good way to make life difficult for it!

    And yes, my endo did not believe that I could be type 1, since I presented as diabetic while I was pregnant. He tried me on no insulin for 2 weeks after dd's birth until the nurses and I insisted on insulin because I was very sick.

    Tricia, t1 dxd April 05
    Dd Lauren, age 3.5
     
  15. silversheen

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    I'm an adult, age 43 and in the mist of being diagnosed type 1 or Type 2. (rapid onset - less than 6 weeks)
    Diagnosed as tp 2 in 2007

    Started on metformin/ didn't work /combo'ed w- gliclicide /worked for about a year (kinda) until I developed a lung infection-asthma

    The locum started me on steroids and my bg= low teens + yo-yo.

    Started on Byetta /as usual worked great / then nothing/ gliclicide was stopped and Novonorm started / bg = high 20-30. I was right back where I started.

    really sick/lost 5lbs+/3k in a week! / continually losing weight since diagnosed / now on Insulin / being tested for coeliac dx, anemia and several other dx.

    I'm very frustrated with the whole process and was directed to this board from an expats site where I was venting about being diabetic. :eek:

    It's nice to know I'm not alone!

    Smiles, Silversheen
     
  16. sarahspins

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    I was diagnosed during my first pregnancy (I was 19) and all the doctors were firmly convinced that the ONLY possibility afterward was that I was a type 2 since I had been labeled a "gestational" diabetic. No one would listen to me or consider any other possibility and it was SO frustrating.

    I really felt trapped in this "if you're over 18 or diagnosed while pregnant you CAN'T have type 1" myth, despite the way that I had presented, which was caught completely at random - I mean, I was pregnant so they had already done bloodwork at the beginning that was totally normal, my urine dips were always normal, and I wasn't really having any symptoms at all. It was actually a metabolic panel done by my perinatologist to get a baseline to watch for any changes relating to the BP issue I was having, and that showed a blood sugar in the 500's! They actually asked me to do a GTT after that, if you can believe it... I think anyone reasonable would have just skipped it. I monitored my blood sugar over a weekend before starting on insulin, and my numbers were all well over 300. I did pretty well throughout the rest of my pregnancy though... I even learned to adjust my insulin doses so I wasn't constantly waiting on a call back from my doc to tell me to do what I knew I'd need to anyways... and I made it through Thanksgiving and Christmas quite easily by carb counting :)

    Following my first son's birth though, and struggling with getting a correct diagnosis, I was taking insulin on my own to correct highs (and I was only correcting anything over 250 - it's not like I was being super aggressive or paranoid, it's just that I felt HORRIBLE, and that was the only way not to), and I had a fight and find a doctor to do antibody testing to finally be "allowed" to go back on insulin (I got yelled at by an internist for "self medicating" and not giving the oral drugs a chance work.. what were they going to work with, exactly?). It was quite frustrating, and over just two months, my a1C went from 7.1 at the end of my pregnancy (was 8.4 when I was diagnosed) to almost 9. It really seemed like all that wanted to do was push the oral drugs and not just give me the one thing I needed.. so I fired that doctor and found another.

    After I was given the "okay" to start taking insulin again (and that coincided with Lantus hitting the market in May of 2001, so no more yucky NPH for me) I had a lengthy honeymoon period, and I started pumping at the beginning of 2002 because it was clear I needed different basal coverage than Lantus could give me (I would completely crash in the afternoons, bad - lots of lows on the 30's).
     
  17. buggle

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    I'm glad to see you here posting, Silversheen! :)

    I think your onset is pretty typical for older adults. How's your control since you're on lantus and novolog? How much are you taking -- what's your carb ratio for novolog?

    Did you guys know that Elizabeth Perkins was dx'd as type 1 at age 44? I saw this article about it the other day.

    http://www.diabetes.org/uedocuments/df-perkins-0208.pdf
     
  18. silversheen

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    Hi, what a great article about Elizabeth Perkins. I can certainly identify with parts of it.

    My control is going very well although I'm having loads of hypos. I'm taking 4-6 units in the morning, cut out my noon insulin, and taking 6-8 in the evening and taking 16-18 of Lantus. I'm still having hypos so I'm still actually cutting my dose down.

    I eat 30-40g carbs in the morning, 20-30 at lunch, 15-20 for snack, 30-40g for tea and then 15-30 for snack. Most of my carbs come from things like yogurts, apples, bananas, veg soup, etc... I don't eat much bread.

    The dietitian say I'm one of her healthiest eaters and best carb counters she's ever had. I don't know whether that's a true compliment or not. :cwds: She has upped my carbs from 30-90g a day to 100-150+ a day.

    However, since I've been taken off byetta and started on insulin I've gained about a stone (14lbs) I'm now watching my calories as well as my carbs. It doesn't want to come off. thou. :mad::(

    They are telling me I can't take Byetta because type 1's aren't treated with it. :confused: Once they decide for sure what I am then I'll know if and when I can start back on it.

    Smiles, Silversheen
     
  19. buggle

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    Have they mentioned honeymooning to you? After people start insulin, it can give the pancreas a break and the beta cells often perk up and start producing insulin again. So, you can see lows and may have to cut back on your insulin.

    You probably lost some fat and muscle mass before you started insulin. So the weight gain could be your body trying to repair itself.

    Have they run a C-peptide test on you? That will give you a lot of info about whether it's T1 or 2. Sure sounds like adult-onset T1 to me. With your history of other autoimmune conditions, I think it makes it more likely.

    We have quite a few parents here on CWD who were diagnosed as T1 after their kids were dx'd T1. It happens to more adults than you'd think.
     
  20. silversheen

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    Hey Buggle,
    I saw the dietitian again, today. She is estastic over my diet but concerned with the yo-yoing of my bg (usual for me) and the hypos. So, I get to see the doctor next week. They did mention honeymooning!

    I will ask the doctor about the C-peptide test and if they ran it on me. I'm curious to know my results if they did. However, the dietitian only talks about type 1 so I'm sure I know what she think I am. :cwds:

    I'm crossing my fingers and toes that my children do not inherit this dx. If they do say I'm type 1 I think I may have my wee girl go for a check-up. Isn't' there a test to check to see if she may be genetically inclined to get this?

    Anyway, off to fix tea! Hope to see ya on the xp forum, too!

    Smiles, Silversheen :)

    Whoops forgot to mention, they are considering letting me go back on the byetta if I can the hypos can get sorted, which will help w/ the weight issue.
     
    Last edited: May 15, 2009

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