typical course of type one development

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shadowsmommy posted on Tue, Oct 19 2010 5:56 PM
I'm just wondering is there a typical course in development of type one? Some background info: I first detected occasional high post meal sugars (200s) with the peak at 30 to 45 min back in 2004 thru self testing cause I didn't feel "quite right" after meals. I consulted drs re this issue bloods drawn including fasting. Concluded I was "pre D". In 05 to 06 thru OGTT. Had another GTT in 07 which showed higher numbers inc FBG of 120 and 1 hour bg of 192 which normalized at 2 h mark. Was started on metformin cause of consistantly higher bgs at 2 h mark. (150 to 190 approx). Started to have more hypos (50 to 60 mg dl) wile on Met so it was stopped. Kept smbg per dr ordes. Was eatinh a higher carb diet at the time. Switched to lo carb when off Met to ward off hi bg. Had severe hypo in oct 08 (bg 30) followed by rebound hyperglycemia. Obtained new endo who put me back on metformin under assump thet I was type 2. Stopped again due to hypos. She ran some tests which showed B12 def and AB were all neg except for islet cell IgG which was flagged as slightly elevated. Around this time started to have some scary hi bgs some in excess of 500, which would drop fairly quickly most of the time. A1c has remaines wnl at approx 5.3 last check. Just had another round of AB tests w same results (all neg ecept for islet IgG AB) flagged as slightly elevated. I have lost 25 lbs thru eating better tho was never obese to begin with. No family hx of type 2. Gret grandma type one from what I understand- had one woking kidney at 17 ys of age (my great grandma, that is). Now my bgs are more stable at the moment due to diet and not as high as they were. Endo says she believes I'm early type one based on findings and the fact that I'm thin. I'm just wondering is this the typical course of subclinical type one? And could I somehow postpone the need for insulin thru good diet (my endo thinks so) indefinatly or at least for a good while? Could insulin be postponed for years even? Just curious. all replies appreciated.
Early Type 1-previously misdiagnosed as Type 2 Tourette Syndrome Renal Insufficiency Hypokalemia B12 Deficiency COPD HTN

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Madman replied on Thu, Oct 21 2010 10:27 AM

LADA (Latent Autoimmune Dieabetes in Adulthood) sounds like it might be fitting.  It is a slow progressing form of Type1.  I question the type 1 dx though since the AB tests came back negative.  You don't say which tests though, and there's more then one that  can be assoicated with DM...the usual being GAD 65, but there are others that can be tested for as well.

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My GAD has been negative thus far as well as the insulin AB and islet cell AB neg as well. Just the islet cell IgG AB keeps being flagged as slightly elevated (twice now). That's why I'm thinking as my endo does, that I may be a early or preclinical type one. Only time will tell as the AB levels could stay the same for years possibly. If that is indeed the case, then I caught the diabetes WAY early through observation of my BG levels and my symptoms. I don't know how common it is to detect it before it actually becomes full blown (type one). I'd be curious to see the statistics on that if that's even remotely feasible. Maybe I could google it. Hmmmmm.
Early Type 1-previously misdiagnosed as Type 2 Tourette Syndrome Renal Insufficiency Hypokalemia B12 Deficiency COPD HTN
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Madman replied on Fri, Oct 22 2010 11:10 AM

I would guess LADA based on your description.

Perhaps you can discuss LADA with your endo/PCP next time you visit?   It usually progresses slower then the typical T1, but the end result is similar.  One still ends up on insulin and dependent upon it.

I personally had a C-peptide test this morning.  Based on those results, an AB assay may be called for.  Regardless, I'm already on insulin and see no reason to change that.  My endo is thinking LADA or T2 that has progressed to the point my pacnreas just doesn't produce enough.  The c-peptide is more for her, then me.  All I care is that I stay healthy and keep my sugars under control. The treatment plan is pretty much the same between the two Dx's.

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BarbaraD replied on Sat, Oct 23 2010 1:01 PM

Sounds like LADA to me as well.  When I was diagnosed 9 years ago as LADA they told me there was evidence that supported taking a small amount of insulin daily in order to prolong the life of the beta cells. My doctor started me on 2 units of NPH a day. Good blood sugars also prolong the life so a healthy diet and exercise definitely helps.  My disease progressed very slowly, but I don't know if it was due to the early start of insulin or because I was an undiagnosed Celiac who wasn't absorbing much food.

Dx 2/01, pumping with Cozmo, Celiac, dx 8/05

 

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Well, its just sticking to the diet and monitoring my BG at this time. My sugars are not high enough to start insulin so I just gotta stick to eating right. And see the endo every six months.
Early Type 1-previously misdiagnosed as Type 2 Tourette Syndrome Renal Insufficiency Hypokalemia B12 Deficiency COPD HTN
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I'm thinking its a really slow developing type one.
Early Type 1-previously misdiagnosed as Type 2 Tourette Syndrome Renal Insufficiency Hypokalemia B12 Deficiency COPD HTN
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Hi!!!!    I am SO lonely now, it's not even funny....................I have been looking for someone like you for quite some time now........................you sound a lot like me, only my 2  hours readings have always been extremly high, except once in awhile they bottom down to 175-183 range......................my average fasting , when I am able to get enough to eat, as I am poor, is 220-440 range...............however, I also was on Metformin, as you also were, and it almost killed me.......................I lost 2 pints of blood from it, as it made me bleed from the belly internally, and it bottomed my blood sugars down and OUT into the 40s and 50s, it landed me in the emergency room, and I also had a light heart attack from a combination of factors, smoking , too much caffiene, stress, and the Metformin all combined. When I was four years old, my fasting was 160, they misdiagnosed me as prediabetic back then, so , I walked around for years misdiagnosed as a prediabetic, and now, I was diagnosed 3 years ago, and correctly, as early stage type 1 adult onset..................a year ago, my body would not let me sleep for 3 and a half days, I thought it was just severe insomnia,but by the 3rd day I felt really really really bad, so I went to the E.R., and they took bloodwork and the physician said my enzymes were off, and another # , I cannot remember the name of it, not the A1C, but it is a really really long name......something to do with peptides, or peptones, or something........it was the red flag.............mine were way too high......................but, another internist found me to be type 1 back at age 26, when I was literally more than half starved because I had my own apartment then and had been laid off of my job, I had only enough money to eat macaroni , and no meat, and I found out by accident that my A1C was an 8 and my triglycerides were 250................he wanted to start me on Humilin insulin right away...............I didn't get the prescription filled because, I thought it was only people under 18 that could develop type 1.................I was confused at the time, but the internist was excellent.....................Unfortunately, from 1996 all the way through 2007, I never ate supper, and I finally have 2 jobs now over the last 2 years, so I finally am able to eat supper for the last 2 years.......................so, my A1c actually bottom down up until 2 years ago,,,,,,,,,and, I almost went into a diabetic coma last year..............but, now, that I am getting enough to eat, I seem to be getting better.....................I'm in DIRE need of SOMEONE that can PLEASE relate to MY TYPE ( early adult onset type 1), as I now get below minimal treatment at my new doctor, because they see how low my A1C WAS, and, BOY, not that I WANTED to become a type 1 at all, but the reality is is that I am, but, yet, I'm still getting treated like I am a type 2, in fact, the new doctor, who I have only seen once, his secretary made a big error on my records , they failed to have the records from my internist ( who I left because I couldn't afford him anymore)-----------they failed to have the records transferred over, so they said I am not even diabetic.......nothing could have been worse............................then, I went over to that old internist's building got the written proof that I was officially diagnosed in 2006 , and took it to the new doctor, and now I have bad bad vision problems, as I was in the emergency room the other night with my vision problems..........spotty vision and distorted vision..........my blood sugar there was 224...........then, it dropped  to 144 after being in the E.R. for approximately 3 hours................wierd.....................I have a wierd pancreas I was told...................I'm not confused anymore.........................it's been established what type I am, but, because I was poor for so long, I made the big mistake of not seeing any doctor at all for a whole 2-4 years-----------I will never make that mistake again...................hope this all helps..........write me back!!!! I am lonely, VERY lonely, because most type 1 people probably will not understand me, as most of them were juvenile type 1, they'd probably laugh at me, thinking.............huh..........she is so healthy for a type 1, YET, everytime I go into type 2 sites, I've already been through all of that.............................and I have multiple problems with vision , etc, and extremly high post meal readings...........in the 300s and 500s on a regular basis.............sometimes it registers so high, that it's out of my machine's range, BUT, because I am a healthy type 1 ( adult onset), I am very very fortunate, as I still have ( I found out ) some beta cell insulin production, but very little..........the doctor said I have lost approximately 93-98% beta cell function.......................so, as an adult type 1, I actually have it pretty good in my book...............PLEASE write me back...........I am DESPERATE for someone that can relate to me on this type!!!!!!   Everytime I go to talk to someone , they are regular type 2, or they had juvenile type 1, neither which I can relate to..............GOD, is there SOMEBODY OUT THERE?--------------ANNE

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BarbaraD replied on Sun, Oct 31 2010 9:17 AM

Hi Anne:

I am like you, an adult onset type 1.  Do you take insulin?  It sounds like that is what you need.  The medications for a type 2 don't help type 1's.  It sounds like your blood sugar numbers are way too high and you need to see an endocrinologist asap to get on insulin.

Write back and let us know how you are doing.  This is a great site to get information.

 

Dx 2/01, pumping with Cozmo, Celiac, dx 8/05

 

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Hi..........................I am so glad I found someone that can relate!!!!!    Thank you .........................right now, I can't take insulin, because, due to being in the emergency room again for bleeding peptic ulcers, and not getting enough complex carbohydrates over the last 6 months, my A1C is too low for that right now.....................it's only 6.0 right now......I found that out about a month ago..............I'm happy as a clam it's that low, as it was an 8 a long time ago along with very high triglycerides, but, the one unit that was advised by my former diabetic internist I can see why, as he said after I go over a 6 at all on the A1c, I need just 1 unit of insulin a day..............now I agree with him completely, because, everytime I go over 6, my vision is distorted and very very very spotty.............................Thanks again, and , hope you're having a great day!!!--Anne

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Hi............I am really sorry I took a whole 4-5 months to reply..............I work 60 hours a week, and had to pay some big bills over the last few months...............yes, thank  you for your reply.  My A1C actually took a huge dip ever since I was given insulin in the emergency room......the reason being because I am just recently ( over the last 6 months) able to get enough money to eat supper..........now, my readings are coming way up, but, believe it or not, I feel better when mine are high...I mean, when my numbers are between 182 and 192, I feel really really good........it's the lows my body does not handle well at all......the E.R. guaranteed me I needed some insulin everyday three to four times over the last 5 years.......I fell so low after they put me on Metformin, that it was atrocious........but, when they gave me insulin after my sugar shot up to 701 one night, the insulin nicely put me back to 144........I don't need a lot of it, but I can definitely see I need it, because I have vision problems everyday now.   My numbers, when I eat 3 meals a day, are between 320 and 500. I sometimes go up to 600 and 700......I have an extremely high acid stomach, however, and it has actually been my saving grace from some of my highs.......high acid breaks down high sugars at a pretty high rate.........but, now, I've had a bleeding ulcer again, so , I have no choice but to knock my acid intake down significantly, which means my blood glucose will go up again........I rarely go low now......the only time I go low is : (a) if I had pure coffee on an empty stomach for breakfast, and didn't eat any breakfast or (b) If I starve all day and then eat high acid at night......then, YES, I go REAL low, and I have a diabetic seizure..........if I have a virus with a fever, and I eat as normal, or close to normal, my sugars SKYROCKET, they SOAR, .......for example, if I have a virus with a fever at all, my average 2 hour reading is between 340-600.........but, if I carelessly drink too much high acid and caffiene at the same time while I have a fever, I get severly severly dehydrated FAST, and in the middle of the night while I'm sleeping I have a low blood sugar seizure, and they are a NIGHTMARE.......I mean, I finally learned my lesson on those............no more skipping meals for me........those days are OVER............my body does not handle lows well at ALL...........in fact, it's downright scary when I have a seizure like that.................since I still have to bump down my high acid stomach, and continue to improve on making sure I don't skip supper, then, I go on insulin in the near future, but, unfortunatley, because I was so poor for 7 whole years, eating zero supper for that entire time, my body actually needs probably at least 6 more months to come "up" from the starvation.............I did some more research on that, and , that means I was operating on what they call a LOW pilot light for 7 whole years.......BAD...........NOT GOOD.............so, now, I'm just going to keep eating 3 meals a day, and I am so relieved I'm not eating just 2 meals a day now.........unfortunately, though, I may need the insulin again sooner than I think, but definitetly now right now............my last a1c was only 5.9, because, I had more internal bleeding along with still zero supper for a few months..............since when I eat normally my sugars average 320-500, and something about my C-peptide and hormonal being WAY off a couple of years ago, combined with this TERRIBLE virus I got when I was 8 years old ( I got a severe severe virus when I was in third grade, and it almost killed me---high fever, etc.........my body was NEVER the same after it)........all this stuff is what happened to me.......WRITE ME BACK!!!!!!!!!   I'd love to hear from you................there are so few people that seem to be able to relate to me......I'm LONELY..............everybody else is a type 2..........I was diabetic as a child, it has been/was proven............but, since my fasting blood sugar was 160 when I was six years old, the doctor back then said he wasn't sure if that was a diagnosis of diabetes or not..............I was born in 1970, had severe symptoms of diabetes from age 4 on up.......but, the doctor I had then said he was positive I as diabetic, but he never actually diagnosed me until I was 16, and he was scratching his head , because he was a general physician, and he admitted he had a big problem with diabetes.........so, here I am today,.....glad I am 40 years old, and not 80 or 90........The E.R. physician guaranteed me more than once I am a type 1, and they gave me insulin in the E.R..........that was 4 years ago, and they had a prescription for it waiting for me , but I stupidly didn't return to the E.R. to get it when my symptoms returned, and I had 3 or 4 more seizures when I didn't return that night........I didn't go back to get the prescription because some idiot former friend of mine misinformed me BIG time......and, so did some other abusive people I used to know............yeah, they told me that a diabetic ( no matter what type they are) NEVER goes low at ALL.........SO, I believed them, now I know the truth.........AND, yeah, I'm still sitting on a lower A1C, ............WRITE ME BACK!!!!!-------ANNE

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Hi..........I apologize, as it is March 25th, 2011, and you posted about your early type 1 in October of 2010........I was diagnosed as untreated childhood diabetes......and type 1 -----I got a really really really bad virus when I was 8 years old, and it almost killed me..........I had a very very very high fever with it, and I was out of school for almost a month with it...when I returned to school, I was never the same...........I almost passed out in the hallway one day, and a third grade friend of mine had to run and go get one of our teachers...........I had ( it's been proven) untreated childhood diabetes, and what they would call very low end type 1 as a child, .......I had seizures at home that actually started when I was 2-3 years old, and my grandma saw them, but she didn't speak English, as she was from another country, so she was never able to fully get the message to my parents.....in the meantime, I was extremly shy between 1st and 8th grade, so I would lie to the teachers and tell them I felt really healthy..........my childhood pediatrician smelled extremley strong sugar on my breath multiple times, along with a fasting sugar of 160,,,,,,,,,so, I went years without being officially diagnosed......now, they found the truth as of age 36.............I was given insulin in the emergency room at age 35 , and I was finally diagnosed ( not that somebody wants diabetes), but, I was finally diagnosed at age 36 as type 1, but not LADA, as it sounds like is your case, but yours is very similar to mine.............in my case, they said I was honeymoon type 1 for YEARS.......which is very very RARE........I was honeymoon type 1 as a child , and am now type 1, but, because of internal bleeding, and not eating supper for 7 whole years, my a1C actually dropped way LOW, after METFORMIN ALMOST KILLED ME..............it set me into low after low after low.........DOWN IN THE 50S , then I ended up in the E.R......this was when I was 35, five years ago, and my sugar went from 58 up to 701 after they had to give me glucose shots to raise it from the Metformin low, and then they had to give me insulin to lower it from the 701.........they said a type 2 would NEVER have had this happen to them, and that I need a little bit of insulin everyday.............they wrote me out a prescription for it, but, I was afraid to go back and get it, as I was misinformed by a former friend of mine, who I no longer speak to at all,.......and I was also misinformed by a few others, and I never went back to get it filled yet...............now, my blood sugars range back to 320-600 when I eat 3 meals a day, BUT, I certainly cannot get more insulin right now, because my A1C fell again because of internal bleeding and other extreme causes.........I feel TERRIBLE when I am low, but I RARELY go low now...................MAYBE THIS WILL HELP YOU.......I AM POSITIVE YOU ARE LADA.........WHICH IS TYPE 1...............WRITE ME BACK!!!!!!!!!!!!!---------------ANNE

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zrebiec replied on Sun, Mar 27 2011 9:04 AM

I am not sure if you can access it online but here is a excellent research based reference about the course of type 1 diabetes:

"Modern Day Clinical Course of Type 1 Diabetes Mellitus After 30 Years' Duration": The Diabetes Control and Complications Trial / Epidemiology of Diabetes Interventions and Complications / Pittsburgh Epidemiology of Diabetes Complications Experience (1983-2005).  Archives of Internal Medicine; 2009; 169 (14): 1307-1316.

www.archinternmed.com (October 13, 2010)

 

John Zrebiec, MSW, CDE

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lb1109 replied on Sun, Oct 30 2011 5:29 AM

Here are some articles about diabetes, and I hope to help you

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