I AM 39 WAS TOLD ABOUT MY DIABETES IN 1988 AND WAS TOLD IT WAS TYPE 2 NOW MY ENDO SAYS IT IS TYPE 1 EVERYONE ELSE IS STILL CALLING IT TYPE 2
HI SUE THIS IS CHERYL I WPULD BE VERY INTRESTED IN FINDING OUT WHAT YOU FOUND OUT THROUGH THE SUPPORT GROUP LET ME KNOW
I have written about this in another thread, but it bears repeating because so many who acquire Type 1 diabetes as adults are misdiagnosed as having Type 2, based solely on age, not etiology. Also, a commonly stated myth is that in Type 2 diabetes, insulin production by the beta cells declines over time (the cells “burn out” as one person says here). But this is not true, according to “Latent Autoimmune Diabetes in Adults: Definition, Prevalence, Beta Cell Function and Treatment” in Diabetes Vol. 54, Supplement 2, December 2005. In that article, the authors point out that if you remove people with autoimmune markers for Type 1a diabetes (aka slow onset Type 1 diabetes in adults almost always misdiagnosed as Type 2) from studies of Type 2 diabetics, “beta cell function was unaffected and preserved 12 years after diagnosis among individuals without islet antibodies.” If patients with LADA are appropriately removed from studies looking at beta cell function in Type 2 diabetics, there is no decline in production of insulin in the true Type 2 diabetics. [People with LADA are antibody positive and have Type 1 diabetes, according to the Expert Committee. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus states, “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.”] The Expert Committee does not include a category of LADA or Type 1.5: if you are antibody positive, you have Type 1 diabetes. Type 2 does not become Type 1, but if you are misdiagnosed you never had Type 2, you were just misdiagnosed. Sad that so many of us are misdiagnosed–I believe it is malpractice. Antibody tests are cheap ($479 at full price) compared to the repercussions of misdiagnosis, why aren’t they used more to get a definitive diagnosis?
Hello everyone!
I felt the first symptoms on 2006, but i didn´t care `cause everything seemed to be normal.
I also experienced problems with my feet , fascitis plantar (other related story)
I was officially diagnosed in January 2008, feeling almost all the common symptoms. HbAC1: 9x.
blood sugar: 300. Immediatly i decided to face diabetes following a very strict routine of excercises (stretching), eating healthy, controlling blood sugar, taking my medications (Metformin and Glimperimide), etc. …
Each day i was getting better, but i was losing weight and feeling tired. So i asked to my doctors; Hey what´s going on? (i went to three endos). I spent tons of hours surfing the web gathering and reading as much information as posible and finally some articles (diabetesvoice, etc) described my new sypmptoms.
It was and odyssey to find the right doc(endo). Finally i found the right one, and both agreed to take antibodies exams.
The Results: ICA: 0, IAA: 0 Anti-GAD: 10 (normal range: <5) so i´m LADA.
The treatment with oral medications changed, nowadays i`m taking Januvia, Actos, sometimes Enterex diabetic, and Centrum. My hbAC1 is :6.2 and blood levels between 90-120 aprox. I think i´m under control.
My endo consider innecesary to take C-Peptide exam because of my results. My meal planning changed: i started with 1625 calories (March 2008), on May 1800 calories , and finally 2200 calories.
My questions, my doubts:
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Do i really need to take C peptide exam?
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I have read that some docs prefered to prescribe insuline if diagnosed LADA because it preserves beta pancreatic cells. Opinion?
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I feel astheny, sometimes a lot.
At the beginning, daily physical exercise, including 30 min of long walks decreased astheny.
Nowadays there´s nothing i can do to avoid astheny and drowsiness. Now i´m trying PNL to fight astheny. -
Stress
Does stress affects diabetic people (with or without lada)? -
Sometimes i got depressed. Is it normal in diabetics?¿? (with o r without lada)
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Did u considered the possibility to change ur job because of diabetes?
Ok guys that´s all. If u find similarities in ur symptons please let me know.
All comments are welcome.
C-ya!
If you search some of the other discussions you might find that many/most of us with LADA use insulin, rather than oral medication.
Question;
Does anyone here know the difference between a GAD or diabetes related antibody test and an ANA, antinucear antibody test?
Reason I ask is because my NEPH ordered that and a sed rate test when I had to start seeing a kidney specialist who assUme-s my kidney problem is diabetes related.
&^& GOMER
i found out i had diebetes from my doctor he said i had type 2 .after a month the medication was not working so he sent me to a specialist they did tests. i was losing lots of weight and i was already slim i was 43 years old well the new doctor told me i make no insulin and i am type 1 she said you have what they call type 1.5 or lada. i now am on insulin 3 shots of humalog and one shot at nite lantis and i will soon be getting a pump.
Hi! Ditto on the LADA. I was diagnosed at age 43 immediately after a hysterectomy. I was home after the surgery and slept all the time so I went back in to the doctor. My blood sugar was 1032. I was diagnosed and started on insulin that same day. Insulin was not my friend. My husband gave me so many glucagon injections. I died from hypoglycemia and had to be
defibrillated and intubated. I was hospitalized in ICU on a ventilator in a coma for a week and the neurologist told my husband to think about institutions because I would probably be permanently brain damaged. I had to quit my job as a drug rep shortly after diagnosis because I kept going unconscious while driving and getting into car wrecks.After six years of LADA at the ripe old age of 49, I got a new pancreas. That was June 17, 2008 so I’m not quite 4 months out. I feel fabulous!
And my blood sugars are great. No insulin or any other diabetes meds because I’m not diabetic anymore. I’m going back to work. I run 4 miles a day and lift weights so I’ve almost lost my insulin weight gain. I was quite thin at diagnosis which is typical of LADA. Well, the best to you! Take care! Colleen Myers
Hi -
I’ve been doing research on this forum for a while but this is my first post. Just looking for some advice but let me first give you my “story”. I had gestational diabetes when I was pregnant 6 years ago. Lately I’ve been getting up to go to the bathroom a lot during the night (3 to 4 times, plus first thing when I wake up). I’ve also had a lot of fatigue, no energy, etc. I decided several weeks ago to check my blood sugar 2 hours after I ate (I rarely check my sugar). It was 159. I thought that was a little high so the next night I checked it two hours after I ate and it was 254. It was a Friday night and I kind of freaked out. My strips were expired so I ran out and bought a new meter, the One Touch UltraMini, new strips, etc. I set it all up and tested the meter and my sugar was 224, this was 2.5 hours after I ate. It was still 236 at 3 hours post meal.
I went to the PA at my GP’s office on that Monday and she didn’t seem concerned but ordered an OGTT. It came back with a normal A1c, normal fasting but at the 2hour mark it was about 170. She said this was “pre-diabetes” and I should come back in a year. I didn’t feel comfortable with that and talked to a friend who was put on insulin in the very beginning stages of what she found out to be LADA after a c-peptide and GAD65. She also has a 13 year old that was diagnosed with diabetes at 18 months old so she’s very knowledgeable. She was diagnosed with pre-diabetes from an OGTT and her sugars weren’t running as high as mine but they still put her on insulin after the tests that confirmed LADA.
My fastings used to always be in the 80’s, now they’re in the 90’s (99 today). Post meal is all over the place, anywhere from normal to 195. I’m thin (like a size 2), no family history of diabetes. I have an appt with an endocrinologist on November 6th and while i do NOT want to be on insulin, I’ve heard that starting it even in these very early stages of LADA can be tremendously beneficial for the long term.
My question is…do these numbers sound concerning? Does it sound like LADA? And is there anything specific I should request or mention to the endocrinologist in a couple of weeks? The endo was recommended and she’s fairly young - I hope she treats aggressively!
Thanks for any advice.
Hi -
I’ve been doing research on this forum for a while but this is my first post. Just looking for some advice but let me first give you my “story”. I had gestational diabetes when I was pregnant 6 years ago. Lately I’ve been getting up to go to the bathroom a lot during the night (3 to 4 times, plus first thing when I wake up). I’ve also had a lot of fatigue, no energy, etc. I decided several weeks ago to check my blood sugar 2 hours after I ate (I rarely check my sugar). It was 159. I thought that was a little high so the next night I checked it two hours after I ate and it was 254. It was a Friday night and I kind of freaked out. My strips were expired so I ran out and bought a new meter, the One Touch UltraMini, new strips, etc. I set it all up and tested the meter and my sugar was 224, this was 2.5 hours after I ate. It was still 236 at 3 hours post meal.
I went to the PA at my GP’s office on that Monday and she didn’t seem concerned but ordered an OGTT. It came back with a normal A1c, normal fasting but at the 2hour mark it was about 170. She said this was “pre-diabetes” and I should come back in a year. I didn’t feel comfortable with that and talked to a friend who was put on insulin in the very beginning stages of what she found out to be LADA after a c-peptide and GAD65. She also has a 13 year old that was diagnosed with diabetes at 18 months old so she’s very knowledgeable. She was diagnosed with pre-diabetes from an OGTT and her sugars weren’t running as high as mine but they still put her on insulin after the tests that confirmed LADA.
My fastings used to always be in the 80’s, now they’re in the 90’s (99 today). Post meal is all over the place, anywhere from normal to 195. I’m thin (like a size 2), no family history of diabetes. I have an appt with an endocrinologist on November 6th and while i do NOT want to be on insulin, I’ve heard that starting it even in these very early stages of LADA can be tremendously beneficial for the long term.
My question is…do these numbers sound concerning? Does it sound like LADA? And is there anything specific I should request or mention to the endocrinologist in a couple of weeks? The endo was recommended and she’s fairly young - I hope she treats aggressively!
Thanks for any advice.
EsMom-
I am not a Doc, here is what I think. Your post meal bg’s are pretty high; I think that’s an issue. LADA can be treated with oral meds, diet and exercise but your pancreas will stop producing insulin, you will have to be placed on insulin.
I had the same thoughts as you, “I don’t want to me on insulin.” but when it came down to it, I had no choice. I could either be on insulin or continue to run my pancreas and risk chances of complications. I didn’t want to do either. I decided on insulin, started out on MDI’s and now I use the pump; I love it.
I understand you PCP is knowledgable but with you post meals bg’s I would see someone else for a second opinion. You did a great thing by scheduling an appointment with an Endo. LOL, I know she is young but I’ve learned one thing about age, knowledge and diabetes…LOL, age isn’t anything but a number. Write your questions down and take them in with you. Like I always say "If you don’t care about your health, who will?"
I am curious to see how your appointment goes. If you don’t mind please keep me updated. If you need help with questions to ask let me know.
Cherise
Thanks for your quick reply! I’m actually glad I’m meeting with an endo that is young (not to discriminate against the older endos but I keep hearing that SOME aren’t as aggressive with treatment). If they want me on insulin I’ll gladly go on it if it’s what they think is best. Have you ever heard of someone going on insulin at the stage I’m in, kind of early in the process? I know my friend did but I know all docs are different! My sugars seem to be okay with very little carbs so perhaps I can get by on diet for a while. We’ll see! I’ll definitely keep you posted. I’m so anxious for this appointment in a couple of weeks!! : )
Hi EsMom–It does sound like you are in the early stages of Type 1 diabetes (LADA). For many many women, pregnancy is “the straw that broke the camel’s back” and puts them into full-blown Type 1 autoimmune diabetes. It would probably be beneficial to get a c-peptide test and antibody testing (not just GAD65 but all three). And basically, the earlier you go on insulin the better. Medical studies have conclusively shown that tight glucose control, using insulin, prolongs the “honeymoon” period and reduces the likelihood of complications.
Hi Melitta -
Thanks for the info! I’ll make sure I ask for all three tests. My sugar was 189 two hours after lunch today and still at 162 three hours after. I know those aren’t incredibly high numbers but I still don’t feel comfortable with them. I did have rice at lunch so I know that’s what caused the spike! So one question for you, let’s say the tests do point to LADA for me and I can keep my sugars down by really cutting carbs…do a lot of doctors still want you to go on insulin to preserve your beta cells?
Thanks!
I had gestational diabestes and when the baby was 18months old I wasnt feeling right, had my first ever yeast infection that would not go away, checked my sugar, almost 400, I was shocked, didnt even know it could get that high. doc said I had type 2. went on meds for awile and it was good for awile and then the sugars went way up. Finally after 2 years of playing the medicine game I went to an endocrynologist and she did a few tests and confirmed I was 1.5, LADA, type 1, whatever you want to call it. Been on insulin ever since with pretty good control.I also have hypothyroidism and anemia, I am an endocrine mess. I hope your test give you a confirmed result, whatever they are it is managable.
Hi EsMom–Basically, yes, if you have autoimmune diabetes you should be on insulin. That’s how to best preserve your remaining beta cells. Good luck!
Wow, your story is almost the same as mine. In sum: I have no family hx of diabetes, am active and fairly thin, so my DX of gestational diabetes was little weird. About 6 months after I had my baby, I decided to check my blood sugar. I tested around 300 about 2 hours after eating a burger and fries. I called my PCP, who reassured me that I did not fit the profile and likely was not diabetic. My glucose tolerance test said otherwise, though, and he DXd me as type 2. I went on a low carb diet, which helped, but I couldn’t keep my blood sugar down unless I virtually eliminated ALL carbs. Metformin and Januvia, likewise, didn’t help. I’ve had a C-peptide, it was low but indicated I’m still producing some insulin. Now, I’m DXd as 1.5 and I’ve been using a basal insulin for about 5 months. It made an immediate difference, although I still have to really watch my carb intake.
I recommend either talking to your PCP about additional testing or going to see an endocrinologist. Although you may be hesitant to use insulin, I’ve found that the insulin pen injections actually hurt less than the many finger pricks from testing. Insulin also may preserve any remaining Beta cell function (hopefully prolonging the honeymoon pahse). Good luck…keep us posted!
Thanks for sharing, Summer! It seems that my sugar stays very normal when I eat low carb but as I understand it, if I’m Type 1.5 a basal insulin would help preserve beta cells even if diet can control the spikes. Is that accurate? I have an appt on November 6th with an endocrinologist where I plan to request (demand) a C-Peptide and Gad65. So another question that you may know the answer to…with only a dx of pre-diabetes now, could this actually be the honeymoon phase of Type 1.5? I understand that with type 1.5 you either have it or don’t, that’s there’s no “pre” phase (either in honeymoon or not).
I recently read that it’s very unusual for anyone thin to get pre-diabetes or Type 2 except in certain ethnicities. Anyone else know much about this? I can’t wait until my appt with the endocrinologist - I’m driving myself nuts right now! : )
Thanks!
Hi EsMom,
Unfortunately if being thin protected people from being type 2 then there are three people in my family that should not be type 2. And since both sets of my grandparents came from Sweden that would rule out most major ethnic groups from here in the US. My Mom had 6 uncles who were diabetic and 4 sisters who were diabetic also, but I couldn’t tell you what types they were. My Mom also came from a family where she had 9 sisters and 1 brother. And she had either 12 or 13 aunts and uncles. All of them except 2 were very thin people and quite tall.
I realize you are very anxious about your diagnosis, but each of us is so different. I am the only type 1.5 in our entire family. We have both type 1’s and type 2’s in our family and bigger people and thin people. The tests you want run will give you the best possible answer.
You know what’s so frustrating? Is that for the past several weeks, any meal with a decent amount of carbs would have my sugar between 160 and 195 after 2 hours but this weekend, even after a high carb meal, it’s normal! What in the world? It’s like it just disappeared. I’m assuming this may be normal if I’m in the honeymoon phase of LADA and my pancreas is just acting sporadically?? Such a complicated disease! : )