Retyped
Yesterday I went to see my endo, and he retyped me. Adult onset type 1. I have been on insulin from the beginning, but I don't need to go to the pump yet. I was wondering if this has happened to any of you?
Jody
Jody
Replies to This Discussion
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Permalink Reply by bolt on -
I had the same experience. went for almost a year taking t2 meds with no help. when i finally went to an endo, i took my first shot in his office. my pancreas still works some so have not had any real bad highs. am taking 22 units of lantis and 16units of novolog each day. diagnosed with t1 close to my 65 birthday. Have also wondering if any others out there.
Bolt
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Permalink Reply by Manny Hernandez on -
Yep! You are most definitely not alone, Jody. I am among the hundreds of members in TuDiabetes who, like you, have LADA (Latent Autoimmune Diabetes in Adults) or type 1.5 diabetes.
You can find many useful resources about LADA on this page:
http://www.tudiabetes.org/notes/Other_Types_of_Diabetes
Take care... and congratulations on knowing that you have LADA. Many people go on for a very long time w/o knowing, which means they cannot manage their numbers b/c their treatment is meant for a different condition!
Here too is an article I wrote about LADA for dLife not too long ago:
http://www.dlife.com/diabetes/information/daily_living/Viewpoints/M...
and a couple of other recent articles on the topic:
http://www.tudiabetes.org/forum/topics/ladatype-15-article-in-may
http://www.tudiabetes.org/forum/topics/diabetic-living-article-on
Take care!
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Permalink Reply by Patty on -
I still wonder for sure. I was told type 1 in the emergency room and admitted for 12 days to learn how to take insulin and diet and all of the diabetes101 classes. Left there to go to a Endo. who kept giving me oral meds. I finally asked him why, I said I was taught only insulin would help me. He said that I was type 2 ( probably because of age and weight) Then I said, put me only pills then, no shots. No,no he said i need both, GRRRRR!!they didnt do anything to help me soI just stopped the pills . Then I joined a medical study for new insulin and at the end of the study I was told I was a type 2. The study was for t1 so why did they let me participate in it. He said that to be a TRUE type 1 that my body had to make less than 0.5 % of it's own insulin and that mine was producing 0.8. How can I stand it! I switched endos and explained everything that had happened and he did a new c-peptide and said that I was t1. All I know for sure is that I have been on the pump for 10 years and on insulin for 18 years from my first day of diagnoses. I'm starting a new Dr. next month, maybe i should get his diagnoses too. Would I manage my care any differently if I was a t1.5? Can you tell me?
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Permalink Reply by Super_sally on -
I wish my endo would type me!
I suspect I am type 1.5.
Anyway, I am on insulin so I guess it doesn't really matter.
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Permalink Reply by Anonymous Jim on -
Diagnosed Adult onset Type-1 3 weeks ago. I have type-1 all over both sides of the family.Still adjusting to my new life
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Permalink Reply by TrueTheory on
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Hang in there Jim, you'll start to feel better once you learn how to take the right amount of insulin with the right foods.
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Permalink Reply by Brian (bsc) on -
Unfortunately, many doctors suffer from a cognitive defect. They rush to diagnosis. If 80-90% of the people who come through their door with high blood sugars are T2, then "everybody" must be T2. Then, when the patient does not respond to medication, has continuing high blood sugars, does not display insulin resistance, the doctor conveniently ignores or discounts the evidence. The idea that a doctor can so blatantly mislead themselves about evidence that contradicts their diagnosis is somewhat shocking, but it happens all the time. Many doctors suffer from this cognitive defect.
I am becoming convinced that the only way to get a proper diagnosis is to switch doctors, each time telling the new doctor that your previous doctor had it "wrong."
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Permalink Reply by Kelly WPA on -
“Then, when the patient does not respond to medication, has continuing high blood sugars, does not display insulin resistance, the doctor conveniently ignores or discounts the evidence.”
I also think ontop of the ignoring the evidence, doctors put blame on the patients that they must not be doing whatever they are supposed to do. I found that out when I developed gastroparesis and my BS started bouncing all over the place. The doctors knew I had gastroparesis and what that did, yet they did not offer any help as to what I should do. The only thing I heard was that I must not be doing what I am supposed to do. The one time when a doctor was criticizing my BS, I even said, “tell me what to do and I will do it” and I was met with blank stares. When I had my pump training this summer and talked to the trainer about my experience with medical people, the trainer said that it is easier to blame the patient as being non-compliant than to try and figure out how to solve the problem.
And you are right about switching doctors to get the right diagnosis. I did it several times with thyroid problems this last year and if I have a problem in the future, will do it again if I have to.
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Permalink Reply by Patrick on -
Kelley, when I was diagnosed (after loosing almost 100lbs in 8 months and scared to death and feeling like hell) my family doctor put me on pills even though my a1c came back at 19.75. I went an additional two months before he would even refer me to an Endo. Then once he finally gave up on the pills to control my glucose levels and referred me to an Endo, it was two months out before I could even be seen by the Endo (there are only 4 in my entire city in North East Indiana) my family Dr refused to write me a prescription for insulin because he was unsure how to tell me to use it. My solution: I bought humulin without a prescription at the pharmacy counter and some syringes and with the help of my step-father (a type 2 on insulin) I figured out a rudamentary sliding scale and began regulating myself.
When my family Dr found out what I had done, he was furious with me and dropped me as a patient. Such professional conduct. Apparently it would have been better to die while waiting for an Endo. How dare I assault a Doctors ego in an effort to save my life.
I have found an Endo that I respect even if I dont always agree with. I currently have no family Dr. The last five years of my life have been a hellish roller coaster. I am on a pump now and it's the most stable I've ever been.
BOTTOM LINE: Doctors write prescriptions and advise us but we are at least equally responsible for our own well being. Do your own research and be prepared to discuss and stand your ground. If you doctor refuses to listen or even consider your concerns you have a responsibility to yourself to rectify that situation. We are only victims when we allow ourselves to be!
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Permalink Reply by Stardust31 on -
I have had 4 endos before I got diagnosed correctly and started on the pump. Very frustrating and I know so many go through this!
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Permalink Reply by Theodore Quick on -
Oh well, at least it's better than it used to be...... When I was developing Type 1 in 1956 I was looked at by a GP ho didn't have a clue. When Mom asked him if I MIGHT have diabetes, since her grandfather and sister both had it the Dr said I couldn't possibly have diabetes because I wasn't an obese middle aged man. A week later I was having so much stomach pain that they finally took me to the ER.
There a surgeon looked at the symptoms and decided I had appendicitis, so he operated to remove my appendix and I went into DKA coma on the operating table. By then my parents found a new pediatrician who started me on insulin immediately, and they waited 2 days for me to wake up while trying to get enough electrolytes back in my bloodstream to make it possible.
For the long version look at: http://www.alldiabeticinternational.org/mystorytedmarch2007.html
So yes, switching doctors at times IS the best answer!
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Permalink Reply by jim201 on -
I cannot agree with you more, this sounds exactly what happened in my case. For over 12 months I was being treated as T2 even though my symptoms were classic T1 with a very steong history of T1 in the family. I was not over weigh, infact on the under weight side, metformin did little to stop the large highs in the high 20's, (400's). after 12 months and no improvement i demanded a referal to see a diabetic educator and asked the doctor why he thought i was T2, his reply, 'because that is what most people are'. That weekend i ended up in hospital with Ketoacidosis. once on the insulin i have never felt better in years and my sight has improved 10 fold. so what did i learn, sometimes you need to trust your body and not put sooo much faith in the doctors.
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