I printed out the Aetna clinical guidance and showed it to my doctor. To no avail. Having insurance approval still could not overcome incompetence and fear.
I am reading a book right now that suggests that we are in the middle of an epidemic. “The Autoimmune Epidemic” (http://www.donnajacksonnakazawa.com/autoimmune_epidemic.htm) suggests that environmental factors are causing many of us to have autoimmune attacks causing Multiple Sclerosis, Lupus, Crohn’s Disease, Type 1 Diabetes, Rheumatoid Arthritis, and other autoimmune problems. The author further charges that doctors are basically dropping the ball across the board, failing to do research, recognize the problems and are woefully incompetent diagnosing and treating the problems. Sound familiar.
Absolutely familiar!!! Much easier for some docs to tell you (with certain autoimmune conditions) that it’s all in your head!
Just curious, Susi, what was the test that assured you that you are LADA? GAD? I’ve never heard of a LADA going that long without insulin!!
Actually, I’ve posted the chart below before. It shows that a significant number of people who are antibody positive don’t necessarily progress to diabetes even after 15 years. If I recall, somewhere I read that the average time for LADA between diabetes diagnosis and insulin dependence was 6 years.
BSC…My new endo did that for me!! She forwarded the test and her notes are OUR new method for treatment. My husband was like YES…send the old doc your notes…I want you to rub his nose in it!! I was right afterall…I had been fighting with him for 3 months when I said enough is enough!!
Thanks…I am very happy I FOUGHT for myself. I hope others are willing to do so also!!!
It really does not matter WHAT age you are…just because your over 30 does not mean YOU have to be a type 2!!! I wish more people understood that. I know another woman on another forum who was 51 diagnosed with type 2 but is actually LADA and found out through more testing…she was thin also!!!
Hope your doing better now!!!
Could be a honeymoon phase. Read today someone with LADA thought to be on one for over 5 years!!!
We need to band together…all of us type 1.5/LADA’s and get the word out. Why aren’t doctors/researchers taking MORE time with this as they do with type 1 and type 2. It is just as serious…if not more so, since SOOO many people are being misdiagnosed!!! Having been misdiagnosed and put on the WRONG path of treatment!!!
I blogged about my misdiagnosis adventures here. But, below is the text from that blog:
For almost 10 years, I’ve been told different things about my diabetes. I was diagnosed as a type 2, despite my young age, “normal” BMI, very high A1c, and no family history of type 2.
I was put on oral meds (metformin), which did nothing except make me incredibly sick. I vomited almost every day while taking it, and my blood sugar remained high. This pattern continued for six months, with a few ER trips for DKA-type episodes in between. I changed doctors twice, but neither thought to test me for type 1. In fact, one even said that such testing would be stupid because if I was a type 1 and not taking insulin, I would be dead within a few days.
Like a good little patient, I believed them. I went to the required CDE classes, learning all about how my poor eating habits and lack of exercise caused my diabetes. I was the youngest and smallest person in the group.
After six months of taking metformin and losing 40 pounds (yes, 40!), I made an appointment with a new endo practice. I was immediately placed on insulin, which was an entirely new experience for a reformed needle-phobe. My doctor told me that I probably had type 1.5, but she did no testing to confirm. Since my treatment would be insulin, it didn’t really matter what type I had (or so I thought).
After many years of MDIs, I decided to make the transition to insulin pump therapy. My endo at that time was a proponent of Minimed, so I went with their Paradigm 722 pump. Eventually, I decided to ditch my doctor (she treated me like a child – threatening to withhold pump supply prescriptions if I changed any pump settings myself), and I found a new endo.
I began seeing Dr. S. about a year and a half ago. Our relationship started off well. He was more interested in my opinions and feedback than any doctor I’d ever met. He encouraged me to adjust my basals and worked with me to get a Minimed CGM.
When the subject of my “type” came up, I told him that I had never received a definitive answer. He ordered a c-peptide test, which came back low. Despite this, he decided to classify me as a type 2. I know why he did this. In the years since I began taking insulin, my weight has crept up to its now “obese” BMI. There are some underlying reasons for the most recent weight gain, but they’re not really relevant to this issue.
Flash forward to last month. After using the Minimed CGM for 18 months, I decided that I’d had enough of painful insertions, bleeding, and sensor errors. I called DexCom, requested and completed the materials to get approval, and waited for my new system. I couldn’t have imagined what happened next.
When Dr. S. sent the Letter of Medical Necessity, he classified me as a type 2 diabetic. He did this in spite of the evidence to suggest otherwise (lack of insulin resistance, low c-peptide, etc.). He also told the DexCom folks that I expressed concern over the cost of supplies as a type 2. While we did have a hypothetical discussion about the need to know what type I am so that insurance would cover my supplies, it wasn’t with the understanding that I was a type 2. His statement insinuated that I was trying to pass myself off as a type 1 so that I could get “stuff.”
Naturally, as a type 2, insurance is reluctant to pay for high-ticket items like pumps and CGMs for me. I immediately sent an email to Dr. S. to find out why he’d told DexCom such a thing. His response was that he “really doesn’t think I’m a type 1.” He ordered antibody testing to be sure, but he felt confident that his diagnosis (type 2) was correct.
I received the following email from Dr. S. last week:
” . . . labs showed a positive GAD antibody. In addition, with a fasting glucose of 146, the c-peptide was low . . . This is consistent with Latent Autoimmune Diabetes of the Adult, a form of Type 1 DM. I was not sure before, but it is clear now that you are a Type 1 diabetic.”
To say I feel vindicated is such an understatement. I feel like I had to fight for this diagnosis for one reason: my weight. Doctors really need to step out of the box when diagnosing patients.
Another interesting point is that there is far more autoimmune disease in the “developed” world vs. the “developing” world. Are we too clean, perhaps?
Thanks, Kady. I am!
Many developing countries are very clean, Shannon! (Throughout Latin America you can see people scrubbing their sidewalk outside their house or business all the time!). I would be more likely to wonder about some of the unhealthy habits we have such as junk food, chemically processed foods, pollution, etc, things which exist less in poorer undeveloped countries.
“To no avail?” Pardon my language, but WT_?
You said, “I need this test and the insurance company backs me up.”, and the doc’s response was…“I don’t think it’s medically necessary?”, or “I’m the doctor, don’t question me?”, or…
I think you’ve misunderstood my point, Zoe. I was talking about the developed world’s obsession with anti-bacterial, anti-microbial, etc., not implying that developing countries are unclean. That is why is wrote “are we too clean?”.
There have been studies that suggest that environments that are too clean are actually harmful:
http://www.scripps.edu/news/press/041504b.html
Junk food, processed foods, etc., are certainly factors in the increased occurences of heart attacks, stroke, type 2 diabetes, high blood pressure, and many other conditions. I was speaking specifically about autoimmune disorders, which can occur without warning and are unpreventable.
I had read that the average time was between a few months and 4 years.
thanks for the clarification, Shannon. It did hit me a bit off and I’m used to people having negative images of developing countries. Interesting point, I wonder if we are cleaning away the "good bacteria " with the bad? I returned to the U.S. during the height of the H1N1 scare and it was new to me to see all the bottles of anti-bacteria stuff everywhere!
Congrats on your vindicating e-mail btw! I had tears in my eyes when my endo said “You are a type 1” even though by that point there was no doubt in my mind. It wasn’t till later that I thought, “now, why am I so happy to be a type 1??”
Shannon…YOU GO GIRL.
It really is bothersome to me that we have to FIGHT our doctors for the right diagnosis!!! I do all the work…and they get all the credit. I think we are all a puzzle…and some doctors want to squish the wrong size piece into our puzzle…because that’s all they know or care to know…GOD forbid…some of them actually WORK and figure out what is the RIGHT diagnosis!! I know ALL doctors are like this…but just from the number of stories on here and what I have been through in the past with my 2 children…it is mind blowing!!! I now see a wonderful endo, who actually listens and takes the time with me!! She is fabulous. I know…I AM VERY LUCKY!!!
Glad you go the right diagnosis after so long!!!
I’m still fighting to get classified as Type 1.5/LADA. My doctor’s and their team still want to call me type 2 even though I have never been overweight, I weigh 123lbs at the moment. I have no family history of diabetes, I have another autoimmune desease, Thyroid. I don’t suffer from high blood pressure or high cholesterol, even though the doctor keeps insisting I start on statins. She’ll get no success there!
I feel that the doctor’s don’t listen to me. I’ve asked for a GAD-65 test and a c-peptide test but have been refused. One doctor told me that I’ll be taking insulin whether it’s type 1.5 or type 2 so there was no need to do the tests. The other said unless he thinks my pancreas has stopped working he won’t order it.
They may not need to know if I’m a type 1, 1.5 or 2 but I do… So I’ll keep plugging away… planning to change doctors if possible so that hopefully I can get some answers.
My story is rather the reverse of others I’ve seen in this forum. Many stories here about being diagnosed as a Type 2
when they were actually LADA or Type 1, based only on age at diagnosis. I was diagnosed as not having ANY possibility of diabetes since I was only 5 years old, and diabetics were ALWAYS middle aged and overweight…
So the family doctor Mom took me to said MUST be getting too much sun at mid-day, so keep me in and have me take salt pills to keep from losing fluids so rapidly. She tried that for a few days and then on the morning of her birthday my stomach was hurting so much I begged to go to the hospital in the early morning hours. When I got there a surgeon saw me first, so he decided I had appendicitis. In the operating room he started taking out my healthy appendix and I went into DKA coma on the operating table…
In the meantime Mom and Dad hired a new Pediatrician to help me since the doctor and hospital never acknowledged that Mom suspected diabetes, which her grandfather (definitely Type 2) had in the early 1900s which he treated successfully for 25 years before anyone else had any idea how to treat it. She really knew nothing about it, but she kept asking if it could be diabetes, and might as well have talked to a wall.
So once the Pediatrician looked at me he put me on insulin immediately and things started finally getting better. Unfortunately my body had been so busy draining off glucose via the kidneys that my electrolyte levels were through the floor, so I didn’t wake from coma for 2 days more. Mom & Dad were there on a death watch, expecting me to die at any moment when my eyes opened, and I began my not quite (at least until April 9) 54 year journey with Type 1 diabetes.
Mind you this is less likely today, since medical “science” has improved greatly since April 1956, but I’m sure it still happens occasionally in some places, hopefully only where medical support is poor or nonexistent.