Thursday, October 25, 2012

She Was Misdiagnosed With Type 2 - Any Advice?

So I was out an about the other night with a friend who wanted me to meet her friend Dee so we could talk about diabetes. 
So long story short, I got Dee's digits, called her on the phone and introduced myself. 
And it turns out Dee was told she had type 2 diabetes "leanings" 19 years ago after having gestational diabetes during her last pregnancy. Since then she's been working hard to stay healthy & to do what her Endo told her to do. 
Her weight is normal and she does her best to eat healthy, but 4 years ago she was told to start insulin therapy. She's been taking 4 to 6 insulin shots a day, including 1 shot of Lantus ever since. 
But no matter what DEE did, she still was feeling terrible. 
Do you see where this is going? 
Dee found herself a new Endo recently & surprise, surprise, her new Endo feels that she was misdiagnosed. He feels she fits some where in the type 1 spectrum.
In my humble opinion, I don't really know if Dee had or has type 2, but I do think that Dee could fit in the LADA/1.5 spectrum, and I mentioned that to her. 
But I'm not a Dr.  and I don't play one on Tv, so I could be wrong. I mean I always thought that LADA could turn into type1. Turns out, that's not necessarily how it works.
But whatever she is... or isn't, she's pissed about all the years that have gone by and all the years of feeling like crap, both mentally and physically. An she feels like no one was listening to her in the past  when it came t her health, and that infuriates her. 
Like I said, she’s been doing everything right. Testing like a mad woman, counting her carbs, everything! 
Dee likes her new Endo and is meeting with a CDE on Monday to go over her most recents labs and learn some tricks of the diabetes trade. 

I told her about the DOC (and emailed her all sorts of DOC links) and I told her how depression and diabetes go hand and hand, and how that she has to hang in there. 
I told her that I think her new Endo sounds great and that working with a CDE is a life changing experience that can only help her. 
I told her about all my friends with LADA/type 1.5  and how many of them received the wrong diagnoses. 

So DOCers, if you were given the wrong diabetes diagnoses as an adult, how did you get the right one? 
How did you feel about being misdiagnosed & what words of encouragement can you give Dee & others who are feeling angry, overwhelmed and sad re: their years of being misdiagnosed? 


Kim said...

She may find some benefit from watching the "We Can Do This" video with the adults Dx'ed as T1s... many of them were misdiagnosed at the start as well, and share that experience:

Anonymous said...

It isn't just newly dx'd who struggle with this - having had t1D for almost 30 years I went to a new PCP in our area only to be treated with disbelief. After all, I'm an adult, I "must" have type 2. Hang in there and keep trying!


Kelly said...

I was told (at age 28) by my PCP that I likely had LADA, because he was well aware of my Dads T1. However, he started me on actos and metformin (I was 110lbs with a 13% A1c!!) and told me if I didnt go under 250 to go to the ER. Well, HELLO...I ended up in the ER where they still called me T2 because of my age, and got my first insulin shot only to hoover in the 400's for the next MONTH until I could get an ENDO appt. The Endo actually also labeled me a T2 until a week later my GAD antibodies came back positive and CPeptide was low.

I was SO angry that the very people that need to know about Diabetes really had no clue!! From the day of my "T2" diagnosis I searched online and started with where I actually learned from others to pursue my T1 diagnosis. I learned EVERYTHING from the adults there. EVERYTHING. I never had hospitalization or ANY training. So very sad!!

JMarler said...

I was mis-diagnosed as a child. I took a glucose sensitivity test in the 70's. I pestered my mom until she would let me play outside, and as a result I threw the test off. My BG came in high, but at the time if you did not show a 200+ BG, you were considered normal. I had all the classic symptoms all my life. Seizures, unexplained vomiting, black-outs, irrational behavior ... I was under the care of a family doc for 4 years who tested me for everything under the sun, but never checked my BG until I asked. When it came back 450+ I was told that I was a type 2 diabetic and given pills. Eventually they put me on a massive dose of Lantus and a 1500 calorie diet (I weighed 135 lbs at the time and am 5'11"). As a result, if I didn't eat every hour, my BG woud hit the low thirties, high twenties. Long story short, I eventually got fed up and went to an Endocrinologist who took one look at me and said with a skeptical face "You are a type 2? I don't think so. I can do an antibody test to verify 100%, but you are not a type 2" Sure enough he was correct. I was 27 at the time. Now I am on my third pump (Animas Ping) and my first CGMS, and feel great!!! My BG's are rarely perfect, but the contrast not only in treatment but in the way I feel is tremendous!

All I can say is stick with it. If you aren't getting the level of care you think you need, find a new doc. I found a network here in Austin (Austin Diagnostic Clinic) that has an entire Diabetes care center. I have access to my endo, two NPs, a dietician who specializes in Diabetic care, a care specialist who is an expert on pumps, CGMS, and other technology, and several nurses. I have a very open line of communication with my doc. They ask me questions, I ask them questions ... we talk about what's changing, what is working, what is not working. The level of care that I have now is a stark comparison to the "every undiagnosed adult is a type 2 obese person" care I got from my previous doc.

The good docs are out there.

Anonymous said...

I was misdiagnosed at a T2 about 5 years (at age 30) ago by my PCP. I was overweight and had a family history of T2. She sent me to an endo. So I did all the right things (lost weight, ate minimal carbs and exercised like a fiend) and still couldn't control my sugar. Went on metformin for a couple months. Then it stopped working. Went on Glyburide. Then it stopped working. Finally my endo just said "You have to be T1, not T2" and put me on insulin right away. The test came back and showed, yes, I am T1. So it was about a year of feeling crappy, not too bad comparatively. I'm not mad at my doctors. But I just hope that it taught them not to assume anything.

Jenn said...

(attempt 2, dang stinking computers)

I can relate. From the time I was diagnosed T2 until I was able to get it corrected to T1 was nearly 6 years. I was angriest at my first doctor for not listening to me and just telling me, "You just need to watch what you eat better." But the relief of knowing I wasn't doing anything wrong really helped. And the way a 'good' day feels is so AMAZING, I know I appreciate them a whole lot more than I thought I would.

I would let her know that it's OK to be angry, but that she is ultra super strong to be here now. Her story will touch someone somewhere and be the inspiration they need to make it through their rough time. She's an inspiration to me. I only went 6 years.

Val said...

Hi K2!

I was misdiagnosed at age 37 and took six months to fire my doctor and get correct diagnosis. Years, though, wow! I was borderline Gestational D with pregnancy #2 but completely normal with pregnancy #3, then got T1 3 years after.

You can have your friend check out the archives of my mostly-defunct blog - I think Nov 2005 has my dx story in it. If she wants to get in touch, have her add a comment - even something like "don't publish this comment, but my phone # is" if she just wants me to get in touch.

Scott S said...

There is a tendency among doctors to presume that anyone over the age of 18 absolutely MOST have type 2. The patient's best defense is to insist on lab tests for C-Peptide count and ISA (islet cell antibodies). When in doubt, the doctor should PROVE someone is type 2 or else type 1 might be a possibility.

Cherise said...

I agree with Scott!! also, she can ask for a GAD65. She should ask for more test or see a new physician.

Casey said...

I was misdiagnosed as T2 back in July of this year with an a1c of 14.5%. No family history of T1 or T2, and my doctor was resistant to my request for an endo referral. Endo also agreed with the T2 diagnosis (I am 27 and overweight) I pushed for antibody testing because a set dose of Novolog (5u with meals) and metformin were not cutting it. I even got horrible flu symptoms from the metformin after a couple of weeks, which disappeared after my correct T1 re-diagnosis in September after the antibody testing. I realize I was fortunate to go only a few weeks misdiagnosed - but the bottom line is that no one should go through any amount of time lacking the correct treatment!