I came across TUdiabetes about eight months ago when I was looking to understand diabetes and why I had it. With the help of my online friends, I learned that I was right to question my diagnosis. In the end, I was correctly diagnosed with LADA and I’ve been living on insulin happily ever since.

But this story does not have a happy ending because through TU I’ve met so many diabetics from all across the world who have been misdiagnosed or who question their diagnosis and are perhaps not receiving proper treatment.

This phenomenon is something I believe leaders in the diabetes community need to be aware of and need to address.  I’m appealing to you to share your stories of misdiagnosis in an effort to show that this problem is widespread.

If you’ve been misdiagnosed or you question your diagnosis, please share your story here. It can be as brief or descriptive as you’d like. You don’t have to identify yourself, but I would like you to at least say what state or province you’re from and what country. If you’ve already told your story on another discussion thread or on your profile, please cut and paste it here. I’m interested in any story of misdiagnosis you’ve had (e.g., Type 2 to LADA, gestational to Type 2, Type 2 to MODY).

I’m hoping to collect at least 50 stories that I can send to these organizations to draw attention to this issue.

Tags: 1.5, LADA, misdiagnosis

Views: 1843

Reply to This

Replies to This Discussion

Was misdiagnosed at type 2 given Metformin which obviously did nothing. Meanwhile had two bouts of gastritis and had to beg to try insulin. Once they agreed, surprise surprise it worked! Wasn't until sometime later when blood work was finally done that doctor surprisingly told me I was type 1.
Doctors need to quit diagnosing based on what you look like and do there job and investigate with the correct tests.
Well I will certainly add mine! My Gad-65 results came in Friday of last week. They were greater then 30(Quest does this because once they get to 30 they stop counting) and my cpeptide was 1.42 with a fasting of 118. I actually got a type2 diagnosis in 2005. So for years I thought I was a type2 and then I had my son in 2007. In 2008 I went into the doctor to find out at 28 I had thyroid problems..huh? I'm assuming that is when the antibodies started attacking? so for 3 years after the thyroid I was still type 2. oral meds were not helping and my fasting would be 250-300 and after meals would be 350-390. So I started to see an endo this year. She decided insulin was the only way to go since oral was not helping. Fast fwd to the beginning of this post. I spoke with her Monday and she said she will not type as LADA because I am not presenting as I type1 due to me still making insulin, and my bmi. She went on to explain that just because my gad65 was positive is only a marker that you have a chance to get type1..WTF? So here we are. I am glad that I have insulin..but upset that I am still misdiagnosed as a type2.
I saw an Endo specialist about 4 years ago because a Neurologist found a high GAD in my labwork.. though I showed no signs of diabetes (other than lows), the Neurologist suggested I get screened for pre-diabetes. I was told by that Endo (who works for a highly-accredited university) I have nothing to worry about. Now jump to Sept. 2010... After 2 years of not feeling well, and seeing multiple doctors in search of answers, my family physician thought my constant thirst, nausea and sudden weight-loss warrented a glucose reading. My BG was 235 fasting. When I asked him if I was type 1 or type 2, he rplied 'Type 2. Type 1 is juvenile and only kids get it'. He let me leave his office without checking for ketones, getting an A1c, or even checking my kidney and liver function. He just wanted to see me back in 2 weeks. I immediately cut carbs from my diet, and within a week saw my numbers drop from the 300's to the high 1's and 2's.. The doc decided to put me on metformin. This did not help any, and made me so sick. It was hard to function. I felt better without it.
The week I was diagnosed I purchased an informational book. It talked about LADA, GAD antibodies (which I already knew was hgh) and misdiagnosis. I knew then I needed to see a specialist. By the time I was able to see my new Endo, it was late October. She did bloodwork, and what do you know! Insulin therapy started the first week of November, and I haven't felt this good in years.
I really like my family physician, but am switching, simply because I am frustrated that he was completely unaware of LADA. I wonder how many other patients he tries to treat which may be in the same boat. And after learning and educating myself so much over the past 6 months, I am also astonished at the care I DID NOT receive during those first few, and critical weeks following my diagnosis. My endo thinks I may have been in ketoacidosis, but nothing was ever done to check. There really should be more guidlines and higher standards to keep all physicians informed.
I had posted an item here in February but can't find the thread now. You can see my old blogpost on this issue here.
All Discussions My Discussions Add Options▼Mis Diagnose of sonPosted by Kimberly Keyser on September 28, 2011 at 9:42am in Type 2 Diabetes Forum
View Discussions
I'm the mother of son that was 15&1/2 when he got hurt playing football and shortly before this went to what the kids call hell week to try out at the high school for the football team. he started to drink alot after that week at try outs. Just thought it was due to the heat and working out. within a couple weeks john was playing football with friends and no one used pads ect. when john came home with friends they said he got hurt and one of the guys shoulder met with john eye when they went to tackle together. I called a friends that is a nurse and she said his eye sockit above his eye feels broke. So off to the emergency room we went. through this we had to have surgery the next week. the doctor had to have blood test ect done for the surgery so we went and got that done. Barely got home and got a phone call from the ER doctor that we needed to bring john emediatly to the ER or they would send a ambulance to the house to get him as soon as possible because his blood sugar was 650. this was the scareast thing to hear as a parent with no understanding of this desease. John was put on insulin and pills at first and only after 2 weeks was having bad sugar lows at school so we reduced his insulin to the point the pills in time seemed to be enough. He was on Metformin er and it seemed to work for him except it really bothered his stomach. John ended up back on some insulin about 2009 because of not taking his pills rite so his A1C went up and he was out of school at this point so had more time to concentrate on his diabetes. We were told he had type 2 from the begining because his age was almost adult by the time he showed any signs of having Diabetes. My son has struggled with the emotions that this desease bring on and has a hard time at times with why he has this. In the past year john went off to college and just got married in August. On September 14th 2011 John had been fighting a very bad sinus infection and his wife took him to the ER were they live. John was Diagnosed with having DKA . He almost died and we are now told he was type 1 diabetes. This is not something we thought could happen with type 2 so we hadnt watched for any signs of this. John hasnt had regular insurance but grew up on medicaid untill he turn 18 and they dropped him from the medicaid. I didnt understand why since he was still in school and really needed to see a doctor and get help with supplies. Its been a struggle since he lost ins to get help and see a doctor regularly. We did find help at VCU in Richmond Va. we are trying to get help again now since it has to be renewed each year. John lives in Lynchburg VA and we are trying to seek help now. It seems crazy for someone to tell us unless he looses a limb or is blind he cant get the help he needs for now while he is in college trying to make a better future for them. Income isnt much but we are trying to help him. Dont want him to go through the major things I've seen others go through with this desease. I'm getting educated but still new things to learn and try to help teach John and his wife. Hope this helps in some way. Thankfully have my boy still. Love in christ Kimberly
I'm horrified to hear what your son had to go through. It's incredible that they would say a 15-year-old boy is too old to have Type 1 diabetes! Good luck to you. I hope his situation with the insurance gets resolved soon. take care and thanks for sharing your story.
If supplies are a problem, suggest that you contact the major manufacturers (in the US - Lilly, Novo Nordisk). They have programs to assist people who cannot afford insulin. Here is some further information.

Drug companies that sell insulin or diabetes medications usually have patient assistance programs. Such programs are available only through a physician. The Pharmaceutical Research and Manufacturers of America and its member companies sponsor an interactive website with information about drug assistance programs at www.PPARx.org. Another program is at http://www.togetherrxaccess.com/. Maybe some of these places will have more suggestions for you.

There are also plenty of really good books that you can borrow from your local library: Think Like a Pancreas is one off the top of my head. Diabetes is the kind of disease where the more you know, the better you can manage it. Don't hesitate to ask questions here!
thanks this site is awesome. Pray my son links in hear to. very soon I hope.
Hi Kelly,
As a Canadian I am interested in the results of your collection of stories about the misdiagnosed. Did you have the opportunity to send these stories to the CDA? Did you receive a response? Joanne
I presented in 2003 at a hefty 275lbs so my GP said Type 2, Metformin and lose weight. I did both and honeymoon lasted until 2008 when I was down to 160lbs and my bgl was not in control. I finally saw an endo and he did some blood work and told me I was LADA.
hazatude ... I suppose, this is where the confusion lies , except for the title of the type of diabetes ...meds , weight loss since 2003 worked ...5 years later and your BG's were NOT acceptable ...I am glad you ended up with an Endo !! and glad you were pro-active with your treatment .
I'll join in on this thread, just because I think my misdiagnosis might be one of the oddest. When I was 11 I was lethargic and moody and when I did go out and do something I hurt myself (rode a motorcycle off the road, played football with a group of boys and pulled my shoulder out of its socket, that sort of thing.) So, I was diagnosed as abused! The MD had me consult with a child psychologist. He called the city... my parents were checked out. I kept insisting I wasn't abused, I didn't feel good.
When I wasn't off being a hyper 11 year old, I was hanging out "sunbathing" and drinking orange juice (yeah, that wasn't a good idea, LOL). I smelled funny, I was pale, I couldn't do the sports and things I liked to do for more than a few minutes before I'd get hurt...
My mom finally got very angry at all of the accusations and yelled at a children's advocate and my doctor something to the effect of "her father's a diabetic, have you checked that?!"
he checked, BG too high to read with his office equipment, and we went straight to the hospital.

RSS

Advertisement



REsources

From the Diabetes Hands Foundation blog...

#MedicareCoverCGM Panel Discussion

If you follow the diabetes online community, you know that #MedicareCoverCGM is a big deal. We have continued to raise awareness on #MedicareCoverCGM because we believe that ALL people living with diabetes should have access to continuous glucose monitors (CGM). With Read on! →

#WalkWithD: Making MORE Sense of Diabetes

  A few years ago, we at Diabetes Hands Foundation reached out to the members on TuDiabetes and asked them to share their perspective of life with diabetes through one of the five senses, as part of an initiative called Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)


DHF VOLUNTEERS


Lead Administrator

Bradford (has type 1)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

Brian (bsc) (has type 2)

Gary (has type 2)

David (dns) (type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service