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Permalink Reply by David on February 25, 2011 at 7:46am

I have to agree about the lack of recognition. I was having blood sugar issues for about 10 years before my diagnosis (including reactive hypoglycemia) and was always told that there was nothing wrong with me. Also, a general decline in health with various, nagging health problems that all seemed to get better once I started on insulin, hmmmmm........

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Permalink Reply by kellyone on March 13, 2011 at 11:16am

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.

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Permalink Reply by Stardust31 on March 16, 2011 at 6:56am

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.

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Permalink Reply by Anna on April 18, 2011 at 9:35am

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.

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Permalink Reply by RogerMumbai on April 18, 2011 at 10:14am

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.

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Permalink Reply by angelic 1 on September 28, 2011 at 9:47am

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
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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

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Permalink Reply by Kelly on September 29, 2011 at 7:19pm

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.

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Permalink Reply by Susi (Ladalife) on September 29, 2011 at 9:50pm

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!

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Permalink Reply by angelic 1 on September 30, 2011 at 6:10pm

thanks this site is awesome. Pray my son links in hear to. very soon I hope.

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Permalink Reply by Peetie on September 30, 2011 at 7:26pm

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

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Permalink Reply by hazatude on October 3, 2011 at 11:13am

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.

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Permalink Reply by nel on October 3, 2011 at 7:35pm

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 .

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