Zoe’s Story: A Type 2 Misdiagnosis, Coming to Terms with LADA, and Launching the Type 1 Women’s Group

It was July 2007; I was 58 and finalizing the complex arrangements for my upcoming retirement and move to Guatemala. Developing a life altering chronic illness was the last thing on my mind. I’d been feeling exhausted for a few months but just wrote that off to working a full-time job and teaching at night But when I came up for air for I also noticed that I was peeing a lot and constantly thirsty. I knew those were symptoms of diabetes. I also had been losing weight without even trying, which was something that was unheard of for me, especially at this stage of my life! I didn’t know whether weight loss could also be a symptom of diabetes so I Googled it and when I found out it could I asked my PCP to do a blood test. When the nurse called and told me my fasting blood sugar was 325 I had no idea what the number meant so just said, “So that means I have diabetes?” I had been pretty sure what the results of that test would be and I wasn’t particularly concerned about it. I’d heard that people could go decades with diabetes before needing to go on insulin so I figured,” no big deal, I’ll just take a pill and be fine.”

At the time of my first doctor’s appointment I was a little over two months from my departure date, and to be honest, I had other things on my mind. So my memory of that visit is a bit hazy. I don’t recall if the doctor actually said “type 2 diabetes.” I think at the time my sum total of knowledge on the types were “the juvenile kind and the one you get when you are middle age and/or overweight.” I had, over the years, put on 40 pounds of excess weight. At that point I’d lost about 20 so I was still somewhat overweight, plus I was 58.  So obviously I had type 2. My doctor, no doubt, made the same assumption.

During that visit I also met with a nutritionist whom I proudly told: “I eat very healthy, I’m a vegetarian and I haven’t eaten sugar in 13 years (due to an eating disorder).” She agreed it didn’t sound like I needed to make any changes to my diet. She never asked me if, as a vegetarian, I ate a lot of pasta and rice (which I did). I was put on oral meds, given a meter and told to test a couple of times a day. My numbers were always good and I happily embarked on my new life adventure, with barely an extra thought for diabetes.

Fast forward 15 months to October 2008. I noticed that my blood sugar, always so steady, had started going up, not by a great deal, but it seemed to be doing a slow but steady rise.  I saw my Guatemalan GP and he tried switching and adding meds, but nothing seemed to make much of a difference to the rising blood sugars. By the end of that year it was well above where it should be. I had a trip to the states planned to celebrate my 60th birthday, and decided I’d talk to my doctor when I returned.  Life and more oral meds intervened. By February of 2009 I was seeing numbers consistently in the high 200s, frequently popping into the 300s and a couple times even the low 400s. I’d waited too long; I also realized I needed to start insulin, I just didn’t know why. I had thought you could have (type 2) diabetes for decades before you needed insulin! My doctor didn’t know what was happening either, but just went ahead and started me on a standard beginning basal dose for a type 2, but I crashed before each meal. Something was not right and I was determined to figure out what it was! I had a 15 year old book about diabetes published by Johns Hopkins so I searched it for clues. It included a chart listing the differences between type 1 and type 2, and under type 1 for age of onset it said “usually in childhood but can also occur in adulthood.” Hmmmmm. Could I possibly have type 1? I then got online and started researching as well as going on two message boards to talk with other diabetics. Suddenly I started hearing about LADA. For those of you who don’t know – that is Latent Autoimmune Diabetes in Adults, a slow onset form of type 1 that happens later in life. It all started to fall into place. I compiled a list of five things that I realized indicated my type 1 status. They were:

  1. Weight loss (in the end I lost 40 pounds)
  2. Another autoimmune condition (I was diagnosed with Graves disease in 1994)
  3. Insulin sensitivity (my doctor had to keep lowering my doses so I wouldn’t crash)
  4. Low c-peptide (.38)
  5. Need for insulin a little over a year after diagnosis

I made an appointment to see an endocrinologist in Guatemala City, though by that time there was little doubt in my mind I was type 1. (The final determinant I learned, would have been antibody testing but nobody in Guatemala knew what that was!). I presented my list to the Endocrinologist. She took a pen and checked off each of the five items. She admitted she’d never heard of LADA, but just said, “You have type 1”. What a validation! I wasn’t crazy! It was only after leaving her office that I thought to myself, “Why am I happy that I have type 1 diabetes?!”

I’ve since learned that adult onset of type 1 is, in fact, as common as juvenile onset. Also that 15-25% of us are, like me, misdiagnosed as type 2. With the aging of the Baby Boomers, and type 2 diabetes beginning to be seen as a national epidemic, our media is filled with “diabetes” information which, in fact, only pertains to type 2. This can cause type 1 adults to feel quite isolated. JDRF Bay Area Chapter now offers significant activities geared to Type 1 adults, which is a wonderful resource. (Because remember that even “juvenile diabetics” grow up!)

 One of the websites I’d discovered in my great quest to determine what type I had, was TuDiabetes.Org. TuDiabetes, unlike most resources out there is oriented more to type 1. It is also an amazing bunch of people with a wealth of as the saying goes, “experience, strength and hope”. The Diabetic Online Community (DOC) is also an incredible tool to reduce isolation and increase knowledge.

But online support, no matter how valuable can’t stand in for real life connection with others who have similar experiences in managing type 1 24/7. In 2009 I decided to return to the States and the Bay Area. At that time I thought about accessing a group of other type 1s. I started looking around and found an amazing lack of support groups for type 1 adults. There were resources for parents of newly diagnosed children. There were hospital-based educational groups which were highly structured and run by nurses or CDEs which generally seemed geared to the newly diagnosed. Other than that, most groups seemed geared to type 2 or open to both types. While I do believe there are certain commonalities all diabetics have, I feel there are significant differences between the experience of each type and I wanted to share with people whose experience reflected my own. The type 1 support group I was looking for just wasn’t out there! This surprised me and I was determined to start my own group. I’d run groups as part of my career, and knew the value of meeting with people who are going through a complex often difficult experience similar to one’s own. I put up some flyers in Berkeley where I lived and only one woman called (that woman is my friend to this day!). I was frustrated.

Then I saw mention of the JDRF and volunteer opportunities. I e-mailed Carolyn Eisen, the Outreach Manager, who thought a type 1 group for adults was a great idea. She said that what she felt was most needed was a type 1 women’s group. I nearly laughed with glee – I have always felt a very special connection to women-specific groups, feeling that when women meet alone they are able to share on an honest and deep level they can’t do in a mixed group. It was perfect! JDRF used its resources to put out the word, and help me get started, and sponsored by a well-known non-profit I was able to contract with the Berkeley Public Library to use one of their conference rooms for our monthly meeting. I picked a Saturday morning early in September 2010 for our first meeting. Then I sat alone in the conference room for an hour and nobody came. I was so disappointed! When I looked at the calendar I realized that it was Labor Day weekend. Being retired from fulltime work and having lived out of the country for two years I had been completely oblivious that I’d chosen a weekend when many people left town! I rescheduled it for early October and five people showed up. Each meeting after that more people came, and I received e-mails of interest from women on a nearly daily basis. By the time I left the Bay area a year later, the e-mail list was over 60 women.

We were all type 1, but we were as diverse as any group of women. We were all ages, from teenagers to 70-year olds. Some of us were diagnosed as children and remembered a time before meters when you tested by peeing on a strip (a highly inaccurate process). Some of us were like me, shocked to find ourselves type 1 diabetics in adulthood and middle age. Some of those were LADAs like me and some were sudden onsets who were diagnosed in the ER in DKA. It was an amazing experience to sit in a room with so many type 1 women and share experiences with carbs, insulin doses, control, diet, exercise and so many things we didn’t have to explain. The group developed its own culture, including a unique brand of type 1 humor. There were also meetings where we went through a lot of tissues. We shared tips and resources. We talked about traveling, working, having relationships, having babies, aging – all as type 1 diabetics. We felt as if we were home.

In November 2011 I decided to move to Trinity County in the mountains. I left this group in the very able hands of three amazing women: Amber, Ilana and Donita. The group has continued to flourish and more women find this wonderful group every month. I went for a visit to the Bay Area and attended the group this past September. As I walked in a woman asked me if this were where the Type 1 Women’s Group met. As the group started she introduced herself and said she had been feeling so alone with her diagnosis and was so glad to have found us. She had a lot of questions and at one point apologized for asking so many questions. We all smiled and said,” don’t worry, that’s what we’re here for”.

To join the Type 1 Women’s Group and find out upcoming meeting dates click here.