Diagnosed with Type 1 Diabetes as an Adult? You Are Not Alone

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Woman injecting herself with insulin

What happens when you’re diagnosed with type 1 diabetes as an adult? LADA – latent autoimmune diabetes in adults, also sometimes called diabetes 1.5, can strike later in life than typical type 1 diabetes.

Imagine that you are in your twenties, thirties, or even your forties or fifties. You are progressing down your chosen path in life, whether it’s an established career, a relationship, marriage, children or all of the above. All of a sudden, you’re losing weight, thirsty and in the bathroom all the time, and you feel like you have no energy. You just plain don’t feel good.

You find out that you have type 1 diabetes, and your world is turned upside down, at least until you get the hang of managing diabetes in the middle of everything else you have to do in life.

There aren’t many resources for adults diagnosed with type 1 diabetes. Most of the literature and support is geared toward kids because typically type 1 strikes children and teens. Not so long ago, type 1 diabetes was known as “juvenile diabetes.”

How does it feel to be hit with a disease that is usually diagnosed in children? E-mails and comments from readers talk about some of the issues of dealing with a new diagnosis of type 1 as an adult.

Mary, on feelings of isolation with adult onset type 1 diabetes

I was diagnosed with type 1 diabetes at the age of 42. My doctor had never met a type 1 adult before and absolutely freaked. She rang the specialist and talked to him in front of me before even telling me of her diagnosis. Since then I have self-managed my diabetes control and go through periods of frustration and guilt when I get it wrong. I live in a small settlement north of Wellington in New Zealand, where there are no local diabetes nurses. Being a full-time worker I find it very difficult to connect with anybody else with type 1 as most of the diabetes meetings are organized for the middle of the day. Isolation plus.

Jason, on having trouble believing the diagnosis of adult onset type 1 diabetes

I was just diagnosed with type 1 diabetes today. I am 32 yrs old and have no family history of diabetes and am in pretty decent physical shape. I went to the doctor one week ago for a routine physical that I scheduled about a month before. Coincidentally, I picked up some kind of flu the day before the appointment, so when I went to the doctor I was running a temperature of about 100, which was down from 101.5 the day before.

The doctor noticed very high glucose in my urine, and ran some other tests, and concluded that my blood sugar was very high, and that I was diabetic. He kept saying how bizarre it was, and repeatedly asked if I was sure there was no history in my family. “Where would this come from?” he said.

He gave me the testing equipment, and some insulin and told me to keep a record of my blood sugar and to give myself an injection every night and to come back in a week. I did quite a bit of research over the next couple of days, and found that during a fever, the body naturally increases blood sugar. At this point, I was seriously starting to question the diagnosis!

Chris, on the ups and downs of diabetes management:

I’m 32 years old. I was diagnosed with type 1.5 diabetes about three years ago, after an unusual blood test following an episode of bronchitis where I was treated with prednisone. My vision went blurry, I started losing weight…thirsty and you know the rest of the story. So far, I’ve managed fairly well, even greatly reducing my oral medications through diet and exercise.

I’ve had ups and downs over the last few years. I hated my endo doc, so I recently decided to stop going to him and resumed going to my primary care. I was told my brand of diabetes was unusual, but at this point I pretty much know what kind of treatment I need to keep my A1C down. My greatest fear is going downhill and having to go on insulin. Two uncles of mine died young of full blown type 1 that they [developed] as children. This fact does little to comfort me, but I try keep a positive attitude and a stress-free lifestyle.

Danielle, a shocking diagnosis, deciding to wear an insulin pump

I am a 35-year-old woman, I was diagnosed in June of 2000 at 27 years old. I had many of the telltale signs: weight loss, thirst, using the bathroom all night long, need for naps, weird vision and awful charlie horses in my calves at night. I had been on a business trip to DC in March and got a nasty cold/flu…after that I was working long hours and attributed feeling awful to that.

At the end of May, I started getting my period twice a month and finally went to the doctors. She called me that day at work and told me to get to my primary physician immediately. After confirming the blood sugar at 520 and making sure I didn’t have ketoacidosis, they let me stay at home instead of checking me into the hospital. The next day I met with an endocrinologist and the rest is history. I live in the Boston area and am blessed with some of the best doctors and medical resources in the world. Since 2000, under the watchful eye of a team of specialist I gave birth to beautiful healthy boys in 2002 and 2004.

I made the decision to wear an insulin pump in 2003 because I didn’t want the needles around the house with little kids. My best advice… I have lots…find a doctor who you trust. If the advice doesn’t feel right, find another. Take all unsolicited advice with a grain of salt. I have had stupid people say horrible things to me.

Insulin pumps are wonderful and WILL change your life. I carb count and it works well for me. My frustrations… exercise! My blood sugar drops so fast that I tend to avoid “working out.” I do walk and hike and try to move as much as possible but I sometimes feel defeated. Also, it’s hard to explain to your loved one what you are dealing with. My husband sometimes gets annoyed with me when I have an insulin reaction because I let myself drop too low. It’s exhausting being responsible all the time.

Paula, on being misdiagnosed and misunderstood:

I am a 59-year old woman and wondered whether I had diabetes for years until finally being diagnosed with Type 1 four weeks ago. I have gone through so much in these last months that I never would have thought would be happening to me.

This is a disease I have or we all have, not an illness. To have medical professionals unaware and unable to diagnose what we have correctly is scary to me. I have, or at least I feel comfortable with, a good endo who says she has seen a number of older type 1 people. I am in the “honeymoon” stage right now and can only hope it will last a long long time. The next step after honeymoon does scare me to a certain degree. Time will tell. I am very much like many of you, there isn’t much information for older type 1 people.

Jeanne, on being scared for the future:

Like so many of you, I’m struggling with next steps. I’m 46, very active, have always exercised a lot (never been overweight). My high blood sugar was caught through a random health screening at work. The PA did a finger stick and said, “You really should call your doctor.” I had absolutely no idea what she was talking about — did not feel bad for one minute or have any of the usual symptoms. I haven’t had as much as a stitch in my entire life, and now I’m faced with a life-altering chronic illness.

I keep thinking that they’re looking at someone else’s blood work. My primary care physician initially diagnosed me with type 1 but wanted it verified through an endo, which has happened. I’ve just started on a medication called Actos and have no idea what to expect. The endo says that it was caught early (I know I definitely did NOT have it two years ago at a routine physical).

My partner of six years is trying to be supportive, but he doesn’t really know what to do. He keeps telling me that he knows “lots of people” with diabetes and that I’ll be “fine.” I’m trying so hard not to take my anger and frustration out on him. I was also diagnosed with hypothyroidism and am on another pill for that.

I feel pretty lost right now and am so scared for my future. When I go to the endo’s office I’m surrounded by people who look horrible and sick, and I don’t want to end up like that. I’m sure this is absolutely normal — the shock and fear can be disabling. Getting educated is the key to good maintenance, but right now I just want my old life back.

Jill, on being mistakenly diagnosed as type 2 diabetes

I was diagnosed as a Type 2 diabetic 10 years ago at the age of 23, after my cousin who has Type 1 tested my sugar while we were camping and it was 513. I will never forget that day or that number as long as I live. I went to the doctors as soon as I got home. It was a whirlwind of appointments and tests. I was put on all different types of oral medications (Avandia, Metformin…..) and they would work for a while, then my insurance would change and I would have to start over with a new doctor.

At one point I completely went off of any and all medications, because I could not afford the cost of them. I ended up losing about 50-60 pounds over 7 months. I looked great, I just thought that it was because I was out exercising more (I just started to date my now husband), watching what I ate. I then changed jobs and now I have great insurance and found an Endo doctor that I am very comfortable with.

I was put completely on insulin and gained all of my weight back and then some! They told me that I had diabetes 1.5…….I am really confused by this! It has always been a struggle to me accepting the fact that I needed to change my lifestyle, simply because of this disease.

I have recently come to terms with everything and I am trying really hard to stay on track! I am starting my insulin pump soon, I couldn’t be more thrilled! I will no longer have to give myself 4-6 shots a day. I do have a question……Has anyone else been through anything like this?

Karen, on the lack of knowledge of some in the medical community:

I’m 48 years old and was diagnosed with type 1.5 diabetes. I’ll never forget the day because it was my wedding anniversary. I was in for a checkup because I had lost about 20 pounds in 3 weeks. I thought that my thyroid was just acting up or something. I knew that my stress levels were up at work, and I had been exercising more. I was wearing a size 4 and feeling pretty darn good about it. I mean for someone with hypothyroidism that had watched every calorie for years, this was pretty good.

My family doctor came back in after some blood tests and told me that I was a diabetic. I thought he was joking. He said that my A1C was over 15 and my fasting blood sugar level was about 450. I was like, “So, what does that mean?” I was in a state of shock. After four days in the hospital and meeting about a dozen nurses and the diabetic coach who all said, “You’re too thin to have diabetes. Are you sure you’re here for diabetes?” I was really freaked out by the lack of knowledge that the hospital nurses knew about diabetes.

The diabetic/diet nurse came in my room with 3 or 4 diets prepared. When she saw me, she said that she didn’t really know what to tell me. I couldn’t believe it. I left the hospital with an insulin starter kit and a lot of questions. My family doctor treats tons of patients with type 2 diabetes, but was admittedly worried about treating me with what he thought was type 1.5 diabetes. He said that most people had never heard of it and it was fairly new to the medical community. Most doctors, he said, still believe that the type 1 label can only be used for children or people that have had it since childhood. Type 2 is for everyone else.

Well, I didn’t fit into either category. He sent me to an endocrinologist. It was determined that I was a type 1/1.5. I’ve already had to change insulins and had to increase my doses several times. I’m taking about 6 to 8 shots a day… I’m so upset, angry, and depressed about all of this. I mean … my life was going along just fine. Now – bam, a brick wall.

Thank you to all the readers who participated in this article. Best of luck and best of health to you.

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