Title

Personal Stories

When Type 1 Strikes in Midlife

An incorrect diagnosis of type 2 diabetes when you have type 1 diabetes is a serious misdiagnosis that can be avoided with a simple blood test. Recent studies show that up to 40% of adults older than 30 years with type 1 diabetes might have been misdiagnosed with type 2 diabetes.

When Type 1 Strikes in Midlife

Rie Attridge knew something was wrong. She hadn’t felt well in several months.

“I’d lay in bed feeling tired and nauseous. I thought maybe it was my thyroid or possibly depression. It was at the height of the pandemic,” said Rie. “I felt like garbage.”  

Rie, a petite, active, 54-year-old real estate agent from Salt Lake City, visited her primary care physician, who tested her blood sugar. Her hemoglobin A1c was 11.5. The glycated hemoglobin HbA1c test tells you your average blood glucose level for the past two to three months. Individuals with diabetes take this test regularly to check their average and make sure they are staying within an healthy range. The A1c test is also used to determine diabetes. The normal A1c range for someone without diabetes, is typically between 4-5.6%. Levels between 5.7-6.4 are considered prediabetes, while levels of 6.5 or greater indicate diabetes.

Her doctor diagnosed Rie with type 2 diabetes and put her on Ozempic, an injectable noninsulin medicine given to patients to help improve blood sugar levels. (Note: Ozempic is not for use in people with type 1 diabetes.)

After several weeks on the drug, Rie’s condition worsened; the tiredness and nausea continued. “I was so sick on the Ozempic. I knew something was wrong.”

Ozempic®, which is not approved for weight loss has gained recent popularity in the media as a new weight loss drug. It's been used for years to treat diabetes, but the side effects include low blood sugar (hypoglycemia), tiredness, nausea, diarrhea, constipation, stomach pain and other side effects. The symptoms of type 1 diabetes and diabetic ketoacidosis (DKA), a serious complication of diabetes, include extreme thirst, increased urination, dry skin, headaches, muscle stiffness, vomiting, nausea, stomach pains and lethargy—similar side effects to those of Ozempic. Rie said she constantly drinks water and frequently goes to the bathroom, so these common signs of type 1 diabetes weren’t red flags for her as they are for most people.

Her best friend’s husband had late-onset type 1 diabetes, and one of his symptoms was that his tongue hurt. Rie’s tongue hurt, too, so she decided to get a second opinion. She wasn’t satisfied with her primary care doctor’s diagnosis and decided to contact an endocrinologist. She once worked as a pharmaceutical rep and met with a lot of endos.

Pro Tip: Getting a second opinion is not only a valid choice but one that could save your life.

At the endocrinologist’s office, the PA said after hearing her symptoms, she thought Rie had type 1 diabetes. The antibody test confirmed it. They started her on long-acting insulin, and she immediately felt better. “It was like magic,” said Rie. “Before my body felt so heavy, I had no energy. After my diagnosis, I was so happy to know what was wrong with me.” 

An incorrect diagnosis of type 2 diabetes when you have type 1 diabetes is a serious misdiagnosis that can be avoided with a simple blood test. Recent studies show that up to 40% of adults older than 30 years with type 1 diabetes might have been misdiagnosed with type 2 diabetes.

Soon after her insulin therapy, her a1c went down to 7.4; now it’s 5.6. “It’s strange, but I love the smell of insulin,” said Rie. “Most people think it’s too medicinal or smells like a hospital, but I love it. I think my body was craving it.”

Less Common Signs of Diabetes

There were a few symptoms Rie had that she now sees she overlooked. Once, while receiving a pedicure, the attendant noted her feet were extremely dry. And then, during a dentist appointment, he commented on her inflamed gums—something he usually sees in heavy smokers or people with diabetes.

Inflamed Gums

Red, swollen, bleeding or receding gums could be signs of diabetes. According to the ADA, loose teeth, increased spaces between the teeth and dry mouth are also indicators of diabetes. Periodontal gum disease is the most common and severe mouth problem associated with the condition.

Dry Skin

If you notice your skin has become increasingly dry, this may be caused by high blood glucose. The American Academy of Dermatology notes poor circulation, or a skin infection that takes a long time to heal, might suggest the disease—also, dry red or brown skin patches or sudden blisters and wounds.

Family History and Type 1 Diabetes

Based on a recent study by the Juvenile Diabetes Research Foundation (JDRF), over 85% of people who develop type 1 diabetes have no relative with the condition. However, certain gene markers are associated with the T1D risk.

Rie revealed that her maternal grandfather was type 1, though she had never met him. That was the only family history of the disease she was aware of. Also, Rie did not have gestational diabetes (GDM) with her son Jack. Women with GDM may be predisposed to developing type 1 diabetes after giving birth. The ADA suggests pregnancy can identify women at risk of developing diabetes later in life.

Aside from her best friend’s husband, Rie was somewhat familiar with type 1 diabetes. A niece on her ex-husband’s side had juvenile diabetes from age 9. She’s now in her mid-thirties and having a baby. Rie saw what was involved with the condition on family vacations and knew what to expect.

COVID-19 and Type 1 Diabetes

A friend of Rie’s who works as an ER nurse asked if she had COVID and suggested a link between the coronavirus disease and autoimmune disorders like type 1 diabetes. Like most people, it was probable, but Rie couldn’t remember a bad bout of COVID during the pandemic. She received the Johnson and Johnson vaccine and both Pfizer and Moderna boosters without any side effects.

The National Institutes of Health suggests that suggests that the COVID-19 virus may trigger certain autoimmune disorders, including diabetes and other thyroid disorders, like Hashimoto’s disease. COVID can also mask DKA symptoms like nausea and vomiting. 

Treatment Moving Forward

Like any chronic disorder, adjusting to the new type 1 diabetes diagnosis comes with challenges. Yet, up to this point, Rie feels confident controlling her diabetes with her Dexcom continuous glucose monitor. “I haven’t needed to get a pump yet. I like feeling in control. I’ve had a Dexcom for about a year now, and it’s been a miracle, a game changer.”

When asked if she’s had to battle any high blood sugar levels or dangerous lows, she said she had a learning curve with drinking alcohol and dosing for insulin. Her drink of choice was a vodka tonic, which has little to no sugar.

“Once, on a family vacation, I wasn’t aware of the effects of alcohol, and my blood sugar dropped pretty low several nights in a row until I realized what was causing it. Now I’ll splash some cranberry juice in my glass or eat food as I drink, which helps stabilize my levels.”

JDRF recommends drinking alcohol on a full stomach when you have type 1 diabetes. Also, it would help if you eat as your drink. Having a high-protein, high-fat snack before bed is also important. Another preventative measure to guard against lows is to set an alarm to check your blood sugar in the middle of the night.

Since every person and every case of type 1 diabetes is different—you have to learn how certain foods, alcohol and exercise affect your blood sugar levels. Rie equates feeling hot to having high blood sugar and noted that oatmeal and rice are two foods that shoot her levels through the roof. She’s found an egg with toast or a turkey sandwich to be good choices for stabilizing her blood sugar.

Advice and Tips

When asked what advice she would give to someone who questioned their doctor’s diagnosis, Rie suggests people listen to their bodies. “Sometimes it takes a little more work to figure out what ails us, but when you do, you’ll feel so much better.”

Rie also found help on the internet in unlikely places. On Facebook, the groups “Diabetes for Beginners” and “Diabetes Type 1” provided her with a wealth of information. They gave excellent advice on anything I could possibly have a question about, and it was instantaneous. Someone is usually awake in the middle of the night and responds pretty quickly.”

As type 1 is often misdiagnosed as type 2, getting a second opinion is a good idea because the treatments are very different. Another study from Columbia University suggests that over 40% of adults who develop type 1 are misdiagnosed with type 2—that’s nearly half. Even individuals in their 70s and 80s can still develop type 1 diabetes.

The technology is so advanced it’s much easier now to control and manage the illness. Good management helps reduce the chances of developing complications. So, the bottom line is to know the facts and listen to your body!

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