My Type 1 Diabetes Diagnosis
I was diagnosed as an adult while living away from home. I had all the classic symptoms: the 4 T’s, but had no idea that they could be caused by an illness.
Type 1 Diabetes Symptoms
I couldn’t figure out why I was so thirsty but as far as I knew no one, who drank gallons of water, died from it. Running to the toilet to pee all the time made sense because I was drinking so much. I thought I was so tired because I was working part time unsociable hours and, in my mind, the dramatic weight loss (thin) was so impossible I decided it was all in my head.
I thought all the symptoms would all go away! Only a friend made an offhand remark about how I was drinking so much that it could actually be diabetes that I looked for medical help. By the time I was admitted to hospital I could barely stand, walk or talk and had lost so much weight I looked like a skeleton.
Within 15 minutes of arriving in A&E I was in an exam cubicle, blood drawn and hooked up to IV fluids. Forty-five minutes later the bag of fluids was empty and a new one went up.
By the following morning my life had changed forever and it took me several years to find my confidence to go back out into the world as an independent adult.
Had my friend not made that comment she doesn’t even remember who knows how many days would have passed before I was discovered unconscious in my bedroom, or worse. It’s a scary thought!!
Adults with Type 1 Diabetes - I hear you!
In the last fourteen years I’ve met so many other people with type 1 diabetes diagnosed in their late twenties, thirthies, forties and beyond who are made to feel so alone and isolated at diagnosis because they are told an adult diagnosis is rare. So they feel that they are different because other people with type 1 have lived their entire childhood with it.
I want you all to know that I know you are out there and encourage you to share your story.
JDRF.org Symptoms of type 1 diabetes in adults
Why is this important?
Under normal non Covid circumstances, early signs of Type 1 diabetes in adults are usually brushed off or mistaken for something else anyway with people often misdiagnosed.
But we are living in covid times and we are not socialising as much as we normally would so it’s less likely that symptoms, especially in adults living alone, would be picked up.
We have no data on the rates of hospitalisation or DKA at diagnosis in adults.
Irish research published in 2020, showed that
54% of the type 1 diabetes diagnosis happen in people over the age of 35 years and
67% of people diagnosed with type 1 diabetes are over the age of 25 years
31% of those diagnoses were in people aged 0 - 24 years (Gajewska, 2020).
Source: Gajewska. K, 2020, Epidemiology of T1D in Ireland
The Irish study corroborates the 2017 research by the University of Exeter Medical School and UK BioBank revealed that 50% of all people diagnosed with type 1 diabetes were over the age of 30 years and findings from the few similar studies done that include all of the type 1 adult population as well as research from other countries. And incidences of misdiagnosis in adults are on the rise.
I wrote last summer on how ignoring this information puts many people in harm's way by reinforcing inaccurate information. And in addition to this I feel that type 1 diabetes symptom campaigns that ignore the fact that adults get type 1 diabetes makes those adults feel isolated and alienated from the diabetes community and may be reluctant to look for emotional and physical support. 😢 I expected more from diabetes organisations but am not surprised.
Further Reading and Research if you’re interested
“Although it used to be referred to as ‘juvenile diabetes’, around half of newly diagnosed cases are in people over the age of 18” from JDRF UK
“Type 1 diabetes is not predominantly a ‘disease of childhood’ as previously believed, but is similarly prevalent in adults, new research published in the Lancet Diabetes & Endocrinology shows.” Dec 1, 2017. From UK BioBank
“Type 1 diabetes as common in adults as children, but many adults are misdiagnosed, UK Biobank data shows” also from UK BioBank
“Frequency and phenotype of type 1 diabetes in the first six decades of life: a cross-sectional, genetically stratified survival analysis from UK Biobank from The Lancet
38 percent of adults with type 1 diabetes are misdiagnosed with type 2 May 2019