Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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If you have at least one diabetes-related complication, for how many years had you been living with T1D when you were diagnosed with the first complication? Cancel reply
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Hypothyroid, not exactly a complication.
Rx’d in 1951. Proliferative diabetic retinopathy (PDR) in 1975. Proliferative diabetic neuropathy (PDN) in 2019, gastroparesis in 2020. Life’s been that Forrest Gump box of chocolates — you never know what you’re going to get. Life is good and modern technology gives you a much better chance of getting some really, really good chocolates, however. ≧◠ᴥ◠≦✊
Some retinopathy right eye treated with laser and left eye with drops. Right eye it’s not there, left eye barely there.
Doctors avoid diagnosing complications because it causes their ratings to drop. Doctors and HMOs receive ratings based on patients A1C, number of cancer screenings, and number of patients with complications. So my shoulder may be frozen, my feet numb, but no diagnosis or even mention will appear in my medical records.
About 7 years after diagnosis I was informed that I’d developed diabetic retinopathy, which was ‘picked up’ at a routine examination to see my opthalmologist. I began receiving laser therapy just over one week later, and this has been ongoing now for more than 30 years.
Within two years of that original diagnosis, I started feeling ‘stabbing sensations’ within both of my feet and lower legs. I reported this to my diabetes support team and they arranged for me to undergo testing to determine whether I’d developed peripheral neuropathy I had. For about the last 25 years I haven’t been able to feel my feet or lower legs.
I’ve subsequently gone on to develop of other diabetes-related complications, such as autonomic neuropathy, and severe cataract formations which have resulted in me requiring to have my own lens removed, and replacement plastic lenses inserted.
It was so encouraging to see the graph of no complications being the highest percentage on the bar line. Happy 100th birthday to insulin this year!
I marked N/A by mistake. I should have marked no complications to date after 64 years. I am a healthy individual who happens to have diabetes.
I marked other. I have hypothyroidism and adhesive capsulitis of all of my large joints. The joint issues have been a bit of a problem, difficult to move the arms and legs some days. It is not RA and has been described as though cement has been poured in and around my joints. I have had several surgeries to loosen up the joints but this is only a temporary fix that lasts about 6 months. These are all autoimmune disorders, so technically not complications. I have had T1D for approximately 45 years.
31 years and no complications yet.
Hashimoto’s Syndrome and early cataract replacements
I started getting hypersensitivity in my big toes when I was about 32 years old. I had had diabetes for about 23 years. I wasn’t diagnosed as most physicians didn’t know much about T1D or the complications. I have had T1D now for 66 years.
T1D for 31 years and no complications. I agree with and support Gloria Miller’s comment “I am a healthy individual who happens to have diabetes”.
I did recently listen to the Juicebox Podcast episode #531, After Dark: Diabetes Complications and it scared the (insert your favorite swear word) out of me. I don’t think I’ll listen to the remaining 42 minutes as I got the point, complications are real and they’re devastating and we should always try our best to stay in range to prevent, delay, minimize them. The thing is perfection doesn’t exist, so don’t beat yourself up, stay positive and keep learning this crazy game of T1D.
Hypothyroidism 13 years in
hypertension 17 years in.
Dx T1D in 1955. Proliferative diabetic retinopathy in 1979.
I was diagnosed with a diabetic ‘snowflake’ cataract this past year after 55 years of T1D. Cataracts also run in my family with both my mother and father requiring them to be removed (neither parent was diabetic). Not sure the cataract is diabetic-related but I did develop it 10 years sooner than my parents. Some of it could be genetic and environment (working in an extremely hot office resulting in my eyes drying out to the point of inflammation). A1C has always been below 7 although my BGs wildly rise and fall (brittle diabetic used to be the term).
Had adhesive capsulitis (frozen shoulder) after 20 years, cataract surgery in both eyes after about 35 years, and coronary artery disease after 55 years.
10-19, but that was in 1980, retinopathy and proteinuria (early kidney injury) present after 12 years – but that was prior to fingersticks. First A1c I ever had was around 10 in 1979 or so. Since early 1982, A1c’s have been averaging around 6.5, last 5 years 6.2. And the retinopathy (background, minimal not vision threatening) never progressed, and the protein in the urine went away.—————– Punchline- good BG control WORKS. It is work, but it works. It saves lives and preserves health.
After ten years I developed frozen shoulder, but it improved greatly then resolved after physical therapy. It was quite interesting to use your non dominant hand for things requiring dexterity. I didn’t think brushing my teeth would be so difficult at first.
Two years after that I had my first DKA, most likely due to neurosurgery. ‘Just had a short hospital stay.
I have had life long problems with digestion that I never saw a doctor for, but after being diagnosed with T1D it is now listed as gastroparesis due to T1D. ?!
Had my first dilated eye exam in 1981 – almost 20 years after being diagnosed at age 9 and a life time of inaccurate urine testing and an inconsistent course of one or two shots of NPH or Lente insulin a day. I had background retinopathy that was edging toward being proliferative, and since I wanted to get pregnant, the endo team I was seeing advised me to get my eyes treated NOW (then) and work toward getting my BG stabilized using CHO counting, MDI and home BG monitoring. In 1981-82 had a series of lasers in both eyes, and was sent to The Diabetes Self-Care Program in NYC where I really learned to live with my diabetes by counting carbs, monitoring my BGs and doing my best to avoid rollercoaster episodes of hypo/hyperglycemia. It was the early days home glucose monitoring with an Ames glucometer. Up to that point I had no idea what my BG were doing.
My eyes stabilized with the laser treatments in 1982 and have been quiet ever since with no further retinopathy. Eventually over the course of time, I developed frozen shoulder in my mid-30s, overt symptoms of peripheral neuropathy in my hands and feet in my mid-40s, and pronounced osteopenia leading to stress fractures and Charcot osteo-arthropathy changes in my feet in my early 50s.
Nobody ever mentioned or talked about any of these subtle or progressive neuropathic changes in my hands and feet until they were quite advanced and had been mislabeled and misdiagnosed by several MDs that I consulted. Finally an astute orthopedic physician performed an MRI and determined that I had early stages of Charcot osteo-arthropathy in my R foot and I was able to receive appropriate treatment to keep it from progressing. His excuse for the months of misdiagnosis on behalf of his colleagues was, “We aren’t used to seeing it this early”, and he relayed that usually they see a Charcot foot that looks like a swollen football with collapsed boney deformities and open ulcers. That was not what my foot looked like – originally I was diagnosed with sprain/strain injury and tendonitis, and over a period of four months my foot was not healing the way it needed to heal. Long story short, once the problem was properly diagnosed for what it was, appropriate treatment and preventive care was initiated and my foot healed, albeit with some residual deformity. I now wear sensible shoes with custom inserts and my feet are healthy and functional.
The comorbid conditions that can happen over a lifetime with T1D are insidious and progressive. They can occur at any time and are often missed or mistaken for something else. For example, it’s not about getting a gangrene infected toe or foot from a blister – more likely the ligaments and boney structure in the foot of a fairly active person (like a runner, or a mailman, or a nurse, an athlete, dancer, truck driver, etc) with advanced duration diabetes has sustained a stress fracture injury and because of neuropathy does not feel the warning sign pain signals and continues to walk, run, climb stairs, do whatever they do on a daily basis.
We must all learn to pay attention to the subtle physical change warning signals in our bodies – and face the fact that we are vulnerable to challenging comorbid conditions (I hate using the word “complications” to refer to these conditions that can occur due to diabetes – I prefer to call them “comorbid challenges”).
Face it PWDs – they happen. We all live in challenged bodies. It doesn’t make you less of a person or “a bad diabetic” to have retinopathy, or neuropathy, or progressive kidney changes, or Charcot feet. You have not failed and it is not the end of the world. Our bodies age and fall apart the more fully we live life – and we all know that living life with T1D makes us more more prone to up and down outcomes and is a super challenge for all of us. I joyfully celebrate the fact that several us have made it into our senior years having lived with T1D for 30, 40, 50, 60 plus years – and we keep on truckin’.
Thank you for taking the time to read this “diatribe”. Hopefully these words will serve to help someone facing comorbid challenges.
Trigger finger and frozen shoulder – not something like major organ damage.
I was developed frozen shoulder a few years ago, about 23 yrs post my T1D diagnosis. I actually didn’t know that was considered a diabetes complication until seeing related questions in this forum!
I was diagnosed with Hashimoto’s and had other joint issues in the years following the birth of my kids (~15 yrs post T1D). Diagnosed with dry eyes this year. Other autoimmune/feisty immune system challenges, rather than complications?
I’m current 26 yrs post diagnosis. Luckily, none of the classic complications yet.
Nice to hear everyone’s experiences, successes and perseverance!