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 were diagnosed with T1D as an adult, on a scale of 1-5, how easy or difficult was it to find an endocrinology clinic near you? (1 = the easiest, 5 = the most difficult) Cancel reply
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I was diagnosed w T1D when I was 7 years old in 1965. Depending on where I live and employer insurance, sometimes the availability of an endocrinologist is difficult.
N/A as I was Rx’d in 1951. May’ve been only 1 or 2 “Endocrine Clinics” in the entire country at that time. ¯\_( ͡❛ ͜ʖ ͡❛)_/¯
Finding an endocrinologist is difficult. Finding one whose mind can embrace the concept of an adult having autoimmune diabetes rather than automatically assuming it is T2, or like T2, or like a T1 without any functioning beta cells? To find someone willing to deal with my reality? Nigh impossible. The mantras of the false dichotomy and the boilerplate “obesity related” drown everything out.
Yes, I never heard of such a place back then !!
You would think that a town/city of 145k residents would have more than one endocrinologist… Needless to say with only one endo in town, appointment scheduling is a little crowded….
I was seven when I was diagnosed so the question doesn’t apply to me. There are several endos in my city of about 200,000 but still it is difficult to find one accepting new patients!
Other. I was dx’d as a child at age 8 and I was treated by Internal Medicine doctors in the places I lived during childhood, teen, and college years. I did not see an endocrinologist for diabetes care until age 24.
I chose #3. I guess it depends upon how you determine what is difficult. I don’t remember for sure when I discovered what an Endocrinologist is.
I became a diabetic in 1977, and met my first Endocrinologist in 1986, when I went to the Joslin Clinic in Boston. At that time, I was living in northeastern New York, Adirondack mountains. The closest Endocrinologists to me was either Burlington, Vt, about 2 hrs away, or Syracuse, NY about 5 hours away. I chose Syracuse because is was the Joslin Clinic. Also, I don’t remember whether at that time Burlington Vt had an endocrinologist, or whether I was aware of it. Going to see the Endocrinologist became a full day trip, sometimes staying over night, sometimes starting at 5 am, and getting home at night. I did that from about 1987 through 2012.
You would think in Northern VA/DC there would be no problem finding a highly recommended Endo, PA, NP wouldn’t be a problem. Of the list of Endocrinologists my PCP provided, 2 had quit practice, 3 didn’t take Medicare/Tricare, and 2 weren’t taking new patients. I learned finding a doc is easy, finding a highly recommended doc that is a good fit is a chore. I’m still looking for one relatively nearby and a good fit for my outlook on treatment, have another appointment this week; I’m hoping he works out!
I have tricare as well. Got lucky that UT Southwestern takes it!!
Diagnosed at a teaching hospital with endo and CDE, an educator, not an actual diabetes clinic. Had wonderful care.
The hospital I was diagnosed in operates a Diabetes Center. It’s staffed with diabetes educators, nurses and nutritionists. It is medically overseen by my endo. So for me it was just part of the natural process of getting t1d.
If you live in a city with a medical school not difficult
Not necessarily. The doctors who have insisted I couldn’t possibly be anything but T2 have always prefaced the comment with “and I teach at the University of Wisconsin medical school. “
Yes! I’ve ended up going to UT Southwestern and I love it.
When I was diagnosed in 1976, I lived near a major metropolitan area and had no problem finding an endocrinology clinic and diabetes experts nearby. When I retired to semi-rural Florida nearly 20 years ago, I discovered there were no board-certified endocrinologists in my County. That is still true. I have been travelling 25 miles to visit the nearest endo in the next county. I have repeatedly struggled with this endo’s office to obtain the detailed case notes that Medicare requires for increased test strips (preCGM) and now increased pump supply frequency due to insulin absorption issues that began to surface last June. I have been trying since July to get that frequency changed from every 3 days to every 2.5 days so I don’t run out of pump supplies. Although he wrote the RX for increased site frequency, his clinical notes have not provided the supporting documentation to obtain Medicare’s approval. I’ve elected to change endo (to a multi-endo practice 45 miles away) but the earliest appointment I could get is Feb 22, 2022. I’ll keep my early February appointment with my current endo to assure Medicare will still pay for my pump supplies (must be seen every 90 days per Medicare guidelines) and continue to work with his office in the interim in an attempt to obtain Medicare approval for more frequent site changes. If I lived in a more urban area, I would have more options for more Medicare-savvy endos that could help me maintain my previous good control.
I have never found an endo that helped. It was always a conveyor belt type situation. I prefer to see a CDE for an hour and PC for scripts and labs
Was extremely blessed
Went right away to the Wash State UW Diabetic care center Dr Irl Hirsch is my endo
One of the best Diabeticion DRs anywhere
Diagnosed as LADA & do research programs at the same facility for the last 20 years
I’ve been going to the UW DCC as well for the last 25 years. It is a great clinic and the whole UW Medical Center has provided world-class care for many of my health issues.
I saw Dr. Ira Hirsch when he was a fellow at Washington University School of Medicine St. Louis and did several research studies with him. He is fabulous.
It was 1983 and I suddenly couldn’t see the students in the back of the classroom, lost weight, drank water from the shower etc. My daughter had a biology course where she learned about diabetes and said mom, this is it. After a urine strip test I had to find a doctor immediately not in six months. Dr. Hsu from Hopkins saw me at his office at 10 PM. The next day he gave me insulin. I felt he saved my life.
https://care.diabetesjournals.org/content/44/11/2449
We are the majority
I was diagnosed as an infant, but it was still hard to find an endocrinologist near by, the one I see now is 30 miles away.
what is your age now ?
T1D was my 40th birthday present after a five-hour fasting glucose test that ranged 35-350. My GP put me on an 1100 calorie/day diet. I lost 35 lb in a few weeks: I was 145 when I started. Five years later, my annual A1C was 12, and he sent me to another doctor, who said he had no idea what to do. The nurse overheard, and I as I left in tears figuring I was going to die, she said there’s a doctor at OHSU who can help. I’ve been seeing him every 3-4 months for 30 years. It’s a 186 mile round trip and is a carefully calendared event. He is the head of endocrinology at a teaching hospital. I don’t know what I’ll do when he retires in two years.
Couldn’t have been easier-The clinic was in the building where I worked. A diabetic colleague diagnosed me with his own blood sugar meter and I was able to be seen in the clinic the next day. I was very lucky!
NA for me. Dx at age 11 in 1982. It will be 40 years this coming January. I was kicked out of the pediatric diabetes clinic after my first year of nursing school.
Easy. Dallas and Fort Worth have many to choose from thank goodness.
In 1975 I hardly knew what T1D was, except a PITA. The HMO I belonged to at the time supplied the necessary medical care. It didn’t seem as in depth as it does now.
I had a regular internist who specialized in cancer for 20 years. I live in Alaska. The nearest Endo was probably 6 hours away although probably visited our town which I never heard about. When I moved I found out about an Endo who traveled to where I live, by chance. He put me on a pump and CGM.
My diabetes education came out of the public library and a diabetes “newspaper” to which I subscribed that came out of California.
I lived in small communities most of my adult life. No endocrinologists anywhere nearby. Most of that time, people had never heard of an endocrinologist.
When I was diagnosed at age 32, there were no endocrinologists in town and I simply stayed with my GP, so I answered #5. However, if I were to answer this upon diagnosis today, I would say #1 because there are two in town and they are both great. I have been with my endo for over 25 years and feel so fortunate to have him as my primary doc.
I said 5 but there wasn’t one 36 years ago and there still isn’t one in Anchorage Alaska.
I was diagnosed at 40, first with T2, and was treated by my PC. I got frustrated with the lack of control I was achieving, and asked for a referral to an endo. That was easy-the hard part was driving the 30 miles into DC to (then) Walter Reed Hospital with the crazy DC traffic! (You may have guessed we were military). She diagnosed me with LADA. Then I was able to transfer to the (military) Diabetes NP who has office hours in the local military clinic, and I’ve been set since. I moved to a more rural community 4 years ago, and there is one endo. Luckily, she has a NP that takes most of the diabetes patients. I’ve been very pleased.
I can’t say near me. I drive 1.5 hours to Philadelphia to the U of PA. I don’t care for the endocrinologist in my area. It was very easy, since I already had a connection out there with my 2 sons.
Appointments are made through my HMO.
When I was diagnosed 39 years ago, I lived in the Northeast megalopolis and had my pick of endos. But since, I spent 10 years in north country NY, and had to travel 45 min. to nearest one.
After my dx at thirty, the Endo clinic I was referred to was a mile away from my house. I eventually decided to have all my different doctors within the same University hospital and had no problem finding an Endo clinic there, about twenty minutes from my house. It was quite easy and I could change it again easily if desired in this metro area with many many hospitals.
I was covered under university HMO-style health plans after dx at age 28, and they all basically refused to give me a referral to an endocrinologist. It was only after changing jobs and with that to a private insurer that I finally, FINALLY got a referral to Joslin. How long? TWENTY YEARS. So yeah, I guess you’d say it was difficult–not the finding but the getting access.
My GP dx-ed me. He treated me for 5 years. After waking up in the ER for the 3rd time with low BG, I demanded a referral to an endo. I was referred to a Doc I didn’t like. About 18 months later I found a much better one closer to home. When I retired I was able to find a good Endo, but 30 miles from home. So, I clicked.on 3.
I picked 5 not because an Endo was far away but because I called 4 and pleaded but they all said they couldn’t take new patients. A friend got me into her mother’s because someone cancelled an appointment.
I was already seeing an endocrinologist because I was diagnosed T2D before being diagnosed as T1D
I was a 19 years college student when I was diagnosed and had no insurance. In 1987 I had no way of getting insurance on my own, so I didn’t even look for an endocrinologist. I actually didn’t see ANY doctor for the first 10-11 years after diagnosis because I couldn’t afford to pay out of pocket. I was approved for temporary Medicaid while in the hospital but it ran out after 3 months and they said I was no eligible to keep it because I lived at home.
I did see the pediatric endocrinologist (I was 19 but they still had me in the children’s ward) who treated me in the hospital one time after I was discharged so I know there were options nearby.
I was diagnosed DKA and really wasn’t in good mental shape to choose where to go for treatment. There is only 1 endocrinology clinic in our town and in hindsight that is where I should have gone. But because my internist correctly identified me as Type 1/LADA, I opted to continue my treatment with that practice. Unfortunately, I did not get much help in adjusting and administering insulin doses and learning about all the basic practices and the pitfalls associated with diabetes management.
I don’t think there was such a place 68 years ago !!