Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community 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 Manager of Marketing at T1D Exchange.
Since my diagnosis 24 years ago I’ve seen 5 different endocrinologists. The first said I was too old to be a TYPE 1 and my ideal weight was…….. The second was at those medical trials, very informative and detailed (at first sight said I was 20-25 lbs underweight and a Type 1: later supported by labwork). Thanks to changing jobs/insurance saw several others, the last got me pumping but otherwise I’m not enthralled that because one is an endocrinologist (specialized in hormones) necessarily mean one is skilled in diabetic care.
My first doc was a general practitioner, while admitted a lack of experience we looked at my glucose readings and diet together and after 3 weeks on insulin moved me to meds than diet alone (I was the perfect TYPE 2: obese, ate and drank everything literally). He suggested carb counting, higher fiber diet, and of course if I wanted my feet cut off I could keep my 5-6 weekly cases of beer. Unfortunately he decided to die on me.
I moved 17 months ago, asked neighbors about local physicians. I see an older general practitioner who sends all his TYPE 1 and “poorly controlled” TYPE 2 diabetics to the local hospital/diabetic clinic. He’s never seen an insulin pump nor a CGM, but with all my a1C numbers, my control agreed if I was comfortable he’d follow my diabetic care. And when time for renewal sent the prescription for the new system, goes over all my lab work with a ton of questions.
So…. asking neighbors, kind of interviewing the doctor. The fun stuffs coming up, gonna ask for specific tests, trusting he’ll be open minded and agreeable. But than again the doc at those trials said I was the one controlling my diabetes, the doctor only sees lab work and hears my lies. They don’t cook for me, work with me, exercise for me, nor test my levels constantly. No doctor dictate my insulin usage, that changes too much to live a good life to wait for a quarterly annual visit. Must work for me, a1C is now 6.0 and having a ball! I’ll be surprised if not lower in 2 weeks.
If you use diabetes technology, one way to find someone who believes in it and uses it is to ask for the representative of your technology such as Dexcom, Medtronic or Tandem, and get the name of the that local rep, contact them and see if they can give you name of the person who for that company covers the zip code you are moving to. They will know who prescribes and who doesn’t. They know their area. If you are using diabetes technology and want a tech savvy provider, this is one way to do it.
Over the past 57 years I have changed my key advisor fairly often. My first was a general practitioner who actually didn’t know much about T1D. So I moved to a specialist. Since then I’ve tended to change when the consultation became too repetitive around the simple facts or around his special interest, one was very keen on inhaled insulin. I’m currently considering a change after the longest period with one specialists as I suspect I may need help dealing with T1D related, but not specific symptoms. For example, I’ve tried cardiac, neuro and psychological specialists exploring possible causes of actually fairly minor but possibly significant issues that are probably common to most octogenarians
I called the large hospital near my apartment (most will have a “find a doctor” search on their site) and told them I had Type 1 diabetes and needed an endo, and made an appointment. I ended up with a fantastic endo and saw her for 15 years. Last year my insurance decided that hospital was out of network so I had to find a new one. Called another large teaching hospital nearby and told them I had Type 1 and needed an endo. As I was talking to the person I was also scrolling through the website because some that she was recommending were not diabetes specialists. I ended up with my current endo who I also like.
When I moved from Springfield to Boston,Ma I contacted Joslin Clinic to make an appointment. That was in 1996 and have continued having Joslin physicians overseeing my T1D since then.
I went to Joslin in Syracuse, after spending a week in the educational component of Deaconess Hospital and Joslin in Boston. I loved the Syracuse Joslin Clinic.
I just move to my new community 6 months ago. I started asking around and doing internet research, especially hospital/clinic systems in the area. There are NO endocrinologists in the area and only ONE nurse practitioner who specializes in endocrinology. The NP is booked out at least 6 to 8 months. In July, I made an appointment for this January and asked to be put on a wait list for an opening. I was fortunate to get an opening in early October. For the first visit, she was wonderful. Now I will have to get to know her better.
I would take advantage of all resources- insurance coverage for providers would be 1st step. Then vetting through reviews and other sources such as area JDRF etc.
First, I check to see which Endocrinologists are covered by my health insurance. Then I checked internet sites for doctor ratings. In my current case, I ended up going to a nearby hospital Endo office because all of my medical services are covered by this hospital. Since I started with them, ten years ago, I’ve had four different providers, two doctors and two APRN’s.
I do miss Joslin.
First I look at endos who are covered by my insurance. I then look at endos who are in my general area. I could then if I wanted to ask on diabetes websites for anyone to recommend a provider who met met my first two criteria.
I’ve called clinics my insurance works with and ask questions about the endo’s there to help find one that’ll work with me and my type 1 management style.
First, I would ask my current endo for a recommendation.
Second, I would ask the insurance company for recommendations.
Third, I would ask diabetes community for recommendations
And I would also want to interview all of the endo’s. I would want to know how they treat patients like me. Their philosophy is the use of medicine rather than make lifestyle changes, like diet and exercise. How are patient’s vitamin and minerals measured ( i was low in vitamin b1 and b12)?
Do they conduct in research, in what areas?
When I moved to the Seattle area, my father who was a doctor, recommended I go to the University of Washington Diabetes Care Center. One of the top national Endos is still at that clinic. My dad suggested I try to get to be that doctor’s patient. I ended up with another Endo, who I saw for about 20 years until she retired. She passed me on to another doctor in that clinic. I really like the University of Washington Medical Center and all its aspects and clinics. They are a teaching and research hospital system so they often have the latest medical information. They also pass on the information and savings on medications to the patients. I’ve had to use several specialty clinics, neurosurgery, transplant care, and ophthalmology. I would recommend them to anyone in the Puget Sound Region.
If I was to move to another area or state, I would look for a medical system like the UWMC.
My experience with referrals has been terrible. Ones from my PCP resulted in Dr’s that had been retired for 1-5 years, no longer in the area, not accepting new patients…let alone in network. I’d much more rely on word of mouth from other T1s or sources like the Loop and Learn group website that has established a patient referral list of good Endo’s/Docs/NPs based on first hand knowledge!
While I think all the comments are great. There is one thing that no one has mentioned—the ability for you to be the captain of your medical team. There could be a host of other medical professionals involved in your care and you have to be the one to set the tone with guidance and advice from all these different sources. And be able to question them and advocate for your own life choices. A long time ago, I saw an endo who wanted to dictate everything around his plan for managing my disease. While he had impeccable creds and was thought very highly by others, I couldn’t accede to his demands. I was working a 4-midnight shift and he wanted me to eat at 6 pm every night. When I told him I would try but make no guarantees he told me that was the only way he could manage my disease. I told him, I am managing my disease and you are an advisor. I then went elsewhere.
My first 20 years T1D I never saw a “specialist”.. Then I moved across country and asked at the local Hospital and they gave one local Endo name to me… like the guy you described… The next 50 years I have been my specialist!!! I do not have any so called T1D problems..
I chose all of the above. I’d be willing to travel farther for a really good provider though. Thankfully, I’ve always lived in larger population areas.
I am with my current Endo because of the word of other T1D’s who told me about the office and great group of doctors – Had my GP make the referral, and have been with this doctor/group for over 10 years now.
I am not moving for sure. But i would network everything in my power before choosing a new endo. in town or out so I know everything I can about my options. I
am not shy and would go out of my way to find online or in person ways to meet others with T1D.
Referral, Call or search through my health insurance provider, choose whichever endo clinic is easily accessible. I also would check credentials and specialities of endocrinologists in the area.
Since my diagnosis 24 years ago I’ve seen 5 different endocrinologists. The first said I was too old to be a TYPE 1 and my ideal weight was…….. The second was at those medical trials, very informative and detailed (at first sight said I was 20-25 lbs underweight and a Type 1: later supported by labwork). Thanks to changing jobs/insurance saw several others, the last got me pumping but otherwise I’m not enthralled that because one is an endocrinologist (specialized in hormones) necessarily mean one is skilled in diabetic care.
My first doc was a general practitioner, while admitted a lack of experience we looked at my glucose readings and diet together and after 3 weeks on insulin moved me to meds than diet alone (I was the perfect TYPE 2: obese, ate and drank everything literally). He suggested carb counting, higher fiber diet, and of course if I wanted my feet cut off I could keep my 5-6 weekly cases of beer. Unfortunately he decided to die on me.
I moved 17 months ago, asked neighbors about local physicians. I see an older general practitioner who sends all his TYPE 1 and “poorly controlled” TYPE 2 diabetics to the local hospital/diabetic clinic. He’s never seen an insulin pump nor a CGM, but with all my a1C numbers, my control agreed if I was comfortable he’d follow my diabetic care. And when time for renewal sent the prescription for the new system, goes over all my lab work with a ton of questions.
So…. asking neighbors, kind of interviewing the doctor. The fun stuffs coming up, gonna ask for specific tests, trusting he’ll be open minded and agreeable. But than again the doc at those trials said I was the one controlling my diabetes, the doctor only sees lab work and hears my lies. They don’t cook for me, work with me, exercise for me, nor test my levels constantly. No doctor dictate my insulin usage, that changes too much to live a good life to wait for a quarterly annual visit. Must work for me, a1C is now 6.0 and having a ball! I’ll be surprised if not lower in 2 weeks.
If you use diabetes technology, one way to find someone who believes in it and uses it is to ask for the representative of your technology such as Dexcom, Medtronic or Tandem, and get the name of the that local rep, contact them and see if they can give you name of the person who for that company covers the zip code you are moving to. They will know who prescribes and who doesn’t. They know their area. If you are using diabetes technology and want a tech savvy provider, this is one way to do it.
Great idea. I have never seen it suggested. Thanks.
This is brilliant!
Over the past 57 years I have changed my key advisor fairly often. My first was a general practitioner who actually didn’t know much about T1D. So I moved to a specialist. Since then I’ve tended to change when the consultation became too repetitive around the simple facts or around his special interest, one was very keen on inhaled insulin. I’m currently considering a change after the longest period with one specialists as I suspect I may need help dealing with T1D related, but not specific symptoms. For example, I’ve tried cardiac, neuro and psychological specialists exploring possible causes of actually fairly minor but possibly significant issues that are probably common to most octogenarians
I called the large hospital near my apartment (most will have a “find a doctor” search on their site) and told them I had Type 1 diabetes and needed an endo, and made an appointment. I ended up with a fantastic endo and saw her for 15 years. Last year my insurance decided that hospital was out of network so I had to find a new one. Called another large teaching hospital nearby and told them I had Type 1 and needed an endo. As I was talking to the person I was also scrolling through the website because some that she was recommending were not diabetes specialists. I ended up with my current endo who I also like.
When I moved from Springfield to Boston,Ma I contacted Joslin Clinic to make an appointment. That was in 1996 and have continued having Joslin physicians overseeing my T1D since then.
I went to Joslin in Syracuse, after spending a week in the educational component of Deaconess Hospital and Joslin in Boston. I loved the Syracuse Joslin Clinic.
Anyone have a recommendation for an endocrinologist (Whole food, plant based believer) in the Dallas area?
I just move to my new community 6 months ago. I started asking around and doing internet research, especially hospital/clinic systems in the area. There are NO endocrinologists in the area and only ONE nurse practitioner who specializes in endocrinology. The NP is booked out at least 6 to 8 months. In July, I made an appointment for this January and asked to be put on a wait list for an opening. I was fortunate to get an opening in early October. For the first visit, she was wonderful. Now I will have to get to know her better.
With Medicare advantage you need to research in network physicians. Then you can research each provider individually.
I would take advantage of all resources- insurance coverage for providers would be 1st step. Then vetting through reviews and other sources such as area JDRF etc.
First, I check to see which Endocrinologists are covered by my health insurance. Then I checked internet sites for doctor ratings. In my current case, I ended up going to a nearby hospital Endo office because all of my medical services are covered by this hospital. Since I started with them, ten years ago, I’ve had four different providers, two doctors and two APRN’s.
I do miss Joslin.
First I look at endos who are covered by my insurance. I then look at endos who are in my general area. I could then if I wanted to ask on diabetes websites for anyone to recommend a provider who met met my first two criteria.
I’ve called clinics my insurance works with and ask questions about the endo’s there to help find one that’ll work with me and my type 1 management style.
First, I would ask my current endo for a recommendation.
Second, I would ask the insurance company for recommendations.
Third, I would ask diabetes community for recommendations
And I would also want to interview all of the endo’s. I would want to know how they treat patients like me. Their philosophy is the use of medicine rather than make lifestyle changes, like diet and exercise. How are patient’s vitamin and minerals measured ( i was low in vitamin b1 and b12)?
Do they conduct in research, in what areas?
I will not be moving again thank heaven.
I would first look to see if there was a nearby provider listed on this website to ensure I find a provider that accepts patients using DIY Loop: https://www.loopandlearn.org/hcp-recommendations/
If I didn’t find a suitable provider at the above site, I would try looking at this list: http://juiceboxdocs.com
Makes two of us. I recommend Loop and Learn as well!
Besides asking my current endocrinologist, I would ask my primary care physician for recommendations. Then I would do further research on my own.
When I moved to the Seattle area, my father who was a doctor, recommended I go to the University of Washington Diabetes Care Center. One of the top national Endos is still at that clinic. My dad suggested I try to get to be that doctor’s patient. I ended up with another Endo, who I saw for about 20 years until she retired. She passed me on to another doctor in that clinic. I really like the University of Washington Medical Center and all its aspects and clinics. They are a teaching and research hospital system so they often have the latest medical information. They also pass on the information and savings on medications to the patients. I’ve had to use several specialty clinics, neurosurgery, transplant care, and ophthalmology. I would recommend them to anyone in the Puget Sound Region.
If I was to move to another area or state, I would look for a medical system like the UWMC.
When I moved I tried to search out a teaching hospital with endocrinologists. They were usually attached to a University.
My experience with referrals has been terrible. Ones from my PCP resulted in Dr’s that had been retired for 1-5 years, no longer in the area, not accepting new patients…let alone in network. I’d much more rely on word of mouth from other T1s or sources like the Loop and Learn group website that has established a patient referral list of good Endo’s/Docs/NPs based on first hand knowledge!
I always choose an endocrinologist associated with an academic medical institution.
While I think all the comments are great. There is one thing that no one has mentioned—the ability for you to be the captain of your medical team. There could be a host of other medical professionals involved in your care and you have to be the one to set the tone with guidance and advice from all these different sources. And be able to question them and advocate for your own life choices. A long time ago, I saw an endo who wanted to dictate everything around his plan for managing my disease. While he had impeccable creds and was thought very highly by others, I couldn’t accede to his demands. I was working a 4-midnight shift and he wanted me to eat at 6 pm every night. When I told him I would try but make no guarantees he told me that was the only way he could manage my disease. I told him, I am managing my disease and you are an advisor. I then went elsewhere.
My first 20 years T1D I never saw a “specialist”.. Then I moved across country and asked at the local Hospital and they gave one local Endo name to me… like the guy you described… The next 50 years I have been my specialist!!! I do not have any so called T1D problems..
I chose all of the above. I’d be willing to travel farther for a really good provider though. Thankfully, I’ve always lived in larger population areas.
I am with my current Endo because of the word of other T1D’s who told me about the office and great group of doctors – Had my GP make the referral, and have been with this doctor/group for over 10 years now.
I would use the World Wide Listings at http://www.insulin-pumpers.org/pumpdocs.cgi
I am not moving for sure. But i would network everything in my power before choosing a new endo. in town or out so I know everything I can about my options. I
am not shy and would go out of my way to find online or in person ways to meet others with T1D.
We are retired Air Force and I have gone to the Diabetes Center of Excellence at Wilford Hall for 23 years.
Referral, Call or search through my health insurance provider, choose whichever endo clinic is easily accessible. I also would check credentials and specialities of endocrinologists in the area.
I would also check with my local JDRF/ADA for recommendations!