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    • 14 hours, 15 minutes ago
      Jeanne McMillan-Olson likes your comment at
      If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)
      The hospital made me disengage my pump and promised to monitor my BG. After 10 hours with an incorrect basal my BG was high and going up. No nurse or doctor was available to administer insulin. I finally reinstalled my pump and forced the hospital to acknowledge that they could not monitor my BG. After appealing to the hospital Board, after my stay, they started using CGM's in all the wards for diabetic patients.
    • 14 hours, 16 minutes ago
      Jeanne McMillan-Olson likes your comment at
      If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)
      During my hospitalizations for cardiac issues, my endocrinologist (who does not do hospitals) told the attending endo that I was capable of managing the diabetes. I was allowed to mange pump and CGM without any problems. For one stay, I had a pump-using T1D nurse. This was the premier cardiac hospital in the western part of my state, so their handing of diabetes may be more advanced. There are two rules for handing the type 1 diabetic in a hospital setting. 1) Never separate the Type 1 diabetic from his or her insulin. 2) Let the expert in the room handle the diabetes. And bring your own supplies, because the hospital will not have pump supplies, CGM replacements, or your insulin.
    • 15 hours, 7 minutes ago
      Jan Masty likes your comment at
      Have you (or your loved one with T1D) been diagnosed with retinopathy?
      No retinopathy... But AMD both eyes last 2 years...No treatment available... Unable to wright... bareley able to read only large type... use the talking guy hideing in my computer to read for me... Almost 91 years OLD.... 70 years T1D...
    • 15 hours, 34 minutes ago
      mojoseje likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      I didn't have a stopwatch out, but it was about 12 to 15 minutes. There was a lot to go over (new devices, etc.). I probably got everything I needed, but, for some reason, I always feel rushed at this office.
    • 15 hours, 47 minutes ago
      KarenM6 likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      It was so long ago, I don't remember...
    • 16 hours, 39 minutes ago
      Janis Senungetuk likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      It was over 20 minutes but since my Endo has me so well Regulated (A1c 5.4 - 5.6) even Medicare is allowing a Visit every 4 Months. Dex 6 and Tandem CIQ is my Cure!
    • 16 hours, 46 minutes ago
      Judy Hampton likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      My A1C is normally in the 5 to 6 range also, but I am lucky to have an Endo who answers any questions I may have and discourse on new technologies. He also checks my feet and eyes. He spends up to 40 minutes with me. I have been T1D for 59 years and have been through a pregnancy (hellish) also. I still have many questions about this disease and it’s effects on the rest of my body as I am very active.
    • 17 hours, 8 minutes ago
      Patricia Dalrymple likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      I believe if you have good control and your A1C's prove it, maybe 10 to 20 minutes is enough. My A1C's are in the high 5's / low 6's so my session is usually complete within minutes tops, but there are probably other patients that should require a little more time from their endo to get them on a 'well managed' A1C path.
    • 17 hours, 10 minutes ago
      cynthia jaworski likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      I believe if you have good control and your A1C's prove it, maybe 10 to 20 minutes is enough. My A1C's are in the high 5's / low 6's so my session is usually complete within minutes tops, but there are probably other patients that should require a little more time from their endo to get them on a 'well managed' A1C path.
    • 17 hours, 17 minutes ago
      Anneyun likes your comment at
      If you are an adult with T1D, how much has type 1 diabetes affected your thought-process and decision to have/not have children?
      I was diagnosed at age 12 and I don’t remember anyone talking to me about having or not having children. I married at 23, had an unplanned pregnancy that began when I was 24. I was not seeing an endocrinologist at the time (in 1979), but my OB doctor sent me to one. Both of the doctors made comments to me about maybe ending the pregnancy, but my answer was a definite NO!!! It was a hard pregnancy without the better insulin and technology that is available today. I went into labor approximately 6 weeks before my estimated due date. Since a Caesarian had been planned, no one had explained anything to me about going through labor, so that took longer and was harder on me than it should have been. Anyway I delivered a 7 pound, 11 ounce boy. He had jaundice and a slight heart murmur at first , but that cleared up after a short stay in the hospital. My son is 42 now and bloodwork has indicated he will not become a T1D. Same with his 2 children. That was my only pregnancy. I am now 67.
    • 18 hours, 42 minutes ago
      Joan Fray likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      It was so long ago, I don't remember...
    • 1 day, 9 hours ago
      TS likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      InsulinPumpers.com does a great job of distributing supplies to those in need.
    • 1 day, 14 hours ago
      jo likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
    • 1 day, 14 hours ago
      jo likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      InsulinPumpers.com does a great job of distributing supplies to those in need.
    • 1 day, 14 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I tried to donate them to my healthcare system but was told they were not allowed to take them. I tried a couple of other places- same story so I now will have to put them in the garbage
    • 1 day, 14 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I'm still looking for someone to give them to.
    • 1 day, 14 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I would love to learn of places to give/donate supplies!
    • 1 day, 14 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      My other was gave them to the Endocrinologist office to give to people who needed them
    • 1 day, 15 hours ago
      Trina Blake likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
    • 1 day, 16 hours ago
      Amanda Barras likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
    • 1 day, 16 hours ago
      Richard Wiener likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I would love to learn of places to give/donate supplies!
    • 1 day, 17 hours ago
      Janis Senungetuk likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I gave insulin to a friend for her cat who used the same as I did.( she also checked with her vet).
    • 1 day, 17 hours ago
      pru barry likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I gave insulin to a friend for her cat who used the same as I did.( she also checked with her vet).
    • 1 day, 17 hours ago
      pru barry likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have given most to my doctor to give to someone in need. Some I gave to my chiropractor for his son.
    • 1 day, 18 hours ago
      Sue Martin likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      My unused diabetes supplies like meters, that I was given but don’t use, just sit in a drawer. I wish there was someplace to send them. Any ideas, folks?
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    If you have moved away from your T1D care provider, how challenging was it to find a new T1D care provider who was accepting new patients?

    Home > LC Polls > If you have moved away from your T1D care provider, how challenging was it to find a new T1D care provider who was accepting new patients?
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    If you live with autoimmune disease other than T1D, which were you diagnosed with first, T1D or your other autoimmune disease? Share in the comment what your other autoimmune disease is if you have one!

    Sarah Howard

    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 Marketing Manager at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    42 Comments

    1. Rob Smith

      Actually didn’t have to move, but there was an insurance snafu where I thought I had to find a new provider. It was a nightmare.

      1
      6 months ago Log in to Reply
    2. Linda Baer

      Living in a major city, I had to wait 12 months to get an appointment with a new endocrinologist.

      6 months ago Log in to Reply
      1. Ms Cris

        My 9 month wait was in a major city, too. She’s at a University Hospital system, and the best move I’ve ever made.

        6 months ago Log in to Reply
    3. Nikki McDonald

      I’ve moved twice and had to find new providers each move. It wasn’t hard finding a provider but there was a few months wait period for getting seen. In that time frame my old provider still provided prescriptions/ answered questions for me if needed.

      6 months ago Log in to Reply
    4. Gary Taylor

      I recently moved to an new region in the same state. There are 20,000 people in a 20 mile radius and three clinical systems. There are NO Endocrinologists and only one Nurse Practitioner specializing in endocrinology. The nurse is booked solid until January or February 2023.

      1
      6 months ago Log in to Reply
    5. GLORIA MILLER

      I’ve moved three times in the last twenty years. Each time it was difficult to find another endo. The first endo I contacted in the city I presently lived would not accept anyone on Medicare. The next endo would only accept a limited number of patients on Medicare. I wasn’t on Medicare at the time but I knew I would be on it in time so there was no need in going to those doctors and then be kicked out when I had Medicare.

      1
      6 months ago Log in to Reply
    6. Jim Cobbe

      I answered ‘never’ but I did a couple of times spend a whole year overseas. The first time was in the early 80s when care was much more basic anyway, and the only real issue was ensuring access to supplies, but even that was simple — I took a year’s worth with me. The second time, I stayed in touch with US-based providers and found a very good local GP who happily coordinated with them, and I made various arrangements to ensure adequate supplies (neither the particular insulins I was on then nor the meter strips were available where I was without real difficulty).

      6 months ago Log in to Reply
    7. Vivian Moon

      I answered a little challenging as I have only used my PCP and myself as my T1D provider all of my 50+ years of diagnosis. There was nothing else for years and the only 2 endocrinologists I have seen were worse than nothing.

      1
      6 months ago Log in to Reply
      1. sweet charlie

        Same for me with 70 years!!!

        6 months ago Log in to Reply
    8. Joan Benedetto

      We have not moved, but our son’s Endo has left the practice. So far, his needs are being met by the PA until we are assigned a new Endo.

      6 months ago Log in to Reply
    9. Meerkat

      My endocrinologist retired after I had been with her for over 25 years. Fortunately she referred me to someone in her clinic who is very good.

      1
      6 months ago Log in to Reply
    10. Kristine Warmecke

      I moved 6 hours Southwest from where I grew up. It was a city, compared to the rural area I was used to. Due to this, it did not even occur to me that I would have a hard time finding a new endocrinologist. Well, it was impossible to find one who knew what a CGM was or how to use an insulin pump. This was in 2016, the only endocrinologist that took the insurance the hospital I worked at provided, did not work with patients that pumped or used a CGM. The other aspect of that was for the insurance to cover the supplies, I had to see an endocrinologist. When I brought this to the insurances attention and ask them to find me an endocrinologist who would see me in network, they found it impossible, too, and told me I’d just have to go to back to shots.

      1
      6 months ago Log in to Reply
      1. sweet charlie

        OMG!!!

        1
        6 months ago Log in to Reply
    11. cynthia jaworski

      mine keep moving or retiring. Often, the medical advice is better than the referral advice.

      6 months ago Log in to Reply
    12. Lyn McQuaid

      Next year will mark the 30th anniversary of my diabetes diagnosis and I have had the same endocrineologist all 30 years. One of these days he will retire, though, so I will have to look for a new one. It’s my impression from him that practices are inundated with type two diabetics and that many endocrinologists wish they had more type one patients.

      6 months ago Log in to Reply
    13. Natalie Daley

      I live in a city, but I was referred to an endocrinologist 80 miles away when I first started to use insulin. The doctor I was seeing said, “He had no idea what to do with me.” At age 45, with three young kids, I was wondering if I was going to die. As I passed the front desk, the nurse handed me a piece of paper with a doctors name and phone number and said he could help. I drive that 160 mile round trip quarterly and have for over 30 years. That doctor is now the head of the hospital’s department and a professor of endochrinology. I hope he’s immortal. He should be.

      3
      6 months ago Log in to Reply
    14. Sue Martin

      I moved from a foreign country back to the USA. I was in a large metropolitan area. I was advised to go to the clinic associated with the large teaching hospital. I didn’t have any problem getting an Endrocrologist provider.

      1
      6 months ago Log in to Reply
    15. Stephen Woodward

      Had one in town near by, but when I asked the medical group to provide access to my pump data they refused and when I challenged that decision, noting that that was limiting care, I was thrown out of the office. Had to find a specialist 2 hours away to get the help I needed. The new one is great.

      6 months ago Log in to Reply
    16. Alyne Branson

      The challenging part is finding one as good as I had before.

      4
      6 months ago Log in to Reply
    17. Drina Nicole Jewell

      I moved and couldn’t find an Endo close by and called my old Endo crying and she said I could continue to see her via 2 virtual visits and one in person through a 12 month period. She then retired and told me her replacement was incredible and to be open to her. She is AMAZING and okay I have to drive 4 hours one way once a year but 💯 worth it.

      3
      6 months ago Log in to Reply
      1. Lawrence S.

        I drove five hours each way for about 15 years, and never thought about seeing someone closer to where I lived. It was worth every mile and minute. Best wishes to your. And long-live your current Endocrinologist.

        2
        6 months ago Log in to Reply
    18. Lawrence S.

      I answered “Challenging”, but probably should have said “Extremely Challenging”. Even though I live near a major city, there appears to be a limited number of Endocrinologists. I decided to go to a major hospital’s Endocrinology unit. It was tricky getting in there because there is a waiting list. But, at the time, I was not on Medicare and had private insurance. If I had had Medicare at the time, I would not have been able to get in to this hospital. I now am a Medicare recipient. Having said that, I have not seen an Endocrinologist for years. I am assigned to an ARNP (I’m not sure if that is the corrected initials). In ten years, I have been passed along to five different doctors or ARNP’s. I feel that I never have received the quality of care that I had before I moved, where I saw the same Endocinologist (doctor) for 15 or more years.

      1
      6 months ago Log in to Reply
      1. Wanacure

        Lawrence, I’m on Medicare. You deserve an endocrinologist too. Get an advocate.

        3
        6 months ago Log in to Reply
    19. Sherrie Johnson

      The biggest challenge was finding a doctor that is up to speed on pumps etc. I found a great one and I’ve been her patient for 12 years before that pretty hit and miss I was on my own a lot it blew me away that doctors didn’t know as much as I thought they should

      1
      6 months ago Log in to Reply
    20. lis be

      I said not challenging, but there are a lot of endos in NYC. The problem is finding a new one that is good, not overwhelmed and has a strong support staff!

      2
      6 months ago Log in to Reply
    21. Pauline M Reynolds

      When I moved from the east coast to the west coast, I joined an HMO and was referred to the endocrinology department within a short time.

      6 months ago Log in to Reply
    22. Melissa Childers

      While I found a provider fairly easily, the issue was finding an Endocrinologist who understood that I understood my body, and I was no “textbook” patient.

      3
      6 months ago Log in to Reply
    23. Wanacure

      Looking over my life there were times I had no medical. Most of time seen by General Practioner or a Primary Care Physician, medical personnel who were not endocrinologists. But now I have an endocrinologist (and access to other specialists as needed) as well as my longtime PCP. Fortunately my first endocrinologist after onset was one of the best. And within my first 3 years of onset I was in an expensive specialized diabetes clinic. So I learned from the best, which enabled me to cope with other periods of working without insurance and periods between jobs. In a couple of periods of no insurance, I knew people who could help me in case of emergency. And in this large city there were opportunities to volunteer for medical research; if the medical researchers had noticed something drastically wrong, they would have said something. A few times I’ve relied on the county Public Health Service and once on a free clinic for the indigent for dental surgery. I’m grateful for ALL the nurses, doctors, counselors, MSWs who’ve given such good care. I’m grateful for Medicare and social security and at times I act to prevent further privatization of our healthcare and welfare systems and public schools. I’ve lived east and far west of the Mississippi and in jail (war protester).

      3
      6 months ago Log in to Reply
    24. Becky Hertz

      I moved from the Silicone Valley to the Outer Sound Area in 1993. Back then it wasn’t difficult to find a good new provider.

      6 months ago Log in to Reply
    25. AnitaS

      I have never had to ever move, but I have had several doctors (endos and other specialists) move to other hospitals. Luckily there were enough endos and other specialists for me to choose from in the health system that my insurance covers.

      6 months ago Log in to Reply
    26. Jeff Balbirnie

      Finding any white coat on as an MD is easy, finding one who deeply understand the nuances, subtleties of the troubles, the mental aspect of diabetes is impossible

      3
      6 months ago Log in to Reply
    27. KarenM6

      My first major move as an adult, I had been diabetic for a coupla decades but had never heard of the specialty of endocrinology. So, I was cared for by a PCP. Like others have said, finding a doctor was not a problem, but finding a good one took some effort.
      Eventually, I found a doctor who I loved, but he died. There were 2 or 3 doctors who didn’t work for me.
      Then, I was newly married and discovered I was seizuring at night and there was a trip to an ER. The ER doc gave me the name of an endo… who I adored.
      After a decade or so, he retired.
      The next one turned into a beloved doctor.
      So, recently, my last endo has retired and I’ve had to break in a new guy. As of right now, I’m unsure if I’ll keep him. I need more data and more meetings because my first impressions are always hampered by my cPTSD.
      So, really, finding an endo (and I live in a major city) has not been terribly difficult. (I’ve not really mentioned all the doctors who have taken care of me… just the ones I loved…) it’s the ones who did not care for me well that caused challenges.
      I had one doctor (pre-CGM) ask me why I tested so often. I only went to him once. I could not see myself fighting for test strips on a regular basis.
      Anyway, there were challenges, but not as relates to finding a provider, but in finding the right provider for my needs and personality.

      2
      6 months ago Log in to Reply
    28. Janis Senungetuk

      In the mid 1970’s moved from San Francisco, CA to Fairbanks, AK. The issue was finding a physician who had a clue re. T1 D. During the 6 years I lived there I was hospitalized once because of a very severe low. The only thing my physician did was to order a lab to determine if I was producing any insulin. When the results confirmed that I didn’t actually produce any insulin, he advised me to move back to the lower 48 to get my medical care. We did move, but that wasn’t the reason.

      1
      6 months ago Log in to Reply
    29. Ahh Life

      Easy peezey in the Antelope Valley, CA where we moved to work for a year in 1996 from central Florida. It was a British fellow who was a great endocrinologist. Metro area was about 250,000 at the time. Wonder if he’s still there? ͡⚈ ︵ ͡⚈

      6 months ago Log in to Reply
    30. Anthony Harder

      When I moved, I asked my endocrinologist for a referral near my destination. He gladly provided that. After I moved back, he referred me to a new endocrinologist in his clinic since he had retired.

      6 months ago Log in to Reply
    31. Patricia Dalrymple

      Agree with others. I had a hard time getting one to accept me in 2001 when I was first diagnosed and my primary thought he could handle a T2. Unfortunately, I was T1 and discovered on my own I needed insulin, not pills. I moved to St Pete, FL in 2015. My Baltimore Endo who was very progressive said basically I needed to go to a university hospital to get the best Endo, in Tampa. Too far for me working 50 hours a week. So I have an adequate Endo who is a lousy communicator. But, I care for myself. Doctors pretty much leave me alone because they are I know my body and understand the disease and what it takes to manage it. When I retire and have more free time, I might change.

      1
      6 months ago Log in to Reply
    32. Molly Jones

      I chose unsure as I did not MOVE but decided to find a better endo. It was not challenging 11 years ago in the rapidly expanding US city I live in.
      I asked for a referral from my neurologist whom I already saw at a nearby University Hospital and had an appointment within two months.
      (After I also moved my GP and all future specialists to the same location my health concerns started to become more understood.)

      6 months ago Log in to Reply
    33. Steven Gill

      Over 24 years I’ve seen 6 endocrinologists, 3 general practitioners since my diagnosis (mainly from job changes/insurance changes). Only one time was I actually impressed with a specialist. My first “diabetic care” doctor was a GP, said we could learn together (he had to die on me), I really think was the most efficient. The one endocrinologist I felt good about was at medical trials for TYPE 2 out of control. The endo~ I fired previously kept saying I was too old to be a TYPE 1.

      When I moved talk to neighbors, found a general practitioner, initially he said he had limited experience with TYPE 1, knew nothing of pumping so would refer me to a neighboring hospital for diabetic care, until he saw my a1C.

      I’ve learned more from literature, periodicals, and podcasts than from any physician. Saw a trainer once, I know how to measure food and read labels. Went to a support group once, I’ll not sit and watch people whimper how much diabetes sucks, there’s a lot worse (had two sisters die of cancer).

      But there’s a flock of doctors around I can pick and choose, hire or fire (last a1C was 6.3, looking at 5’s next time…)

      1
      6 months ago Log in to Reply
    34. sweet charlie

      I feel so sory for many of the replys to this!! For me I started 70 years ago and just saw the Doc that you saw for a sore throut etc.. Then when I moved cross country, I saw an Endo as sugested by the local hospital about the time of the A1C testing started. We had no CGM or finger sticking.. just pee on a color strip. He insisted that I keep increasing my insulin dose until my A1C be “normal”… I was in a continuos LOW… I dropped him and just saw a local GP who left my T1D care up to me.. I am not having any of the problems that I read on this site…. ????…. Just lucky and OLD !!!

      6 months ago Log in to Reply
    35. Ms Cris

      I had to change healthcare providers because we changed our insurance provider, which is just as difficult as moving elsewhere.

      Once I found an Endo I thought would be a good fit, I had to wait 9 months for an opening! But I don’t regret it, she’s fantastic and the resources within that network are priceless.

      6 months ago Log in to Reply
    36. Randell Cole

      No other

      6 months ago Log in to Reply
    37. kathy Granzow

      I had two move away to other places in the country, and I currently have to travel twice as far to get to my current one, who had to absorb all the patients at the other location as they couldn’t find a replacement, and I wind up seeing the PA every other visit, because they don’t have enough doctors to see all the patients and I live in a major metro area!

      5 months ago Log in to Reply

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