This is long, So sorry but I need to get any advice from folks who may have experienced similar issues. I manage my husbands T1 diabetes since he had a brain bleed in 2013.
Ronnie had a wonderful endocrinologist from 2008 till 2021. He was t1 diabetic wearing an Tandemx2 insulin pump and he understood diabetes. Sadely he died in April of 2021. He had diagnosed Ronnie T1 diabetic in 2008. You see, the records from his one man family run office were lost to us. (long story but I did try every avenue to get them).
We practiced tight control and he never questioned our methods of control as long as Ronnie's A1c was in the 5.2-5.6 range which it was for several years. If I did something that I needed his approval of, I could talk to him (deltoid injection of insulin due to a long running elevated BG) He always approved and told me he wished all his patients were interested in learning how to take care of their diabetes.
Next we had to go to the endocrinologist recommended by our PCP. That endo is part of a 5 physician practice. Over the next year we felt abused by this doctor who wanted me to allow Ronnie to have higher BG levels and Lower limits above 85. On our first visit to her, she marched in the exam room and held up the Clarity graph of the last 90 days of his blood glucose readings and proclaimed that Ronnie could not possibly be T1 diabetic and maintain that sort of bg control. The line was in the middle of the range with few peaks or valleys. She stated that she "would not" have the tests performed to confirm that diagnosis. She did not have the records to look back on. (Many of the patients coming from our former endo could not get their records) . Things rocked on and every visit was an ordeal with me trying to keep my mouth shut and stay out trouble. Tho Ronnies blood glucose remained in good control, she wanted to adjust the setting on his insulin pump allowing a wider range of readings claiming that it would relieve me of much overseeing of my husbands readings. She yelled at me during one visit stating that she would only see us once a year to keep his prescriptions up. Her reason was that she was not controlling Ronnie's blood glucose but that I was. Her concern was not that it wasnt managed well. Ronnie is a brittle T1. The pump settings must be changed with the change in seasons and the change in activity levels and for many reasons. She didnt seem to understand that he has dawn phenomona and foot on the floorrise in bg and many other reasons for BG swings. I must manage the pump settings to keep it in control. It cant be let go for months at a time. Well, after that visit I confirmed with our insurance that we had to see the endocrinologist at least every 3-4 months for his diabetic supplies to be covered.
Then Ronnie had a spontaneous fracture of his pelvis. During the recovery and bed confinement, the time for his next endo visit was phone conference with that endocrinologist. She stated that he must have had a fall due to low BG. I told her that he did not have a fall. He did not have a low BG. His bg was in the 90"s all night long the night before he woke and was not able to stand and bear weight on his right leg. I told her that he did not leave the bed all night explaining that I get up with him every time he gets up. (he has a brain injury from a bleed in 2013). I monitor his blood sugar all night also. (By the way, I am a recently retired 48 year veteran of xray technology. Unexplained spontaneous fractures do occur) Well, we got a letter from her office a few weeks later stating that she would no longer see Ronnie as his endocrinologist. Well we found out that we cant see any of the doctors in that 5 physician practice if one will not see us.
Our PCP referred us to the only other endocrinologist in our area and he does not deal with patients who use the Tandem X2 insulin pump. Ronnies pump is out of warrenty in July but we must see someone sooner. I am stretching his supplies as far as I can and hope to make it till May when we will see an endo in a town 75+ miles away. I dread going to someone else knowing that the trend is to allow older adults to have a less managed blood glucose.
Our PCP loves the control we have over his diabetes. I hope to talk to her soon and ask her if we can just use her to manage his diabetes. She is a low carb eater like us.
I will post another new post asking about insulin resistance in long term diabetics. Our control is wavering.
I would like anyone elses explanations on how to deal with endocrinologists who have no bedside manner and quote olde out dated studies that have long since been debunked. She stated that there is no advantage to a low a1c. Also stated that there is no reason to bring down a elevated BG quickly.
Thanks for reading this. If anyone has any suggestions about protecting my husband from the phillosophy that good diabetes control is not important for seniors.
Ronnie had a wonderful endocrinologist from 2008 till 2021. He was t1 diabetic wearing an Tandemx2 insulin pump and he understood diabetes. Sadely he died in April of 2021. He had diagnosed Ronnie T1 diabetic in 2008. You see, the records from his one man family run office were lost to us. (long story but I did try every avenue to get them).
We practiced tight control and he never questioned our methods of control as long as Ronnie's A1c was in the 5.2-5.6 range which it was for several years. If I did something that I needed his approval of, I could talk to him (deltoid injection of insulin due to a long running elevated BG) He always approved and told me he wished all his patients were interested in learning how to take care of their diabetes.
Next we had to go to the endocrinologist recommended by our PCP. That endo is part of a 5 physician practice. Over the next year we felt abused by this doctor who wanted me to allow Ronnie to have higher BG levels and Lower limits above 85. On our first visit to her, she marched in the exam room and held up the Clarity graph of the last 90 days of his blood glucose readings and proclaimed that Ronnie could not possibly be T1 diabetic and maintain that sort of bg control. The line was in the middle of the range with few peaks or valleys. She stated that she "would not" have the tests performed to confirm that diagnosis. She did not have the records to look back on. (Many of the patients coming from our former endo could not get their records) . Things rocked on and every visit was an ordeal with me trying to keep my mouth shut and stay out trouble. Tho Ronnies blood glucose remained in good control, she wanted to adjust the setting on his insulin pump allowing a wider range of readings claiming that it would relieve me of much overseeing of my husbands readings. She yelled at me during one visit stating that she would only see us once a year to keep his prescriptions up. Her reason was that she was not controlling Ronnie's blood glucose but that I was. Her concern was not that it wasnt managed well. Ronnie is a brittle T1. The pump settings must be changed with the change in seasons and the change in activity levels and for many reasons. She didnt seem to understand that he has dawn phenomona and foot on the floorrise in bg and many other reasons for BG swings. I must manage the pump settings to keep it in control. It cant be let go for months at a time. Well, after that visit I confirmed with our insurance that we had to see the endocrinologist at least every 3-4 months for his diabetic supplies to be covered.
Then Ronnie had a spontaneous fracture of his pelvis. During the recovery and bed confinement, the time for his next endo visit was phone conference with that endocrinologist. She stated that he must have had a fall due to low BG. I told her that he did not have a fall. He did not have a low BG. His bg was in the 90"s all night long the night before he woke and was not able to stand and bear weight on his right leg. I told her that he did not leave the bed all night explaining that I get up with him every time he gets up. (he has a brain injury from a bleed in 2013). I monitor his blood sugar all night also. (By the way, I am a recently retired 48 year veteran of xray technology. Unexplained spontaneous fractures do occur) Well, we got a letter from her office a few weeks later stating that she would no longer see Ronnie as his endocrinologist. Well we found out that we cant see any of the doctors in that 5 physician practice if one will not see us.
Our PCP referred us to the only other endocrinologist in our area and he does not deal with patients who use the Tandem X2 insulin pump. Ronnies pump is out of warrenty in July but we must see someone sooner. I am stretching his supplies as far as I can and hope to make it till May when we will see an endo in a town 75+ miles away. I dread going to someone else knowing that the trend is to allow older adults to have a less managed blood glucose.
Our PCP loves the control we have over his diabetes. I hope to talk to her soon and ask her if we can just use her to manage his diabetes. She is a low carb eater like us.
I will post another new post asking about insulin resistance in long term diabetics. Our control is wavering.
I would like anyone elses explanations on how to deal with endocrinologists who have no bedside manner and quote olde out dated studies that have long since been debunked. She stated that there is no advantage to a low a1c. Also stated that there is no reason to bring down a elevated BG quickly.
Thanks for reading this. If anyone has any suggestions about protecting my husband from the phillosophy that good diabetes control is not important for seniors.
