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Discussion Starter · #1 ·
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.
 

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Discussion Starter · #2 ·
I need to add to the above post that my husbands grandfather and mother were both insulin dependent diabetics. His mother was siagnosed as T2. Also I estimated years ago that 50% of the people at his maternal side family reunions were in various stages of diabetes and diabetic complications. Ronnies cousin was diagnosed T1 at 10 years old. I suspect LADA or MODY but I don't think anyone ever tested for either. The first diagnosis Ronnie had was t2 but when he went to the first endocrinologist he changed the diagnosis to t1.
 

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I think you're facing a situation several of us have faced, though perhaps with fewer options. I hope others will post here on their techniques for getting the care they need.

I think the idea of getting your PCP to manage everything (Rxs, etc.) is a good one -- maybe your very best option. Ronnie has an evolving and specific set of medical needs that (at least in the time Ronnie has spent with his PCP) have been well addressed.

It is an issue in medicine as it is practiced in the US that many doctors are specialists and either lack awareness or care about the bigger picture of everything affecting a patient. They address their body part or system and if that's within the limits, it's all systems go as far as they're concerned.

A PCP is more of a generalist and can be your ally in managing various aspects of care. They also can serve as the interface between patients and specialists and between patients and the almighty Treatment Protocol. My PCP isn't even a doctor (she's a PA) and I had to educate her some on how to manage BG without medication or insulin. My documented and long-term success is what has put her firmly in my corner. But you've got that -- or at least as much as you can get of that without the former endo's records (and I would think/hope the endo released their records to Ronnie's PCP). Documenting your daily treatment protocol and correlating it with Ronnie's test results and overall health probably will be what gets you the ally you need.
 

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I don't know that I agree with it either. BUT:

There is recently information that low blood sugars are the most damaging to the overall health of a patient. Further that patients whose A1C is is more like 7 and a bit above have better health and lifestyles.

I do not say this because I think I understand, but because I hope some folks here can be closer to the latest info presented at the latest National Diabetes Conference.

I would be sure when she said a hip fracture due to low blood sugar, she meant a low type blood sugars, (which used to be recommended numbers) over months, not the night before, But I was not at conversation. And that is frustrating injury.

Doctors refusal to allow tests for MODY or LADA. I really do not know. I suspect that is an insurance thing, not just a simple doctors decision. Perhaps the doc made the decision not to do tests, because they felt they would be seeing something in the other data from the patient. or a lot of things are going just fine, tweak a bit.

I think some docs are uncomfortable with treating MODY or LADA.


I have some similar feelings about docs not doing tests I think they should. I bet if you ponied up money to pay for tests they would. If you do research, and find something in the patients data to indicate MODY or LADA then the doc might be more open to do tests. Doc may be thinking that something to points up one of those two might be more apparent.

But I know it is true, right or wrong, some experts feel higher average blood glucose is better. Lows are dangerous, and the definition of what is low is a rising number.

Try to make sure he gets some good oils, (Olive, Canola. was it coconut oil) blood sugars may be less dramatic in rising and falling,

Which is another point. This forum used to be full of people who talked about adding coconut oil to coffee in morning. What happened with that?
 

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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.
What can the Endo do that your PCP can't. If you have to have one and you don't want to find a new one that will work with you, do like I do, just nod your head and smile and keep on doing what you are doing and know is working. I'd probably ask what the disadvantage is to maintaining a normal A1c but wouldn't argue about it, just nod and smile. There is no danger of maintaining normal blood sugar levels. There is a danger of hypo levels, but you are well aware of that, know the procedures, and are prepared to treat.
 

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... This forum used to be full of people who talked about adding coconut oil to coffee in morning. What happened with that?
I can't speak for anyone else, but I still put a heaping tablespoon of coconut oil, a tablespoon of MCT oil, and 1-2 tablespoons of butter in my coffee every morning and if I don't eat lunch, I may have another cup of coffee just like it at lunch time. Not to get off topic from the OPs post, this could be a good topic to continue on a new thread, if you'd care to start one.
 
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