What is the most challenging part of your diabetes management?


#1

What is the most challenging part of your diabetes management?

  • Dealing with the insurance company
  • Finding a healthcare team that understands me, and works with me
  • Making the best choices for my health

0 voters


#2

sticking to a good diet, hands down. all else pales by comparison.


#3

For me it is dealing with hypoglycemia. As Dr. Elliot Joslin said long ago, “High blood sugar will kill a diabetic, but frequent hypoglycemia will ruin him.” It is useful to think of diabetes management as itself an iatrogenic disease, since if all the patient had was a need constantly to calculate food intake, exercise, and insulin dosing, as well as suffering unanticipatable and unpreventable episodes of hypoglycemia, these effects alone would constitute an extremely serious chronic illness.

In the days before the invention of home glucometers, diabetes management was extremely simple and non-threatening, since patients only had the vaguest idea what their blood sugars were, so strict control could not be insisted upon, with the result that hypoglycemic episodes were extremely rare, because patients were not cultivating normal blood sugar levels, which are only a hairsbreadth away from hypoglycemia. Thanks to the absence of home glucometers, I was able to study in five different countries, live in seven different countries, and commute from Germany to England every week for my work. Now I could never hope to live like that, since the threat of hypoglycemic episodes requiring someone else’s hope is too great to allow me to live alone if I have to in pursuit of my career goals.


#4

It is your decision to regulate your diabetes as you are. While you now have additional tools to manage your diabetes, it is your decision if you want to use those to reduce your levels to the point of a high risk of hypoglycemic episodes on a daily basis that could interfere with your ability to pursue your career goals/travel/live alone/etc.

I travel frequently and pursue the career goals I wish. I would say my only limitation is risk of losing insurance. I live alone. I have not needed assistance for a low bg since switching from the pump over 2 years ago. I do use a cgm though, and I think that is a huge help. There are many ways of reducing the likelihood of hypoglycemia though. If that is a major concern, then running a slightly higher average bg may be the better choice.

I do not think this is useful at all. Rather, it is discouraging and disempowering. I don’t understand why anyone would prefer to feel disempowered. In addition, I make every effort to determine what may have caused lows then take action in the future to avoid those instances. I rarely have instances where lows are completely unanticipated or completely unpreventable. It can happen, but it’s not at all a frequent occurrence. Baked into diabetes management are many choices. These choices result in higher or lower risk of hypoglycemia. If this is a major challenge, then you should evaluate your choices and make changes.

Good diabetes management both reduces A1c and limits hypoglycemia. If the A1c has been reduced to the point where frequent hypoglycemic episodes are experienced, then it has been reduced too far.


#5

It’s always insurance issues. My medical team is always open to discussion about treatment plan changes. The problem is always getting insurance to cover something that is not an approved treatment plan. Constant battles and it never seems to go away.


#6

Diabetes sounded AMAZING prior to 1980 according to this guy. I really don’t know how I’ve lived alone, travelled alone and practice law every day with all these doctors constantly trying to keep my blood sugar below 4 all the time. I don’t know why these family members of mine keep lying to me about how horrible and unpredictable hypoglycemia was in the old days when it didn’t exist. This really is a conspiracy for the ages right up there with JFK let me tell you…


#7

deleted


#8

“Making the best choices…” is probably the best way to sum it up. The Insurance option being a close 2nd. The other option no longer applies.

As for diabetes being better in the 80’s… I think I’m close to empathizing with Seydlitz. I’m sure it may sound completely backwards to many. I can’t fully explain it, but the first 20 years of diabetes were an absolute breeze.


#9

deleted


#10

For a little context, Seydlitz keeps his A1c under 5 and then complains often of hypoglycemia. It’s very confusing.


#11

deleted


#12

Well, mine is 5.5, but I’m not complaining often of hypoglycemia.

It’s just the combo that’s confusing.


#13

I suppose mine would be “making the best choices for my health.” But part of that is subjective. I can do everything possible that’s best for my health and the result being my life revolves around my health. I don’t think that’s necessarily the best choice. So it’s more about finding a balance that works for you between doing everything that’s best for your health and living and enjoying life even if some of your choices aren’t the best (but are still responsible).

The other part of diabetes that’s the hardest for me is its constant changing nature. I just get so exhausted sometimes always having to troubleshoot and trying to figure out how much insulin my body needs at any given moment. I am so envious of those lucky people who are able to settle on a stable insulin dose for months or years at a time.


#14

Many of your episodes are preventable if your A1c weren’t in the 4% range.

I wasn’t diagnosed in the '80s, but in my experience diabetes in the 1990s before our modern technology was extremely threatening compared to today. I have not had a severe low requiring medical assistance since 1998. (That’s not to say I haven’t had scary lows, but lows on R and NPH were far more severe than anything I’ve experienced since.)

I’m really sorry to hear that. At the same time, I seriously wonder how your outlook might change if you raised your A1c by a percentage point or two.

My last A1c was 6.2% and I travel regularly for work, am pursuing my dream career, and live alone. I haven’t experienced any diabetes-related emergencies since getting off the older insulin regimens. I use a combination of pump and CGM and the level of control I have would not be possible without these tools.


#15

Almost any level I keep my A1c values at will produce catastrophic and unanticipatable hypoglycemic episodes, since my disease just varies spontaneously and produces massive and sudden swings in blood sugar values all the time. I eat exactly the same food in exactly the same amount at exactly the same time every single day for my entire life, and in addition I have exactly the same activity each and every day, and yet despite that, the same dose of insulin taken at exactly the same time with exactly the same activity and the same food at the same time on Monday can yield a blood sugar value of 220 at 6 PM and then on Tuesday at 6 PM the value will be 670 and on Wednesday it will be 30.

With the introduction of home glucometers in the 1980s I found that I had been maintaining an A1c of around 10 on average, and my endocrinologist said that the average he had been finding was about 12. Of course, all these values fell once we all got home glucometers, but at an A1c of 10 to 12 we all enjoyed such a broad cushion against sudden drops in blood sugar that hypoglycemia was nothing like the threat it became after that. The statistics are clear that hypoglycemic incidents tripled after that period, and if you talk to any emergency medicine personnel, they will confirm that they are dealing with more hypoglycemia than ever before.


#16

Even if you do exactly the same thing every day of your life, your diabetes will vary. That’s just the nature of Type 1 diabetes. Even if you control all the factors that you can possibly control, there are dozens of factors that are entirely out of your control that affect blood sugar.

So, given that, what have you tried to do? If doing the same thing every day isn’t working, have you tried anything else?

Does the number of lows you have decrease with a higher A1c? Have you tried using a CGM? Have you tried using a pump? Have you tried identifying high-risk times so you can take measures to prevent lows? Have you tried dynamic control techniques such as those outlined in Sugar Surfing? Have you tried a low-carb diet? Have you tried to see if you have something like gastroparesis and whether medication might help?


#17

None of the above, yet all of the above at different times, and many others.

The biggest challenge is to find balance in just about every daily task. Checking BG, IOB, FOB, etc, when a friend calls spur of the moment to make plans for NOW.
Having plans, but getting them changed or delayed at the last minute. Always being prepared with food and insulin, just in case plans change.

So maybe option 3 is the best fit for me, if it said adapting to choices to get best outcome for my health. Sometimes I ask others to adapt, or we compromise.

After 50+ years, I don’t need much help from health care team except getting the tests and supplies I need. Insurance/high costs is a concern in general, and seems unfair.


#18

Dave44, I’m 66 & over the last 20+ yrs, I don’t recall my A1c ever being below a 7.8… Seeing all these considerably “lower” #'s than mine is ‘unsettling’ for me!?! Whenever “I” try to get my #'s below 7.8, I get WAY into the ‘Hypo-dangerzone’… I know I have LOT’s of factors that effect my A1c; @ multiple orthopedic surgeries, stroke, & most recently, cancer; but is there a ‘good/acceptable’ A1c # that I ‘might’ aim for to try to ‘mitigate’ some of the evential ‘diabetes-side effects’? My Endo,(who just retired) was always amazed @ how few ‘side effects’ from T1 that I actually have. The ‘eye’ doc can’t believe I have T1, etc. Guess the ‘hardest’ part for me is just finding the ‘balance’ between OCD & ‘conservatively’ enjoying life!!


#19

I think this is a matter of how much you are willing to do and take to get to those low A1C numbers in addition to how much your diabetes will cooperate with your goals. For the past year I’ve had An A1C below 7 for the first time in my life but it still isn’t where I want to be despite a low carb diet, CGM and some of the newest insulins like Tresiba and Afrezza. However, I have very few lows and those I do have are mild and I can always treat them myself.

For those of us who experience or used to experience severe lows on a regular basis it is avoiding them that usually becomes the main part of our diabetes care to the detriment of our overall health. Surprising even though my A1C has significantly dropped my lows like I said are easy and non-threatening.

What kind of regimen are you on? Diet, exercise, insulins, pump?


#20

deleted