The never ending battle that is always lost - T1 blood sugar control

[Athena]

Just wondering whether there are other diabetics, in particular Type 1s who have battled and still battle with the BG control dragon. If it's not too high, then my BGs always tend to go too low. There is never stability and peace. My A1c are now at the 9 level and I really feel like I'm in crisis mode. My BG instability really started about 2 years ago (I believe due to perimenopausal hormonal fluctuations) but my endocrinologist has not been able to do much to help me (except suggest an insulin pump, which I really don't want as I would be wearing a gadget 24/7).

The issue for me is overcoming my anxiety to allow myself to possibly go too low, in order to have better BG levels at all times. That is the issue. I hate hypos with a vengeance.

Does this sound familiar to anyone else?

[Rerun]

I'm not diabetic... yet... but have you looked into the "pump" (?) where they insert a thing that automatically gives insulin when needed?

I'm not sure I know what I'm talking about...

                       

[Hootie]

our experience is that the dialysis takes some insulin out during treatment causing BS to go up some. My wife does not eat before treatment only after to get the protein, etc. Her insulin pump (Medtronics Mini Med) has been a "god send" in managing her BS. Last labs show A1C at 6.3 but it was 5.7 before dialysis started. She and the endocrinologist have been making minor modifications to get it back to where it was. It is a challenge for Type 1 diabetics. You are not alone in this dilemma.

Hopefully that helps give you a couple thoughts.

Joe

[Athena]

Rerun,
Yes you are correct about the insulin pump - it is a gadget that is hooked up to you (usually in the abdomen) and is clipped usually on the waistband of pants or skirts. It's like wearing a mobile phone all the time. Without an insulin pump, one just takes insulin injections via syringes or insulin pens. I much prefer the latter instead of an insulin pump because it is more natural to be not be tethered to a gadget all the time.

Hootie, Thanks for your reply. The better control is why there is pressure is on me to obtain an insulin pump! I'm trying to manage by shots however hormonal fluctuations due to menopause is what makes control sometimes hard these days. Having an A1c of 5.7 is pretty low for a T1. When I had an A1c of 6.3, I kept having a lot of hypos. How does your wife manage where lows are concerned?

[Hootie]

The pump gives her a warning signal for a predicted low. She can then manage before the lows cause any issues. It does the same for highs. She and the doctor set the parameters for both the high and low warnings. Everyone is a little different with their body types and response to the insulin.

My wife fought the pump for several years, even after several friends wearing it told it was wonderful and the best decision they ever made. She is on her second pump as the technology keeps getting better and better. She fought the pump for the same reason you are saying on the "wearing something hooked up to me". She does not regret her decision at all. In fact she is now a major proponent of the Mini Med pump. Obviously, we cannot say what is best for you, but my wife and I love the technology. I would look into it. 

[PrimeTimer]

My husband checks his blood sugar level several times a day. If it gets too low, his BP goes up. In that case, he pops several glucose tablets to bring his blood sugar back up. He prefers the tablets because the glucose in the tabs is a precise measurement, no guessing. Otherwise, he has to dig into my stash of cookies.

[Athena]

I've just got my latest HbA1c and it's a disaster, as I expected - 9.1 %!!! 
I have to get it back to 7 or less. I just don't know how to do that without living in absolute fear of hypoglycemic attacks. I have no choice but to once again live tightly controlled & always on edge again. I sure hate having to live the life of fear and anxiety but that is the way it is with Type 1 diabetes 

[PrimeTimer]

My husband struggles with his HBA1c too. It's not too bad tho, usually between 6 and 6.5. He says the best way to keep it low, is a low-carb diet but added that staying on such a diet is very hard to do. He looked very skinny (almost too skinny) back then. He did it for 2-3 years and then said forget it. He also said "no" to using an insulin pump. He did not want to take the chance of infections or having it malfunction (he knew someone with a pump that kept breaking down). Fortunately, he's not afraid to stick himself.

[Athena]

My husband struggles with his HBA1c too. It's not too bad tho, usually between 6 and 6.5. He says the best way to keep it low, is a low-carb diet but added that staying on such a diet is very hard to do. He looked very skinny (almost too skinny) back then. He did it for 2-3 years and then said forget it. He also said "no" to using an insulin pump. He did not want to take the chance of infections or having it malfunction (he knew someone with a pump that kept breaking down). Fortunately, he's not afraid to stick himself.

Thanks PrimeTimer for your reply. I also don't like the idea of an insulin pump at all, also due to malfunction risks and just being tied to a medical device all the time horrifies me. I have no phobia of needles whatsoever and do not mind doing regular finger prick testing. BUT, it's just so hard. Low carb eating is very good, but it does mean eating much more fat and protein ... And I need my nice healthy carbs. Looks like I'll have to try an insulin pump afterall ...

[UkrainianTracksuit]

Hi Athena,

I totally understand the struggle with HbA1C's.  There are so many factors that influence our levels it can be like running around in circles.  The longer you have T1, the more difficult it becomes to control.  As well, when you enter into periods of stress or hormone fluctuations, this can send your blood sugars all over the map.  If you are encountering perimenopausal hormone fluctuations, that would send your levels up, down and around.

I don't have a pump and I will not get one.  Perhaps in the future my mind will change, but for now, I am comfortable managing myself with injections.

I don't know your schedule during the day but you must make sure to eat/take your insulin at the same time each day.  As well, the same amount of carbs per meal.  I noticed that made a big difference in my control after a patch when my life was a little too hectic.  Do you have access to a diabetes educator?  They can help you chart your food intake and which amount of insulin you give to identify the patterns in your blood sugar.  Such as, if you are having lows at a specific time, they can help you make changes to your diet or dosages.  Sometimes it takes another set of eyes to identify the things we can miss as we deal with the big picture ourselves.

Best of luck.

[Athena]

Hi UkrainianTS
The biggest problem I have is around the timing of my bolus insulin dosages for meals. I usually can't bolus at the same time as when I eat because the insulin is too fast and I go low about half hour to 1 hour after eating!! So what I have to resort to doing is waiting for the rise in BS level to bolus then - but that often doesn't work quite smoothly because I often go high and then have to battle for a few hours to safely bring it down. But I do avoid unexpected lows this way.

I have been tested for gastroparesis & it was negative. I have no digestive issues otherwise. I don't know why it takes so long for my BS to rise after a meal sometimes. It makes the exact timing of insulin dosages a massive challenge. Eating and dosing is usually a delicate anxiety-filled operation for me.

I truly dislike the thought of using an insulin pump with a passion!

[UkrainianTracksuit]

The problem you described is one that is prime for diabetes educators to help you.  They understand that insulin acts at different speeds for everyone.  At one point, I was instructed to give my insulin 15 minutes after a meal (after carbohydrates of the meal itself were carefully planned) because the smallest dose of fast-acting insulin would cause a low.  Doctors or endocrinologists can't really help you in this area as they do not have the time to go through your food charts or patterns in blood sugar.  Diabetes educators deal with issues like yours everyday and in my experience (systems in two different countries) when my HbA1C started to spike, the doctor made arrangement for me to see diabetes specialists: the educators. 

If their first approach doesn't work, they will be there to offer other ways to help.  As well, they are more in the know about the various complications some diabetics have with insulin dosages such as metabolic differences.  The reasons you are encountering lows and your insulin seeming so potent could be due to something you haven't thought about or realized. 

However, a strict schedule will greatly help your HbA1C.  Once you understand the best time of your days for meals/time of your shots as well as similar sized meals, (with the above problem rectified), if you stick with it, there will be changes.  Look at this way: people with the most uncontrollable blood sugars have their best numbers when they are admitted to hospital.  Why is that?  The same amount of food comes at the same time each day as well as the required dosage of fast-acting insulin. 

I know how frightening lows can be.  Trust me, after 3 trips by ambulance where I teetered on diabetic coma (when I was a party person) and passing out twice on the football field (soccer), I've learned a lot about lows in my life.  As well, I know that overtreating them sends blood sugar levels all over the place.  Granted, as a kid, much of the diabetes educator stuff was forced upon me but now, I understand their advice really helps.  After a lifetime of Type 1, my numbers are great.  It took a lot of facepalms and banging my head, but it took outside eyes to help. 

[Charlie B53]

WOW, have I got a lot to learn yet.  3 years as a T2, otherwise just another Guy so I tens to make very wide, and sometimes wrong, assumptions.  Like thinking T1's have a much better handle on this than I what with a near lifetime experience dealing with their sugars.

I had a tough time learning how much insulin my body needed.  Turned out I was somewhat insulin resistant.  My sugars wouldn't come down and I started doing some experimenting.  Taking my sugar injecting a measured dose then 2 hours later testing again.  Writing down EVERY test and shot so I could look for a pattern, calculating just how much sugar was affected by how much insulin.  It wasn't much.  Close to 5 sugar per insulin unit.  Once I had that number I was also comparing my night and morning sugars, slowly increasing my Lantus until both numbers started getting close to the same.  To this day I still write down every test, I just don't write down my shots any longer.   

Finding out how your bodoy reacts to the insulin, knowing better how much to use, and how long of slow it acts can help you make better choices in when and how much insulin to use.

I may be repeating the obvious, if so, I'm sorry.