Confused

I am disappointed and confused. 70 yrs old and was dx with type 1 at age 8 in 1959.

I have done relatively well with complications, although I have had plenty of problems with my hands, but not in the last 10 or so years.

I tested my urine for 22 yrs. I was almost in a coma when dx, but was only in the hospital for 3 days. I don’t remember getting any training on how to take care of myself except for being given an orange on which I was supposed to practice giving injections. My
parents were given very little instruction either. Our doctor, whom I saw until I was 19 did not believe in strict control, because he believed that too tight of control was too hard for children. I took one shot, and always ate on time.

Then I was 30 my eyes started flashing and I was dx with the beginnings of retinopathy. My first A1c was 10. I bought a huge glucose monitor and quickly brought my A1c down to under 7. My eyes cleared up and stayed completely clear until last week.

About 16 yrs ago I started following Dr Bernstein, and kept my A1c extremely low by eating 30 carbs a day. I did this for 11 yrs. After 50 yrs with diabetes I suddenly needed two heart stents. Why, I don’t know. My LDL was very high on the Bernstein woe, but because my triglycerides were about 36 and my HDL was almost 100 I thought I was safe from heart disease. My A1c was 4.6 at the time I received stents.

Eventually I started following the Mastering Diabetes way of eating and changed to a plant based low fat diet. My particular body likes this way of eating better, although the Bernstein diet works well for many.

I have never had diabetic neuropathy or gastroparesis.

Last week I suddenly had blood in my eye and now have retinopathy. I had laser work yesterday and tomorrow I will have ablation on that eye. Right now, I just try to see through the blood.

I never, ever thought I would have another serious diabetic complication. I have had one A1c of 5.8 in the last 17 yrs. The rest have been 4.6 to 5.4. For 30yrs before that my A1c’s were usually around 6.5.

I don’t really understand why I now have retinopathy. I REALLY don’t understand why some other type 1’s who don’t work nearly as hard as I do at keeping excellent control are complication free even after 50+ years of type 1 diabetes. They have much higher A1c’s. My TIR is also very good.

I know that many,many diabetics never make it to the age of 70. I am very fortunate, I realize that. I know type 1 diabetics who died at much younger ages.

Mostly I am just frustrated, so I am venting. I wondering if my kidneys will go
next.

I had more laser treatments on my eye yesterday, so that my aneurism could be cauterized. My eye did not feel good yesterday, but is fine today. Hopefully the blood will clear up in a month or so, and my vision will return to normal.

I know that I will be ok. I will learn to live with this new situation, I am just shocked that it happened.

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@Richard157, can you shed some light on this? I remember a post of yours about the Joslin Diabetes Center where they try to figure out why blood sugar control is only a good complication predictor for groups, not individuals. Have they made any progress?

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Marilyn, I get your frustration. Some of us have taken to heart the academic and clinician information about our need to keep our blood glucose in a safer, closer-to-normal range.

I also took that information seriously, at least for many but not all of the years I’ve lived with T1D. This is good practice overall, but does not gaurantee us anything. It only makes our odds better at avoiding these complication risks.

Those of us who have gone to great lengths managing our glucose, after all the effort we take all day, every day for years. It’s tempting to start to believe that while we have held up our end of the deal, it’s only fair that we will dodge all the complications due to our diligence and perseverance.

Unfortunately, that is an unreasonable expectation. There is a lot that medical science does not know about long-term with diabetes and how this disease fully operates. There’s so much we don’t know!

I do think, however, striving to moderate our blood sugar levels does pay important dividends. If we instead chose to be more relaxed about our habits and lifestyle, I do think that things would be worse for us.

Take comfort in the fact that you have actively managed your glucose levels and have done it well. I suspect that if you weren’t as careful and dedicated as you have been that you would likely have more complications and those complications would be more severe and accelerated.

It’s hard to live without worry about “another shoe falling.” Beyond that worry helping to fuel good glucose management, it does you no good except to physically and emotionally wear you out.

I apologize if my pragmatic response is not the one you’re looking for. You’re doing the best you can and no one should expect anything more.

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Thanks Terry. I appreciate your words, and really do know that I would tell someone other than myself, much of the same thing.

I do wonder if Dr. Bernstein would agree with you. I haven’t read his book in years, but I remember that he really focused on reversing and preventing complications with near normal glucose levels.

I think I am just really frustrated since Steve and I have had our share of health problems the last 11 yrs. He too followed Bernstein and The Mastering Diabetes guys.

In 11 yrs he has had 4 bouts of cancer, and a serious case of temporary arthritis which required 2 yrs of prednisone. He most recently has dealt with electrical issues with his heart,
I have had heart stents, cancer, chronic fatigue syndrome, statin caused painful neuropathy and now retinopathy. We manage to heal one problem and before we can turn around we have another. Nothing yet has killed us and for that we are very thankful.

We are both relatively healthy at 70 and 72. I realize another shoe might drop in the not too far off future. That is just what seems to happen to us, no matter how great our diets, or how much exercise we do. I also sometimes feel, like the small pleasures in life are being subtracted for our well-being.

And then we are all having to deal with Covid. Our son has had to cancel his Halloween indoor wedding for 2 yrs now.

I am so happy to hear that your daughter had a lovely recent outdoor wedding. It is a shame that you now have to check for Covid symptoms.

I am sorry, this is just more venting. I am tired.

Marilyn

Today is my son’s 33 birthday. He too has had a life full of stress do to medical problems. I would like to be able to have a fun dinner with him tonight. Once I say no to fat, alcohol,carbs and gluten it doesn’t leave a lot of food to celebrate with. The gluten and alcohol make my neuropathy much worse. I really, really do understand how minute our issues are when compared to the rest of the world problems. Now I am just being whiny.

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@Marilyn6, a T1 without complications might wonder if the hardship of good blood sugar control was worth it. A T1 with complications (like me) can take solace in the conviction that the effort delayed the inevitable. When I was diagnosed, I expected that I would die in my 50’s or 60’s. My outlook has changed. I had to save more money. Living longer costs more.

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You know Helmut it is strange, but even though I was dx in 1959, I can’t remember ever being told that I would die young. In fact when I was a teen, I remember a pharmacist telling me that I would probably outlive most people because of the care I had to take being a diabetic.
I was told that not to chance having a baby though. That is why my husband and I waited 18 yrs to have a child.

Helmut, I am so happy that you outlived your life expectations. Keep saving your money!!

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@Marilyn6, my neighbor was a T1 and died at age 55 from complications right around the time when I was diagnosed. I might have jumped to conclusions. I never asked a doctor about life expectancy and nobody volunteered the information. Information was so sparse before the internet came along. Back in the day diabetes was easy. I stayed away from carbs. Now with pump and CGM it is so tempting to walk the line. And I do walk the line. I am not as disciplined as you are.

@Marilyn6, I can identify with your post. I was diagnosed in 1945 and used animal insulins and did not know much about diabetes for so many years. I did not have a glucometer until 1985. I saw numbers in the high 200s and low 300s, but I did not have any diabetes complications. None at all! I started using fast acting insulin in the late 1900s. Then I started having neuropathy, even though my diabetes management was much improved. I started using a pump in 2007 and a CGM in 2015. Then I had
more diabetes problems. My control kept improving, and my complications kept increasing. After 75 years of type I have severe neuropathy in my feet and legs, and I have a neuropathic bladder. I cannot urinate without a catheter.
I know things would be much worse without the devices I have now. I have concluded that complications are much more likely after a longer and longer time since diagnosis. I talk to an online group of very long term type 1 people, and they are also having problems now, but had few if any problems during their first 50 or more years of diabetes.
I’m sorry that you have retinopathy. I had that in 2007, but it cleared up after I stopped having so many highs and lows. My retinopathy disappeared with tighter control. I hope yours will clear up, too.

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@Helmut, " blood sugar control is only a good complication predictor for groups, not individuals"?? I d not remember that from Joslin reports, but it may have been a topic that I have forgotten.
It makes more sense to me that blood sugar control would be complications predictor for individuals, and groups.

I feel your pain Marilyn. It’s a constant worry for me. I have read that if you are diagnosed while you are still growing, you are more likely to have complications when you get older.

Try to think of it in a different way. You are likely much healthier than you would be if you were not on top of it.
Compare yourself to others in their 70s with 60 years on insulin.

You will see blindness and missing limbs and kidney failure if even living.

It’s got to majorly be defeating to have this new eye issue.
I hope you can focus on how really healthy you are and how hard you worked on that.

From my perspective, you are not defeated you are just working through it.

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@Richard157, what I meant is: A large group of T1s with bad control (high A1C and high glucose variability) has more complications that a large group of T1s with good control. This can be said with certainty. If you just randomly pick two T1s, one with bad control and one with good control, you cannot say with certainty that the bad control T1 has more complications. I remember you saying that you met long-term T1s at Joslin that had bad control and no complications.

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This reminds me of the A1c number. It’s also been referred to as a reliable indicator for diabetes complications in a population, not an individual. I think too many people think that the A1c is a faithful representation of their overall glycemia, but that is just not the case. We fall along a bell curve with most of us near the fat part of the curve and some of us further away in the skirts.

The A1c, with its misleading tenth of a percent apparent precision, is not as faithful for every individual to infer a precise level of overall glycemia. That’s why I much prefer to use time-in-range and glucose variability CGM data as better methods to characterize glycemia. We, as people living with diabetes, should abandon the A1c to the researchers and academics.

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Richard157, your retinopathy cleared up with tighter control and so did the the little bit I had 40 yrs ago. That is why I am so disappointed to have retinopathy suddenly reappear. It would be very difficult to have tighter control than what I have and have had for the last 17 yrs.

I am so sorry that your neuropathy is so painful. I got mine from a statin, but I imagine it is a lot like diabetic neuropathy. Although I still have full feeling in my feet, the burning from neuropathy is horrible. I have read many horror stories about neuropathy.

I read about your more recent trouble with neuropathy and feel so badly for you. I am so sorry that you are having to deal with bladder problems and wish there was an easier solution for you that catheters.

When I think of someone who has had type 1 for longer than I have, I think of you. You have done so well over the years. I admire your perseverance. Thank you for mentioning the problems other long time type 1’s are having. I guess our bodies just get worn out trying to keep complications at bay.

You have done an amazing job Richard.

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I definitely agree.

Marilyn, Chill out!!! You are doing the best you can and we all know life at times is just plain unfair. Frustrations can be harmful, especially to diabetics and people at times do worry themselves to death.

You are in our thoughts and I hope you can relax a bit while you go through this latest ordeal and come back stronger than ever. Keep the faith. We are all rooting for you.

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@Helmut, yes I was told by at Joslin that there were long term T1D’s that had bad control for many years, but they did not have complications. I was also told that there were some with much better control who did have complications. We are all different, and complications can occur short term or long term, with or without good control. I do think those individuals are exceptions to the rule. Good control will usually lessen the likelihood of complications.

Ahhhh come on CJ, give me a day to mourn. :kissing_heart:

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@Terry4, I see A1C as a sanity check. My A1C went up by almost 1% when Abbott changed the FreeStyle strips. After a lot of digging I discovered that my PDM showed BG results that were too low by 22%. I can also see A1C as a tool for doctors that want to check whether what the patient is telling them can be true. I agree with you that A1C is not useful as measurement of success. Too low + too high = good does not make sense. For me time-in-range is the gold standard.

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The point I was trying to make, @Helmut, is that, for example, an A1c of 6.0% equates to an average blood glucose of anywhere from 100 mg/dL to 152 mg/dL with the median point at 126 mg/dL.

That’s a big range and can mislead the patient. S/he may think that a 6.0% A1c means their average glucose is 126 mg/dL when it could actually be much better at 100 mg/dL or much worse at 152 mg/dL. The A1c does not necessarily represent well the actual glycemia unless you are one of the lucky ones who are right at the center point of the bell curve.

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@Terry4, thanks for reminding me. I totally forgot about the wide range. I am one of the lucky ones who is right at the center point of the bell curve.