Thoughts on my "cohort"

I just found out that a former co-worker of mine who was a fellow Type 1 since childhood collapsed from a heart attack yesterday afternoon and might not make it. I wasn't close to this individual, but each time I hear about someone I know in person who has had Type 1 since they were young having a serious health problem I can't help feel first of all bad for them, and second of all a pang of fear wondering if that will be me in 20 years.

I have sort of two groups of in-person people with Type 1 that I know. I know a half dozen people my age who have had Type 1 since they were kids. As far as I know, none of them have complications. Then there is a half dozen people I know/knew who are about 20 years older than me (in other words, mid-50s) who I have met through work or volunteering.

Of the six older people I can remember off the top of my head, four have had heart attacks (three fatal, this latest unknown), one is in the midst of serious diabetes complications (blindness and in and out of hospital with serious foot infections), and one has "only" major neuropathy (can't feel their feet at all).

I think this is one of the things I dislike most about diabetes. The day to day survival stuff, sure, but also the fear of what might happen in the future. Sure, none of the peers my age I know in person have diabetes complications, but every time I hear of an older person with Type 1 dealing with something I wonder if that will be us in another 20 years.

I am at the point now (22 years into diabetes) that I am grateful for every year that passes without something popping up. But I'm also just sort of "waiting" for the day when something does. It's not something anyone in my peer group (early to mid 30s) gets at all. I don't know any other person my age worried about something like signs of heart disease.

I'm not the same as kids who were diagnosed 40 years ago before glucose meters. But neither am I the same as kids who were diagnosed five years ago and benefit from all the latest technology. I wonder what will happen to my "cohort" in another 20 years when we are all in our 50s and have had diabetes for 40+ years.

Just felt the need to post somewhere. Not sure the point of it, really. I don't think of complications all that much, and try not to get all doom and gloom about diabetes, but every time I hear news like this, I can't help but think about it for a day or so. It does scare me a bit sometimes that by the time I hit 50 years with diabetes I will not even be 60 years old, probably not even ready to retire yet.

Jen:

We have to be hopeful. For me i only see progress. My aunt passed after being type 1 for 3 years. This was in 1950. My mom passed after having diabetes for 23 years that was in 1986, she was 48. I have now been diabetic for 39 years and am 56. Our progress has always been steady and yes there are times and people who fall outside the norm for my generation. Right now, I am a little bit outside the norm for my generation of diabetics, only because I have been fortunate. I have lasted longer, and been in better health than i deserve.

Now what makes this growth in life expectation possible? It is not luck it is research, it is volunteering for trials and it is supporting each other. Please understand there are no guarantees, but there are ways to make the most of things.

Here is the secret I found, the one my mom gave me. We have to keep going. We have to do the best we can, we have to support others, and we have to keep going.

Jen I wish you the very best. I offer this live each day, try as hard as you can and do not waste time. I never expected to be alive today, and look I am still going. What will your generation's experience? It will eb what you and research make of it. For the record, I predict great things.

Take care,

Rick

Thanks for your post and pointing out that there has been steady progress. I wish that they would do some updated statistics about this.

I also wish I could participate in clinical trials, but have never come across any. I asked an endocrinologist once (not mine) and his response was that the only research he knew of was for newly diagnosed Type 1s and for Type 1s with complications. But I would love to contribute to research!

Thanks for your encouragement. This is definitely outside the norm for my mood surrounding diabetes. The fact that it's been dark and rainy today, I've been sick this past week, and finally the news I heard have probably all columnated into my mood tonight. I am usually grateful for every day and make the most of each day.

Oftentimes just posting here makes me feel better, even though it doesn't actually change anything. Which is the case tonight. I've always found journalling and writing helpful, and sometimes the DOC and other online communities I'm on act like an extension of my journal. It almost lets me "release" the thoughts rather than having them go round in my head.

Diabetes treatment has come so far in the last 40 years. With modern insulins and monitoring many of us are able to pretty closely replicate the bg patterns of a non diabetic. I have to think that most of us who do our part and put in the hard work will be well into old age before we might start seeing issues… And health issues are a fact of life for seniors whether they have diabetes or not. Just do the best we can and hope for the best…

The strange part is that health problems don't scare me much. I know that I would deal with any health problems that come around now and in the future. It's an early death that scares the crap out of me, whether it's from diabetes complications 20 years down the road or being hit by a car tomorrow ... And the fact that I've had an A1c around 7% for the past 22 years (and that's with trying, not slacking off) doesn't help. I feel like I have a lot more "deadly" things to worry about than the average 31-year-old. I don't think about it usually, but then there's the odd time that I do.

Sorry to hear about them :(, that's awful sounding and is a real fear so I don't blame you. Once I learned that even t1d's have a high risk of cardiovascular problems I've been like oh s!@# because my family has a very very bad history with heart attacks, strokes, and high blood pressure (I am only the 2nd type 1 diabetic in my entire family and I didn't even know the other one and she was long dead before I was born ,however, how fk'd am I? The only consolidation I get is that my uncle is a pre-diabetic and has a higher a1c than I do so I have it slightly better) . with everything about how diabetics need to be on statins, the cardiovascular risks involved , how statins might be bad for you at the same time, yadayada . It's all scary and I, even myself, fear getting to my 50's and I'm only 23. I would love to live the life I used to live and think I could live until 80 and probably not face problems, because I"m healthy and take care of myself, but no, now I have something to worry about and who knows how that'll go.

I know what you mean about stains!! I think that is partly what stresses me out in some ways. Who knows what is right. My endo wants me to take statins and I have always refused, but then I am like, in 20 years will I regret this? I'm also overweight and know I have to lose weight if I want to be as healthy as I can be. I would like to live until I am 80 as well, all my grandparents lived into their 80s and it seems a good age to me. Actually, if I lived until I was 84 then I would have had diabetes for 75 years, which would be kind of a cool milestone to achieve, especially if it were without complications!

Yeah that's my problem, if my doctor wants me to take anything more than prilosec and insulin I'm going to start to get worried about everything. I wouldn't know why they'd want to put me on stuff for my cholesterol though as my total cholesterol was 149 , I don't remember the rest of the numbers but that's under 200 and I was told I'm all good on cholesterol anyway...and I have a feeling it should be fine when pretty much only eat dairy as my only animal product ever (granted I eat a lot of it and probably should cut down on it but I like cheese a lot) . I'm kinda concerned about my blood pressure as it has been higher than usual for two goes now, like lowest pre-hypertensive numbers twice in a row. I am anxiety ridden so this isn't a good idea to even look at my blood pressures. They told me I'm fine though...

Also I agree I'd love to live in my 80's but now I"m thinking 70's is better than 60's if I can make it that long. If I reach the 50 year mark with diabetes that'd be kinda cool though, but I don't see myself making it to the 75 year mark because that'd mean living until 97 if we're talking 75 years post diagnosis. I was proud of that one dude that got the 80 year medal from joslin but that's one thing I don't see myself getting.

Hi Jen,

I'm sorry about your friend, that is terrible. I worry about all of these things too, complications etc. I'm older than you.

I'm not on statins either, my total cholesterol was 205 last time but my hdl/ldl is excellent and I don't have the small high density cholesterol or whatever it is called, I have the good kind. My triglycerides are 32. I think you need to look at all of that to see if you need something. I will never take a statin unless I go very high. I think they're dangerous and I have fibro/muscle pain. I am taking losartan to prevent kidney damage though I seem to do ok on that. My bp is very good, so no problem there. If I were you I would see a cardiologist if you haven't and see what they say about all of this and definitely lose weight, that is a stress on your body no matter what.

I think Rick is right, there has been so much progress and we have to remain as positive as possible and hope for more soon. And remember people do die all the time sometimes suddenly, sometimes with no warning, people without D or major diseases. My mom passed away from a brain aneurysm years ago.

I think my cholesterol is fine. In fact, my endo has said that if not for the fact that I've had diabetes for 20+ years, he wouldn't be concerned about it. If I convert it to U.S. numbers, my total cholesterol is 204, LDL is 124, HDL is 66, and triglycerides are 80. It could probably be improved a bit, but I don't think those numbers are alarming. I was on BP medication for years when I had barely high BP (140/80) during my mid-20s and hated it, and am now being told my BP is fine and was probably never truly high and I don't need medication (by my endocrinologist and cardiologist). I don't want to do the same thing with statins.

I've actually been seeing a cardiologist for the last year and a half due to an arrhythmia I have. He has said my BP is fine and hasn't said anything about my cholesterol, although he's not really monitoring for that. I don't have any signs of heart disease from tests I've had, though.

My cholesterol and other tests (kidney, etc.) haven't been done in over a year, so next time I go to my endocrinologist (which will probably be in the next month or so) I'll need to remind him it's time to do them and see where things are. I know he'll bring up statins, though, because he's basically said he's going to bring them up at every appointment. He says research shows that for people who have had Type 1 for 20+ years and who are over 30, it's best to keep cholesterol lower than 70, and he said they're looking at lowering this goal even more. He said that it's impossible for most people to achieve without medication, even if they are marathon runners and such. I have heard nasty things about statins, but my endo pointed out that the people who post things online tend to be the people who have had negative experiences ... My endo has had Type 1 for years himself, which makes me trust his intentions more than if he was just some random endo, so I don't know what is right sometimes.

What is the major counterarguement to statins? I don’t take any but an awful lot of people do… I’ve heard a lot of objections to then on this site but haven’t really heard why?

jen, im sorry for your coworker and hope they are able to get well.

ive only had t1 for two years and i think about complications often. maybe its because i was diagnosed at 36 and until diagnosis had always taken my health for granted, more or less. i know im a lucky t1 for getting it late, lots of years with healthy hormone balance and metabolism.

like the groups of people you know, i know three t1 people my age, 2 cousins and a good friend, and we are free of complications(three of us diagnosed in our 30s though). the other people i know, all relatives, all type 2, terrible, lingering illness and death due to complications or still alive and really sick: blind, cardiovascular problems, etc.

the fear of complications really gets me down because i have seen what theyve done to vibrant, wonderful people. for me its not the early death, its the possibility that i will be a burden on my family. who will take care of me, will i be blind and on dialysis and not have enough money to care for myself? will i have to move in with a sibling because i am physically unable? i never want that to happen. sometimes i feel like the power is in my hands and the locus of control is in me, lately i feel like its on the outside and that whatever i do may not be enough. time will tell.

im very open about diabetes but this is part of it that i never talk about with anyone-its so morbid!

A friend of my father's had serious muscle and nerve damage from statins: lipitor I believe. she is in a bad way now. My brother believes they are dangerous because they act on every cell in the body, I agree with this. They're well known to cause sometimes debilitating muscle pain. They deplete your body of COQ10 which may make you more vulnerable to cvd and heart attack/clot. So if you do take them you need to supplement that. And there are many other side effects listed at this link below.

I know some people seem to be ok with them, but I would avoid them due to all the problems that have occurred. I don't believe there is any evidence they are needed for everyone or that your cholesterol needs to be that low with D. The HDL/LDL ratio and the density of the cholesterol is what matters. Remember that there is a lot of money being made off of these drugs.

Another point: we need cholesterol. Too low cholesterol has been linked to dementia and alzheimer's.

http://articles.mercola.com/sites/articles/archive/2010/07/20/the-t...

That is good… of course it's up to you to decide and you can always stop them if you have effects. Personally I would go for more natural cholesterol lowering effects first like exercise, fish oils and weight loss etc. as well as a lower a1c. In D higher bg causes higher cholesterol. My endo told me similar things but not below 70, I think that is just nuts, imo. Mine doesn't bring it up anymore because my numbers are very good and I've told him I don't feel they are safe and I have fibro so I won't take them. The losartan on the other hand has been shown to prevent kidney damage and it doesn't seem to affect my normal bp at all… lol. Not much of a bp med. I hope it is protecting my kidneys when my bg fluctuates or goes high.

Hi all. this is a fascinating discussion. Here are my opinions on the topics covered in this thread:
1.I have had type 1 diabetes for 46 years. I will be 59 years old in two weeks. I have tingly, somewhat painful neuropathy in my feet and legs which is greatly diminished if I keep blood sugars in range AND stable without the up and down roller coaster spikes and plunges. No other complications. I repeat, NO OTHER COMPLICATIONS. Eyes, kidneys, heart, FINE

2 I have participated in Denise Faustman's Research at Massachusetts General hospital for since 2010. I will continue to do so, as I believe she is at the threshold of discovering a way to get a generic drug BCG, that has been around for ages, to ultimately lead to a restart of functioning Beta cells. It will not be a cure, but a means to a simple, far less invasive and not at all daily treatment. I believe I will see a treatment like this IN MY LIFETIME, if not for me but for younger persons with diabetes. That is why I participate in her research. For more info go to http://www.faustmanlab.org

3. I do not take statins. I tried Lipitor and Zocor on the advice of my dr.(endo) about 3 years ago. Both gave me low blood pressure, leg cramps, and a dizzy, weak feeling. Had no cardio symptoms, except for elevated BP ( "white coat" phenomenon when in the dr.'s office) and my HDL was 73 . My endo wanted it under 70. Still after 3 months,I stopped taking statins, and I got under 70(66) that year by taking Omega three capsules and exercising daily, and have had grand cholesterol levels (always have, mind you) ever since then. I also do not take statins under the advisement of my newest specialist, a cardiologist. Of my own volition, I did a full cardio work-up in August, since my brother died this year of a sudden, unexpected heart attack at 59. Sudden death from heart disease runs in males on my bio father's side of the family, hence I wanted to check my own cardiovascular health status. "Dr. Cardio" said that he saw no need for the statins that I had been prescribed. He said my cholesterol levels were fine, as well as the EKG, stress test, and C-reactive protein ( CRP) for inflammation results. He told me to "keep doing what you are doing", keep up with the Omega-3's and add one baby aspirin a day.
Here are my latest Cardiovascular related test results as of August 2013:
/CRP: 0.1 ( optimum. lowest risk)
Total cholesterol; 175( normal range)
HDL 105 ( high but not an undesirable high, so I am told)
Ldl: 72( 2 points over 70, but when compared with the other numbers, considered "not at all risky", says my cardiologist
Chol/HDL ratio: 1.8 ( very low risk)
triglycerides: 41( normal)
No problems at all with my eyes nor retinas as of the latest Opthomalogist( sp?) visit on 9/24/2013: I just have "old eyes"; and need bifocal glasses and monocular contacts of differing perescriptions per lens for the " combined nearsightedness and farsightedness of maturity" ( my term for presbyopia) Lol

I have revealed a good part of all my "bizzness" so that Jen and others could see that type 1 diabetes does not mean you are headed to a gruesome deathly downgrade. My a1c is not at all where I want it to be due to stress and willful non-compliant burn-out since back to back family tragedies in 2012 and 2013.It crept up to an unacceptable for me 8.0 ( see my recent post about "...the roller coaster rides". No, I do not like the tinglies and the pain in my feet. I do not like that I have autoimmunine issues: low thyroid, a tendency towards pernicious anemia ( low B-12) and inherited arthritis in my back from my mom and a tendency for inflamed ( ouch ouch) nerve roots in my neck. Yes, getting old hurts sometimes.
But just because one has diabetes does not always mean you will be incapacitated at 50, or 60, or 70. We have such a variety of inidividuals with diabetes and a resultant variable outcomes. Many here in TuD have had a multitude of health struggles and have hung on to a positive perspective. They have more than survived. They thrived!!( See JohnG's post on this discussion thread).

IMHO nothing in life is guaranteed except God's love for us and taxes.

I plan to keep living the life I have, with blood sugar reign in struggles, back aches and tingling feet, to the best of my abilities a long as I can. I do not dwell on my feet rotting off or my kidneys failing.. I believe that even if that were to happen to me ( and I sincerely do not think it will), I would find a way to be actively engaged in a life of passion and purpose: Just my two cents

God Bless
Brunetta

thanks brunetta! passion and purpose-lovely.

This is what turns me off - I know someone (in person) who is around my age who started statins because of Type 1 and has permanent nerve damage now because of it, even after stopping them. Other than a heart attack/stroke (or something else that might kill me) neuropathy is the biggest diabetes complication I don't want.

I'm in Canada, so the guidelines are slightly different, but it wouldn't surprise me if they say the same thing. Similar for blood pressure medication.

I think if I had an A1c of 6% (and had similar my whole life) and was a at a perfect weight and such I would probably not worry half as much as I do ... Although my endo wants to work with me to get mine lower, I have only once in my life gotten to 6.4% (with too many lows) and so I don't expect I will ever see the low 6% or 5% range. (I am aiming for 6.7% or 6.8% and if I can hit that and maintain it, I would be ecstatic!) It's one of the biggest differences I feel between me and, say, someone who was diagnosed at 35 and a) has far fewer years of diabetes to live with and b) has never had an A1c over 6.0% other than diagnosis. I think that's the line of thinking my endo is going with when he's recommending a statin. But the side effects (and mostly the fact that from what I've read/seen, those side effects can be permanent) really freak me out ... but not as much as having a heart attack in 20 years.

Yeah, that is the thing, it's such a taboo subject. My parents have occasionally said they are worried about me, and I know it's because of the possibility of complications, but otherwise this is not something I have ever brought up in person. The funny part is that I have lived with chronic illness and disability my entire life and led a full life, been completely independent, not been a burden on anyone, so that doesn't worry me. Also, living in Canada where finances will likely not be an issue probably helps. I am sure whatever comes along might suck at first, but I will deal with it. What scares me is dying, because obviously I have no control over that. And I know that THAT would have a huge emotional impact on people who care about me and I would feel so terrible about that. (LOL, sounds kind of funny I'd feel bad about dying, but I would!)