Jump to content
Diabetes forums
  • Welcome To Diabetes Forums!

    Registration is fast, simple and absolutely free so please, join our community today to contribute and support the site.

Archived

This topic is now archived and is closed to further replies.

CindyO

Type 1 for a Long, Long, Long Time?

Recommended Posts

CindyO

How many of you have had type 1 diabetes for 35 years or more? Have you suffered any complications, and if so, how long had you had t1? I'm also curious as to how many of you have developed other auto immune problems, and when. Has your ability to control your diabetes changed much as you entered your 4th decade of living with t1?

 

I know these are a lot of questions, but I've been discouraged over the past 8 months because of issues I mentioned above. Thanks for your input.

Share this post


Link to post
Share on other sites
lgvincent

I developed Grave's Disease in 1996 but I doubt that it's related to diabetes.

 

I have some nerve damage. I have some numbness in the fingers. I also have some numbness in the toes and that runs up to the knees but it's rare and very mild when it occurs. I do have problems eating. If I'm not careful, I can get intense pressure. So bad that at times it has made me regurgitate. The doctors I've spoken to think it is caused by nerve damage.

 

I have been spilling protein in the urine, too, but so far it's not too bad.

Share this post


Link to post
Share on other sites
JediSurfer

I am coming upto my 29th year of diabetes, I am currently undergoing investigation for suspected Coeliacs desease which I am told is related to diabetes, but the problems I am having could be caused by autonmic nerve damage wich could be caused by diabetes or could be caused by coeliacs.

Have a little neuropathy but it isnt too serious and seems to be if I've have had high numbers for a few days.

I can remember my father had serious trouble controlling his bg's after about 40 years of T1 but that could have been caused by the huge about of meds he was taking for the many complications he suffered.

Share this post


Link to post
Share on other sites
xMenace

32nd year. The backs of my eyes look like Iraq from the air, but I still somehow have 20/20 vision in both eyes. No other complications.

 

How's your A1C? That is my focus now. I hope to get sub-six this summer.

Share this post


Link to post
Share on other sites
BriOnH
How many of you have had type 1 diabetes for 35 years or more? Have you suffered any complications, and if so, how long had you had t1? I'm also curious as to how many of you have developed other auto immune problems, and when. Has your ability to control your diabetes changed much as you entered your 4th decade of living with t1?

 

I know these are a lot of questions, but I've been discouraged over the past 8 months because of issues I mentioned above. Thanks for your input.

 

30 years, minor wear and tear.

 

What about you?

Share this post


Link to post
Share on other sites
Mick

I was diagnosed in February, 1966 at the age of 13, and sent home from the hospital with one glass syringe/needle combination, which I had to boil in a pot on the stove before every injection. Twice a month, my dad would take it down to his workshop and sharpen it on his whetstone. I got my blood glucose measured twice a year. Now in my 42nd year of diabetes, I have had a few issues, but I remain basically pretty healthy for a 55 year old. I had a heart attack in 1999, suffered no heart damage, underwent triple by-pass surgery, and have had no further cardiac problems. Most of the blockages have actually repaired themselves, due to my aggressive medical routine (lots of pills) and exercise routine (lots of miles each week on my bicycle.) In fact, I'm probably in as good shape now as I've been in my entire life. Eyes remain without a trace of diabetes, and I have never spilled protein into my urine, so kidneys are so far perfect. I have had some connective tissue problems on and off throughout the years--carpal tunnel (now quiet) elbow tendonitis (also better lately), trigger fingers (treated several times with cortisone injections, now good, knock wood...), frozen shoulders (in recovery stage finally) and hand stiffness (used to be called "diabetic stiff hand syndrome", now called "cheiroarthropothy"). My HgA1c can run anywhere from 6.2 to 7.4, and strict control is always a roulette wheel of guessing and changing. Sometimes my control is routine, easy and very even, other times it is a struggle to keep my glucose anywhere near normal, and I may bounce from 45 to 375 to 65 to 260 to 92 in one day. Other days, I get readings in range all day, for several days at a time, with little effort. Whatever worked well today is sure to stop working tomorrow...

 

good luck, and keep the faith,

Michael

Share this post


Link to post
Share on other sites
CindyO
30 years, minor wear and tear.

 

What about you?

40 years - I was diagnosed at age 7 in 1967. I haven't had too many problems until the last year or so. The biggest issue is severe hypoglycemia unawareness. My endo says we'll get it under control. Guess I hate the out of control part of it for now. I also have auto immune problems with a hyperactive thyroid and a new diagnosis of rheumatoid arthritis. I didn't expect to feel so old so soon!

Share this post


Link to post
Share on other sites
numba1

I've been discouraged a lot as well regarding the issues mentioned by Cindy O albeit for a different reason. Why is it that a lot of docs as well as websites paint a negative picture? Is it because recent advances haven't had enough time for the benefits to show up or they'd rather err on the side of caution and hopefully, make a little bit more $$$ as well.

Share this post


Link to post
Share on other sites
JediSurfer
and strict control is always a roulette wheel of guessing and changing. Sometimes my control is routine, easy and very even, other times it is a struggle to keep my glucose anywhere near normal, and I may bounce from 45 to 375 to 65 to 260 to 92 in one day. Other days, I get readings in range all day, for several days at a time, with little effort. Whatever worked well today is sure to stop working tomorrow...

 

good luck, and keep the faith,

Michael

 

That is so true Mick. Sometimes I have perfect control for day or weeks at a time. Then get up one morning doing exactly the same as the previous days and all everything changes. Bounce around all day for no reason at all. That really used to annoy me years ago but now I have learnt that its the nature of the beast. And adjustment is needed hour to hour and day to day.

Share this post


Link to post
Share on other sites
ant hill

I have had this disease since '71 and i was just 10 YO = 36 Years. Just lately i have had a stroke and some eye damage in the right eye. My A1C was quite good like 5.8 - 6.6.

On diagnosis, I was thin and they thought that i was not eating yet i was so hungry i would eat just about anything that was in front of me. Today i am overweight and in control of my Blood Glucose and so most of us who are this way have a struggle of get the weight off. So the Irish in me, Touch wood that there is no more diabetes affected ailments to tend with so now it's getting back on the bike and get fit again and keep the computer off. :)

Share this post


Link to post
Share on other sites
JediSkipdogg
I've been discouraged a lot as well regarding the issues mentioned by Cindy O albeit for a different reason. Why is it that a lot of docs as well as websites paint a negative picture? Is it because recent advances haven't had enough time for the benefits to show up or they'd rather err on the side of caution and hopefully, make a little bit more $$$ as well.

 

I think part is due to new advances haven't shown up yet and the other part is they want to err on caution. If doctors simply told you that youl could use modern technology but still run whatever, do you think you'd be in good control? It's showing you what may happen if you don't take and stay in control.

 

The first part though is there haven't been any long term studies on complications recently. And if there was one, it would truely take 30+ years to find out what complications come from modern control methods.

Share this post


Link to post
Share on other sites
Gordonm

I have had type 1 for 34 years and no complications so far. A frozen shoulder about 5 years ago that took 2 years to work out. My eyes are clear bllod work is great. Went to a cardiologist and he painted a gray picture. He said someone with type 1 for 33 years is going to have a problem. I made him eat his words and he wanted to use me as a poster child for his office. A1cs have been in the 5.8 to 6.2 range for the last 10 years. So much has come along in the last 34 years to make it more liveable and heathier for us. I know the first 10 to 15 years were not in good control as we had nothing to really test with. The urine testing by nowadays standards was a joke. I agree with Mick, most days are pretty good other days there are wild swings for no reason. You just have to keep plugging away and do your best.

Share this post


Link to post
Share on other sites
REDLAN

wholeheartedly agree with the

 

"one day it works, and then for no apparent reason it doesn't" sentiment. Seems that most of the time I'm playing catch up.

 

I think the really hard thing to get your head around is that good control relies on your ability to predict how your body WILL respond to the insulin/food/activity you are about to do. When I inject my basal - I'm having to account for what my base level of activity is going to be for the next 24 hours - which makes adjusting your basals for intense activity interesting - "What do you mean you're not coming cycling because it's raining? - no I don't want to do a short route - I've eaten and injected for a hilly 25 miler." (conversation with a mate a couple of weekends ago)

 

The way I look at complications is not what, but when - the better quality treatments mean that not only is my life expectancy increased, but that the quality of that life is increased as well. Hopefully I get better health for longer. But as has been pointed out it would take 30+ years to show a difference - meanwhile it's 25 years, and no major problems apart from frozen shoulder and problems with finger joints which have as much to do with my levels of physical activity as they do with diabetes.

Share this post


Link to post
Share on other sites
GrammyByer

dear CindyO,

Well, I've had D for 361/2 years now and I'm on a pump now. The pump helps me maintain much better control - my A1c's range from 5.9 to 6.7. I do have a few issues though:

 

1. I have neuropathy in my feet and this has caused some bone deterioration. I wear orthodics in my sneakers at all times. My podiatrist is keeping a close eye out for charcot disease. Last einter I was in a cast for 4 weeks due to stress fractures in my right foot. It is better now.

 

2. I have hypoglycemia unawareness pretty badly and I can drop to a 26 at the drop of a hat without knowing what happened. Thank god for my husband who has brought me back to consciousness many times. I'm fighting my insurance co. for a CGM.

 

All else is good, with the help of bllod pressure and cholesterol meds.

Share this post


Link to post
Share on other sites
klpants
That is so true Mick. Sometimes I have perfect control for day or weeks at a time. Then get up one morning doing exactly the same as the previous days and all everything changes. Bounce around all day for no reason at all. That really used to annoy me years ago but now I have learnt that its the nature of the beast. And adjustment is needed hour to hour and day to day.

 

True for me too! Thought I was unusual. Yep, everything goes well do the exact same thing then bs all over, can't work out why?

 

As for me, Type 1 for over 22 years and hypothyroid. Get very cold extremities too.

Share this post


Link to post
Share on other sites
VinceF

t1 for 40 years since I was 5, retinopathy, neuropathy, trigger fingers, carpal tunnel, vitaligo (sp?) I'm sure I'm missing something. Geez when I spell them out I feel a lot worse than I am

Share this post


Link to post
Share on other sites
JediSurfer

Nice to hear from someone whom was diagnoised at an early age. I am always interested from input from infantile diabetics as we seem few and far between on the forums. I was three years old at diagnoisis.

Share this post


Link to post
Share on other sites
Ailsa

Hi Cindy, Ive had D for 41 years & have no complications.

No other autoimmune problems either.

My A1C has been around 6.8 for the last 2 years & in the 7s for about 20years before that.

The first 20 years it would have been all over the show.

Advances in teatment have made control easier, but I'm not obsessive about it.

 

I think the bad stats come from 2 places.

The first is that a some T1s exert poor control. The people on the board are probably more motivated than average, otherwise they wouldn't be here. Statistics are only an average.

I think the second reason is that in a lot of stats, T1 & T2 are lumped in together. Keeping in mind that a lot of T2s are diagnosed when they present with complications, that creates a slanted picture of reality.

 

I actually get quite mad when Drs start telling me that Ds tend to get this or that.

The last one I went to said "Do you know what most T1's die of?"

I said "Old age in my case"

He said "You're probably right" and left it at that!

Share this post


Link to post
Share on other sites
Michael R Zeigl

This spring I will have had insulin dependant diabetes for 48 years. For many years I was on one injection if NPH per day. I hate to think of what my A1c was for those years. Today I am on a pump and my A1c's range from 5.8 to 6.2. I had some slight retinopathy years ago, but have not seen any progression for some time.

Share this post


Link to post
Share on other sites
tanyatype1

Ya know what? I LOVE this thread! I've only been type 1 for 2years, and upon diagnosis, was very scared (as most are) about my "uncertain" future. Now, and especially after reading these posts, feel happy and very confident that my future can and WILL be just as happy and healthy as anyone else's! As long as I keep fairly tight control, which is becoming easier as time goes on. Being diagnosed with D isn't all Doom and Gloom 'till death do you part!

Share this post


Link to post
Share on other sites
Jak

Hi Cindy. I've had type 1 diabetes for 43 years. I was diagnosed at 10. I started on one shot a day of Toronto (regular) and NPH in 1964. When I started pumping 3 1/2 years ago, I was up to 6 -8 shots a day of Humalog and Humulin in an attempt to reconcile my grazing style of eating with good bg's.

 

Despite the poor control I had in the first dozen or more years, I've done quite well with only very minor complications other than the retinopathy after the birth of my second son at age 30.

 

At 53, the retinopathy - I had pan photo coagulation (laser) treatments 21 years ago - and other eye problems are gone. I saw my new ophthalmologist in August last year (the "old" one retired). He examined my eyes and described them as "beautiful". (He was talking about the interior, not the exterior.)

 

As far as other "complications" go, the skin on the tips of my fingers peels from time to time which I'm told has something to do with diabetes. Whenever it happens, I put on a zinc-based ointment for a day or two and it clears it up. Then I can ignore it for a few months until it happens again. I suppose I could take zinc supplements, but after a bad experience with those about 15 years ago, I no longer do.

 

I also have bursitis which supposedly can be caused by diabetes. However, the only time I have a problem with it is when I've played Tetris (on the original Nintendo system) for several hours for several days in a row. (Yes, I'm addicted, but it has nothing to do with diabetes. :D )

 

I have no kidney problems, no heart disease, no circulatory problems, no gastroparesis or other neuropathies, no trigger finger, no carpal tunnel, no kidney problems, no problems with slow healing, no foot problems. In fact, I had my foot run over by a car a year ago and although I was plenty worried because of the diabetes and foot problems, the breaks healed well and on time, and when the swelling and bruising disappeared, my foot was almost as good as new. (I now have some scar tissue on the bottom of my right foot which makes it a bit thicker than the other, and the pronation of that foot - which I had before it was run over - may be worse because of it. The podiatrist is not sure.

 

I have had colon cancer which is more common in people who have diabetes. In fact, I had a friend with type 1 diabetes who died from it the day before my surgery for the same disease. She was 39 when diagnosed. I was 43. Whether the cancer had much to do with my diabetes, I'll never know. I had many other risk factors including second-hand smoke and a loop in the colon that apparently occured after my second C-section. I guess I'll never know for sure, but it did strike me as really odd that Joanne and I both had type 1 diabetes for many years, and we both got colon cancer so young. Most cases aren't diagnosed until people are in their 60's, 70's, and 80's. I did quite a bit of reseach and more and more studies are showing a link. However, as mentioned, whether having diabetes was a causitive factor, I'll likely never know.

 

My A1c's have been between 5.3 and 6.4 ever since they started testing me. My lowest was the 5.3 taken shortly before my first son was born. It happened to be my first ever A1c. I can't say my bg's have always been as good as my A1c's over the years, but I've done well in spite of all the highs and lows. (The bg's have been more stable since I've gone on the pump.)

 

After 43 years with diabetes, I'd have to say that in my case, the longer I have it, the easier control gets. I'm not just older, I'm wiser (I think!) Even though menopause is approaching, which has its own ups and downs as far as bg's go, my attitude has changed which is bound to make control better.

 

As for other autoimmune problems, I have several: hypothyroidism, vitiligo, pernicious anemia, and parietal cell antibodies which prevent my stomach from producing enough acid to properly digest my food. (Parietal cells are also implicated in pernicious anemia.) I'm hoping they start finding cures for this stuff before I get something serious like multiple sclerosis.

 

Jak

Share this post


Link to post
Share on other sites
KickStart101

Hi CindyO:

 

Sorry to hear that you were dxd. with those.

I was dxd. with Juvenile at age 3 and RA

at age 24/25. Hypothyroidism around age 38

and other stuff.

Certainly everyone here has been discouraged

more than once......

 

I've been through a Bunch but I'm doing Good

now after 45.5 yrs. of Diabetes. All my tests

are coming back Good at this point. (KOW) RA

is not as Good for the last almost 2 yrs. My

immune system sucks so the drugs don't want

to play ball. 'Tis Life, eh?

 

Best Wishes to Ya. :)

Share this post


Link to post
Share on other sites
orsaugen

Diagnosed T1 in 1944 in wartime Norway, hence 64 years with diabetes. I am going on 70 years of age, and did not pay enough attention to managing the disease until I retired a few years ago. Hence a fair amount of neuropathy (two toe amputations), glaucome and retinopathy. Now I am doing splendidly with the new isulin regimens that have come about, and with DexCom CGM which lets me keep my glucose below 100 most of the time (which I can do because the CGM lets me know if I drop too low). I switched to the new DexCom Seven last Thursday, and it is even better than the first three-day version. We sure have come a long way since we were stuck with the crude tools we had to work with back when I started!

Share this post


Link to post
Share on other sites
numba1

hmmm, looking at the "old-timers" here without much complications, i wonder why there is so much negative press about D. Is it because most judgements are based on outdated research or the users on this forum are better informed and are able to achieve better control than others or is it cause some don't like talking about their problems? On a side-note, i read that a type 1 got a private pilot's licence recently. 3 cheers, i guess for a small victory.

Share this post


Link to post
Share on other sites
xMenace

This is hardly a representative sample of type 1's. I think the people that gravitate here are the 'keeners'. Most teens and young adults whose comments I read elsewhere on the net are very cavalier about control. If you are on facebook, check out the posted a1c's on some of the diabetes groups. There are some great ones, but overall it's not a pretty picture. I have a number of type 1 aquaintances. Some do very very well and others are very close to being blind. One died of a heart attack in his mid-30's and another in his mid-40's.

Share this post


Link to post
Share on other sites

×

Important Information

By using this site, you agree to our Terms of Use.