Type 1 Diagnosed at a later age


(Linda) #21

My story: Well, I knew type 2 ran in my family (I later learned that T1 does also) but refused to admit I might be diabetic. I started peeing thru the night many years before diagnosis. Hubby and I went keto and that helped. Then I was turning into a very angry person. Talk about road rage, I was there. Hubby “who are you and what did you do with my wife?” I took a riding lesson one day and when I was dismounting got a terrible pain in my ribs. Thought maybe something was broken. Nope, no broken ribs, but still very tender under the ribs. I was very concerned and finally decided I better find a doctor. I was “sort of” lucky that the nurse practitioner I saw was a diabetic specialist so she spotted the diabetes right away. Of course no one cared about the pain under my ribs and they still don’t. Anyway, first diagnosed as T2, given metformin and had more tests (for GAD and Insulin levels). As soon as those tests came back she wanted to see me right away. She sent me off with a quick training session and everything I needed to get started. She wanted me to start dosing pretty high. I started very low and worked my way up to what worked for me. I probably would have had a trip to hospital with hypo if I listened to her. And she was all panicky with me. I quote “you are going to die if you do not take insulin!”. I did not like her much at all but I’ve learned a lot on my own along the way,. I am on the 670G and love it. It can be quirky at times but over all has improved my quality of life and at times I can even forget I am a diabetic. I’ve never been told to go on blood pressure meds, but they insist on statins. Why? Because all diabetics go on statins. What ever happened to us being individuals? Hows that for a long ramble? LOL :smiley:


(Kathleen) #22

Not a long ramble at all. And I completely understand your journey. I am also on the 670G since October. It was a frustrating start (which I was told it would be) but with a new transmitter (started today) I am looking forward to what comes next. I hope your twins are ok. My daughter was tested and she does not carry the gene. My son does not want to take the test, although I wish he would. He is the father of three daughters and I would like to know that they are ok. My Endo suggested the test. She is a Type One and has two Type One children. Please stay in touch. This forum reminds me for the first time that I am not alone as an adult. Thank you!


(Andy) #23

I was lucky. My wife was not with me when I got my diagnosis. If she were, I’m sure I woulda spent my time talking her out of the stratosphere.
It was bad enough she googled “diabetic complications”. Unbeknownst to her, I had already done that from the parking lot of the medical center, right after that first appointment (might as well rip THAT band aid off all at once) so every time she’d read about some horrific complication and then glance at me, I stayed calm.
“oh my God!!! have you seen what will happen if you get a splinter in your foot?”
“Oh my God!!! Do you have these things called Keytones? Hurry…go check!!!”
“Karl at work…his great aunt had diabetes…she had a stroke…”

I truly believe all of this is harder on those watching from the sidelines…


(Kathleen) #24

You should really write a book. My husband and I are really enjoying your posts. Tim has finally stopped asking what is your BG every time I take it. I don’t check for Ketones. I am on blood pressure medication (lowest dose cut in half) and cholesterol meds. Not because I have ever had problems, but because I am a Type 1. Grrrr. I never liked taking any meds. I do have Hashimoto Disease caused by the diabetes. So I take a med for that. I see my Endo every three months which I am hoping will be less with the 670G.

Thank you again!


(Harvey) #25

Diagnosed at 75. Caused as a side effect of Keytruda.


(anniceskates) #26

Hi I was diagnosed at 53. A complete surprise however looking back the signs and symptoms were there. I lost 26 pounds, many rushed trips to the bathroom and drinking tons. Eye sight got really bad and I went to Costco for my first pair of glasses. They said “ wow how are you driving “. I thought well my parents said overnight you will need glasses. I’m the last one in my family to get them. I am a teacher and brushed it all off to the hot weather and being the end of the school year. I got sick just before being diagnosed. Took the day of work to go to a funeral. That night I started asking the cat to bring me water. My husband knew something wasn’t right and tried to get me to the ER. I collapsed on the staircase so he called 911. Paramedics asked my husband how long I had been a diabetic??? I was in DKA. 4 nights in ICU. Diagnosed as a type 2 because of my age. I don’t remember anything that happened for 4 nights. Went to a new primary care Dr. who sent me to an endocrinologist who tested my for type 1. Two months after hospitalization confirmed as a type 1. Eyesights came back 100% and Costco took the glasses back for a full refund. I have been attending JDRF Act 1 and TCOYD support groups. Much more helpful then diabetes educators. I use Dexcom and just started Omnipod 2 weeks ago. Love them both!


(Kathleen) #27

Oh my goodness. That is a horrible side effect. God bless you!


(tomlinn) #28

diagnosed at 69, two and a half years ago…


(Kathleen) #29

You think you have led a good life than bam. I wish you the best. Thank you for sharing. It’s nice knowing we are not alone.


(Andy) #30

Have you ever attended the TCOYD One event in San Diego?


(anniceskates) #31

Yes I attended the One conference. I highly recommended it to any who hasn’t been. I made some new friends and even participated in a focus group. Great information and lots of fun.


(Dennis J. Dacey, pwD) #32

Kathleen @wittersk, Autoimmune, TypeOne Diabetes does not usually travel in families. I was diagnosed with true autoimmune diabetes 62 years ago and none of my children or grandchildren have developed diabetes of any type.

Type 2, which is usually caused by certain lifestyles usually follows in families because of habits, eating choices, etc. are developed by imitation. Also, MODY Diabetes which is neither TypeOne nor Type 2 diabetes but rather caused by an inherited gene pattern is passed from generation to generation; i.e., inherited.


(Charles) #33

I’m 57 and was diagnosed at 53. Been areal blast. Once diagnosed, I started doing all the things I was supposed to. I had more lows than Carter has pills! Told the endo about it spent months figuring out what to eat etc. still going lower at strange times. Like 2 to3 hrs after eating. Finally got fed up with it just started eating like I used to. Evened out, much better!
Now six months passed. I lost eyesight. Diagnosis wet Maclean degeneration. Eyesight 20/400. 3 1/2 yrs later. Mapproximately 60 eyespots later. I’m not yet back to driving yet, but should make it soon. I hope! Oh yeah could not eat fruit at all. Severe issues with eating just one strawberry. 6 hrs in and outta the bathroom. Lasted for 2 yrs. Then all of a sudden could eat fruit again!
During all that fun, I got a CGM G5 series and started looking at foods I eat etc. I eat things nobody else does that is diabetic that I know of and no real issues. Unreal to say the least. Well with cgm I had proof of what was going on and told Dr about it, showed him daily print out of levels. Eating the fruit and drinking Beer ( not lots, 2 or 3) would level me out for a day or two. No real highs or lows. Amazing!
Got ok to eat or drink whatever I want. As long as I keep #s in line! No problem there. I’ve never shown higher than 6.0 A1C. Since diagnosis that is.
Someone mentioned memory loss and emotional responses. For awhile I would cry at commercials. Ball like a baby! Memory loss, good lord, I still have issues with that. Feel like a blooming idiot sometimes. Short term still not great. I can walk in the bathroom to pee and brush my teeth and come out I peed but don’t know why else I went in there for! My wife will say gonna brush your teeth? Like a three yr old I go brush my teeth!
Oh yeah, neuropathies! Somewhere amidst all this got them showin up. The fun one was my skin on fire when the air from the heat/ AC came on. Felt like a sunburn/ windburn. From other problems I found solution, or rather a control of the neuropathies in general. Daily Cialis! Works like charm. But insurance won’t cover it at all! So I order it out of Canada.
True costs here. Had to get new scripts. So drugstore started filling em. Told us that Cialis script was ready cost $808.80.
I get minty day supply from Canada for generic for $87.50!

It’s been a wild ride so far! I just wonder what’s next.

Oh yeah anybody else have fun trying to get test strips? They want me to use 100 in 90 days. I use 4 per day just to calibrate the CGM! Never mind any other testing I’m supposed to do! That doesn’t even account for the ones that don’t work!


(jjmnav) #34

From the responses I see, guess I wasn’t at a later age. But when I was told I had Juvenile Diabetes at the age of 30, I questioned their diagnosis.


(Donna) #35

Hi, I was diagnosed at 56. My first sign of having this disease was one day at work I was walking down the hall with 3 people walking towards me and I had no idea of who they were because my eyes wouldn’t focus. Went to eye doctor and asked him why my eyesight would change so fast. He said that it didn’t change fast OR I was diabetic. WOW this from my eye doctor. Asked my Dr. To check my blood sugar. She said there was no reason to. Nothing in my history would indicate diabetes. Made appt with her for following week to figure out what was going on. Ended up in emergency room within a couple of days. Was told you keep my dr appt and said yes, I was diabetic. Before dr appt happened I ended back in emergency with DKA. That was 10 years ago.


(gata) #36

I was diagnosed with type 1 diabetics at 54


(Marina) #37

I read the comments through to the end — fascinating! We are indeed in good company. I was diagnosed at 71, 12 years ago. I knew a bit about diabetes: mother had it, grandfather died of it ( long ago and far away — at the age of 45, before insulin) I think by own case was precipitated by extreme stress — a granddaughter born at less than 2 lbs, less than 12 " ( she is doing great, by the way.)
So when I began suffering from unquenchable thirst, I became suspicious— and finally called my physician for the results of a recent check up. My sugar was up in the high 400’s, though no one thought it necessary to inform me. He sent me to the emergency room, where I was dosed with ( what I later learned ) 20 units of the slow acting insulin. Again, no one checked what and whether I ate, and when I experienced a dreadful headache, I was sent for head scans — never mind the logical reason.
For the longest time, when I look back at my records, I had consistently high readings, because I was terrified of going low.Now I am stabilized, and know how food affects me — and mainly, I learned that I can safely lower a high reading with small doses of Novolog, or respond to a low with apple juice boxes. Getting up at night for a bathroom run is no fun, but since I get to test my blood, I remain in control — and fortunately can fall asleep almost instantly.
I have resisted going automatic because I trust myself over anything and anyone else— control freak? Maybe, or maybe something I learned form long experience.
I am encouraged when I meet people who are along in years, and who have handled diabetes for their whole lives ( over 80 years !). Some of them tell of the days when they tested their urine for sugar (as my mother did.)
I try to keep informed and am grateful for an optimistic disposition —and all the good people and things that have come into my life since the diagnosis. Love hearing about the accomplishments of the young people who take their diabetes in stride.


(Kathleen) #38

Thank you for sharing. I hope all is going well for you.


(Kathleen) #39

No I have not. I am part of a family foundation that supports CMN in Hershey PA. Thru CMN, we were approached by the local JDRF to assist them with the major fundraiser. I am looking forward that adventure.


(Kathleen) #40

That is later then most from what I have read.