Type 1 Diagnosed at a later age

(Kathleen) #41

I understand about the eye appointment. My eye doctor asked me if I was diabetic. Heck no. Went for my yearly physical after completing blood work and bam…diabetic.

(Kathleen) #42

Thank you for sharing. I thought I was alone and on this forum, I have found so many diagnosed after 50.

(Kathleen) #43

Thank you for responding. What a story. We are all blessed to have this forum where we can feel part of a group.

(Janet) #44

Was diagnosed 1/10/19 at 42. Have family history but now it’s my turn.

(Ami-one) #45

Diagnosed at 23, T1. Blood pressure is the only thing that works well. :joy: thankful for that! Never heard of T1s having HBP. Lazy Thyroid and high cholesterol? Yes - all endo system related.

(Jess) #46

I’m with you on the pump, Andy. I was diagnosed last March, so I realize I may change my mind, but the idea of having something attached to my body all the time and making decisions for me… I’m just not ready for that. I did try the dexcom and liked it well enough, but after time got tired of the soreness in my arm (I know you are not technically supposed to use it there) and the alarms waking me up in the middle of the night needlessly. I am going to try the Libra soon - no alarms and less electronic connection I think. I am sort of still struggling with the idea that I have diabetes. Like you, no family history of that, but plenty of autoimmune issues…


(Jess) #47

I forgot to say that I was diagnosed at 49, right before my 50th birthday. Also, reading through the comments from others, I guess I feel sort of lucky. Then again, I am likely still in the honeymoon phase. When I was diagnosed, my Fructosamine was over 700, and the doctor said she had never seen one that high (that was reassuring…)! She did not hospitalize me but said she could have. Like another writer, I did not notice drinking more water because I have always drunk a ton. But working out became very difficult and I was losing muscle mass like crazy (down to 94 lbs)… Can anyone tell me about TCOYD One?


(Carolyn) #48

Hi Janet! Welcome, welcome to the club no one wants to belong to but where we’re strengthened by our contact with each other. :smiley:

(Carolyn) #49

Hi Kathleen, so happy to see your post, I have been desperate to connect with other later-diagnosed T1s since my diagnosis in 2016.

At age 58, I was in my last quarter of nursing school. Working nights, school during the day… I felt crummy all the time, just thought it was because I was an old girl trying to do a young thing. Losing weight, peeing constantly, blurry vision…it’s all just exhaustion, right? One early morning I felt so weak! Wondered if my BG was low. I grabbed my husband’s glucometer (he’s been T2 for years). “…286?! This thing is obviously not working correctly.”
Next day at Dr., BG 469 (!) “You are T2, here’s your metformin.” I was too stunned to ask, but why am I losing weight? This wasn’t making sense to me. Took months for an endo appt, then more months to convince them to put me on insulin, even after GAD antibody test was positive! Sheesh. Of course, insulin makes life very complicated, but I FINALLY stopped dropping weight. Why did none of these practitioners notice I’d lost 40 lbs? It was right there on their chart as they greeted me each visit.

Fast forward to now. I have a blessed life and many things to be thankful for. But I find this a frustrating and sometimes lonely journey, this T1D life. My husband gets an earful when things go wrong…I try to tell him, “I’m not complaining, I’m just educating you.” :laughing:

So grateful to have others here to connect with, who have similar stories.

(Patty) #50

Continuing the discussion from Type 1 Diagnosed at a later age:

Was diagnosed just shy of age 20
Am currently 59 have been on a insulin pump for at least 16 years ? I was a Minimed user prior to Medtronic acquiring them

I still have doctors list me as a type II

(Suzy W) #51

Hi Kathleen, I was diagnosed at 23 in 1987 - that was considered older for T1D at that time - I wanted to let you know about the “cocktails” that doctors try to tell you you need to/have to take. They want you on statin for cholesterol and the heart meds, which they want you on more for protection of your kidneys than for blood pressure. I used to succumb to their pressure to have me on them, not anymore. Statins do more harm than good, in my opinion. In my case they raised my creatine kinase to over 800, and that reading was 3 weeks after I had stopped taking. I had complained of achy muscles for years before doc tested me, and I had to finally ask for the test. I now just say I am allergic. The blood pressure meds made my normally low blood pressure get dangerously low so no to them as well. Doctors do more CYA for themselves than to help you, and I’ve never been a fan of any endocrinologist I’ve ever seen. Waste of money. I’ve received the best help for certified diabetes educators and my The Diabetes Solution by Dr Bernstein and his monthly UTube series Y1D University and also Think like a pancreas. The best advice I can give any diabetic who doesn’t already know - be informed and don’t let doctors bully you. You know more about you than they do. Best of luck and take care. Oh and the only struggles/possible complications I’ve had are with my joints and fascia, no heart kidney, eye (except for the blurry vision at onset due to BS so high at 879, which cleared up after the residual sugars on the lens cleared away). Happy dosing! Attitude is EVERYTHING!

(Andy) #52


I went last summer to the One event in San Diego. I thought it was great. It was really my first excursion into support groups. Lotsa good info given but it wasn’t presented like a bad medical textbook. The breakouts were fun and informative.
I think the best part was the overall relaxed atmosphere. There were about 300 people in the general sessions and 90% of us were hooked up to some sort of noise-making monitor. Every time an alarm went off, 270 people started reaching for their CGM’s.
TCOYD picked a resort right on the bay so there was alot to do in the off time. They had scheduled exercise times and social events and a diabetic tradeshow to keep people engaged.
all in all, I thought it was great. I’ve already booked a room for their upcoming event this August.

(Hannah Strickland) #53

What an encouraging group this is! I was diagnosed at 42 during a physical. It was honestly horrible. It has been a year and a half now and I’m doing much better, but it is awfully nice to know there is a community such as this. Thank you.

(Stephen) #54

I was diagnosed at 5. I am 50, so 45 years of hell for me.

(Kathleen) #55

That sounds like an event I will have to find on the east coast. Still not will to fly yet with all the gadgets I wear.

Thank you!

(Kathleen) #56

It does get easier to handle. This community has been a moral booster.

(Kathleen) #57

Thank you Suzy. I have read parts of Dr. Bernstein’s book. Maybe I should get it back out. Take care!

(Kathleen) #58

Thank you for sharing Carolyn. I am impressed by your career change. I too felt like I was dragging but blamed it on age. The bloodwork for my yearly physical caught mine. Treated for type 2 because of my age, then the tests. I was diagnosed at 52 and I will be 62 in May. What a wild ride. I wear the 670G which has made life easier. Thank goodness for supportive spouses. Unfortunately when I gets the diagnosis, the family gets it too.

(Kathleen) #59

I guess I am use to the pump. But it all depends on what you are comfortable with to manage your diabetes. I got the 670G and for the first month was ready to call it quits. I was just sent a new and improved transmitter and so far so good. It will wake you at night. I can’t tell you how many times it low alarmed which I was grateful. I have hashimoto thyroid disease (caused by the diabetes) which covers the symptoms of a low. This pump alerts you sooner. Much appreciated!

(Linda) #60

Diagnosed at 39 (originally misdiagnosed as T2)! Officially T1D. I am 55, an athlete (marathoner), mom, young grandmother and all around luckiest girl in the world!