Type 1 Diagnosed at a later age


(Andy) #61

We took a european vacation last summer and I gotta tell you, going thru airport security was the highlight of the trip.
Visited five countries and learned that there is no “standard” procedure for screening a diabetic.
In Italy, (Rome, I think) they made me stand on a riser and raise my shirt so they could look at my sensor, up close. One security guy kept pushing it, like it was a detonation device. I felt like the Pillsbury Doughboy.
In Spain, I was taken aside and patted down (and felt up!) We aren’t talking the standard American pat down (pat…pat…“NEXT”) either. After I got my extremely intimate and thorough pat down, I got visually inspected. They said something in Spanglish I didn’t understand and then pulled on my waistband and checked out my “goods”. Usually, someone needs to buy me dinner for that opportunity.
The Munich airport was less intrusive but equally confusing. I was passed thru with no problem but my Dexcom receiver was handed off to about four different security agents and we watched them play Hot Potato with it until they were satisfied it wasn’t harmful. The last agent tried to hand it off to someone else waiting in line until I intervened and tried to explain it belonged to me.

We are going to London this Wednesday. Getting thru LAX is easy. I’m hoping I won’t be strip searched at Heathrow but Ive been working out and going to the gym, just in case…


(Jess) #62

Hi Kathleen,

Thanks for your response. I also have Hashimotos, but my doctor only started calling it that AFTER I was diagnosed with diabetes. I was diagnosed with low thyroid at the age of 18, but looking back, I probably had it even at age 15 or 16, given my symptoms at the time. My endo never called it autoimmune thyroid disease until I was diagnosed with diabetes last year at 49. It doesn’t make a whole lot of sense to me… Interestingly, I sometimes feel the lows, and sometimes not. When the dexcom was waking me at night, 90% of the time my levels were fine, which I why I was getting frustrated with it. I do understand that for some people it is literally a lifesaver. Back to the diagnosis issue: I wonder how long I may have had diabetes before it was diagnosed. I have always been a runner and was exercising regularly from the time I was 13, and always ate well, so maybe I was “managing” it for a few years before it fully manifested, It actually came on full force when I stopped exercising and started to eat more like a normal person. I don’t think I caused it or could have prevent it, but it does make me wonder… Especially since I have had the thyroid disease for so long.

Jess


(Nancy) #63

Diagnosed at age 47. I am 66 now.


(Emily) #64

Diagnosed at 31. Honeymooned for 2 years, just taking basal insulin once a day. 3 months ago found out I was no longer making any insulin and had to start mealtime. It’s been a huge adjustment. Lots of low blood sugars. I now fully understand what a daily struggle this disease is. Have been battling a bit of depression over it. Finally ordered omnipod and dexcom. Hoping not having to prick myself with needles constantly throughout the day will make it more bearable. I used to say I was thankful for my diabetes because it forced me to focus on my health in a new way. But I’m struggling to find that positivity recently. Controlling it is draining both physically and mentally. But I gotta look on the bright side. I’m not dying and I’m not in pain. It must get easier with time. The beginning has been tough.


(Kathleen) #65

Thank you for sharing. You would think Doctors would understand. Do you have the Metronic 670G?


(Kathleen) #66

Wow…what an inspiration. When I was diagnosed, I was walking and working out 4 times a week. I was told to stop until I was stable. It’s been difficult getting the muscle tone back. Thank you for sharing!


(Patty) #67

No still have paradigm

Insurance 4 years is May 2019


(Kathleen) #68

Tears from laughter…you really need to write a book. I have not flown since diagnosed and your story is why. I guess you have to prepare to be “inspected.” Did you carry you insulin and supplies in your carry on? I was told by my doctor to get a doctor’s note and the sensor must be turned off. Can’t wait to hear about your next adventure. Maybe then, I will consider flying. For now…four on the floor.


(Andy) #69

I think doctors do their level-headed best to understand but really, unless they are a card carrying member of the club, they are flying blind alot of the time.

My endocrinologist (great guy) tries his best to give advice and even went so far as to hook himself up to a Dexcom CGM to see how it works.
Me: “So what did you think of the CGM?”
DR: “seems pretty easy. Lots of good information to help manage your diabetes!”
“uhm…How many times did it wake you up at night?”
“none”
“did it start beeping in the middle of surgery?”
“no”
“did you EVER get any readings that weren’t between 70-120”
“YES… it was interesting to see how food affected my blood sugar. I was at 136
for a little while, once.”

  1. Once.
    I’m glad he found it interesting.

(Andy) #70

All my life, I’ve wanted to be able to pull off the “bad boy” persona. Kinda hard to do since I don’t own a Harley and I consider plaid a color.

Until I got T1D.

the best part of airport security is the stares from other people in line.

“pssst…honey, look! That guy over there is getting a cavity search. He must be bad ass! They are really digging thru his bag! Whatcha think? Drugs? Weapons?”

That’s me. Billy Bad ass.


(Dassy) #71

Hi Kathleen,
So glad to see your post. I’m always looking in here to see adults who are diagnosed later in life. I’m 55 years old I was diagnosed six months ago a few months after I retired from teaching. I’ve had how she Moto since I’m a teenager but my A1 C test have always been good. I started getting blurry vision waking up four times a night to so glad to see your post. I’m always looking in here to see adults who are diagnosed later in life. I’m 55 years old I was diagnosed six months ago a few months after I retired from teaching. I’ve had Hashimoto’s since I’m a teenager but my A1 C test have always been good. I started getting blurry vision, waking up four times a night to Urinate, leg cramps, and extreme thirst. My BG was 517 when I went to the doctor. I guess I’m still in the honeymoon. Sometimes I have an entire week that’s great and then days like yesterday where I woke up had the same cup of coffee I have every day but my BG went up to 240. It’s a roller coaster. The main reason I’m writing to you is because I see what you’ve all been writing about flying. My plan was to travel when I retired and this diagnosis Changed those plans. So I haven’t been overseas since I got this but I’ve actually traveled from New York to Houston, Atlanta, Michigan, and Florida. Three of those trips happened After getting the Dexcom G6 CGM. I did some research and spoke to my doctor and found out that you could go through the regular x-ray but not the one where you hold your arms up in the air. I’ve never shut mine off and I did not ring going through. I’ve never been patted down and TSA has not stopped me from bringing my needles and supplies with me. I hope this helps anyone who’s afraid to travel. Don’t get me wrong I spend a lot of time scared but I’m trying not to let it stop me! Oh, I’m not gonna pump so maybe that’s why other people are having issues!


(Dassy) #72

Lol, Just saw how my voice record spelled Hashimoto’s (how she Moto’s)


(Kathleen) #73

Thank you! Maybe air travel is different since I wear the Metronic 670G which is the pump and the CGM close loop system. I will read my manual again, but I am pretty sure there are flying limitations. Andy didn’t seem to have problems traveling within the US, which was welcome news. I do have a friend whose grand-daughter was searched and questioned when they flew from BWI to Orlando. My husband and my 40th wedding anniversary this year and we were considering a trip to Key West. Again thank you!


(Kathleen) #74

Laughing…I knew what you meant!


(nscole@earthlink.net) #75

Boy oh boy, there are so many stories, but so many of them are similar. I was diagnosed with T1 at the age of 56. That was 6 years ago. I have been a personal trainer and a nutritionist for over 30 years and I was gobsmacked by the diagnosis of diabetes. How many diabetics had I worked with over the years? Dozens! Some type 2s and some type 1s. I never considered myself to be a candidate for either one, but weird things started happening. I had to get up 5-6 times every night to urinate. I got to the point where I wouldn’t drink anything after 8pm, but it didn’t help. I was tired all the time. I was losing muscle strength. I had headaches a lot. I was grumpy. I contributed all of these things to lack of sleep. I kept thinking that if I could only sleep for 6 hours straight, all the other problems would disappear. I also discovered that I couldn’t handle alcohol at all. Two glasses of wine had me falling down drunk. Although I was already on the slim side, I started losing weight. One to two pounds a day! After a loss of 18 pounds, I made an appointment to see my doctor. The office called a few days later and said it was imperative that I come in that day to get the test results, I was scared. My husband went with me and when we got there, the PA patted me on the shoulder and said everything was going to be alright. That really sent me into a panic. So long story short, they said it was Type 1 diabetes and I was put on Lantus - 27 units a night and given a referral to an endocrinologist. I took the prescribed dosage that night and awoke with severe leg cramps around 2 in the morning. The cramping spread to my arms. By 7am, I was vomiting, my arms and legs were so cramped I couldn’t straighten them. I couldn’t talk or focus on anything. My husband managed to do a finger stick and my BG was 8. He picked me up, put me in the backseat of the car and drove me to an ER. I should add a dramatic note here - my husband was supposed to fly out to a trade show the previous afternoon, but got someone to cover for him and he changed his flight to later on day 2 of diabetes. I firmly believe that if he hadn’t been home, I would have died. The ER doctor asked why I had taken so much insulin and my husband said that was the prescribed dosage. I spent a day in the hospital and then was able to get into see an endocrinologist the next day and started on the path that y’all know so well. I started using the Dexcom system a few months after my diagnosis, but was hesitant to start on a pump for a couple of reasons. I wanted to be able to manage the disease on my own and my insurance wouldn’t pay for a wireless pump. Since I had a physical job and I had worked with Type 1 diabetics using pumps, the tubes were always in the way.
Last year, I was finally approved to start using the Omnipod by my insurance. I now have that and the Dexcom 6 and life is easier and not so stressful. I am envious of those of you who have low A1C, as I can’t seem to get mine below 6.3 no matter how hard I try. My doctor is okay with this number, but I think I can do better. I retired early at the end of last year because the life of a personal trainer was too hard with Type 1. I needed to be at work by 6am (which meant getting up at 4:30) and three days a week, I worked until 8 at night. My eating time was erratic because personal trainers work the hours that other people have off. I feel much better now that I am not working. I still exercise daily; often several times a day to reduce BG levels rather than taking more insulin.
I want to say one more thing and then I’ll shut up. I am an avid SCUBA diver and take a couple of trips a year to go diving. I quit being a cyborg on these trips, as the devices don’t work underwater. My doctor has to provide a written note to the dive operations as to my health and most places I have been to have been great and given my special attention. I also am very careful. If I don’t feel well or my sugars aren’t right, I skip diving for the day which breaks my heart, but better to be safe than sorry.
I wouldn’t wish this disease on my worst enemy, but here we all are, each battling in our own way and getting along pretty well. Good luck to all of you.


(Steven) #76

Regarding the post above from Andy (aka Billy Bad Ass) and his Endocrinologist trying a CGM:

I’m starting to think that we all should ask our Endo if they have tried using a CGM. But I would suggest that;

  1. They have to wear it for the full 10 days.
  2. They set the alarms so that they WILL go off (maybe the low alarm at 85 and the high alarm at 105).
  3. They have to DO something to get their sugar back in range (e.g. walk stairs or jog in place if it’s “high”, get up and have some O.J. if it’s “low”).
  4. They can’t cheat and turn the alarms off at night.

Maybe then some of them will appreciate what we go through a bit more. Just a thought. I’m going to do it at my next appt.


(Andy) #77

Screw Diabetes. Go to Key West!


(Lisa) #78

I was diagnosed type 1 @ 53!


(Kim) #79

@wittersk Hi Kathleen. I’m 39 and was diagnosed this year. Like many, I spent about 3 months trying to please the doctor as a type 2 before I asked for the GAD. Like @AJZimmerman, I had lost a ton of weight and everything seemed to come crashing down following a surgery. I didn’t read all 77 comments but I hope you found some solace in the replies. I also hope that this one finds you feeling well and in a hopeful place. This ride has been scary, infuriating, confusing and emotionally taxing on me and everyone I love—I’m sure you’ve experienced a few yourself. There’s one thing I know, this adult community has an amazing ability to teach, inspire and lift each other up. Be well. So glad you found us.


(Andy) #80

Do you wanna know what I think? (my kids always groan loudly and vaporize when I ask them that question) but you guys are a captive audience and I can’t hear you, anyway…

I think the reason I keep coming back to this forum is because of the optimism.

Ive been reading all of these “how I became T1D” stories and have noticed a common theme. That theme is optimism. I kinda chuckle to myself actually reading about all the self explanations we all came up with when we were first transitioning.
“I figured I was just thirsty”
“Ive always been a big water drinker”
“Im getting a bit older, of course my eye sight isn’t 20/20”
“I just need to workout out harder…get my energy level back”
“I was working longer hours, of course I was tired”

I’m not making light of anyone or their personal journey into diabetes because I too, explained away each and every symptom I had. Even when I googled all my symptoms and all I saw was 18000 pages of “YOU HAVE DIABETES” as a search result, I still explained away all my symptoms as something else. Something I could fix.

Kudos to all of us for being so optimistic!!! As anyone over the age of 40 or so can tell you, there is no limit to the amount of pessimism (sp?) that can spew out of the mouths of our peers. I guess it comes with age, for some folks.

As for me… Later today my wife, my diabetes, and I are going to London. We will be gone for five days. I’ve completely overpacked my diabetic supplies (Four CGM sensors should be enuf) just in case I lose the first one, or the second one, or the third one. I’ve packed enuf extra insulin to supply an entire third world village for months, and radar will be able to track my suitcase all across the Atlantic, from the mountain of pen needles I have stowed away.

Have a good week, everyone!