Diagnosed at 39


(Kim) #1

I was recently diagnosed this past May with type 2 after being borderline for 8 years (post pregnancy). Out of nowhere, my A1c was 11.1 and FBS was 276. Yikes. After 2 months of 2000mg daily of Met and a very strict diet (basically no carbs at all) and exercise my numbers went down to 6.7 and 110 average everyday. BUT I couldn’t tolerate any carbs, even the “good” ones without a spike. I brought this to my GP’s attention, she ran the GAD65 and the rest is history. No insulin production, type 1. It’s been about 11 days since I found out and I’m waiting to see the endo next week. I guess my question is, can I look forward to some quality of life as far as diet goes (like fruit and cereal, my God I miss cereal)? Or am I telling myself this to cope with the idea of insulin and all it’s issues, for the rest of my life? The months on Metformin were misery. I’m basically starving right now (down 20+ lbs and I wasn’t overweight) to keep my numbers low until I can get intervention. Any advice is welcomed.


(Samantha) #2

This was me in January. Diagnosed at 48 years old. I was being treated for type 2 for over 2 years and on metformin which made be nauseous. Nothing seemed to work. I even completed a marathon a few months prior! Like you, as time went on I couldn’t tolerate any carbs and lost 20 lbs I couldn’t afford to lose. Fast forward. I started injections which really, truly aren’t bad given that I can eat carbs again! Insulin was liberating. I ate Cheerios for breakfast the first 4 months! Really it’s the finger pricks I dislike more than anything but I am VERY happy to say I have been wearing a Dexcom G6 CGM for 24 whole hours! Liberation 2.0! Check out type one run (podcasts & groups). It saved me in the beginning because I thought doc would tell me to stop running. But find support groups that suit YOU. Best of luck to you. We can do this!


(Kim) #3

Thank you so much for giving me some hope. I’ve been praying that the insulin would be liberating from this starvation nightmare. And it gives me even greater hope that I’ll be able to physically do all the activities that I enjoy. Thanks for your response, Samantha!


(Andy) #4

Same story. At age 53, I was told I was Type 2 in October of 2016. I never really believed the diagnosis because I was not in any of the “at risk” categories. I went on Metformin. Then lost an additional 35 pounds until I was in full DKA before anyone mentioned a GAD test to me. Kept getting told by my MD that I was Type 2 and it was just a matter of finding the right dosage. I changed doctors in April of 2017 First thing the new MD did was run a GAD test. Had my answer in a couple of days. Type 1 the entire time.
You’ll feel much better once you get some insulin into your system for a bit. And youll get your 20 pounds back and start feeling normal.
I have found the hardest part to come to terms with is how I am perceived by other folks my age. I’m still the same person. I have come to realize that my generation and generations before me were fed too many old school myths and stories about Type 1 diabetes and those afflicted. A good friend of mine actually told me I needed to tell my barber I was diabetic. Not sure why. I guess maybe diabetic hair is different? LOL


(Kim) #5

I know just what you mean about the barber! I was getting a manicure and thought, “do I need to tell her to be careful?” LOL What is very curious to me is that it seems that latent onset was rare at one time yet I’m hearing and seeing so many with similar experiences. Thank you for reaching out.


(Dennis J. Dacey, PwD) #6

It may not be that more adults are getting TypeOne diabetes now than in years past, but rather that more people are receiving accurate diagnosis - but as all you are pointing out, your correct T1 diagnosis was “second guess”.
It is a fact, according to JDRF that more than 50% people newly diagnosed with T1D are diagnosed as adults.


(Andy) #7

I read somewhere that adult onset T1 may have its origins due to a virus at some point in my life. Then the study pointed directly to having a medical history that includes mumps during puberty.

I had mumps at 12 or 13. Good case of them, too, from what I remember…


(sneathbupp) #8

I was “lucky” since I was in DKA at diagnosis, so didn’t spend anytime misdiagnosed as a T2. I still deal with docs (opthamologist etc) who think adults don’t get it and I must have not known my whole life. Whatever, I get tired of trying to explain.


(Andy) #9

oh yeah… I was sent to Type 2 counseling sessions that included me and about 35 overweight, non active older population adults. I was 6 ft, 135 pounds (a walking skeleton) and being given an action plan on how to lose 20 pounds to control my T2 diabetes. Even the nurses running the class couldnt understand why I was there. “MD’s orders” was my answer.

It got worse once I was correctly diagnosed as Type 1. I was sent to a support group that consisted of me (at 54) and about 20 junior high kids. Learned alot about “Keeping up with the Kardashians” and who was wearing what to the prom but not alot of support among people my own age. I lasted one session. I think I was making the parents in the room a little nervous. LOL


(Kim) #10

Very interesting! I read something similar as it relates to stress/trauma. My decline from pre-d to t1 came on the heels of a pretty traumatic shoulder repair. I guess the good thing is that research is leaving no stone unturned to find a cause and solution.


(Andy) #11

Cutabove1- What are some of the symptons your having right now?

before I got some insulin, I was down 45+ pounds, blurry vision occurences (like looking thru a waterfall), had what I can only describe as a buzzing feeling all the time. Like fireworks reflecting off a still lake, but inside my body. I started forgetting random words (like “coffee”) and got really really really overly emotional. Im not a cryer by any stretch of the imagination but I was crying about everything and in front of just about everyone. I drank so much orange juice in those six months prior to diagnosis that, to this day, I still cant stomach the smell of OJ.

All that goes away really really quickly after you start insulin. Truth be told, I look at insulin differently now. I consider it my lifeline to sanity, especially since I’ve been on the other side.


(Kim) #12

Well, if you ask my wife she’ll tell you that my patience could fit in a thimble and like you experienced, I tend to get emotional now and not usually at all a crier. I have ZERO focus. I will be in the middle of a conversation and have to ask the person to repeat what they literally JUST said. My 20/20 vision is a thing of the past. I wear my reading glasses pretty much all the time. I find myself just way more dark and terse inside my head and it’s the complete opposite of my personality. In fact, my wife was the one that first noticed I wasn’t myself and said something was wrong. I’m down 23lbs as of today and that’s tough to watch. Ten pounds felt like a little bonus vanity gift. Now people are asking if I’m sick. I finally see an endo on Tuesday. More than anything, I just want to have the peace of mind that I won’t be taxing my body anymore trying to live without insulin. I’m counting the minutes to intervention.


(Andy) #13

I gotta admit…one the morning of my first endo appt. I was like a little kid waiting to go to Disneyland. Dressed early, up and out the door early, chomping at the bit. I even waited for the prescriptions to be filled (of which there were a lot). They said to come back in an hour or so, but I planted myself in a chair.
I chose to go the pen route for insulin. Just seemed easier and more convenient.
The one downside is finding the right amount to inject, but that all depends on your body and how it reacts. They will probably start you on the lower side and you can work your way up. Bigger picture tho is that ANY insulin is better than none.
Not sure how you feel about needles but don’t be worried. Honestly, you don’t even feel them. I was picturing something the size of a turkey baster and I HATE NEEDLES. Took me five hours to do my first injection (stayed busy tho…walked the dog twice, cleaned the house, folded the laundry, dusted the lightbulbs…you get the picture…) but then, when I actually did it, I had to make sure I had actually done it because I didn’t feel a thing.
Oh, and cant speak for everyone starting an insulin routine, but I hope you have some of the results I had.
Especially in regards to your vision. For about three weeks after starting insulin, my vision cleared to a point I didn’t need my glasses for anything. Actually forgot where I had left them. IT WAS AMAZING! After 45 years of looking for my glasses every morning, I didn’t need them for squat.
Sadly, once my body adapted to insulin, my crappy original eyes came back. but enjoy it while it lasts!


(Kim) #14

Andrew, thank you for this breath of fresh air and my current sigh of relief! I’m an extremely laid back person and this situation has really put me into the body of a character I don’t easily relate to—nervous, scared, short, irritable. I have to say, I’m also feeling pretty excited for the endo. Thanks for your input on the pen. Ironically, one of my clients is Novo! Knowing the full range of their products and others is actually overwhelming lol Also good to hear about the injections. The worse thing so far has been the finger sticks. I work with my hands and boy can they get sore. Trying to find the upside in this and every time I come to the same conclusion—that this is not the worst outcome, I’m blessed in so many other ways and I truly am not alone.


(Dennis J. Dacey, PwD) #15

Andrew @AJZimmerman, for many years - more than 50 ago I heard this in the medical lecture hall - autoimmune diabetes was said to be the result of virus or trauma. This was in the teachings of Dr. Elliott Joslin who opened his diabetes treatment and research clinic in 1911 - long before the “discovery” of insulin.


(Andy) #16

Glad I can help. It really isn’t all that bad. Of course, a lot of diabetic people have told me Im still in my honeymoon phase and eventually I’ll grow tired of the upkeep. That may be the case (I’ve got about 30 years to find out) but whenever I start feeling overwhelmed, I just pull up a few selfies I took during my DKA. That always brings me back to my senses.
That, and I’m a dad, first and foremost. Dads (and Moms) aren’t allowed to get downtrodden for very long. Looking back, this whole transition has been harder on the family than it was on me.

I had to buy one of those medic alert necklaces (the kind that sez “pick me last” for basketball at the gym) and my wife and kids all demanded that I engrave all of their phone numbers on it. I hardly had room for anything else. Just a bunch of phone numbers. But Im thankful I have them around. Just need to get them to calm down a bit. LOL.


(Steven) #17

Just joined this forum. I was misdiagnosed 10 years ago, skinny, white, no family history. I am a PHYSICIAN! Something was off! Finally self-diagnosed with LADA (now completely on insulin). It’s workable. Test often. Try to limit carbs, etc…
On occasion (like recently), I get in a funk, knowing that Type 1 diabetes is a full time job. Don’t like it. Don’t want it. I remember what it was like when I didn’t have it…
But WE can manage it. Nice to know that you all get it! Sorry it has to be this way. You will NEVER get it perfect. Every day is different. Just remind yourself that you are doing your best! And continue, doing your best!
You get used to the finger sticks, you get used to the Pens. What’s hardest (IMHO) is all the planning ahead. You will get overwhelmed. But you aren’t alone. Peace.


(Andy) #18

My funk? Having to carry a purse. (I don’t care what you wanna call it; a satchel, a purse, a murse, a manpurse…make no difference to me). I was always a wallet and keys kinda guy.
My wife just laughs at me. All those years of me getting annoyed because she had to rummage thru her purse for something. Now it’s my turn. “Payback’s a bitch!” she sez


(Steven) #19

Haha. I have a Spiderman lunchbox! Everybody thinks it’s “ironic”. I’m 58 freakin’ years old! It holds my meter, my insulin and my snacks. I don’t go anywhere without it. It’s not “irony”, it’s my lifeline. It gives me a sense of “control”. (If you find a stylish “murse”, let me know. I will be in NYC soon.


(Steven) #20

Sorry for all the quotation marks. SW