Anyone Else?

Feeling kind of alone. Anyone else dx’ed late in life, type 1, no misdx’ed for me, straight to ICU and DKA. I did this a 1 1/2 years ago at age 52. Anyone Else???

Well you have a note here and on juvenation.org. I met two people last month that were diagnosed as type 1 past in the last few years. Both were older than 55. I understand this is the fastest growing group newly diagnosed T1Ds.

The JDRF office in SF has started an outreach program and there are a few post 55 newly (last three years) diagnosed T1Ds. Maybe there is a JDRF outreach group down in So Cal.

You’d be surprised how many T1Ds who are older than you and have a lot of D experience. Could be a great exchange of info if they meet together. There option that JDRF may have is a Mentor program where you could cabitz with another >50 T1D.

I was diagnosed T1 at 53. Like you, DKA (BG 809) & right to ICU. No history of either type diabetes in my family. I thought I had the flu.

Me too, no one else in my family has type 1 and I come from a VERY large family. I didn’t know what was wrong, then a thought popped into my head. All it said was test your blood sugar. My Mom is type 2 (very overweight chair potato), I used her meter and got HI 600+, a couple of hours later I am in a bed in ICU. Quite a change and I thought all that was left was getting older.LOL

I was so out of it that I didn’t even know what was going on. If my husband hadn’t picked me up & driven like a madman to the ER, I’d have died. I barely remember what happened in ER & was told I passed out cold. Woke up hours later in ICU & thought this must be a helluva of a flu–LOL.

Been healthy my whole life & never got so much as cold.

Really, getting older is nothing compared to diabetes!

I walked in the hospital. I was only 672 LOL

Surprised you could walk at 672. I didn’t know what 809 meant until days later. I thought it was some medical code:)

How often did they test BG when you were hospitalized? They stuck me every 20 minutes around the clock for two days. I was halluncinating (really!) from sleep deprivation. I didn’t tell anyone because I was afraid I’d be put in the psych ward.

Read here of several people who were over 1,000. Can begin to imagine what that felt like & they must have been comatose.

I was dx’ed when 46. No family history. I was misdiagnosed as T2 for two weeks. I kinda self dx’ed after an optometrist noted a drastic change and mentioned something about diabetes. I was probably really high for a couple months. Had Thrush, skin infections, could barely function. Then I bought a meter and tested myself. It went off the scale - HI. I made an appt. with my GP and told him I thought I had diabetes. I didn’t understand the difference between T1 and T2, and he arranged an appt with a diabetes specialist, but never ordered a single test! I went for 2 weeks eating just 35 or 40 grams per day, feeling miserable and alone, and taking metformin. The specialist instantly got me on MDI. My first A1c was 14.7.

Getting it late in life has been pretty strange. I’m still getting used to people treating me different, especially my siblings. I participated in a JDRF fundraiser bike ride last year, and I felt almost out of place. The focus was very much on kids and families. Good organization though, and I’ll do it again some day.

Hang in there. I’m making my 50’s my best decade yet! Hope yours is good too!

Keith:

I don’t think you should feel kind of alone … ever. There is always someone around that can empathize with you if not know exactly what you are going through. All you have to do is reach out and “touch” someone (or SOS to someone). We’re here to support you and guide you. I was DX’d in my early 30’s. I’m 56 now. It’s a different kind of tough that early diagnosed people go through. But it’s tough all the same. I, myself, was misdiagnosed as a T2 at first and now am told that I fit more accurately into T1.5.

One good way to get it all off your chest is to do a blog on your site and let it all hang out. I guarantee you will feel better for it. I also guarantee that you will find someone out there that will be affected, inspired, spurned into action or otherwise emotionally touched.

Smile and keep on hanging in there.

Lois

Gerri:

When I had the DVTs, I was over 900. Conscious but not knowing I was so high.

Lois

The Dr.s and nurses said I was a minor miracle. The nurses called me sweetie. I don’t remember how many times they tested me, but I was only in ICU for about 12hrs… When they brought me my first shot of insulin, the injected me, then after that I gave myself all of the rest of the injections. I’ve only had one injection given by someone else, I’ve done all the rest since dx’ed in Aug./08. The only thing I knew when I went in was that over 150 wasn’t good LOL From what I have read most of the 1000 were children, to be young again.

I’ve read of a few who were misdx’ed, Manny Hernandez comes to mind, just because of age. Yea, most of the ones in my age range have been diabetic long time.

By alone I meant people dx’ed late may be more common, but I haven’t meet many on websites.
Hey Lois how’s the foot??? Better I hope.

The right foot (as in singular) is fine! The left foot still leaves a lot to be desired. The wound has shrunk but they created a little crater in it digging out bone chips!

Thanks.

Lois

I was diagnosed as T1 about six months ago after going for a month of excessive thirst and urination. I ended up in the ER for DKA with a BG of 447. I had barely eaten that day so I’m sure I had gone to 500-600+ throughout the month by drinking tons of Kool-Aid and soda lol… No one else in my family has T1 though there is a history of T2. I’m 24 so yes, younger than you but certainly not some little kid! You’re not alone! :smiley:

Keith, you are not alone. I was dx’ed 11 years ago w/T1-I was age 55. I spent 4 days in the hospital a couple in ICU. My
ketones were 400 and bs was 500. I had felt really lousy for about 3 weeks and had lost almost 20 lbs.When I did go home I
decided not to dwell on the how and why I had gotten this disease, but to just deal with getting used to my “new life”. I have
managed fairly well these past 11 years. With some help from my husband. My A1c is 6.3. I use Lantus and Humalog insulins. Of course, I watch my diet and
exercise ( probably not enough ), and have not gained any weight. I do get some highs and lows, but I don’t get hung up on them, I just treat them accordingly. I’ll be happy to answer any questions you have.

OMG, Lois. Amazing you were conscious.

You are a miracle, minor or not, Keith. I was in the hospital a while, but not as long as some people. I wasn’t allowed to eat or drink for two days (one nice nurse gave me ice chips after I begged). Thought they were trying to kill me through starvation & sleep deprivation.

I just went through one of those defensive conversations with a ‘friend’. She still doesn’t get it that at 57 I was diagnosed as a Type 1. She kept repeating that it was so rare, so strange, and I kept repeating back not really, people just weren’t diagnosed correctly back in the good old days.
I was a nurse so I bought ketostixs, saw large amt ketones, bought a meter and then went oh my god --my fasting BG was 357. Ran to the doc who put me on Metformin and tried to get me to go the hospital. I’m a nurse, I don’t need to go. So she called me all week-end to see how I was doing. Came back in Monday with BG 400-500 and she started me on Insulin. Took maybe 2 months before my CDE insisted they do the GAD, and C-peptide.
Anyway, I’ve found out that people are very ignorant about diabetes and we can spend a lot of time educating them. You are not alone, Keith, but I understand why you feel that way. Especially when everybody else is chowing down and I have to stop, check BG, inject insulin, count carbs, bla bla.

I’m another one of the misdiagnosed ones, Keith. I was 58 when I was diagnosed, no DKA, blood sugar 325 (not crazy high like some of you). I did ok on oral meds for a little over a year when my numbers started to climb and I diagnosed myself correctly as LADA/1.5. Now at 61 I explain the LADA to people who are really interested but most people I just tell Type 1 because that is what it’s most like. I have two friends in my age range with diabetes, both type 2. One is on oral meds and obvlivious to good control. The other is now on insulin after a decade or so and it’s interesting to see how we are the same but different in our management, me as a Type 1 and him as a now insulin dependent type 2 the same age.

There are more of us out there I think as diagnosis improves and their is more awareness that it’s not as simple as “Kid=Type 1”, “Adult or middle aged person Type 2”. We come in all shapes sizes and ages, you are definitely not alone!