Diagnosed with T1 after adult hood?

[mmissanne]

Is there anyone who was diagnosed with type 1 diabetes after they became of adult age? It seems that most people in my neck of the woods (NC) has never heard of it including some physicians. I am 46 and recently diagnosed. If you you fit this profile please share you story with me and how you were diagnosed. :dontknow: Thanks!

[gettingby]

Hi and Welcome. I am from NC too and my endo has a couple of patients who were diagnosed T1 in their 40's (I believe). I was diagnosed in my teens but I did want to welcome you.:)

[AngelKitty]

Howdy there Miss Anne,
I was diagnosed Type 1 at the age of 36.
My husband took me to the ER where I was immediately treated and admitted and then diagnosed.
When I went to see my local Dr (who has been my local Dr for 20 years) he couldn't believe the test results from the hospital - he kept saying that the hospital had made a mistake because "I was too old" to have type 1 (mainly associated with juvenile onset diabetes). Even though he had a copy of the lab results in front of him he wouldn't believe it - which then made me feel that the hospital had somehow got it wrong? So, like an idiot, I call the hospital and question the results and after a lengthy discussion with one of the staff in the Diabetes Dept they decided to call my Dr and set him straight.
Needless to say, this denial from my doctor made my own denial about being a type 1 diabetic harder to deal with (and longer).
You can develop type 1 diabetes at any age, it does not discriminate - my nephew was diagnosed at age 6, I was diagnosed at age 36 - by comparison I feel lucky that I got more mileage out of my pancreas than he did - this disease is like a ticking time bob - the difference is we all have different lengths of fuse! ;)

[mmissanne]

Hi and Welcome. I am from NC too and my endo has a couple of patients who were diagnosed T1 in their 40's (I believe). I was diagnosed in my teens but I did want to welcome you.:)

Thank you for your kind and warming welcome! :)

[mmissanne]

Howdy there Miss Anne,
I was diagnosed Type 1 at the age of 36.
My husband took me to the ER where I was immediately treated and admitted and then diagnosed.
When I went to see my local Dr (who has been my local Dr for 20 years) he couldn't believe the test results from the hospital - he kept saying that the hospital had made a mistake because "I was too old" to have type 1 (mainly associated with juvenile onset diabetes). Even though he had a copy of the lab results in front of him he wouldn't believe it - which then made me feel that the hospital had somehow got it wrong? So, like an idiot, I call the hospital and question the results and after a lengthy discussion with one of the staff in the Diabetes Dept they decided to call my Dr and set him straight.
Needless to say, this denial from my doctor made my own denial about being a type 1 diabetic harder to deal with (and longer).
You can develop type 1 diabetes at any age, it does not discriminate - my nephew was diagnosed at age 6, I was diagnosed at age 36 - by comparison I feel lucky that I got more mileage out of my pancreas than he did - this disease is like a ticking time bob - the difference is we all have different lengths of fuse! ;)

Hi Ms Kitty,
I hope all is well with you. Thank you so much for your reply. I really needed to hear your story because it is the exact same thing that I am dealing with. My primary care physician is in fact sending me to another endo because he does not believe the results and like you I had the results with me to show and confirm what I was told by my endocrinologist. I don't think I am going to be re-tested because It would be like starting all over again. Once I was diagnosed I was able to move forward and fight this disease; if I second guess; it will set me back.

It has been a long journey though I was only diagnosed in Jan 2009. I am finally managing my highs and lows as of three week consecutively. Thank God! It has been horrible and frustrating. I know I have a long journey ahead but I'm thriving to manage the illness and not the illness manage me.

What is your insulin regimen?

[DCaplinger]

I was 34 when I was diagnosed. The anti-bodies that were present indicate I am a Type 1 and not a classic LADA, however my official diagnosis from my Endo is still Type 1 (LADA).

I know a few LADA's that were diagnosed in their early 50's.

Regards,

D

[kt89]

i was just diagnosed and im 19. my doctor said its usually primary school age when kids are diagnosed. does that mean being diagnosed from between my age and middle age is uncommon?

[mmissanne]

I was 34 when I was diagnosed. The anti-bodies that were present indicate I am a Type 1 and not a classic LADA, however my official diagnosis from my Endo is still Type 1 (LADA).

I know a few LADA's that were diagnosed in their early 50's.

Regards,

D

Thank you for your reply and support. Now I don't feel alone :( . By the way; what does LADA stand for?

[AngelKitty]

It has been horrible and frustrating. I know I have a long journey ahead but I'm thriving to manage the illness and not the illness manage me.

What is your insulin regimen?


Being newly diagnosed is scary, overwhelming and life changing - and having your trusted doctor throw a spanner in the works is just not needed!

I am really impressed with your positive attitude in getting on top of things and taking charge of your diabetes - good work! :thumbsup:

I started off on MDI (multiple daily injections) but have recently gone on an insulin pump to help me deal with other medical problems.

What is your daily insulin regimen - and are you counting carbs to help you work out your bolus doses?

[poodlebone]

i was just diagnosed and im 19. my doctor said its usually primary school age when kids are diagnosed. does that mean being diagnosed from between my age and middle age is uncommon?

I was also 19 when I was diagnosed. I didn't know a thing about diabetes at the time so I didn't think anything about my age. Later on I thought that I must have been older than most people (kids) upon diagnosis but years later I've discovered that Type 1 can strike at any age.

[mmissanne]

Being newly diagnosed is scary, overwhelming and life changing - and having your trusted doctor throw a spanner in the works is just not needed!

I am really impressed with your positive attitude in getting on top of things and taking charge of your diabetes - good work! :thumbsup:

I started off on MDI (multiple daily injections) but have recently gone on an insulin pump to help me deal with other medical problems.

What is your daily insulin regimen - and are you counting carbs to help you work out your bolus doses?

My regimen is 24 of Lantus at night and Yes! I am counting carbs per meals for my bolus of Humalog. It has been a task learning the glycemic index and carb counting but I think I've finally got it. No highs and lows for the last three weeks. Praise the Lord! Thank you for your support:adore:

[zoelula]

I was diagnosed Type 2 at age 58 but believe I was misdiagnosed and I am in fact LADA (Latent Autoimmune Diabetes in Adults)-Type 1.5.

DCaplinger what do you mean when you say the antibodies present indicate you are Type 1 and not 1.5?

[mortis505]

Hello and welcome to DF! I was diagnosed at 35 with T1/1.5. Im not sure if any tests were done but at the time I had dropped 40+ pounds in 5 weeks and my BG at DX was 573 with an A1C of 14+. Im currently on a pump using Novolog with a TDD of approx 21u.

[TommyC1]

I was DXed 14 years ago at 36 years old. I went to the Dr after dropping from 190 lbs to 130 lbs.
Since my BS was 700+ when I saw the Dr and I showed no sign of DKA he assumed T2 and tried Glucophage. When that had no effect he decided I was T1 and put me on NPH insulin.
After three Drs and 13 years of poor control and repeated severe hypos I went in to Joslin in Boston where they put me on MDI Lantus and Novalog and taught me carb counting and corrections.
At roughly the same time, looking for some way to comunicate with other diabetics, I found this forum and learned a whole lot more. Not only that but I finally found a "place" where folks get it. Man I was tired of talking to non diabetics.

Welcome aboard,
Tommy

[Olidus]

I got the DX of Type 2 weeks before I turned 30. All the classic signs. I don't think the attack of our pancreas discriminates on age, its an auto immune disorder and it happens when it happens, no matter how old we are.

[lorilei]

wrongly diagnosed as gestational diabetes...tested positive for antibodies and low cpeptide...in my thirties..

[zoelula]

I got the DX of Type 2 weeks before I turned 30. All the classic signs. I don't think the attack of our pancreas discriminates on age, its an auto immune disorder and it happens when it happens, no matter how old we are.

Type 1 Diabetes is an autoimmune disorder but Type 2 is not. That's why the presence of the antibodies can be used to identify type 1 or 1.5.

[kgm0612]

I was 40 when I was dx'd a Type 1 after a C-peptide confirmed that I was producing little to no insulin at all. My younger brother was dx'd at the age of 21 and I started having symptoms in my late 30's, but believe it or not, I didn't realize they were diabetes related because I wasn't thirsty & peeing all the time.

Karen

[mmissanne]

I was DXed 14 years ago at 36 years old. I went to the Dr after dropping from 190 lbs to 130 lbs.
Since my BS was 700+ when I saw the Dr and I showed no sign of DKA he assumed T2 and tried Glucophage. When that had no effect he decided I was T1 and put me on NPH insulin.
After three Drs and 13 years of poor control and repeated severe hypos I went in to Joslin in Boston where they put me on MDI Lantus and Novalog and taught me carb counting and corrections.
At roughly the same time, looking for some way to comunicate with other diabetics, I found this forum and learned a whole lot more. Not only that but I finally found a "place" where folks get it. Man I was tired of talking to non diabetics.

Welcome aboard,
Tommy

mmissanne> Tommy, I can totally relate when you mentioned finding the right people to communicate with. This forum is a blessing to me.
I can't believe that the medical industry in so lacking in facts and info about this disease. No two doctors or diabetic educators the are on the same page. All advice given seems to be conflicting. It is very frustrating. I have learned more by research and other diabetics than from my own doctors.
Hang in there!

[jenb]

Hi and welcome. As you can see from all the responses, you're not alone! I was dx'd T1 when I was 53. Had no history of diabetes in my family.

There's a lot to learn, but it is totally managable. Good luck!

Jen

[It Ain't Over]

I was DXed 14 years ago at 36 years old. I went to the Dr after dropping from 190 lbs to 130 lbs.
Since my BS was 700+ when I saw the Dr and I showed no sign of DKA he assumed T2 and tried Glucophage. When that had no effect he decided I was T1 and put me on NPH insulin.
After three Drs and 13 years of poor control and repeated severe hypos I went in to Joslin in Boston where they put me on MDI Lantus and Novalog and taught me carb counting and corrections.
At roughly the same time, looking for some way to comunicate with other diabetics, I found this forum and learned a whole lot more. Not only that but I finally found a "place" where folks get it. Man I was tired of talking to non diabetics.

Welcome aboard,
Tommy

That is about what has happened to most of us diagnosed around here. The general practice MD's just don't get it. Many of the Internists and even a few Endos are not well trained with diabetes either.
I was dx'd at age 24. That was before BG meters and MDI were ever heard of. Spent a lot of years stumbling along in the dark. I shutter to think of what I did to my body during those early years.

[notme]

Hospitalized two years after my fifth child with type one diabetes at the age of 32. Lost thirty pounds in a month and had a blood sugar of over 1200.

Lots of us late bloomers out there.

[sugardumplin]

had a c-peptide and a GAD test. was originally diagnosed as a type 2. no response to oral tablets. was on insulin shortly after being diagnosed. the DF forum deemed me 1.5. my endo says it doesnt matter what type i am. the treatment is the same. a little of a year later and i am pumping insulin yay! :D

[Olidus]

Type 1 Diabetes is an autoimmune disorder but Type 2 is not. That's why the presence of the antibodies can be used to identify type 1 or 1.5.

I'm sorry - I just assumed that we were talking about Type 1 since this thread is posted in the Type 1 Diabetes section on the forums.

[Delphinus]

Is there anyone who was diagnosed with type 1 diabetes after they became of adult age? It seems that most people in my neck of the woods (NC) has never heard of it including some physicians. I am 46 and recently diagnosed. If you you fit this profile please share you story with me and how you were diagnosed. :dontknow: Thanks!

Diagnosed at the age of 38.

Health care professionals educated before say the mid 90's, need to take some refreshers, do more journal reading, more networking, and go to more medical seminars. I am really starting to believe that.

A lot of doctors still believe diabetics can't achieve and then maintain good BG control. Therefore we are ALL gonna suffer short, complication riddles lives. My dad still thinks like this too, old school. He is type 1... And doesn't know the diff between basal and bolus.

It's not only within reach, but it is VERY realistic. The resources/information are there for anyone who cares to live a long life free of complications, or very little and less severe complications.

Remember when you were a kid, and you wanted that box of tasty cereal, but you were a tad too short, and your fingers kept pushing it back until you couldn't see it?

Well it's the same thing now, regarding good BG control, cept now we(diabetics) have a little stool on the floor to hop onto, just to bridge the gap, but the rest of how the journey goes is determined by how much we want it.

The stool only allows us to get it, you now have to open the box, and pour it.

Good luck, and ask many questions.

[candiwv]

Here is how I was diagnosed as a Type 1.

First of all, my husband came home and found me passed out on the bathroom floor. (Thank god my 2 yr old was at a birthday party). They got me to the er where they determined I was in DKA. This was in Feb. at the age of 35. I did not come out of the coma for 3 days. The dr's in the hospital were still unsure if I was a Type 1 or 2 but sent me to a NP who was a CDE, she did the antibodies test and determined I was type 1. I have been on insulin since leaving the hospital so it did not really matter either way. BTW, my bs was 888 and the A1c was 17.3.

[Lizzie G]

i was diagnosed with type 1 aged 31

[Southcoast June]

I also was rushed to the ER in DKA. Type I. I was 54. Had had a history of hypOglycemia for nearly 10 years, and was told that I was a candidate for Type II. The dx came as a surprise to me, really. However, drs. in my city could not properly treat me and disagreed on I or II, so I went to Joslin Diabetes Center in Boston where I finally got proper treatment and never looked back.

Drs. are finally realizing that Type I can come on at any age and for any reason. I'm glad I insisted on the correct dx.

[Ategeler]

Welcome to the forum! Yes I was misdiagnosed as Gestational Diabetic with first child. During the 2nd pregnancy they did GAD65 antibody check and I tested positive. So I am now reclassifed Type 1.5 LADA (Latent Autoimmune Diabetes in Adults). I am 37. Similarly, my father was diagnosed in his late 20's and at the time they classified him as developing later than most juveniles as well.

[e||ement]

i was diagnosed Type 1 at age 34

[DCaplinger]

DCaplinger what do you mean when you say the antibodies present indicate you are Type 1 and not 1.5?


The "classic" LADA patient is positive for mainly GAD65 antibodies. That is not to say that they cannot be positive to any others, however, which is why my diagnosis is still listed as LADA due to the age I was at diagnosis.

I was positive for 3 different antibodies, including GAD, IAA and ICA.

Regards,

D

[zoelula]

The "classic" LADA patient is positive for mainly GAD65 antibodies. That is not to say that they cannot be positive to any others, however, which is why my diagnosis is still listed as LADA due to the age I was at diagnosis.

I was positive for 3 different antibodies, including GAD, IAA and ICA.

Regards,

D

OIC; I was confused because I thought you were saying you were Type 1, not 1.5. I really wish I could have antibody testing!

[mazea]

I was diagnosed with type 1 when I was 30 last year. I had lost a lot of weight (was underweight) and was waking up 5 times a night to go to the bathroom. I actually put myself in for the test and the doctor was disrespectful of me and shook his head but reluctantly agreed to do the test. I think he thought I was too young to have type 2 and wasn't aware type 1 could be diagnosed in adults. The test came back that my blood sugar level fasting test was 18mmol. The doctor said It looks like I have diabetes, explained nothing, gave me some metamorphin and diamicron prescriptions and gave me an appointment with a specialist that he new would take at least 3 months to get into.
I had a bad feeling about waiting for 3 months and went to get a second doctors opinion. The second doctor put me in emergency at hospital right away. My blood sugar levels dropped at the hospital while being treated with insulin drip. The doctors put me on metamorphin and diamicron type 2 medication. My blood sugars went up again during the treatment and 3 days later they changed me onto an insulin regime. My C Peptide was tested 5 months later and it was very low. My antibodies were negative. On diagnosis, I had slight kidney damage and developed inflammatory neuropathy which stopped me walking for 4 months. My dad also had type 1 and he was diagnosed at 21. My current endo wants to do another antibody test next year. I've had a few doctors since think I have type 2 just because of the fact I am 30 and for no other reason. Sometimes it is very difficult to get diagnosed properly when you are 30.

[zoelula]

Sometimes it is very difficult to get diagnosed properly when you are 30.
__________________
When you're 58 it's virtually guarenteed you will be MIS-diagnosed! My blood sugar was exactly the same as yours, Mazea (325), the only difference was I apparently had more insulin production (nobody checked) because I maintained on oral meds for a year, before my numbers started creeping up. When I couldn't get stable on insulin I started looking for reasons and realized I'm LADA. Nobody has diagnosed me as that; nobody besides me. It's so frustrating when doctors think in black and white and so many people with diabetes live in the grey zone.

[Injecto]

T1 Dxd at 31. No family history. Dropped 25 lbs and dying of thirst, got worried, went to Dr, tested me, and it all went downhill after that. The mighty D, the silent killer, that is, unless anyone around you knows you have D, then they all judge you for ANYTHING you put in your mouth. Even smokers don't get this much direct flak to their face.

I have a buddy, dxd at 45.

Weird thing is, in our region, the clinic said that for some reason, within a two month period I was the 8th male in his thirties dxd with T1. One alone is shocking, but 8??? It has them all baffled.

[NoraWI]

And I was 62 at diagnosis, with BG almost 500 and an A1c of 13%. I had all the classic symptoms plus had lost 35 pounds. It was assumed I was T2 and given metformin. A year later when control went out the window and the Dr. refused to Rx insulin, I insisted on seeing an endo. The endo ordered a GAD65 antibody test which came back positive. So I was reclassified as T1 (LADA) and given prescriptions for Lantus and NovoLog. Six years later, I am thinking of going on a pump. The medical profession does NOT generally get it about diabetes!

[shabbie]

my own diagniosis arrived when i was 38 years old (3 years ago) whcih makes me L.A.D.A./ type 1.5

the GP said i was probably type 2 even though i was not overweight.

true type 1 set in about 9 months later when my honeymoon ended.

there is no question i am t1.

incidently my great granny developed type 1 at aged 70 years old after a head injury in a car accident! apparently the shock brought it on!
~ her brother was t1 from a child and died in his 50's.

my diabets nurse said you will have a gut feeling baout which 'type' you are. i 'knew' i was t1

[mmissanne]

Thanks for your replies

I'm angry of the lack of education that our so called physicians have on diabetes. In this day and time there should be no question of whom type 1 attacks. I can't believe they not more involved with recent studies or awareness.

It makes me feel frightened for my future; however; you all give me hope and enlightenment.

I pray that I find a good and knowledgeable endocrinologist and internist to help me manage.

I pray for th same for each of you. :)

[lorilei]

even without the correct doc's this site will help you manage your diabetes no matter which type they classify you as...read carefully and visit often and you will benefit so much from your own attempts at knowledge...

[Maddie]

I was 37 when diagnosed. My husband took me to the hospital ER after spending a night on the bathroom floor sick as a dog. This was seven years ago. All the typical symptoms the month before: peeing my brains out, losing weight, leg cramps. The dumb doc in the ER thought I had a blockage in my intestine so he ordered an X-ray of my lower gut. I remember fading in and out of consciousness at the time. No blockage found! Then they rammed a tube down my nose to suck up my stomach. I remember yanking it out. Then three guys held me down and forced it back down. My poor husband watched it all. Then I was properly diagnosed and spent the next three days in the hospital (one night in the ER).

I had been to my GP about a month and a half before all this took place and turns out that my fasting numbers were through the roof then! The stupid GP didn't say one word and just let it go. Grrr.... coulda killed me and that stupid doc didn't even care.

I'm still reeling from the diagnosis (I don't think anyone ever does) and can't believe that it happened to me. No one else in my family has it. I do the best that I can. Get up each day and deal with whatever I have to deal with. I have no choice but to do so. Positive attitude, faith in God and the support of my loving husband has saved the day. It isn't easy...but better than the alternative!

[megan]

I was 34 and pregnant with twins.6 months in to the pregnancy I was in a wreck,a head on collision,that was not my fault.I had compound fracture to my leg and broken elbow.I was in the hospital for 3 weeks and they diagnosed me with gestational diabetes.After I had my twin girls they took me off insulin and said the diabetes was gone,but to watch my diet and sugar intake.Well I did that and I remember thinking wow this really works cause I dropped all my pregnancy weight and then some.I started feeling really bad though and I thought that was lack of sleep from taking care of my my babies.Anyway 19 months after they were born I had to call ambulance to come and get me I had vomited all day and then became very hard to breathe.I was skin and bones.Now I am 39.