Hi All...wondering if any Type 1's were diagnosed after age 35 and how you found out you were Type 1? (i.e. Was it a transition from Type 2 to Type 1 or an original diagnosis of Type 1?).

Your replies much appreciated as always :-)

Cheers,
-Vikingirl

Just thought you might like to know that t2 does not transition into t1. They are 2 different things. T2s may become insulin dependant, but T1 is an autoimmune disorder.

Cora

Most people diagnosed at that stage in life will find that it is simply insulin dependant type 2. You can have a simple blood test called a C-Peptide to tell you if you are making any insulin at all. That can be an indicator as to what type of diabetes you are diagnosed with. Good luck

Hi Coravh - didn't think there was such a thing as Type 2 to Type 1 "transition", even though many Type 2's eventually have to use insulin. Thanks for the verification (I won a bet on that one trying to explain to someone that use of insulin was not an indicator of Type :-)

Hi Mommyof4 - I am very aware of the statistics, as well as the proper tests that confirm diagnosis. I happen to be a Type 1 diagnosed last year at age 38 and, knowing it is uncommon, was wondering if there were more folks like me on this board.

Because of my age, my doctors thought I was Type 2 for over a year and I was treated thusly. Metformin, Avandia, Actos, Glyburide...tried them all till I was on maximum dose, triple therapy. It was only when nothing was working and I lost so much weight and got very sick that I was diagnosed Type 1 by an Endo. It was a shock to them that I was Type 1 at my age.

So I was wondering about others who may have a similar story to share.

Thanks to all for your input.

Cheers,
- Vikingirl

:wave: Hey VikingGirl. Folks like you are why they no longer call it "juvenile" and "adult onset" diabetes. What would you call it if you got it at age 90? "Senility onset" maybe? It's also unfortunate that a lot of docs just make an assumption when a simple c-peptide test would answer a lot of questions right away.

How are you doing anyway? I was diagnosed when I was 2, so I had no real adjustments to make to my lifestyle. I've had 40 years of testing and shots (now a pump). I would imagine that it takes a while to get used to.

Good luck to you.

Cora

Some call us "latent". Hey, I always was a late bloomer :-)

It's been a struggle, to say the least, in trying to obtain some semblance of decent blood sugar control. I regret to say that despite incredible dedication and learning, I've not been able to obtain "maintenance level" control of my blood sugars. My last few AICs have me stalled in the 9.somethings%.

I was put on intensive therapy within a few months of diagnosis and have made it a priority since diagnosis, to understand EVERYTHING I could about insulin, diet/nutrition, exercise, etc. I still keep a daily log of everything I eat, inject, exercise, etc. and at what times. I've read everything I could get my hands on and still do. (It's exciting to read what's coming down the pipe in the future.).

I've been trying the low carb diet for the past month or so and have lost a few pounds. I can't afford to lose any more. So, it's the balancing act again. I need to make some adjustments somewhere. It's always a challenge but I can't wait to find something that works for me.

Still working towards the pump but don't have the insurance or the $7,200 cash yet :-) It'll come.

Thanks again for all the replies!

Cheers,
- Vikingirl

Hi Viking Girl,
While I personally am an insulin-requiring T2, I know several late-onset T1's. A couple of friends of mine were diagnosed at ages 38 and 60, and my mother was diagnosed at age 68. In my mother's case, however, it was because chemo had destroyed her islet cells. The other two people, however, both had auto-immune T1.

Regardless of whether or not one is dealing with T1 or T2, it is always a challenge, and I believe it's much more so for those of us who are insulin dependent.

Ruth

Look into LADA. It's basically a form of type 1 that is diagnosed in adults with a slower onset than when it is diagnosed in kids.

Well, I can't say that my experience is the same but I was diagnosed "late". I was 21, overweight, amd my sugar at diagnosis was only 268. They tried to put me on Glucophage and other oral agents but nothing worked. They finally did all of the blood work to show that I was a type 1. I guess there are plenty of people out there but I don't know of any exact numbers.
I agree with Ruth, insulin is insulin and a pain to deal with no matter what the type

I find the statistics interesting (for North America), that less than 12% of diabetics are Type 1 and of those, less than 1% were diagnosed after age 25.

I'm wondering if some of the difficulties I'm having in trying to maintain sugar levels has to do with the age thing (not the number itself so much as the metabolic things that start happening around "mid-life"). Probably not but I'm just poking for info :-)

I've eliminated so many things in my diet, cut my carbs to 24-36 grams/meal and, as a result, take much less insulin (my dietician is not happy to say the least but I said,"I've tried it your way now let me try something else".). I also eat at the same times every day, and snacks are almost exclusively 8-10 almonds or a yogurt (7 grams carbs). Why can't I get that AIC% down below 9+%?

I'm getting very frustrated at this point. I'm wondering what would happen if I asked my doctors to put me on a less intense regimen so I can save some money and maybe have a life again. I know it would be going backwards a bit (or is it?) but after literally dedicating this last year to trying to get under control - to no avail - I want to live again. I want to stay positive but I'm afraid I'm getting much less so.

Your thoughts, recommendations, and support always appreciated. Thanks.

- Vikingirl

LADA that Blondy referred to has a twin sister, type 1.5. I think few doctors even know about these things. I am 72 and about 4 years ago I started having to watch my glucose. I am not overweight but having a diabetic kid has made me look out for such things. 2 Years ago I opted to go on medications as it was getting more difficult to keep acceptable readings. I had been eating low carb and that pretty well eliminates fiber. I started on Metformin and when that did not control I added Actos. Still problems so added Amaryl and Starlix, a quick short lived medication to cover meals. As familiar as I was with diabetes I had not heard of LADA or 1.5. Then I saw it on a post and started researching it.

Type 2 is not an autoimmune problem, type 1, LADA and 1.5 are. Those last 2 are almost, but not quiet the same. I asked my doctor to do a GAD65, something he knew nothing about but he listens to me. A positive GAD65 is an autoimmune factor and that took my diabetes out of the type2 group. Actos has no effect on this type. Co-incidentally and not related almost at the same time (about 1 month) another doctor did a series of test looking for autoimmune factors. They all came back positive. That explains most of my other problems.

I was referred to a Rheumatologist and found she didn't know about these things either. The doctor who had found all the autoimmune factors said I needed a more knowledgeable Rheumatologist. I now am waiting to see another Rheumatologist so the answers are not in yet. Most likely it will be found that I have Lupus, SLE or a couple other things.

One word about these autoimmune factors that is not well known is that the results come back with numbers but the numbers are not the important thing. What is important is that positive or negative. It is like being a "little bit preganat", you either or are not and a high number is no better or worse than a low number.

A search of LADA, type 1.5 or "what type are you" brings up lots of information on this. Type 1s usually needs insulin right away, type LADA or 1.5 usually progresses to insulin sooner than type 2. But since these glucose problems have a different cause they may need dirfferent medications. Knowing what type you are may or may not make a difference to you but I think it is best to know.

If you are interested in knowing what other lab work besides the GAD65 could be enlightening I can tell you the ones I had.

Getting controlled is difficult and in my estimation you are the only one that can know what it takes to keep the glucose under control. He's hoping the best for you.
BVan (Betty

I am likely LADA. I had a very slow onset, noticing spikes in glucose a year before I was diagnosed. I was 19. But my blood sugars never went high enough to define diabetes. Finally in September of last year they did. I never did any oral meds. I opted to go straight to insulin, using carb counting. If all goes well, by this time next month I will be pumping.

Contgrats on getting a pump. My daughter would not even consider one until the technology had evolved until she was comfortable with it. She loves her pump. Last week it "broke" and the overnighted her a replacement but she was without it for a couple days anyway. She only had fast acting insulin so she was having to shoot every 2 hours. Boy, was she glad to get that pump again.

She works a job that scheduling regular meals and such is out of the question and this gives her much more freedom.

I hope you enjoy yours too.

I watched my glucose for a few years even and I was in my 60s. So mine has really progressed slowly. It could be that the older you are at onset relates in some way to how quickly it progresses to insulin. Slow is fine with me. I don't dread insulin and will not hesitate to start on it when needed.

BVan (Betty) :wave:

Thanks so much for those last few posts, Betty & Blondy. (I hope you can get on the pump, Blondy. It's my goal, too. :-)

I had, in fact, read all I could find about Type 1.5, LADA, MODY, as soon as I was diagnosed last year. My Endo referred to these terminologies back when so I researched them specifically. I also read much about diabetes statistics, in terms of: geography, ethnic prevalence, mortality, complication progression, association to other auto-immune disorders/diseases (I've been Hypothyroid for 20 years), and a whole lot more.

I find the genetic history of diabetes quite interesting and the particularly recent research/studies trying to show a link that getting really sick (where your immune system goes into overdrive), triggers the immune system to start attacking the pancreas' cells - provided you were genetically predisposed. Some of what they're finding out is facinating.

What you say is true, too, that I (we) seem to be more informed and up-to-date than our doctors. I truly appreciate how important it is to understand yourself and take control of learning what works best for you, using the tools and guidelines provided by the professionals. It would just be nice to come accross someone can work WITH you when you need them :-)

For all that I've read, though, I've not personally or otherwise, met or could talk to someone with a similar background to mine. Therein lies my posted question :-)

Thanks again to All, for the wealth of info you always provide. Love to hear from ya.

Cheers,
- Vikingirl

It is my understanding that people over 35 with positive autoimmune markers are for all practical purposes type 1. It is just that LADA is the diagnosis for type 1 at that age. It is the age of onset that determines the name and otherwise LADA can be identical to type 1. That's like years ago type 1 kids were labeled juvenile diabetics.

The genetics of diabetes is interesting. In 1969 when my daughter was diagnosed as juvenile diabetic I was told to keep a good eye on my son as he has a 50% probability of also having it. Then things progressed where they concluded that it was caused by a virus so that is not genetic so therefore has no bearing on his future. Now we are back to them saying it does pose a risk to him I have 2 cousins, a brother and sister that both developed diabetes as youngsters. That is the only such that I have ever seen.

Have you been tested for the autoimmune markers and if so did you test positive?

When my daughter was diagnosed I had been only vaguely aware that there was such a disease. Information was very hard to come by and the doctors didn't know what they were doing....they still don't. But one interesting thing I read has stuck with me, probably as true as anything said about diabetes. It said there used to be a disease called "the fever" that was totally baffling because it ranged for a little sick with full recovery, very sick with recovery, and some died. But with the invention of the microscopy all that changed as it was discovered that the only thing in common in these patients was an elevated temperature. Diabetes is elevated blood and urine glucose and the article said it will probably someday find that we are not working with A disease but like "the fever" could be just as different.

In the last few years I am seeing it develop to that stage just as we now know type 1 and type 2 are actually 2 different diseases.
BVan (Betty)

Thank you for sharing that information, Betty. I'm grateful to be able to talk to folks about their own experiences as it helps put into perspective all the "factual" information I read.

I'm always amazed at how wide the gap is between what the working professionals say and what those who've actually had to deal with diabetes say. The whole daily carb requirements is a huge example, (my Dietician is going to give me another Food Guideline poster next time I see her :-)

From what I can tell, Diabetes research has come a long way but only recently. I can't imagine the years of sharpening your own needles, the urine tests to check blood sugar, of waiting for the next breakthrough in treatment supplies and insulins. I consider myself lucky that I'm diagnosed at such a time where Diabetes has such a spotlight on it, (and rightly so!), when new insulins, delivery methods, and monitoring tools are coming out as fast as computers these days. The statistics are scary...diabetes is epidemic (mostly Type 2). Not good.

Also not good is the fact that they really don't have a lot of historical information on Diabetes. As you say, it's only now, from recent research, that they're able to make connections to things. I have Aunts/Uncles in their 80's that remember "the starving disease" (you died from it), and "touch of the sugar". Just two examples that illustrate the lack of connection to Diabetes not that long ago. My Mom is one of 14 kids and of over 130 people on her side....none have Type 1. Only 4 Aunts/Uncles have Type 2, developed late in life. Father's side has no Diabetes in 13 people. Both Grandmothers had Type 2 late in life. Generation gaps are huge in my family history (my Grandparents were born 1901 & 1902, and in the early 1890's), so it's hard to get any accurate family medical history to compare with today, especially since they've all passed some time ago. I feel like an island in my family oasis sometimes :-)

As far as having had autoimmune tests...I can't say for certain. There were a number done a while back when I was diagnosed with thyroid disfunction, but I can't remember specifics. I've been reading up on the GAD65 today. Interesting. It, along with a few more inquiries, will be discussed at my next visit with my doctor. Thanks for that one, Betty.

Thanks again for the replies and all the support. Cheers!

- Vikingirl

[QUOTE=vikingirl]
I'm always amazed at how wide the gap is between what the working professionals say and what those who've actually had to deal with diabetes say. The whole daily carb requirements is a huge example, (my Dietician is going to give me another Food Guideline poster next time I see her :-)



Once I was a speaker, (early 70s) at an American Diabetes Assoc. meeting. After the meeting a young man came up to me and introduced himself as a doctor. He said that he treats diabetics and actually thought he knew about diabetes. He then said 2 months ago I had to put my 2 year old on insulin and since then I have learned that I didn't know anything about diabetes. Then he was learning. The problem is too many doctors never reach that point.

Getting my daughter diagnosed was a nightmare. I knew she was sick to the point I feared for her life. The doctor's said there was nothing wrong with her except that she had a neurotic mother. It was all my fault. Funny thing but I believed them and also knew she was sick. I no doubt was a neurotic mother at that point as you can't live with that much emotional conflict. The doctor who diagnosed her was getting ready to join Ely Lilly Drug Co. He told me right off that I would have to take charge of her. Before that I would accept what a doctor said, but afterwards I accepted almost nothing I was told until I somehow verified it myself. Out of that association we received invaluable help from Lilly.

When I was told that she is diabetic I checked with my medical encyclopedia that was a few years old. In essence it said that children die. I learned from that too. Never use outdated material and always be careful as to the source of the information. On these sites sometimes I see someone who has been diabetic 50-60 years and I really wonder how they survived. Had she been in a time a few years earlier I doubt that she would have survived because of the insulin that was available.

Thankfully there were the disposable needles. The syringes were very poorly designed. But worst of all was not having home blood tests. Without that you are driving blind. Urine testing for glucose is totally worthless. Insulin was not a good product compared to today and Lilly came to our rescue even after we moved far away by sending us a new insulin that was just ready to be on the market. Then she became resistant to that one also and it happened that the same thing happened again. That time they admitted her to their hospital facility and introduced another brand new insulin. Taking new meds can sometimes be risky but for us it was a lifesaving.

What type are you being told you have? If they didn't tell you about the GAD 65 type test it is a good guess that they don't know about them either. Being told type 1 when actually it is LADA I don't think is harmful. Being tolld type 2 can be harmful. In a case like my daughter, she has not been tested but at this point there would be no point in it at all since she has been on insulin all these years. Treating me on the other hand as type 2 is a mistake. But even so at this stage it does not make a log of difference to me. But I did drop one drug, Actos, which has no effect on type1. How long have you had diabetes?

I think my daughter is a "sucess story". She holds a job that is demanding and one that requires an intense physical yearly. When they tried to screen her out just because she is diabetic she fought it saying her health not diabetes is what counts. She has done a number of things to further the cause for diabetics being tossed out on that basis.

BVan (Betty)

Hi All...wondering if any Type 1's were diagnosed after age 35 and how you found out you were Type 1? (i.e. Was it a transition from Type 2 to Type 1 or an original diagnosis of Type 1?).

Your replies much appreciated as always :-)

Cheers,
-Vikingirl

Hi there, yes me Im 39 and was diagnosed with type 1 two yrs ago, one minute im cooking new yrs dinner next im in intensive care. Had never been sick or anything, I didnt even know anyone with diabetes, this is the worst nightmare of my life, how the hell children handle this Ill never know.

Kudos to you, Betty, for taking control and helping to make your daughter's diabetes a success story, (as well as yourself). There are a number of folks like you on this board that have provided invaluable information and insight. I thank you All for that.

It's been very evident to me from very early on, that one needs to take control in order to acheive success. I always believed that knowledge is power. Having said that, though. I will be the first to admit that while I was trying to deal with being Type 2 for over a year (that's what they originally thought I was), I really didn't end up knowing much about Diabetes. What I knew was limited to diet and exercise and oral meds. I really only started to research all I could just over a year ago, when I was diagnosed Type 1 and put on insulin. At that time, my Endo talked to me about LADA, Type 1.5 and basically summed it up to suspecting I fell into that category. I don't think there was a GAD65 test done but I will ask about it at my next visit (with my GP next week and Endo 1.5 months from now).

Will let you know what their responses were. Thanks again :-)

Cheers,
- Vikingirl

Get a pump Its about as normal as you can be if there is such a thing. Look at the positive side at least it manageable not a terminal condition. I was 26 when diagnosed. Now 45. So far so good. The pump dropped my a1cs from 8's and 9's to high 6 and low 7's. I was on shots for 17 years. You are lucky the technolgy and insulin has come allong way. It is evolving at rapid rates

My daughter on insulin since 1965 has always been very brittle. And I know some people say there is no such thing it's just that they aren't taking care of themselves. :rolleyes: She was not confident of the technology for a long time. She is now in her 2nd year on the pump and it makes a big difference. She has a job that makes a set schedule of anything almost impossible and the pump gives her freedom from that. Her A1Cs are better too. Midilife you are doing well as that is quiet a drop. My daughters pump broke a couple weeks ago and she was without it into the 3rd day taking shots every 2 hours. They sent her the replacement quickly it was the way her schedule worked out. She was really happy to get that meter back.

Vickinggirl, being wrongly diagnosed as type 2 is bad. The difference in being type 1 and Lada is not that significant, however it is my understanding that the only difference in 1 and LADA is the age of onset. I have some very good references if you are interested. One good site is postgradmed.com. My doctor didn't know anything about it so I gave him references. I might add that he is a GP not an Endo. It is my choice that I am with him still.

BVan (Betty)

I understand "brittle", too. It's the word my doctors most often use to describe me - still. I know what you mean about the initial assumption being that the patient just isn't doing what they should to control sugars. Mine don't say that about me because I've always come armed with tons of data (daily food logs, Excel logs/graphs, notes, etc.), to support my current situation. In fact, I think it makes them uncomfortable sometimes that I may be more on top of things than they are.

I was fortunate to have a CDE that worked with me relentlessly in an effort to get my sugar control stabalized, but I've been flying solo since last fall. I have a dietician that favors whatever the CDA guidlines are and an Endo that defers the detailed things to his CDE, of which I don't have a new one yet :-) My GP is fantastic; always reliable and available, open-minded, and genuinely cares.

I have been recognized as medically requiring the pump to help obtain some control with blood sugars and it is my goal. I will get on it as soon as I can afford to. I must admit I'm a bit scared but believe it will turn out to be the best thing for me.

One of the things I'm curious about, in being diagnosed Type 1 mid-life, is how long this LADA progression actually took? In retrospect, I was hypoglycemic for years before being initially diagnosed Type 2. It was a round of prednizone for eczema that caused my eyesight to deteriorate, when my GP decided to test sugar levels. I'm sure had I been tested years before I would have seen signs then. But I just didn't know any better.

Given the epidemic prevalence of Diabetes, I would think doctors would start adding blood glucose testing to standard blood panels. Make it a standard for new borns and yearly check-ups. From much of what I read, most Type 1s find out about their condition when they end up in the emergency room. That's just not right anymore.

Cheers,
- Vikingirl

It's a different world now than when diabetes hit us but some of the same lines are still around. As I said before we were fortunate enough to have help from Lilly Co. All we had at home in a way of testing was urine glucose. I told Lilly that urine glucose means nothing. Now that is common knowledge.

They wanted to give me the line relating to brittle. They did not say there is no such, but said I was not doing this right. She needed to be hospitalized for an unrelated problem and was in Riley the hospital where Lilly is. She was on a ward for children with chronic severe problems, many terminal. They tried to give those kids as normal a life as possible. There is a school and the kids are not treated like patients. They are up in the AM make their beds, dressed and all and off to school. The meals were served family style, that is in dishes on a table as people normally do at home. She was the only diabetic there and the diet was not catered to diabetic diet. (Actually she never used a "diabetic" diet anyway". They have sitters, non medical personal that take the place of parents. For 1 week they allowed her to eat with the other kids as she choose to do. They had a dietitian that came in that just watched and recorded everything she ate. At the end of that week they gave her a plate of food consisting of what they wanted her to eat, the exchange diet. They were very careful to see that she ate everything and if there were a few bites of something she wouldn't finish they would get something else to equal that. In that way they knew exactly what she ate. At the end of the 2nd week there was no difference in the 2 weeks. And they did the glucose test that she would have done except that they wanted to know it was done correctly. They used every different brand of test strips to compare them.

Incidentally, she was in the hospital and Lilly just sent their services to her. They had my permission but other than that the diabetes was not part of why she was in the hospital. You need "normal" activities to really adjust insulin and that was as normal as could be. In the afternoons we took long walks through the hospital tunnels and she was even allowed to use the swimming pool. So it was good, controlled conditions. Afterward she went to Lilly camps which were absolutely excellent. There they also had her under controlled conditions. They never blamed me or her diet for the swings.

It irks me when people say there is no such as "brittle". I'd like to respond with a "you try it". People who can be well regulated try to take more credit for that than they are entitled to. I'm sure there are those who are not regulated due to their own fault but not everyone falls into that category.