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rak1978

type 1.5

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rak1978

Hi All!

I have considered doing this for a while, and I'm finally just going to do it...

I have had so much confusion over the "type 1.5, lada" thing, that it has actually interfered with my management of my diabetes...I know, I have issues...many many issues....

So, I'm changing my type on my user profile from type 1.5 to type 1. I have not seen any sign of insulin production on my own in quite some time and my dr calls me type 1....it just happened to present itself at the age of 26. I do believe in type 1.5 and this is not to discount it...it's just a personal choice to hopefully move on past this confusion I'm having.

Hope this doesn't ruffle too many feathers.

 

Probably didn't even need to announce this, but there it is.

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Delphinus
Hi All!

I have considered doing this for a while, and I'm finally just going to do it...

I have had so much confusion over the "type 1.5, lada" thing, that it has actually interfered with my management of my diabetes...I know, I have issues...many many issues....

So, I'm changing my type on my user profile from type 1.5 to type 1. I have not seen any sign of insulin production on my own in quite some time and my dr calls me type 1....it just happened to present itself at the age of 26. I do believe in type 1.5 and this is not to discount it...it's just a personal choice to hopefully move on past this confusion I'm having.

Hope this doesn't ruffle too many feathers.

 

Probably didn't even need to announce this, but there it is.

 

My opinion is this.

 

Type 1.5 is Type 1, isn't it? Honestly, I never really researched it, and if someone wants to "school" me, do it up! :T

 

LADA and 1.5 were coined, IMO, as a sub category for late bloomers so that instead of explaining that you were diagnosed late in life, and yer a rookie, and still learning, etc, you can just say yer LADA or Type 1.5 and if the person knows anything about diabetes, they will know you were a late bloomer, without having to ask you alot of questions.

 

I mean isn't LADA and 1.5, just a sub-category for Type 1? *shrugs*

 

I remember a paramedic asking me if I was a "brittle diabetic" once before. Since we are discussing terminology. I had never heard that used before, and I thought I knew alot about this condition.

 

He explained you are a brittle diabetic if certain foods, like bread, and rice, cause you to have high blood sugars.

 

I mean WTF?

 

That is all diabetics.

 

I didn't want to sound c ocky, but I made sure I let him know I knew alot more than he did. And I did, and do. I wasn't just having a pissing contest with him.

 

Meanwhile, I was on a gurney, going into severe hypo, and letting him know I was starting to see darkness, etc. I was passing out, and he was on his Blackberry and ignored me for around five minutes.

 

I am going to kick his a$$ if I ever see him outside. He could be doing harm to people, he almost did harm to me.

 

Or maybe push him into traffic. :D

 

/end rant

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Cluck

I've heard the term 'brittle' diabetic several times before now. My understanding (might be wrong) is that it means that there are massive BG swings from high to low and back again. i.e. a true rollercoaster ride :eek:

 

I'd never heard of LADA before coming to this board and I agree that it is a pretty much irrelevant label. I was diagnosed Type I at 37 .. suits me; I was on insulin from the start and my self care was determined by that not the LADA label.

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MCS

The written word helps many of us make up our minds when deciding on certain issues, well done, and good for you. I could see where this thought pattern would help you in dertermining your path and your goals.

 

 

Hi All!

I have considered doing this for a while, and I'm finally just going to do it...

I have had so much confusion over the "type 1.5, lada" thing, that it has actually interfered with my management of my diabetes...I know, I have issues...many many issues....

So, I'm changing my type on my user profile from type 1.5 to type 1. I have not seen any sign of insulin production on my own in quite some time and my dr calls me type 1....it just happened to present itself at the age of 26. I do believe in type 1.5 and this is not to discount it...it's just a personal choice to hopefully move on past this confusion I'm having.

Hope this doesn't ruffle too many feathers.

 

Probably didn't even need to announce this, but there it is.

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Subby

Type 1.5 can mean more than late bloomer, it can mean a real difference in the way insulin works and the way things are managed. Insulin needs can vary a lot, come and go. As things progress and it becomes more typically "fully dependent" like a clear case of type 1, it would be very understandable to shift thinking to straight type 1 lines.

 

I really don't see why anyone not having dealt with particular challenges type 1.5 may present (maybe for only a few years, maybe longer) have any reason or to doubt it may be a useful classification to have.

 

As for the whole "we're all diabetics" as if a type is an affront to that (or even a description of difficulty like "brittle"), I've said it before, I say it again - what on earth does that really matter if there are subtypes that people find is part of understanding their condition? Isn't what is important with the whole "in it together" kind of stuff, that we are all human, and in this case with some similar health challenges? Or, most of us at least...

 

Rachel doesn't seem to be touching on these things particularly, just sharing a bit of the journey in how to approach her own and no one elses situation. I'm grateful for it.

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Delphinus
Type 1.5 can mean more than late bloomer, it can mean a real difference in the way insulin works and the way things are managed. Insulin needs can vary a lot, come and go. As things progress and it becomes more typically "fully dependent" like a clear case of type 1, it would be very understandable to shift thinking to straight type 1 lines.

 

I really don't see why anyone not having dealt with particular challenges type 1.5 may present (maybe for only a few years, maybe longer) have any reason or to doubt it may be a useful classification to have.

 

As for the whole "we're all diabetics" as if a type is an affront to that (or even a description of difficulty like "brittle"), I've said it before, I say it again - what on earth does that really matter if there are subtypes that people find is part of understanding their condition? Isn't what is important with the whole "in it together" kind of stuff, that we are all human, and in this case with some similar health challenges? Or, most of us at least...

 

 

Consider me schooled. :D

 

And with that, I am off to bed!

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Subby

Nah, that's just my own opinion Jason, take it or leave it. Just because I posted after you doesn't really make it part of the curriculum. :)

 

Sleep well.

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rak1978

I've told my diagnosis story on here before, but here's my attempt at the short version and the reason I was so confused for so long....

 

1) OBGYN noticed sugar in urine on several office visits (over a 1 yr period) and ordered a GTT. I was not pregnant at the time and very uneducated and blew off the order for the test

 

2) Now 8 weeks pregnant, different OBGYN orders a GTT, took the test and was told I was type 1 and needed insulin right away. They said this was preexisting, not gestational.

They cut me off from their care because I was now high risk, so now I had to find a dr.

 

3) High risk OBGYN says we are going to treat this as gestational (although I was put on insulin immediately)

 

4) After my son was delivered I was released from the OBGYN'S care and saw a endocrinologist who agreed that this was probably gestational...even said that I was probably not diabetic anymore. I insisted that he order a GTT and he did.

Yep, I'm still diabetic. He said I'm an unusual type 2 (26 yrs old, 125 lbs, and require insulin), but that was the diagnosis.

 

3) 1 yr later, he highly recommends the pump to me to better manage my swings. I insist on a antibody test to see if I really am a type 2. Yep, it was positive. No, I'm not a type 2.

 

4) Here we are....type 1 and on about 40 units of insulin via the pump per day.

 

See why I have issues? For the couple of years that I was misdiagnosed, I blamed myself for needing insulin. I thought that if I only exercised more and ate fewer carbs I could get off of it. I don't feel that I am in limbo anymore. I haven't heard from my pancreas in a while and I don't want to feel guilty for needing to take insulin.

That's the story.

 

Thanks to all of you for your feedback. It's appreciated! I'm just trying to put one foot in front of the other to get some control with this disease. It's a huge blessing to have your support!

 

Rachel

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dbc

See why I have issues? For the couple of years that I was misdiagnosed, I blamed myself for needing insulin. I thought that if I only exercised more and ate fewer carbs I could get off of it. I don't feel that I am in limbo anymore. I haven't heard from my pancreas in a while and I don't want to feel guilty for needing to take insulin.

That's the story.

 

Thanks to all of you for your feedback. It's appreciated! I'm just trying to put one foot in front of the other to get some control with this disease. It's a huge blessing to have your support!

 

Rachel

 

There are many of us here who went down the misdiagnosis path before some doctor somewhere finally "catagorised" us into one or other box - and I guess most of the misdiagnoses end up being called LADA/T1.5 (??? not too sure, maybe I'm wrong here ???)

 

Ultimately, though, what counts is getting to a treatment program that handles our personal version of diabetes as successfully possible? For some, getting there requires knowing what box to tick, for others just getting there is enough. Rachel, good on you for sorting out your own approach!

 

Dave

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mason330

By the time I saw an endo I had already been on this site so I asked her if she thought I was 1.5 and she said no, "your skinny". and of course after all the bloodwork came back I got the call "you are definitely type 1" and I got that diagnosis at 39. Just my story!

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ant hill
Makes perfect sense to me.. slower developing T1 is still T1... once you're not making any insulin anyways :)

 

ERruum....... It's pritty simple isn't it, See food and look for carbs. If there is carbs there then inject and devour. Then there is the continuos insulin, The Basel. So type 1 is type 1 not 1.5.

 

My biggest concern for people who are diagnosed late in life is the fact that this is the new life and it's about managing the Blood Glucose!!! It's not at all easy! and so this forum is a guide to chill and just understand what to do. There is many people who burn out and deny the daily injections and what food contains carbs and the speed of that carb. It is intense and that will come with practice. We all know how we feel when we slip the insulin or the food and of course the exercise.

Testing is a necessary tool that will tell us whats going on and this is a thing that happens quite a lot in any one day. You will get to understand patterns like to eat as that will raise the BG. To lower it is some insulin and some exercise and avoid doing nothing!!

 

OK that's the hard bit. Whats good is the discovery of new foods, Learning what foods can do for you in terms of carbs and some other attributes too. Look at books and recipes and experiment what foods to avoid.

 

Yes there is a charge and take that charge to good use. ;):D

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foxl

(for Jason): Actually 1.5 was coined for people not needing immediate insulin use, but having antibodies.

 

And I have read articles that state LADA differs in antibody profile from "classic" type 1. So it is not quite the same in its cause ...

 

Rachel, if you change your profile, should T2's who have no insulin production also change theirs?

 

Not saying you should not, I agree the approach to management is more like that for a Type 1, at this point. So I see where you are coming from, also.

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e||ement

at the end of the day rachel, you have to do whatever it is that gives you the motivation to have the best possible management over your diabetes.

 

i support your decision, and hope it helps you along your journey to finding stability (both in mind and in blood sugar!).

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rak1978
(for Jason): Actually 1.5 was coined for people not needing immediate insulin use, but having antibodies.

 

And I have read articles that state LADA differs in antibody profile from "classic" type 1. So it is not quite the same in its cause ...

 

Rachel, if you change your profile, should T2's who have no insulin production also change theirs?

 

 

Linda,

A couple of things...I did need insulin immedately. I do have antibodies. I am not a type 2.

Not sure how your question about t2's not producing any insulin applies here.

This really isn't a big deal for me. I just wanted my user profile here to be accurate. In my every day life, I live as a type 1 and my doc and I both agree that I am. There's really no debating the issue according to bloodwork.

I probably should've just changed my profile without announcing it.

Wasn't trying to get anyone all riled up. This was personal.

Rachel

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foxl

Well ... if you needed insulin immediately, you never WERE a 1.5!

 

I was assuming you were considering insulin dependence to define condition -- that is why I made the remark about T2's.

 

I think we need to simply refer to autoimmune vs. insulin-resistant, and define management as insulin dependence vs. not insulin dependence ... as a separate issue from diagnosis. (My endo seems to muddle the two things)!

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rak1978
Well ... if you needed insulin immediately, you never WERE a 1.5!

 

I was assuming you were considering insulin dependence to define condition -- that is why I made the remark about T2's.

 

I think we need to simply refer to autoimmune vs. insulin-resistant, and define management as insulin dependence vs. not insulin dependence ... as a separate issue from diagnosis. (My endo seems to muddle the two things)!

 

Yes, I'm not sure about whether I am or am not a 1.5, I just know that I was diagnosed as an adult w/ immediate insulin therapy required.

On the comment about autoimmune vs. insulin-resistant...there are some of us who have both!!!

So confusing. :)

I think it's safe to say that we are all in this together with varying degrees of all symptoms associated with this lovely disease.

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foxl
Yes, I'm not sure about whether I am or am not a 1.5, I just know that I was diagnosed as an adult w/ immediate insulin therapy required.

On the comment about autoimmune vs. insulin-resistant...there are some of us who have both!!!

So confusing. :)

I think it's safe to say that we are all in this together with varying degrees of all symptoms associated with this lovely disease.

 

I think I fall into the "both" category ... and from what I have read, most adults develop "some" IR as they mature ... ? But, my MD is not very quick to acknowledge that I have a paucity of beta cells -- NIDDM vs. IDDM is her big dividing line. :(

 

Yep -- solidarity, right on! Always an adventure regardless of origin.

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SammyIamToday

I kinda see how you feel. My endo calls me a Type 1.5 and going back over past history, I probably am and did onset like that. However, I never knew a thing about my Diabetes until I was in the hospital. So as far as treatment has went for me, I've been a Type 1. I have the antibodies and I've needed insulin since I've been treating myself.

 

I do still have some production, but it appears to be honeymooning and has dropped a lot over the last year.

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Delphinus
Nah, that's just my own opinion Jason, take it or leave it. Just because I posted after you doesn't really make it part of the curriculum. :)

 

Sleep well.

 

I absorbed some new info, so I was schooled. :T

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foxl
I kinda see how you feel. My endo calls me a Type 1.5 and going back over past history, I probably am and did onset like that. However, I never knew a thing about my Diabetes until I was in the hospital. So as far as treatment has went for me, I've been a Type 1. I have the antibodies and I've needed insulin since I've been treating myself.

 

I do still have some production, but it appears to be honeymooning and has dropped a lot over the last year.

 

I had DKA, and insulin in the hospital. Then got released by the on-call endo, on Oral meds, without an Aye, yes, or no about prognosis or antibodies. And I do think my carb tolerance is declining. Slowly, but it is. I demanded antibody testing from my internist, who sent me to another endo, same practice (but I got switched to the jr partner) ... it is now apparent I would never gotten antibody testing from her.

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SammyIamToday
I had DKA, and insulin in the hospital. Then got released by the on-call endo, on Oral meds, without an Aye, yes, or no about prognosis or antibodies. And I do think my carb tolerance is declining. Slowly, but it is. I demanded antibody testing from my internist, who sent me to another endo, same practice (but I got switched to the jr partner) ... it is now apparent I would never gotten antibody testing from her.

 

Yeah, never done any oral meds. Kinda why I don't like the 1.5 label for myself personally. Soon as I knew I had Diabetes it was treated like Type 1.

 

They sent me out of the hospital with some scripts for crappy Novolin (no basal) and a meter. Never even signed me up for training. I learned to carb count and everything from these forums. When I went back to the doctor (not even Endo yet) six weeks later, I was carb counting with Novolin and just wanted a basal insulin to help with Dawn Phenomenon. The Nurse Practitioner I saw was trying to get me to go for mixed insulin. We settled on Lantus and Novolog after I explained to her that carb counting was easy. I think it blew her mind.

 

She didn't adjust my ratios though, so I had a lot of hypos for a while until I got in to see my Endo about 2 months later. Been pretty smooth sailing since then. Pumping is much better than MDI though, super happy with that now.

 

I think most Doctor offices just aren't very well equipped to work with Type 1/1.5's. And probably rightly so, since it's such a small percentage of people.

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sarahspins
See why I have issues? For the couple of years that I was misdiagnosed, I blamed myself for needing insulin. I thought that if I only exercised more and ate fewer carbs I could get off of it. I don't feel that I am in limbo anymore.

 

I think it's interesting that our diagnosis were so similar (I was diagnosed relatively early in my first pregnancy, and immediately put on insulin), yet we have totally opposite perspectives of it.. I never blamed myself for "needing" insulin.. in fact I desperately wanted to use it following my pregnancy and kept being told no (I was seeing a very anti-insulin internist who I am convinced was trying to make me sicker, and was completely convinced that because I was pregnant when I was diagnosed I could not be anything but a T2 and I was "too young" for the oral meds to not work). It was super frustrating.

 

I knew that all my body really needed was insulin (I was self-medicating highs over 300 at that point - I had been on insulin during my pregnancy so it was not a big deal for me.. and back then, 2-3u would bring me down pretty fast)... it took finding a new doctor (an Endo) and insisting on antibody testing to confirm it for sure.

 

My antibody tests were wildly positive and from that point I just considered myself a normal T1.. I did have a lengthy honeymoon but I never really gave much thought to LADA or 1.5, because there was really only a span of a few months where I was "not" on insulin (but using it anyways) and I wasn't able to manage at all without it... it wasn't a question of changing diet or activity as much as staving off DKA.. I would have ended up in the hospital if I hadn't been shooting up on my own.

 

It was a full 18 months from my original diagnosis to when I think my pancreas quit entirely.... which from what I understand is pretty long for a "normal" T1. My TTD over that 18 months was about 20u.. after, it just about doubled and stayed there for a long time... I use a little more now, but I still have some weight to lose now after two more babies :)

 

It is kind of interesting though, having been diagnosed officially with all 3 major types of diabetes.. of course two were obviously misdiagnosed, but I ran the whole gamut of possibilities.

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