Type 1.5 displacement

[rak1978]

Hello. I do not intend to use this forum as my personal blog, but I thought I might find a few of you here with this same feeling.
Since being diagnosed, first as type 1, then as maybe just gestational, then probably not diabetic, then type 2, then, oh, you're a type 1.5...you get the idea, I've had a feeling of displacement. I am sort of still in denial about having this disease mainly because I feel I don't fit into a category. I have not had a DKA experience. While I know this is a huge blessing, I still have the daily task of managing this disease as an insulin dependent person and for some unexplainable reason, I feel that I am invalid as a diabetic or that I missed out because I didn't go into DKA. I know, that's insane. I required insulin immediately upon diagnosis. I was able to go off for a while after I delivered the baby, and was on oral meds only. This lasted a few months and then I was back on insulin again. I have tested positive for GAD-65 antibodies. I know that I have diabetes (of some sort), yet, I am still in denial because I don't fit into a cookie cutter category. This has been a huge hinderance for me in taking control of the disease. For some reason, I think it's going to go away.

Any other type 1.5'ers feel this way?

[rak1978]

Another thought, I love Dr. Bernstein's book, "The Diabetes Solution", however, there is VERY little said about this type of diabetes other than that it is a mild form of type 1. The rest of the book is directed toward type 1 or 2. Frustrating.
Now I'm just ranting.
:)

[sumi]

Rant away Rak!! :banghead: I feel as if I lack information and a solid base and I'm a type 2!! We far outnumber type 1's who far outnumber you. You feeling like a bit of an orphan is only natural, I think. At least you have this forum to meet others on. Imagine pre-internet days.:flowers:

[lorilei]

yes...sorry...i wonder about this silly badge...not a young type 1 nor ever a type 2...yes...i feel ridiculous sometimes as i muddle through things that ppl in their preteens have encountered...but....

i also recognize what a sense of experience we have to add to this journey...1 leg in each camp..or actually neither camp...you really don't belong to either camp, especially when your pancreas is in absolute denial with you...

yes..having been mistakenly dx'd as gd..i did have some bitter moments of hey...this disease is not for me....this is a joke..but hey...i als no i have been very blessed to live a couple of decades without this ghost..

i think i do "get you"... i really do...i ahve always said we should have a 1.5 happy hour and am so relieved when i see another 1.5 person join...is that ridiulous or what...call it denial..dunno...much can be said about this...soemtimes i feel as though my type 1.5 experience adds nothing to the ppl who are asking questions here as well...i do not mean that as a pity party...but yes, i get you...??

[sarahspins]

I am sort of still in denial about having this disease mainly because I feel I don't fit into a category. I have not had a DKA experience.

I've been a T1 for nearly 9 years and I've never had a DKA experience. Hopefully I never will :)

I went through a period of misdiagnosis and denial, and it's quite frustrating. It took nearly a year to get the correct T1 diagnosis (I am not a 1.5, I just skipped the classic T1 presentation). I was diagnosed with GD (which I didn't really believe - I have never come across another person with true GD with #'s in the 500's), then with T2 (which I didn't believe either), and then finally T1. I had to fight to get the antibody testing done to prove it.

The way I feel about the T1 vs T1.5 thing.. after a point, you are just a T1. The only difference is that the progression of the autoimmune process is slower. After the damage is done though, the disease and management is really no different.

[foxl]

I am probably a T2 ... BUT, but, but ... several buts, including DKA so I am awaiting a Cpeptide and a Gad antibody test result. I understand your feeling of incertainty from that much.

But believe ME, you do not need to get admitted to the hospital to have a sense of certainty or finality. It sucked. Not a good place to be sick, and nowhere to grieve at all, either. :(

[rak1978]

Thanks to all of your for your comments! I don't know why I am so fixed on the type. It really doesn't matter, does it? My doc says that I am a type 1, but with some aspects of a type 2. I wish I could just nail down a firm diagnosis. I think it would help me to take it seriously. Shortly after diagnosis I had a period of a few months where I didn't require insulin. I think that might have been the last hurrah for my pancreas, because it hasn't contributed much since. I reflect on this time and think if I could just control my diet enough, loose enough weight, exercise enough, then maybe it'll all go away again like it did that time. Can you say, "denial"? Not really sure how to just accept the diagnosis (or lack there of) and just deal with the problem.

Lori, how far along with you when diagnosed with GD?
It sounds like our stories are similar. I was diagnosed shortly after my first ob visit. Although, I had sugar in my urine the last 2 or 3 times at the ob before I got pregnant and actually had a lab request from the doc for a gtt, but never went...whoops.

[Subby]

It sounds complex and frustrating to me! And many type 1s have it "easy" in a sense - take this insulin or you get as horribly sick as you were when you got DXed. Bam, the message is home. Because I have always had a cornerstone, a note of finality, I think in some ways, it made it easier to accept. I guess I'm just posting to say that I can understand this issue, it doesn't seem small to me, and while it might feel annoying that on the surface it seems a superficial case of labels and the like, those things are just signposts to something much more useful and important - knowing what the eck is really going on with your body!

[mortis505]

Hi Rachel. I cant say that I understand about the denial. When I was diagnosed I was in DKA with an A1C of 14+ and a random BG test of 573. By that time I had dropped over 40 pounds in just a few weeks, and I may as well have been a fire hydrant as often as I was going to the bathroom. Spent a few days with some needles running in me for IV fluids and was taught how to inject insulin the next day.

What I do understand is that you are having a hard time. Just have a bit of patience. I know old cliche. But it will sink in and when it does, its kind of like an inner peace(at least it was for me).

[rak1978]

Hi Rachel. I cant say that I understand about the denial. When I was diagnosed I was in DKA with an A1C of 14+ and a random BG test of 573. By that time I had dropped over 40 pounds in just a few weeks, and I may as well have been a fire hydrant as often as I was going to the bathroom. Spent a few days with some needles running in me for IV fluids and was taught how to inject insulin the next day.

What I do understand is that you are having a hard time. Just have a bit of patience. I know old cliche. But it will sink in and when it does, its kind of like an inner peace(at least it was for me).

Thanks! I'm not sure why I'm in denial either...blood sugars have been in the 300-400 range all week (that's a whole other long and boring story). I guess that registers as diabetic. Just to clarify, I absolutely do not wish to have had the DKA experience. I can't even imagine how awful it must have been for all of you and I'm so sorry that you've had to experience that! I am just looking for some sort of confirmation or categorization because my body/pancreas has been wishy washy in the past.
Enough ranting :) Thanks for listening/reading. This is a great group of people here.

[orpy]

I can so relate to your post (starter) regarding grappling with the proper diagnosis. I maintain that my diabetes was caused by drugs I took during my two pregnancies...terbulaline and magnesium sulfate (both pregnancies). During my second pregnancy while taking these drugs (ironically terbutaline in a pump), I became diabetic requiring insulin injections. After I got off of the terbutaline, I became extremely hypo...they concluded that my diabetes was gone. I had the baby...and no one checked closely to see if I truly wasn't diabetic any more.

To make a very long story short...I was diagnosed years after after my children...no explanation for my diabetes...I'm skinny, no history of diabetes...they diagnosed me first as type 2 and now insinuate that I'm really type 1 yet won't truly diagnose me. I say I'm 1.5 yet the test didn't confirm that. Anyway, I went through a lot of anger and angst about being diabetic and I am still frustrated that no doctor will admit that these drugs can be correlated with diabetes. I still think my pancreas got ruined from these drugs. Maybe I'm wrong but I've read a few articles that talk about how these drugs can affect beta cells. (I've had thoughts of finding a lawyer yet I know this would just add to my frustration).

Anyway, I do understand why you are feeling such conflict over your diagnosis. My doctors seem to think how I got it doesn't matter yet I can't let it go...it DOES matter if you think it matters.

[soso]

If it's any consolation to you Rachel, I am 1.5 and do very well and seem to the outside world to have it all sorted, but I can't deny a little bug in me that does sort of think it will go away, or it's some sort of mistake..that looks like diabetes..lol... I do accept it(like I have a choice) and intellectually I know what it is.. but there is that little emotional knub of hope there as well..
I hate explaining to people about my diabetes cos I sometimes feel as if I am trying to convince them it is all necessary and (not that this is a bad thing) people are always telling me how healthy I look!
Just keep on keeping on...

[orpy]

To this day, after over four years, there are some days when I'm doing well BS-wise that I think, maybe it's healed itself; maybe it was just a fluke.

[TommyC1]

I don't know why I am so fixed on the type. It really doesn't matter, does it?

It only matters as it affects your treatment. If your Pancreas does the on again off again thing it can make using insulin pretty tricky.
It appears that all of us, even within any given type, have widely differing requirements for keeping our BS under control. I'd suggest that you focus on learning what you need to do to take control of yours.

Tommy

[Mark H]

What is a DKA experience?

[Ategeler]

Welcome to the club! I was also misdiagnosed GD then when tested positive for GAD reclassified as Type 1.5. It is frustrating when you don't fit into a cookie cutter dx. I find it even more frustrating to try and explain to other doctor's who have NO IDEA what I am talking about. They look at me like I am crazy when I tell them I developed Type 1 later in life! Sheesh!

[warrenav]

Unfortunately, there are many shades of grey in this world. I was dx'd 11 years ago as type 2, although quite atypical (always been slim). Just recently re-dx'd as type 1.5, which makes a bit more sense, although still atypical (11 years, no insulin need?). GAD tests positive, but just a bit above the limit. C-Peptide low, but just a bit below the low limit. No insulin needed after 11 years with LADA? But ultimately it's about using as much information as you can gather about your body to make the best choices to control BG levels and maintain health.

[rak1978]

What is a DKA experience?

Obviously, I haven't been through this, so I'm probably not the best one to answer the question. DKA stands for "Diabetic Ketoacidosis". I bet if you google it you'll get a clear answer.
I'm sure you could do a search on the forum for it too.

[rak1978]

Welcome to the club! I was also misdiagnosed GD then when tested positive for GAD reclassified as Type 1.5. It is frustrating when you don't fit into a cookie cutter dx. I find it even more frustrating to try and explain to other doctor's who have NO IDEA what I am talking about. They look at me like I am crazy when I tell them I developed Type 1 later in life! Sheesh!

I hear you! If people (even doctors other than my endo) ask me what type I am, I just say type 1. It's much easier than giving a boring 5 minute explanation that is just going to confuse people.

[Rekarb]

I've only recently been diagnosed as a T 1.5. It's only been a month but I skipped the denial phase due to using a meter to measure my blood sugar.
I work in a technical field, one in where meters can be the difference between life or death. I saw my readings and I instantly began to think of the adjustments that I would have to make in order to bring those readings down. I guess I'm lucky in that regard. The canary drops dead in the coal mine and there is no room for denial. Of course, I didn't get miss DX'ed all over the place - that has to effect one's confidence and a certain amount of skepticism is probably good.
Everybody is different so you just can't blindly follow what people tell you. I see this as a feeling out process. I am groping my way along finding what the limits and interactions of diabetes is. You'll find your way just like I'm finding mine. It just takes time.

Michael Barker