Anyone a TYPE 1.5 DIABETIC?

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tanyaS
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Date Joined May 2006
Total Posts : 7
   Posted 6/20/2006 11:39 AM (GMT -7)   

smurf  Hi my name's Tanya, I am 25 yrs old. 5'5 and 100lbs. (not your typical diabetic)

Over the past three months i have been put on glyburide, metformin and now avandia has been added to the mix. I went to talk to a diabetes nurse and dietician yesterday @ the hospital,

They believe that i could be  a type 1 or a type 1.5 because of my weight and age and my slow progress w/ the meds. They also think that the meds i am on are useless because they are made for overweight diabetics and that i would benefit more from insulin treeatments. In that way I could eat more of what I want and gain some healthy weight. I also heard that in my last lab test i had moderate ketones in my urine, don't those only show up in type 1 diabetics?

I am stil gonna continue on my meds, give them some time, as i want to avoid injections of any sort. The nurse also thinks that my pancreas will eventually stop producing  insulin, leading to me taking insulin. If anyone has any advice or knows what i'm going through i would would appreciate any feedback.

Take Care everybody! yeah


TanyaS


D-Dino
New Member


Date Joined Jun 2006
Total Posts : 4
   Posted 6/20/2006 6:08 PM (GMT -7)   
Tanya,
I am a Type II diabetic.  I have worked for primary care doctors for the last 9 years as an office manager and I do coding and billing.  I have never heard of Type 1.5 diabetic.
Recently, I started an injectable medication for diabetics called Byetta.  It is a medication that makes your pancreas produce insulin.  There are side effects but there are side effects to all medications as well as insulin.  Talk to your doctor and do the research on the medication.
Good Luck!!

desertdiabetic
Regular Member


Date Joined Dec 2005
Total Posts : 115
   Posted 6/20/2006 6:16 PM (GMT -7)   
D-Dino - type 1.5 really isn't a type officially - it is LADA. It is a diabetic that produces less insulin yet is not type 1 and does not have insulin resistance like a type 2. I think of it more of a type 1 in training... Sorry, humor does not fit the plight of a 1.5. It is difficult for the current medical profession to diagnose. The medical profession is already so far behind the curve when it comes to diabetes that adding someing as complicated to diagnose as LADA just, well, just is too difficult and out of what a doctor expects to see in their practice. It affects about 15% of all diabetics - a about 1/3 more than there are type 1's.
type 2 - dx 12/04
metformin 500mg 3x - avandia 2mg 2x


Jeannie143
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Date Joined Apr 2004
Total Posts : 6056
   Posted 6/20/2006 8:31 PM (GMT -7)   
Tanya,
If you have to start on insulin, it's not so bad. I just gave myself my evening shot and honestly, it's easier than putting on mascara. Hang in there... We'll be here for you.
~ Jeannie

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."

- Elizabeth Kubler-Ross


Warren
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Date Joined Oct 2005
Total Posts : 534
   Posted 6/21/2006 9:38 AM (GMT -7)   
Hi Tanya,
 
Ask your Doctor about Byetta. One of the benefits of this medicine is that it helps preserve the beta cells responsible for making insulin and may very well lead you to a reduction in your oral meds. The two draw backs are its an injectible (not really a big deal as you will probably never feel the injections) and that it will most probably make you nauseous for a couple few weeks while you are getting used to it.  Other than that, its a fabulous medicine, specifically designed to bring your numbers into line while preserving your insulin making capabilities. My numbers without meds are 350 fasting.  With 500mg of metformin and 5mg of glipizide and 10mcg of Byetta my fasting numbers this morning were 77.  So its pretty powerful stuff! (and incidently, Im not overweight at all)
 
scool  Warren
It's not that some people have willpower and some don't. It's that some people are ready to change and others are not. - James Gordon, M.D.
What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease. - George Dennison Prentice

I can only please one person per day, today is not your day...tomorrow doesn't look good either.


Soozie
New Member


Date Joined Feb 2004
Total Posts : 6
   Posted 6/21/2006 1:39 PM (GMT -7)   
h Tanya.
I was told I was type 1.5 awhile ago, and have since been told I am type 1, Oral meds did nothing for me, and diet didnt work. I was skin and bone. etc... I ,m sure you know the drill. I went on insulin and I have my life back. I use the pen, and take nova rapid when I eat and leviumer at bedtime. My numbers are right on track . I had a hard time a first with the acceptance of it all. I was a year before I got in to see the endo doc... by then type 1.5 was a thing of the past and I was type 1. My sugars were thru the roof and I was starving myself because I was afarid to eat anything. By the time I saw the specialist I was ready for anything. It really isnt bad.. Once you accept it, the rest is just a learning curve and then you will feel sooooooooooo much better.

Phishbowl
Veteran Member


Date Joined May 2006
Total Posts : 547
   Posted 6/22/2006 8:26 AM (GMT -7)   
Hiya, Tanya....Type 1.5, eh? Yup, that would be me.

I was diagnosed a year and a half ago at 37 yrs. old. Prior to that I was treated as a Type 2 for over a year. Throughout that year or so as a Type 2, I was put on all the same meds you mentioned until I was on maximum-dose-triple-therapy. Meaning, there was no higher dose or any more meds they could put me on that would lower my sugars. At that point I was sent to an Endocrinologist, who thought I was LADA (or "a wolf in sheep's clothing" as he called it), and was of the "pancreatic beta cell anhililation" ilk ,- Type 1, and NOT the "body's cells are just not receptive to insulin/glucose" kind,-Type 2.

I was not told at the time that I was an outright Type 1 so, stupid me left the Endo's office satisfied with an appointment at the Diabetic Centre for 4 months down the road and thinking I could still do something to my diet and/or exercise to avoid the insulin shots we discussed. Well....I landed in his office not 3 months later, after losing 8 more pounds that week and was 5'3" and 92lbs, and a total wreck. Long story short....I started insulin that day.

You are in what they call the "honeymoon" stage. Your pancreas still has enough cells making insulin but, know that with the meds you are on...they are being pushed to work overtime to eke out more insulin. They are in the process of dying off. How long that actually takes....they don't know. But they will eventually all die off. Diabetes is progressive for both 1's and 2's. As 1's though, there is currently nothing to stop that cell destruction process or replace lost cells (there is but I don't think research in process should be brought up in this post anyway :-), so insulin shots WILL eventually become your new best friend.

The only decision you need make right now is....1) for fear of shots, will you stay on meds that are just accellerating the destruction of your remaining beta cells, and will wait until you feel like you're dying and probably ending up in the emergency with DKA (look it up) before you accept the inevitable shots. OR 2) do you preserve what cells you have left and take this time to truly get your head around insulin shots and start taking them instead of the destructive meds and learn to live with your new lifestyle instead of being thrown into it with no leisure of time or of choice. If you choose the first option...chances are you'll be facing (when you awake from your stupor), here's your needle, now stick yourself. At least with the later you can get some education that'll make you feel a whole lot better about doing it. Which do you prefer?

I don't mean to come accross as harsh....I just wish I had someone explain it to me back then cause I would've picked option 2, without question. It took me a good 6 weeks to recover just from the "starvation" I put my body through by not being on insulin. Can't say it any plainer than that but that IS what happens when your body does not get insulin....it starves to death - literally.

I do know what you are going through. We are a rare breed - that's why so many docs treat us like type 2's. We are not even like true Type 1's, either because we are born with the capability of producing insulin like "normal" people. Because it is an auto-immune disease....they figure that those of us genetically predisposed to Diabetes, get really sick one day (ever had a really bad flu in the last few years?), and after the immune system is done killing the bacteria of the sickness, it turns on itself and starts attacking the pancreas' beta cells. At any rate....the destruction is irreversable and finite. There is an antibody marker test called a GAD65....it tells them at what stage of destruction your beta cells are in. I will be asking my own Endo about this test on Friday.

Sorry to ramble...there's just always so much to share :-) Do not fear the insulin injections, Tanya. I know this is easier said than done but I hope you can understand that you would be doing yourself a favor. The needles are so tiny, believe me! I had NO FAT (which is what you inject into), so those tiny needles are a dream to use. As Jeannie says...it's easier than putting on mascara. I won't lie...it's nerve wracking at first but, after the first shot or two, you'll be like "that wasn't so bad".

We're here for ya along the way, Tanya, and I'm more than happy to share what I've learned in the past year and half as a LADA. Even got to be hooked up to a continuous glucose monitor last week, so I'm acxious to see the results of 5 days worth of blood tests. But that's another post...

Take care!
Cheers,
- Phishbowl (Type 1 since Jan'05 - Levemir, NovoRapid)

"What's Not Measured Is Not Managed"


Warren
Veteran Member


Date Joined Oct 2005
Total Posts : 534
   Posted 6/22/2006 4:42 PM (GMT -7)   

I can't reiterate strongly enough to talk to your doctor about Byetta.  I was in the same place you are now.  Not a diabetic profile at all, no high blood pressure, no overweight tendencies, no high cholesteral, just runaway high blood sugar and the meds were maxed out.  Now a misconception is that the meds you are on are for overweight people.  They are for DIABETICS!!!  One pill stimulates your pancreas to release more insulin and the avandia is a new class of drugs that works to break down your insulin resistence. 

Again, been there done that!  I was taking 2000mg of metformin a day, 16 mg of Avandia and 20mg of glipizide and they weren't working!!!!  I've lost the avandia, cut the metformin to 1/4 the dose and halved the glipizide by using Byetta and my numbers are lower than they've ever been.  The lizard spit is pretty dramatic stuff.

scool  Warren


It's not that some people have willpower and some don't. It's that some people are ready to change and others are not. - James Gordon, M.D.
What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease. - George Dennison Prentice

I can only please one person per day, today is not your day...tomorrow doesn't look good either.


spooky
Regular Member


Date Joined Jan 2006
Total Posts : 101
   Posted 6/22/2006 5:43 PM (GMT -7)   

Hi there,

              LADA(Latent Autoimmune Diabetes in Adults) presents as type 2 diabetes,but is actually a slowly progressive form of type 1 diabetes,eventually requiring full insulin replacement.Byetta is helpful only in the honeymoon phase,but is not a replacement for insulin!


Warren
Veteran Member


Date Joined Oct 2005
Total Posts : 534
   Posted 6/23/2006 10:01 AM (GMT -7)   

Re reading Tanya's original post her doctors suspect she may be type 1.5 due to her slow response to the meds.  They don't know for sure and to start insulin therapy and simply let the beta cell function die without trying to save it seems a bit irresponsible to me.

scool Warren
It's not that some people have willpower and some don't. It's that some people are ready to change and others are not. - James Gordon, M.D.
What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease. - George Dennison Prentice

I can only please one person per day, today is not your day...tomorrow doesn't look good either.


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 6/23/2006 10:06 AM (GMT -7)   
Wow! I know this site is for sharing and education but I am learning waaaaay more about diabetes that I thought possible.
~ Jeannie

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."

- Elizabeth Kubler-Ross


desertdiabetic
Regular Member


Date Joined Dec 2005
Total Posts : 115
   Posted 6/23/2006 2:58 PM (GMT -7)   
Warrn is right - insulin injuections are called for. It is a very slow change, but some doctors are going to inulin a lot sooner for type 2's just to save beta cells. Very small (<1 unit) will help preserve beta cells. If they suspect type 1 then inuslin would be of great help. If they are wrong then stop taking it.

As far as holding off on injections strictly for comfort is short sighted and will only lead to having taking more insulin later on sooner than if you were to start now. Insulin in not a foreign substance to the body like medications are. it is not the medical prfessions lazy way to treat diabetes, it is what the body needs and wants - especially for a type 1. As I said above it can be very beneficial for type 2 even if taken before the medications stop controling.

My gripe with both the medical profession and diabetics themselves is the "med's and insulin are evil thinking." Okay, I do dislike the idea of injesting medicines and like to think that I am in control of my health - well, I am in control of my thinking and know that if you don't look at the long range aspects of diabetes you are cheating yourself. I don't want to have to think about insulin injections either - I really don't want to think about how my medications are failing and what do I do next. I put all my efforts in doing the absolute best for my body regardless how much of an effort it is on me. Exercise is my downfall.
type 2 - dx 12/04
metformin 500mg 3x - avandia 2mg 2x


Chutsman
Regular Member


Date Joined Jul 2005
Total Posts : 64
   Posted 6/23/2006 6:02 PM (GMT -7)   
So are you guys saying that this new Byetta thing is better to take than the other standard prescription meds for Type 2?

The short form for "you are" is "you're", NOT "your".


desertdiabetic
Regular Member


Date Joined Dec 2005
Total Posts : 115
   Posted 6/23/2006 6:17 PM (GMT -7)   
I am not saying that. Just like everything else there are different reasons for taking different drugs or approaches.

Byetta is one of the drugs that has a great success rate, even though it is a fairly new drug.

It also is believed to help with helping beta cells last longer.

It is not for everybody - you have to be in certain positon in your treatment to use it. If you are then it is good idea.
type 2 - dx 12/04
metformin 500mg 3x - avandia 2mg 2x


Phishbowl
Veteran Member


Date Joined May 2006
Total Posts : 547
   Posted 6/24/2006 7:47 AM (GMT -7)   
G'Day, All...

I've never been on Byetta but, from what I've read, it works in CONJUNCTION with typical Type 2 meds (that make your pancreas produce more insulin and/or help your body's cells be more receptive to insulin/glucose).

This seems to work great for those who have a pancreas full of beta cells that can produce the insulin required to make these meds all work so nicely. I.E. Type 2's.

However, you cannot wring blood from a stone and so, also, you cannot make the pancreas produce more insulin if it does not have the capability - there are no cells left to squeeze insulin out of. I.E. Type 1's.

We 1.5's or LADA's, start life normal but somewhere along the way, our immune system starts attacking itself or, more specifically, the pancreas. This can happen at any age. It may present itself as anywhere from hypoglycemia to IDDM (insulin dependent diabetes mellitus), depending on where you catch it in it's progression and depending on what symtoms you have at the time of diagnosis.

I don't know at what diminished-capacity level I was in when they caught mine and started treating me as a Type 2. But it was through that initial treatment and subsequent failure to improve that they slowly started to realize that I was not a Type 2. I was of normal weight, normal-low BP, normal cholesterol but sugars continued to rise and weight began to fall off despite fantastic eating habits. From the Type 2 diagnosis, it was all pretty gradual for about 15 months then, Wham! In two weeks I'd lost almost 20 lbs, blurred vision really bad, unbelievable fatigue, dizziness, confusion, and more. Scary to say the least.

Simply put...for me, some meds did their best to squish every last bit of insulin they could outta my pancreas and the others did their best to get every bit into my cells but, when it came to the end....nothing but insulin saved my life and continues to do so.

I can't say for sure if my being on the meds accelerated the demise of my insulin production but, it seems logical that they would when that's what they're designed to do - mine were beaten into submission and died of exhaustion :-) , but I do know now I could've gone on insulin sooner and saved myself a whole lot of illness and suffering.

There are some tests that can be done to help determine if you are actually Type 1 or Type 2 but you're best to ask your doc about that. Most seem to follow the course of action of treating as Type 2 and monitoring the progress. You could be like Warren, a Type 2 that doesn't seem to respond to traditional meds without Byetta or something like that. You could end up responding better to the meds your on now (sometimes they can take a while to adjust to), or you could be a LADA, in which case you eventually end up on Type 1 treatment : insulin. There is no replacement for insulin.

Sometimes time is needed to get a better picture, too. Keep monitoring your sugars, keep a food diary, and monitor your weight. If you start to lose weight, especially without trying and/or it happening fairly quickly....get thee to the doctor, pronto.

All will be well and just know we're here for ya :-)
Cheers,
- Phishbowl (Type 1 since Jan'05 - Levemir, NovoRapid)

"What's Not Measured Is Not Managed"


desertdiabetic
Regular Member


Date Joined Dec 2005
Total Posts : 115
   Posted 6/24/2006 8:06 AM (GMT -7)   
I don't know if Byetta is used with type 1.5 dor not. I do know that it is "reported" to actually help beta cell survival. Bernstein prescribes it for that reason. He mentioned that Byetta is reporting that(being new the jury is still out, perhaps) and Avandia does the same to a smaller extent. He is against any drig that requires the pancreas to work harder. i don't believe that is the case with Byetta - it gives the pancreas a break.

He also talkes about how some type 2's are using insulin sooner than ever before for the same reasons - keep the beta cells alive qand working. Injecting insulin even when your pancreas is still producing enough insulin does head off beta cell early butnout. That would be very small doses in insulin - ie <1 unit in the morning when you wake and before you eat.
type 2 - dx 12/04
metformin 500mg 3x - avandia 2mg 2x


AZDesertRat
New Member


Date Joined Jul 2006
Total Posts : 9
   Posted 7/18/2006 9:22 AM (GMT -7)   
Tanya,   Yes, as a matter of fact, when I was first diagnosed, I was a type 2 ( they thought ) long story short, come to find out I am in fact a type 1.5.   I did the whole thing with pills, etc. and now am taking Humalog/Lantus.    I had just turned 36 ( young for a type 2 ) but because I was around the age of 40 they "assumed" I was a type 2.    They didn't take into consideration other factors involved such as having all the symptoms of a type 1 at diagnosis and not being heavy as well.     I can stand to lost about 20 lbs. but it would not put me into the category of being obese.     I assumed by now you have done some research on the LADA diabetic.    I hope the ADA recognizes that real soon.     Too many of us are being mis diagnosed I think.

littlemamasheart
New Member


Date Joined Dec 2005
Total Posts : 7
   Posted 7/18/2006 9:02 PM (GMT -7)   
Hi Im Mary and was diegnosed in october with diabitis.I am on 500 mg of glucaphagein the morning.
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