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bruskie408

Could I be type 1/1.5?

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bruskie408

Hi everyone. I started reading these forums a couple of weeks ago and I was surprised to see there is a type 1.5 diabetes. I am 37 and I was diagnosed in June as type 2. My A1C was 16 and my fasting glucose was 320. I was very surprised by this diagnosis because I wasn't overweight and I have no history of diabetes in my family. When I was diagnosed I was 165 pounds and I am 6 ft 4in tall. My weight was usually around 215 pounds muscular build. I was put on Metformin 1000mg twice a day and I started exercise and low carb diet. I started feeling better and even got my weight back up to 185 pounds. In October my A1C was down to 6.9. My doctor was amazed. He called me his wonder patient. He said he has never seen anyone bring their A1C down so fast. I was so happy that I was doing great. I continued with my diet and exercise.About 2 months after the doctor visit I had a physical examination for work and they told me my blood sugar was 378. I couldn't believe it. I thought I was doing everything right. I have been almost starving myself these past couple of months to keep my blood sugars around 200. I began searching the internet for answers and I stumbled upon this site. Once I read about type 1.5 everything seemed to make sense. I looked at my original blood test and my C Peptide was .7. I was due for blood work last week and I told my doctor I wanted a GAD antibody test. He was reluctant be he did it anyways. My A1C is 9.4 now and he said my GAD test was positive. I asked him if that means I am type 1/1.5 now and he said I could still be type 2 and he is waiting for more test result. So I guess I'm asking what you guys think?

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Cormac_Doyle

It certainly sounds like you have slow-onset Type 1 or LADA.

Recent stats show that the rate of adults mis-diagnosed with T2 when they actually are T1 is potentially close to 20% of ALL DIAGNOSES !!!

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NoraWI

Ditto on what Cormac said. A positive GAD65 is definitive. Your low c-peptide result is also indicative. No other tests required. Ask for insulin. If your doctor vacillates, find another. Type 2 pills and other meds will NOT work for you if you are LADA, as you have already discovered. Metformin does make even T1s more sensitive to insulin but as your insulin production ebbs, that, too will cease to help.

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samuraiguy

Welcome to the forums, hopefully you will be referred to an endocrinologist, request to see one if your doctor is still "reluctant".

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jwags

LADA or Type 1.5 is really Type 1 but it is a slower onset version usually seen in adults. Up until recently they only thought Type 1 appeared in children, thus the word Juvenile Diabetes.  Many doctors still seem to think that type 1 means childhood onset and type 2 is adult onset.  But a low C peptide with a positive GAD is proof povitive that you are really type 1.  Many type 2's are misdiagnosed and go for years before getting the right treatment. At least you know what you are dealing with.

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bruskie408

Thank you for the replies. These past few months have been heck. This whole time I was convinced my numbers were high because of something I was doing. Even my friends and family were telling me it had to be something wrong in my diet or I wasn't exercising enough. It's a huge relief to know that it may not be my fault. I forgot to mention that I will be starting insulin tomorrow. The doctor says it's a NPH insulin. I am supposed to take 10 units in the morning and 10 units in the evening. I have read that insulin should be injected into fat but I have no fat anywhere on my body these days. I don't understand why my doctor is so reluctant to change my diagnosis. It's like he doesn't want to admit that he was wrong. I don't have health insurance at the moment so I am pretty much stuck with him until I get insurance again.

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Uff Da

My doctor treated me as a type 2 for a year and a half and the only way I could get my A1c down to 7.0 was to starve myself in spite of the type 2 meds. I almost disappeared. Well, not quite, but I got down to 105 pounds before I could take no more and started adding carbs and calories back. Then my doctor seemed surprised that my A1c went up. Duh! I finally got a referral to an endo and was prescribed insulin.

 

As a type 1.5 (which it definitely seems that you are from those test results), you will be prescribed insulin. I suggest you order two books, Using Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner. If you choose to get only one, I'd choose the first. Your library might have them. When you get through with those two books, you'll likely know more about diabetes than your doctor, from what you have said.

 

Be aware that both books focus primarily on using insulin. The dietary advise included tends to align pretty closely to ADA recommendations. Not everyone can tolerate that many carbs. I'm one who can't. But neither do I believe that as low a carb diet as most on this website adhere to is appropriate for my situation. You'll have to reach your own conclusion on diet, because people are different.

 

NPH has its disadvantages, but the newer insulins are expensive. NPH and regular should get you by until you can get on insurance.

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NoraWI

Sounds as though you have been prescribed a mixed insulin such as a 70/30. That is not appropriate for a Type 1. You should have separate basal and bolus insulins so each one can be adjusted as needed.

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pat593

Sounds similiar to what I went through.  I was diagnosed as a Type 2 and had a pretty good first year honeymoon period - seemed the Met and diet were doing the trick.  Until they didn't.  Like you, I was convinced it was my fault when my A1C started going up.  I lost 65 pounds and got down to 118 and was scared to eat anything.  I had to beg my doctor to order a GAD and C-Peptide.  I was put on Lantus - one injection before bed - and most recently, Humlog.  It is a relief to finally feel better and know I wasn't doing anything wrong.

 

I've gained about 10 pounds now since I started insulin so injecting is a little easier now that I have a little body fat. 

 

I think that most doctors, especially primarys, see many Type 2 patients who do not manage their diabetes well. They first look for other reasons for a rising A1C and few think to test for Type 1 right away. 

 

I haven't read Using Insulin yet but Think LIke a Pancreas was very helpful. 

 

Hope to learn from you and please keep sharing your progress. 

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rubidoux

I second what Nora said!  Don't fill the NPH prescription.  Do find another doctor!  And soon...  You should get started on insulin asap, but NPH is just a nightmare.

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bruskie408

Well I got my insulin today and it is Novolin N. I guess it is a cheaper version of Humulin N. I went with the cheaper one due to not having insurance. I have to go see a nurse in the morning to be shown how to inject insulin. I'm really nervous because I don't like needles but I guess it is something I will have to get used to doing. I picked up Think Like a Pancreas today at the bookstore. I will have to order Using Insulin online I guess.

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timh33

I too was DX as type 2 and none was the pills was working no matter what I tried. I had to fight like heck to get him to run the tests but he gave in and when the results came back he looked at me and said you need to be put on insulin , I looked back at him and I have been telling you that. And found me another Dr.This one works great with me and lets me be in control and do what I think is right right  for me. Hang in there and don't be worried about the needles they are so small these days that don't hardly feel them in fact a finger prick hurts more to me.

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bruskie408

I thought I would share a little good news. I finally got diagnosed correctly. It's official I have LADA. My Dr. sent my info to a Endo and she said I definately have LADA. She wants me to start a mealtime regular insulin along with the Novolin I take twice a day. I also get to quit taking Metformin. It feels good getting an official diagnosis but I don't know how I feel about mealtime insulin.

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Uff Da

It is a relief to know for sure what it is you are dealing with, isn't it? I know it sure was for me. You'll do fine with the mealtime insulin eventually. There is a learning curve with any insulin. Most of us are using different insulins, but I believe there are a few here who are using those and might be able to give some specific help should you run into questions. As I understand it, those can be somewhat trickier to get good results with than the analogs, but the price difference for someone without insurance is great, so I can understand why your doctor chose to prescribe them for you.

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Aggie

Can someone tell me why doctors are so reluctant to even order an antibody test?  Why would they NOT want to find out if a patient is actually type 1?  Makes no sense to me.

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Ronin

Bruskie, et al.,

 

I'd like to join this thread because I have a feeling that I've started down the slope myself. I got a preliminary diagnosis years ago (when I first joined DF) and I've managed, through lots of exercise and modifying what I eat, to keep my A1c's reasonable (see signature block for latest Bayer A1c Now test results).

 

I have a new primary care (former one retired) and when I got the 6.0 at the beginning of Feb I contacted her. Her reply was disconcerting because she mentioned medications and Diabetes Management Classes while I was asking what she thought about a fasting Insulin level versus a OGTT with insulin checks as the best diagnostic tool. Clearly she has the "All Adults are Type-II" mentality.

 

From my time here on DF I have learned that at 6'0", 150 lbs, exercising six days a week in the winter alternating resistance and cardio (half hour daily) and 90 minutes almost daily of bicycle/tandem riding in Spring, Summer and Fall; I don't fit the profile of a Type-II. At 67 (my father died of diabetic complications almost 40 years ago - long before LADA was identified and he was on Type-II meds back then that never helped him but he also had problems with alcohol and tobacco) I've done pretty well at keeping things at bay.

 

So, like Bruskie, I'm seeking advice from others who have already been diagnosed as Type-1.5's as to what to look out for and what to demand from my primary care. My numbers aren't all that bad - yet but I'd like to catch this early before the numbers get really bad.

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Uff Da

Ronin - If you feel that your type 2 diagnosis is wrong, then ask for antibody tests.  The GAD 65 antibody test is the most common, but when I went to an endocrinologist, I was tested for several and proved to test strongly positive for both GAD 65 and IA-2 antibodies.  Another test that would be warranted if you think your diagnosis is wrong is a c-peptide test, which will give a good idea of how much insulin you are still producing.  I see you had a c-peptide in 2008, but it would be interesting to see if the level has decreased greatly. If your doctor won't give you those tests, ask for a referral to an endocrinologist.

 

That said, it certainly is possible for a thin person who exercises a lot to be a type 2.  Jswags on this board is one example.  But if you are actually a type 1.5, it is thought that using some of the type 2 meds to increase the output of your own insulin might actually just burn out what capacity you have to produce it faster.  So it would be good to know what you are dealing with.

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Sobriquet

Just re the NPH usage- if that's what you're stuck with like I am- I have to split my dose over three injections over the day - 8am, 3-4pm and midnight to keep things level. It's a pain in the butt (literally), but it works.

 

Mealtime insulin is separate - but if you eat fewer carbs, you need less of that insulin, if that's a worry.

 

You'll put on weight again pretty quickly once you're on insulin- I was most unimpressed! Still, it beats feeling like crap and all the other terrible consequences...

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Ronin

Uff Da, et al.,

 

Thanks for the recommendation on testing for the antibodies. I had the C-Peptide test done as a baseline shortly after my initial diagnosis (actually right after I learned about that particular test) the lab standards at the time showed the 1.4 reading as low, but still normal.

 

I do have on follow-on question: If I am at the beginning of the degeneration process (i.e., my A1c's have been "ok" until I hit the 6.0) should the GAD 65 and IA-2 antibodies be significant enough to get the attention of my primary care provider?  I'm assuming that these antibodies don't appear at all unless the pancreas is under attack, but I'm not sure.

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Ronin

Everyone,

 

One thing I failed to mention - my lifestyle is really boring. That is part of my concern at this point as I haven't changed the levels of activity or the essentials of my eating for some time yet the FBG's and A1c's creep upwards.  Perhaps age is a factor.

 

Another delayed observation: I have heard that fit, active, normal weight Type-II's do exist but I've also read that they are statistical rarities. 

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ant hill

Can someone tell me why doctors are so reluctant to even order an antibody test?  Why would they NOT want to find out if a patient is actually type 1?  Makes no sense to me.

Any tests can carry a very pricy figure Particularly the GAD65 and the C-Peptide so they put you on the Metaformin as they watch your BG still on the rise while you do everything to avoid the carbs.

There are symptoms that do mark the Type 1 mold as that's Thirst, Weight Loss without Trying, Hunger, Lethargic as I see that many doctors do without having to do a test. Also there are Cowboy's out there too who don't know and there are some who don't refer you to a Endo because they feel that they have lost a client. YOU!!! as YOU are $$$ to them.

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fjordscape

Uff Da, et al.,

 

Thanks for the recommendation on testing for the antibodies. I had the C-Peptide test done as a baseline shortly after my initial diagnosis (actually right after I learned about that particular test) the lab standards at the time showed the 1.4 reading as low, but still normal.

 

I do have on follow-on question: If I am at the beginning of the degeneration process (i.e., my A1c's have been "ok" until I hit the 6.0) should the GAD 65 and IA-2 antibodies be significant enough to get the attention of my primary care provider?  I'm assuming that these antibodies don't appear at all unless the pancreas is under attack, but I'm not sure.

 

Try starting with this recent article (2011) which is an easily readable capsule discussion: http://www.clinicaladvisor.com/diagnosis-and-treatment-of-latent-autoimmune-diabetes-in-adults-still-evolving/article/203578/. It contains really specific advice about the differences between antibodies found in LADA patients and antibodies found in Type 1 patients.

 

The US government's MedlinePlus does say the reference range for c-peptide is 0.5 to 2.0 ng/ml (http://www.nlm.nih.gov/medlineplus/ency/article/003701.htm). (To convert from ng/ml to nmol/l, use this Webpage: http://www.endmemo.com/medical/unitconvert/C-peptide.php).

 

There are multiple antibodies to test for: GAD, and 3 islet cell antibodies. "Prospective studies of β-cell function show that LADA patients with multiple islet antibodies develop β-cell failure within 5 years, whereas those with only GAD antibodies (GADAs) or only islet cell antibodies (ICAs) mostly develop β-cell failure after 5 years." (article from 2005, http://diabetes.diabetesjournals.org/content/54/suppl_2/S68.full) In your position, when visiting doctors I would bring along photocopies of this article and any others that offer strong advice (like this one from 2003: https://www.idf.org/sites/default/files/attachments/article_5_en.pdf).

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Peter_V

Can someone tell me why doctors are so reluctant to even order an antibody test?  Why would they NOT want to find out if a patient is actually type 1?  Makes no sense to me.

Probably because the ADA reccomends that they do NOT test people for LADA.  Officially the ADA's reasoning is that since there is insufficint research showing any way to treat LADA other than as T2 (until that doesn't work), that it doesn't make sense to test for LADA.

Of course I have to wonder how they are going to do any research on newly diagnosed people with LADA if they don't identify them.

 

FWIW some people believe that reason ADA want to treat LADA with oral meds is because ADA is sponsored by the companies that make drugs like metformin, januvia, etc.  Perhaps oral meds are more profitable than insulin?

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Aggie

Well, it seems to me that treatment of LADA is radically different from the treatment for type 2.  Many people on this forum thought they were type 2, and had a prolonged struggle as their blood sugar rose in spite of all the type 2 meds.  Rising blood sugar is not good for anyone, yet these people were made to think it was their fault somehow for their 'lack of control'.  And then it turns out they have an autoimmune disease, which obviously is not their fault, and in the meantime they have lost too much weight while the medical community didn't even perform a simple blood test for several years in some cases.  

 

I don't see how oral meds can help LADA at all. So if the ADA recommends against testing, and the result is ultimately harmful, then the ADA is at fault.  

 

As a thin pre diabetic, you bet I'm waiting to see how my issue progresses.  If my A1c as much as tips over 6.0, I'm going to insist on testing for LADA.  That being said, I'm leaning toward believing I am type 2 due to a strong family history in other not-overweight relatives.  Crappy genes, possibly.  However, I won't rule LADA out, that's for sure.

 

I'm not usually a person who automatically mistrusts the government, but the whole ADA story just mystifies me.  It really does seem like they don't want to admit they are wrong for fear of a giant lawsuit or something.

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