Atypical Type 1b Diabetics


Atypical Type 1b Diabetics

Atypical Type 1b Diabetes is strange. It can be caused by pancreatitis, trama etc. For some with type-1b their diabets can alternate, or get better, get worse then get better. again. Please Join us if you are interested in this topic.

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Latest Activity: Jan 1

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Comment by Negg on January 1, 2015 at 12:07am

I wonder WHERE I belong...
I underwent a Whipple operation, in which half of my pancreas was removed (due to a tumor in the duodenum). As a result, my pancreas stopped working. Not only does it not produce insulin, but also other enzymes. So I'm effectively a type 1, with some other complications. I really have a hard time digesting carbohydrates (no digestive enzymes for that) so I follow Dr. Bernstein, very low carb, and it works well for me on all fronts. I don't use a pump - I'm doing fine with the shots (Levemir and NovoRapid--very small doses because of low-carb). When I'm good, my hba1c is about 5. (Cake is my downfall...) Low-carb helps me keep my weight down, so ironically I look and feel better than before I was sick.
Is there anyone else out there who 'acquired' diabetes due to an operation?

Comment by Gaby on August 11, 2013 at 4:54pm
I was considered syndrome X, prediabetic, lost weight and returned to perfect BG. Then a few years later I had Acute very severe Pancreatitis (in 2005) which just about killed me. Since. Then, I was on insulin, switched to oral meds, to Januvia, back to oral meds, and then my pancreas took a nose dive back for the worse- since 2009 I've been Insulin only- and increasingly exceptionally insulin resistant, now with a very cranky Chronic Pancreatitis laden pancreas- I have great control (yay for high school Algebra!) my hbA1c is 4.9. In switching to an Omnipod and Dexcom this week because I've become allergic to my Levemir and I'm hypo unaware. It's a strange ride not being Type 1 or 2- my Endo describes me as "acquired Type 1 w/ extreme Insulin Resitance".
Comment by JDavid on December 4, 2011 at 7:39pm

I have a THEORY...........

First, I have psoriasis & Multiple Sclerosis, both autoimmune and my thyroid issue may also be AI as well.

It is normal for our Autoimmune systems to vary in activity levels. Another thing is my MS varies quite a bit, ie my form is called RRMS or relapsing remitting MS. MY psoriasis also varies with AI activity level.

In some ways my diabetes seems to behave a bit like my MS, but not in lock step. Juvie Diabetes researchers and MS researchers are starting a joint venture in a possible treatment common to BOTH.

THEORY...... maybe our beta cells get clobbered, but not totally killed off, when our immune sys is attacking them, and we get to recover SOME, beta cell function while our AI system is quieted down, or in other words have a chance to partly recover between attacks. Each attack may leave our capacity reduced over repeated attacks, or if the respites last long enough, maybe we recover some or most of our previous (before the attack) function.

Gomerr thinking out loud.

Comment by mom2atype1 on November 9, 2011 at 6:32pm

LOL Id say exclusive is an understatement LOL... and yes obviously insulin at the moment is the best option because currently there is no other option, and while oral medication may have their down falls they also have many good points, such as less opportunities for hypoglycemic events, right now I really have no other choice but to homeschool my child because we dont dare trust the school system here to pick up on his ques for a hypo... with him being only 5 he is not aware of his lows, the only thing he can do on his own is check his blood sugar... if we knew what exactly was going on and could potentially take a different route we could eliminate the hypo events or at the very least make them less of a concern, now granted we are doing well with avoiding hypos that doesnt mean that the schools will be able to catch a hypo before it becomes dangerous in the event that he has one... oh and you can call me Liz if it helps with your lazyness LOL

Comment by JDavid on November 8, 2011 at 4:02pm

Hi Mom2........(I am lazy)

INSULIN is by far a better option than anything else, most probably would not work anyway. Another factor is insulin works quickly and is done working in hours, depending on the specific type of insulin,

Many if not most other meds can take weeks or months to reach their effect. I expect they would also take time to flush from your system as well.

They are still debating my diabetes type after 3 decades plus!
I had a BG/pancreas problem when I was 14 and again in the navy when I was 22. After a sore throat In my early 30s, I landed in the ER via meat-wagon and admitted. That is when I got a formal Dx of Diabetes.

My diabetes has basically been managed since then as a type-1 since formal Dx.

ANY who....welcome to our exclusive club!


Comment by mom2atype1 on November 8, 2011 at 3:34pm

Hello, I guess it really comes as no suprise to me that there are not many members in this group... my son was diagnosed with t1 diabetes at 12 months.... conitnued negative antibodies for 4 years and recently our endo resorted to a diagnosis of type 1B... he is 5 years old now we have tested for MODY, PNDM and nothing, all we know is that our son requires insulin and we dont know why, he has had a couple of events where he has gone a few days without insulin and maintained bg levels within range... then ofcourse at the first sign of increased bg he gets put back on his pump... his sensitivity is astonishing even to the many endo's we have seen... overall we are told he has diabetes... but no answer as to why, or even if insulin therapy is the best treatment for him... because well we dont know whats going on with him... to me being told he has t1B is like telling me that they have no idea what is going on... he has not had any trama either physically or mentally, nor any bouts with illness (other than diabetes of course) over all was the healthiest child Id ever seen before diagnosis... we know for a fact that his immune system did not attack his beta cells and so we are left with no answer... no reason... and therefore lost...

Comment by JDavid on June 27, 2011 at 4:07pm
I was doing some research, and a search on type 1b and found no groups specific to this unusual type of diabetes, so I started this group. I want to know more about this and hope to share and learn from others tips and experiences. Type-1a is considered strictly autoimmune, and type-2 is mostly insulin resistance and weight. From my reading some Type-1b's are able to go off insulin at times.

I ahve long considered MY diabetes wierd or type-O for Orphan, not typical type-1 or type2,even the LADA or MODY labels fit me.

MY Hx...

I had pancreatitis when I was 14, threatended with shots. I told them at the hopital what THEY could do with THEIR needles, and I got better.

Again, whien I was in the Navy, I got pancreatitis at age 22. I was admitted but one moring told I could return to active duty IF I could pass a urine sugar test. I guess I passed??

Then about age 34 I got a sore throat. My fam doc refused to see me for follow-up.. MY boss at work asked me to see a co doc (seems everyone but my docs could obviously see I was SICK!). The morning I saw him, he gave me a clean bill of health and back to work in time for lunch. That evening, after a tiny couple sips of Coke, my wife called for a meatwagon and back to ER and admitted to the hospital.....yep for DIABETES.

My diabetes has been like riding a double roller coaster, one on top of yet another. There ahve been times, lasting months even years at a time, my system has been in total shutdown, and other times more like an insulin dependent type-2, with little if any insulin resistance.

I was never tested for antibodies till AFTER had I started MS meds that can affect one's immune system, so my antibody levels are boarderline, not hight enough to be labeled a true type-1(a, autoimmune). I also ahve RRMS, aka Relapsing-Remitting Multiple-Sclerosis which is autoimmune, thyroid issues that flluctuate and posorasis (also autoimmune).

I have been FORMALLY a diabetic for over 30 years, but had problems long before that, yet unlike type-2, my diabetes is better and easier to manage than ever. My LABEL has changed several times (type-1, type-2, other) over the decades, but treated as if I were a type-1 and never on orals more than a week or so. I ahve been on Lantus and Humalog for about 4 1/2 years now. Beflore that I was on NPH and Regular.

What is YOUR story?


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Melissa Lee
(Interim Executive Director, Editor, has type 1)

Manny Hernandez
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Emily Coles (Head of Communities, has type 1)

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Mike Lawson
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Lead Administrator

Brian (bsc) (has type 2)


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Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)


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