Idiopathic type 1 diabetes

debbiiee

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287
Some forms of type 1 diabetes have no known etiologies. Some of these patients have permanent insulinopenia and are prone to ketoacidosis, but have no evidence of autoimmunity. Although only a minority of patients with type 1 diabetes fall into this category, of those who do, most are of African or Asian ancestry. Individuals with this form of diabetes suffer from episodic ketoacidosis and exhibit varying degrees of insulin deficiency between episodes. This form of diabetes is strongly inherited, lacks immunological evidence for β-cell autoimmunity, and is not HLA associated. An absolute requirement for insulin replacement therapy in affected patients may come and go.
Have anybody gone thru this?? Periodic need of insulin therapy???

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phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
Yes, they are the same thing, in fact if you look the blog uses both terms. Basically it's something that they have discovered more about since it was defined as part of t1b and is now probably more often called ketosis prone diabetes or ketosis prone T2 but you will find both terms if you look for papers about it.
http://www.uptodate.com/contents/syndromes-of-ketosis-prone-diabetes-mellitus
Basically it sit's astride the 2 categories
http://www.diabetesselfmanagement.com/Blog/David-Spero/neither-1-nor-2/


There may also be people who fit into the T1b category because they have what appears to be T1 (and it is always ketosis prone) but have no evidence of an autoimmune process.
 
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emikedbarker

Member
Messages
10
Type of diabetes
Type 2
Treatment type
Diet only
How could i find anyone with idiopathic type1 diabetes or ketosis prone diabetes here in this forum?? Help pls:(

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I saw that you logged onto the site. I know the site can be a lot to slog through but it is there to be the central source of information for this type of diabetes so I keep putting relevant information in as I find the time.

Anyway, what can I help you with?
 

debbiiee

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Messages
287
Actually when i went to the doctor first he said me i was idiopathic type 1, since there was no chance for autoantibodies. So I want to know what that is. Anyway i am type 1:) & in honeymoon phase now bcoz my c-peptide values are in the lower limit of normal...

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Spiker

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Messages
4,685
Type of diabetes
Type 1
Treatment type
Pump
Some forms of type 1 diabetes have no known etiologies.

Surely "most forms of type 1 diabetes have no known etiology"? ;-)

For autoimmune type 1 which is the overwhelmingly prevalent form, there's a conspicuous gap at the beginning of the etiology - how and why does the autoimmune reaction happen? There's plenty of speculation to try to fill that gap, but no 'known etiology'. :)


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debbiiee

Well-Known Member
Messages
287
@Spiker... Its 100% true. Our immune system just gets confused to differentiate self & nonself antigens and starts the process of destruction thinking beta cells as enemies:p
Its not only with diabetes but with plenty of diseases!!!

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emikedbarker

Member
Messages
10
Type of diabetes
Type 2
Treatment type
Diet only
Actually when i went to the doctor first he said me i was idiopathic type 1, since there was no chance for autoantibodies. So I want to know what that is. Anyway i am type 1:) & in honeymoon phase now bcoz my c-peptide values are in the lower limit of normal...

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"Idiopathic" means just that: no known cause. It is a catch all term for an abrupt diabetes onset which does not involve autoantibodies than can involve DKA along with extremely high blood sugars and A1c.

Actually, your diagnosis is what I got because of my c-pep. If I'm on honeymoon then it has lasted 5 years now.. I really can't say if you're a KPD but it does sound like it. How long since you were DXed?
 

debbiiee

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Messages
287
6 months since diagnosis. I was on novomix30 twice a day. Only for the past 1 month I was going low always even if i take very little insulin;) I have stopped insulin, but my postprandial values are higher often which comes down to normal level in 4 hours. So I have asked for a rapid acting bolus alone to be taken with meals. I am going to my doctor tomorrow:)

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emikedbarker

Member
Messages
10
Type of diabetes
Type 2
Treatment type
Diet only
6 months sounds about right to start having trouble with the basal bolus for KPD. This is because the second phase slowly kicks back in. IAs I remember, I was on basal about four months before the lows began to kick in.

This is a transitional period for a KPD and their care givers as well. Insulin production is going up while insulin resistance is going down and this is all occurring unevenly whilst the diet is changing. The first year is never smooth.

For most care givers, this is uncharted waters. They will typically put you on Met as a first therapy then, when that is ineffective move you to some sort of combined therapy because of those stubborn post prandials. Once that is tried then there really isn't a choice but to go to a fast acting insulin to control them.

What is being missed is the critical importance of diet for KPD's. KPD's tend to be extremely sensitive to carbs and unlike T2's these changes tend to be more acute. For instance: high blood sugars will adversely effect insulin effectiveness in the space of hours. This means a reduced 2nd phase and blood sugars will stay high for longer and longer periods until there is no 2nd phase and the person becomes at risk for DKA again.

Food and the KPD's reaction to them needs to be checked after the first hour because the reduction in that spike is critical. YMMV but I would say that this spike shouldn't exceed 180 mg/l. (Since we are talking across the pond, you should keep in mind what units we are using.) The idea is that the magical number you want get below in 2 hours is 140 mg/l.

Here's the thing: a KPD's body really doesn't seem to care how you get down to that 140 by two hours. If you do it by diet, exercise or insulin or any combination.of the above, things will tend to stabilize. This is how I actually handle this sort of diabetes and I've been able to keep my A1c around 5 for years.
 
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debbiiee

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287
Thank you so much for the information. If i can control this postprandial spike with diet & exercise, then i need not take rapid acting insulin ,right? But since i am unable to prevent this, I am opting for insulin... I will be happy to know about your diet, exercise & medications Mike...:) Pls

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debbiiee

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Messages
287
Thank you spiker:) I am using the mg/dl unit & thank you for the mmol equivalents:p

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emikedbarker

Member
Messages
10
Type of diabetes
Type 2
Treatment type
Diet only
Actually, I should thank you. I have been so wrapped up in the scientific data that I had forgot that people are looking for simple clear information. I'm going to change the blog a bit to reflect this.

I control my diabetes purely through diet. This is interesting because when I was told of my diabetes, I had actually rode eight miles on my bike to get to my doctors office. This isn't to say exercise isn't useful, it just points up the fact that the central issue is what you ingest.

You say that you are doing low-carb. In some ways I was lucky. I'd never heard of low-carb. What my diet consisted of was low-meter. It wasn't until I had assembled this diet that I found out about low-carb. You have to be careful here. Everybody is different, what might be low-carb for one person may not be for you. The only way to find this out is by using your meter to check what happens to your blood sugars an hour after eating and cataloging what is problematic and what is not. Eventually you will eliminate most of the problem foods and the problem foods that you still ingest, you will find a way to make sure they don't cause hi blood sugars.

One nifty way is exercise. It is a good thing to think of it almost as a dosage to offset high BG's. Suppose you eat an apple and you know, pretty close to where that is going to take you. Say it goes up to 220 after an hour. This means that you have to scrub off 80 mg/L of sugar in an hour. I know exactly how far I have to walk per every 15 mg/l that I need to scrub off (By the way, this exercise should be low intensity.) You will note that I'm talking about exercise exclusively after eating. It isn't that I have anything against exercise. It makes people feel better and you should do as much as you like but here it is strictly a med for safely containing blood sugar.

I still use insulin but I do so as needed. There are somethings that I simply like. I have Pho once or twice a month. I know I need 25u of insulin to keep the rice noodles from blowing me away. I go to the movies regularly and I must have my big tub of popcorn and butter. This is 11u of insulin. Shrimp fried rice is 30u. You get where I'm going here.

I will also tell you that I do take two supplements. I take a one a day multivitamin and a baby aspirin. I also should bring up that low-carb greatly increases your need for salt, as well.

I've been stable for years. I rarely check my blood sugar and within reason, I eat what I want. Recently, I went for an employment examine and I had to tell them that I was diabetic because the tests showed normal. I'm not. This regimen is what preserves me. If I quit it, I get to be a diabetic real fast.
 
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debbiiee

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287
Thank you mike. I am really encouraged much. I feel bad when even low carb foods affect me adversely at times. But now i know the reason. Thank you... I will try my best for a better control:p
Once when i chrcked my sugar levels every 15 minutes during exercise the level was dropping like this: 207-151-137-97 mg/dl. So after food, mild intensity exercise works great for me:)

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debbiiee

Well-Known Member
Messages
287
@Mike
I would also be pleased to know about BMI. My body mass index was 18 at diagnosis after 7 kgs of weight loss, then 18.5 with insulin in a month, then I was 19... But now again I went down to 18. I am looking so lean that everyone who knows me inquires Why my weight has gone down. But I am not concerned much about this, just want to know if this KPD is related to low body mass index too....

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