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hexex0

New LADA concerned with GAD65 labs

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hexex0
New member, former lurker for the past couple of weeks.  Hi!

 

I'm newly diagnosed as LADA, formerly type 2 for several years.  I'm still trying to make sense of the diagnosis, the change in treatment, what it means for me, etc. but my immediate concern is that I don't understand my GAD65 antibody labs.

 

I'm planning to ask my doctor as well, but in the interim I'm hoping someone here might have some insight for me.

 

I see people posting results and reference ranges in units of nmol/L but mine are in U/mL which from what I've discovered are “international units”.  The reference range is 0.0 – 5.0, and there's a comment that says my tested value is > 5,000.0 U/mL.

 

When I search around online, I only find references to results that high, in units, related to rare and frightening nervous system disorders.

 

Does this make sense?

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NoraWI

I always thought that any positive GAD65 antibody test is definitive for T1 (autoimmune). Never knew they had a range. Have no idea what the range would mean. The treatment is insulin which will protect the remaining beta cells in the pancreas. And I also believe that the few T2s who are found to be positive on a GAD65 test are misdiagnosed LADA (T1).

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hexex0

Thank you both for the replies.

 

I had been controlling my sugar well with a very strict ketogenic diet, but the doctor asked me to try a more balanced diet and insulin, and I agreed, so he has me on Lantus and Novolog injections.  My numbers were better on keto, but I'm still adjusting.

 

As for the possibility of a lab error, I agree the number seems wrong -- but it states on the results that it was verified by repeat testing, so they must have thought so too.  I'm not sure that means it's not a testing error though.  I literally scoured the web for reference points and just found abstracts for studies.  A lot of them were for something called SPS (Stiff Person Syndrome) that presents with very high numbers like that. You'd think they'd be able to come up with a more original name for that syndrome, by the way.

 

I took your advice and left a note for my doctor asking him to explain the results.

 

In the mean time I guess I'll keep sticking myself with needles and worrying about collapsing in pain when a car horn goes off near me.

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jwags

Since my GAD came back negative, even with a low c-peptide, my ENdO won't put me on insulin. I have done a low carb/KETO diet for 9 years and bgs are creeping back up into dangerous territory. So at least your Endo understands your problem

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rzrbks

Odd, the preferred treatment, for several years, out of John Hopkins and other Top research hospitals was to put the newly diagnosed on Orals and Insulin and then, carefully, over time, determine which was the better route for that patient.

 

In my case, even without tests, CDE and GP put me on insulin immediately  --- for which I am eternally grateful. Best guess, by CDE and GP, was T1 ( all the classic signs) and have had pretty good control for 15 years < worst A1c has been 6.9; Avg has been 6.1>

 

The main thing is that eventually, for most, the treatment will be the same:  Basal insulin and Bolus insulin.

 

So, in reality, it doesn't matter which you are, the end result will be the same.

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jwags

I think many Type 2's get lousy treatment. We are always advised to lose weight and diet evennif we don't need it. a KETO diet for 9 years has kept my bgs in a slightly elevated range but not terrible. Since my HbA1 c is under 7 they don't want to add insulin because of the fear of lows. I am just afraid that the complications I already have will progress.

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hexex0

I think many Type 2's get lousy treatment. We are always advised to lose weight and diet evennif we don't need it. a KETO diet for 9 years has kept my bgs in a slightly elevated range but not terrible. Since my HbA1 c is under 7 they don't want to add insulin because of the fear of lows. I am just afraid that the complications I already have will progress.

 

I agree about lousy treatment.  Also, I think that most doctors do not understand how well one can control numbers with keto if they still produce any insulin.  Once several years ago, a doctor told me that I was no longer diabetic because I had lost some weight and my A1C was in the high 5s on keto -- nevermind that a few carby meals and I was in the mid 200s for days?  I know it's easier said than done, but have you tried looking for a new doctor who understands these things?

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algarve7

I think many Type 2's get lousy treatment. We are always advised to lose weight and diet evennif we don't need it. a KETO diet for 9 years has kept my bgs in a slightly elevated range but not terrible. Since my HbA1 c is under 7 they don't want to add insulin because of the fear of lows. I am just afraid that the complications I already have will progress.

 

How low is c-peptide? How about a direct measurement of inulin level? Normally if you aren't taking insulin injections, you can measure insulin directly as well as c-peptide.

 

Are you measuring your BG level after meals? How high are your BG levels going and how long till they return to "normal" levels?

 

You should be afraid of complication over the long term. You should be aiming for BG levels around 80 mg/dl, just like a healthy person, to prevent complications and insulin may be the only way to do that if you don't have enough endogenous insulin production. The longer BG levels remain high the more damage is done over the long term. If your diet is very good you'll get by with only small doses of Bolus insulin to prevent highs after eating, bringing your BG level back to normal again sooner. Your natural low level of insulin production might be enough for Basal insulin.

 

GAD isn't the only antibody test for autoimmune diabetes. You might have insulin antibodies. Also other antibodies are Anti-IA-2 antibodies, ICA-IgG (Islet cell antibody-IgG) and ICA CF (Islet Cell Antibody CF). I would be trying to get some of those tested and if they are postive, there's your diagnosis for getting insulin if you decide you want to take it. Having said that, a very low c-peptide level should be enough indication though. I would use Regular Human Insulin rather than any of the analogs because it's bioidential to human insulin.

 

Also you could look at measuring 1,5-Anhydroglucitol (1,5-AG). Normal range is 14.0-46.0 µg/ml. Lower values indicate worsening glucose control. My last blood test for 1,5-AG was 9.0 µg/ml. Previously I had lower values of between 8.6-8.8, so maybe I have slightly improved control recently. You can calculate the Average blood glucose (ABG) from 1,5-AG. ABG = (28.7 x HbA1c) - 46.7. So for 9.0 the ABG level = 100. I can't remember where I got this formula though! My HbA1c has been in the range of 5.0 to 5.4 for a long time, so this marker isn't enough indication. See below.

 

 

1,5-Anhydroglucitol and Postprandial Hyperglycemia as Measured by Continuous Glucose Monitoring System in Moderately Controlled Patients With Diabetes

 

The importance of tight glycemic control in preventing the complications of diabetes has been well documented. More recently, studies indicate that postprandial glucose may be an independent risk factor for the development of macrovascular complications. Many patients who are otherwise well controlled by HbA1c (A1C), the current standard indicator of overall glycemia, also have significant postprandial hyperglycemia. Currently, available markers for measuring glycemic control, including A1C and fructosamine (FA), only reflect average glucose, potentially missing important hyperglycemic excursions that may be balanced out by hypoglycemia. Therefore, an alternative marker that robustly reflects postprandial glucose excursions could be useful in the management of patients with diabetes. Plasma 1,5-anhydroglucitol (1,5-AG) is a naturally occurring dietary polyol that has been proposed as a marker for postprandial hyperglycemia.

 

http://care.diabetesjournals.org/content/29/6/1214.full

 

.

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jwags

My c-peptide is 1.1. My Endo was able to get me more strips from Medicare, 4 per day. So now I can test after every meal. I have been doing a LC/ Keto diet for the past 9 years. My HbA1 c always comes in much higher than my meter average, My concern is I have cut my carbs down to 5-10 per meal but my pp's are still around 110-120. My meter average is 97. I am fairly thin, 111-112 pounds. I try to walk 5 miles most days. My Endo just did the GAD, not the other antibody tests. She wants me to try other oral meds but I am hesitant.

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BigMouithXXX

BTW -

 

I see people posting results and reference ranges in units of nmol/L but mine are in U/mL which from what I've discovered are “international units”.  The reference range is 0.0 – 5.0, and there's a comment that says my tested value is > 5,000.0 U/mL.

I suspect 5,000 U/ml is the same as 5.  If you are over 5 you test positive.

 

At least that is how I read it. 

 

jwags congrats I am guessing you have a new grand daughter.  I have been off line this year.  I got locked out of my account and couldn't get it reset.  My new handle is much more descriptive.  Too bad I fat fingered my ID.  The writing was small enough I couldn't see the typo.  I had a devil of a time figuring what I did wrong.

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jwags

BTW -

 

I suspect 5,000 U/ml is the same as 5.  If you are over 5 you test positive.

 

At least that is how I read it. 

 

jwags congrats I am guessing you have a new grand daughter.  I have been off line this year.  I got locked out of my account and couldn't get it reset.  My new handle is much more descriptive.  Too bad I fat fingered my ID.  The writing was small enough I couldn't see the typo.  I had a devil of a time figuring what I did wrong.

Yes she is 2 months old. She is a real dollpost-17382-0-39253800-1458233124_thumb.jpg

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