[benm024]

Hi all,

I am a newly diagnosed type 1 as of last week. I actually think what I have is LADA. My Endo just calls it Type 1 and says regardless of what you have it all ends the same, which is being completely insulin dependent. Right now my numbers are just pre-diabetic but he found a small amount of GAD antibodies. I know I have some sort of window before all of my Beta cells are killed off and I want to take advantage of that to get into trials, try drugs that have helped in studies, or whatever else.

My endo is more of a "if it has not been proven to help I won't prescribe it" type of guy. If you are from this area do you have an Endo that you recommend? One that would be willing to try some things with me and see if there is any way to delay or prevent the inevitable. I appreciate any advice.

I have been trying to find some way to send a PM to people here but no luck so far, so hope this method of reaching out is appropriate.

Thanks,

Ben

 

[Shanny]

Hello Ben, and welcome from yet another Missourian.

As you continue posting, you'll reach the "active member" level and then you'll be able to send/receive private messages. But this is a perfectly acceptable way to contact our KC "constituency".

Glad to have you with us - thank you for joining us!

 

[foxl]

Ben and I chatted via messaging yesterday, and found out we use the same practice group! The doc who overlooked the opportunity to make a recommendation of GAD-65 testing for me (barely obese, but yes, obese; diagnosed in DKA with a prior history of autoimmune thyroid disease ... ) is in fact his doc. I am hoping this guy learned from my case, and my pushing for testing and insulin, in his practice group!

 

[Shanny]

Ben and I chatted via messaging yesterday, and found out we use the same practice group! The doc who overlooked the opportunity to make a recommendation of GAD-65 testing for me (barely obese, but yes, obese; diagnosed in DKA with a prior history of autoimmune thyroid disease ... ) is in fact his doc. I am hoping this guy learned from my case, and my pushing for testing and insulin, in his practice group!

We can only hope, eh?

Good luck, Ben!

 

[Neinstein]

Hi Ben. I am also LADA, diagnosed a year ago, first diagnosed with Type2. I'm in NC. Also interested in trials, but I have quickly become insulin dependent. I have a pump, which is great. Trying to work with a new glucose monitor, but having some difficulty. There is a bit of learning curve. Looking forward to becoming glucose stable. Be vigilant with health care pros! Insist! Try contacting teaching hospitals. Boston, Duke Good luck!

 

[benm024]

Hi Ben. I am also LADA, diagnosed a year ago, first diagnosed with Type2. I'm in NC. Also interested in trials, but I have quickly become insulin dependent. I have a pump, which is great. Trying to work with a new glucose monitor, but having some difficulty. There is a bit of learning curve. Looking forward to becoming glucose stable. Be vigilant with health care pros! Insist! Try contacting teaching hospitals. Boston, Duke Good luck!

Hi everyone. Thank you for the welcome.

Neinstein, I am interested in finding coralation between amount of GAD antibody level and progression to insulin dependence. Do you by any chance what your GAD levels were and how long it took you to become insulin dependent?

Thanks,

Ben

 

[foxl]

(sorry to break in before Neinstein).

Ben have you looked at PubMEd articles on LADA and GAD-65, yet?

I have combed through them -- although sometimes people on the boards still can point me to some -- and from what I can tell, there is a correlation between high titers and progression, as well as young age at detection, and progression.

If the units reported and test types are comparable, between Mayo Labs (which our practice uses for anitbody testing) and Quest Labs, mine went down after a year of low-carbing, if that provides any insight to you ...

 

[foxl]

Here is a very recent one -- I ahven ot even read it yet, but it looks promising! This link may not work -- I am behind a firewall and cannot test it, but you can go to PubMed and find it by the title.

World J Diabetes. 2010 Sep 15;1(4):111-5. Latent autoimmune diabetes in adults: A distinct but heterogeneous clinical entity. Nambam B, Aggarwal S, Jain A. Source Bimota Nambam, Shakti Aggarwal, Anju Jain, Department of Biochemistry, Lady Hardinge Medical College, New Delhi 110001, India. Abstract Latent autoimmune diabetes in adults (LADA) accounts for 2%-12% of all cases of diabetes. Patients are typically diagnosed after 35 years of age and are often misdiagnosed as type II Diabetes Mellitus (DM). Glycemic control is initially achieved with sulfonylureas but patients eventually become insulin dependent more rapidly than with type II DM patients. Although they have a type II DM phenotype, patients have circulating beta (β) cell autoantibodies, a hallmark of type I DM. Alternative terms that have been used to describe this condition include type 1.5 diabetes, latent type I diabetes, slowly progressive Insulin Dependent Diabetes Mellitus, or youth onset diabetes of maturity. With regards to its autoimmune basis and rapid requirement for insulin, it has been suggested that LADA is a slowly progressive form of type I DM. However, recent work has revealed genetic and immunological differences between LADA and type I DM. The heterogeneity of LADA has also led to the proposal of criteria for its diagnosis by the Immunology of Diabetes Society. Although many workers have advocated a clinically oriented approach for screening of LADA, there are no universally accepted criteria for autoantibody testing in adult onset diabetes. Following recent advances in immunomodulatory therapies in type I DM, the same strategy is being explored in LADA. This review deals with the contribution of the genetic, immunological and metabolic components involved in the pathophysiology of LADA and recent approaches in screening of this distinct but heterogeneous clinical entity. PMID: 21537436 [PubMed - in process] PMCID: PMC3083891 Free PMC Article

 

[benm024]

(sorry to break in before Neinstein).

Ben have you looked at PubMEd articles on LADA and GAD-65, yet?

I have combed through them -- although sometimes people on the boards still can point me to some -- and from what I can tell, there is a correlation between high titers and progression, as well as young age at detection, and progression.

If the units reported and test types are comparable, between Mayo Labs (which our practice uses for anitbody testing) and Quest Labs, mine went down after a year of low-carbing, if that provides any insight to you ...

So Linda you are insulin dependent at this point correct? What were your GAD #'s when diagnosed and what are they now. Also interesting you were able to get followup #'s. Our favorite endo told me he never tests twice. Once its positive at any level he believes its a waste of time to test again.

 

[foxl]

Ha -- I do wonder if my case influenced him? Hopefully it was that, because I am basically a fat ol' lady ... but I was in DKA and with thyroid autoimmune process should not have been overlooked for LADA. Even if it was the weekend ...

My first test was 5 - 6 mos after dx; I had been moderately low-carbing for a few weeks. It came back at 30. I was then referred back to the endo practice.

My second, when I switched endos within the practice, came back from Mayo at 3. I had then been low-carbing for about a year. He apparently did not like Quest labs for antibodies and shipped it to Mayo. He also ran TPO antibodies (thyroid) since he did not have a history in hand, and thyroid disease goes with LADA ... Which was huge, though I do not recall #s.

Two yrs and 3 mos out, I am more like insulin-ASSISTED, really. I use 9U Levemir at night to help with overnight numbers and DP. I added a low dose of Novolog in January, my A1c was not bad, 6.3. It was prescribed for dinner only, I use 3 - 4 U, but I do use it at lunch sometimes and to correct if I still have DP -- 1 or 2 U at a time. My doses are slowly creeping up, no real jolts in need. Yet.

My pharmacist actually called to ask if the prescription was a typo, because the dose is so low! And then got flustered ... ha!