positive auto antibodies

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mommaangie Posted: Thu, Jun 4 2009 2:14 PM

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My daughter just got word that she has tested positive for 2 of the 4 auto antibodies related to type 1 diabetes. What do I do now? The hospital wants her to join a study group with a placebo controlled oral insulin. Is there currently anything boing done in the medical industry for this? What are doctors around the world and outside of my hospital giving their patients to prevent them from becoming diabetic? Any suggestions?  

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sp113 replied on Tue, Sep 8 2009 8:56 PM

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Hi Mommaangie!

Can you start out by telling us what geographic area you are in?

D

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Ron AKA replied on Tue, Sep 8 2009 11:31 PM

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sp113, are you the spammer that showed up on labour day weekend?

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sp113 replied on Wed, Sep 9 2009 1:42 AM

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NO! 

WHy would you even think that?

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mommaangie replied on Wed, Sep 9 2009 11:40 AM

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Kansas City USA

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sp113 replied on Wed, Sep 9 2009 10:53 PM

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I don't know if anyone here can give you a definitive answer.....but I seem to recall "preventative therapy" has not had any effect.  (I could be wrong.)

Do you have a good endocrinologist/Diabetes specialist that you trust/like?

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mommaangie replied on Wed, Sep 9 2009 11:29 PM

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I don't have. I go to the VA Hospital and I only see the nurses. They really don't know much more than I do about this issue. Actually, I'm suprised how little they know at all about it. They are used to treating the elderly veterans, so their level of treatment is minimal. They basicly told me they try to manage but other diseases and complications will kill their clients before the diabetes, so they just educate and manage. Sad but true. Most endocrinologists are not up to speed with the trials and results of new studies for a cure. There's no money in a cure. Only maintenance.  Preventing diabetes would put a lot of people out of business.

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sp113 replied on Thu, Sep 10 2009 1:40 AM

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Does going to the VA mean you cannot see a specialist?  Does it mean you have to see RN's and not MD's?

I will not agree general statement that "most endocrinologists are not up to speed with the trials and new studies for a cure". 

And I will not agree with your implication that there is some underlying financial reason they are delaying or postponing a cure "because it would put them out of business".

You seem to have some preset notions about diabetes care.  It would do you well to discard them and concentrate on getting proper care and guidance for your child.

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Joe replied on Thu, Sep 10 2009 8:57 AM

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mommaangie:

.... Most endocrinologists are not up to speed with the trials and results of new studies for a cure. ......

I'm not sure where you get your information but in my own experience with my Endocrinologist he is VERY much up to speed and is aware of very leading edge studies.

mommaangie:

....  There's no money in a cure. Only maintenance.  ....

Absurd!  There are Billions of $ for those who find a cure -- as well as Nobel prizes, fame, and fortune.   

mommaangie:

....  Preventing diabetes would put a lot of people out of business. ...

Well, it might put the snake oil salesmen and much of the alternative medicine BS slingers out of business but if you're talking about real medical professionals -- there's plenty of other disease to keep them busy.

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mommaangie replied on Thu, Sep 10 2009 8:13 PM

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That's great that YOU have had good endo's. I can't say the same for myself. I do see a RN mostly and she is GREAT. I had a horrible experience with 2 differnt high risk pregnancy doctors. They were treating many diabetics (primarily type 2) and I was astonished at the treatment they wanted me to do. The one wanted me to come off my pump and take 3 shots a day with meals and 1 long term in AM. The other wanted me to eat exactly the same meal for each meals 3 time daily for 8 months and take the exact same amount of insulin each time and then take a shot of lantis in the am & pm. Crazy. I was not the only person disturbed by this treatment. I had a diabetic medtronic rep that supplied me and taught me my pump at my visit with me and she got into an arguement with the Dr in the hallway. So,,,,, no I don't think all medical professionals are up to date with treatment or knowledge of type 1 diabetes. I wish I did have a doctor I could rely on and trust like you do. I am VERY proactive in my daughters health which is why I entered her in the trialnet studies to volunteer to do research and studies to find a cure. She is not sick but tested positive for the autoantibodies. Do you know what that means or what the risks are of her developing Diabetes? Do you know the percentage of children that test positive that actually get diabetes? Do you know what the studies are doing to find out how to prevent these autoantibodies from attacking the beta cells? I didn't ask for your oppinion.. please read my first post and answer my question if you know the answer. Obviously all of the posts are not necessary because not one person has addresses my question. Thanks anyhow 

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Joe replied on Fri, Sep 11 2009 8:20 AM

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mommaangie:

My daughter just got word that she has tested positive for 2 of the 4 auto antibodies related to type 1 diabetes. What do I do now? The hospital wants her to join a study group with a placebo controlled oral insulin. Is there currently anything boing done in the medical industry for this? What are doctors around the world and outside of my hospital giving their patients to prevent them from becoming diabetic? Any suggestions?  

Contact the hospitals with serious ongoing diabetes research: such as Mayo Clinic, Cleveland Clinic, Joslin, or Washington U in St. Louis. 

Bottom line suggestion: Find some good professionals that you trust and do what they say should be done.

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Joe replied on Fri, Sep 11 2009 8:23 AM

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mommaangie:

... please read my first post and answer my question if you know the answer. Obviously all of the posts are not necessary because not one person has addresses my question. Thanks anyhow 

Take your daughter to an Endo with a large practice.  An Endo that is also a PHD and doing research would be ideal IMHO [Mayo Clinic, Cleveland Clinic, Joslin, Washington U all come to mind] and is probably what you're looking for from your posting.  The objective is to find an Endo, RD, CDE's to be the core of your daughter's team [a PharmD would also be important to your team].  Ask around.  Ask the local ADA chapter.  Who do other medical professionals [nurses, pharmacists, etc] recommend?  Where would they take their kids? 

You are right -- not all Dr's are the sharpest knife in the drawer -- I went thru my first Dr (my wife was very unhappy with the level of care that I was getting from his practice) before finding mine [2nd time's a charm] - he was recommended by my Pharmacist.  At the time 11 years ago the only way to get into my Endo's practice was to volunteer for a medical trial -- which is what I did.

I have read studies regarding autoantibodies testing and rates of progression to T1 but being a T2 it wasn't something I bothered to bookmark -- but there is a TON of research going on in that area -- you can find many studies at PubMed [that's http://www.ncbi.nlm.nih.gov/PubMed/] as well as the medical library at a good research/teaching hospital and when you find a competent Endo (YES, they are out there) you can talk it over with him/her -- they can tell you what's relevant to your situation. 

With PubMed, for instance, you could start at http://www.ncbi.nlm.nih.gov/pubmed/16306337?dopt=Abstract "Natural history of Beta-cell function in type 1 diabetes" then click the "related articles" tab in the upper right and you'll find a list of 158+ hits.  That's a start -- get creative with your search string and you'll find much more.

Read everything in the Joslin on-line library then read Joslin's research. Read up on the research centers in the US at http://www.diabetescenters.org/ and if there's one or more near you go visit.  Attend classes.  Join the ADA if you haven't yet and sign up for some of their professional publications.  Sign up for a medical trial if available -- the medical oversight is generally intense which is good during a trial.

Bottom line suggestion: Find some good professionals that you trust and do what they say should be done.

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Ron AKA replied on Fri, Sep 11 2009 11:20 PM

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mommaangie:

My daughter just got word that she has tested positive for 2 of the 4 auto antibodies related to type 1 diabetes. What do I do now? The hospital wants her to join a study group with a placebo controlled oral insulin. Is there currently anything boing done in the medical industry for this? What are doctors around the world and outside of my hospital giving their patients to prevent them from becoming diabetic? Any suggestions?  

Don't want to be overly pessimistic, and I have delayed responding to this as I thought John Z from Joslin would have commented. In any case my recollection of studies I've seen is not positive in preventing type 1 diabetes. With type 2 caught at the pre-diabetes stage, there has been some success with metformin and diet/lifestyle changes.

For type 1 prevention here is the results of one study:

Type 1 Diabetes Prevention Trial

These trials are a bit dated now, so perhaps there have been some further developments. Not sure...

On your comments that doctors wanted you off the pump for pregnancy, you may have been caught in a regulatory approval issue. I don't believe that all of the newer insulins of the type usually used in pumps are formally approved for use during pregnancy. Some doctors will prescribe "off label" which means even when there is no FDA approval, and others will not. Perhaps that was the reason for the disagreements.

In my totally non professional opinion, I don't thing there would be any harm in participating in the study. You would have to watch for low BG of course. We can't give up on research to help everyone fight this disease.