Antibody tests - what do the results mean?

[Circuspony]

I've had results back for ICA and GAD and I've been told both are high.

Is there anywhere that shows averages, so I can see what 'high' actually means?

 

[catapillar]

Do you mean average for someone with out type 1? The 'average' standard/expected result for someone without type 1 is 0, nil, no antibodies.

If you are antibody positive, and diabetic, then congratulations, you are definitely type 1. That's all it tells you. It just confirms you have type 1. Nothing more useful than that.

I don't recall what units they were measured in, but I think my GAD test was >2000 5 years post diagnosis. All that tells me is, my immune system really hates beta cells.

 

[Kristin251]

Do you mean average for someone with out type 1? The 'average' standard/expected result for someone without type 1 is 0, nil, no antibodies.

If you are antibody positive, and diabetic, then congratulations, you are definitely type 1. That's all it tells you. It just confirms you have type 1. Nothing more useful than that.

I don't recall what units they were measured in, but I think my GAD test was >2000 5 years post diagnosis. All that tells me is, my immune system really hates beta cells.

Nicely said!

 

[Circuspony]

Surely there's a range or averages? Obviously I mean for type 1s.

 

[catapillar]

Surely there's a range or averages? Obviously I mean for type 1s.

I wouldn't have thought so. That's a very narrow range of people to try and determine an average result range, and what would be the point in determining the average or the range? It's a binary test. Either you are antibody positive, or you aren't. Yes or no. Being very antibody positive or only slightly antibody positive doesn't change the result, both are antibody positive.

 

[TheBigNewt]

I means your/our own immune systems chowed down on our beta Islet cells leading to diabetes.

 

[Circuspony]

I wouldn't have thought so. That's a very narrow range of people to try and determine an average result range, and what would be the point in determining the average or the range? It's a binary test. Either you are antibody positive, or you aren't. Yes or no. Being very antibody positive or only slightly antibody positive doesn't change the result, both are antibody positive.

Yes - but the studies I've read so far on line seem to indicate that at a certain level of antibodies you are in the preliminary stages of type 1. Those stages are where they are focusing efforts to try and protect the beta cells and there are a number of trials in play. What I can't get a grip on is when those level of antibodies are the 'too late, you're stuffed' stage. Its also very different progression between children and adults.

But I've got a consultant visit next week to see if I'm suitable for a drug they are trialling, so will fire questions in their direction.

 

[TheBigNewt]

I've had results back for ICA and GAD and I've been told both are high.

High probably means you're a confirmed Type 1, like the moderator said. Any study to mitigate the formation of anti islet cell antibody effect with the goal of preventing diabetes from manifesting itself in someone would likely involve taking a drug that inhibits the person's immune system somehow. Don't know about you but I'll take my insulin any time over that!

 

[Circuspony]

I am confirmed type 1 now & yes any drug would be one that interfers with the immune system. I suppose I take a different view in that the insulin I now inject (which I am very grateful exists!) can never completely replicate the work my pancreas does. If it did I wouldn't have appointments about eyes, feet, cholesterol etc etc. The longer I can keep those beta cells ticking along the better it is for all my other organs.

 

[catapillar]

I am confirmed type 1 now & yes any drug would be one that interfers with the immune system. I suppose I take a different view in that the insulin I now inject (which I am very grateful exists!) can never completely replicate the work my pancreas does. If it did I wouldn't have appointments about eyes, feet, cholesterol etc etc. The longer I can keep those beta cells ticking along the better it is for all my other organs.

Usually trials looking at whether medication can prolong beta cell life are limited to very newly diagnosed type 1s (ie diagnosed in the last 6 months) rather than any antibody limit. But the trials you are looking at will have their own eligibility criteria so you are best off asking whoever where ever is running the trials what their eligibility criteria are.

 

[Circuspony]

Diagnosed 8 weeks ago - they contacted me!!

 

[TheBigNewt]

Usually trials looking at whether medication can prolong beta cell life are limited to very newly diagnosed type 1s (ie diagnosed in the last 6 months) rather than any antibody limit. But the trials you are looking at will have their own eligibility criteria so you are best off asking whoever where ever is running the trials what their eligibility criteria are.

A fairly simple test that I have never heard anyone refer to on this forum is a serum insulin level. Think about it: what do you really want to know about a new diabetic who's having problems getting low taking their insulin. You hear all about "the honeymoon period" and antibody levels and I never hear about anyone determining how much freaking insulin the person has in their bloodstream. Heck they did one on me in 1985 when I had a hypoglycemic seizure and ended up in the hospital (the only time I've been hospitalized for diabetes). And if you have no insulin in your system, quit worrying about antibody levels and all that stuff.

 

[lou258]

Diagnosed 8 weeks ago - they contacted me!!

Is this the abatacept trial at guys? I went for screening last week

 

[Circuspony]

That's the one. Are you going ahead with it?

 

[TheBigNewt]

Diagnosed 8 weeks ago - they contacted me!!

What you want to find out are the "materials and methods" of the proposed study, as well as the "opening statement" they start out with that outlines the purpose of the study, and how they propose to prove/disprove their hypothesis. For instance if they want to compare the results of this drug in people with high antibody titers (like you) with people who have not much antibody present to see if those people get some benefit and people like you do not you might think twice about exposing yourself to whatever risk is associated with the drug. You'd sort of be a member of the "control group" as it were, as opposed to the people with new diabetes who have very low antibody levels that might have a better chance of responding to a drug (if it works and doesn't mess you up) than you.

 

[lou258]

That's the one. Are you going ahead with it?

Waiting to see if I’m suitable as initial diagnosis antibodies test was negative. I know they test for a wider range of antibodies in this screening and I’ll need to be positive for two to be eligible.
If i am eligible then I think I will. Given the drug is already licensed and in use for arthritis treatment it seems it should be quite safe from a side effects perspective. And getting down to guys for the blood tests shouldn’t be too bad, as Altho I’m in Yorkshire I work at least one day in London most weeks.
What are your initial thoughts?

 

[abdulrahmanbakr]

From what my Endo said.... The level of antibodies means nothing.... Just being positive or negative is the thing here.... Having higher or lower antibodies doesn't mean your case is more or less severe.

 

[TheBigNewt]

Waiting to see if I’m suitable as initial diagnosis antibodies test was negative. I know they test for a wider range of antibodies in this screening and I’ll need to be positive for two to be eligible.
If i am eligible then I think I will. Given the drug is already licensed and in use for arthritis treatment it seems it should be quite safe from a side effects perspective. And getting down to guys for the blood tests shouldn’t be too bad, as Altho I’m in Yorkshire I work at least one day in London most weeks.
What are your initial thoughts?

If it were me I'd of course find out what the drug is. Infusion or oral? And of course the potential side effects. But more importantly how is the study being conducted? How many groups are the patients being divided into, and what is the decision based on that determines which group you are put into? What do they hope to prove with this study? Do they expect different groups to respond differently? How will that be proven or disproven (in other words what diabetes things do they measure/keep track of while you are in the study)? How long is it? Seriously, just getting accepted into a study doesn't mean a whole lot in and of itself. The ingredients of the study before it starts are pretty important (especially since it's you who are the guinea pig lol).

 

[Lally123]

If it were me I'd of course find out what the drug is. Infusion or oral? And of course the potential side effects. But more importantly how is the study being conducted? How many groups are the patients being divided into, and what is the decision based on that determines which group you are put into? What do they hope to prove with this study? Do they expect different groups to respond differently? How will that be proven or disproven (in other words what diabetes things do they measure/keep track of while you are in the study)? How long is it? Seriously, just getting accepted into a study doesn't mean a whole lot in and of itself. The ingredients of the study before it starts are pretty important (especially since it's you who are the guinea pig lol).

Just to add, and I know nothing about abatacept trials in type 1, but I work in rheumatology and we use abatacept on some.of our patients. It is very very safe and has an excellent side effect profile. We use weekly injections or 4 weekly infusions, it won't be available in oral form. Very interested in it's wider trials for type 1 though especially for my patients who are unlucky enough to habe both rheumatoid and type 1. I am going to do some reading! Good luck with the trial @Circuspony will be interested to see how you get on if you are açcepted

 

[lou258]

Just to add, and I know nothing about abatacept trials in type 1, but I work in rheumatology and we use abatacept on some.of our patients. It is very very safe and has an excellent side effect profile. We use weekly injections or 4 weekly infusions, it won't be available in oral form. Very interested in it's wider trials for type 1 though especially for my patients who are unlucky enough to habe both rheumatoid and type 1. I am going to do some reading! Good luck with the trial @Circuspony will be interested to see how you get on if you are açcepted

This is a smaller trial following studies in the USA (I think!) a couple of years ago that showed promising results. 13 subjects for 6months, no placebo. Weekly injections with 3monthly blood checks for a year. As mentioned concept being that this could block the antibodies attacks against the remaining beta cells following first diagnosis (so only suitable within 100 days of diagnosis) - protecting the remaining beta cells and prolonging the honeymoon period (less insulin, easier to manage). The guys team want to look in particular at how the drug works and impact on immune system.
Hope this is of use/interest!