I am so far, after 30+ years of diabetes still not sure what I am, other than not a typical type 1 or typical type2. My label has changed a several times.
My wierd diabetes has since 1,5-2 yrs post hospitalization for diabetes, been treated more like a type-1. Currently on MDI, Lantus + Humalog and was on NPH+Reg for decades.
Trying to get antibody testing is a challenge, I am already on the GOLD STD as my endo put it, and such testing would not imporve my treatment routine. I have asked a few times to get tested to no avail.
MY question is would even antibody testing settle the issue? I have heard of diabetics getting the antibody testing only to have test results be in a gray area, or not sure. Is there a chart or standard that would say if the reuslts are from X-X2 my diabetes is w/o question autoimmune, and say Y-Y2 is a gray area, maybe / probable and if the results is say below z then I do not have an anutoimmune component?
Would antibody testing results be interpreted one way by one doc/endo and differently bay another doc/endo?
Is there an accepted standard to interpreting antibody testing or is it more subjective or at the whim of docs descretion?
Gomer......... Loaded with questions
What got me reACTIVE on this question - issue was my last GP visit. He made a remark about me being TYPE-2. I held back but I almost SNAPPED back at him. It has happened before. The first time was when I was hospitalized after a few sips of coke one eveinging. I had been given a clean bill of health by a Co doc I had seen that same morning. When the Co doc came to see me, he came in yelling at me for not hainving my blood sugar under control. My boss at work had asked me to go becuase it was obvious to everyone, except my reg fam doc, who REFUSED to see me for follow-up of a sore throat, something was WRONG.
I get tired of some of the rehetoric, even worse from docs. When I started isulin I was kinda skinny, now I have some flesh on my bones, but my weight is not bad.
MY basal insulin is 11 units twice a day and humalog carb ratio runs 1 unit per 12 to 15grams of carbs. More typical of type-1 than type-2. My diabetes also has not progressed like a typical type-2. Actually my diabetes is easier and more stable in recent years than ever. Usually I am not keytone prone, but have been on occasion. Sometimes my system (beta cells) are totally shut down, last time it lasted for a couple years, and sometimes I at least have a little natural insulin. Wierd to say the least.
I have been thru so much crap, bad times with my diabetes, especially in the early years, and blamed for things I had NO control over.
EITHER way, if after testing, if done, if it comes back positive for antibodies enough to make a firm type-1, then that would mean I would QUALIFY for a better level fo diabetes care at the VA, at least quiet some of the stereotype B crap.
If they say NO it can not be type-1 and must be type-2, then I am going to press for service connection as a type-2. (even if I have to file the claim by myself)
Actualy I think I would prefer to get a type-1 label.
I’m not sure if the measurements in Canada are different the way they are for bgs. I don’t remember what the units were, but I’m pretty sure it was a reference range of 1-6 normal, mine was 28. I’ve read elsewhere that you get a >30 at the high end when they stop counting. I’m going to see my endo on the 20th and get a print out of all my blood work. I’ll update when I get it. But it sounds pretty definitive. I think the problem is that there are three types of antibodies they can test for that are associated with T1 and sometimes they only test for one of them.
Kelly, that there are THREE types of antibodies associated with type-1 is also my understanding.
One possable problem right now is I am NOT in total shutdown. Would have been better IMO to have done this testing WHILE I was shutdown. Same goes for C-peptide, I know from decades of experience it seem to vary quite a bit. A C-peptide give a measure of natural insulin production, NOT type, unless its very high, indicating insulin resistance, so it might be of some limited value.
The more I actually KNOW, the more I know I don’t KNOW…
There are four antibodies in the complete diabetes autoimmune panel (Antipancreatic islet cells, IA 2 autoantibodies, Insulin autoantibodies, GAD autoantibodies). There is no definitive test for Autoimmune T1 (T1a), the numbers I have heard are that 85-90% of T1a diagnosed patients are positive for one or more of the antibody tests.
The c-peptide measure production of insulin (phase II response), but has little value unless the test is performed with a glucose challenge. And even then tells you little about actual remaining beta cell function.
In the US, it can make a huge difference obtaining a T1a diagnosis, you can be totally shut out of insurance coverage for insulin pumps and CGMS and have a terrible time getting appropriate treatment. Kellys stories of misdiagnosis also highlight similar problems in Canada.
You can order the full diabetes type 1 panel with all four tests for $300 from privatemdlabs.com. In the US, you have the “right” to order tests as a patient (you can’t prescribe). However, many diagnostic services refuse to serve patients, maintaining a doctors monopoly on tests.
The whole diagnosis thing with T1a is a mess. There is supposedly an ADA and WHO diagnositic criteria, but in fact it does not exist, best as I can tell. The whole T1a diagnosis is basically a judgement call. As such, you can also “shop” a diagnosis. Chances are 9 times out of 10, you walk up to some random doctor, tell him you lost your records and ask for a diagnosis, tell him your story and bam, you are given a T1a diagnosis.
I MESS…yep I agree!
I hate doctor shopping…but had a couple times. In 2007 I had 4 cataracts, a diabets and reg in each eye. My long time eye doc GOMERd me, becuase I was not seeing the ENDO he wanted me seeing, but on the other ahnd he would NOT give me a referal to that endo either. I had to SHOP to get a doc to do the cataract surgery I needed. Eye doc #3 in 6 mos was GREAT and did my sugeries.
I had to doctor shop when my kidney function was declinning as well. I aske one PCP for a 24hr test, he said NO! Got a referal from another pcp who did order the test and off to a NEPH. I was still on a decline and heading toward CKD-4 when I pulled the plug on him. A new neph did better for a while, then on the skids again, and yet another NEPH. Now my CKD is stable with eGFRs in the 40s and doing better.
I ran into similar problems with NEUROs, First one said did not matter if I hasd MS or not, he would not treat it if it was. Next 2 neuros did not want to bother was a 60something, too old for drug trials etc, and usually MS rears its ugly head durring a eperson’s 30s or 40s, (but can happen almost any age). Last chance was the VA. I got a rare, very rare good doc who ordered the needed MRI and BINGO! Dx 'd with long standing CLASIC RRMS (and further testing confirmed the MS) nearly 25 years after the VA had sent me to the shrink dept for same Sx back int he 80s. The shrink said I was NOT nuts or depressed, just adamant something else was wrong.So back to General med clinic and NO followup on Sx.
I swear if airline industry operated like medicine, there would be NO need for airports!
GAD testing will be a sure thing as to diagnosis. I had an endo that said the same thing yours is saying. But I ultimately found one that not only agreed to the test – she actually thought it was important. And it is relevant information to have, once we found out I was T1 she knew to look for other autoimmune concerns and sure enough several were revealed, I personally always want to know the full facts. “Good enough” simply is not a satisfactory standard when it comes to your health.
One possable glitch is as follows;
I was in what I call TOTAL shut down for a couple years. where I am like any typical TYPE-1, NO natural insulin response. I have regained a little function and have a little response for the past year. My possable glitch, as I consider it, is my autoimmune activity level in general may be down and it might NOT show up now, but might/would ahve IF I could have gotten the testing done while I was shut down.
I know my autoimmune response varies, it affects my psorasis, which is not caused by, but is affected by autoimmune response levels. I AM getting a thyroid check, I hope complete with FREE T3 , FREE T4 and autoimmune tests…I HOPE? They did the draw last week, but will not know exactly which tests were done and the results. MY Multiple Sclerosis is autoimmune, and when I got that decades delayed testing and Dc, I THOUGHT they would at least question my diabetes label…so much for THINKing?
I had no signs of Celiac, but wanted to know if issues in my family were allergy or celiac, so I got genetic testing. I read up and saw that I had a common gene for LADA. My Endo and I had words, but he tested all my antibodies. The GAD antibodies plus the Celiac gene led to my dx. I have confirmed Hashimoto's, an elevated Anti-nuclear antibody test, and pervasive arthritis. I had Cushing's Syndrome prior to my dx of LADA - an adrenal tumor that was producing high levels of cortisol, a steroid. When they removed the tumor, I became LADA, so no one was expecting it. I still make some insulin now. I'm following Dr. Berstein and exercise, but now, exercise is not optional. My fasting glucose has always been normal, so that's why I had to be assertive. I went from an immuno-suppressed state to an autoimmune state.
I did a little research and found a road block...........
I am on Copaxone for my multiple sclerosis (autoimmune) and guess WHAT?
It's an immuneosuppressive, or suppresses antibody activity. So it would SEEM, to possability make any antibody testing mute, invalid or questionable at best.
So I guess ever geting a firm T1 or LADA determination is a pipe dream.
I just wanted to share my story with you. I saw a Rheumatologist for three years because I looked so autoimmune, but my tests were coming back unremarkable. As it turned out, I had an adrenal tumor cranking out huge amounts of cortisol which suppressed my autoimmune system on a cyclic basis. I hear your frustration. BTW, when they took the tumor out, I became LADA.
Well I just got back from my routine ENDO apt (and had lunch.)
His opinion is I CAN NOT be any type-1 (or LADA), that if I were, I would have had to start insulin when I had a problem when I was 14.
Personally I think there IS an autoimmune compnent to my diabetes, maybe mild but part of the picture. I THINK, that my diabetes varies depending on my systems autoimmune levels, hence the FlipFlops. MY insulin doses are more typical for a type-1, (if that is worth anything) My carb ratio is a whopping 1 unit per 12 to 15 grams of carbs.
Right now my situation is opposite of yours Shela, I am on Copaxone (an autoimmune suppresent) for my Multiple Sclerosis, so my autoimmune system is at leat a bit suppressed. Now here is a KICKER, my diabetes is better than ever. My theory is that the Copaxone is now suppressing my autoimmune response and may be at least partly responsable for my better easier diabetes control. Also because of the Copaxone any autoimmune testing may be futile anyway due to its suppressing my autoimmune system.
Gomer.. always a catch-22?