C-Peptide test and GAD65 Test results in need help interpreting them

[MsKD 16]

I eat no carbs for breakfast--I rotate between bacon and eggs and bacon and egg whites. In talking with other T1s, they explained that sometimes the body will convert proteins into carbs and bump up the BGs.

 

For instance, for lunch once I check my BG and it was in the mid 90s and I was desperately hungry so I ordered a small 6 oz. steak at a local restaurant with small tossed salad (vinegar dressing) and steamed broccoli. Brought it back to the office and ate at my desk a with a bottled water. I didn't even finish all my meal--only ate a 1/3 of the steak, all the salad, and some of the broccoli. Checked my BGs again two hours later and it had jumped to 164.

 

So to keep my BG steady for lunch now, I eat a boiled egg and a couple of cubes of cheese and nuts. It stays around 110. Or a small tossed salad only. If I add a cup of soup or broccoli or spinach it will go up to 130, which I guess is o.k. But the steroids also make me have hypos so I have to have glucose tabs on me at all times so it's a vicious cycle.

 

Since 2013 (my diagnosis) I've lost about 68 pounds. My rheumy is worried but my endo doesn't seemed to be phased and keeps saying to lose more. Yes, the steroids ballooned me up, but at the same time, I'm not trying to lose this weight. At first I was happy, that everyone was saying how the weight loss looked good, but now the comments are like "are you o.k.? Don't you think you've lost enough? Aren't you losing too fast?" I'm not trying to lose it, it's just happening.

 

Blood tests show no infections, only HIGH inflammation. My rheumy is doing everything he can for my RA. I have to take my medications or else I'll end up in the hospital due to my RA. Maybe the new endo will give me some direction since my current one hasn't given me any direction other than contact him if my sugar level linger above 200+ for more than a couple of days. As long as my BGs are below 200, all is good.

[jwags 9,219]

Things other than food will spike our bgs. Sometimes we make assumptions that it must be the breakfast we ate when it is something totally different. If I don't eat breakfast I spike 60 points. If I eat something small, I rarely spike or come down. Many of us still produce insulin but it takes awhile. It takes a lot of trial and error to figure out what works. If you don't mind me asking, what do you weigh now? My weight loss stopped at about 115. The only time I went below that was when I was on statins. the ststins destroyed my muscle fiber so I lost weight. So your weight loss could be from another med. My dad was on Prednosone for Temperal arteritis. He never gained weight, but lost as he aged. His bgs were in the 150-200 range. He was on Januvia because he refused to go on insulin.

[MsKD 16]

I was 145 (hypothyroid) when I started on prednisone back in 1996 and then sudden ballooned up to 318 due to a very severe flare in 2011 due to drug change to Acterma, now I'm down to 242 (just weighed from 252 earlier this month) and steadily losing on the average 2.5 to 3 lbs. a week without trying. I began losing weight (1-2 lbs/wk) prior to the diabetes diagnosis (8/2013) but the doctor didn't know why until I complained of "losing time". Clothing wise I was a size 14 originally in '96 and at my largest I was a 26, now I'm 16/18 and the clothes are too big. My cardiologist said a lot of the "weight" was fluid retention in my legs and feet which swelled from a size 8 to a size 10. But, now, my rheumy is worried that I'm losing muscle and bone with this "weight loss" since my Vitamin D is so low and I'm taking 5,000 iu a day to maintain my Vit D levels.

 

I'd black out and realize I'd went to sleep at my desk for 20-30 minutes. My assistant said once I was staring right at her like I was looking through her, and I didn't even answer when she called my name--it felt like I was asleep. I did it once on the couch with Mom and she was screaming at me to wake up--I didn't even hear her calling me--I didn't even know I was asleep. The sleepy spells usually happen at the 140 BGs and higher.

 

I get my RA infusions every month and I'm weighing with roughly a 10 - 15 lbs. loss each month. It's driving the infusion nurse crazy. The prednisone they give in my infusion line plus the prednisone I'm taking by mouth I plus the Remicade I shouldn't be losing weight. But I'm not complaining about the weight loss...I really would like to be back to my old weight of 145.

 

My shape is evenly distributed--top and bottom heavy.  A little fuller in the middle when I was fatter, but losing the weight in the middle. I look good in the old school shirtdress, A-line '50s dresses--I have that body type. The odd thing is the more weight I'm losing, the less control I have on my diabetes. Weird. :-(

 

When I was chunkier (260ish) it seemed like my BGs more controlled. Now the more weight I'm losing, the more my BGs are increasing and the more my RA is out of control.

[jwags 9,219]

So,,it seems you do have more weight to lose to get bsck to your original weight. It is importsnt as you lose weight to domweightnbesring exercise to preserve muscle. The older we get the harder this is. When I was on statins I lost tons of weight and muscle. My muscles were hanging off my body. It has taken 5 years of exercise to recover about 1/2 those muscles. I also use a powdered product in my tea called Great Lakes Collagen. It is made from the bones of grass fed cows and provides the body with amino acids to strengthen muscle and ligaments. Usually if you have unexplained weight loss from diabetes bgs are much higher than yours. Your GAD score is fairly low, still within normal. It could still develop into LADA at some point if the autoimmune attack progresses. right now I think your bgs in the mid 100's are probably from inflamation from your RA, since your C peptide is still high.

[Stl-T2 1,995]

I think I agree with Mike that you are going to need to repeat that GAD65 antibody test.  And maybe get some of the other less common antibodies tested, too.

 

You've got a heck of a lot on your plate, but to me it sounds like you are being a real trooper dealing with it.  Keep up the good work!

[fjordscape 346]

The simple answers are: yes, baffling as it sounds, some Type 2's have antibodies; I suppose you could be either LADA or ordinary Type 1 (somebody with a better understanding might be able to correct me on that). 

 

I hope you'll let us know how the recent consultation turned out. 

 

O.k. everyone, I just got my test results back in my inbox. I was only able to get three done at this particular lab--C-Peptide, Serum; GAD-65 Autoantibody; Antipancreatic Islet Cells. [. . .]

 

GAD-65 - Result = 1.5; (Range (0.0 - 1.5) --- my understanding is that patients with type 1 diabetes mellitus usually have antibody levels between 0.03 and 20 nmol/L. Can T2 also have GAD antibody levels?

 

[. . .]

 

So am I just T2 based on the C-Peptide or LADA with the GAD result thrown in?

 

 

This article might help. It has a ton of research findings. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2809976/ See especially Figure 1. But actually, the article reveals that there is a great smear of types of diabetes. 

 

The conventional wisdom on diabetes classification is as follows. There is either autoimmune diabetes or nonautoimmune. Type 1 and LADA are the former, T2D is the latter. If there are autoantibodies, you have the autoimmune type, and if you are diagnosed T2D, there will be no antibodies. LADA can be distinguished from "classic" T1D by different antibody profiles and a delay of several years before you need insulin. This article by Dr. Leslie, and others I've found this week, explains that these simple categorical statements are not the reality. For example, the antibody levels of people with LADA often fade after 5 years to the point they are considered antibody negative. 

 

I'm trying to make sense of it all because I have a set of metabolic indicators that doesn't seem to match any of the categories or the mechanisms of disease progression that the conventional wisdom offers. 

[MsKD 16]

Thanks for the article link fjordscape. Basically the second opinion was a bust because he didn't want to go up against my endocrinologist. At first he said yes he would do the antibody testing, then he backed out and decided he would just request more of the same tests since my endo hasn't run any tests since Nov. 14. He did say that I should be checking my BGs more than once a day that my endo requires and that I should be on insulin as a first line of treatment based on my profile. Also, he thinks I'm taking too much hypothyroid medication.

 

So we shall see what the blood tests reveal. He wants to see me in 2 weeks to review the lab results and start a treatment plan.

[fjordscape 346]

Also, he thinks I'm taking too much hypothyroid medication.

 

That reminds me that I've had mild to moderate symptoms of hypothyroidism all my life, but thyroid hormone levels are normal. In fact, there is a recognized genetic ailment, thyroid hormone resistance syndrome (TRS). It's hard to confirm because there are many single gene defects that are recognized to cause TRS. I want to get examined and tested for TRS, but I don't have the options to do so. Doctors all tell me I'm fine. 

[fjordscape 346]

Glyburide. It's a sulfonylurea, and I keep seeing that that class of drugs is old hat. 

 

I'd like to pass along some more links. 

 

This young woman blogger is a nurse with both S-RA and LADA. Her Dec. 11, 2013 post is all about coordinating with multiple doctors. https://facetsof livingwithra.wordpress.com/tag/sero-negative-rheumatoid-arthritis/ (Mischelle: "primary care is vital") 

 

Fourlanos. 2006. A clinical screening tool identifies autoimmune diabetes in adults. http://care.diabetesjournals.org/content/29/5/970.full

Lists 5 criteria that increase the likelihood that one's diabetes is LADA. e.g., incidence before age 50. This screening set could be a little frustrating, because the criteria are not conclusive. LADA can emerge after age 50. 

 

This brief article by Smith-Marsh, ca. 2014 acquainted me with HLA complexes and that autoimmune diseases need to be triggered into existence. http://endocrineweb.com/conditions/type-1-diabetes/type-1-diabetes-causes  

 

This article is speculative and academic. Wang. 2013. The relationship between type 2 diabetes mellitus and related thyroid diseases. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3647563/ 

[MsKD 16]

Thanks for the info fjordscape. Both endos think because I am not thin that I cannot be Lada but I have read that overweight and obese type 1s do exist. That's what I like about my rheumy---he says in the real world people's bodies don't follow the textbooks.

[jwags 9,219]

There is a sterotype that all type 2's are overweight and all Type 1's are thin. These are just sterotypes and not reality, Many overwight people are mis dx'd as tyoe 2's because of stupidity of doctors.

[MsKD 16]

There is a sterotype that all type 2's are overweight and all Type 1's are thin. These are just sterotypes and not reality, Many overwight people are mis dx'd as tyoe 2's because of stupidity of doctors.

So at what point do doctors throw out the textbook stereotypes, take off the blinders, and really use their knowledge to diagnose the patient without all the trial and error of "this medication didn't work, so let's try this, blah, blah, blah..."? I watched as my mom suffered through strings of diabetic pills and getting sicker and being accused of non-compliance until one doctor said "she needs insulin". And that was my happenstance while she was in the hospital after knee surgery and her regular endo was out of town. When her endo returned he was royally p!$$ed. But mom said she felt like a brand new woman when she started insulin--so much more energy, like someone turned on a light switch. No more walking in a fog.

[jwags 9,219]

So at what point do doctors throw out the textbook stereotypes, take off the blinders, and really use their knowledge to diagnose the patient without all the trial and error of "this medication didn't work, so let's try this, blah, blah, blah..."? I watched as my mom suffered through strings of diabetic pills and getting sicker and being accused of non-compliance until one doctor said "she needs insulin". And that was my happenstance while she was in the hospital after knee surgery and her regular endo was out of town. When her endo returned he was royally p!$$ed. But mom said she felt like a brand new woman when she started insulin--so much more energy, like someone turned on a light switch. No more walking in a fog.

I think the patient has to do their own research and fight for a dx. I have asked if I should be tested for LADA and my doctors won't do it. I am fairly thin and very athletic but still dx'd as a type 2. Many type 2's use insulin, but that doesn't make them a type 1. There are hundreds of things that cause diabetes and I really believe there may be combinations of the two types.

[MsKD 16]

There are hundreds of things that cause diabetes and I really believe there may be combinations of the two types.

 

I think that's what doctors are afraid to dig in and admit that there are multiple combinations with genetics and it's not all lifestyle. When I was following my rheumy's orders of just doing mild stretching and light exercise for 15 minutes two times a week my BGs were really good and on point--almost normal. Then I followed my end who was like you need to exercise every day at least 30 minutes a day which has caused my BGs to spike. The increased exercise has also has caused me to gain weight--which is probably inflammatory swelling.

[GretchO 197]

Both endos think because I am not thin that I cannot be Lada but I have read that overweight and obese type 1s do exist.

 

Rapid weight loss in a short period of time with no effort is an indication of T1. I'd lost about 30 pounds eating huge quantities and constantly. There are overweight Type 1s but I think it's less common at diagnosis.

[Stl-T2 1,995]

Unexplained weight loss can also be a symptom of Type 2, that's a symptom of insulin insufficiency but doesn't rule out one cause or the other (lack of production or lack of ability to utilize).   I'm not sure how precisely "rapid" weight loss is defined.  A full blown T1 would lose weight faster, I'm sure, but I doubt weight loss can differentiate a severe T2 and a slow onset LADA.   

[MsKD 16]

I think that's what doctors are afraid to dig in and admit that there are multiple combinations with genetics and it's not all lifestyle. When I was following my rheumy's orders of just doing mild stretching and light exercise for 15 minutes two times a week my BGs were really good and on point--almost normal. Then I followed my end who was like you need to exercise every day at least 30 minutes a day which has caused my BGs to spike. The increased exercise has also has caused me to gain weight--which is probably inflammatory swelling.

He also wanted me to cut back on my steroids for my RA which is what keeps down the inflammation.  I've always wondered since I've been diagnosed with diabetes--if the RA impacts the diabetes or if the diabetes impacts the RA or if both equally impacts the other. None of the doctors can answer that question for me. I know inflammation in the body is bad for diabetes and your heart.

[jwags 9,219]

I think that's what doctors are afraid to dig in and admit that there are multiple combinations with genetics and it's not all lifestyle. When I was following my rheumy's orders of just doing mild stretching and light exercise for 15 minutes two times a week my BGs were really good and on point--almost normal. Then I followed my end who was like you need to exercise every day at least 30 minutes a day which has caused my BGs to spike. The increased exercise has also has caused me to gain weight--which is probably inflammatory swelling.

On days I exercise more intensely bgs are always higher. On days I skip exercise and I am a couch potato they are lower. But exercise is good for my arthritis to keep the blood flowing. So I keep doing it.

[RobinP 33]

Thanks for the info fjordscape. Both endos think because I am not thin that I cannot be Lada but I have read that overweight and obese type 1s do exist. That's what I like about my rheumy---he says in the real world people's bodies don't follow the textbooks.

 

There is a sterotype that all type 2's are overweight and all Type 1's are thin. These are just sterotypes and not reality, Many overwight people are mis dx'd as tyoe 2's because of stupidity of doctors.

 

I'm one of the fat type 1's. 178 lbs right now. I was treated as type 2 at diagnosis in 09', even though I presented with very high bg, weight loss, etc...and none of the type 2 drugs worked. Pcp never offered to check for type 1, so I found an endo who did. Now to work on losing this weight.

[algarve7 16]

GAD-65 - Result = 1.5; (Range (0.0 - 1.5) --- my understanding is that patients with type 1 diabetes mellitus usually have antibody levels between 0.03 and 20 nmol/L. Can T2 also have GAD antibody levels?

 

Antipancreatic Islet Cells Result = Negative; (Range (Neg: <1:1)

 

As far as I know the units for GAD is U/ml. A GAD of 1.5 is within the normal range (range 0.0 - 1.5 U/ml), so this is a negative result. Your other antibody test, is also negative and you have high C-Peptide indicating lots of insulin. It suggests you don't have autoimmune diabetes from these results.

 

I would take lots of natural anti-inflammatory herbs and supplements to calm down your RA so you don't need to be on all that steroid which is bad news and probably making your BG go high. Have a look at Turmeric/Curcumin, Ginger, liquid Cod Liver Oil.

 

Probably RA has an infectious component, so we actually need a strong immune system to overcome the disease and steroid will weaken the immune system, so it only treats the symptoms and not the cause of the problem.

 

[jwags 9,219]

I had an GAD test last fall. My resukts said anything under 5 was normal. Mine just said <5, Normal. My c-peptide was 1.1 which was normal too.

[algarve7 16]

Previously my lab was using the RIA method for measuring GAD antibodies, with a normal range of < 1.5 U/ml. The new GAD measurement method they are using now is the EIA method with a reference range < 5.0 U/ml. So you need to go by the reference range determined by the lab for their test method.

 

If you measure GAD again later and you find it climbing above the reference range, then that would indicate you have autoimmune diabetes.

[JohnJason 15]

I haven't posted in a long time 'cause everything has been cool. I am 72 years old and was first diagnosed with diabetes about 30 years ago. For the first five years or so I went to various doctors who had me on glyburide, then glyburide plus metformin. At one time a doctor had me try rosiglitazone at the maximum dosage for a month, but it had zero effect on my BG levels, so we dropped it. Shortly thereafter I asked my (then) endocrinologist "instead of taking drugs to force my pancreas to produce more insulin, why don't I supplement its output by adding insulin?" She agreed and quickly wrote me a script for Humalog, plus gave me some more literature about different kinds of insulin and how they work.

 

It is now 25 years later and throughout that time my A1cs have almost always been in the "non-diabetic" range, although sometimes just barely, and I managed it all with just N and R. Happily I have absolutely no end-stage problems like neuropathy, retinopathy, etc. But having said that I hasten to add that I do have a recurring problem with the N that I take at bedtime to control my dawn effect, i.e., about once a month I wake up in the middle of the night and my BG is in the 40s - so low that I am hallucinating. Of course I keep sugar candy by the bed, so I can get the BG up, but it still messes me up. Whenever this happens I know that I am going to be worthless for any serious work the next day.

 

Because of this I have long been considering a pump. I remember when pumps first appeared. I checked them out at the time and discarded the idea of a pump because it makes your life so regimented - i.e., at the time it is programmed it is going to inject the insulin and you had better get food into yourself or you're going to be in trouble. I much prefer my breezy lifestyle where I can eat what I want, how much I want, and most importantly when I want. I just have to inject an appropriate amount and type of insulin to cover what I am going to eat. But I recently decided to check out pumps again and I am heartened to see that there are now pumps that are controlled by a continuous BG monitor. This sounds great to me - effectively an artificial pancreas. More importantly, it would eliminate my frequent episodes of hypoglycemia.

 

For the past 25 years I have always just paid for medical care out of pocket, although since becoming eligible for Medicare (US) I have used that (A and B, but nothing more) for the things that it will pay for. That means I have been paying for insulin myself. This is not as bad as it sounds because the local Walmart will sell me Novolin R, N, and 70/30 for under $25 a vial. However, for reasons unrelated to diabetes I decided a couple months ago to sign up for the Kaiser Permanente Senior Advantage plan. And as a result I now have issues relating to what kind of diabetic I am because my new Kaiser primary care physician says Kaiser will not pay for a pump or even for Humalog unless I am Type 1. In fact, he referred me to the Endocrinology Department and they rejected the referral. It's like "he's old, he's 15-20 kg overweight, therefore he's Type 2." Bah.

 

Now, about 15 years ago I had a couple of C-peptide tests done, and on each test I was just a bit below the bottom of the normal range. And now (October 21) I had my new Kaiser primary care physician order a new C-peptide test, to which he added a GAD-65 Ab. The results were

 

C-peptide 0.44 ng/ml (normal 0.80 - 3.85 ng/ml)

GAD-65 Ab <5 IU/ml (normal <5 IU/ml)

 

I asked my good friend Mr. Google to explain the GAD-65 Ab test to me, but he failed. In the meantime another internet friend, Mrs. Wikipedia, said that injecting exogenous insulin could suppress endogenous production, resulting in a low C-peptide result. Of course I also asked my new Kaiser PCP, and he said that the results were not indicative of Type 1 diabetes. Reading all the previous posts in this thread has also not added clarification.

 

I am pretty confused by all this. Comments and suggestions would be welcome!

[Fraser 7,379]

I am aT2 with Kaiser Medicare advantage.

On the pump your issue is not really with Kaiser approving it, it's Medicare approving and paying for it. Check out post on this site on Medicare and pumps and medicare's requirements. It is really complicate.

 

Now to Kaiser, I forced them to run C peptide , because I wanted to know what it was now verses later as if it comes out.

They did pay for the first test, but told me I did not need to fast. Which I beleive is wrong. .. I have also heard using insulin changes the number.

So I went to Quest directly gut a quote for a non reimbursed test (which was less) and printed instructions ( which included fasting.)

My results from quest were exactly mid range. Non fasting was high.

All that just means if you want an independent test you pay for it, but Kaiser can right the script.

 

But look at other topics here, to verify if Medicsre would approve a pump your case.

Not sure that helped you any?

[JohnJason 15]

On the pump your issue is not really with Kaiser approving it, it's Medicare approving and paying for it. Check out post on this site on Medicare and pumps and medicare's requirements. It is really complicate.

 

Thanks for the comment. You got me to spend most of today researching Medicare rules for pumps. You were right when you said it's complicated, but I think I qualify. That is, I understand that the current rules require a C-peptide of less than 110% of the lab's lower limit for normal. My lab report said that it's lower limit for normal was 0.8 ng/ml and 110% of that would be 0.88 ng/ml, where my results were only 0.44 ng/ml. Also, I looked at the report again just now and it was a fasting blood draw. I still don't understand the GAD-65 Ab test, but from what I read, Medicare doesn't even look at it.

 

While reading about Medicare requirements and how they arrived at them I note that "frequent hypoglycemic episodes" is frequently mentioned in the literature, and that is the main reason I am considering a pump. A couple weeks ago I woke up at 2 am and I was not only hallucinating, but I also had difficulty standing up. My bedroom is upstairs so I decided I needed to get to the kitchen downstairs, and I fell most of the way down the stairs. Fortunately I ended up with just a lot of bruises, but it could have been a lot worse. Being severely hypoglycemic is dangerous.

 

Tomorrow is Thanksgiving, so Kaiser and most of the US world is closed. That will give me time to think about how to proceed. I am considering going out of the Kaiser system to find an endocrinologist, since Kaiser's endocrinologists won't talk to me. But I don't know how Kaiser would react if the outside endocrinologist prescribes a pump.