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MsKD

Want to know if I'm T1.5 but doctors refuse to run tests

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MsKD

I was diagnosed with secondary diabetes due to medications (prednisone) for my Rheumatoid Arthritis in August 2013.

 

Both sides of my family has been diagnosed with Type 2 diabetes and autoimmune diseases. I was diagnosed at 14 with Graves Disease and received radioactive iodine resulting in hypothyroidism, at 26 I was diagnosed with severe allergies and Rheumatoid Arthritis. At 30 I was diagnosed with fibromyalgia. At 42 I was diagnosed with peripheral neuropathy due to RA. At 43 I was diagnosed with Type 2 secondary diabetes.

 

My endo put me on Metformin 2x/day (500 mg) and I almost died from nausea, upset stomach, cramping and diarrhea. I would spend most of the day in the bathroom as soon I as I ate. After a week, he finally changed me to Metformin ER and the same thing happened. Then he finally gave up and was mad cause I couldn't take Metformin.

 

He keeps telling me to diet and exercise and I've cut out all carbs (bread, pasta, rice, corn, potatoes) and my sugars are still yo-yoing.

 

I keep asking him for GAD, auto-antibody testing but he says he doesn't do it and it's not necessary. Then I asked him is he absolutely sure that I'm not Type 1 even though I have two other autoimmune diseases--thyroid (Graves) and Rheumatoid Arthritis. Furthermore, my Mom and her father couldn't tolerate diabetic pills--they had to be prescribed insulin when they were diagnosed. He said I was absolutely not Type 1--that I was Type 2 or secondary diabetes due to the prednisone that I take for my Rheumatoid Arthritis--which I have been taking since 1996. 

 

I am overweight due to the prednisone but since the diabetes diagnoses I have lost over 60 lbs and my rheumy is greatly concerned because he can no longer control my RA--I am having even more inflammation in my body. My endo says my diabetes is all my rheumy's fault if he would control my RA. He still refuses to acknowledge there maybe a connection between the two.

 

I've also asked my insurance company if any doctors in my area perform these tests and they notified me that none performed the antibody testing in my area.

 

So what do I have to do, wait until my pancreas' beta cells burn out or blood sugar levels skyrocket and then go to the ER to get correctly diagnosed?

 

Any thoughts and/or opinions would be greatly appreciated.

 

Thanks,

 

 

KD

 

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predb4

Perhaps you should research a doctor that could do this outside your insurance coverage if you can afford it.

 

It is your body.  Perhaps you can shift some money from your current expenses which are not absolutely necessary.

 

Tell your doctor and your insurance company that, if they are wrong, you plan to sue them.  Or better, get a lawyer to call and tell then that.

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NoraWI

Insist on insulin. It doesn't matter if you are T1 or T2. If you learn how to use insulin correctly, you will control your diabetes better. Insurance companies are a problem. Doctors who do the insurance companies' bidding are a problem. Work within the system if you can't get around it.

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naesatt

I believe you can go to your local lab and pay for any test out of pocket.....or maybe this isn;t the case anymore, or it is only for certain tests. When I was a phlebotomist, people used to come into the lab all the time and get drug test done on themselves to see if they would "pass" for employment, or parole tests...

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jwags

You can get your own lab tests run at most private labs. I think one of our members, Mike just did it. If your diabetes is from prednisone I doubt you are a type 1. My dad had prednisone induced diabetes from an autoimmune disease and he was still a type 2. Most docyors don't want to run the tests. I am a thin tyoe 2 and my doctor claimed the treatment is the same. Many type 2's use insulin. Also ask for a c peptide test.

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MsKD

Thank you all for the feedback. I've checked with both labs in my area and neither will do the necessary tests without doctor's orders which my doctor will not  provide. I am just concerned whether or not I have another autoimmune disease since I already have a medical history of three--Graves Disease, Allergies (food/environmental), and Rheumatoid Arthritis. The RA was discovered during an Allergy attack in my Allergist office. The Allergist was smart enough to run a blood panel and then referred me to a Rheumatologist.

 

But if there is no point in pushing the issue of antibody testing, I should just concentrate on trying to control my RA which has never  been under control for the past 20 years.

 

Thanks everyone for your help.

 

kd

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ant hill

I would see another doctor who will do tests as that's what you want!!!

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miketurco

I believe you can go to your local lab and pay for any test out of pocket.....or maybe this isn;t the case anymore, or it is only for certain tests. When I was a phlebotomist, people used to come into the lab all the time and get drug test done on themselves to see if they would "pass" for employment, or parole tests...

You can do this in most US States. Just search online for order blood tests.

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MsKD

Mike -

 

But how do you get the test ordered? If 1) the doctor will not authorize the orders, 2) the labs will not draw the blood without a doctor's authorization? Both Labcorp and Quest Diagnostic said they will not do the tests without a doctor's authorization form.

 

The doctors in my 25 mile radius say they don't do antibody testing for type 1 diabetes. What concerns my rheumy is that the endo didn't even consider the test based on my autoimmune history, which raised a flag for me, otherwise I was taking the endo's assessment at face value.

 

I am sure the ER doctors do test you if you come in on a stretcher because they run every test known to man in the emergency room when you come in by ambulance.

 

My question is would it have to come to that with me on a stretcher in the ER? Or it just be a slow moving process of higher blood sugars and trying different medications until finally my pancreas peters out and the option is insulin.

 

Based on the feedback I'm getting, it's not that big a deal that he didn't consider autoimmune diabetes (and I mentioned it to him again at my last visit two weeks ago and he brushed it off). I'm just going to let it go. At the very beginning the endo said that as long as my levels are below 200 (A1C below 7.0) I'm o.k. with diet and exercise.

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miketurco

What state do you live in? Ordering your tests is only prohibited in five states.

 

7.0 is not OK.

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MsKD

Spoke too soon. I guess due to my state or the company, I am unable to order the auto-antibody tests. Bummer. :(

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ant hill

Go to an ER!!! Explain how you feel and show your meter. Even do a stress test!!!

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naesatt

Thank you all for the feedback. I've checked with both labs in my area and neither will do the necessary tests without doctor's orders which my doctor will not  provide. I am just concerned whether or not I have another autoimmune disease since I already have a medical history of three--Graves Disease, Allergies (food/environmental), and Rheumatoid Arthritis. The RA was discovered during an Allergy attack in my Allergist office. The Allergist was smart enough to run a blood panel and then referred me to a Rheumatologist.

 

But if there is no point in pushing the issue of antibody testing, I should just concentrate on trying to control my RA which has never  been under control for the past 20 years.

 

Thanks everyone for your help.

 

kd

Hey, why don't you ask your rheumatologist to order the labs for you? Worth a shot (no pun intended)

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MsKD

Hey, why don't you ask your rheumatologist to order the labs for you? Worth a shot (no pun intended)

I did ask my rheumy, but he said he would if he could, but he wouldn't know how to interpret the results and he definitely couldn't forward them to the endo since they don't have a good working relationship. I also asked my PCP but he said that was the job of the endo and he didn't do run those these type of tests.

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Moonpie

I have no idea about these people but found it on a google search.

 

http://www.healthtestingcenters.com/

 

http://www.healthtestingcenters.com/diabetes-screening.aspx

 

Looks like you can print out your lab requisition form & go to your local lab. 

 

 

eta: of course you would have to pay the fees up front, but if it gives you peace of mind, maybe you should. I am glad my Dr is co operative. Good luck.

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miketurco

That's correct. Texas is not one of the states that prohibits you from ordering your own tests. You can go to the website and get what you want.

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miketurco

That's correct. Texas is not one of the states that prohibits you from ordering your own tests. You can go to the website and get what you want.

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MsKD

Thanks everyone for your help.  I've ordered my tests, paid my money, and will be going in fasting for bloodwork tomorrow morning. Just a simple thing--just want a definitive answer. I wouldn't think that would be too much to ask.

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MsKD

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.  I'm going to need you to help me interpret them.

 

The C-Peptide Serum - Result = 9.1 (HIGH);  Range (1.1 - 4.4) --- which I would understand to mean insulin resistance

 

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)

 

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

 

Please advise. My endo is not going to be any help. I saw him the other day after my RA infusion and BG had spiked to 298 and he said that if it continued to stay there he would put me on Glyburide but only if it didn't come back down. Thankfully it came back down to 115, but it's been rollercoasting between 115 - 177. I researched Glyburide and it is contraindicative to some of the meds I already take.

 

Thanks,

 

kd

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