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javaj

Which tests should I ask for?

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javaj

Hi All,

I suspect that I have had 1.5 rather than type 2. I'm looking to educate myself, but also want to get tested to know for sure - so I'm asking for advice on what tests to ask for. 

 

I have a long history - so I'll try to condense it down, but it's not easy for me to do anymore (cognitive issues with other autoimmune conditions)

 

I've been labeled type 2 since my late 20's, however I started having clear signs of insulin resistance in my late teens, early 20's. Also have PCOS.  Blood sugars finally crossed into diabetic ranges in my mid 20's, I kept my HbA1c at 5.1-5.3 with crazy strict diet and pretty intense exercise for a few years.  Managed to lose a good portion of the weight I gained in my 20's also, but not all of it. I stalled out still well within "overweight" ranges on the BMI charts.   I injured my shoulder, couldn't keep up with the exercise, diet eased up a bit too.  HbA1c creeped up to 5.6-5.8. During this time I had also regained 15 of the 40 lbs I lost (body comp changed much more though - I went from 26% bf to closer to 35% with that 15 lb gain, obviously lost a lot of muscle).

 

 Started trying to have a baby - doc finally put me on metformin.   After a year of trying and about 5 months of metformin I managed to get pregnant - sugars went massively out of control from almost the moment the test turned positive.  I was put on insulin immediately, taken off metformin.  I made it through most of the pregnancy with just a long acting insulin and being uber careful with my diet, mild exercise.  I had good pregnancy, no known complications from it, baby was healthy save for a heart defect which can't be decisively linked to the diabetes.  There is a history of heart defects on my husbands side of the family.   I didn't gain any weight while pregnant and was 15 lbs lower in the weeks after giving birth than I had been before getting pregnant.  Unfortunately - new baby didn't sleep - neither did I - diet and exercise got worse :/  I regained it all back plus more. Blood sugars creeped up even more 5.8-6.3 range. 

 

I had other symptoms of autoimmune issues in the first year of baby's life - they were investigated (sort of) and then dismissed.

 

I get put back on metformin because of cholesterol issues, weight gain issues, blood sugars slooowwwly creeping up despite me getting cleaner with diet (though no where near what I did in the years prior to getting pregnant). 

3 years later we decide to try for another baby.  I get pregnant right away. Second pregnancy was also pretty healthy - save for again needing to be on insulin immediately.  I ended up needing more insulin, and needing the fast acting much sooner in the pregnancy than the first time around.

 

Deliver baby - blood sugars go back to almost normal but not quite as good as the first time. I gained 5 lbs during this pregnancy - and was down about 10 lbs in the first few weeks after giving birth.  

 

Another baby who doesn't sleep though means more sleep deprivation.

 

More autoimmune symptoms start cropping up.  They get treated as depression *eye roll*

 

2nd baby was 3 when I finally said this is crazy - i'ts not depression, and depression doesn't deform your joints.  I started researching more for myself. 

 

Turns out I had sjogrens... and also undifferentiated spondylarthropy (an autoimmune arthritis) - since I have the HLA-B27 gene and also inflammation in my SI joints - they suspect it's Ankylosing Spondylitis, but I guess this doc doesn't give that diagnosis unless you're actually fusing in the spine?  

 

ANYHOW - sorry I know this is long. In the midst of them finally figuring the autoimmune stuff - LADA gets mentioned. They were going to put me in a study and do the antibody testing etc and let me know but then the study didn't happen.  Now I'm left wondering.  Looking back I can see a pattern of the autoimmune stuff starting in my teens, after contracting cerebral malaria (missionary kid - we were in West Africa). It's impossible to know of course, and I've seen conflicting advice on the course of treatment.  Endocrinologist at Mayo insists they wouldn't treat me differently anyhow.

 

The thing is - I've seen my HbA1c creep up and up and up, I know I"m getting older, 41 now, but I've worked hard in the last 2 years to tryand combat it. I feel like I am losing the battle. I'm currently on metformin ER 2000 mg daily. My cholesterol is still creeping up. Last HbA1c was 7.4 and scared the shoot out of me.  I walk 3 miles a day on top of my house wife duties - for a total of about 4-5 miles a day.  I swim also - though I suck at it. And water walk.  I can't do a lot of things anymore because of the arthritis riddling my body, but I am trying. Desperately trying.  

 

I realize it might not make a difference if it's 1.5 vs type 2 but I want to know. Knowledge is power.

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Kit

Actually it does make a difference to know if its type 1.5 or type 2.  The treatment requirements are different.

 

You don't need a study to find out.  Just ask your doctor to perform the antibody tests.  You obviously still produce insulin, otherwise you would be in much worse shape than you are now.  They should be able to identify if there are antibodies.

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javaj

So just ask for LADA antibody tests to be done?  I think my primary care would be open to this - and I think obviously I should find a new endocrinologist :/  Usually Mayo is pretty good, but maybe not this time.

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Kit

There are 4 possible antibodies that I know of.

 

GAD-65

IAA

IA-2A

ICA

 

Someone correct me if I got some of those wrong.  You can also do searches on Type 1 antibody tests to pull up more information on the subject.

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jwags

Ask for the GAD antibody test and the full Antibody panel. You may also want a c-peptide test. It sounds like you are a Type 2, but it doesn't hurt to get the tests done.

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NoraWI

If you have PCOS, then you are a T1. You don't mention whether you are on insulin. Ask to be put on MDI... basal insulin (Lantus or Levemir) plus a bolus insulin (Novolog, Humalog or Apidra). And ask for the antibody tests, a GAD65 plus one of the others. I wouldn't worry about cholesterol. If the c-peptide is higher than the normal range, then you are T2 and overproducing insulin (which I doubt you are). If the c-peptide shows you are in the normal to low-normal range, then you are typically LADA. But you have PCOS so find yourself a decent endocrinologist who really understands diabetes. An A1c of over 7% is not good.

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Moonpie

If you have PCOS, then you are a T1. You don't mention whether you are on insulin. Ask to be put on MDI... basal insulin (Lantus or Levemir) plus a bolus insulin (Novolog, Humalog or Apidra). And ask for the antibody tests, a GAD65 plus one of the others. I wouldn't worry about cholesterol. If the c-peptide is higher than the normal range, then you are T2 and overproducing insulin (which I doubt you are). If the c-peptide shows you are in the normal to low-normal range, then you are typically LADA. But you have PCOS so find yourself a decent endocrinologist who really understands diabetes. An A1c of over 7% is not good.

I have PCOS & I do not think I am a T1, I think there are several other of us ladies with PCOS on this board mostly T2. My D is pretty well controlled with the Met & mod carbs, so I don't think that would be the case if I were a T1. 

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