Tuesday, October 16, 2012

A happy doctor visit?

I've had some thoughts on this issue rolling around in my head for a while.  My family went through TrialNet testing in April.  Our oldest daughter is a type 1 diabetic (I've written about it here and here).  So we qualified to go through TrialNet's testing and went during my daughter's normal endocrinologist visit.  I didn't expect the results we got.  Nor the changes that would affect our family.

I've googled a lot about TrialNet positive results and haven't found very many.  (Of course this could be due to how people spell TrialNet, I've seen Trial Net and Trialnet and TrailNet, I'm not sure what trailnet is!)  In May, we received the call that I came back positive and our 2nd oldest daughter came back positive.  I misunderstood the nurse and thought she said I had a GAD score of 2 and our daughter had 4.  However, the true results were I had 2 autoantibodies and our daughter had 4 autoantibodies.

They warn you not to freak out, that anyone can have autoantibodies present and never develop diabetes.  But we both have an increased risk.  They can tell me not to freak out but it doesn't mean I'm not going to freak out!  I called the nurse back and got straightened out on which autoantibodies were positive, the amounts, and how to proceed.  She recommended taking our blood sugar if we were concerned.  And we could go to the next step of TrialNet testing of the Natural History Study (NHS). 

I didn't expect my blood sugar to be so high.  It ranged from 70-400.  Then I started to freak out a little more.  And I started to watch what I was eating.  I called the nurse back and scheduled an OGTT, which is the next step for the NHS.  I had a feeling I'd flunk the OGTT and I did.  I was already a diabetic.  Ugh.

So I made an appointment with an endocrinologist in our town.  He diagnosed me Type 2 and started me on metformin.  I saw a dietician and have changed my diet to 150 grams of carbs per day.  That has been the hardest change for me but I've already lost 10 lbs!  :)

My problem was researching diabetes types, I was pretty sure I wasn't Type 2.  From the TrialNet testing, I seemed to be Type 1.  And reading online I felt I might be LADA or Type 1.5 because I had features of both Type 1 (positive autoantibodies) and Type 2 (insulin resistance).  I felt like I was in diagnosis hell.  My daughter's endocrinologist faxed my doctor a letter saying I needed to be on insulin.  Reading online, I felt I needed to be on insulin even if it was just a little bit (if I'm truly Type 2 I could stop taking the insulin later if my blood sugar came under control).  My endo didn't think I needed it and recommended calling him when my blood sugar numbers went higher.  I felt I needed a second opinion with a different endocrinologist!!

Yesterday, I had that appointment and he recommended short-acting insulin at dinner.  Last night I gave my first Humalog Kwik* pen shot.  For the first time in a while, my after dinner blood sugar was where I want it to be.  So it was a happy dr visit after all.

This is LADA awareness week and yesterday was the first day, so I felt it was very appropriate that my dr visit was yesterday!

I'm going to post more of my story and will try to post every day this week to help raise diabetes awareness, but especially LADA.  And I'll talk more about our 2nd oldest and her TrialNet results.  :)  My circle of influence isn't very big but every little bit helps.

*I'm not advertising Humalog Kwik pen, this is just what my doctor recommended and gave me samples of it.  My daughter has used Humalog and currently uses NovoLog as backup for her pump.  I think both are great products and am hearing good things about the newer Apidra.  Humalog is from the Lilly USA company.  NovoLog is from Novo Nordisk A/S.  Apidra is from Sanofi-Aventis U.S.


katy said...

Hey, wow! Glad to read your TrialNet story.

I was diagnosed with T1 during TrialNet too, and my non-T1 son was diagnosed with being on-the-brink of diagnosis.

I can't wait to read all of your posts! Yay!

You are exactly the person I was hoping to find last summer. There are not many of us!

katy said...

I am now aware that I come here every three months to gush with excitement over finding your blog. This is embarrassing!

I guess I see it with new eyes each time...

Need A Nap2 said...

I asked the TrialNet coordinator and she said there a few parents diagnosed after their children. I was amazed because I really thought I was the only one!! I'm glad to "meet" you and have laughed a lot reading your blog. :)