Bab's Blog

It's just me, in words.

The New Diagnosis January 25, 2010

Filed under: Diabetes — babscampbell @ 1:34 pm
Tags: , , , , , , , , ,

I was having higher and higher blood glucose readings.  Exercise was making it worse.  I couldn’t really eat anything without it reflecting an even higher number flashing in the meter window.  I felt horrible, actually worse than when I was first diagnosed.  My head continually felt “thick,” it was hard to concentrate, I was exhausted, thirsty and SO frustrated that I did everything I was supposed to and it didn’t help. 

The guilt associated with diabetes can be devastating.  When you’re told that following “the plan” will eventually lead to a happy, healthy life; that you’ll eventually be off meds and be able to live “normally” with diet and exercise and that slips away, you question everything you’re doing, eating, etc.  You keep looking for that one thing that you’ve missed.  Did I miscalculate the carbs? I should’ve exercised just 10 more minutes!  Should I drink more water?  Should I workout again or sleep it off?  It’s maniacal!

That’s the state I was in when my twitter friends jumped in to help. One said that my story sounded very familiar to her.  She, too, was diagnosed as a Type II and it was later changed to Type 1.5 LADA.  She (along with a few others) suggested I get in right away to see an Endocrinologist. (a Dr. that specializes in diseases of the Endocrine system, a specialist in diabetes) I started searching on the internet only to find that most Endos are either not taking any new diabetes patients, or they’ve got such a large patient load that it takes 3-4 months for the first appointment.  Then another friend on twitter jumped in to help.  He was going in to see his CDE, and mentioned my story to her.  She and I spoke on the phone and she suggested, to get in earlier, that I volunteer for a research study that KU was involved in.  I would be able to see an Endo immediately, get free office visits, free lab work, free meds. . it was too good to be true!

I made the appointment and went in to see the CDE in charge of the clinical trial and the Dr.  As I explained my symptoms and the journey thus far, they each wrinkled their brow and answered several times with a, “Really?”  As he ran the end of the reflex hammer across the bottom of my foot he said, “I’d like your primary physician to run a blood test for you.  You’ve got an atypical presentation and I’d like more lab work.”  What?  What’s atypical about my presentation?  Then he said it. . .I don’t think you’re a Type II at all.  I pressed him further, asking which symptoms were atypical.  Apparently, the fact that it hit rather suddenly, I have no immediate family members with diabetes, the fact that I can feel my blood glucose rise and fall are not typical of Type II. 

The test he wanted performed was a GAD-65 Antibody. This test looks for a specific antibody in your blood that shows your body is fighting against the beta cells in your pancreas.  A normal test result is 0.05-0.1, mine was 25. This means my body has been building up antibodies to fight my pancreas and my pancreas is shutting down insulin production.  Indeed, I am not a Type II, rather I have LADA, or Latent Autoimmune Diabetes in Adults, also knows as Late Onset or Insulin Dependent Diabetes.  I was able to get on insulin and start seeing the Endo this week.  I feel so much better already and look forward to what fine tuning of my treatment does for my day-to-day life.

I hope my story helps another along the path, if just to let you know I get it, I’ve been there.  I know how a high makes you feel like your head is full of Jell-O.  You question everything you did that day, what did I eat wrong? Did a miscalculate? Should I exercise? Should I not?  AAAGH

I also know how a low can bring on a feeling of panic, fevered, shaking panic.  All you know is you MUST eat and you must eat NOW!  You feel like you need to just open the fridge and start shoveling it in.  Your brain is trying to remain calm and say. .no, I’m ok, and your body is screaming, I’m dying!  Eat something NOW! 

So, I hope you’ll add me to your regular blog reading, comment, have a conversation.

Advertisements
 

3 Responses to “The New Diagnosis”

  1. shareleann Says:

    Just wanted to stop by & say thanks for the info. I have been having trouble with very high numbers no matter what I was doing. now I am on a med that gives me the lowest numbers I have ever seen & it feels almost worse than the high numbers.
    Thanks!

  2. babscampbell Says:

    Thanks for commenting!
    I hope the information was helpful. I had been in the 2-300’s for months and I agree, once I got on insulin and my numbers were in the low 100’s all the time, I felt strange. You get so accustomed to how your body feels when your numbers are off that sometimes even when you’re back to “normal” it’s odd.
    I’d check with your medical team and make sure you’re not going too low. Maybe that’s the problem.
    Good luck!

  3. John Reed Says:

    Babs,

    Thank you, first of all, for this article. I too have been struggling. I was Dx’d in September, 2006 on my B-Day. Long story short, I started off with a BG of 128 and an A1c of 6.1. I just made the minimum Criteria. I was originally prescribed Diet and Exercise. It worked well for about 1-1.5 yrs. then I had to begin Oral Meds. The numbers just kept going up. The oral meds (metformin) had an opposite effect. I went from 188 to 260 lbs. BG went from mid 100’s to low to mid 300’s. Finally the changed up the Rx to Januvia, Darn, can’t take it. HIVES! OK, Glipizide and Metforamin.

    At long last I began a regimen of Lantus. I began at 10 units and have titrated by 2-3 units every 3-4 days. I am now at 112 units (56 in a.m./p.m.) Plus I use Novolog at each meal. I AM STILL IN THE 200’s!! Sorry for yelling

    I spoke with my Endocrinologist who related the following in a very thick Indian accent: What does the label mean? Type I, Type II, Juvenile, Adult, Type 1.5, LADA. You are either Insulin or Non-insulin Dependent.

    Today was probably my lowest reading in some time and it was 181. I don’t know if changing my “Label” will help or not. However, I will be checking to see if the GAD-65 antibody has been drawn or not.

    Again Thank You,

    Doc
    John D. Reed


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s