Misdiagnosis as an Adult with Type 1 Diabetes

You hear a lot about kids going un-diagnosed with Type 1 Diabetes and the results are catastrophic. Many end up in the children's hospital and sometimes it's not caught in time.  As an adult mis-diagnosis is an all too familiar occurrence.

Many of the warning signs may be things that you've "dealt" with all your life? Wetting the bed, peeing all the time, short tempter, mood swings, etc. All things that normal people go through and not necessarily red flags for diabetes.

I visited my Dr after having issues with anxiety and stress. I was having panic attacks and I explained the helpless feeling I would have when I was stressed or the anger I would display and then the remorse I'd have after.  There was no reason for me to act like this and I wanted help.  My Dr prescribed prozac as my first course of treatment and explained that it may work, but if it doesn't there are a variety more we can try.

Out of the gate it seemed to work...I was fake happy. After a couple weeks the anxiety and stress came back and my Dr changed meds on me to see if it would help.  Soon enough I quit taking the happy pills as I knew it was not the problem.

I continued on with these feelings and started doing Cross Fit as a form of tension release.  It was amazing how quickly I started shedding weight and trimming down.  I could gain and lose weight quicker than anyone I knew.

One day though, after applying for life insurance I got a phone call that my A1C was at 13% and I needed to go to the Dr right away.  I was sure it had to be the gatorade I drink the day before.

Initially I was diagnosed with type 2 diabetes considering my age and what little my current doctors knew about diabetes.  They gave me metformin and lantus as well as a beta function test.  I called a couple days later for the results of my beta cell test to be told the function was a 2 and at the bottom of the scale.  The nurse actually told me on the phone that I have type 2 because people my age don't get type 1.  We had an argument that ended with the phone being disconnected.

By this time I had done enough research that I was able to guess that I had type 1 diabetes.  I made contact with Benaroya Research Institute in Seattle, Washington where I took the tests and confirmed that I did have Type 1. Fortunately for me, now I have a great Dr that I see and I am able to share my experience with others.  There are a great number of people out there living in hell and don't even know that their blood sugars are high.

Frequent urination, stress, fatigue, thirsty all the time, these are all signs that I can trace back many years.  I am lucky the way I was diagnosed, some people aren't always that lucky.  Please help spread awareness and keep people close to you informed.

Choosing an Insulin Pump

Holy Cow! So I am in the market for an insulin pump and I am just blown away by the amount of information available and also the lack of information available.

I like the Tslim and I have a dexcom g5.  The two are not compatible until the next Tslim update which won't be until later this year if not next year.  I like the new medtronic 630g system and it uses a different cgm thna my dexcom.  What am I going to do with the 6 boxes of Dexcom sensors in my pantry if I go to a different pump system?

Anyway it's a lot to take in and I am just beginning this journey.  I believe a pump will make things easier for me and I won't have the rocky hills of blood sugar like I have now. We will have to wait and see.

I have asked friends to see what works best for them and I've read a lot of reviews online to see how others like their pumps. It is crazy that so many different options are out there and likewise they are not compatible with each other.

Technology is forever evolving and I am grateful for all of the tech that makes my life with type 1 diabetes easier.  It's just a mess trying to sort through it all!

Changing MY Ways

I posted not too long ago about combination therapy and how it worked for me.  Again, I am not a Dr and all of the things I write about are my own opinion.  Anyway, I took Victoza on order to prolong my honeymoon period and help my body generate it's own insulin after I eat.  The results were amazing and I am greatly appreciative that my Dr. helped me get it covered by my insurance company.

The reason for my earlier post was not to recommend a certain therapy to anyone, but to get people to think for themselves and research what is available to them. Now that I am a couple years after diagnosis and my priorities have changed, I am opting to move to standard insulin therapy.

As I've trained harder and my endurance has gone up, so has the challenge to keep my blood sugar up during exercises without eating an insane amount of carbs. I would sometimes have to eat 80 - 100 carbs to keep up with a 6 mile run!  This is incredibly frustrating especially when I am not hungry and I have to stop my workout to get my BS back up.

Now I am looking to select an insulin pump to continue my journey.  One of the benefits I see is dosing half units or less at a time.  It wasn't until recently that I even carried around rapid acting insulin...now I am taking more and more as the honeymoon wears off.  I don't know which pump I am going to go with, as I am now going through the process of comparison.  Any comments on what works for you would be great.

Thanks!

Your Endocronologist Matters

In my short 2 years after diagnosis with Type 1 Diabetes I have actually seen 3 different Endos not counting the Nutritionists, Educators, and research doctors.  I didn't realize the range of doctors, specialists, and their role along the way.

I live in Spokane where we have a large population of older adults.  This is very apparent in most endocronology waiting rooms.  As a "controlled" type 1 diabetic, I felt pretty out of place at a few offices in town.  Not that I was uncomfortable, but the people around me had a range of illnesses that were being treated and Type 1 Diabetes was just a sliver of those people.  I was mistaken for a medical student prior to one appointment and a drug rep at another appointment.


Getting an appointment is about a 6 month wait, and that is after you get another Dr to write a personal referral.  Your appointment is a flat 15 minutes to the tick of the clock and you walk out with more questions that you came in with.

I understand the experience for other Type 1 diabetics in Spokane may differ from mine, but this is been my experience.  I took my file to 2 other offices in town only to be turned down as a new patient.  I couldn't even get a hold of one of my Dr's after having a prescription denied by the insurance company. It was just a mess.

That is when I was directed to the Poly Clinic in Seattle.  This place has been nothing less than amazing. I made my first appointment a couple of weeks out rather than waiting for 6 months.  When I got there I waited for a short time and was in the room and appointment under way on time.  I gave them my file of appeals and insurance transcriptions and within 48 hours they had my meds approved and ready to be picked up at my pharmacy.  They answer online messages promptly and are incredibly helpful when I have questions.

All in all I never understood the importance of a great doctor and endocronologist. The poly clinic has not asked for my endorsement in any way, I am just touting how great it has been to be a patient there.  It is worth the 5 hour drive across the state and I am incredibly grateful for all they have done so far!

If you feel like your Dr isn't listening to you, or you want another opinion you can find a new Dr. Make sure your needs are met, your questions are answered, and your Dr cares about your health as much as you do.  If you need help with your insurance company, ask you Dr's office. They have a wealth of experience. Don't settle for mediocre care.  Your life depends on it.

Combination Therapy and Type 1 Diabetes

Something that separates me from many others, is I use a combination therapy approach to help manage my Type 1 Diabetes. What this means is that I inject another medicine in addition to my insulins.

Liraglutide, or Victoza is a drug approved for type 2 diabetes. The crazy thing is that it has failed Type 1 studies due to hypoglycemia and low blood sugar. In my opinion that is the purpose for taking it.  Without trial and error it may be tough for someone who has always managed their blood sugar to adjust to the effects of Victoza.  As someone who started the drug very soon after diagnosis, I knew nothing different.

My initial Endo gave me Victoza as a trial for several months with incredible results. When my insurance company denied me for it, i was left to pay out of pocket or quit taking it.  I appealed to my insurance company several times and finally after changing doctors and 3 appeals, I finally won.  

During the appeal process I found it odd that an independent doctor who I have never met has the ability to write a report as to whether this is a medically necessary approach or not. This Dr has never met me, doesn't know my lifestyle, and has an opinion for what I should take to manage my diabetes. I'll leave that for another blog...

I still take Victoza with my insulin and combination therapy has allowed me to continue the honeymoon phase longer than most.  I am just over 2 years after diagnosis and it still works wonders.  The idea is to stimulate the remaining beta cells to produce insulin after I eat.  Up until about 4 months ago, I rarely took Humalog with meals.  I still take a small amount, 1-3 units depending on the carb level of my meal.

If you want to know how Victoza works, check out their website. (https://www.victoza.com/consider-using-victoza-/how-victoza--works.html)

As an adult, we have the ability to decide which medicines we take based on what we and our Drs deem necessary.  I found a Dr who fought to get it approved and who openly discusses options for managing my Diabetes with me.  This is important as treatment options evolve and new methods take shape.  I am not saying that this is the correct approach for everyone, what I am saying is that we should keep our eyes on what new drugs and technologies become available.  We should push our Dr.'s to look into new methods and how they can help.  We also need to push our insurance companies to open up to the changing world around us.  They have their "rules" that they abide by and they will fight to stay the course.  They are not living the daily grind like we are. It might take a fight to get what you want, but fight it. 

#DoAbetic

PR Distance: Road Bike

I went on a group ride yesterday and it was my first ride outside of my neighborhood.  My previous best was 10 miles and this seemed to be an accomplishment to me.  I met my buddy at the bike shop and we took off in a group of about 9.

I immediately knew I was out of place with my gatorade bottle in my water bottle holder and my baggy shorts on over my bike shorts.  Who cares though right?  My only challenge is finishing and maintaining my blood sugar.

I ran 5.25 miles yesterday morning not knowing that I was about to ride 24 miles and climb a hill that would piss off my truck, let alone my bike.  I climbed at mile 12 or so and climbed for what seemed to be eternity.  I think the elevation climb was just under 1000 ft.

Thank you to my riding buddies who stuck behind me and helped me get up that hill.  I felt like I had accomplished a huge feat when we finally crawled to the top and took in the amazing view of Spokane Valley.

The ride down was a breeze and when we finally got back to the shop I was exhausted.  I am grateful for friends who help push you to your max.  Without that, I would not have made it very far last night.

First Blog Post: @DoAbetic

Over the last couple of years after being diagnosed with Type 1 Diabetes I have struggled with what it all means.  I've been told all of things I shouldn't or can't do anymore.  I have also heard all of the horror stories of what has happened to various people with Diabetes.

As I begin my journey running, cycling, and eventually swimming; I have found it hard to locate personal testimonies from fellow Type 1 Diabetics.  How they train, what they eat, how often they test, etc.

I know everyone has a different struggle and their bodies all work differently, but finding information on how to get started was and still is tough.  So I thought I'd share my journey here and anyone who is interested in following is welcome to do so!

I am not a Dr and all the information seen here is merely my personal experience. I welcome any comments and ideas from others.

Thank you and stay tuned!