Changing Doctors like Changing Seasons

 One would think that once you have survived the agony of finding a doctor and getting a diagnosis it would get easier. 

  

I honestly never believed that.  It was painfully evident that my original endocrinologist’s purpose was to help me get a diagnosis - NOTHING ELSE!  We was not interested in treating me.  He didn't want to help me with the issues that were rearing their ugly little heads.  He simply wanted to mark me as a notch in his medical practice headboard.  I was simply a number - a number that he wanted to add to his success column.  Sadly, for me, I was having some familiar symptoms and welcoming all sorts of new and just as ugly ones into my laundry list of issues. 

  

So...I have to move on.  It was painful.  I didn't want to start over.  I was sick to death of doctors, but I was not ready to relent and I was honestly still quite ill. 

  

I spent most of the summer of 2006 finding a new doctor, becoming acquainted with that new doctor and re-testing with her.  Then she passed me off to a resident and I spent another few months getting acquainted and working with her.  Despite all the changing, I felt good about the new team and I felt like they were listening to me.  

 

 During this time, I had a difficult conversation with my Doctor.  My fertility was of great concern to me.  My irregular periods were top of the list of symptoms that sent me in looking for help almost 3 years prior. 

  

I should stop here and tell you that in all the changes in my life, the one constant, the one thing that has never changes for me has been that I want to have children.  I want to be a mother.  I feel this with all of my being.  So, of course my fertility was weighing on my soul. 

 

 So, I made an appointment and I went in prepared to have a difficult conversation.  I needed to know if this dream of children was something that I needed to let go of.  Hanging on was hard, but hanging on with no possibility would be worse.  The conversation was frank and my doctor said that we had to work on balancing my body, but she was not ruling children out.  My heart was lighter than it had been in a very long time. 

  

So, we did a lot of testing and we worked to get my body balanced out.  I started new medications and worked very hard to maintain a healthy diet and good health.  That brought us to the end of the 2006 quickly. 

 

 This is an email that I wrote to a fellow Cushie in the beginning months of 2007:

 

 

I totally understand the "blah" feeling that you are experiencing post op, and I'm sorry that you have to go through it!

 

I am 20 months post op....pit adenoma...removed June of 05...and it has been a battle. I have really had a hard time getting my body and soul balanced out again. I had this pipe dream that things would just turn off and go back to normal as quickly as they went down hill...and that was just not the case.

  

I had to change doctors after surgery. Once the tumor was removed the Dr. that diagnosed me was blinded to helping me work at better health. I sought out a new Dr. and have been working with her for almost a year now and am still having trouble.

 

I don't know if this will help you or not, but this is the "road to better health" that she suggested.

  

She started by having a bone density scan to ensure that my bones weren't in bad shape as a result of the Cushings. She also did a bunch of blood work and a SUGARS test to see about my insulin, since Cushing's can bring on diabetes. I was not diabetic, but was, what she called, INSULIN RESISTANT. So, I began a regimen of medication....Metformin...It is hard to start taking.....so it takes a few months of weaning ON to get up to the correct dosage. Then she really dissected my thyroid and explained that any off-balance can cause problems. I started synthroid and increased it till be blood work started showing improvement. All this took a few months.

  

In the meantime, I have had 2 MRI's and done another 24hr cortisol test to put my mind and the Dr's at ease that all this still well. I will have an MRI every year with my pap-etc as part of my yearly from now on.

 

I also started a low impact exercise program and she also sent my to a nutritionist. These things were helpful, but not easy. As of the first of Jan I was released to full physical activity at the gym. I thought for sure the weight would fall right off with the balanced diet.  I WISH IT WAS THAT EASY! Turns out I started GAINING weight again! So frustrating! My metabolism was so dead. I would work out and then practically fall asleep standing up because it would just shut off. That isn't good for weight loss!

  

Also, one of the symptoms that I've had for years and one of the things that sent me to the Dr. to begin with was the lack of my period. I still hadn't had one and so we started addressing that problem. I saw a specialist who took a close look at my "girlie" parts and hormones. Turns out that I had some tumors and poyps that needed to be removed.  So...back to surgery I went.  (Honestly, that was some of the most painful testing I've had done.  They checked to see if my tubes were open - OMG!  That was awful)  But, that completed, I do feel different.

  

Tuesday I felt so good. I had energy and just felt better. I can't really explain it. I haven't had that feeling in a couple years. It didn't linger, but it happened and that is progress. It has been so long since I've felt "good" that I forgot what it felt like. I thought I was having an out-of-body experience or something.

 

ANYWAY...the point of all this was to share with you that it is an uphill battle and that you should NEVER give up pursuing better health! I don't know anything about growth hormone, so I can't help you there. I just know that I will continue in my quest for balancing my body and I will try to be patient until it gets on the right track.

  

I hope you figure out what you need to do next! 

My thoughts and prayers are with you!

 

 

~Autumn