Tuesday, April 3, 2012

Day three of Cushing's Awareness

In 2003 I went to the Mayo Clinic in Rochester, Minnesota.  I had huge expectations and dreams of how this would be the trip to change my life.  All my life I had heard how amazing they were and I really did believe this was going to be the beginning of the end for me.  I met with a wonderful Doctor there who did believe I had cyclical cushing's, but the issue with Mayo Clinic is they do not ever rely on outside testing.  In the span of one month I traveled to Rochester, MN from Illinois four different times when I felt I might be cycling.  Every time the test results came back normal, except for my blood. Apparently there was some rarities in my blood that made them think I had Leukemia.  I was scared to death when this was brought up.  Eventually it was ruled out, but to this day I still don't have an explanation as to how it is all tied together.  While I was there I had an ACTH stim test done, but those numbers came back normal as well.  It was becoming very frustrating to be me and not have the results show up when I needed them.  Basically at the end of the fourth trip there I was sent back home and mailed a letter stating all my test results and how there was a moderate suspicion that I had Cyclical Cushing's Disease. I felt one of two emotions with that letter.  One emotion was that someone did believe me, but I also felt dismissed yet again.  Left to die with no one to help me. Cushing's does and will kill someone if it is left untreated.

At this point I was pretty discouraged with the whole battle of trying to get help.  I saw the Endocrinologist back home who had been helpful a handful of times, but nothing really came of it.  I sunk into a very deep depression.  All my life all I really wanted was to be a mom.  My husband and I tried for seven years to get pregnant and with every period that would show up, I would mourn the loss of the child I never thought I would have.  It was absolutely devastating to me.  Everyone around me was ending up pregnant and I was left to my own despair and frustration.  During those two years I frequented the cushings-help.com forums, but never really posted often.  I had given up on fighting and was pretty much sure that I would never have the option of being a mother.  On May 5, 2005 my whole world changed.  I realized my period was late and that I was having horrible cramping that was not the usual cramping that I experienced at the onset of my period.  I had my hubby run to the store to pick up several pregnancy tests.  I had been through this many times before, but this time it was all different.  I watched a faint line show up on the test line.  My heart stopped.  I took another one, then another.  All three of them showed that I was pregnant.  Yet, I was still in denial.  I called a friend of the family who is a nurse and she drew my blood and had it checked in a lab that night.  That phone call changed my life.  I was indeed pregnant.  To this day, I am still in awe of the miracle that was created inside of my Cushing's ridden body.

My pregnancy was not the easiest.  I had several scares that involved quite a bit of bleeding where I thought I had lost my baby, but in the end everything turned out okay.  Towards the end of my pregnancy my blood pressure went up fairly high.  I was put on bed rest for a week, but a week later was able to go back to normal.  Somehow my blood pressure normalized.  When someone has elevated blood pressure in pregnancy, it usually remains elevated.  Mine went back to a normal level. This should have been a pretty good indicator that I was cycling during my pregnancy.  On Christmas morning of 2005, I gave birth to my daughter and to this day she is and will always be the best Christmas present and miracle I have ever received.  She made me a mother and I felt complete for the first time in my life.

I wanted so badly to be able to nurse my daughter.  I did everything I could and managed to keep at it until three months, but whatever hell was happening in my body was not allowing me to produce milk like a normal mother.  I was devastated and felt like less of a woman because of this.  Everyone told me I needed to not dwell on it and that it was okay to feed my baby formula, but unless they had been in my shoes they just cannot understand the devastation a woman feels when her body isn't functioning as it should and doing what should come naturally.  To this day I still have a hard time thinking of those days and how much it hurt me to always be angry and frustrated with this disease and how it was always playing against me.  After giving birth I lost all of my baby weight plus some within two weeks of having her.  I was amazed at how quickly it fell off.

The weight loss was short lived, as was the feeling of euphoria I had after having my daughter.  My body was busy plotting against me and I felt myself declining.  It wasn't extremely rapid, but it was rapid enough that I found myself not able to keep up with my daughter like I once had.  The pain became very extreme, but I pushed on.  At this point I decided it was time to start fighting for my life again.  What good was having an amazing child if I was just going to sit by idly and watch myself wither away into nothingness? Onward I went, but closed doors were always soon to follow.


  1. Great post, Mrs. Zebra - thanks for sharing your story of Cyclical Cushings

  2. It's very amazing you were able to get pregnant! I'm only 25 and unmarried. I've always wanted a child, so getting Cushing's has upset me greatly in that respect. I understand why the breast-feeding thing bothered you, but at least you had your baby!!

    I am very interested in this Cyclical business as I explained in my last comment. I have more questions: can you go months on end not testing for high/low Cortisol and then do? How do you know when you're cycling? Any hints to that? Of course it's hard to know with my sister- she has mental issues as it is with autism and such. The fact she's bi-polar makes me suspicious though.

    Btw, I actually have two sisters! The other just learned she has a mildly low thyroid with a "weird spot" and a long standings autoimmune disorder. The autistic one takes thyroid replacements, although she was on lithium once (can cause thyroid problems). Do you know any good articles on Cycle type Cushing's? I don't think there's much info out there?

  3. I am going to make another post for today that will have some very helpful information for you.

    I went months, even years without testing out of sheer frustration with the lack of test results. However, in order to really catch cyclical Cushing's you have to be diligent in testing. You can't test here and there. How we finally caught it was by doing basically a months worth of testing by basically testing 4-5 days out of the week. A lot of my days showed extreme lows and then finally a whopper of a salivary cortisol came back high. My 24 hours were never extremely elevated, and neither were my 10 hour urine free cortisol tests, but after the testing I found out I had been doing them incorrectly, so I'm pretty sure I lost a lot of highs.

    As for knowing when you are in a high, it's so very different for everyone. Mine usually came with a rush. I'd be exhausted, but then I would be wired. My face would start flushing, a lot of people start peeing a lot. People start breaking out in zits.

    Have you frequented the forums on www.cushings-help.com? There is a section devoted specifically to cyclical cushing's. The forums is such a wealth of information. I would be lost without Mary O's website and forums.

    I hope you one day will be able to have a baby. I do know of several people who have had children after having an adrenalectomy, so there is hope. Never lose hope.

  4. I had nursing problems too, and got even more symptomatic while pregnant, and lost two pregnancies. My pregnancy with my son was very difficult.

    I think the only reason I got to nurse for a year was because I had a great pediatrician and lactation consultant who started me on an herb and yeast regimen that helped my body compensate for the bad hormone levels.

  5. I think the only reason I made it as far as I did with my son was because of all the herbs I was taking as well. Otherwise there was no way it would have been possible. I used Fenugreek, blessed thistle and even used Mother's Milk Tea. I should become a lactation consultant with all the knowledge I gained while trying to trick my body into doing what it was supposed to do.

    I am so glad you have your son, JPH. :) Our little miracles.

  6. How are you now? Hoping you're in remission!! What treatment did you receive? Thanks for sharing your story. So many similarities.