Cushing's Info

I guess all in all, I'm pretty lucky to have been diagnosed and treated as quickly as I was.  It didn't seem that fast at the time, but after reading lots of other stories, I feel fortunate that the process for me was fiarly quick.  Here's my story:

February 2008:  Went to my doctor with the symptoms of fatigue and body pain.  She put me on a low dose of synthroid for my low thyroid, and I did feel better almost immediately.  She encouraged me to lose weight (250 lbs at that time).

Summer 2008:  Saw a lady on one of those medical shows whose hair was thinning and she was having trouble losing weight.   I decided to look up my symptoms and found my way to a site about Cushing’s.  I was shocked to see I had nearly every symptom and my body was shaped exactly like the drawing on the website.   I hated the fact that my hair was falling out and I have this coarse hair on my face and jaws.  It’s humiliating.

February 2009:  I went to my regular doctor’s office with a printout of these symptoms  and picture.   She was great and told me that even if she did all the blood work needed, she wouldn’t be able to treat me for Cushing’s.  She sent me right on to an endocrinologist.  This endo did not think I had Cushing’s.  She told me it was rare (really???) and that most of the people who came into her office were shaped like me.  She did, however, agree to do some testing.  She found the thyroid was still not up to par, so she increased my synthroid dose.  She did the Low-dose dexamethasone suppression test which showed that my cortisol was not suppressing at night.  She still didn’t think I had Cushing’s because I was successfully losing weight with the Weight Watchers program.  Feb 2009 I was weighing 250 lbs and after just a few short weeks on Weight Watchers, I had lost about 15 lbs.  I began to think (and hope) I didn’t have it either.  She sent me to a rheumatologist to check for fibromyalgia and rheumatologist found that my vitamin D level was dangerously low.   She had me take mega doses of vit D and some of the body pain began to go away.  I was happy and thought that maybe the Cushing’s was not my problem.

April 2009:  Endo decided to do a 24 hour urine collection test fully believing that it would come back normal.  The test results were not in my chart, so while we waited on the nurse to get them, we talked about how she was sure I didn’t have cushing’s.  When the nurse brought in the test results, she read them and then just looked at me.  I started to cry—I knew she was telling me I probably had cushing’s and while I was grateful to know why I had felt so bad, I was also scared at this diagnosis.  My endo decided maybe I needed an MRI of my pituitary gland.

July 2009:  Had my first MRI which showed a 6 mm “something” (possibly artifactual—radiologist’s words).  He didn’t think it was tumor.  The endo and I decided it best to repeat the MRI three months later and then see what happened.

October 2009:  2nd  MRI showed the same 6 mm “something” so my endo referred me on to my neurosurgeon.  I was scared, but really wanted to find out what was going on in my body.   Also, was at about a 25 lb loss since February.  Weird.

November 2009:  Met my neurosurgeon and really like him.  He repeated the MRI one more time with a stronger magnet that would show better than the previous MRIs.

February 2010:  I didn’t see surgeon for these results until February of 2010 because of scheduling problems.  He said I definitely had a pituitary gland tumor and that it needed to come out.  He said it would shorten my life if left alone.  Since I’m a teacher and was managing alright, I decided to wait until the summer of 2010 to do the surgery.  He said that would be ok, but I found out it was a bad decision.

March 8, 2010:  Ended up in the ER with what I thought were symptoms of heart problems—tingling arm, heart palpitations, and shortness of breath.  Normally I wouldn’t have thought much about one of those symptoms—had had them all before—but to have them all in one day, it scared me.  I’m 43 and have heart disease in my family.  Cardiologist on call admitted me and came to see me the next morning.  He suggested an angiogram even though he didn’t think there was anything wrong.  He thought it was anxiety.  The angiogram went horrible—he didn’t patch the femoral artery where they went in and I tried to bleed out twice that evening.  I went home a different person.  The morning before I went to the ER, I had done 40 minutes of vigorous aerobics before work.  I had been exercising for three months and was feeling strong.  (BTW, my heart/arteries showed great—no blockage.)  Cardiologist said I could resume exercise a week after I got home.  I felt so awful, I knew I couldn’t exercise.  I was so weak and my legs were shaky, I was anxious, and couldn’t hardly eat.  My blood sugar which had been getting weird got terrible.  For the year or so before this, I would have to eat about every 4 hours or my blood sugar would seem low and I’d get nauseous.  Began losing weight very rapidly—the anxiety I think.

March, April, May 2010:  After the angiogram, I had to eat something every two hours or I would feel like I was going to pass out.   What I know now, is that all this was probably my cushing’s “meltdown.”  I didn’t realize that, though, and convinced myself I had a blood clot somewhere in my body from the angiogram that was going to kill me.  One day at school, I emailed my step-mom and told her how horrible I was feeling.  I really just felt like I was dying and would just drop dead any time. I know this was part anxiety, but I was very scared.  She suggested I get my blood pressure checked by our school nurse and I did.  It was 178/109!  I felt a lot of panic, but the nurse just told me to go to my regular doc the next morning.  My regular doc tried to make me feel better and tested my blood.  She ordered blood pressure meds and an antidepressant.  After a few weeks, I still felt horrible.  My feet burned all the time, my legs tingled, and I felt so weak that they might just give out on me at any time.  I went back to see regular doc and she tested blood again. This time found potassium deficiency and ordered supplements.  This helped with the burning feet and tingling, but it didn’t go away completely.  It helped a great deal, but I still felt horrible all the time.

My poor kids (10 year old daughter and 8 year old twin boys) didn’t understand why I went from a mommy who exercised every morning to one who could barely get off the couch.  My husband struggled with this too.  And I didn’t have anyone to talk to.  It was awful.  I sure wish I had known about this website before.  It never showed up when I searched cushing’s—I only recently found it after I searched for “pain after cushing’s surgery.”

May 2010:  As school ended, we were able to schedule my surgery.  My surgeon uses an ENT to open up behind the lip and go up through the sinuses and then he takes out the tumor.  It was a little tough scheduling both specialists for the same day.   Weight loss since Feb 2009 is 50ish lbs.  Weird.  Only good symptom that I think was caused from the cushing's is that the hair on my legs seems to have fallen out.  I can go a week with nearly no stubble.  Hair on my face is horrible.  I hate to go out in the sun when I’m around people.  I see them looking at it.  Also realized that my eye brows  are not just a good shape, I used to have to pluck them, but now they are very thin.

June 16, 2010:  Surgery day!  The surgery itself went very well.  The doctor said he believes he got the entire tumor.  I was only in ICU for 24 hours and in the hospital 5 days.  I didn’t see my kids very much because one of my boys passed out when he saw my IV.  Thankfully, I have three wonderful sisters who took great care of them.  My husband stayed at the hospital the entire time I was there, and my mom took vacation days to come down and take care of me too.  She even stayed a week with us once I got home. I did underestimate what the doctor meant about the extreme fatigue I would feel in the days/weeks after the surgery.

June 28, 2010:  Had my first 8:00 am cortisol draw post-surgery.  Still feeling pretty bad—better, but very tired. And having occasional headaches.  Sinuses are also whacky.  Pulling all kinds of yuck from them.

July 6, 2010:  Post-op visit with neurosurgeon.  Said my 8:00 am draw from June 28th was normal (low but normal) and to stop taking the supplemental hydrocortisone.  I was taking 20 mg at morning and 10 mg at night.  I asked him specifically if I was going off cold turkey, and he said yes.   About a week after the doctor took me off the supplemental steroids, I woke up with extreme joint/muscle pain.  This was disheartening, but I was feeling so much better, that I thought I could stand a little body pain.    I’m surprised that my teeth and upper gums are still so numb.  Doctor said expect that for about six months.

July 26, 2010:  Called doctor about pain and he has referred me to a new endo (as my old one left) and he schedules me to come in for blood work.

August 4, 2010:  Saw new endo and had blood work.  Also took home the 24 hour urine jug.  :)  My kids think it's so funny when I have to keep a jug of my pee in the fridge.  :)  This blood work and 24 hour urine test came back normal, but showing my cortisol level still very low.  Endo is having me come back for a cortrosyn test.

September 2, 2010:  Had cortrosyn test.  Still in an extreme amount of arthritic-type pain.  A week later, got results which showed that everything appears alright.  My adrenal glands responded appropriately to the cortrosyn test.  I’m beginning to become very irritated with the pain, but don’t want to go back on the supplemental steroids if I can avoid it.  I’m feeling so much better physically and emotionally.  Something weird—noticed that the hair on my arms is different.  Not sure when it happened, but it is very thin and just sort of pokes out.  I’m fairly sure that the hair there used to sort of lay down.  ?????

September 9, 2010:  3 month follow-up MRI.  Must have been feeling a little bit over-confident at having had 3 MRI’s already--freaked out a little on being in the MRI tube this time.   Spent the rest of the day shopping!  Haven’t felt good enough to do that for a long time.  :)

September 21, 2010:  Saw neurosurgeon for MRI results.  Shows nothing at this time and everything looks great (he says).    I’ll have another MRI in December when I’m six months out from surgery.

October 19, 2010:  As I update this information, I’m about 4 months out from surgery.  I’m amazed at how much better I feel.  It seems like in the last month or so, things have really gotten so much better for me psychologically and emotionally.  My blood pressure is trending down and I don’t get headaches at all anymore.  My teeth are feeling much better too and my skin  is very different.  I had lost about 50 lbs from Feb 2009 until June 2010 which I know is very abnormal for cushing’s.  I can’t explain it.  I’m maintaining right now without trying too hard.   Need to try harder and lose another 20 lbs if I can.   About the skin—the little tiny red dots on my tummy are going away, my neck is no longer quite as red as it was.  I had developed these horrible red circles and blotches on my neck and chest, but they are nearly gone.    While my weight is stable, my face has changed.  My chin is pointer.  :)  Seems like things are re-distributing.  I don’t know.  Also—my hair is starting to grow back in on top of my head.  I’d love to not have to use sunscreen on my scalp next summer, but really—I just don’t want this tumor to grow back.  I’m praying it doesn’t.

That brings up a very important point.  I don’t know where I would have been without God through all this.  I’ve prayed more in the past 8 months than ever before.  I have leaned on God and He has seen me through this.  I’m so very fortunate and thankful for that.

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