this low this week is kicking my butt!  i took our new puppy on a walk at lunchtime, for 40 mins....a stroll that included a stop at the walking path where she could run some 'laps' and burn some energy and it wiped me out...good and proper.  i even took a kinda nap this afternoon...the kind where you fall asleep but wake yourself up and realize it's only been 10 minutes.  those are the kinds of naps I'm capable of these days.  Days like today I'd love to sleep and hour and wake up refreshed and energized and finish out my day strong.  I'll be honest, I'm already counting down the hours to jammie-time (said in my best MCHammer impression).  I miss the days of going non-stop and being productive....I have a list of easy things to-do and nothing got done today and it's not looking promising.  I really think unless you have a chronic illness or live with a family member with one, it's just not possible to understand the depths of the fatigue it brings.  I am so fortunate that God has blessed my life in that I can take these days as slow and non-productive as I need too.  it does take it toll mentally though...nobody wants to feel like they are drowning in 'life'!

Hypercortisolism

oh no!  I missed another TWO DAYS in the challenge!!  I hope I get a pass though, the past two days I was in a major 'low' and felt horrible!!  The type of Cushings that I have is cyclic/episodic....I'm really not sure which officially ;)  Cyclic Cushings is periods of high and low cortisol that shows a pattern....epsodic Cushings is periods of high and low cortiols with no pattern (more random and unpredictable).  I have never asked Dr Friedman specifically which of the two I fall under, it doesn't really matter.  I am beginning to believe I am more episodic as when I track my symtpoms and test results I cannot find a pattern.  But it could be that the patterns are long duration and I don't test long enough to reveal them.  Or it could be that i cycle often throughout the day and would have to test daily throughout the day to reveal them.  see why I say, it doesn't matter ;)  Nonetheless, cycling between high and low cortisol is very hard on the body, the difference resulting in a 'crash' which leaves me feeling completely beaten down for the time. 

 

So I thought it might be good to share the symptoms of high and low cortisol

 

Hypercortisolism (high)

·   Extreme weight gain

·   Upper body obesity

·   Rounded face

·   Increased neck fat

·   Deepening voice

·   Balding

·   Hirsutism

o    Increased facial hair

o    Increased body hair limbs

·   High blood pressure

·   Sleep disturbances

·   High blood sugar

·   Diabetes-like symptoms

·   Hyperadrenocorticism

·   Bruising easily

·   Red face

·   Slow-healing skin

·   Weakened connective tissue

·   Osteoporosis

·   Hyperglycemia

·   Severe weakness

·   Psychiatric disturbances

·   Skin problems

·   Thin Fragile skin

·   Poor healing

·   Abdominal stretch marks

·   Mood changes

• Irritability
• Depression
• Moodiness
• Fatigue
• Mental disturbances

· Weak muscles

· Backaches

· Sexual and fertility problems

·         Irregular menstrual period

·         Absent menstrual periods

·         Reduced libido

·         Reduced male fertility

Hypocortisolism (low)

            Fatigue

·          Weakness

·          Nausea

·          Vomiting

·          Weight loss

·          Abdominal pain

·          Hypotension

·          Hypoglycemia

 

Difficult diagnosis of endocrine disorders

Today I want to share a video of Dr Friedman entitled Endocrine Conditions, Why Are They Difficult To Diagnose? There are more short videos of him answering more specific endocrine health questions that you should be able to easily find off this link (I see alot along the right hand side)

no need to go into surgery details again....it was pretty much the same as before ;)  Thankfully the headaches were not as intense, nor the nausea.  Knowing what to expect allowed me to better prepare myself for the aftermath of surgery, and so I had better drugs on board...including an anti-anxiety as Cushings causes high anxiety.  I was very thankful I was on it when my post-op day 5 labs came back.....once again high numbers.  I literally threw the paper across the room.  A much more mature reaction than the first time ;)  I was not surprised as I said, I did not have the cortisol withdrawal symptoms that come with a remission from Cushings.  Even so, it was nice to dream........

Currently I am weaning off the replacement hydrocortisone (steroids) that are taken post-op.  This coming week will be my final week on them....and the fact that I have not had difficulty in weaning is another tell-tale sign that I am not in remission.  I will begin testing again once off the hydro, to see where my cortisol levels are...and I suspect that will start before the end of the April blog challenge.  My prayers are that if I still have active Cushings that it will show on the tests quickly so that I may start one of the two medication options for the short-term.  Dr Friedman has already told me that he feels I will need to have a bilateral adrenalectomy done, sigh..more surgery and this one with permanent consequences, but that is for another day.

By the time the holidays rolled around I was highly suspicious that I still had active Cushings.  My symptoms were not resolving or showing any progress in that direction.  I had a phone appointment with Dr Friedman mid-January and he recommending I re-test.  It was so disappointing and frustrating to think about not only having gone through the surgery and recovery, but testing again.  Testing is a long process for cyclic Cushies.  I tested for 3 weeks and that was long enough to see my body was making too much cortisol still.  The post-op MRI that I did in December showed a 'suspicious' area.  It is important when having a pituitary MRI to have the dynamic protocol, this is done by having the contrast injected through IV while the scan is being done.  If there is a tumor the contrast will not 'fill' the gland symmetrically. 

I contacted my neurosurgeon and scheduled my second pituitary surgery for March 8, 2012.   

bittersweet.

oh my I missed TWO days!!  i thought i missed yesterday, well that is just an example of a Cushie moment ;0)

After my pituitary surgery I spend Sept/Oct recovering, I was fortunate in that my Mom was able to stay with us during the week for the first two weeks.  After those weeks passed we were blessed to have meals brought to us three nights a week for the next 6 weeks.  I know that sounds like a long time, recovering from pituitary surgery is a long, slow recovery.  Because the surgery is done endoscopically there is no incision site or scar that is tangible proof of the major surgery done.  Besides sinus congestion, I just looked tired.  It was hard for me to be on the receiving end of all the help...I'd much rather bask in the joy of giving.  I had to remember that in my years of good health when I was able to do for others, I found joy in serving.  And so in my time of need, if I didn't allow those offering to help, them I was robbing them their opportunity to find joy in serving.  It was very comforting to me that my family was able to eat healthy, hot meals (there were usually leftovers) and not rely on take and pizza for two months! 

I began walking as soon as I could, probably around 3 weeks post-op.  I started strolling up and down my sidewalk, graduated to around the block, and worked my way up to 2 miles.   It felt good to be able to exercise again!  I had developed steroid-induced myopathy when my Cushing's went full-blown and lost all the muscle mass that I had worked so hard for in the years past.  Before Cushing's I was an avid exerciser, as I mentioned before.  I was pretty strong, in fact the strongest I had ever been.  The high levels of cortisol broke down the muscle I had and left me with little strength/stamina. "Exercise intolerance" is actually a symptom of Cushing's.  I had told the first two endoits that I saw that not being able to workout was a symptom I was experiencing....their solution:  diet and exercise....sigh. 

The next 24 hours goes about as I expected. I didn’t get out of bed except to go to the restroom and I had no appetite. I was really queasy, but no vomiting. I mentally geared myself up to go get labs done on Wed, day 5 post-op withholding cortisol/ACTH labs.  Now I will say that it was pretty rough at this point, but withholding gave me a major setback. I was having lots of anxiety clock-watching and praying the time to pass. Brushing my teeth literally made me vomit. My husband bought Ensure because I could barely eat a yogurt or pudding. By Friday night I felt so awful that I insisted my husband call my neurosurgeon directly and get me an Rx for nausea.  I really thought I was prepared to feel bad, and I knew feeling bad was good…but folks this was more than I could handle.

Saturday, with the zofran on board I was able to cope through the day. By Sunday I started feeling slightly better but not well enough to take a bath until Monday. I was scheduled for an ENT check on Tuesday (day 10) and I really didn’t know if I’d be able to make the trip down even Tuesday morning. I took it slow and was able to go thankfully. My ENT ‘irrigated’ me with scope and suction and whoa! I could breathe again! My neurosurgeon stopped in at my request as I was pretty upset having received my day 5 labs – cortisol 22.6 and ACTH 114 (9-48); he admits to be surprised at how high my ACTH was, and his initial thoughts were it was still a surgical response.  Symptoms are strong indicator and I am told to not give up hope based on those labs. I got my path report too. It’s confusing at best but my neurosurgeon felt it was a ‘positive’, though he also believes that a normal path report would not be unheard of and the report should be taken into consideration of the whole picture.