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.

Sunday morning 5 a.m. blood draw and I am feeling like total crap. Unbeknownst to me, my nurse has called my neurosurgeon concerned about me. Now she was my biggest advocate and really seemed to be on top of things, she really didn’t understand that I wanted my cortisol to keeping dropping. She kept assuring me that it was ‘in range’ when I’d ask about my most recent labs. I’m not sure if it clicked or she just knew I needed something, but her call got my hydro started. By the time my neurosurgeon comes to see me Sunday morning I am feeling a little better. Up until this point there has been some concern of DI (Diabetes insipidus)  as my urine output was really high. But my new favorite nurse goes back through all my chart and adds up exactly how much IV fluid I have received versus my output and declares it a balance. I realize I’m probably the minority here but I really didn’t want my catheter out! I knew I was going to be frequenting the restroom much more than I was ready to think about moving yet. Thankfully, by the time they pulled it that afternoon my output had resolved and it was like immediately normal. And I mean normal like it hasn’t been in a long time, Cushings definitely kicked my kidneys into overdrive,but now it seems more in a normal volume. Sunday afternoon I walked a lap around the nurses station.

 
Early Monday morning the ENT team comes and thankfully pull the nasal splints out, and I’m being transitioned to all oral meds . I am still not sure I feel completely ready to go home, but my poor husband has been spending every night with me and I know he’s wiped out. Then I get a roommate. That was my final motivator. I manage to take a shower and get discharged about 3 pm.

Endoscopic endonasal pituiaty surgery

On Aug 26, 2011  I went to Ohio State University for pituitary surgery.   I elected to have my ENT shrink my nasal turbinates while he was up in there, in hopes of stopping my snoring and maybe one day sleep better

A very early morning of 4 a.m. for the pre-op shower of harsh soap and no hair conditioner or moisturizer! Arrive at the hospital of 5 a.m. for quick registration and onto pre-op prep. Five hours later under anesthesia and surgery done.

It fascinates me how clearly I can hear and understand what is being said in the recovery room, but not muster up enough energy to utter a word. My neurosurgeon comes to check on me and explained what he found, etc. On my MRI initially a suspicious area on the left side, which was confirmed by IPSS two weeks pre-surgery. However, I was disappointed to learn that when he got there, he did not find a defined tumor. Instead he saw ‘highly suspicious’ abnormal looking cells and removed the left 25% of my gland. He explored the remaining gland, making 3-4 cuts, and found the remainder to be healthy looking.

After finally getting a spot on the progressive monitoring unit, rather than ICU, I am settled in my room early Friday evening. After this move they took my diuladid away….and I’ll be honest morphine was hardly touching my headache. Thankfully the nurses on this floor are great advocates in contacting my surgeons and getting my diuladid back.   My cortisol labs are checked every 6 hours, thankfully for the first 24 hrs they left my A-line in and was able to draw from it.   He assured me that my headache is a good sign and as long as the diuladid is there I can make it through, I’m sure of it.

The first of August I went to OSU to complete my pre-op testing, including another MRI and visit with surgeons.  During my appointment with my neurosurgeon I was shocked and disappointed when he said he really wanted me to have an additional procedure done prior to pituitary surgery.  The procedure is called IPSS (inferior petrosal sinus sampling) and is done to pinpoint the location of the tumor.  Though as my father said “if my surgeon needed a more specific roadmap than I’d be happy to cooperate” and so it was.  Thankfully the neurosurgeon who performs this procedures was able to work me in and I didn’t have to reschedule my pituitary surgery. 

IPSS is an outpatient procedure, a variation of a cerebral angiogram.  I opted to be placed under general anesthesia as it is a lengthy procedure and crucial that the patient lie completely still, flat on your back, on a narrow ‘table’ with a thin mat.  The surgeon threads a catheter up each side from the groin, through the vessels that are near the pituitary gland (located on the underside of the brain, behind the sinuses).  After the catheters are in place a hormone called CRH  (corticotropin-releasing hormone)  is given to stimulate the tumor to do its thing.  The timed samplings begin and blood samples are taken at specific timed intervals, and then the catheters are moved to other sites and more samples are taken. 

I had the afternoon recovering on the floor in the hospital, and stayed a little longer as not only was I not feeling well but I had a slight rash on my neck.  By the early evening I was released to go home, a much longer day than my mother signed up for when she agreed to take me! 

I had read on the Cushings-help message board that IPSS can throw a Cushie into a ‘low’ cycle.  Since a Cushie’s body has become dependent on high levels of cortisol, when a low cycle hits it’s quite miserable.  But what I did not expect was to wake up and find my face red and swollen.  I had been given Benadryl at the hospital for my slight rash and took one at bedtime and again in the wee hours of the morning.  But when I really got up at 9 a.m. and caught a glimpse of myself in the mirror I was shaken!  Right away I called into neurosurgery, and it was determined that I was having an allergic reaction to the contrast media used in the IPSS.  I was given a prescription for prednisone to ward of the reaction; however that is not a great medication for a Cushie.  I did a quick course of prednisone and Benadryl and within a couple days I wasn’t swollen anymore and within a couple more days I was feeling like I was recovering from the whole ordeal. 

Results from IPSS took just over a week and it confirmed the suspicion of a left-side tumor.

i really must make more a point to blog earlier in the day, once late afternoon hits i just cannot think anymore. 

so today I will share two short video clips to watch, the first is on  OSUMC website on the type of endoscopic endonasal surgery I had done

Doctors Perform Brain Surgery through the nose

The second is a clip from a local newstation on Cushing's

News clip

After choosing my surgeons, I decided to post-pone surgery until the end of the summer.  We had been planning a vacation that summer, one we’d been planning for a long time.  Since it would be nearly 4 months until surgery, I opted to take ketoconazole during the summer, a medication that lowers cortisol production.  Taking keto helped, though it took several weeks to get to a therapeutic level.  Since there is not a large population of diagnosed Cushing’s patients, there is not a strong market for disease management.  Since I have cyclic Cushings, taking a medication to lower my cortisol was a bit of a crapshoot.  Dr. Friedman gave me an initial dose, but I still had to tweak it according to how I felt and judged my cortisol levels to be.  If I took keto and my levels were not high, I would put myself at risk for adrenal insufficiency, which is unpleasant in its mild form and can be life threatening if escalates. 

 Our vacation was fabulous beyond words...it had been a dream of mine to travel to Europe and we decided to travel by cruise once there.  We took a 10 day mediterranean cruise on Disney Cruise Line and then spent a couple days in Barcelona afterwards. 

When I booked the trip I did not have full-blown Cushings, and never in my wildest dreams could I have imagined how my health would decline.  It was frustrating to be on my dream vacation, and not be able to keep the pace I envisioned.  One of the most obvious and most common symptoms of Cushings is rapid weight gain, and by the time we took our trip I had gained 50 lbs, and i am only 5' 3 1/2".  It's hard physically to carry the weight, alot of it is in the abdomen which makes me feel pregnant.  It's hard mentally to have confidence and feel good about the way I look, especially around the pool or in front of a camera.  But I refuse to give the disease any power...I swam, I posed for pictures with the princesses and Jack Sparrow and i loved every minute of that trip!  Here is a picture of me with my favorite princess....yes, I"m a disney 'freak' and proud of it ;)

There are only a handful of neurosurgeons that have done the number of pituitary surgeries to be considered among the skilled and qualified.  At first I thought was going to have to travel to Pittsburgh, but then learned of one such surgeon who came from Pittsburgh a year prior and was only 30 minutes from my home, at Ohio State University Medical Center.  My husband and I went to consult with him and both felt very comfortable with his experience, and he is one of the most caring doctors I know.  I definitely liked the idea of having surgery closer to home; I believe that I got better post-op care since I was able to easily return for follow-up appointments.  Another factor I considered a benefit was that this neurosurgeon has a co-surgeon, and ENT, do the surgery alongside.  The surgery is done endoscopic endonasal and so who better than to open the doorway than an ENT. 

to align with my personality i must post today to stay true to my April Cushing's blogger challenge...but today has been a challenge.  My Cushings journey began, I believe 4-5 years ago, but active full-blown Cushings nearly two years ago.  That is bittersweet as I still remember having a healthy body that could be productive all day long and days like today are not only physically challenging but mentally exhuasting when it's the reality check that I do have the strength or stamina of my healthy self.  So, my story will continue tomorrow....

Happy Easter!  Today is also Cushing's Syndrome Awareness day, this date choosed as it's the birthday of Harvey Cushing, the brilliant surgeon who put a name to this illness...

http://en.wikipedia.org/wiki/Harvey_Williams_Cushing

A physician is obligated to consider more than a diseased organ, more even than the whole man - he must view the man in his world.
Harvey Cushing

Upon returning home I started my labs like it was my full-time job!  My local hospital was very cooperative in helping me set-up the midnight lab draw.  I would coordinate with the day-shift on which days I was coming and then simply show up to the ER who would call the lab for me.  The only downside to this was I was to test when I felt ‘high’ and I fluctuated so much that mid-afternoon I had no way of predicting what I would feel at midnight.  So I decided to take the ‘marathon testing’ approach and just test..test...test.  I did 17 midnights, one was lost by the big lab who processed it,  2 were in the diagnostic range, one in the suggestive range, and the remaining 13 were levels too low to confirm Cushings.  There was no pattern, rhyme or reason.  I was ever so thankful to finally have a doctor that would recognize the abnormals for what they said, not dismiss them because of the many normals intermingled. 

I tried salivas again with only normal results.  Ironically, on the same days I did those salivas I also did urine collections and they were sky high!  Even the gold-standard 24 hr collections were almost 3 times the normal limit.  I was getting highs in both the 24 hrs and the specialized overnight collection test. 

I asked my PCP to please request a copy of my MRI report.  Imagine my shock when I found out that only the last page of the report was faxed, the summary, as the entire report was 39 pages long!!  Oh my!  And to think that no doctor before would order an MRI for me.  The bottom line was a I had an ‘abnormal’ area suspicious for microadenoma, a very small tumor on a very small gland but wreaking havoc on my endocrine system!

Then came the awaited email from Dr Freidman’s office to please schedule a phone appointment.  My initial appointment with Dr Friedman had to be in person so that he could appropriately evaluate me.  After that appointments can be done either by phone or email.  The day came…and so did my clearance for pituitary surgery!

Today is Good Friday....as a christian I want to take my blog post for today to honor my heavenly Father and the sacrifice made by Jesus on the cross to save my soul and the gift of eternal life for all who choose to take it.  May God's blessings be abundant in your life, giving God the glory forever and ever, Amen!

At my appointment with Dr Friedman, I felt like a ‘typical’ patient….something I hadn’t felt in a long time!  We reviewed my past testings, symptoms, picture timeline and he told me that Cushing’s was a possibility. I was scheduled for a dynamic pituitary MRI the following day, and his belief was that if I had an abnormality on MRI then I probably had Cushings.  He sent me home with lab orders to complete, one of which is a specialized test that only he does in diagnosing Cushings.  Dr. Friedman believes Cushings is a disease of high cortisol at night, and so he focused on cortisol levels at night by way of midnight serums/salivas, along with a specialized urine collection which is collected from 10 p.m. to 8 a.m.  He also has his patients test 24 hr urines, but recognizes a cyclical Cushing’s patient will have periods of low, normal, and high cortisol throughout the day…if that is all collected together then a sampled it is very likely to average out into the normal range.

 The next day I went to Torrance MRI center and I was really anxious!  I’m a bit claustrophobic and I knew it was going to be tight corners!!  Thankfully there was a bit of pharmaceutical help to be had, and the techs are awesome.  I was pleasantly surprised at how quickly the scan went. 

Now that my medical business was finished in California…Tami and I were able to play!  We went to a taping of the Mike and Molly show, did a Warner Bros. studio tour, a ‘sites and bites’ tour of Santa Monica, and a day of touring LA by way of the hop-on-hop-off bus.  Actually, the day of the HOHO bus, I had to send Tami out to start without me…we went out to breakfast and I was really struggling.  Thankfully later in the day I was able to meet up with her at the Farmer’s Market and finish out the day together. 

Cushing's disease symptoms

Today I'm going to share an illustration that shows many of the possible Cushing's symptoms.  I have some, but not all (thank you Jesus!) and that is one reason why my diagnosis was very difficult.  All Cushies will have these symtpoms....but not ALL of them

CALIFORNIA HERE I COME!!

 Remember my respect for those who have gone before me….well they all gave the same advice.  ‘Stop beating your head against the wall and go see a Cushing’s expert’…..at this time there were 2 recommeneded, equally respected as experts but each with pros and cons.  I decided to go see Dr Theodore Friedman in LA, more info at www.goodhormonehealth.com.   Booked my appointment, booked my flights and started compiling papers and pictures and charts in my binder.  My bestie Tami was going with me and we’d take a couple days in LA to play after the appointment and MRI.  Yes, you read that correctly…Dr Friedman was going to order a pituitary MRI for me!  oh joy!  The one request I couldn’t seem to get fulfilled here at home.  I know God’s hand was in this, as up to this point I didn’t know how very critical it was that specific protocol be followed for scanning this pea-sized gland, and so had it been done prior I may not have had it done correctly. 

My appointment was March 1, 2011.  .  Eight and half months after my belly swelled up without explanation.  I had a CT of the abdomen and pelvis, a pelvic ultrasound, a consultation with a rheumatologist and my gynecologist, and numerous visits with my PCP.   Seven months after the word “Cushing’s” had been first uttered to me by endo #1.  Six and a half months after endo #2 dictated his suspicion for Cushings was ‘quite low’.

I didn’t want to tell people what I was doing.  After all I had gone through extensive tests and appointments and nothing was found wrong that couldn’t be fixed with some diet and exercise, or so I was told.  I knew my body, I had been an avid exerciser for 15 years!  I had completed 10 half-marathons!  Something was wrong!  And yet the judgment I felt, whether it real or perceived, kept me from shouting out loud that I was going to see the man who was going to figure it out!!  People mean well, but don’t know what I say.  I actually had a friend say to me ‘you just want to go to California’.  For real?  Yes I want an illness that no doctor here is willing to properly evaluate me for, or have the courage to diagnose it, so I’m going to travel across the country to see a doctor who doesn’t take insurance but actually researches the disease I “think” I have. 

Maybe that’s a bit harsh….i really did believe that if I didn’t have Cushings, then Dr Friedman would still be able to figure it out.  He is the master of diagnosing difficult endocrine cases. 

I just flipped through my binder and saw that after my appt with endo #1, I wrote her an email sharing some articles on testing for Cushings and asking for more labs and a pituitary MRI.  I never heard back from her. 

My first ‘cold’ midnights were within the ‘suggestive’ range for Cushings syndrome, although my 24 hr UFC were normal my 17 OCHS were high indicating states of hypercortisolism, but not the constant state which would bring in the high 24 hr numbers.  I had one 8 a.m./4 p.m. day which showed a lower number in the morning and a higher number in the afternoon.  This is ‘diurnal flipping’, where one’s cortisol production is opposite of the natural healthy rhythm.  I shared my testing with my new Cushie family on the message boards and I will always remember the reply of “Welcome to Cushings” after my diurnal flip was proven.  Not a club anyone wants to join….but clearly God was giving me the direction…..in random testing I was getting results suggesting Cushings and those who went before me and had the knowledge and experience encouraged me to keep going…….

I decided to try a different local endocrinologist; there are only 2 in my small town.  I prepared myself with my questions and new lab results and made the appointment.  I really wanted this to work out.  I was so disappointed when almost immediately I felt ‘scolded’ for seeking a second opinion.  He actually questioned why I wanted a second opinion as he knew the first endo I saw and she was good.  And that they both had attended a conference on Cushings at NIH and so therefore they knew all to know on the subject,  in his humble opinion.  He recognized that I did indeed have a couple abnormally high cortisols, but since I also had normal results it was his determination that the likelihood of Cushings was ‘quite low’.  He continued with “…it could be very early stages of Cushing’s and if that is the case, this can often be difficult to diagnose.  This is generally not a clinical emergency and can often take time to evaluate and actually determine if there is Cushing’s.  We will plan on re-evaluating many of the testing she aleady done and go from there”

Now call me crazy but re-evaluating what’s already been evaluated and dismissed by you?  not a chance.  I guess I should give him credit for recognizing the possibility of Cushing’s as he dictated in my consultation letter I just quoted, but in that patient room he told me since I didn’t have purple stretch marks or a ‘beer belly’ it was very unlikely I had Cushings. I asked him flat out “how much weight do I have to gain for you to consider this?”  He assured me that he didn’t want me to gain any more weight, but he would not order a pituitary MRI for me at this point.  Even though I had abnormal cortisol labs, I also had normals.  I felt like the normals trumped over the abnormals and that thinking seemed backward to me.     After I left his office with 3 more saliva tests to complete.  I wrote him a short letter and included pictures of my ‘beer belly’ taken later that very day, as it came like clockwork every evening.

 This endo did offer to send me to Mayo, but I had done my homework and knew that Mayo is not helpful for cyclical Cushings…the type of Cushings I believed I had with fluctuations in cortisol levels.  I decided to do those salivas and when they resulted I got a call from his nurse wondering why I did them since I had cancelled my follow-up in 3 months.  I explained that I wasn’t going to wait, to get sicker another 3 months, and I was moving on.  She told me that endo #2 wanted me to call and let them know if I got a diagnosis.  I never did that.  I think I’ll send him a letter in hopes that he won’t make those quick judgments the next time he has a patient like me.

Up to this point I had full trust in my doctors, and no reason to doubt what this endiot had just told me.   I just couldn’t wrap my head around a dramatic, rapid health change with no cause.  I refused to buy into it.

I read all that I could on the Cushings-help board and vowed to learn from the experiences of those who had gone before me.  The key lesson at this stage was:  Cushing’s syndrome could not be ruled in or ruled out with only a couple lab tests, it would take multiple tests in the 3 areas that cortisol is tested in, which are blood (serum), saliva, and urine.  Not everyone ‘spills’ cortisol in all three areas, so it’s recommended to test in them all initially.  Thankfully my PCP is in my corner and agrees to write out labs orders for me, I asked for midnight cortisols, cortisols at 8 a.m. and 4 p.m. on same day, and 24 hr urine UFC (urinary free cortisol) with 17 OCHS (hydroxycorticosteroids).  He wrote this for 4 times each.  Now the gamble….I had to get them done on days which I felt ‘high’ to show the imbalance.

Spiritually I had to ‘Let go and Let God”…..I had to find peace in this chaos.  My daily prayers was “Lord, guide me in the direction to correctly figure this out and give me the strength to follow your guidance”