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Aimee, Adrenal Bio

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I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.

Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.

The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.

Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.

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Correy D (Cushie Correy), Pituitary Bio

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pituitary-location
In the beginning:

This journey started long before I knew it did. I was healthy for the first 27 years of my life. Around 27 or 28 I started having problems. It started with high blood pressure. No problem, that runs in the family. Medication will solve that. Around 30 there was something more strange going on. I still produced milk even though my youngest was 5. My doctor sent me in for a galactogram (a mammogram with dye injected in my glands). It came back normal. My breast and mammary glands were fine.

Over the next few years came depression, weight gain regardless of diet and exercise, and random muscle strains. My doctor said to try a little harder and eat a little better. I threw my hands up in the air. I had already tried everything and still I was gaining. This went on from 2009 to about June of this year.

In June of 2013 I broke a rib when I was trying to crack my back. June of 2014 I broke another one on the opposite side when I was coughing. Finally, my doctor took notice. All the sudden my previous diagnosis were not individual issues, but symptoms of a bigger problem. Cushing’s disease has a laundry list of symptoms and I had almost all of them. I had already mentioned lactation, high blood pressure, depression, weight gain and brittle bones. I also had other symptoms I was not even aware of. My face had become round and red, most of my weight accumulated in my torso, there was a pronounced fat hump on my upper back, there were purple marks on my belly (striae) which I had thought were stretch marks, my face had become fuzzy, and I hadn’t had a period in at least 7 years.

The symptoms weren’t enough for a diagnosis. My doctor orders labs for hormone levels, cortisol levels, and I don’t know what else (about 5 blood vials worth). These came back with high cortisol levels and enough other oddities that I was referred on to an endocrinologist. This doctor did the first panel of tests over and added a few more. It seemed that everyone knew what it was but no one wanted to be the one to diagnose Cushing’s.

Now there are only a couple of things that can cause Cushing’s. The first is steroid abuse…ummm, no. The second is a tumor either on the pituitary gland or the adrenal gland. These marvelous tests determined that it was the pituitary version because if it was adrenal only cortisol would have been effected. The pituitary gland controls a myriad of chemicals in your body and all my levels were off.

OK, so they were convinced it was Cushing’s, now we just had to see the tumor to prove it…MRI time. I don’t know if you have ever had an MRI but I despise them. Reasons, I am claustrophobic and very large. It was a horrible experience resulting in fuzzy images, but they were clear enough to show a tumor sitting square on my pituitary gland. For those who have not looked it up by now the pituitary is on the front (face) side of your brain, settled in between the major artery and vein in your head, right behind your eye balls and sinus cavity. This is not a convenient place to have a tumor.

The endocrinologist then referred me to a neurosurgeon. The local surgeon referred my case to Mayo Clinic of Minnesota. So, we are talking tests and waiting from June through September. I was told to report to Mayo September 23rd. I was given the impression I would meet the doc and be scheduled for surgery Wednesday or Thursday. This was not so.

I brought a team with me: my sister, Amanda and her friend Athena and my bestie Lauren. We first met with the Mayo endocrinologist, Dr. Abboud. He decided he wanted to run his own tests there before there would be a surgery. He did blood test, urine tests, even saliva tests. In the meantime, I met the neurosurgeon up there, Dr. Von Gompel. He explained the surgery and scheduled it for September 30th 2014.

Here are my Facebook posts from this time:

9/23 First Mayo Update:

I met with Dr. Charles Abboud, Endocrinologist and we did an in-depth evaluation of my symptoms, physical characteristics, and medical history. There are so many things that I have considered normal for me over the past 8 years that are related to this disease. It’s nutso pants.

Anyways, it was determined before surgery they want to do more scans and testing because although it is likely the pituitary tumor is the cause, I may have other contributing tumors elsewhere. This means I will likely be up here longer than anticipated with surgery delayed for a minimum of 3 days to get results on this battery of testing. More to follow…

9/23 Second Mayo Update:

I have now received the schedule for the week. I will have more scans to be sure there are no tumors elsewhere. I will also have various test on bodily fluids, secretions, swabbings and their reactions to different medications throughout the week.

I met with the neurosurgeon, Dr. Jamie Van Gompel this afternoon. This was the appointment in which they gave me the assessment of what the surgery would entail for my case specifically, risks, odds of complications and most importantly a date. The trans sphenoidal endoscopic surgery (I feel so smart) will be next Tuesday now. Until then more waiting…and testing…and more waiting.

Sept. 24

Yesterday was information overload. Between consultations and running floors 1-19 of the clinic multiple times then making extended hotel arrangements and Walgreen’s runs I was exhausted x12.

~~~~~~~~~~~~~~~~~~~~~~

On to today: I am finally closing out day one of excessive testing. Upon arrival at the clinic I turned in samples of #’s 1 and 2 and saliva (all separate, thank gods). Due to my claustrophobia, we opted for wheelchair when using the elevators (I had collapsed yesterday when one got too full on me.)

At 8 am there were 6 vials of blood drawn, 9:30 a chest x-ray, then a info session for my sleep study tonight, next a midsection CT scan with contrast (holy warm sauce) and finally another blood draw for my PM cortisol levels. Whew…donsies!!!

Sept 24

I have difficulty sleeping without a fan. I have not slept well the past couple of nights because of lack of air movement. I was all ready to run to Target and buy one when Lauren was like, I’ll just call the front desk and see if they have them. This is me being used to self-reliance vs actual customer service. My sleep study is saved. Now we’ll see if I legitimately stop breathing.

Sept 26

Friday update:

The past couple of days have been kind of slow compared to the first couple here. Yesterday completed my sleep study and CT looking for additional Timons, results still pending. Today I had a bone density test. This shit gave me osteoporosis. That’s why my ribs kept breaking. Over the weekend, I’ll have more ‘sample collections’ and blood draws and attempt to not be bored to death in between.

On the plus side the weather has been gorgeous, I have had muchos girl/sissy time, and in a town like this survival stories abound.

Have a GREAT weekend!!

Sept 29

Case of the Mayo Mondays:

Today began with another blood test. This one, the lab tech had to get an IV which is generally not an issue for me. This time the guy blew out two veins. The 3rd try he “kind of” a clear one in my hand. Through this he had to do medication injections and blood draws at 15 minute intervals for an hour and a half. This resulted in knots in 3 places where veins used to reside.

Next up was a head CT to map my brain. This was interesting to me. I got another IV (a clear one this time) for contrast dye, nodes stuck all over my face and head, and run through a CT scanner. From this they will make a map of the blood vessels through my head to help the surgeon navigate tomorrow. They removed the nodes but left dots in permanent marker and tape over them so they do not get wiped off before tomorrow. It will be interesting walking around town tonight.

I am done with appointments for the day. Whoop!

The good news of the day: The chest CT showed “multiple healing rib fractures” but no more Timones. Yay!!

At 8:30 tonight I will call an automated system, enter my patient ID, and find out what time to report for duty tomorrow. I must find distraction. I am starting to get anxious. Can it be next week already?

Sept 29 Post 2

Reporting for duty at 5:45 am central.

Tomorrow determines if I get to continue to eat vegetables or become one…

Sept 30 I registered at St. Mary’s Hospital and got settled in. Surgery began at 9:25. I was done around 13:00.

Oct 1

My first post-surgery post

Timone is gone. I am tired.

Oct 2

Hey all, got behind on the updates because a lot has changed very quickly. I have “complications”. Please keep positive energy pointed this direction. I may be up here for a while now.later Oct 2

If medical stuff makes you icky, keep scrolling.

So here’s the run down after surgery. The tumor removal itself went well. They believe they got the whole thing without much damage to the pituitary gland. The two issues that remain are post-surgery my cerebral spinal fluid (csf) sprung a leak and the Cushing’s disease that the tumor caused kicked in.

A few hours after surgery I started dripping/ running clear “snot” from my nose. It only happened when I was upright or leaned forward. The fluid was tested and determined to be csf. Now a person cannot just go around leaking brain juice so action had to be taken. The doctors put in a lumbar puncture and are draining spinal fluid every two hours. This will take the pressure off my head and give it a chance to heal. This means I am here at least till Sunday. If this does not work, they must go back in and manually patch the leak.

The Cushing disease also kicked in full effect today. That meant today with the tumor gone the excess amounts of cortisol my body was used to stopped and I crashed. This would be like a meth head going cold turkey. This morning was spent trying to find the right steroid/ dose to balance me back out. With luck, I will be able to wean off these eventually.

As they steroids are currently wearing off again I’m going to sleep because I don’t really have a choice. NITE ALL!!!

Oct 6

So I know it’s been a while….

The day after my last update they put in a lumbar puncture and connected a drain to it. 10 ml of csf was drained every 2 hours for 2 days. This took the pressure off my brain= no more leakage= time to heal. I have also been sleeping almost nonstop. It seems to have worked, no more nose leakage. They drained 30 ml this morning and will do one more drain tomorrow AM and if no more leakage I will get all my departing instructions and GET TO LEAVE.

Next challenge: re-balancing my chemical physiology.

Oct 7

This morning I woke up in Minnesota, still in the hospital. They stole more blood, drained more csf, and pulled that thing out of my back. Best news of the day: After they pulled out the drain my nose did not start leaking again. This meant I was clear to leave…woot!

Paperwork, discharge instructions, shower because ewww hospital, prescriptions, freedom. Oh no, not yet, doctor appointment with my favorite endocrinologist of all time, Dr. Abboud. So, it took a while but home we came.

I have a fuzzy head but full heart. Thank you all so much for your kind words.

Home at last and then the real Cushing’s journey began.

Home Sweet What?!?!?

I came home from Mayo October 7. Home to me may be considered a madhouse to others. My house contains my children (17-year-old girl, 10-year-old boy), my sister, 3 dogs, 4 cats, and 3 turtles. Upstairs contains my dittos and 2 of the cats; the basement homes my sister, her two dogs, and the other 2 cats; and the main level is myself, my dog (Toby), and the stupid turtles. I was happy to be going home to my madhouse.

Before the surgery I had done quite a bit of research about the symptoms of Cushing’s, the causes, the surgery itself. I had not, however researched much about Cushing’s recovery. While still in the hospital I remember sleeping, in between all the intermittent blood draws, vitals checks, and med administering. There was not much else. Once home I was initially just concerned with watching for brain juice leakage. I was not prepared for reality.

Read reality:

http://csrf.net/doctors-articles/recovery/recovery-from-cushings-and-coping-with-recovery/

My reality also included my madhouse. For as full as my house is I spend most of my days alone. My sis works nights so she is sleeping during my waking hours and gone overnight, the dittos are in school and the girl works nights. The cats are on their respective floors. It’s just me and my Toby since the turtles are not for me. When I’m awake, I look around and see all the things I could be doing if I was mobile. The floors need swept, dishes need done, general tidying and dusting required. It’s not that these things never get done but they could be done faster if I were able.

I have now been home a month. Physically, I was more ok when I got home than now. At that point I was still tapering down prednisone. I was still sleeping quite a bit, especially after dropping my dosage, but by the end of the week I was moving around more. After a few weeks, the tapering was done and I crashed once again. I am sleeping till the afternoon. I am weak to the point that moving from room to room is exercise, painful exercise. I stopped taking the prescribed pain killers so I am depending on Tylenol. Tylenol sucks ass. I also still lose words. Often, I cannot complete a sentence. I know exactly what needs to be said but the term, phrase, or name is completely gone. In my “before Cushing’s life” I was pretty flipping eloquent so this is extremely frustrating. To be honest the whole thing is frustrating. I am a strong intelligent independent woman reduced to incapable and not so eloquent blob.

A series of unfortunate events…the sequel.

I suppose I should start at the end of my last post which was flippin January for gods sake. I don’t know why I felt the need to stop writing when things started getting bad again. Documenting my recovery was so much more positive than writing about a relapse but now it’s time to catch up. Cushing’s is a journey with highs and lows. Jump on the coaster with me.

At the end of January I was on the way over a big hill on the coaster. I was doing water aerobics, getting more mobile, working with dogs again. I had my appointment with the local endo and she was dismissive. She basically said the tumor was gone and I should be losing weight faster. This is the exact reason that not just any endo should deal with Cushing’s patients. They don’t get it. Removing the tumor is only step one. Next is re-balancing hormones, then dealing with all the havoc Cushing’s has left behind. My January cortisol labs had been normal, as in recovered norm which was a recovery from the crash post op 0. It is not usual to be at normal range so soon after weaning of prednisone, but we took it for good news anyways.

By mid Feb I was starting to get nervous. I was starting to feel things, previous symptom kind of things. My skin started to break out again, I had headaches again, and I started to gain weight to spite moving more than I had in over a year. I had a follow-up MRI in February. There was the post op variances they expected and then, there it was, a new 2 mm regrowth. FML!

I did not feel good about continuing with the local endo. I could not shake the feeling she had blown me off as just another fat hypochondriac. My GP referred me down to U of I where I met Dr. Christina Ogrin. Our first appointment she took a whole afternoon to listen to my story. She told me she had never dealt with Cushing’s before but she wanted to help and she would work with her colleagues and research to see where we needed to go from if the tests confirmed a recurrence. We repeated the cortisol and other hormone tests that had just been performed in January and there was the confirmation. My cortisol was back above normal range. Dr. Ogrin contacted Dr. Abboud, my Mayo endo, to get his take on the situation. After consulting the U of I team, Dr. Abboud, and her own research, Dr. Ogrin laid out the options.

1. Operate again

2. Go on ketoconazole and get radiation

3. Try a newer medication (Signifor) to counter the cortisol and possibly shrink the tumor.

As I was just coming off of my first trans sphenoidal adenectomy, I was not eager to jump on that again. I had heard horrible things about ketoconazole so that was not a happy thought. Signifor sounded like my best option.

There were many baseline tests that had to be performed to start this process. We tested cortisol levels from blood, pee, and spit. We did a new MRI (April) which showed Marty* had already grown. I had an EKG and ultrasound of my gallbladder because Signifor can affected the heart and cause gallstones. When we did the gallbladder ultrasound there were already about 9 good sized stones present. At that point it was decided I should have it removed prior to starting the medication. Signifor also causes an increase in blood sugar and since mine was already borderline high they started me on Metformin. They tell me my gallbladder has to come out, a preventative measure since the odds if it causing problems if it stayed were close to 100%. Sweet. Here I am taking it all in stride. If that’s the next step, then that is what we will do. My coworkers were supportive and told me to put my health first. I would not lose my job. Woot!

May came in like a whirlwind. I had a pre-op appointment with general surgery to set up my gallbladder removal. A couple of days after that I was in my garage leaving for work when I lost my balance and fell forward catching myself with my arms outstretched. My balance, muscles, and bone strength had all taken a hit from the Cushing’s so my arm snapped. The break was bad, right above the elbow, there was one clean break and another longer break up the bone. One ambulance ride and many pain pills later I was admitted at St. Luke’s and informed they would have to operate. I am now the proud owner of hardware in my arm.

At this point I was already scheduled for my Laparoscopic Gallbladder Removal (Cholecystectomy) so in the beginning of June we went ahead and did that too. What is supposed to be a simple surgery went sideways when they nicked my liver. I had to have a icky drain for the bleeding. A couple weeks later I went to have the drain removed and everything looked fine. That night I starting to get sick. My temp went up, I started vomiting and my stomach hurt so much I thought I would pass out which would have been a blessing because I wanted to sleep till it was over but I could not due to the pain. I know, run on sentence, but it was a run-on couple of days. My stubborn behind would not go to the doctor because I had just been and everything was ok. Or not…

I ended up in the ER again. They transported me from St Luke’s to U of I because my liver levels were ridiculous high and the local hospital did not want to deal with my issues. Once at the U, I was admitted, poked, and prodded. By the end it was determined that I was passing a gallstone that had gotten stuck on the wrong side of the clip when they took my gallbladder. This can only happen in my world. Who passes a gallstone when they no longer have a gallbladder? This girl.

This took us to July. Dr. Ogrin was out of the country. She wanted me to take the month to recover and get used to the Metformin. We would meet when she returned to start the Signifor. And so we did. Signifor is very expensive as it is rare and there are no generics for it. Dr. Ogrin successfully fought the insurance company because there is no other FDA approved medication for pituitary Cushing’s. The first month I was on it there was little relief. My brain fog was back along with my other returned symptoms and now I also had extreme digestive issues. These were three part. Gallbladder removal itself affects digestion. The Metformin is known to cause such problems. Now the Signifor injections themselves cause nausea. After a month, I got a 2-week reprieve because the insurance company denied my renewal so now we are starting over. I will retest cortisol levels in November to see if the Signifor is doing anything aside from making me nauseous.

I have also spoken with the radiology oncology department at U of I. They have reviewed my case and I am awaiting word on whether they would recommend a single dose (gamma knife) radiation or a five-week treatment. Either way I would continue on the Signifor because the radiation results can take up to a year to show.

There you have it. The last nine months in 1500 words ish. Some have babies in 9 months. Not I, I have a series of unfortunate events.

*I named Timone’s sequel Marty for a few reasons. Marty is the zebra in Madagascar. Zebras are the animal mascot for Cushing’s because doctors have this awesome mantra that is drilled into them when they are in medical school, “If you hear hoof beats, think horses.” Well Cushing’s is one of the most misdiagnosed illnesses because our symptoms may be hoof beats but zebras have hooves too. Sorry for the tangent but it is important to the Marty explanation. In Madagascar 3, Marty has a moment that mimics the overactive distractedness that a Cushie brain knows so well. He sings and dances for his new circus friends. “Afro circus, afro circus, polka-dot, polka-dot, afro!”

https://www.youtube.com/watch?v=aZYFqle7GvA (the submitted video is unavailable)

Radiation Oncology- Dr Smith

I got a call back from Dr. Smith today. University of Iowa is a teaching hospital. As such, they have interdisciplinary case meetings on Tuesdays to discuss the more complicated patients coming through the U. It is a very “5 heads are better than one” approach which I appreciate. In my case, they discussed radiation vs Trans sphenoidal adenectomy. Radiology put the case up and although it is a viable option neurosurgery believes there is a better chance for better quality of life with their option. Each specialty believes strongly in their course of action. Of course, it is all up to me.

The risk of gamma knife radiation would be hypopituitarism (disorder in which your pituitary gland fails to produce one or more of its hormones) Ironically the symptoms of hypopituitarism are like what I am already experiencing with Cushing’s. I could end up on replacement therapies for the rest of my life.

The drawbacks of the surgery are the surgery itself is traumatic, the recovery is difficult, and the failure rate is high. My first surgery left me bedridden for a couple of months. I could not afford to take that much time off again. At this point taking a day off impacts but a month…impossible.

I am torn but I did agree to meet with the neurosurgeon before going ahead with the radiation treatment. I am still processing. Neither is a very high success rate and both have negatives. The drug therapy I am on is a temporary situation. The longest it has been reported to work is 5 years. Cushing’s has a high mortality rate with no intervention. I am only 36 and have an 11-year-old son. Five years is not enough.

What do you do when all options available are just buying time?

Neurosurgery- Dr Greenlee

Today I had my neurosurgery appointment. The surgeon came in, looked at my scans and reviewed my history. This is the same doctor who had been so sure surgery would be better than radiation. He told me this time the tumor is wrapped around my carotid artery. He told me there would only be a 60% “cure rate” by going through that horrendous surgery again. Along with a higher fail rate, it would also be much higher risk of complications or death due to the position of the tumor. Looks like radiation is in my future.

I do have a follow up appointment with my endocrinologist, Dr Ogrin coming up. We will be checking my cortisol (24-hour urine Yay!) to see if the Signifor injections are having any effect. We shall see.

Testing testing…1 2 3

Every Cushie knows the frustration of testing. Cushing’s is one of those really hard to prove diseases. Our hormone levels are tested at every junction of diagnosis and treatment. Cortisol is the main hormone tested for. Cushing’s can affect several chemicals but cortisol is the steroid that causes the most damage. There are several ways cortisol is tested. Saliva- you suck on a cotton swab in between 11pm and midnight and send it off to the lab. Blood- soooo many blood tests, AM cortisol, PM cortisol, and dex suppression. And of course, the pee- most often 24 hour urine.

Every result comes with mixes emotions. When testing for a diagnosis, if you get abnormal results you are happy that you are not crazy, there really is something wrong. So many people are told there is nothing wrong with them for so long, they start to actually feel crazy. When you are testing during treatment and get a bad result, then comes the fear. What next? What does this mean for my treatment options? Am I out of options? This fear is only slightly amplified by the anxiety that comes along as a wonderful side effect of the disease itself.

Results time:

Cortisol, Urine Free – per 24 h Result

175.5 Normal Range

<=45.0 Measure

ug/d

Last week I did a 24-hour urine test. This is seriously collecting every drip for 24 hours, the results of which I got today. Considering the recent consulting appointments, I’m once again not sure which direction to go. The test show my cortisol is still high, not as high as it had been in the past. My last 24 hour was May 10th and 263.4 ug/d. At that rate 175.5 looks pretty good. The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?

More questions than answers when test results arrive. This makes me long for the days of pass/fail pregnancy tests. At least then there was a definite answer and knowledge of options to follow.

Radio Roller Coaster

“The question now would be can my body take those levels long enough for the radiation to take effect? Is the immediate result of the surgery worth the 60% success rate if it can’t?”

These were the questions I had after receiving my last test results. My 24-hour urine cortisol had still been high. I had a follow up with Dr. Ogrin (endo). She was quite encouraged. My results were still above normal range but were much lower than my pre-medicated levels and my blood cortisol and ACTH were back down to normal range. This meant I got to stay on the Signifor and radiation was still a go.

FF to yesterday. I went to meet with Dr. Smith’s office for my pre-radio-surgery patient education and MRI. We went through the procedure and the nurse stepped out to grab whoever was taking me down to MRI. No one came back…we waited for just over an hour. I have never waited at this office before so I knew it was not good. Finally Dr. Smith comes in. I actually hadn’t expected to see him yesterday so my suspicions were confirmed. He sat down and told me my weight disqualified me from the gamma knife radiation. My options now are the full 6-week course of radiation or the trans sphenoidal adenectomy. The same surgery that I was told there was only a 60% change of success. To me, this is just not a viable option.

Every time I think there is a plan, it gets squashed. Have you gotten whiplash from my roller coaster yet? This disease got so far gone that I am too fat to be treated. I would not wish Cushing’s on my worst enemy. This thing might just kill me. All of my systems are stressed from the extra weight. My blood pressure cannot be regulated. Signifor has made me officially diabetic. Grrrrrrrrrrr!!!!!!!!!!

Reverse: Part way through this post Dr. Smith called. After discussing my case with his colleagues, he was reminded they were upgrading one of the radio surgery stations and it would no longer have the weight restrictions. I’ll have to wait till mid-December but Gamma Knife is still a possibility. This is truly good news because the success rate with radio surgery is so much higher than standard ration treatment.

Every disappointment is just a moment in time. You stay because you get the counter moment eventually. BUT if my life were a movie, I wouldn’t watch it, I’m just sayin…

Signifor

Signifor is the supposed miracle treatment for pituitary Cushing’s, the only drug officially approved to treat the disease. When my first surgery failed, I was not really wanting to get right into another one, Dr. Ogrin did some research and jumped on this as an option for me. My endo is not a Cushing’s specialist but she is very enthusiastic and willing to put in the work so her excitement was infectious (haha). There were a couple of hurdles to overcome before actually starting treatment. The medication is a twice daily injection. The cost is approximately 12,000 per month. In order to get the insurance company to cover it we had to do many preliminary tests and baselines for future tracking. There were the normal cortisol level tests (blood, urine, and saliva), EEG, and ultrasound of my gallbladder as Signifor often caused gallstones. During the ultrasound, it was found that I already had about a dozen gallstones. The stones were not irritated but since they were only going to get worse it was decided to remove the gallbladder proactively. OK, so about two months later we were ready to go.

I started the injections knowing that the major side effect would be the increase of blood sugar generally causing diabetes so when my blood sugar went up it wasn’t a surprise. As big as I am, I had never actually crossed the line to diabetic before. We started Metformin which made me sick as a dog. I still stayed on it for almost 2 months. It kept my blood sugar in normal range but I basically lived in the bathroom. YUCK! Now we are trying a Glipizide. It has been ok but I take it with food and my spikes are post injection so my sugars never stay level. The other side effects nausea and hair loss, I can live with I guess. Not a fan of seeing my own scalp but due to overheating I can’t do hats.

Also, the insurance will only pay for the drug 3 months at a time and then require proof it is working before they will agree to the next 3. I was really nervous because I really didn’t know if it was working. Some of my initial symptoms were easing up but nothing was cured and I was still gaining weight. Time for test again. Blood, urine, and saliva all told the same tale. My cortisol was lower than initial levels. It had been cut in half but was still well above “normal” range. I just got word that it was enough for insurance to approve to continue treatment. Woo HOO!

This is not a long term solution. It’s a treatment not a cure. It only works as long as I am able to get the injections and the side effects are hard on the body. About 20 minutes after every shot I get waves of nausea. No way around that one. I am now diabetic which may or may not go away. The expense is also not realistic long term. I currently have Medicaid but if I ever had to pay $12,000 a month myself it just wouldn’t happen. I am only 36 so we are talking just under $150,000 every year for a long time still and that is just the injections. My other maintenance meds (blood pressure, depression, anxiety) are a whole separate thing. When my cortisol does get to normal we may be able to ween off some of them, thank god.

So, for long term I still have to do either the trans-nasal or radio surgery to get rid of the hormone producing tumor. I’m pretty set on radio surgery. I spoke to Dr. Smith’s office today and they say the 14th or 21st. I’ll hear soon for a set date.

So, with all of the above you may be asking why bother with Signifor at all. I must admit I ask myself the same thing sometimes but then I consider what has improved since starting.

• My mental clarity has improved. I was getting increasingly foggy.

• I am on NO pain meds. The muscle pain just for pain sake is gone.

• I am stronger. I no longer feel as if I cannot get out of bed or off the couch. I may not have lost any weight but I can carry it around now.

• My ‘sweats’ are getting fewer and farther between. Before I would break into a drenching sweat regularly for no reason at all. It’s now down to only about once a day unless I’m at a store or get to cleaning my house and overexert.

• I can sleep through the night.

• I no longer am constantly fatigued.

• I have hope that one day I could be normal again.

These are the things I must remind myself of when I have a rough day. The kind of sick I am now is much better that my previous disheartening misery. 🙂 So I’ll continue until a cure or insurance stops paying.

Feb 2016 I had the gamma knife radiation…bunches of fun. No changes…

…except it is now January 2017. My symptoms are returning, levels back up, whatever Signifor was doing, it doesn’t seem to be any longer.

My doctor who was so excited for challenge in the beginning is starting to throw around gastric bypass, Korlym, and BLA, There is no end to the bullshit.

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In Memory: Kate Myers ~ 2014

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kate-fbkate

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

Steve, Pituitary Bio

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golden-oldie

 

I am a 43 year old man from South Carolina who has been a “big boy” most of my adult life and have been pretty healthy until early 2003 when i started noticing marked weakness in my legs. At the time I was on a diet and thought I was just deficient in something and started trying all kinds of supplements but nothing helped. I was kinda checking my bp here and there and it was very high so I decided to go to my gp because I was due for a physical anyway. He saw me and I told him about my leg and arm muscle weakness and he started asking lots more questions about my moods, vision, looked at my stretch marks and felt my noticable hump and said that it looks like cushings but probably isn’t because it’s so rare. He sent me to an endo “just in case, to rule it out”.

I have since found out how blessed I am to have had this gp and to be referred on the 1st visit. My endo agreed and started lots of tests (I never gave so much blood or peed so much in my life!) and even though after a CT and MRI they couldn’t see any tumors, he referred me to Drs. Vance and Laws at UVA Medical Ctr. who are wonderful! After an IPSS I was diagnosed and it was caused by a tumor on the pituitary.

I had transphenoidal surgery on Feb. 7, 2004 and after no change in my cort levels in 4 days they decided to go back in and operate on the other side which resulted in complete removal of the pitiutary. I never did “crash” so they sent me home saying I definitely would in a few days. It is now March 2005 and I am still waiting to crash. I never had to take steroids due to my levels being near normal and although I am due for another check-up in a month, I feel pretty good, having gained 90% of my strength back along with most other symptoms getting better. The wierd thing is that Dr Vance thinks that I am in remission from cushings but I am a rare case (I guess that makes me rare among the rare!). One year post-op and I am only on bp meds and thyroid replacement and testosterone replacement, that’s all.

I am a lurker here and was during my darkest days and appreciate all the help this site has given.

The recurrence of this disease seems to be high, among posters here anyway, but I am optimistic that I am through with cushings for good and just have to deal with hormone replacement.

 

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Kelly (Kelly Jo), Pituitary Bio

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pituitary-location

 

My official journey with Cushing’s started in May 2007 when I broke my hip by stumping my toe.  Dr fixed me and sent me on my way.

About two weeks later I developed a PE and was in ICU for 5 days.  It was there that the drs took note of my appearance (I looked very Cushinoid at this time) and that I had broke a hip the way I did.  They sent me to their clinic and the dr there took about 10 minutes of looking at me and asking me questions and told me she thought I had Cushings – which I had never heard of.

So off for test I went and it was confirmed.  At this point I had probably already had Cushings for 10 years but my past dr never once really heard my complaints and just told me I was fat and how easy it is to lose weight.

I had to wait till Feb of 2008 to have my first surgery since I was on blood thinner due to the PE.  We all thought the surgery was a success but three years later back it came.  So another surgery in Jan 2011.  Then again three years go by and it’s back.

This time it was decided that surgery wasn’t an option so we went with Gamma Knife radiation.  I am now in wait mod to see if it that worked and let me tell you it’s no fun.  Not knowing and not going to know for sure for a year or two is really hard.

The meds I’m on (Korlym) really make me sick too.  I’ve sometimes wished I had chosen to have my adrenals removed (which if this doesn’t work I will) and just be done with it all.

Some days are easier than others – some days I just want to say the heck with it all but I know that’s not an option.  I will never be done with it, as none of us will.

I have great family (the best husband every!) and friends that are there for me but let’s be honest they don’t really know and can’t really understand what we are going thru or how we feel.  I say I just want to be normal and me again but honestly I don’t even know what that is.  So for me I enjoy the good days and deal with the rough / bad days knowing that God does have my back thru it all.

Good luck to us all!
Kelly Jo

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Andrea (AndreaM), Pituitary Bio

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I suffered from Cushings when I was 9 years old. I had pituitary surgery, bilateral adrenalectomy (back in 1988 when it was not laparoscopic), then 2 more pituitary surgeries as my tumor grew and regrew too close to the optic nerve. My last pituitary surgery was followed by Gamma Knife Radiation. That was when I was 19. Thankfully, since then, my ACTH levels have been normal, so there is no evidence of regrowth of pituitary tumor. I just turned 36.

The good news is that despite needing repeated pituitary surgery, I recovered well from the Cushings once my adrenals were removed and I was on daily replacement steroids. I have gone on to have a fairly normal life, including 4 children with no help needed in conceiving. I guess the doctors consider this basically a miracle considering my irregular cycles and all the pituitary surgery. I did end up with diabetes insipidus from the last pituitary surgery, which is probably the most uncomfortable (and expensive) lingering problem. It can be very uncomfortable at times, particularly when pregnant is is difficult to get the right dose of DDAVP.

Not sure what prompted me to look online for others with Cushings Disease/post adrenalectomy, but I have never in my life met anyone else with my condition and my endocrinologist says she has only one other patient with adrenal problems, but that person still at least has 1. Of course doctors can’t tell you who their other patients are anyway. Obviously when I was actually suffering from Cushings there was no Internet. I guess it would just be interesting to compare notes about living without adrenal glands. Since I was so young when it happened it is all I’ve known and I’m thankful for how basically normal my life is. I see too that I can encourage people that although I do take 3 medications multiple times daily, I basically have a normal life, including 4 normal, healthy children ages 9, 7, 5, and 2.

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In Memory: Kate Myers

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kate-fb kate

 

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

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