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Jules, Pituitary Bio

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golden-oldie

 

Originally from September 25, 2008

My journey with Cushing’s started six years ago at the age of ten. It started when I developed a duodenal ulcer. It was unbearably painful (this is coming from someone with a very high pain tolerance) and I have extreme stomach problems for at least 4 years following. I went to a gastroenterologist and got it somewhat under control.

This went on until the age of almost 15 when I just couldn’t take it anymore. By this time I had struggled with a very mentally draining family issue that had occurred. I became very irritable and depressed and just assumed it was from this hard period of my life.

I was shocked one day to see purple stretch marks running down my abdomen. I had been rapidly gaining weight and associated them with that. Always being an average size girl this weight gain both freaked me out and made me even more depressed. I was very irritable and unhappy with myself. I don’t overeat and am pretty active being an equestrian rider and working out at least twice a week. It made no sense. I knew something was wrong but had no idea what. My face has always been round but lately it was larger and red.

I decided to go to a new gastro. and was suprised when he felt the base of my neck and told me my thyroid was very enlarged. He quickly referred me to an endocrinologist who diagnosed me with hypothyroidism. I though I’d finally found the answer and expected my new medication to solve my problems.

To my dismay the symptoms only got worse. I was also now noticing fatigue and weakness.I gained 25 pounds that year when I should have been losing it after starting the medication. I was starting to get thirsty and drink all the time. I urinated frequently and sometimes had leakage. My periods from day one were very intense and I had horrible PMS but now they were becoming very weird and I am starting to lose them. I have sweet cravings several times a day and if I miss a meal by an hour I get an intense headache sometimes accompanied be nausea. It is now difficult for me to concentrate on schoolwork and I am extremely fatigued. I can’t bend my joints for long before they tighten and ache. I can no longer bend over without having bad pains when I straighten up again. Some nights I have an awful time trying to sleep and I feel as if life is growing harder and harder by the day.

After dealing with this endocrinologist for a year and having him ignore my other symptoms by telling me that my thyroid levels were normal I couldn’t take it anymore. I knew I was very sick deep inside.

I scheduled an appointment with my now lifesaver. My first appointment with Dr.Borg was the best day of my life. He did a full body exam (which the other doctor hadn’t) and immediately told me that I looked like a person with Cushing’s disease. He was completely shocked when I told him that the other doctor hadn’t tested or looked at anything other than my thyroid.

Advice to anyone who might have this disease is to insist that your endocrinologist runs as many blood tests possible and make sure they do a physical exam. This is what I think “saved my life”. I was told by my new doctor that I would have developed type 1 diabetes within 3 years.

After the tests showed that my levels were way off I had an MRI which confirmed a tumor. I should now say that the best day of my life was when he told me that the MRI showed that I had a tumor and this was very fixable. I was so relieved. Now I am seeing a neurosurgeon and am awaiting news of when my surgery is. What I would like to say to anyone struggling with this disease is listen to yourself over anyone else. I had countless doctors tell me that I needed to eat less and work out more.

Deep down inside I knew there was a reason for my weight gain and for the hurt I lived with everyday. I knew that life was better than this. I pushed my parents to bring me to as many doctors as it took until we found the one who could find the culprit. You are the only one who knows how you are really feeling. I know it’s hard but hang in there and know that there is a light at the end of that dark tunnel.

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Terri (Terri), Adrenal Bio

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adrenal-location

 

I started having issues in my 30’s. I noticed my skin getting splotchy and my periods became horribly painful and irregular. I had migraines and started gaining weight. I went to my doctor who said I was just getting older (again 30ish). The weight kept creeping on, the periods got worse. Again I asked my doctor , again it’s part of aging. This went on for years. I finally changed doctors and ended up with a hysterectomy, the doctor assured me this would fix things. It didn’t.

A year after the hysterectomy I get my first ambulance ride from my doctors office to the ER. They thought it was my appendix . The ER found nothing so they sent me home. I have sever nausea I , body shaking chills and sever side pains. They sent me to a gastroenterologist who ran tons of test and found nothing. BUT as they were reviewing my latest test results by phone the mentioned that my adrenal cyst hadn’t grown any. I said what adrenal cyst? They said throne that was in the ER report. This had never been disclosed to me. They referred me to a urologist? I skipped the urologist and looked for a endocrinologist. My symptoms had multiplied in this time. I now had a fuzzy face, fuzzy vision, more weight and stomach tenderness to the point it hurt to wear some clothes.

I saw my endocrinologist and he ran a ton of test and came back with Cushings. I just finished my second MRI, this time they are looking for a pituitary tumor. I am waiting for results to see if I have the pituitary issue as well as the adrenal gland cyst. Apparently my adrenal cyst was large enough to cause cancer concerns , but luckily doesn’t act like cancer. Happy that! I am now in my 40’s and it has taken eight years to get a diagnosis or someone to take me seriously! So don’t take NO for an answer!

 

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Jane (Jane), Undiagnosed Bio

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undiagnosed3

 

Hi. I am retired RN in Oklahoma.

I have undifferentiated connective tissue disease, chronic kidney disease and peripheral nerve disease in arms and legs.

I had an autoimmune disease in 1972 called Guillian Barre that left me with residual neuropathy.

Recently my PCP noticed I had hyperpigmentation and thought it might be Cushing’s. My ACTH was in the upper 70s, serum cortisol normal. My weight has been out of control for years.

I did 24 hour urine with normal result. My PCP ordered MRI and showed suspicion for 6 mm adenoma left side of pituitary. Saw endo who ordered 1 mg Dex test. To see neurosurgeon in Dec.

Have also had some severe headaches and intermittent nasea and vomiting (both unusual for me). Also unreasonable emotional outbursts totally out of character for me. If I have Cushings it must be cyclic or subclinical. I haven’t done my Dex test yet because I just don’t know if I should do it when I feel really bad or really good. I’ve felt like my life has been a roller coaster of highs and lows for over a year now.

My endo said if my Dex test is positive she would need to send me to Mayo because she has never dealt with this and there is no one in Oklahoma she can send me to. I have read many bios on this site. It’s crazy how long it takes for people to get diagnosed. Literature says timely diagnosis is so important in relationship to good outcomes. I don’t have the Cushings striae. I do have really bad swelling and pain, fatigue. I’ve been on a daily diuretic for almost 30 years. If I miss it my face and hands swell up and one eye gets red and tears. I feel like my problems began after I had my last child 30 years ago.

Sending good thoughts to all of you out there and what you have and are currently going through. There are lots of heroes here, and even if my problems turn out to be something else, this website has been a life savior. Thanks so much for being there.

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Sherry C, Pituitary Bio

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golden-oldie

 

 

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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Don S (Don S), Undiagnosed Bio

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My name is Don.  I am 35and I am a career firefighter with 14 years on the job.

10 years ago I was injured badly at a fire and almost immediately noticed a change.  My skin began peeling off and I began gaining weight.

I knew about cortisol and its effect on the body because my mother passed away from Cushings at 46 after years of taking steroids for respiratory problems.  My doctors dismissed my issues as stress following the trauma.  My accident happened in March and by July, I had gained  80lbs.  I was constantly fatigued and developed acne all over my body.

A year or so later, I began having stomach issues.  Nausea and Reflux were with me everyday.   I continued to have high serum cortisol throughout the past 10 years but each time, it suppressed to just below the 1.8 threshold with dexamethasone so my doctors just dismissed it as stress.

In 2012, the dizziness and blurry vision began.  My spine is weak and my joints hurt constantly.  My legs are so skinny and weak, they shake when I stand and my heart races from any exertion.  I managed to continue working until a year ago when I accepted that I was putting myself and others at risk.

For the past year I have been paying guys to work for me in order to keep my job and insurance.  I worked hard for this career and promotions and I will not give it up without a diagnosis and confirmation that I can no longer do the job.

I have a new Endo now and she ordered a Urinary Cortisol.  It came back 4X higher than the upper limit.  She is convinced I have Cushings and it isnt just stress.  I have the following symptoms.  Weight gain of over 100lbs, Long purple stretch marks on my flank, side, and groin, Blurry vision, tachycardia, weak limbs, tremors, anxiety, puffy face, dizziness, stomach issues.

I am hoping after 10years of suffering, I may finally have my answer and that I can begin getting my life back.  I have a wife and 3 year old that really count on me and all I have been doing is letting them down.  Our lives are on hold because we do not know what the future will bring.

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Catherine B, Pituitary Bio

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I’ve had random symptoms off and on for years (almost two decades now, from about the age of 15) but didn’t realize they were related to illness, or that I had one overarching disease causing them all.

Looking back, the onset of my disease was in my teen years.  I gained more than 60lbs in roughly a year’s time without changing diet or activity level.  I developed stretch marks that ran from my knees to my elbows (and everywhere in between!).  I started losing my once-thick hair.  I developed horrible acne.  I went from being an early morning riser to staying up late at night because I was wide awake, and waking often throughout the night.  I went from being happy overall to being anxious and depressed for no apparently reason (and medication had no effect on either).  I was told it was either all in my head or all my fault (by varying people, some directly, some implied) and I internalized that and just assumed I was too lazy and had bad genetics…  I TRIED to exercise but would feel so sick afterwards that I couldn’t make any gains, I joined a gym and put myself on a diet in high school but none of it made any difference.  When I brought up my symptoms to doctors, they could never put it together, often blamed me for them (Just diet and exercise and it’ll go away), and sometimes treated me like I was just plain crazy.  I still don’t go to doctors unless I have to because of those experiences.

After getting married, I had had some complicated pregnancies…but it was more than that.  I would get flank pain and drop into “lows” that I didn’t understand, complete with feeling cold, diarrhea, weakness, exhaustion, nausea, loss of appetite, and extreme weight loss (muscle loss, more like it).  I had high cardiac output but low blood pressure and a high pulse rate.  I’d go into tachycardia (140 bpm +) for NO apparent reason and had all kinds of cardiac monitoring done.  My blood pressure was labile, but usually low, and still I’d end up with severe complications. Breastfeeding wasn’t going well despite the “mechanics” and flow being there…my babies were never satisfied and I always felt sickly.  The differences were drastic (but a bit graphic to share here publicly).  I seemed to get pregnant at the drop of a hat (opposite of the norm for Cushie women), but my body seemed unable to deliver on it’s own.  My body just didn’t react like it should to anything.  I even once had an episode post-partum that now I know was likely some mixture of adrenal insufficiency and/or my hypoaldosteronism.  I was left alone to sleep it off (just thinking about it now scares me), but I didn’t know any better at the time.

Then about 3-4 years ago I hit this point where I just had the feeling that if I didn’t get whatever was going on under control, I’d end up with something more permanent and dangerous (like cancer or diabetes).  I still got seemingly random symptoms but I had too many of them, and they were getting worse.  I also started to notice that my good days and bad days seemed to come in cycles.  3 days, 3 weeks…I’d be good for a while, then worse for a while, then good for a while.  I had already eaten “clean” and kept myself active, so I decided to try “nutritional balancing therapy” and started taking a karate class multiple times a week (burns TONS of calories, fyi).  They ran some tests for various vitamins/minerals, and said I had adrenal insufficiency.  The diet I was put on was a higher fat (good fat), higher protein, TONS of veggies diet (basically we just cut out my grains/starches and added in more fat) but between the diet and the exercise, I became so ill I couldn’t get off the couch for about 4 weeks.  I had to give up both and it took some time to recover, but I never got back to where I had been, not even close.

I started studying the natural healing term “adrenal fatigue” and came to the realization that I had done everything to correct AF but was still going downhill.  I had tried supplements, diet (years of it), everything.  I became pregnant unexpectedly and was active, even tap-dancing with a major part in a musical at 20 weeks pregnant.  I would have these ups and downs that seemed random, but when I finished the musical, I hit a new low and never seemed to come back from it.  I just became more and more exhausted.  To the point that certain days I could *feel* the energy it took to hold my head up to watch a movie with my kids.  The CNM and OB both said I was just depressed and upped my dose of Vitamin D.  They wanted me to go on antidepressants, and I refused.  I knew the difference between not wanting to do things and not being able to do them. I called a doctor that specialized in Adrenal Fatigue in California after having read through his website, and he basically said that I would continue to get worse, but that he wouldn’t treat me because of my pregnancy.  No help, no suggestions, he told me “come see me if you make it out alive.”  I obviously needed outside help from a true expert.

I had joined an Addison’s support group online about this time, and they helped me learn a lot about AI and Addison’s, about symptoms, testing, about Hashimoto’s, etc.  I am SO grateful to these women who supported me and taught me much.  They never questioned if I was just depressed or if I was really sick, and they were so kind they WERE the sanity that I needed so desperately.  I was getting nowhere with local doctors, my husband believed me and was as helpful as he could be, but it was taking a big toll on us, and when we asked for help from our local church leaders with cleaning our home because I no longer could do it (and my husband was so overwhelmed doing everything by himself), we were threatened as a family and refused help.   I was desperate; I was hurting.  My whole family was struggling because of this disease and the treatment (and lack thereof) we’d received from doctors and so-called friends.

These Addisonians had been talking a lot about one specific endocrinologist that specializes in pituitary disorders (who also happens to be in California).  In complete desperation, I emailed him, knowing the chances that he’d take me or that I could even get in to see him before delivery (due to travel restriction based on gestation) was unlikely.  But I was scared of what a delivery with untreated Addison’s might bring (I knew the stats and knew I didn’t trust the local OB), so I emailed explaining my situation and sent my current lab work (I had to go to my GP because my OB wouldn’t even test my thyroid or iron!).  I knew it sometimes took weeks to get a response or get in to see this doctor 3 states away, but I sent the email on February 8th, and heard back via email that same night from his office lady.  She was sure he could help me, and suggested I schedule an appointment right away, and was waiting to hear back from him directly.  He responded that he did see something amiss in my lab work, and I was scheduled for an appointment and buying plane tickets.  My appointment was on Valentine’s evening and a friend flew with me because I was too weak to do it alone, and because my brain was too foggy to feel comfortable understanding and responding to everything in the appointment, not to mention I was super pregnant with my 6th child!

I went in SURE I had Addison’s Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact.  I came out with a LOT of testing for Cushing’s Disease.  It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol.  You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands.  While the tumor is actively pumping out ACTH, it can shut down your own pituitary’s normal production because the pituitary feedback says there is already too much cortisol in your system.  Then, if/when the tumor “kicks off” (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in.  This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.

I was unprepared for the change in direction at my appointment.  I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing’s Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms.  I have cyclic Cushing’s Disease.  I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing’s (she refused treatment and was a stubborn, intelligent women who got her way).  I had read through some information with my husband at that time.  We had concluded that it was a possibility, but I didn’t have enough of the symptoms (maybe half?) and decided that I wasn’t nearly sick enough for that to be the problem.  How wrong we were!  I certainly wasn’t as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.

At my appointment I was also told I had hypothyroidism.  He ordered more of those tests (to get a trend) and an antibody test.  It was found I have Hashimoto’s Thyroiditis (an autoimmune thyroid disease) and was put on thyroid medication.  My ferritin level (stored iron) was so low it was in single digits (he wants it around 60) and he said that had I not been flying home the next morning, he’d have had me in the hospital for IV iron infusions.  Needless to say, I was put on iron –lots of it.  My vitamin D was still lower than he’d like despite having been on treatment, so he switched me to 50K iu’s of D3 weekly (My OB had chastised me repeatedly for taking D3 instead of D2; Ha ha!).

I had to wait for a while after my pregnancy to allow my body to normalize before doing my Cushing’s testing.  I first tested by date (randomly, basically) and got a few marginal highs, but mostly normal test results.  My pituitary MRI was read clean.  Dr. F told me he didn’t know what was wrong, but that it didn’t look like it was Cushing’s because of the testing.  I was not prepared for that, and just ended the conversation in an emotional mess.  I was emotionally, mentally, and physically exhausted and didn’t plead my case.  I didn’t have insurance or the money to test more, even though I was pretty sure I needed it.  And looking back, had I asked, he probably would have obliged.

I decided to again try natural healing methods.  Nothing worked, and some things (extended juice fasting, for instance) actually made me much worse.  Every time I hit another “low”, it seemed to become my new normal…and that was scary.  I kept losing more energy and strength, more of my mental ability, and each time I couldn’t imagine it getting worse, yet it always did.  (I still haven’t learned this lesson!)

About a year later, after a lot of prayer and thinking, after I’d exhausted most natural treatment methodologies I felt willing to try, I realized I did indeed need to go back and push for further testing, and test by symptoms.  Mentally and emotionally I was in a much better place, and while I had recovered a bit after my delivery, I had started to again slide downhill despite my best efforts.  I came up with a game plan, and the hope of it made the effort required seem possible.

I emailed Dr. F to ask about further testing, this time by symptoms, and there was no pushing or arguing necessary!  He gave me more sensitive testing this go round, and told me to test as much as it took.  He believed me!  It was as if the way just opened up for me this time.  I was uninsured, but I applied for the Cushing’s Assistance program through NORD (The National Organization for Rare Disorders) and was accepted.  They offered to cover the costs of testing, doctor’s appointments, and travel needed for the same, that would lead to a diagnosis of Cushing’s Disease.  I was in public when my husband called and read me the letter, and I started bawling right then and there in the shopping isle.  It was an answer to a prayer I didn’t even think to voice.  I then called to share the news with family and friends and bawled again, scaring yet more customers!  Having no insurance, this made everything possible.

Tracking my symptoms wasn’t a very easy task.  I went totally OCD on them, and still I was only somewhat successful in my efforts. I could get the overall trend, but the day-to-day was confusing as all-get-out.  My testing was also complicated by living in Alaska.  I could only turn in tests 4 days a week because they had to fly out to the labs in Seattle, WA and beyond.  It took about a month to get each result back.  Add to that a head cold that killed my cortisol levels for 6 weeks, and it took me a few months to get sufficient high labs even with my 2-page-wide spreadsheet of symptom data.

In that time, I also made friends on the Cushing’s-Help website and Facebook groups.  I learned a LOT of things from them, and one friend in particular likes to “read” pituitary MRI’s the way I like to “read” fetal ultrasounds.  She looked at my previously “clean” MRI and said that in her lay opinion, it was anything BUT normal.  As a favor, her neuro-radiologist also took a look at my MRI, and was so kind as to send back pictures with ARROWS of pituitary adenoma’s and suspicious areas on my MRI to forward on to my endocrinologist.  As it turns out, my doctor hadn’t read the disc himself and had just read the radiologist’s report.  He looked at the disc and agreed it was not normal, then sent me a message stating I needed a new MRI (it had been over a year at this point and my previous MRI still had some of that post-partum “rainbow” shape to the pituitary) and that it should be read by a neurosurgeon this time around.  JOY OF JOYS!  This brought me even more hope!  He said SURGEON, not just himself…that meant I was getting so close to that diagnosis and surgery clearance –to getting help.

I scheduled my MRI trip (can’t do a 3T dynamic here), and decided to schedule a face-to-face with my endocrinologist again while in the same city.  NORD paid for the flights, reimbursed me for the cost of my doctor’s appointment, paid for the MRI, and paid for my hotel room.  My husband came with me this time, and it was the best doctor’s appointment I’ve had in my life.  I was still nervous that somehow it wasn’t enough, or that the MRI done the day before my appointment would miraculously have become normal again.  That was not the case.  My MRI showed two possible adenomas on opposite sides of my pituitary amongst other things, and my 7+ diagnostic-level high labs were sufficient…and it felt AMAZING!

Who knew we’d be so excited to hear I was diagnosed with a deadly disease?  That we’d shout for joy and clap our hands at finding multiple tumors in my head?  I had a smile that wouldn’t go away.  The medical student shadowing my endocrinologist hadn’t seen the diagnosis side, where patients are so relieved to have an end in sight, to finally be getting help and have a chance at getting better, that they are happy!  I also wore my “Does my pituitary gland make me look fat?” shirt to this appointment, so we were joking, taking pictures, and having a grand old time.  He gave me permission to share the picture of us, and without prompting pointed to my head for the next picture saying, “It’s right HERE!”  My endocrinologist is generally stoic, quiet, caring yet professional, dealing with very ill people with a very serious disease and he is often their last hope at life…so I feel myself privileged to have had the opportunity to see him in-person for my diagnosis appointment, and to see this other side of him.  I hope he felt our gratitude as well.

The “pick whose going to cut into your head” decision took a while.  I was offered 100% coverage through a quality hospital and with a quality neurosurgeon for anything done at their facility, but the endocrinologist there wanted me to start my testing process ALL over again with them, at my cost at home.  I was not willing to start over after all that hard work and with as quickly as I was deteriorating, so I decided to wait till January when the new health coverage laws were in effect and I could again get insurance without preexisting conditions clauses.  I was able to be referred to my first-choice of neurosurgeon’s and placed on Ketoconazole to help lower my cortisol while I waited.

I had pituitary surgery on February 5,2014 (I am writing this 4 months post-op).  They were able to find and remove the more obvious of tumors on my MRI, and explored the rest of my gland, finding no more tumor tissue.  My pathology report came back as “hyperplasia”, meaning I had a bunch of individual scattered cells that were a tad overgrown instead of a solid, encapsulated tumor.  This kind of tumor has a very low success rate, since the entire gland can be diseased, but it can be impossible to see and remove every one of the scattered cells.  We knew early on that it didn’t look like remission based on my symptoms and post-operative lab results.  I was off my replacement hormones within a month, had to wait for my cycles to normalize a bit (I guess all that pituitary fileting was noticed by my pituitary even if I wasn’t cured! lol) and then I could begin retesting for re-diagnosis.

In April I had a post-op MRI and follow-up with my neurosurgeon, who said I did not have a visible target on MRI, and with pathology report of “hyperplasia,” I am not a candidate for repeat pituitary surgery or radiation therapy.  We now know that a bilateral adrenalectomy (BLA, the surgical removal of both adrenal glands) is in my near future…but I need a multitude of lab tests to prove I need it, and give a surgeon enough reasoning to permanently remove two very vital little organs and put me on life-sustaining medication instead.  It is a drastic surgery for a drastic disease, but it is my best chance at a lasting cure with the least amount of hormone replacement and further damage to my other organs.

During this same trip, I was able to attend the Magic Foundation’s adult convention just a few hours from my follow-up appointment.  What an amazing event.  I learned many things, but perhaps more important to me, I was able to meet other people who had my disease, who understood what I was going through, had been there themselves, etc.  They just knew!  I felt at home.  I consider it quite telling that they switched the schedule of the conference to part-days to accommodate our fatigue…  The trip was hard on me, but I am SO glad that I went.

In May I started testing in earnest for my re-diagnosis.  After intensive testing one week, and hit/miss testing the next (I was cycling lower and thus stopped testing), I now have 5 diagnostic-level high lab results.  Because of the severity and permanency of this next surgery, my endocrinologist has asked me to continue testing.  I will start testing again during my next high cortisol cycle in the hopes of doubling the number of diagnostic-level highs that I have and move on to the surgeon referral process.  It’ll take a couple of weeks to get my lab results back (Oh, the agony!), and another couple of weeks to get my endocrinologist appointment and surgical referral if I do indeed have sufficient highs.  I’m *really* hoping he won’t want me to go on medication prior to surgery as I’d like to move forward towards a permanent cure and health!  Not to mention, my deductible is met for the year, so this year would REALLY be nice on my already broken budget.

With the new goal in sight, and some diagnostic testing that proves I’m still ill, we are hopeful.   I’m now nearly bedridden due to the physical exhaustion, but I’m starting to allow myself to plan for a near-future in which I am somewhat functional and active again.  I can’t wait!  Once again, it sounds silly to be so excited and wishful about having surgery to give me Addison’s disease, just as it was to be thrilled to be told I had a tumor, dreaded disease, and needed brain surgery.  But, I’ve been sick for so long and becoming more and more debilitated and sick the longer this has gone on that I am excited at the prospect of any semblance of improvement, health and normalcy!  (Okay, within reason…I am well educated and using logic, etc on this, but…YAY!)  I can feel it is within my reach again.  I’m on the path and moving forward.

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Here is Magic’s video of me: 

And the picture I spoke of in my story is attached (Dr. Friedman did give me verbal permission in-person to share it online –facebook, etc.  I imagine he’d be fine with it published in an email?)

I will include a before/after onset collage of pictures as well.  Use whatever you like.

Catherine blogs at http://muskegfarm.blogspot.com

catherine2

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Archived Interview with Kathy C, Pituitary Patient

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Kathy was diagnosed with a pituitary tumor in 1991.

At the time the only symptom she was aware of was a severe headache. She had a transsphenoidal resection followed by radiation therapy for 23 days. They said they could not remove all of the tumor.  She is now on Signifor and Cabergoline.

Read Kathy’s entire bio at https://cushingsbios.com/2014/04/27/interview-may-7-with-kathy-c-pituitary-patient/

Listen to Kathy’s Interview here.

Kathy’s Interview is also on the CushingsHelp Podcast

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