During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.
Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.
During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.
I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.
At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.
January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.
This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.
It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.
By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.
I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.
After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.
I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.
When I came across this website, it was like other people writing my life story.
I was diagnosed with hypothyroidism 15 years ago, with depression about the same time. Once on thyroxine, I improved.
About 8 years ago, I started gaining weight, especially around the stomach. Then as time passed, other symptoms appeared. The depression was coming back worse than ever, despite increased doses of anti-depressants. I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.
I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests. The only thing abnormal was low iron. I tried iron supplements, which do not agree with my stomach, so had to abandon.
Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.
I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.
I finally got my local doctor to send me to an endocrinologist in March this year. She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test. When the dex test came back negative and I went back to see her, I just cried my eyes out. She referred me to see a psychiatrist, and said she was done with me. The usual – you can’t have Cushing’s, its too rare. No urine tests, nothing.
I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s. But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order. So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.
There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?
Hello, My name is Sarah. I am currently researching and undergoing test related to Cushing’s. I am turning 30 this year and have decided I have ignored my body long enough.
I was diagnosed with 2 pituitary tumors at the age of 15. At that time I was having horrible headaches, neasea on a regular bases, balance issues, gained 80 pounds in 4 months, and some crazy stretch marks.
The last time I saw a doctor for the issue was when I was 18 because they could not figure out how to treat me. Since then I have gained 240 lbs., have hypothyroidism, have had 6 carpel tunnel surgeries, and have issues with blood sugar levels. I am a large woman but do not eat like one…. I swear. My husband and I are doing a diet diary to take to the pituitary center with us. Sounds crazy I know, all I have ever heard is that I control my weight , so stop eating.
I saw a TV special about Cushing’s and my husband and I both agree that is me. The woman that they featured , my body is shaped just like hers. I hope that I can find a dr. that will listen to me.
Hello, I am a 33 yearl old female who has been living a nightmare for the last 5 years as I have seen my total health delcine before my eyes.
I have gained massive amounts of weight with no medical reason, my monthly cycle has left me, insomnia, severe depression and anxiety for no reason, infertility, allmy obesity is in my stomach and upper back, I have developed sleep apnea from having a thick neck, I have the infamous buffalo hump, hair loss of 50% of my hair, I cannot lose weight no matter what I do, I take these weird week spells where I cannote even get out of bed, hair has literally stopped growing on my legs and other areas of my body, except on my chin and abdomen where I do not want it to grow, my face is round and red and people who see me cannot believe this transformation my body has undertaken and I then have to hear how could have let myself go? If you would just stay on a diet longer than 2 weeks? I am glad that my children are not fat? I could go on and on the emotionally abuse I have had to enudre the last 5-6 years.
I have exercised and exercised to no improvement other than I feel exhausted, I eat a very strict diet, my Mother had to move over here with us because I no longer can care for my children and need her help. I have medical bills back in the states that are like science fiction.
I finally got diagnosed with hypothyroidism and still feel horrible, I have to take Toprol XL for heart palpitations without no explanation from where they are coming from it is so much easier for some physicians to keep just giving you pills instead of trying to figure out what is the root problem.
I now live in a foreign country where it is even harder on me, but I do have an appointment after 10 months with an Endocrinologist here in Doha tomorrow and on November 9th I have an appointment to go see a Cushings Expert in the UAE in Dubai his name is Dr. Taher so I will give an update after theses two visits.
Jennifer
Doha, Qatar
Update December 30, 2007
Hello My name is Jennifer and I am a 33 year old American living in Doha, Qatar (Middle-East), I was finally sent to Dubai and seen an Endocrinologist and he did an MRI and i have two pituitary tumors and he believes that I do have Cushings so he referred me to see Dr. Bill Ludlam, MD in Seatte in January 2008 to get further testing.
I know that there were something worng with me a long time ago but I never knew it was something as stealthy as this disease possibly, I have all the classical symptoms. Also the tesing is so so expensive in the States so I am waiting for the Qatari Governments approval for my medical expenses in Seattle.
I will giva another update soon.
Update May 28, 2008
My current update. I did go see Dr. Ludlam with no avail since my insurance would not pay for him but he did state that I needed further testing so after I left Washington I went to my friends house in Alaska just to have time to think since my husband and I are seperated.
I decided to go back home to West Virginia to be with my family for support and see a Doctor there bringing all my reports and scans to him from the Dr. in the Middle-East and Dr. Ludlmas suggestions.
I seen Dr Yakub and they did tests and all of them came back positive for Cushings my urine, salivory and blood several times came back positive and high for Cushings , also my MRI in January showed that my pituitary tumors are still there.
He is a good doctor and is located in Huntington West Virginia and he not only practices Endocrinology but he is also a Professor of Endocrinology at Marshall University School of Medicine. I will keep all of you updated and thank you so much for your support through this trying time in my life and I pray that all of the Cushies on this board get diagnosed, treated and healed.
Update July 10, 2008
I have finally got my diagnosis and I am heading to the University of Virgnia in Charloettesville on July 23rd! I will update what happens from there. I would also like to say thank you to Christi who has helaped me and talked to me through this difficult time.
Update September 19, 2008
Hello Everyone I am so sorry that it has taken me son long to get back with you I had my Inferior Petrosal Sinus Sampling done this week at the University of Virginia in Charlottesville and it is confirmed I have pituitary dependent Cushings and I am scheduled for surgery the first week of October with Dr. John Jane Jr. They are great at the University of Virginia and I am so thankful for them. I am hoping that someone will take me under their wing while I am getting ready for surgery and give me some advice. I would really appreciate the help.
Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.
I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.
My normal doctor knows there is something wrong however none of the endo’s I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.
My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.
In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only “moderately” high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.
Everytime I eat, people stare and you can tell they think I’m gross. People make nasty comments about my weight and say I should exercise. I don’t do much anymore because I just can’t manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can’t help how hopeless it feels.
I am so grateful for this, for being able to vent with others that actually understand what its like.
A Golden Oldie originally from Tuesday, October 7, 2008
I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.
I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.
They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.
Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.
In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.
I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.
So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!
Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.
My name is Lauren. I am currently being tested for Cushing’s Disease. I’ve read that every patient is different, and from what I can see it is completely true.
I am not entirely sure how long ago my story started. I began seeing my family doctor in high school because I was having menstrual issues. At the time my Mom’s biggest concern was that I was having very irregular periods. She had also noticed that I had been growing hair on my face, under my chin and side burns. I was referred to two different specialists – an Endocrinologist and a Gynecologist to try and determine that root cause.
After multiple appointments with both specialists, the Endocrinologist said that I was on the edge of being Hypo(?) Thyrodism (it’s the one that makes you gain weight) and the Gynecologist said that I had PCOS (or PCOD – the name has recently changed, but I prefer to think of it as a Syndrome instead of a disease). I had a large amount of weight gain between grades 10-11, bumps (or cysts) all over my ovaries, facial hair growth and very irregular periods. I disagreed with the diagnosis.
Even at the age of 15 I felt that it was not the right diagnosis. I had friends with PCOS, and every one of them had insanely painful menstruation and small breasts. This may sound silly, but it was honestly the boobs that made me feel like the diagnosis was wrong. I may have small boobs for my family, but I still carry around size D (or DD depending on my weight) breasts. Either way, the voice of a 15 year old does not tend to carry far and I ended up being prescribed Glumetza (Metformin – used in Diabetes patients) and Yaz (Birth Control).
The Glumetza has always made me sick. I can’t eat my favourite foods with out feeling sick, if I can even get it in my mouth. The one thing I’ve always told my family is that it’s like being pregnant 24/7 with no bun in the oven. I’ve been on and off the medication for years now.
About 6 months ago I went in to see my family Nurse (I’ve stopped seeing my family doctor since, as the diagnosis is always “Lose weight”). I had been having chest pains while working out. Now although I say chest pains, it was more like severe pressure in my left shoulder. I would get dizzy and light headed while running with my sister, and on one occasion I threw up (Just bring it up to my sister, and she will start describing the cheesy spagetti coming flying out of my mouth and on to the yard of one our neighbours.. she still will not run that way).
At the point Erin (the amazing family nurse) also mentioned that my blood pressure had been high, not just recently, but for the last year. Furthermore I was hypertensive. I had heard this term before because for the last year my Mother had been going through her own set of genetic heart issues. My Mom had just been diagnosed with Coronary Artery Disease (genetic form of it) and Superventrical Tachycardia (SVT – PSVT specifically). My Mother was also Hypertensive. This was concerning to Erin, as it had already been determined that my Mom’s condition was genetically given to her.
After monitoring my blood pressure for 3 months, with no improvements I was referred to an Internalist who also specialized in Cardiology. He’s great, just for the record. It’s not very often I that I get to speak with a doctor who understands sarcastic humour. Dr. A-R immediately removed me from Mavik (Blood Pressure Pill) as it was actually doing more harm then good. The palpitations that I was having on those pills were beyond intense, and the worst I ever had. They were never long lasting, never lasting more than 20 seconds at absolute most, but I can definitely say that I do not envy my Mom. Dr. A-R diagnosed me with SVT after a 14 day heart monitor. He literally called me the following Monday after I handed the monitor in. He immediately changed my medication from Mavik to a Calcium Channel Blocker. I still have heart episodes but not nearly as many or as bad as when I was on Mavik.
At my 3 month check in last week he said that he was concerned, because he did not believe that the blood pressure and the SVT were actually connected. He believes that I also have Cushing’s Disease. I had some blood work done a few weeks back that showed a very high number for a stress hormone in my blood. Now I am new to this whole thing, and my memory is horrendous, so I honestly do not remember what that hormone is called. I laughed when he said it though, for two reasons. 1. When I was diagnosed with PCOS, I was told that my body didn’t make hormones, hence the thoroughly detested Glumetza. Apparently that’s a different hormone. 2. It’s a stress hormone? Seriously? I am stressed 24/7 between work, home and my constantly changing relationship with the love of my life. I asked him if that would affect the number. As all of you know, it didn’t. At 8am when I had my blood work done, it shouldn’t be that high. He asked that I do a 24 hour Urine test. I waited until this weekend to do it, and I can honestly say that I did not enjoy a single moment of that test.
My Symptoms:
> Weight Gain
> Facial hair
> Irregular Periods
> High Blood Pressure (Hypertension)
> Back Pain (Which I always assumed was from my curved spine – scoliosis)
> I have a little bump on my shoulders, but unless you’re looking for it, you won’t see it.
> High levels of stress hormone.. and waiting on results for Cortisol.
> I recently have been struggling with depression
> Anxiety & Irritability are a constant.
> Acne
I am currently waiting on my urine results.. and I have no idea what to expect. I do not even know how long it will take to get results.
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.
Before Cushing’s [Photographer: Jeanne’s family]
In the kitchen [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
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