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.
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 Monday, November 17, 2008
I am currently in diagnosis – Finally got fed up and met with an endo. who is wonderful – she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do – go look up symptoms on line.
I have ALL of the sympoms for a Cushie – from the over emotional bit to the hump – Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.
I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don’t know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.
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.
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?
Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.
Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.
Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.
Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.
June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)
Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )
Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).
Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.
Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.
In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.
Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.
That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!
Born with congenital hypothyroid (which was undiagnosed until 45). My thyroid is the size of a lima bean!
Discovered that I was exposed in utero and as a toddler to sky-high amounts of dioxins — i.e., Agent Orange, along with what has now been diagnosed as Asperger Syndrome. Through college, I was very athletic, super-strong (stronger than many men and could squat-jump HUNDREDS of pounds) and was an expert skier. I also played co-ed soccer, despite respiratory wheezing. I just dealt with it.
I have had episodes of suspected Cushings for about 25 years.. It felt like immediate-onset mono. I would have tons of energy all of a sudden, turn into a cleaning monster and get loads done (for example, cleaning out and rearranging my large storage unit) only to crash a week later and barely to get out of bed — coupled with weight gain of 40lbs + each episode.
At the lapses between episodes, I could diet and force myself to exercise, lose weight… but each time it was worse. I would gain 40, lose 35 — so I started losing ground. When given prednisone for bronchitis several times, when pregnant, and when given prednisone for systemic poison ivy, the same symptoms came back… but with much higher severity.
At the same time, I had multiple surgeries for perineal abscess — which was lanced and turned into a rectal-vaginal abscess. This would never heal.. I had 10 fistula flap, pig plug, cauterizations — none of which healed. No one could figure out why I wouldn’t heal. They tested me for HIV, but that was negative — so they had no answers. I seemed almost allergic to myself.
My surgeon talked me into a “temporary” loop ileostomy, promising that with no food going through, the fistula would heal. No dice. The ileostomy broke down, herniated, developed gangrene, and I ended up losing my appendix, some upper and lower intestine, and my caecum (which absorbs bile back into the body), and has resulted in terrible malabsorption problems and chronic diarrhea. Because I wouldn’t heal, the ileostomy was made permanent (my worst nightmare). Five years later I found a doctor to reverse the ileostomy. However, he noticed non-cancerous lesions on my intestine. Biopsies revealed nothing remarkable. I tested negative for celiac, for Crohn’s… just “cranky bowel”. While the takedown/reconnection surgery went well, my surgery site (a straight line from sternum to pelvic bone) would not heal internally and I herniated in 8 places. A piece of mesh was placed to cover the entire site. At the same time my gall bladder was removed because it had reportedly atrophied.
Since that last surgery I have gained 60 pounds, in 30 pound increments. One was immediately after the surgery, the other was over Spring Break. I got a lot done, felt like superwoman…all the while eating LESS than usual and drinking lots more water, but gained 30 pounds in a week, without swollen ankles. I had developed stretch marks in my armpits.
Since this started, my body has changed shape, places it stores, my feet have gone up 3 sizes, and my skin has turned kind of orange. I look like I go to a cheap tanning salon. The small buffalo hump I had 10 years ago has turned into a full-blown travel pillow which goes around the base of my neck. It looks a bit like my head is coming out of a vagina.
Don’t know what else to say. I can tell you what endo’s NOT to go to… But I have yet to find one who even believes cyclic Cushings’ even exists. I am trying not to dwell on the underlying question: Am I going to die of this before I get some real help?
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.
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