I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.
I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.
I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.
In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.
I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery đ so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced đ
I was diagnosed with Cushingâs this week after about three years of testing. Â This is in addition to a diagnosis of Lipedema a little over a year ago. Â I had an MRI on my pituitary glands done Friday so I am awaiting the results. Â Praying they find the tumor so I donât have to do the sampling surgery he talked about.
Other than the high cortisol levels and extreme weight gain, I do not have any of the other symptoms of Cushingâs (high blood pressure, diabetes, facial hair, alcohol use). Â Actually, can someone explain what alcohol has to do with it?
Anyways, my endocrinologist asked me over and over if I drank alcohol.  I told him never, (I donât drink; I donât swear; I donât rat my hair⌠LOL) but found out that he sent my blood in to be tested for alcohol â like he didnât believe me (seems like on that issue and a few others).
However, I am just thankful for a diagnosis so that something can be done!
18 months ago I underwent an adrenalectomy (L) for a benign mass. My cortisol levels were slightly elevated, all tests suggested sub clinical cushings.
Before the surgery I felt great, no symptoms other than easy bruising, bleeding gums and mild hypertention. In fact, the reason I went to an endocrinologist was because I thought i had a hypothyroid issue and my fasting blood glucose was always around 110. The adrenal mass was an incidentaloma during a scan of my pancreas/abdomen.
During the surgery I suffered a positioning injury  to my shoulder, arm, and hand. Permanent nerve damage and horribly painful to this day. My initial post op replacement dose of cortisone was 10mg twice a day even though the surgeon and my endo were quite aware of my injuries. I felt like I was dying. Short of breath, chest pain, no sleep ever to this day.
Finally after 6 months a doctor at the hospital were I worked as an RN took over and directed me to pain management and ordered MRIs. Torn muscles, bursitis, tendonitis carpal tunnel and ulnar nerve entrapement etc….Since then i have had to change endos because mine has become rude and my appointments brief. I make 0.5 cortisol, nothing.
I am still on disability and will be terminated permenently in September. Every morning I lie there writhing in pain, short of breath, crying. I am so lethargic once I force myself up I bump into things. Some days I can’t get up at all. All pain management wants to do is inject steroids. I have had 3 nreve blocks and a spinal stimulator trial which did more harm than good. I KNOW I am in steroid withdrawl but what do I do now?
It’s been 18 months and I can’t find an endo who will pay any attention to me…………….I Â also believe I still have a thyroid problem. My levels are ‘borderline’ just like my cortisol was but the symptoms are all there and very obvious. Plus my cholesterol ,untreated, is 295. I don’t eat junk at all. never did.
My meds are Hyzaar, lipitor, neurontin, calcium, prozac,and 10mg of cortisone a day. I ditched the vitamin d3 because they only check my D-25 not 1-25 D and I am afraid of having dysregulated Vit D metabolisn which increases inflammation…..
Another Golden Oldie, Kirsty’s bio was last updated 08/18/2009.
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I donât really remember when it first started. It was probably about a year ago when I think about it.
I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an âold nanaâ who stayed home all the time and went to bed early. At the time, I didnât think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.
As the year progressed, I rapidly began to gain weight. Putting it down to âeating to many chocolate biscuitsâ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ârabbit foodâ.
The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldnât possibly think about doing anything else until I had cleaned every nook and cranny.
Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.
My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.
As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.
I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was âyour face looks very cushingoid.â Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasnât really too concerned as at this stage, I had no idea just how important cortisol really was.
The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushingâs syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was âcancerâ.
The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushingâs.
The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake â I could actually feel them moving around in my head.)
This test concluded that my Cushingâs was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was âwhere is the tumor?â I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.
Together they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.
After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.
The next week, another CT scan was required to see if the nodule had grown, it hadnât. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that Iâve faced.
Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.
The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).
After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldnât believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).
I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, Iâm told this could last up to year.
However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.
My Cushingâs disease is cured now, however I am now labeled as being a sufferer of Addisonâs disease (where there are no adrenals, or the adrenals donât work).
There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.
Michael B’s Story. Michael B was first diagnosed with Cushing’s in 1979 and had a bilateral adrenalectomy in 1980. In 1983 the symptoms reoccurred and he had a third adrenal removed in 1983. He then developed Nelson’s syndrome and had his pituitary (plus tumour) removed, followed by another pituitary surgery then 5 weeks of radiotherapy.
This Golden Oldie was last updated 06/07/2008
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I was diagnosed with Cushing’s in late 1979 and had a bilateral adrenalectomy in 1980. After the operation my weight reduced and my blood pressure stabilised to normal. In 1983 the symptoms re-occurred and I had a third adrenal removed in 1983 (this was found by the use of radioactive cholesterol isotope injection).
The anterior pituitary is the anterior, glandular lobe of the pituitary gland. (Photo credit: Wikipedia)
After this I felt good until 1987 when I developed Nelson’s syndrome and had my pituitary (plus tumour) removed. Again all went well until an MRI scan discovered that the tumour had returned.
In 1998 I had this removed followed by 5 weeks of radiotherapy in the hope of preventing a further growth of this tumour. To date and several MRI’s later it seems to be working.
In the early days my symptoms were all physical e.g. moon face, high blood pressure excess weight, abdominal striae, localised headache, I never suffered from depression.
I write to reassure people that it is possible to live a normal life after Cushing’s. Keep up the work on the website. I did not have the luxury of so much information. My information came from trawling through my local library for information for, like others, I got little information from my doctors.
Fabiana had transphenoidal surgery (pituitary) July 30th 2004. Â She had a recurrence after seven years of being Cushing’s free. Â A second pituitary surgery on 10/26/2011 was unsuccessful.
Another Golden Oldie, this bio was last updated 9/12/2015
Fabiana will be our guest in an interview on BlogTalk Radio Wednesday, October 21 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.
The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 88 other past interviews to listen to!
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Well it has taken me a year to write this bio…and just to give some hope to those of you just going thru this process…I have to say that after surgery I have not felt better! I am back to who i always knew I was….the depression and anxiety is gone and I am living life like a 24 year old should!
I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno…who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry.
My mom wasnt hearing that and demanded a script for an endo. I went….he did blood work…and metioned cushings. But nothing came back definitive…so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work.
As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist….but i knew there was no reason for my depression. Two of them told me “i had very good insight” and that I didnt need them. I started getting more anxiety..especially about going out socially.
High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out…i exercised everyday..hard….i joined weight watchers…i stuck with it. I was at 103 lbs….that crept up to 110…that crept up to 117…each time my weight goal would be “ohh if i could just get back to 108..112…115” with each weight gain my original weight goal would get higher and higher.
Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends…why was i depressed? I was becoming emotionally draining to the people closest to me…I would go home a lot on the weekends…i was diagnosed with PMDS….like severe PMS..and was given an antidepresant…i hated it it made me feel like a zombie…i stopped taking it and just made it apoint to work on fighting the depression….and the weight gain.
When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms…and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me…i went to my PCP with this and she said it was possible and that i should to talk to my gyno….I am 4’8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just “itailan” ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily…and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries…..NOTHING.(i kept thinking i was going crazy and that it was all in my head)….she also decided to do some blood work…and as i was walking out the door she said..”you know what..i am going to give you this 24hr urine test too. Just so that we cover everything”. I just kept thinking please let something come back ….please dont let this be all my fault…please dont let this be all in my head…..please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x’s the normal.
I went to an endo…by the time i got to the endocronoligist i was up to 130…i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time…in my room…and was becoming more and more of a recluse…i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings…that was it! I went to the endo and told him..i think it is cushings….he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI’s….my adrenals my pituitary my lungs….he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes….it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it…..finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits….i could not make it thru a whole day)
In April i had to change to office work…i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating…my boss was very willing to work with me and willing to hold my job for me.
July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later….i am down to 108 lbs, i have so much energy…no depression….and i dont mind looking at myself in the mirror…i am enjoying my friends and my boyfriend…(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!!
It was a crappy time…(as i am sure you all can atest to) but i learned a lot…..most importantly i was bombarded by good wishes and prayers….friends requested masses for me…a nun in brazil prayed for me…people who i never thought i touched their lives…took the time to wish me well…send an email..or call….I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey.
This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months…i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak…needless to say i love my PCP and my endo ..and that i changed gyno’s…
I just want to let anyone out there going thru this disease to know..you are not alone….and to take each day is stride…when you need help ask for it….and that this road can lead to a happy ending. God Bless!
ps- it is ok to feel bad about what you are going thru…it is a tough thing to endure…and when the docotors tell you there is noting wrong…..follow your gut…and you keep searching for the doctor that will listen… If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me…fapadula@hotmail.com…i will help you out the best i can!
Update November 6, 2011
Well- here is an update, after seven years of being Cushings free it has returned.
With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole “roundness” of my body, buffalo hump. I decided I was going to work out hard, eat right, and see – I didnt just want to jump to any conclusions. I stuck to it- and nothing…..my hair started thinning again and the acne was coming back and then the missed periods…..so I went to my PCP- told them i needed the 24hr urine and wouldnt you know…..427 cortisol level (on that 0-50 scale)……here we go again.
So back to endo- now at Penn Pituitary Center…..it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling…..but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA…….after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011.
It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication……BLURG……Sooooo on to the next step…..after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful.
I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey.
Many Blessings!
Fabiana
Update September 12, 2015
So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven’t felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of….my “new normal”.
My husband and I decided to try for a second child…my pituitary was damaged from the second surgery and we needed fertility…after 8 months of fertility I got pregnant and we had our second son January of 2015.
In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures.
So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options.
Again Cushing’s is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids….I am now on my 18th year of fighting this disease. I never imagined it would get to this point.
But here we all are making the best of each day, fighting each day and trying to keep things as “normal” as possible. Blessings to all of you fighting this disease…my new go to saying is” ‘effing Cushing’s”! For you newbies…Fight, Advocate for yourselves, and find a doc who doesn’t dismiss you and hang on to them for dear life.
A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.
Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.
Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.
In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.
Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.
Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.
“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”
When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.
Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.
“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”
In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.
After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.
She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.
Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.
“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.
“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”
Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.
After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.
After she came off her medication, Hannah said she knew she was better and became determined to lose weight.
She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.
“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.
“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”
Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.
Hannah said: “I am super proud of myself, I am always worried that the weight will come back.
“I feel so much happier. When I look back at myself, I just can’t believe I was that size.
“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”
After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!
During her too-short life, she provided help and support to other Cushies.
Hi y’all! I will try to make this short, but there is a lot to say.
I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.
At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.
Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.
Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?
Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.
At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.
At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.
Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.
At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.
Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.
So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.
By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?
Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.
I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.
In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.
But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)
Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).
Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.
When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.
Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.
Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”
Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?
I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.
I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.
So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.
And, I’ll keep you posted.
Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.
Be well, my new friends,
Kate
p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.
Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008.
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Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a psychologist who said I was “sane” and diagnosed me with depression related to organic disease.. but what? the fatigue increased – looked like a walking zombie and could barely make it through the day. I worked in a very high powered job. Started experiencing rapid heartbeat – and landed up twice in the ER. Before going to the cardiologist I had a chest xray and saw a shadow on my lung. As an ex-smoker I was concerned and ordered a CT with contrast. I am an RN with a background in Oncology. to cut a long story short, landed up at the oncologist who agreed with me regarding the need for a biopsy. I had to fire my GP who told me to wait another 6 months and do a repeat. I diagnosed myself with a carcinoid tumor, had the upper part of my right lung removed.
I kept on complaining of increased symptoms – moon face, fatigue, headaches, joint pain etc. Got diagnosed with sleep apnea. My oncologist pooh poohed everything but further staining of my lung tumor indicated that it was secreting ACTH – Cushings!
Had a brain MRI – my sella is totally empty and I have a 7mm tumor – not sure what even after 3 MRI’s. Had a full endocrine workup – the endocrinologist siad everything was fine! HA! Turned out I have Hashimoto’s with thyroid cancer – just had that removed. My thyroid was so swollen including the lymph nodes which made me suspicious for metastases- that they could not visulize the Recurrent Nerve – so now I have permanent vocal cord damage and cannot work.
Before this I decided to go to see Dr Friedman. What a blessing. I have adrenal insufficiency, he thinks intermittent Cushings from another carcinoid tumor, who knows where and extreme growth hormone deficiency. I need to have the pituitary tumor removed but am awaiting recovery after my thyroid operation.
I feel terrible – cannot really function, cry all the time, have severe headaches, joint aches, nausea etc. I hope and pray that the pituitary operation will fix up my problems.
Hello everyone. My name is Joe. I’m a 23, soon to be 24 year old male who is (hopefully) in remission from ACTH-dependent Cushing’s disease and two transsphenoidal surgeries.
I’d like to say my journey all started back in November of last year. Though, the past year has been a stressful, anxiety filled year for me with a roller coaster of it’s own. I was working full-time as a web designer at a web firm down the block from me for a little over a year, but was just getting so sick of the grind. I was also dating a younger girl for about 2 years up at this point, who had just left for college last August. Thinking that I was finally going to have a little more time to myself to make and save money and just freedom in general, I was proven very wrong. As soon as she left, the separation anxiety hit me like a TON OF BRICKS. I could hardly sleep, go to work, or even function. I knew the first thing I needed to do was free myself of the miserable grind of work and get back to freelance work. I told my job I was leaving and actually had an opportunity to do some other work with my uncle across the country decorating malls for the upcoming holidays as soon as my two weeks approached. It was a nice break and a good way for me to get away and experience some new things, like my girlfriend was doing. When my girlfriend first went away, I started taking Valerian Root to help me sleep and have been taking St. John’s Wart for about a year and a half to keep the anxiety as it’s lowest. I decided that when I get home from this trip, now that I’ll have a MUCH more free life, that I’d like to cut out all these vitamins that I’ve been taking for years to help with my skin, health and anxiety. Like Fish Oil, Vitamin A, E, C, Multivitamins, Probiotics, etc. I wanted to come home and have an awesome natural routine of exercising, working, and juicing. It sounded perfect. Make money, get fit, stay healthy and feel good. As the end of the trip approached, I was pretty much finished with all the vitamins. We traveled for about a month and a half and was home just in time for Thanksgiving. My girlfriend was home then as well, so it was good to see each other again finally. We were in touch as much as we could be when we were both away and decided to keep things going.
Here’s where things started to change. One of the FIRST things my mom said to me when I got home was “Wow, your face looks puffy and swollen.” I actually agreed and said it’s probably this stuff that I decided to stop taking called “hyaluronic acid”. It’s supposed to make your skin more supple and moisturize from the inside out. I figured that’s why my face was looking that way. I JUST started using it too. As the weeks went on, I noticed that there was a prominent redness in my cheeks as well. My cheeks were usually red like this, and I always thought I had Rosacea, but noticed that they were now red the whole day long, and I could almost see where the redness kind of cuts off. I didn’t pay much attention to these signs, but still was a little concerned.
As the holiday’s approached, I didn’t really get a chance to start working out or running or anything that I planned to do now that I was working home. I was gaining a little bit of weight in my face and my tummy, but just blamed it on being lazy. My girlfriend noticed and would tell me that I’m getting chubby and looking different. It was getting pretty annoying at this point hearing everyone saying that I’m puffy and chubby looking. I then started to work out a little and was running as much as I could outside, even though the winter was approaching and it was getting harder and harder to run. I really wasn’t seeing much progress and even started to diet pretty hard with veggies. The crazy part is that I’ve ALWAYS been such a thing HEALTHY person. Always juicing veggies, always drinking water, always taking vitamins, very athletic, etc. It was crazy that I couldn’t get rid of this belly weight or get my face to slim back down.
This is when the weirdest thing happened…The stretch marks. I began to freak out. I saw these ugly purple lines on my inner thighs and was really confused. I thought…”How can someone my size get marks like this…am I exercising too much?” This was around February, and my girlfriend came home on another break and I remember one morning her mother made a comment and said “Wow, your face is so puffy and red, maybe you’re allergic to something, you look so different” This is when I finally decided that I needed to see a doctor. I decided to see an allergist to figure out why my face is so red and bloated looking. We did all kinds of allergy tests just to find out that I’m allergic to most environmental allergens. In between visits, I was doing my research. I started to Google things like “stretch marks inner thighs” and eventually came across the word “Cortisol”. Then Googling Cortisol, I eventually came across “Cushings”. I started to read the symptoms and began to notice that the majority of them were exactly what I had. The “moon face”, the “striae”, the “central obesity”. Then I realized how bad my sleep was over the passed few months. I thought it was just me being anxious about work, because I would wake up VERY early in the morning and wouldn’t be able to fall back asleep, so I would just get up and make breakfast and hop on the computer. Then I remembered the headaches I’ve been getting, or how tired during the afternoon I’d be. I was starting to make sense.
So one of the visits with allergist, I figured I’d mention the research I was doing. I asked the doctor if he was familiar with the disease. He said he definitely is. I showed him how different I looked a few months ago, and showed him my stretch marks. He was pretty shocked to see, but said it could just be from just eating bad and not exercising enough. I asked him if he could get me a blood test to check my Cortisol anyway. He said absolutely and sent me to a lab a few blocks away. I was very much expecting to see high cortisol levels. Like a fool, I went right after my appt with him, so the blood was taken around 12PM. I didn’t realize then that cortisol should be drawn around 8AM, but anyway…
The next time I came in to see him, he gave me the results. He said “You wanted to know if your Cortisol was low, right?” I said “No, I wanted to know if it is high.” He said “Oh…well, yes, they are a bit high.” He did mention that the RX said for me to have them taken in the morning and was kind of mad that the nurse didn’t notice that and say to come back in the morning. He said they could be high because of the time of the day and maybe the stress because of what I thought was going on. I knew now that I had to take these results to an endo.
This is when I started to mention things to my parents. They knew I was seeing the allergist and I have already talked to them about the cortisol and cushings, but I didn’t really get in depth. Once I had this blood taken, I knew I had to let them know what I think is really going on. I explained that the disease is caused by a tumor in the brain, or in your adrenal glands and they thought I was talking crazy. I was looking for local endos and found one not too far from me. When me and my mother first met with him, I knew instantly I wasn’t going to like him. It seemed I had to introduce myself before he even said anything. When I explained what I thought was going on, having Cushing’s and all, he said “You don’t look suspicious of Cushings at all.” He mentioned that the disease is VERY rare and that he has only diagnosed it about two times in his career. He looked my stomach, the back of my neck and said that when people have moon face, you usually see fatty deposits by the side of their eyes. As much as I didn’t want to hear I have Cushings, I wanted a solid answer to what is going on. He didn’t even ask to see the stretch marks when I mentioned them. He said, “Yes your cortisol is high, so we will do further testing.” I took home the urine test and also had a few blood tests done. Very anxious at this point, a few days passed and we came to see him again. Just as I thought, very high cortisol levels. He seemed very shocked and pretty much stated that Yes, I do have Cushings. He then wrote up multiple RXs for me to have done. An MRI, a CT scan, a chest scan. I was beginning to get pretty nervous. He explained how the disease is very complicated to diagnose and to find where the excess cortisol is coming from exactly. I was becoming very knowledgeable at this point and knew it wasn’t going to be an easy process.
Things started to get a little ‘different’ around the house and with my relationships. I’m actually a triplet and 1 of 3 children. My brother and I are very close, but not so much with my sister. My brother knew what was going on, but didn’t really know much about the disease. I would tell him and explain to him, but not really sure if he was even listening much. My dad was starting to get involved with things and becoming supportive of the changes. I was getting depressed with how I look and felt, and thankful my girlfriend was still away, even though I could’ve used her support…I just didn’t want her to see me like this. Things started to become pretty stale with her and my health was becoming more of a priority. I told her what was going on, but she hardly understood. So I started with the CT scan.
The doctor suspected the tumor to be found my in adrenal glands. Unfortunately, there was nothing to be found. The doctor then took some more blood work and realized that we should be looking in the pitutary. I then had an MRI done. At this time I receiving help from the whole family. My aunts and uncles were doing some research too, looking for better doctors. We live on Long Island, New York…so Manhattan is just a small trip away. It’s said that the best doctors around here are located in NYC. My mom found an endo by the name of Eliza Geer at Mount Sinai Hospital in Manhattan. We were lucky enough to get a appt rather quickly. We were still waiting on the results of the MRI at this point and recieved them the day of the appointment.
We took them to Dr. Geer. Now this Dr. is no ordinary endo. She actually is VERY familiar with the disease and runs a research study on Cushing’s on “Body Composition and Metabolism” in Cushings patients. Immediately, we knew were at the right place. She took a look at all the blood work and could most definitely tell that what is going on is definitely Cushings. She was very impressed with me that I was able to basically diagnose myself, and asked me if I was studying in the medical field, hah. She knew that there was no need for more testing, but now just to figure out the source. We gave her the CD with the MRI results but she had trouble getting the images to show up on her computer. She asked that if we could wait a bit longer, that we could meet the neurosurgeon that she works with, Dr. Kalmon Post, and we would look at the imaging together in his office. Feeling pretty good about the new doctor, we waited a bit in the lobby until they could both see me again. During the wait, I dozed off, but woke up to my mother and aunt talking to a lady in the lobby. She was with her son. After some conversation with her, they found out that he also had Cushings, and has been going through it for several years. He is 20, so a few years younger than me. My aunt asked if it was okay to exchange emails, so me and him have actually been in touch since our surgeries.
Anyway, it was finally time to meet both doctors. Feeling very nervous and anxious, we sat with them and he explained a little more about the disease, and the complications of the surgery, etc. He made a joke about my rosy cheeks and it actually made me feel a bit comfortable with him. He also said how the reversal of the symptoms almost seem magical. I was beginning to feel really good about him as well. He said that he does pituitary surgeries multiple times a week. He then opened the CD and we all looked at the images together. He explained that when there is a distinct tumor found, you will see it quite easily and explained how it would make the gland look in the scan. Unfortunately…we couldn’t find anything. He explained that at this point it could so small that it may never show up on the scan, so he never wants to go into the gland and begin any sort of surgery without being 100% positive that this is the source of the problem. He then explained that there is procedure that completely confirms where the source is…”Inferior petrosal sinus sampling” It sounded pretty strange to me, but I knew it had to be done. As soon as we left his office, we made an appt with Dr. Patel to have the IPSS done ASAP.
A week later we were back for the procedure. What a strange procedure…but all went well. The results came back telling Dr. Post that it’s time for surgery. I think it was another week or so later that we made the appt for my first surgery on May 6th 2013. Both anxious and excited, I was more that ready to get this done and over with. My surgery was late in the day, so I wasn’t in recovery until I think about 6pm and then in my hospital bed until about 8pm. I remember my endo coming to see how I was feeling, as well as my surgeon. Knowing that I was supposed to be feeling flu-like symptoms, I was honest and said that I felt okay. My parents spent the next few hours with me until they had to leave. Unfortunatly, I was not feeling any sort of crash, but just very uncomfortable from the darn nasal-tampon in my nose. The next day the blood results came back from after the surgery and my cortisol levels were still very high. Disappointing news, but pretty much expected. I think they were 77. Though, the doctors mentioned that a second surgery is common and that the levels may be high because of the time of the day. We still kept our fingers crossed that they would still be dropping over the next day. They did come down ALOT the next day, but not in a normal range. I was sent home on the Hydrocortisone, incase that they would continue to drop, though I wasn’t very optimistic at this point. The pathology report did come back that whatever he did remove was all tumor, so that was good to hear.
Still feeling the Cushing-like symptoms over the next few days, I took my week later blood work again just to find out that the cortisol levels went back up. My endo said that I am going to need another surgery. I remember my surgeon explaining how he wants to be as gentle as possible when messing around with my pituitary, to make sure no damage is done to it. So I understood that maybe there is some tumor cells left behind and this time he will get the job done. We were lucky enough to schedule the second surgery only about a week or so later, with a very early appointment (May 20th).
Right before the surgery, the surgeon came to me and my mother and mentioned “Hyperplasia”. He said it’s very rare, but there is a chance that my gland is what’s producing the excess ACTH and not a tumor. He said is going to try his best to determine that and continue to remove any abnormalities he see, as aggressively as he thinks he needs to be. A few hours later, waking up in recovery I felt crazy anxious. I couldn’t stand the oxygen mask so I removed that after a few minutes. I could not wait to be in my bed. Unfortunately, again, I was not feeling the crash. Disappointed again, we were giving it time and hoping again that there were just a delay in the levels dropping. The next two days passed, and my levels were still a bit high. I saw both my surgeon and endo before leaving the hospital, and we spoke about other treatments at this point, but obviously we were going to wait on the near future cortisol results before moving forward with anything else. Me and my family were pretty devastated at this point, but my parents were still being optimistic. Not able to understand how this “amazing” doctor was having a hard time curing me and why it has to be so complicated for me was beyond everyone at this point. Sent home with HC again, everyone was praying for a drop in the cortisol levels. My doctor had me get my blood taken that following Friday with STAT on it. I spent most of that day with anxiety attacks and tears, over the fact that I just didn’t know if I was cured or not. I was feeling pretty dizzy and sick to stomach…but didn’t really noticed that UNTIL…
I received a call later that day from my endo. She first asked me how I was feeling. I told her very anxious and pretty dizzy. She responded with “Good! Because your results came back and your cortisol is at 12.” My parents both jumped up (I was laying in their bed between them…yes, I felt that awful about everything going on) in shock and awe. I was shocked to hear good news for once. She said to continue the HC and that we will be doing follow up bloodwork in about a week. The next blood test approached, with prayers that it would be even lower or at least hopefully in a normal range. This time the levels were a LITTLE raised, to 18…so my doctor felt that at this time we can begin to taper the medication since my levels are indeed high, yet still in a normal range. At this point, we believed that I am in remission and on my way to recovery.
A week later, we went for the two week follow up with both the surgeon and endo. We were able to meet with both of them at the same time. Both doctors said that I am starting to look less cushing-oid, which was relieving to hear. My endo explained that because of the surgery, my Thyroid and Testosterone levels are also a bit low, and that I’d have to go on replacement until both levels are normalized. I figured that this follow up would only be to talk and go over a few things, with not any real results or new good news, but I was okay with that. Though, we did have an interesting conversation with the surgeon.
Dr. Post, the surgeon wanted to explain what was going on with this pathology report. He is known to be one of the top neurosurgeons in the country and has done thousands of pituitary surgeries. He said that I seem to be a very perplexed case of Cushings. From what he can see when he performed the surgery is that the abnormalities do NOT look like tumor cells, but that the pathologist insists that what they look like to them ARE tumor cells. Because of the confusion, he is having my pathology report results sent out to other surgeons and pathologist for further questioning. At this point, he feels that the abnormalities that he removed are indeed abnormal pituitary cells, or Hyperplasia, like he explained to me and my mother before performing the second surgery. From how it sounded to me and my parents, that treatment for Hyperplasia is pretty much the same and that if all of the abnormalities have been removed, then I should be cured. He did also say that during the second surgery, he removed a lot more abnormal cells than he did the first time. Knowing that I perplexed one of the best surgeons in the country, we all felt a bit confused and a little down about things. We spent the rest of the day in Manhattan and headed home trying to keep our chins up.
Well, today I think has been about 2 weeks from the follow up, and almost a month from surgery. I’d like to say that I am seeing changes with my face, but it’s really hard to tell, though everyone around me is saying that I look fantastic. I can’t seem to get rid of the awful bloat belly, though. I have been going to the gym with my cousin for a week or so now, since my body has been feeling ALOT Bbtter than it has the passed couple months.
Last week my endo was away for the week, and being that I have been feeling better, she decided to give me the week off from blood work, which was relieving. I finally received my Thyroid RX yesterday and began it today and will be getting the Testosterone tomorrow. I got a call from my endo today and she is having me get blood work for my cortisol this Thursday. I am praying everything is normal and that I can continue to ween off the HC even more. I’d also like to mention that I going to see a laser dermatologist tomorrow for a consultation to see what can be done about the hideous stretch marks that my legs are covered in.
So it seems at this point I still am not 100% positive that I am in remission and this Thursday’s results should give us a pretty definite idea. I think this just about covers everything you guys need to know about me and my journey and battle with Cushings. I’m sure there’s so much I left out, though I am sorry it’s such a long introduction. I do feel my story is quite unique, being that I basically diagnosed myself and caught the symptoms so quickly. Please, if anyone has any questions or anything they’d like to discuss, PLEASE feel free to post back. It looks me DAYS to finish this and about 6 drafts that I started over a month ago when I was going to introduce myself to you guys before my surgeries…just was never able to bring myself to finish.
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