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Robin, Adrenal Bio

November 27, 2025

MaryO Adrenal, Adrenal Surgery, Cancer, Golden Oldies, Other Diagnosis, Thyroid, Treatments , , , , , , , Leave a comment

golden-oldie

Hello my name is Robin  new to this site.

Had surgery for cushing disease for adrenal tumor 10 years ago. Lost the right kidney due to a blood clot 6 months after my surgery.  Was doing really well then 5 years later got Thyriod cancer so they removed my thyroid.

i am doing really well but i have alot of days where i have real bad muscle weakness,tiredness and just drain alot of times.At these times the doctor has checked my blood work and says everything is normal.but i think not.

Have considered maybe taking some kind of herbs for the adrenal gland.but a little scared to try that . But i am interested in finding out.

Thank you

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Melissa, Pituitary Bio

October 22, 2025

MaryO Golden Oldies, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , Leave a comment

golden-oldie

 

From August 12, 2007

I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.

I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.

I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.

My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.

Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.

Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.

I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.

 

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Voices From the Past: Lee (lee1958), Undiagnosed bio

August 17, 2025

MaryO Undiagnosed , , , , , , , , , , , , , , 2 Comments

Hello.  I just joined so hopefully I will learn more about Cushing’s and find support and encouragement.  I’m not sure if I have Cushing’s yet.

I’ve suffered for years with gaining weight and in the past few years, it seems that no matter what I did, the weight was glued on.  And, it got more difficult to stay active.  Even walking like I used to enjoy has become very hard.  This past year, I gained a lot of weight in a short amount of time.  I’ve been considering weight loss surgery, in fact.

My other symptoms:  high blood pressure, high cholesterol, fatigue, muscle weakness, joint stiffness, my bones hurt, sleep apnea, edema that started in my feet and ankles, but seems to be throughout my body now…and yes, my face has changed drastically.

I don’t go out like I used to.  I work, come home, go to bed.  When invited out, I make excuses so I don’t have to go out.  Recently, I had a doctor visit with my cardiologist and he said he thought I might have Cushings.  He referred me to an endocrinologist who I have not seen yet.  My appointment is in 2 weeks.

In the meantime, he ordered some bloodwork and a 24 hour urine.  So far all the bloodwork is normal.  Even the ACTH was normal.  I have to do my 24 hour urine tomorrow and also the AM/PM Cortisol.  Part of me is dreading the results, and part of me wants to know why I can’t lose weight.

Everyone makes you feel like it’s all your fault.  I can’t even get my Gastric Bypass unless I lose 30 pounds first and I have tried and failed. I don’t even know if I can have the surgery if I find out that I have Cushings.

Can you have Cushings with a normal ACTH?  I’m so confused.  Any help would be appreciated.

~~~~~~~

She also submitted a second version:

First, I thought I posted, but maybe it didn’t go through.  Starting again. I’m 55,

I haven’t been diagnosed yet, but I was at my Cardiologist’s last week and he seemed perplexed with all my undiagnosed symptoms.  I have a plethora of problems beginning with weight.

I’ve been battling my weight for the past 10 years, but about 4 years ago it seems that no matter how active I was, I wouldn’t lose, in fact, I gained.  It didn’t seem reasonable to be working out, eating right and still gaining.  This past year alone, I gained 45 pounds in a few short months.  It’s made me feel so sick!

I’ve been forging ahead to have weight loss surgery, but they want me to try to lose about 30 pounds first and I just can’t.  It’s a losing battle.  And I don’t even know IF I can have the gastric bypass if I am diagnosed with Cushings.

Other symptoms:  High BP, extreme fatigue, muscle weakness, joint pain, my bones hurt, even lifting a coffee mug feels like my wrist is giong to break!  I have edema that started in my feet/ankles but my whole body feels waterlogged.  My liver is enlarged and throwing off high AST/ASL results.  I have sleep apnea and it was untreated for a few years, so I developed Pulmonary Hypertension.

My face has changed this past year, I don’t even recognize myself.  So, my Cardiologist says he thinks I may have Cushing’s.  He has set up a referrel to an endocrinologist, which is in 2 weeks.  But, he did order a slew of tests.

So far, everything is normal…including my ACTH.  Tomorrow, I am doing my 24 hour urine and my AM/PM Cortisol.  Can you have a normal ACTH and still have Cushing’s? I’m anxious to find out but almost hoping that I have Cushing’s, as it will be an answer to what is happening to me.

Anyway, glad to have found this support group!

Thank you in advance for any support/encouragement.

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Voices from the Past: Louise (Louise), Iatrogenic Cushing’s disease Bio

July 13, 2025

MaryO Steroid-Induced, Update , , , , , , , , , , , 4 Comments

steroids

 

I am a 52 year old wife and mom of 4 who has had strange symptoms which will be a year this coming August.

My first symptom that I noticed as something strange was brusing beneath the skin on my left arm and then noticing that the skin easily tore. My doctor ran some bloodwork but still couldn’t figure anything out.

Later my best friend researched my symptoms and suggested I ask my doctor, which I did at my next appointment. Oddly at that next appointment the nurse checked my vitals and everything seemed ok. When the doctor came in I was leaning on my husband’s arm and my systolic # was 92.

From there he referred me to an endocrinologist. We discovered, after many blood test, that my issues were caused due to ACTH issue with my adrenal glands and that was caused due to taking varying amounts (usually 9 mg) of Entocort for around 12 years.

Now that I have been researching some of the symptoms I realize I have had them for at least a year. I have weaned down to 3 mg and want to get off of the Entocort but the doctor says that I will die if I just stop the medicine. I am due to have bloodwork July 13, 2015 and meet the doctor to discuss the results on July 23, 2015.

My FEET are killing me! I have felt SO alone and I am very thankful to find this support group….now I just need to learn how to use the message boards, so please pardon me if I flub.

Any help and advice is appreciated! Can this go away? I am PRAYING that it does!

Thank you in advance! Louise

~~~

update

Updated based on Louise’s comment.

My name is Louise. I am NOT a technogical person and cant seem to figure out how to get the most out of this forum, and I KNOW it is a good one. I desperately need contact with others who understand because they are going through this. Someone please tell me how? I just need some help. My bio says that I am “undiagnosed” but that is not longer true. The end of June I was officially diagnosed with “Iatrogenic Cushing’s disease”. I felt badly for 3 days, one of which was Father’s day and I was NOT going to the ER on that day. The second day I packed up a necessary bag, but still did not go to the ER. The third day I’d had all I could take and asked my husband to take me to the hospital. My stomach and my head hurt and had been hurting. The ER doc told me that my potassium and my sodium levels had bottomed out and that it could cause neurological damage and / or seizures. Scared me. I was admitted to the hospital for 4 days.

My Cushing’s was caused by long-term use of Entocort, or budesonide. No one could make sense of my “crazy bloodwork” because my cortisone level was “non descernable”, yet how was I alive? The second visit with my endocrinologist, just as she walked out the door, it hit me and I asked her if it could be the budesonide. She immediately recognized what was causing my Cushings. No one had picked up on the medicine because it was listed under the generic name and did not have a “cort” in the word of the generic. I have weaned completely off of the Entocort and it was not easy but I was determined. I have been on a maintenance dose of Cortisol beginning at 20 mg per day and I am not down to 15 a day. I want to go to a lower dose but need surgery on my thumb and so I know I will have to go back up to 50 mg for a while as I deal with the surgery. It will be the second surgery on my thumb, a surgery to correct the first surgery. Long story on the thumb, which I will skip….however, I originally messed up by thumb because I could not sleep. I asked my dr about Ambien and he said that would be good. I wanted to be sure it would not cause crazy behavior in any way, but once I took it, within 5 minutes (because I knew after taking the medicine I had to go immediately to bed within 10 minutes. I had a HORRIBLE fall and remember none of it. Once diagnosed with Cushings I realized that not sleeping, like for a day and a half being wide awake, was a result of Cushings.

My GI dr who prescribed the Entocort was kind and professional, truly caring but he didn’t ask me about ANY side effects, saying this drug was “the best” and that it really never had any side effects. I went in with skin on my arms so thin, brusied and bleeding, but he was only interested in the GI issues, even after I TOLD him I had Cushings. I finally had to tell him flat out that the Entocort he prescribed for me beginning 09/26/07 was what CAUSED my Cushings.

I ACHE, my lower back and feet, often my hands. It is hard to feel like an attractive woman when I am shaped like an apple with a moon-shaped face, but I decided I’ll just say heck with that…..there are other worse parts I am dealing with, yet, not being vain, that still matters to me self-esteem wise.

As I weaned from the Entocort my blood pressure went crazy up and down, but mainly high, which was some to begin with. Now it drops down and I feel like a wet rag. I am sleeping a LOT and when I get up during the night or in the morning I feel like I walk like Herman Munster. It is getting to me because it is hard to do things with my kids because I don’t have the energy or the ability to do things with them (the youngest 2 are 17 and 15 and they live at home. We also have a 22 year old and an almost 20 year old who are living on their own working, or on their own in college. I miss some things because I just “fall out, or hit falldown as I call it”. Maybe someone here can understand what I mean when I say I “hit falldown”. Others don’t understand. I have not told people in my community about my condition due to a former friend who is just plain nosey and called other friends to find out why I was in the hospital. I am not ashamed of the Cushing’s, but I don’t want to be gossip fodder either.

I did break down and asked my dr for a handicapped tag so that I don’t have to walk so far. I still have swelling in my legs, but hopefully that is better, but the pain is not. My balance is off and I have to steady myself when I stand up.

My cortizol levels have gone from “non descernable” to 2.4 to 4.3, so at least I am heading in the right direction. It is baby steps but I am thankful that it is going in the right direction, however slowly.

I would appreciate anyone getting in touch with me and have checked the “notify me of new comments via email box”. It is hard because people don’t understand and those I DO tell in confidence, I have a hard time describing it.

I don’t know that I used this forum correctly, but I am trying. Does anyone else have those “fall down” got to lie down NOW, moments where you lie down for hours? Somedays I feel like I get nothing done.

Thankful to have a place to voice my feelings. God bless each one of you. Louise.

 

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Voices from the Past: Patty L (Answer hungry), Undiagnosed Bio

July 10, 2025

MaryO Hypothyroidism, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Linda (Linda569), Steroid-Induced Bio

May 2, 2025

MaryO Steroid-Induced, Thyroid , , , , , , , , , , , , , , , , Leave a comment

I am 61 and have been taking prednisone for over 3 years without a successful taper. My journey begans with a cardiac ablation for PVC’s , that ended with my heart being punctured during the precedure. I came home after 2 days in the hospital without a problem. On the 3 day, pain in my chest was unbearable. I thought it was a heart attach. Called the Dr., he prescribed a prednisone pack, like you take for poison ivy. A week  so later, I was in the ER with the same pain. More prednisone, higher dose. ER visits have been to many to count by now. Many chest exrays, ultra sounds, echos, with no sign of fluid around the pericardium.

Last ER visit, June 2012, this time it was pleruisy. Seems this inflamation just move around in my upper body. So higher doses of prednisone and send home to taper again. Today I had a bad day, as I have been trying to taper and the pain comes back, this time in my shoulder and right chest. I took 25 mg. today and am pain free now.

My problem other than addiction to prednisone is that no Dr. will treat me. My cardi says its not his problem, even my primary will not treat me. Says she will not prescribe prednisone. An endo. Dr. at John Hopkins prescribed me 1 mg. tablets last year with refil, however, I am down to my last bottle and using fast.. The endo was my thyroid Dr., had the thryoid removed last Aug., anyway, I would like to know if anyone out there knows a Dr. in the D.C/ Baltimore Metro area that they have used that treats prednisone addiction? I am lost to fix this., with no help so far, unless I end up in the ER, then that is only a temp. fix.

I went to my regular Dr. last week, as follow up to ER and she said, ”It sucks to be addicted to prednisone doesn’t it. ”  Told me she couldn’t find anything wrong with me and was ready to leave, Iask if she could at least do blood work, make sure all was o.k., since I was on this drug. She signed the lab slip.I still have it, don’t even want to do that.. just depressed about the entire ordeal at this point.

Thanks for listening.

Lisa (Lisa), Pituitary Bio

April 29, 2025

MaryO Pituitary, Pituitary Surgery, Prolactinoma, Treatments , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

I was diagnosed with Cushings in Feb 2011 at the age of 30, after 6 months of inconclusive testing to find out what was going on with me.  Bone marrow biopsy, CT scans, MRI’s, urinalysis, bloodwork, you name it, it was done.  The first symptom I noticed was my left foot swelling (edema) after a workout injury.  The swelling remained long after it should have, and I thought I damaged my lymphatic system.  A trip to the endocrinologist and a CT scan proved that untrue, but he did notice I had an enlarged spleen and a high red blood cell count.  He didn’t seem to think that was a concern, but around that time I also began to experience a constant pain in my right flank.  So I went to a gastroentrologist.  Then a hemotologist, then a cardiologist, etc.  My final diagnosis came after my hemotologist ran a urine sample and noticed a highish level of cortisol.  She sent me back to my endocrinologist.  Before I went, I started a heavy Google search for what high levels of cortisol could mean, and came across Cushing’s.  I knew that was what I had.  I had been diagnosed with a prolactinoma 4 years prior (which I had told every doctor I had seen) and no one made the connection.  I demanded my endo test me.  He didn’t want to, telling me that I hadn’t gained weight and that people who had Cushing’s were really sick.  I demanded, and he gave me a supression pill to take the night before I came in for bloodwork.  He called me with the results a couple of days later, accusing me of not taking the pill.  Of course I took the pill, I said.  He said that the pill hadn’t suppressed my levels as it should have, but he didn’t believe it, and wanted me to then do a 24hr cortisol urinalysis.  I agreed, but also scheduled an appt with a neurosurgeon.  The neurosurgeon had the same hesistation, but also did the 24hr test.  A week later, the tests came back in.  My cortisol levels were 8 times what they should have been.  I definitely had Cushing’s.

I had transsphenoidal surgery a month and a half later.  I spent a week in the hospital that can only be described as hell.  My body crashed hard and every part of me ached.  The next four months proved equally as challenging, my energy being non-existent and my replacement dosage being difficult to keep correct.  But a year and four months later I’m very close to being off the replacement dosage, and feeling back to normal.  Thank goodness for Cedars Sinai pituitary center for their attentiveness and care.

The biggest lesson I learned was to trust yourself.  I did not gain weight when I was sick.  I did begin to develop a moon face and a small tummy, but my weight remained constant.  I was waking up at 3 in the morning every day, my blood pressure spiked, my muscles weakened, I bruised easily, I lost hair on my head, my skin became mottled and thin.  I don’t know if the weight gain would have happened eventually or not, but I truly believe I wouldn’t have stayed alive long enough for that to happen… the change from healthy to sick happened so rapidly in my case that if it kept up I doubt I would have lived much longer that a year or so.  I worry about recurrence every day, and have had numerous visits to the ER since surgery due to adrenal crisis, but at least I know what to do when that happens and can take care immediately.  And as I’m sure most of you would agree, I treasure every healthy day.

Related articles

In Memory of Natalie Fay ~ April 21, 2008

April 21, 2025

MaryO Adrenal, Cyclic, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

in-memory

This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

~~

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first met Natalie at a local lunch in November of 2001 and have seen her several times
since then.

Natalie started the original “Dammit Dolls” that circulated around the country until people refused to pass them along anymore.

Some recent past posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008

Tributes and Memories on the message boards…

Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]

http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Cyndi K (What Now?) Undiagnosed Bio

March 3, 2018

MaryO Undiagnosed , , , 1 Comment

 

So – 55 years of age and it has taken me ….4 years to actually get to this point, but I suspect if diagnoses is confirmed that its been more like 10 years since the first symptom.

I am tired, kind of freaked out right now and alone. I do not have monetary resources and looks like my job is about to bust – so there goes insurance.

I am scared, lonely, and in pain. I have had emotional loss after emotional loss for the last 8 years and feel so stressed out at this point I am having “Hypertension Episodes” every other day for the last week. I ache.

I do not know how to eat this elephant – okay so I know that I have to write this journey but I will have to come back to this.

MaryO’Note:  Cyndi says also “In the process of discovery – all symptoms check marked. CT Scan completed 2 days ago – waiting with anxiety for results of blood work and scans.”

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TONIGHT! Interview with Fabiana

October 21, 2015

MaryO Adrenal Surgery, BlogTalkRadio, Golden Oldies, Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments, Update , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

 

interview

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!

~~~

Fabiana had transsphenoidal surgery (pituitary) July 30th 2004.  She had a recurrence after seven years of being Cushing’s free.  A second pituitary surgery on 10/26/2011 was unsuccessful.

Another Golden Oldie, this bio was last updated 9/12/2015

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.

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