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Sheryl, Adrenal Patient

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I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974. 30 years ago.

I’m sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.

By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!

I did have to be hospitalized on 3 or 4 occasions afterwards just because my body was still adjusting and because this is a rare disease not too many docs understand it. At any rate here I am 30 years later and this is the first time I have ever been able to really talk to anyone like me.

I kept asking my docs if there was anyone I could talk to, but they were not aware of any. I am 51 years old now, and feel so very uplifted that I can finally share with others my experiences of ups and down. I am married to the most wonderful man in the world, who is very supportive in every way. We have 2 children, our daughter is 21 and our son is 19. Our son is also a special needs person, having been born with cerebral palsy. He uses a wheelchair and is mentally delayed. PLEASE NOTE: His birth defect was not in any form or fashion caused by my having had Cushings. Do not be afraid to become pregnant and give birth. Unless medical information has changed for this area-we were told by many specialists and OB’s etc. that CP did not result from the Cushings.

I have been going through perimenopause and menopause since I was 38. (I was 21 when I had my surgery.) It has been difficult finding a doc who believed what I was telling him. I have been on various hormone medications for the menopause. At present I am taking Prempro for it. In all, the medications I am on include 30 mg. of hydro-cortisone, 1mg of Florinef and 30 mg. of Prozac. I know Prozac has been bad for some women, but for me it was a life saver. I had severe mood swings more than just once a month.

I would like to correspond with anyone who would like to know what may lie ahead after surgery, and also anyone who might be in the “older surgery” area. Just knowing that this site exists is heart warming! Hope to hear from you all soon. Love you all-Sheryl


Listen to Sheryl’s Interview here.

 

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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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Aimee, Adrenal Bio

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I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.

Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.

The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.

Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.

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A New Newspaper Article on Jordy

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Today’s article: Father-of-two, 42, who was scared of heights now skydives from 17,000ft with NO FEAR after surgeons removed his ADRENELIN gland

Mr Cernik suffers from ultra-rare Cushing’s syndrome which causes high levels of the hormone Cortisol – a steroid that regulates the metabolism and immune system.

In just three years, former Territorial Army recruit Mr Cernik, who is 5ft 8in tall, ballooned from 11st 5lb to almost 17st.

To treat the condition, Mr Cernik underwent a series of brain operations and two procedures to remove his adrenal glands, which also produce adrenalin….

Read more: http://www.dailymail.co.uk/news/article-4418714/Father-two-42-no-fear-operation.html#ixzz4ebhHkMsI

Read more about Jordy.

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Jody (jodiann), Adrenal Bio

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Originally posted January 6, 2008

My mother had Cushing’s Syndrome with pheochromocytomas and had a bilateral adrenalectomy in 1968, but developed pneumonia post surgery and died after 3 months in intensive care.

I have thought that I was starting to develop symptoms and was even see in her endo Dr. for years, but I was always told I was being paranoid. Then in the past ten years I have gotten diabetes, the buffalo hump, put on 100 pounds, sore joints, hypertension, low potassium, high cholesterol etc.

I finally got a CT scan due to shortness of breath, and asthma, and they found bilateral multinodular adrenal hyperplasia.

If it’s not Cushing’s Syndrome, then is there something else adrenal wise it could be? It sure seems like Cushing’s to me.

Update December 30, 2007

I was diagnosed with Cushing’s syndrome approx. 3 years ago, after gaining over 100#s, developing diabetes, high blood pressure, fatigue,muscle weakness, moon face,buffalo hump,many tests later,it was discovered that I had bliateral multinodular adrenal hyperplasia,and got the diagnoses finally,,,

my mom died from complications from a bilateral adrenalectomy in 1978,she had Cushing’s syndrome with pheochromocytomas,,so I watched her symptoms develope, and had felt sure that I was getting the same things, and finally it was confirmed,just a little difference in the diagnosis,,

however,I am having a terrible time getting any understandin, sympathy, or belief, from my oldest daughter and her husband. They believe,and tell me often, that all I need to do is diet,and exercise,and I would lose this weight,and look like I used to,,it is so depressing,frustrating,and hurtful,,,

the depression you get with the disease just adds to make me feel worse,,I’m taking an antodepressant, but they brought this up again at Christmas,due to me not wanting them to invite people that I hadn’t seen since before the big wt. gain,and appearance changes,,,I ended up crying most of the afternoon,,and it makes me feel like such a baby,,,,

I’m usually pretty good about not needing any body but myself for support,,but this just really has hurt me. I’m thinking of sending them pictures of patients with the disease that I’ve gotten on the internet,,although the son in law said he had done his own research and found that diet and exercise apparently was all that we needed to do,,,don’t know where he found that info from though,,,

Update January 6, 2008

CUSHING’S SYNDROME

I was finally diagnosed in approx. 2004,after I had developed diabetes,htn.,shortness of breath, IBS, high cholestero,major muscle aches,moon face, buffalo hump,and my hands and feet had actually gone up one ring,and shoe size and also had on-going depression, mood swings, anger issues,I could watch myself gain weight.

I joined curves,went every night after work, and still gained weight,,even after exercise for those three months I never did seem to regain any muscle strength or ability,,I still had trouble getting up from chairs,or walking any distance, unless I was pushing a grocery cart, or a stroller,,,I had trouble even carrying my groceries in from the car,i would be so out of breath,,I had to get a disabled parking sticker so I could get into work,,,as I was so out of breath if I parked in the lot across the street it would take me three stops for breath each day to make it in,,,and tired, I was so tired,,my favorite past time was sleeping,,I could sleep any time, and still be tired.

My mom had died from complications from a bilateral adrenalectomy due to Cushing’s Syndrome in 1978, and I had watched all of the changes she and her body had gone through,and felt sure that I had developed the same things, but I couldn’t get anyone to listen to me,,,until a unrelated chain of events lead to me getting a U/S of my chest, and a sugested follow up,which I got on a larger scale which showed something wrong with my adrenal glands, then an MRI of them revealed bilateral multinodular adrenal hyperplasia,,,and finally I got hooked up with a good endocrinologist,,am now getting better follow-up of my diabetes and am on ketaconazole to suppress the cortisol production,,which has helped somewhat,and is stopping the excess cortisol,and no more weight gain,,,but hasn’t gotten rid of any of the symptoms either.

There are a lot of times that I look in the mirror and wonder where I am, or where the real me went to,,I don’t look like the me that I used to be at all,I have gained over 100lbs.in the past 13 years,,,and the fight against the depression, the muscle aches and pain, and fatigue every day or so exhausting,,my Doctor doesn’t want me to get the adrenalectomy due to the loss of all steroids,and how difficult it is to regulate them after the surgery. He also told me that you lose you fight or flight response because you don’t have any natural adrenaline,so your reaction time is not very good,,,,,and I have three grandkids that I drive iwth and take places,and I am a nurse and have to be able to react fast,,,,I also feel that he doesn’t think that I am a good candidate for surgery.

So there it is,,and here am I,,,trying to deal with everyday life, and the lack of any understading or sympathy from some of my family,as they feel that I have gained this weight on my own, and if I just ” took better care of myself,and got some exercise” I would feel and look better,,,,,,,as if any one would do this to themselves,,,,,,:>( ,,,,,,,,,,oh well,you guys understand at least,,,,,,thanks for listening

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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Lisa (Lisa), Undiagnosed Bio

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undiagnosed4

 

44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to

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