Wednesday, July 8, 2009

Brenda, steroid-induced Cushing's

I have had Cushing's for two years. I have been to Mayo Clinic four times in the last two years, and just recently was accepted and seen at the National Institue of Health's Rare Disease Program in Bethesda, Maryland. I am from Michigan.

I am 34 years old-a RN, BSN who had worked for ten years happily as a nurse-then I became quite ill due to my Interstitial Cystitis-my Urologist put me in the hopstial-I came out of the hospital after five days, and ten days post hospitalization I awoke with severe joint pain, pitting edema, night sweats, fever, Short of Breath, I had a seizure the next day.....I had only been 135 puonds-very active, worked out-played the clarinet in my church orchestra weekly for three services.

After this illness-I was put on steroids to decrease the joint swelling-turns out I was exposed to Legionella disease during the hospital stay and most likely contracted it after taking a shower at the hospital. My world has been turned upside down since then...I was gaining 10-12 pounds of fluid WEEKLY...finally when I went to Mayo Clinic my first visit in 11/07, they felt the Cushing's was related to the steroid's I was on-which was not a high dose, to try and decrease all the swelling-no one thought could pin point why I had so much fluid retention-this was about four months from when I first became ill and I know was 195 pounds! I returned again to Mayo 1/08 and then again 4/08....in April of 2008 it was an urgent visit-I had been passing out DAILY in my condo in Grand Rapids, MI-two hours from my family-my friends would find me-or I'd wake up fallen on the floor, etc-my internist had me come immediately to Mayo-I was set up with a leading Endocrinologist at Mayo and within 24 hours I was diagnosed with Cushing's Syndrome and Adrenal Insufficiency-my Urine Cortisol and ACTH stim test were awful. I was put on Replacement Hydrocortisone (At this point I had been off ALL steroids for five months-but continued to gain fluid-I was now 240pounds...they did a tissue biopsy-when they cut into my skin fluid came running out-they-at Mayo had NEVER seen anything like this!). After returning from Mayo-(my father took me for the ten hour drive each time, we would be there about 8 days-he was such a rock for me as I had always been the independent child in the family...now I needed help-and that was hard to accept). I forgot to mention at this point I was developing many skin rashes, my hands looked like they had been chemically burned all the way up to my elbows....I had allergy/PATCH testing done-found out I was literally allergic to almost everything in the environment-All preservatives in medicine, formaldehyde, lanoline, rubber, adhesive, all chemicals, fragerances-even toothpaste, makeup, it was unreal!

Five days after returning home-I ended up in the hospital in GR-I had a secondary cellulitis/bacterial infection with fever on my hands and arms-I was put on IV antibidics ...unfortunately the "hospitalist" I was assigned (In Michigan your internist doesn't round on you-you are assigned a hospitalist to take care of your inpatient care)...anyways-he didn't believe I needed to triple my steroid dose when ill-so he refused-I fell into a coma that day! Thankfully one of my good friends, also a RN, came to visit when all th staff was trying to awake me-and my friend said, "my God-she's in an adrenal crisis!" Once they got the Cortisol in me I was okay. But that was terrifying-I could hear everything the nurses, and medical staff was s aying and I couldn't talk, blink, move anything-I had tried to call my internist before I slipped into the coma-but I couldn't talk-I remember hearing the receptionist-but I coudln't talk-they found my cell phone on the floor where I had dropped it.

it has been a hard road-i returned to Mayo 11/08......at this point I was 300 pounds-they did a full body CT, MRI's of knee's, etc-all my tissue is full of fluid-they honestly wre not sure what to do-they just hoped that by tryijng to wean down on the steroids my body would start making aCTH and "Cortisol-I brought intormation on the Rare disease Program at the NIH-my internist at Mayo and in Grand Rapids, MI referred me-I also sent a letter with photo's. I kept a photo journal from the beginning of my journey-taking photo's of my striae, abdomen, buffalo hump, arms, legs, abdomen, and SEVERE fluid retention - I took these photo's monthly so the doctor's could see how this progressed-this was one of the most helpful things I did.

Thousands are referred to the Rare Disease Program-only 50-100 are accepted. I was accepted. My father and I flew out to the NIH May 17th and returned May 22nd. They paid for our travel, all hospital charges, and lodging for my father at the Safra Lodge there on the NIH campus.

I met the guru of Cortisol-Dr. Nieman-she was incredible. It was an amazing experience to be there-like Mayo-their philosophy is "we are here for the patient" unlike many doctor's I had run into in Grand Rapids-I'm sure many can relate to some doctor's that don't even have ten minutes for you-here and at Mayo then spend 1-2 hours with you-you are their priority. It's refreshing.

They changed my replacement steroids from Prednisone to Hydrocortisone, I've slowly been weaning-but I'm stuck at 10mg in the am, 5mg at 2pm, and 5 mg at 6pm. I also had many other consults while there.

Currently I have a WONDERFUL internist in Grand Rapids-I had to change doctors 2/08-I had been with a family practice doctor and this was just way out of his expertise, I also have a wonderful Urologist, Dr. Casamento whom has been my urologist for over ten years-he has been SO kind and helps me handle my Interstitial Cystitis.

Other than that I have transferred my care to Univ. of Michigan. I have the Chief of Endocrinology at U of M as my Endocrinologist-he is awesome-so intelligent-and he works with the NIH and my internist to help formulate a plan.

I also have a wonderful Rheumatolgosit at U of M- I have a lot of damage to my knee's-and as I said-my weight is now at 300 pounds-they say over 50% is fluid-and you can tell-my skin is SO taught, nothing is flabby....I've been on so many diuretics-nothing helps-next step is to see nephrology at U of M.

They Cushing's Syndrome symptoms are hard to deal with-you have to learn to adapt-the abdomen, the buffalo hukp, the stria-I look just like the diagram on your website-I had to cut my hair very short as I was sweating ALL the time-another bad side effect. I have had to go from being able to live in my third floor condo-to moving home to my parents-I can't do stairs anymore-I do PT exercises daily at their home-I have to use a walker at all times, I also have to sleep upright-as my abdomen is SO distended if I like even at a 45 degree angle I feel like I'm suffocating. I PRAY for a miracle-the NIH and Mayo had NEVER seen someone with such severe symptoms of Cushing's. They now are not sure if I have primary or secondary adrenal insufficiency.

In the meantime I have some major damage and arthritis in my spine/knee's ankles-but I'm not a surgical candidate per my ortho doc....he's just doesn't know how to help me.

I think the hardest things for me are just ADL's (Activities of Daily Living) shower, even using the bathroom, hygeine, etc....and still not allowing anyone to help me-I'm stubborn that way-but the worse the abdomen distends, the worse the fluid gets-the harder it is for me.

Thankfully I have so much loving support from family and friends-but qualify of life is so low. I no longer get out of the home-it's too hard-and the stares I get from people, and the laughs because of the Cushing's is hard....I had been getting my groceries using an Amgio cart-but now that I'm living with my parents they take care of that.

Thankfully I had no problem getting disability-but COBRA and my medical bills have taken my entire savings. My church family even pays every other COBRA-but at 540.00 a month-plus all my other bills/mortgage, etc-it's been a devestation financially.

I wish everyone with Cushing's the best of luck-just know you are NOT alone. My faith has sustained me in hard times-I can't imagine not having faith to get throgh this.

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Mary (Mary), pituitary bio

I am 38 and had three transphenoidal surgeries for Cushing's.

I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.

That did not cure my Cushing's so I went on to have a laproscopic adrenalectomy followed quickly by galbladderproblems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.

I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.

I have two adopted kids from China as a single mom who are 12 and 13.

I know have problems with fibromyalgia and arthritis.

Email Mary

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Monday, March 9, 2009

Jen (AuntieNoWay) , adrenal, steroid use bio

In 2002 I was an Air Traffic Controller in the United States Navy. I had graduated top of my class as the honor graduate and I was the only female in my class. I had also been one of 4 people and the only female, to win an award upon completion of boot camp and it was presented to me by the Master Chief Petty Officer of the Navy. According to all my evaluations I was "a rising star" and "expected to do great things". I was stationed at Naval Air Station North Island which is a base located on Coronado Island across the bridge from San Diego in southern California. Things were going well for me and then all of a sudden it all fell apart. I started to get very ill, I gained an obscene amount of weight in a short period of time, suffered from insomnia, anxiety, uncontrollable bowels, constantly irritable, excess facial and body hair growth, stopped menstruating, paper-thin skin that bruised to the touch, brain fog, a round face, sunken in eyes with bags under them, and though I went repeatedly to medical, they told me and I quote, "Quit smoking, quit drinking, dump your boyfriend, and go to the gym" and that would resolve my problems... Well it didn't, I got worse. It affected my work and every aspect of my life. I was constantly being told that I was not sick, it was all in my head and that I needed to be seen by psych and be put on anti-depressant medication. Being in a career that was mostly men I suffered constant comments and criticisms and even ate my lunches in the women's locker room because I was embarrassed and ashamed of my appearance. I was treated even more poorly by the women I worked with and my superior officers who were cruel and didn't take my symptoms seriously. When I really started to get worried about my health was when one day I was in the shower and looked down at my stomach and noticed these horrible purple marks all over my body. They had just appeared over night. I went immediately to medical and asked to see a doctor. I showed her the marks and she looked at me like I had a screw loose and said, "Um, those are from being pregnant. Have you ever had children?" To which I answered, "Not that I am aware of! You have my medical records, you know I have no children! What is going on!" My mum, who was worried about me, came down to visit me from Seattle and when I picked her up at the airport she didn't even recognize me I had changed in appearance so much.

Finally, a doctor by the name of Lt. Graves showed up at North Island right out of medical school and took one look at me and was certain I had what was called Cushing's. She had remembered reading about it in med school.

She saved my life.

All it took was one blood test and I was diagnosed. I had a tumor on my left adrenal gland that was causing my left adrenal gland to over produce the hormone cortisol.
I was diagnosed but they waited 2 months to get me in for surgery and during that time my weight jumped dramatically from 180Lbs to 239Lbs and I was sicker than ever. I was now so large my uniforms no longer fit and when I filled out a request signed by my doctors to wear civilian clothing it was denied by my chain of command. I finally had to submit a request for maternity uniforms and had to wear them to work and everywhere on base even though I was not pregnant. I smoke cigarettes so every day I had to suffer the glares and threats of other members of the military who didn't know my situation saying that I was a child abuser and a horrible person. I It was so hard and really took a toll on me. It didn't help when I told people it wasn't a baby it was a tumor. They thought I was a bad person. I didn't want to get up in the mornings anymore. I wanted to hide under a rock and disappear.

Finally in August 2003 I had an adrenalectomy at Naval Medical Center San Diego and they took out the left adrenal gland and the tumor. The surgery was supposed to take 4 hours but ended up being over 9 and there were complications. Another team had to be called in due to the trouble my surgeon was having and the fact that I was so filled with this hard lard-like fat they had difficulty getting at my adrenal gland. I was treated horribly in recovery, and unless my mother was there I was ignored by the staff and luckily I was sharing a room with an officer's wife who was able to summon the nurses for me because they didn't respond to my call button when I needed help to get to the bathroom. It was horrible. Two days after coming home from the hospital I had what I thought was a heart attack and I actually was in so much pain I told my mother I was dying. She called 911 and the paramedics came. They dropped me twice getting me on the gurney and were rude and made comments about my weight. I was rushed back to the hospital to find that I was almost septic from all the pain medication I was taking.

I also had hernia repair surgery in February 2004 and now I have titanium mesh secured by titanium screws covering the entire inside of my abdomen. It really freaks out x-ray technologists if I don't tell them beforehand.

I started to get better and the weight was just falling off but then I stopped recovering and began to decline in health. The Navy doctors still found nothing wrong and told me I was "malingering" but my mother knew there was something else going on with me. I was seen by psych again and placed on anti-depressants again. They tried all of them but nothing helped. The Navy at this time was now trying to get me discharged because according to them I was no longer fit for service. So I was not only fighting to get treated I was fighting to prove my medical situation to a board of officers who had no clue what I was actually going through.

We went to see Dr. James Webber in San Diego and he diagnosed me with Hashimoto's Auto Immune Thyroiditis. He also found that my right adrenal never started pulling it's weight and diagnosed me with Adrenal Insufficiency as well. He started me on Armour Thyroid and Hydrocortisone. I started to slowly feel better.

So after years of trial and error of medications and going to a ridiculous amount of different doctors, I was finally starting to feel better, but the damage caused by the rapid weight gain and weight loss turned my skin into a stretched out mess! I was promised, and its written, in my medical record that I would receive re-constructive plastic surgery to repair the damage caused. But after I had an abdominoplasty and umbilical hernia repair surgery in 2005 the Navy decided that I was unfit to continue my contract and tried to discharge me without any disability.

I fought them tooth and nail with the help of my new division officer, Lt. Candace James (my hero), but still ended up with a pathetic 30%. I took my records and ailments to the VA and they gave me 70% which is better than 30% but they still didn't include all of my issues... I will continue to pursue all avenues to rectify this situation. I did not go to war in the traditional sense over in Iraq, but I feel that I fought my own war and my enemy was not only Cushings but those very people who were supposed to be keeping me healthy and safe. It is a war for my health and my life that I am still fighting.

When I moved back home to Seattle in late 2005 I had to find a new doctor and I looked all over. I went to many who actually had the nerve to tell me, "Wow, you sure have a lot of issues, are you sure you actually have all these things?" Having retired military insurance is affordable but most doctors, don't accept it, as they don't get enough money from the insurance company. So it took me years to find doctors that would see me with this insurance. Seeing a traditional Endo now instead of Doctor Webber I was taken off the Armour Thyroid because my new doctor doesn't agree with that method of treatment and placed on Levothyroxine and Cytomel. As well as adding Fludrocortisone and changing my dose of Hydrocortisone. I take Lonox and Hyoscyamine for my IBS. I had gone to the ER when I had an IBS episode which they misdiagnosed as shingles of all things, even though I had no symptoms of it, and when I gave my Medic Alert Card to the woman who checks you in, she said to me, "I'm not writing all this down! This is too much! You can't have all these things!" I explained to her that she had a copy machine and didn't have to write it all down. She could just make a copy. But the bad treatment continues everywhere I go it seems. Even with a diagnosis and surgeries completed, they still doubt my illnesses. It makes me sick.

I am now retired, and when I tried to get my plastic surgery through the Naval Hospital they told me I had to "pay out of my pocket" because I was no longer active duty... how convenient... So I submitted it to my insurance time and time again and they kept denying it, saying "it was cosmetic and I could live without the repairs..." well yes, but not comfortably, and if they had paid attention to my symptoms and not ignored my health conditions I wouldn't have gained 100lbs and needed re-constructive work done in the first place!

So thankfully my grandmother and parents made it possible for me to begin the repairs November 2007 and I had part two July 31 2008. I was finally back down to size 29 in jeans and I was feeling great! Although its not all fixed. I have had every possible treatment for my stretch marks that are up to 1/2 inch deep in places, making me look like I gave birth to a litter. I look like I have been mauled. Nothing has helped from laser treatments, to supplements. I wish that they had payed attention to my symptoms and they never would have happened.

In November of 2008 I started working for UPS as a seasonal driver helper for the Christmas rush and I was on my feet 14 hours a day hauling packages up and down driveways and stairs and it was really strenuous and active work. Everyone I worked with lost anywhere from 10-25 pounds this peak season because we were so busy and when I went to put on my new jeans my mum had bought in October for my birthday I found I couldn't pull them over my hips. Thinking this strange since I was so active and had just had a ton of reconstructive surgery done, I went to my primary care physician who weighed me and I found I was up to 171lbs. Now I know that that is not acceptable for me. I was weighing between 155-160lbs after surgery and swelling and to jump up like that was not okay. It should have gone down to 145-150lbs after the swelling decreased and since I was so active. She told me I was being silly and even knowing my history with Cushings said to me that all women gain weight as we get older... the same stuff I heard back in the Navy when no one was listening to me! I am 28 years old! I hardly call that "getting older". I was finally able to get in for an appointment with my Endo here in seattle in February 2009 and when I got on the scale I was 176lbs. I had gained 16lbs since I saw him pre reconstructive surgery, which included liposculpture so I shouldn't weigh more after the surgery than I did before it. My face has started puffing out and I have dark circles under my eyes. My skin is dry and cracked on my hands and feet and no matter what kind of shampoo I use, I have flaky dandruff that wont go away. I am irritable and anxious. I am lethargic and exhausted all the time. I never feel good and I wanted him to tell me what was going on. He ordered blood work and a 24 hour urine test which I completed and I am now waiting for the results to come back.

When I was in the Navy I asked about a possible reccurence and they told me again and again that I couldn't get Cushings again but the more I research it and talk to people the more I feel that they didn't have a clue what they were talking about. My two scenarios are possibly a reccurrence of Cushings or my right adrenal gland is finally starting to work and I and I am having Cuhings-like symptoms due to too much steroids. Right now I am so frustrated and worried. I don't remember being 23 or 24 due to all my medication and the fact that Cushings ruins your memory. I know Cushings took my 20s and I don't want it to take my 30s as well. I have recently applied to be an Air Traffic Controller for the FAA and I don't want a relapse to ruin my chances of this wonderful career again like it did back in 2002.

Since it didn't have my other diagnoses listed above I thought I would include them here. Maybe others have had the same issues I have? Maybe I can help someone?

History of Cushing's Syndrome, Adrenal Insufficiency, Hypotension, Hypoglycemia, Hypothyroidism (Hashimotos Disease), Hiatal Hernia (GERD), Abdominal Hernia Repair, Umbilical Hernia Repair, Urinary Tract Infections, Irritable Bowel Syndrome (IBS), Kidney Stones, Hematuria, Insomnia, Chronic Back Pain, Neuropathy, Motion Sickness, Tinnitus, Mycoplasma Pneumonia, Sacroilitis. I was a very healthy person before I got sick... I don't know why this happened to me. I want it to go away. I want my life back.

Thank you for letting me tell my story. It has been a long hard journey and a very lonely one. I am glad that I am now able to share with others who actually get it and know what I have gone through. I will keep you updated as I get my results.

Mahalo.


Email Jen

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Friday, March 6, 2009

Stephanie (steph), Steroid induced bio

About 2 and a half to 3 yrs ago, i was being treated for a condition called Reflex Sympathetic distrophy.

While they were treating me, they were injecting me with steriods. And from that symptoms started showing up that had nothing to do with my rsd condition like; the red moon face, the obesity, the irregular periods, and the striae marks.

Due to the VA ruining all the tests they did, about 6 months later i was rushed to the hospital near death, when the doctors at the hospital did the tests they discovered that i had cushing's syndrome and that i was lucky to be alive.

I am now cured of cushing's however i still the striae marks all over my body and am still somewhat fat. I am afraid i could get sick again and am very self concious about my body.

Email Stephanie

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Monday, February 16, 2009

Sandy (jsdewys) Steroid-induced bio

Hi; My name is Sandy and I live in Holland, Michigan. I was diagnosed ( double tested thru Mayo Clinic,test were sent there)

Feb.8,2009. My story is very long so the short version for now. Back in 1994 I was in a bad car accident and had back injurys.

After trying pain pills, therapy, ect I went to a large Pain Clinic. After medications did't work they implanted a Morphine Pump into the spinal canal to control the pain. 2 yrs. pass,emergeny appt. with Pain Dr. found granduloma's on my spinal cord. In fact they mygrated 9" up the spinal cord, the spinal cord specialist took out all me could-or dared. He went as far as the lung nerve function would be affected. I've been on anti-inflamitory meds and Medro shots in the spinal cord dura since1997.

Fast forward.. I have been on tons of medication, lots of hospital stays...now everything makes sense.
There was ONE reason (I find out now) all this stuff was going wrong.

I'd really like to connect with others, expecially from Michigan!!! My e-mail is jsdewys@yahoo.com. I am not very computer educated. I know how to e-Mail and look things up but that's about it. The following is a long..list of my symptoms or problems that I have. In no paticular order.
Sleep problems
Purple stretch marks
Muscle spasms
Restless leg syndrom
Mouth gum recession
Mouth sores-Lichen Plantus
Back tissues swelling ( Buffulo Hump)
Falling Higher blood pressure than normal all of a sudden Lymphedema
Knee Pain Bursitis
Pubic and underarm hair dissapear
feeling Ill-flu like all the time
Cateracts
Slow healing
Poor veins, hands,arms
18" lg. bowel removed(died)
Foot Neuroma
Shingles
Stomach pain
Urination problems
Excess sweating-dripping wet
extream fatigue- muscle soreness
Bloated feeling
Facial Hair
Osterporis
Bruse easily
vaginal problems (dry-painfull sex)
Pain in forhead(middle)
Migraines
Darkening of skin
uncontrollible pain( Roxenol,morphine,dilidid didn't help)

Did the blood ,24 hr. urine, and salva test (send to Mayo clinic for diagnoses) done 2 times because my Dr. said,"you don't have that, quit looking up things on the net." My morning blood draw was 1.7micrograms. my night was 19 micrograms "

no wonder I can't sleep. My husband and son have been there 100% all these years. I have however lost the closeness of a mother/daughter relationship with my daughter. She thinks I'm nuts, faking + many more discriptive words.

Being diagnosed has been on "ah ha moment" being started on hydrocortisone is a roller coater ride. Up ,down, uncontrollible pain. but as I bio said, all this and I'm still alive.

Sandy DeWys Holland, Mi jsdewys@yahoo.com

I too read many of the Bio's with held breath, tears flowing, from the storys that now were bringing so much sense.

~~~~~~~~~~~

She also submitted this:

Hi, I'm Sandy DeWys from Holland,Mich 49424 My story begins when I had a car accident in 1994. I had back injuries,sent to a Lg pain Practice, doing epidurels into the spine .

In1996 I had a morphine pump im planted into the stomach with tubing going directly into the dura matter right next to the nerves. :fast forward.2 years..Had an MRI where they found granduloma's covering the Dura mater 18' up the spinal cord. Had more surgery ,to take the morepine pump out and try to get as many granduloma's out as they could. I had to walk with a cane because of nerve dammage. Had lots of Pain Meds, including Dura Morph injections and trigger point injections..fast forward to now:

Been diagnosed with cushings(steroid meds caused and extream pain depleated the adrenal glands. Started on hydrocortisone pills. The roller coaster begins.

The ups and downs I never expected this. I just can't believe the Dr.s didn't catch this before, with all the symptoms that I have.

My husband and my son are my rocks. I regreatfully say I lost my mother/daughter closeness, my daughter thinks I'm crazy, and is very imbarrised that I use a cane to walk.

She's 27 and has her own house now. I've been in a Pain support group for over 10 years. I can't tell you enough how important that was to keeping things in perspective.

Just being able to talk to someone like yourself. I learned a lot of tricks to the medical situations. What to do,what to take along. The BEST thing I learned was to make a notebook with all your records in one folder. To have atyped list of medications, so you can just hand it to someone when needed. I color coded mine to match up Dr.s with which medications. They tell me it's most helpful.

This site is just AWSOME so much information. You did a GREAT JOB when you set this up.
Thanks again;
Sandy DeWys
odd things, but the Drs. treated them one by one.

Ater going thru the cushings pages I find I have a host of symptom's, some are really strange that cortisol would cause. No special order;
Sleep problems
Darkening skin-looking tan
Uncontrolled pain-more than normal
Pain between eyes-forhead
Vaginal problems
Bruse easy
Osterporis
Anit-inflamatory meds-steriods
Facial hair
Bloated feeling
extream fatigue-muscle soreness
Urination problems
Stomach pain on and off
Shingles
Pubic and underarm hair disapear
Lymphedema
Foot Neuroma 18" of lg. bowel died
Spider veins
slow healing
Cateracts
feeling Ill/flu like
Skin tags Red moles
Bursitis
higher blood pressure than normal
falling for no reason
Back tissues swelling(buffulo hump)
weight gain unexplained
Mouth sores-lichen plantus
Mouth gum ression teeth spreading
Restless leg syndrom
Breast tenderness
purple stretch marks
sleep problems Lethargy-lack of sleep
Snoring
Exhaustion after ninimal effort
hard to urinate
Irritable bowel syndrom
Edema
Gum problems-bleading
fingernails peal
increased gray hair-all at once
sweaty skin slow pulse-shallow
dry vagina-painful intercourse Low sed drive
larger feet-larger shoe size
spacing between teeth
skin tags
red blood moles
swelling/hands-feet
blurred vision
Low blood pressure
Heart Palpitations
Anxiety
feeling of dread
puffy eyes eye
discomfort-itching

Email Sandy

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Monday, February 2, 2009

Heather (HeatherKY), pituitary bio

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

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Monday, January 19, 2009

Harley (HBW), adrenal and pituitary bio

My bio for the Cushings and Addisons web site.

Hi my name is Harley I'm a 56 year old male. In 1985 I broke my back which reqiured several surgeries over a period of 10 years, which caused a severe amount of pain. Then about 10 years ago I was diagnosed with addisons disease. I did'nt have all the symptoms of the disease but I've been diagnosed by my family physician plus other physians have confirmed the diagnosis also. As we all know this disease is very hard to detect. I've been on prednison and high doses of hydrocordison over the past 5 years. I've been hospitalised numerous times with adrenal crisis.

I was also diagnosed with a pituitary malinoma and have been treated that over the past 10 years. I have MRI's every so often to see if it has enlarged.

I started seeing a massage therapist for the past 4 years.Starting with my back which has really been helping. She also treats me with oils which I was very hesitant at first but have grown to believe in them in many ways. My doctor has also discovered that my testoterone levels were extremely low so he has been giving me shots for that every 2 weeks I have recently been diagnosed with Cushings do to the high doses of steroids I've had during this time. In the past I've seen three endroconligists to avail.

Needless to say my wife and I have been very discouraged after all they are supposed to specialists. My last hospitalition my family doctor talked us into seeing another endo as my doctor said he was afraid of the shape I was in he was afraid of me not making it. I thank God for the faith that my wife and I have or I'm afraid this would have been more than we could handle but He has given us the strength to keep moving on.

God directed my wife to a gal that is a Certified Holistic Practioner that also has Cushings and Addisons herself. She has been living with this for the past 7 year. This is what prompted her to start her practice of healing. She started treatin herself first using oils and changing her diet and it worked for her she is stable now and doing much better. This is a real blessing because she has studied this disease indepth plus can relate to what I'm going through. It's been great because before this I had know other contacts as we all know these are very hard diseases to detect. The new endo has set up a series of tests for me which I started a week ago and have another series this next Monday, after he gets the results of these he will decide where to go from there.

I'm so glad that God has finally set up a support group for me but they are also very strong in faith which continues to feed my wife and I.

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Wednesday, January 7, 2009

Joanne (Josie426), pituitary and steroid-induced bio

I am 39 yrs old-and for 35 yrs I have been battling life threatening asthma-i have been in respiratory failure/cardiac arrest 5 times in the past 17 yrs. I had been diagnosed with COPD in the summer- I was never a smoker but because of recurrent bronchial and pneumonia infections, my body has had enough.

I was just diagnosed with Cushings after 10 months of thinking i was nuts-i have gained over 50 lbs- I can no longer work because of the asthma and cushings-I look in the mirror and try to figure out who the person is I am looking at- because it is not me.

I have been hospitalized this year because of heart failure issues, repeated asthma issues etc-finally my nurse ractitioner sent me to the endo as an emergency-he saw the bloodwork and examined me and said I am in an acute stage of cushings-Thank God! Finally an answer.

I feel worthless and my medical bills keep piling up-How does anyone deal with this all at once? I am so tired and just would like some relief...I am unable to stop the steroids and the endo thinks the damage has been done to my pituitary because of sinus surgery I had a few months back-I used to be strong- but lately I am just so overwhelmed-any suggestions-

I have a therapist and she is wonderful- but does anyone have advice as to how to just keep going when you feel like such crap???

I am glad to find a site where people can relate- I hope to hear from some of you!

Email Joanne

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Monday, December 1, 2008

Valerie (vj713), steroid-induced bio

I developed severe asthma 6 years ago. At that time the pulmonary doctors put me on high dose steroids, and I have continually been on high dose steroids since then. As a result, I now have Cushings,addisons and type 2 diabetes. I have tried so many times to get off the steroids but I end up very sick and hardly able to breathe. I'm searching for help.

I hope someone is out there in my shoes so you can tell me how you are coping with this disease.

Email Valerie

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Thursday, November 6, 2008

Bob, steroid-induced Cushing's

59yro male with Cushing's due to asthma inhaler, and a period(8yrs) of oral steroid dependence.

My diagnosis of "suspected" Cushing's was by a dermatologist, actual conformation came from a local endo.

SOON hope to be on Alvesco, another inhaler with very little systemic side effects

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