After I had my daughter in 1995, I started gaining weight. I went from 110 pounds to over 200 pounds in a year. I had so many symptoms and was told to quit eating. My family wondered what happened to me. I never ate much. I was always the smallest one. One doctor even wrote me a prescription to get a dog. Over the course of 10 years, I was told I had possible MS, high blood pressure, diabetes, weight gain, severe depression resulting in several suicide attempts, hallucinations, declining vision, stress, severe fatigue, inability to work, divorce, personality disorder, inability to walk the stairs or walk for that matter and numerous others.
I went undiagnosed for 10 years. I was home sick one day on September 9, 2006. I was watching Mysterious Diagnosis and saw a woman with my symptoms. She had Cushing’s Disease. She turned out to be Sharmyn McGraw, a friend and mentor. I made an appointment for the next day. I asked my doc to test me for Cushing’s. I was diagnosed with multiple tumors in each adrenal gland called Cushing’s Syndrome. I was literally on my death bed. I was unable to care for all my kids and had given my cousin custody of my oldest son and my ex was given full custody of my daughter. I did manage to care for my son Gavin, who actually took care of me. Riding his bike home from school to make sure I was ok and riding his bike home right after school to take care of me.
I went through many different testing including vein catheterization to see which adrenal needed to come out first. I begged my endo to just take them both but with that it would mean I would have to be on steroid replacement everyday for the rest of my life in order to sustain life. I had surgery on November 14, 2006 to remove my left adrenal gland. I lost 45 pounds in 1 month but all of a sudden I was gaining weight once again. It was found that the other tumor riddled adrenal gland needed to come out.
On February 14, 2008, I had my right adrenalectomy. This was an even more difficult recovery. I was hospitalized for 15 days. Resulting in Addison’s Disease, I am unable to work. I lost my home, my kids, my animals, my car, my life. I have not been able to return to work and am on disability. I am just surviving.
The reason for this letter???? First, I want to bring awareness to these very rare life-threatening diseases, Cushing’s Syndrome and Addison’s Disease. My body has never recovered from the extreme weight gain and weight loss. The overproduction of cortisol for 12 years, has caused irreversible damage to my body. I have lost 40 pounds. My stomach hangs and gets in the way. I could never be intimate with anyone because of how my body looks.
Steroids everyday for the rest of my life is a hard pill to swallow. Forgive the pun. Lol
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.
Hi.., I am hoping not to confuse you all with my roller coaster history.
I have exogeneous Cushings which was close to impossible to diagnose.
In the past few years I suffered from the symptoms of cushings, celiac and hyperthyroidism.
Unfortunately all have autoimmune symptoms and I had everything at once. Like most or all of you I was fit and athletic but even as far back as 10 yrs. ago I wondered why I gained weight before or during summer. We are not talking about a lot of lbs. then just ten lbs. I then had to work hard in the summer to get it off.
Six yrs ago I was diagnosed with hypothyroid so that seemed to explain the weight gain but the thyroid medicine made me sick and over time I would test sometimes as hyper then hypothyroid. Sometimes I would test with both at once so I basically went untreated as no one understood it. Three years ago I gained 72 yes 72 lbs in one 3 day weekend while traveling.
My thyroid was out of control and I felt likeI was having a heart attack. I went to a well known hospital to an endo because there were no endos in my area. They figured out what my thyroid problem was and said that the nodules has been skewing the tests. I told them about all of my other symptoms that didn’t make sense and they felt that I had more than one thing going on.
At this time they were testing for high cirtisol but it was actually low. I had significant bruising then, paper thin skin, lack of muscle and all symptoms other than striae. They did a total thyroidectomy and recovery went well. I was not supposedto take thyroid meds until heart palps went away because I was hyperthyroid they said I would have excess thyroid retained in body for a few days. You can imagine how bummed I was when I stillfelt sickly. I went home gained another 52 lbs a month later and became much sicker.
That summer Celiac was diagnosed and all of those immune system symptoms disappeared when I went super strict gluten free. By this time I was eating nothing and was sick all of the time. I was diagnosed with mono (Dr’s were surprised and didn’t believe at first) and basically slept for 4 mos.
I had been getting allergy hayfever injections annually for 29 years but my Dr retired so I went to a family Dr to get the injection. This shot worked well for severe hayfever and was given in another town. The Dr called another allergist who said that I could not have the shot because it caused weight gain and Diabetes. You should have seen my face when I was pointing to my very sicck body! I went home and read the website about the shot and sure enough it causes Cushings. I think I basically slipped through the cracks.
The last two shots were administered by a triage nurse and then the doctor had retired. I always assumed that the endo had seen those injections on my medical records as I had signed a paper having them sent to my medical records before the Dr retired. The medical records from that Dr never transferred.
The scary thing is that I had the shot one month after a thyroidectomy which caused the 52 pound weight gain. The weight gain that I always got in summer was delayed and never showed at the time of the shot. The Dr was a conservative and good Dr and never broke protocol administering the annual shot once annually but you could repeat one half of the shot once a summer which I sometimes did. When he did see me towards the end I told him I was going through a thyroid problem which I was!
The real problems happened when I was refused the shot. I was traveling and when through major steroid withdrawal and had no idea what was happening. I was the sickest at this point and ended up several times in the ER thinking that I was having a heart attack. The cardiologists felt that my symptoms were classic adrenal insufficiency. I would sleep fully clothed thinking I would end up haviing to go by ambulance to the hospital. The hospital (endo) was able to track the retired Allergist down and he called me in October , 5 mos. after I was refused the shot. He said had he still been seeing me he would have definitely tapered me since I had been on steroids for 29 yrs. i had all symptoms but not stiae. The emotional mood swings were gone right away and overnight the 500 lb person that was sitting on my heart when I had AI vanished. The very next day I could walk 7-8 mles after barely walking across the room the day before. My question is withexogeneous Cushingsshouldn’ the weight be coming of nowthat I am 8 mos steroid free?
Had I gained this weight on my own I would know what to do to lose it i.e cut out desserts etc. i have such a restricted and disciplined diet anyway so it makes it hard to do more.
I am exercising daily, just walking, taking Metformin, 1000 mg although I don’ t have Diabetes and taking Vitamin D supplements. Am eating protein and veggies, no sugars. I am taking a low dose of estradial and progesterone due to going off the pill and am 55 yrs. old.
A veterinarian who treats this often in dogs said that they use a reversal drug. Do they have anything to speed up recovery? The steroid injections that I was given were so strong they were taken off a crash cart and have been outlawed in the UK for none lifesaving use. It seems like it will take awhile for me to be less”foggy”.
There has been little info on medicine-induced cushings and it always seems like once you stop it will reverse. I have only lost ten lbs. since June. The Dr.s said I am lucky I was hyperthyroid and celiac at the same time or I could havegotten a lot bigger.
I should have been emaciated without Cushings. Is there such a thing as a steroid therapist? Thanks although I am so grateful to feel better I am left with all the damageand yes looking like a troll. Thanks for listening!
Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary. I had some issues after my first COVID-19 injection (Moderna) but not too bad. My second injection will be March 15.
January 12, 2021 my Mom’s doctor called and offered her the vaccine but she didn’t want it. She said she didn’t go anywhere. True but my DH and I do – and she has a friend visit once a month.I joked to a friend that I could put on a wig and go as her since we have the same first name.
I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.Just a few boxes of how I’m feeling, if I wore a mask and so on.I am a strong believer in helping to participate in medical trials, as I mention below.This one is very easy and takes about a minute out of my day.Easy-peasy.
I’ve been on the Fairfax Waiting List since January 19, 2021.As of right now, they are still scheduling people from January 18 – I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.They have set up an interesting dashboard to track how things are going– https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data
I kept the CVS link open and checked it every morning. Everything was full until Saturday, February 13.I was able to register at about 5 am.When I went back about 20 minutes later, everything was gone.
CVS sent out an informative email with directions, dates, ics file to easily add to calendar,
On the day of your appointment:
•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.
•Bring your ID and insurance card, voucher or other coverage
•Don’t forget a face covering—wearing it throughout your visit is required
•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine
CVS tips for vaccine shots:
•Wearing short sleeves makes getting a shot easier and faster
•If you must wear long sleeves, dress in layers with the short sleeves underneath
•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.
And a short survey, which I took – just add up to 5 stars and write a short paragraph.
Monday, February 15, 2021: When I got to CVS, I found that everything was very well run.
I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.
I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor. Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).
There were 4 people ahead of me that I could see.It went very fast.I was in the little room within less than 10 minutes.
The nurse asked if left arm was ok to use.
She told me to treat the little quarantine form like gold.Take a picture on my phone, just in case.Maybe laminate after second shot.Keep it with passport.
She said that old folks (like me!) didn’t have as many issues after second shot.
The shot was very fast – I never felt it.
The nurse said if I get a headache, take Tylenol only. I said that was all I could take anyway because I have only one kidney.
I sat in the waiting area for 15 minutes to be sure there were no problemsThere were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.
I was glad to see that it was Moderna (MRNA) although I would have taken either.I have a long-standing issue with the other drug company, unrelated to COVID vaccines.
I posted on FB that I had done my first injection and a friend told me about registering at vsafe.cdc.gov for them to keep track of me after the vaccination. I signed up for that right away – and I noticed that CVS had also given me that link.
About 12 hours later (3:30 am) I got up to go to the bathroom and noticed that my arm was a little sore. No biggie.
Tuesday, February 16, 2021: I just got my first dose of Moderna yesterday – sore arm, so far.
The nurse told me yesterday that older people like myself (I’m 72) had fewer side effects since we had been exposed to more things over the years.I’m not sure how accurate that is but I’ll hold on to that hope until I get my second dose on March 15!
Wednesday, February 17, 2021: I had weird dreams overnight but I got up about 4:00 am.I did some work and fell back asleep until 10:15.
We didn’t go to water exercise. I decided at the very last minute, walking out the door. Reaction to Monday shot? I had a little headache, dizzy, congested, very tired.I should have taken more cortisone at this time but didn’t remember until 8:30 pm.
I slept more until about 2 pm and had very weird dreams – I don’t know if the dreams are part of it or not but I reported them to the safe.cdc.gov questionnaire.
I cancelled piano lessons for the day.I wrote to my students:
I am so sorry but I need to cancel today’s lesson. I had the first COVID vaccination on Monday afternoon. I was feeling fine yesterday so I assumed that I wasn’t going to have any side effects but they caught up with me today. It’s just a headache , a bit of congestion and fatigue (I’ve been sleeping all day so far) but I don’t think I would be at my best during XXX’s lesson.
See you next week…
After cancelling lessons, I went back to sleep until time for Pender’s 7 pm Ash Wednesday service. I was felling cold but I don’t know if it was chills or really a cold. I started coughing a little.
At night, I remembered I should have up-dosed. I told my DH that night if he ever noticed me like this again, it was the perfect time to tell me to stress dose. It never occurred to me during the day.
At that point, I realized I hadn’t eaten all day.I had dinner (I was surprised that I could eat it) at 9:25 and did my growth hormone injection.
I went to bed at 11 p.
Thursday, February 18, 2021: I’m a little more tired than usual but ok. I spent time napping and working alternated through the day.
Friday, February 19, 2021: Just the normal tiredness. Hooray!
Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.
In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.
A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.
Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.
Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.
The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.
A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.
Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.
I am a recent transplant to San Diego and I am looking for a Cushings support group. I acquired adrenal insufficiency and Cushings about 3 years ago. I was given large amounts of steroids for numerous sinus infections, pneumonia, and bronchitis. I am 61.
I am trying to find an on-line or actual support group for Cushings folks or adrenal insufficiency. The last 3 years have been full of illness, numerous hospital stays, and a lonely road. I am tired of living alone with this health issue and would be happy to share my story with a group or others who have walked in similar shoes.
I take 25mg of hydrocortisone daily to maintain my current health status. I will check the message board for others like me and hopefully I can connect either in person or on-line with a group, I find that living with this health issue to be frustrating and at times depressing. I am trying to overcome being the disease rather than just a person who has Cushings. At times I just feel crummy for no other reason than my system is out of whack. I hope that I can find a group to be a part of and to hear their issues and offer any help I can from my experience. I am in the process of getting a medical team of doctors and see an endocrinologist in December.
This disease has had me on a roller coaster for 3 years. I don’t plan a lot of things ahead of the event since I never know how I will feel the next day. I am hoping there is someone else who has dealth with Cushings and what medications they are taking to make the disease manageable.
Thank you for reading this and offering any advice on locating a group with like health issues.
Vicki added a second version of her bio:
I have been living with adrenal insufficiency with a diagnosis of Cushing’s syndrome. I was diagnosed in 2012 and was told that I received this condition from having been given large amounts of prednisone for pneumonia, bronchitis, and sinus infections. I have no issues with my pituitary gland but I still demonstrate the same symptoms as someone with an official diagnosis of Cushing’s and live with taking steroids. I have the buffalo hump, the sweats, feel tired all the time, problems sleeping, moon face and weight gain as well as other symptoms. I have just moved to San Diego from Houston to be closer to our family. I am trying to find a group with the same type diagnosis or a group that I can be involved with to talk with. I realize that this condition is very rare and I am looking to be a part of a group where I can discuss the issues related with living with the diagnosis. I am very glad to have found this website where I am hopeful that there are others like me who also are looking for a group to discuss their issues.
It all started with a fainting episode in 2011. I broke my foot when I fell and saw a doctor the next day. I had been feeling so tired and sweating so much as well as having had the hump come up on my back a few years prior, which my doctor in Indiana didn’t think was anything but a dowager’s hump that could have been genetic.
I then became ill in 2012 with pneumonia and was hospitalized several times due to relapses of pneumonia and uti’s that put me in the hospital. I was having so much pneumonia and bronchitis on top of this other issues and was not getting any diagnosis other than adrenal insufficiency. in 2014 I had been hospitalized every month with one infection or another. My husband and I finally determined we were going to relocate to Houston, TX to see the doctors there. I was already on 40mg of hydrocortisone daily and still felt bad. I was almost gone on two different visits to the ER in Indiana and found myself on the floor unable to get up on one instance. I was on the floor unable to pull myself up for 7 hours in the dead of winter until my husband came home. I had renal failure and was not really expected to make it but I did. After a winter of these problems we decided that cutting off the hump on my back, as discussed by one doctor, was not the issue and we made plans to relocate to Houston in 2014.
I had a great team of doctors there and was diagnoised with Congestive Heart Failure, glaucoma, high blood pressure, high cholesterol, GERD, fibromyalgia, connective tissue disease, osteoparsis, adrenal insufficiency, and cushing’s syndrome.
I was in the hosptial with one infection or another for 1.5 years due to pneumonia that was caused by aspiration into my lungs. I had surgery, Heiller Myotomy in July 2015 and from that point the pneumonia has stopped. Thank God.
Since that time, we relocated to California to be nearer to our daughter and her husband and I have not had to deal with the pneumonia but till deal with the adrenal insufficiency and the Cushing’s syndrome.
Maybe someone has been though some of these same issues and would like to talk about what they are experiencing. I am willing to share my experiences also.
This article was posted by long-time message board member Samsmom about her daughter Sam.
AIM senior Samantha Edgar doesn’t let health issues hold her down
SNOHOMISH — Samantha Edgar, 17, has faced limitations with serious health issues, including Addison’s disease and osteoporosis. But the AIM High School senior is overcoming them in amazing ways.
Question: Your school administrator says you come to school every day with a smile despite some serious health challenges.
Answer: I’ve had adrenal deficiency since I was 4 years old because my adrenal glands were infected with a lot of tumors. The guy who diagnosed me (Dr. Constantine Stratakis) I’m actually doing an internship with this summer at the National Institutes of Health. It’s pretty nerve-wracking. It will be fun.
Q: Wow. How did you end up with that?
A: (My mom and I) were talking about asking for an internship, and joking that he’d probably just say apply, like he normally does. … I asked “if I can maybe shadow you this summer and, um, hang out?” He was like, “Of course.” All the interns just stared at me. (Most of them are in medical degree programs) who’ve applied five times.
Q: What do you hope to get from it?
A: I’m hoping to understand my own thing a little bit more afterward, and then have opportunities after that stem from it. It’ll be interesting at least.
Q: Your mom is planning to rent an apartment and live out there with you.
A: I’m still her baby. … If anything, though, it’s the best place to have an issue.
Q: Your last life-threatening experience was when you were 10. You had the flu and were unable to keep down your medications, which you need to take three times a day. What other issues are you susceptible to?
A: If I am to break a bone or something I could go into what’s called adrenal crisis. (The body) goes into shock.
Q: And yet …
A: I do mounted archery, which is horseback archery. My mom is pretty much nervous every time I go down the course because I’m probably going around 30 (mph) and shooting an arrow at a target or five.
diagnosed with cushings 2004 after being miss diagnosed 12+ years.
Head a left adrenalectomy for a benign adrenal adnoma. Been in secondary addisons since.
My right adrenal never fully recovered it makes about 4.5 cortisol. I average 12-15mgs of cortef per day.
Work full time as a nurse anesthetist, one daughter in 4th yr of college, have a very supportive husband we met in 2004 but did not marry until July 2012. Bicycling is my passion and like to cross country ski.
Interested in being a support for anyone with cushings or addisons.
Would like to compare notes with any addisions on how they adjust their steriods. I am 56yrs old.
In 1976, I was (finally) diagnosed with Cushing’s disease and after the up the nose surgery, which was ineffective, I had bilateral adrenalectomy.
It all started in late 1974, when I started having lots of illnesses and was depressed. I was crying a lot and going back and forth to my doctor, who treated every illness and gave me anti-depressants.
Then the weight gain started, ( I was 185 at my highest, which was usually 115-120) actually I had been gaining weight, but by now it was rapid and uneven– only my trunk and face.
All through late ’74 and 1975, I was back and forth, even with a dx of pregnant, (which made evryone happy, as I was married Feb 1974. But the mental problems continued, I was under psychiatric care and had 2-3 in-patinet stays of about 2 weeks. Each time, after the observation and evaluation, I was discharged with no dx. I would also fall asleep at the strangest places and times, all very suddenly.
In March of of 1976, I had what was then called a “nervous breakdown,” so again I was hospitalized. THAT probably saved my life, as it was my psychiatrist who finally dx Cushing’s and decided on treatment. He later told me that I had him very confused, as each time he thought he had the DSM dx (he knew I was in the mh field), I would change and thus, he could not fit me in any DSM DX. Then, because of my appearence (moon face, foot-ball player shape, with skinny limbs, losing my hair and all the secondary dx (high blood pressure, insulin diabetes that could not be controlled– up, down, up down, losing hair, on my head but growing on my face and back), he said he remembered something from medical school.
He did a lot of research, ordered a lot of tests and VOILA– I had Cuhing’s disease. It was very rare and at that time, he said there were no more 300-400 (known) cases in medical history; also, I was the youngest dx at 26, because most cases were in those age at least 50.
I had the nose surgery, very new at the time, but it didn’t “work,” so I had to have my adrenal grand removed– they were 5x the normal size and producing 25x the normal amount of steroids. I had the surgery in Novemver 1976, which took from 7 am to 5 pm (I have the 2 long scars on my back). I did not know at the time that there was an 85% chance of surviving that surgery.
Post surgery, all but 3 of my fingernails fell off, my hair was in tight curls (previoulsy straight) and I had cystic acne on my face, neck and back. I started taking cortisone and florinef and was told I had to take it the rest of my like. I was under close dr care for about a year, and by April 1977, the weight was gone (I was back to 115) and all secondary symptoms were gone. I believe that the surgery was a real “cure” for my Cushing’s disease and after, it was/is maybe somewhat like diabetes, in that it is managed and controlled. There are some things that I have to watch carefully, like a comprommised immune system (increase the prednisone if infection seems likely) and some depression (never hospitalized again). I have had some adrenal crises, that landed me in the ER, maybe 5-6 over the years (how strange, no doctor ever told me or gave me a prescription for an injection for such occurences).
In 1990-1991, I had what ended up being appendicitis. After 4x in the ER, I vomited blood and collapsed. It turned out to be a (dead) grangrenous appendix, which should have been removed the first t ime. Supposedly, the prednisone that I take “masked” the symptoms and since my blood showed no infection, I was sent home from the ER each time. I spent 2 weeks in the hospital with 3 strong intravenous antibiotics to remove all the toxins in my body that almost killed me.
In 2000, I was dx with diabetes, which runs in my family, and at 64 years old, the problems I have now are severe allergies/sinus problems (no one believes that I am sick when this makes me sick) and I seem to always be hotter or much colder than anybody (which the doctor warned me about right after the major surgery).
Also, I started out with cortisone; in 1990, a new doctor in NYC gave me hydrocortisone and I gained 10-20 lbs. Another doctor quickly put me back on cortisone and said that the hydrocortisone was only for injections when I have adrenal crisis– it is quick actiing. The cortisone was 25 mg daily and around 1993-94, I started gaining weight. A new docotr in Chicago, switched it to prednisone 5mg., the equivalent of the 25 mg cortisone. He said the prednisone did not cause weight gain– he was right. I also take Florinef, now Fludrocortisone (the generic, Florinef is VERY expensive, as is the generic, but less). I started out with this at .1 mg once every other day and sometime in the 90s, the same dr who put me on prednisone, changed the Fl to one x daily.
Life was good! In fact, life was great! I was married to the love of my life. We had a beautiful little girl. My husband and I had both earned our graduate degrees. I earned my Doctorate in Clinical Psychology and was growing my clinical practice. I loved my work!
In October, 2006, my life was turned upside down when I gained 30 pounds in 30 days! I knew this was not normal at all. I sought answers but my doctor kept insisting that I wasn’t eating the right foods, that I wasn’t exercising hard enough, and finally that it was genetic. However, I was always a thin person, I ate pretty healthy foods, and I was pretty active. Red flags became even greater when my physician put me on prescription weight loss drugs and I STILL gained another 30 pounds. I knew my body and I knew something was wrong but I had no one to validate what was going on.
In January, 2010, to my surprise, I learned that I was miraculously pregnant with our second daughter. I was so sick during that pregnancy and, again, my doctors couldn’t figure out why. My OBGYN was very supportive, yet so concerned. Her solution was to put me on bed rest. I became so ill that she told me that “my only job was to sit still and wait to have a baby”. I did give birth to a healthy baby girl four weeks early. Little did I know, then, how much of a miracle she was.
During the latter part of my pregnancy, while flipping through channels on television, I came across a Cushing’s episode on the health TV show, “Mystery Diagnosis”.
I knew right away that this diagnosis fit everything I had been experiencing: years of weird and unexplained symptoms, gaining 150 pounds for no reason, an onset of diabetes, high blood pressure, and an overall sense of doom.
You see, my friends and family witnessed me go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as I tried for many years to get answers from professionals. As I continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; I continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching that Cushing’s episode of Mystery Diagnosis, I found my answer! Ultimately, I sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. I had brain surgery in Seattle on November 16th, 2011. I want to tell you how I found the people who helped save my life…
On June 9, 2011, I went to my first MAGIC conference. I had never heard of them but someone on one of the online support groups told me about it. At that time, I was working but was very, very sick. We suspected at that time that I had been sick for years! My local endocrinologist was far from a Cushing’s expert. After watching the Cushing’s episode of Mystery Diagnosis, I told the same endocrinologist who had misdiagnosed me for years that I had found my answer. He swore that there was “literally no possible way that I had Cushing’s Disease!” He stated that my “hump wasn’t big enough”, “my stretch marks were not purple enough” and that “Cushing’s patients do not have children!” I told him that I was NOT leaving his office until he started testing me. He finally caved in. To his surprise, I was getting abnormal labs back.
At that time, there was evidence of a pit tumor but it wasn’t showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.
So, back to the MAGIC convention; my husband and I went to this conference looking for answers. We were so confused and scared! Everyone, and I mean everyone, welcomed us with opened arms like we were family! There were brilliant presenters there, including an endocrinologist named Dr. William Ludlam. At that time, he was the director at the Seattle Pituitary Center in Seattle, WA. He is a true Cushing’s expert. Since then, he left in January, 2012 to have a significant impact toward the contribution of research of those impacted by Cushing’s Syndrome. His position was taken over by another brilliant endocrinologist, Dr. Frances Broyles.
I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don’t know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!
You see, Dr. Ludlam had given me his business card at the conference, which took place two weeks prior to the IPSS. I put it away for a while. But, something kept telling me to pull the card out and contact him. I am crying just thinking about it, Lord!
So, prior to my IPSS, I wrote Dr. Ludlam an e mail asking him some questions. At that time, he told me to send him ALL of my records including labs. I sent him 80 pages of records that day. He called me back stating that he concurred with all of the evidence that I definitely have Cushing’s Disease from a pituitary source. He asked me what I planned to do and I told him that I was having the IPSS procedure done in a few days at the University of Chicago. He told me once I got my results to contact him.
Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!
Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this…The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!
Two days later, Craig and I were on a plane to Seattle. I had never in my life been to Seattle, nor did I ever think I would go. We saw the man that God used to save my life, Dr. William Ludlam, the same man who we had met at the MAGIC conference for the first time one month prior! He put me on a combo of medications that would pull me out of crisis. Within one month, my blackouts had almost completely stopped! Unfortunately, we knew this was a temporary fix! He was treating me to carry me over to surgery. You see, his neurosurgeon, Dr. Marc Mayberg was just as amazing. He is one of the top neurosurgeons in the US! Statistically, he has one of the highest success rates!
The problem was that our insurance refused to pay for surgery with an expert outside of IL, stating that I could have surgery anywhere in IL! Most people don’t know that pituitary surgeries are very complicated and need the expertise of a “high volume center” which is where they do at least 50 of these surgeries per year. Dr. Mayberg has performed over 5,000 of these surgeries! By this time, we had learned that we need to fight for the best care! It was what would give me the best chance at life! We thought I would have to wait until January when our insurance would change, to see if I could get the surgery I so desperately needed! I was holding on by a thread!
We began appealing our insurance. At the time the MAGIC foundation had an insurance specialist who was allowed to help us fight our insurance. Her name is Melissa Callahan and she took it upon herself to fight for us as our patient advocate. It was a long and hard battle! But…we finally WON!!!! On November 16th, 2011, Dr. Marc Mayberg found that hidden tumor on the left side of my pituitary gland! He removed the tumor along with 50% of my pituitary gland.
Recovery was a difficult process. They say that it takes about one full year to recover after pituitary surgery for Cushing’s. I was grateful to be in remission, nonetheless. However, about one year after my brain surgery, the Cushing’s symptoms returned. After seven more months of testing that confirmed a recurrence of the Cushing’s, I was cleared for a more aggressive surgery. This time, I had both of my adrenal glands removed as a last resort. By then, we had learned that I had hyperplasia, which is an explosion of tumor cells in my pituitary. It only takes one active cell to cause Cushing’s. Therefore, I could have potentially had several more brain surgeries and the disease would have kept coming back over and over.
As a last resort, my adrenal glands were removed so that no matter how much these cells try to cause my adrenals to produce excessive amounts of cortisol; the glands are not there to receive the message. As a result, I am Adrenally Insufficient for life, which means that my body cannot produce the life sustaining hormone, cortisol, at all. I had my Bilateral Adrenalectomy by world renowned BLA surgeon, Dr. Manfred Chiang, in Wisconsin on August 21st, 2013. I traded Cushing’s Disease for Addison’s Disease, one of the hardest decisions I have ever had to make in my life. However, I knew that I would die with Cushing’s. Recovery from my last surgery was difficult and involved weaning down to a maintenance dose of steroid to replace my cortisol. Now, on a maintenance dose; I still have to take extra cortisol during times of physical or emotional stress to prevent my body from going into shock.
I promised a long time ago that I would pay it forward…give back because so much has been given to me. This is why I have committed my life to supporting the Cushing’s community. I post videos on YouTube as a way of increasing awareness. My channel can be found at http://www.YouTube.com/drnkarenthames
Karen has made 2 videos about her experiences with Cushing’s:
and
Doc Karen will be our guest in an interview on BlogTalk Radio Friday December 2 at 11:00 AM eastern. The Call-In number for questions or comments is (323) 642-1665 .
The archived interview will be available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you’re waiting, there are currently 90 other past interviews to listen to!
Today is the 38th anniversary of my pituitary surgery at NIH – November 3, 1987.
I can now affirm that I have lived more than half my life post-op. That’s pretty amazing when I was sure that I was going to die before I had my surgery. And didn’t care if I did.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented in my original bio here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 38 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last several years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I didn’t look forward to telling my endo! I have had a couple more injections. I was approved for a new three-time gel injection over 3 weeks.
I also developed an allergy to blackberries last October and had to take Prednisone – and I had to tell my endo that, too!
Cushing's Disease is a rare condition caused by excessive production of cortisol, a hormone essential for various bodily functions. It is a specific form of Cushing's Syndrome, where the overproduction of cortisol is due to a tumor in the pituitary gland. The condition affects 10 to 15 people per million each year, predominantly women between […]
For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn't live […]
Transsphenoidal surgery is the primary treatment for patients with Cushing disease (CD). This study assessed the surgical and endocrinologic outcomes of patients with CD following endoscopic pituitary surgery using strict biochemical criteria to guide surveillance in patients not achieving early remission.
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