hi everyone i was on the board about 15 years ago with my first taste of cushings disease, i had a reocurrance in 2008 and a second operation, and am now under investigation again
Voices From the Past: Michelle (tigs68), Pituitary Bio
May 9, 2026
Pituitary, Pituitary Surgery, Treatments Adrenal insufficiency, Conditions and Diseases, Cushing Disease, Cushing Syndrome, Health, Magnetic resonance imaging, recurrence, surgery 1 Comment
Dana (abnormalaties), Adrenal Bio
May 8, 2026
Adrenal Addison's disease, adrenal gland, Adrenal insufficiency, cancer, Conditions and Diseases, cortisol, cushing's syndrome, Health 3 Comments
im a 45 yr old female been feeling sick for 5-6 years. like i got flu all the time,real big and fat i am,aching wrists ,knees,SLEEPY always.anxiety ridden….. fatty deposits on collarbone.adrenal mass found in december,
was sent to surgeon and told if its a functioning tumor it mst come out-just got back from my supression test. results in a week.will be a long week…but i pray it can be fixed if its cushings or whatever it is.. God bless.
Renee (Renee), Pituitary Bio
May 8, 2026
Pituitary, Pituitary Surgery, pseudotumor cerebri, Rathke's Cleft Cyst, Treatments Adrenal insufficiency, bladder, Blood test, Buffalo hump, Cleft lip and palate, Conditions and Diseases, Cushing Syndrome, depression, Dexamethasone, Diamox, dilated aorta, Health, high cholesterol, hirsuitism, hydronephrosis, hypertension, immune suppression, irritability, Magnetic resonance imaging, moodiness, moonface, muscle weakness, pertussis, pituitary cyst, pseudotumor cerebri, Rathke's cleft cyst, Stretch marks, striae, surgery, weight 1 Comment
I am really not sure where to start! I have struggled with medical issues my entire life. I am 25 born with many anomalies–bladder, cleft lip/cleft palate, dilated aorta, hydronephrosis…the list really goes on and on. Thankfully, I have had great doctors and everything is under control until recently.
I had my first appointment with my new endocrinologist. She listened to my history that I highlighted for her and she actually took the time to *think* about me and all of my little medical issues. It was great to see her brain trying to piece things together. When she was doing my exam, she gently touched my shoulders and made a comment that my shoulders were holding a lot of weight. I said that I’ve noticed and that it makes me feel that I look like a football player. She told me that it isn’t that bad, but then asked me if I have stretch marks on my body. I told her that I do and that I’ve actually noticed that they are getting worse and deeper than usual. She looked at my belly and she said that she wants to get my checked for Cushings Syndrome.
She asked if I was on any steroids, and I am not, but I did have a pituitary cyst in 2008 that was surgically drained (specifically a Rathke’s Cleft Cyst). From what I’ve learned, whenever a doctor works near the pituitary there is a risk that hormones will be effected. This may be what is happening to me.
Last April 2012, I was also diagnosed with a pseudotumor cerebri. It is basically under control and I am on Diamox for it. These are my symptoms for why I really think I have cushings:
» Extreme weight gain
» Moodiness, irritability, or depression
» Muscle weakness– my leg muscles get tired very easily, even just walking a few blocks. It feels like I have shin splints, at times!
» Hypertension–possibly, but undetected because of I am on meds for other heart anomalies.
» Immune suppression– a possible reason why I got pertussis (whooping cough) during the end of 2012 even after being given the vaccine
» Hirsutism–embarassing, but true
» Hypercholesterolemia–to the point that I am on a medication for it
» stretch marks
» “moon face”–it isn’t too bad, but it is noticable.
» the storage of fat on my shoulders/back
Today I got my blood tested with the dexamethasone. I don’t know how long I have to wait for results, but I am really fighting urges to call my MD immediately. I found this board because I need support. I am nervous for what my future holds because I really don’t want to have ANOTHER brain surgery, but I think all that I can do it be positive and wait. Thanks for this forum!!
MaryO, Self Care
May 6, 2026
Adrenal Insufficiency, MaryO, Success Stories Adrenal insufficiency, bee sting kit, cushing's, emergency kit, Facebook, MaryO, salt, SaltStick, Sandra Boynton, secondary adrenal insufficiency, self care, stress, Tylenol Leave a comment
Info from MaryO. Luckily, AIU posted something on Facebook that gave me the perfect information to share today:
They also shared this information, which I already knew and put into good use just yesterday:
Feeling overwhelmed? You’re not alone.
Managing adrenal insufficiency during extreme stress can feel like carrying the weight of the world — but tiny steps rebuild your strength.
We created this simple guide to remind you:
• Rest before exhaustion.
• Stay hydrated and balance your electrolytes.
• Breathe deeply to calm your nervous system.
• Celebrate every small win.
• Listen to your body if you need to stress dose or inject.
You are healing, even now. You are not alone.
Learn more and find community at www.aiunited.org
As a person with secondary adrenal insufficiency, I find often find myself in a situation when I need to stress dose and balance the electrolytes. Many Cushies I know eat salt for this purpose but I don’t like salt. If I’m eating pretzels or something else with removeable salt – i take it off.
I don’t know if I found it by myself on amazon or someone recommended it but I always have a product called – TaDa! – SaltSticks nearby.
Writing this post today, I actually looked at the directions and found that I’m supposed to take 2 at a time. Oops! One does help somewhat. I’m sure that 2 will be even better.
To keep these and my hydrocortisone nearby, in addition to the actual bottles, I got some waterproof pill containers and keep them on my keychain. The wider ones hold 2 of the SaltSticks exactly.
The narrower ones have hydrocortisone and Tylenol. The hydrocortisone is in the red pill container.
All 3 are on one ring which goes onto my larger carabiner clip so that they can be easily moved if necessary.
In my backpack, I have an adrenal insufficiency emergency kit of sorts that I got off ebay. This also includes a bee sting kit. If you want to know why, check out this post. there is also information about my doctor, more hydrocortisone, benadryl, tylenol.
Both the keyring and the emergency kit have MedicAlert tags which include my member number so medics can find out just what I need, my DH number and my doctor’s number.
This info is also on my MedicAlert bracelet. I bought this one years ago to honor Natalie’s memory – this is the same style she wore.
In the backpack is also a standard emergency kit that anyone might have. (boring!)
More on MedicAlert bracelets:
Shared with permission from https://aiunited.org/medicalbracelets/
Advice from a Volunteer Firefighter with Adrenal Insufficiency
My name is Jeannie, and I have been diagnosed with Secondary AI since March of 2015. To make a long story short, I was diagnosed with a pituitary adenoma in Feb of 2015. It was apron 8mm x 10mm at the time wit was found. On April 25th, 2015 I was getting ready for work in the early morning hours.. I passed out in my bathroom and was immediately rushed to the hospital by my husband. They did a secondary MRI and found that the tumor had tripled in size to 23mm x almost 41mm. My Cortisol was also so low it was undetectable by the lab. I was taken by ambulance to Emory University hospital in Atlanta where the Neurosurgeon I had been in consult with was. I arrived there on Sunday and was in Surgery Wednesday Morning. The surgery took 9 hours and recovery was close to 6.
Prior to this all taking place I was a volunteer firefighter, and had worked EMS for almost 16 years. I have been in nearly every situation possible. I see so many people that have our condition asking about Medic Alert bracelets, What kind they should have, what it should say on it, etc. So I have put together a short list to help out a little bit. This is coming from both someone who has this extremely rare disease, and also from the Emergency Medical Side of me. Knowing what We as medics look for in the field, How quickly things move, what we ask or need to know, etc.
Please know that this IS NOT Professional Medical advice, But this is advice coming from someone who can shed some light on how to potentially save your life if you should ever be alone, or without anyone who knows your condition and you fall unconscious or are unable to the the responders what your condition is.
First off if you are looking for a medic alert bracelet or wondering if you should get one.
**The answer is yes, If you have been diagnosed ANY TYPE of adrenal insufficient or are on replacement medication.. YES. you need one.**
Here are some of those reasons and some pointers on what they should look like / what they should say.
#1– If you are found unconscious, and there are not bystanders around to tell emergency crews what is wrong with you, You will go longer without your steroids. If we see on your bracelet that you are steroid dependent, it dissolves the ENTIRE guessing game of why you’re unconscious.
#2– It should have on there your emergency contact and a GOOD telephone number. That way if nothing else. We can call them. NOT EVERY EMS AGENCY HAS ACCESS TO THE “CLOUD” BASED SYSTEMS THAT STORE YOUR INFO. Please be sure that if your emergency contacts number changes.. You change it on your bracelet. There is nothing worse than wasted time calling a number that doesn’t belong to the person we NEED to talk to.
#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.
#4– Most EMT’s and Paramedics Don’t Understand or know about Addisons or the treatment involved. If nothing else, carry a letter from your doctor explaining what is wrong with you, etc. It is very rare, and NOT covered in most Paramedic courses. So please, for those of you that put “ADRENAL INSUFFICIENT” on your bracelet and NOT “STEROID DEPENDENT” please keep in mind that you may end up with the Paramedic that just graduated, is nervous, and will mistake adrenal insufficiency for Adrenaline insufficiency.. and try to give you epinephrine. Please understand that I have seen this almost happen. It is something that is easily misunderstood in the heat of the moment.
#5– If you have an emergency injection that you carry with you all the time, on your person, or somewhere close. PUT ON THERE THAT YOU HAVE IT! MOST ems agencies have standing protocol that they can assist with emergency medications (Don’t jump in here if you are one of those states that doesn’t allow it.. I said most) That way if we find you down, and look at your bracelet, AND see that you have emergency meds with you… guess what now, not only is the guessing game over, You’re ALSO getting the RIGHT EMERGENCY MEDS, instead of us having to either give you what we carry, or you having to wait until you get to the ER and the ER doc has to go through your file and figure out that you need the medication that’s been in your pocketbook the ENTIRE TIME.If you are unsure if your state allows this, or if you Local EMS agency can do this. Contact their local medical control and ask. If they do, Please offer to give a small talk on what the disease is and how to use the emergency kit. Most will know once they see the acto-vial, but if they do not, Please educate them. Explain to them that it can be the only thing that could save your life.
Please take the time and make sure that you have correct information on your bracelet. Secondary or Primary, the treatment in an Emergency situation is the same. So there is NO need for you to spell out if you are secondary or primary. Both get the emergency injection in case of a crisis. Both get fluid bolus, heart and blood pressure monitoring. Nothing is different when it comes to an emergency situation. If you have any questions on the wording or what to get on it. Be sure you at least have an emergency contact, That you are steroid dependent, and where your emergency injection is located.
IF you know that your local EMS agency uses the “cloud” for stored emergency info, you can spend the money to get it. But I worked for service that covered a county with over 100 sq miles, and we didn’t use it. It is unreliable and takes too much time to log in to the system, try to read the small number on your band, type it in, etc. When you can simply put the information on the band itself.
The image below sure looks like it was made by Sandra Boynton but I got it from another page on Facebook.
These tips are good for anyone who needs a little self-care – not just people with adrenal insufficiency!
What do you do for self care? Please tell me in the comments.
Mary W (chloeblack101), Pituitary Bio
May 6, 2026
Adrenal Insufficiency, Pituitary, Pituitary Surgery, radiation, Treatments Adrenal insufficiency, Buffalo hump, Conditions and Diseases, cushing, cushing's syndrome, cyber knife, Endocrine Disorders, gamma knife, Health, hydrocortisone, hypertension, Megace, moonface, Pancreatitis, pituitary, radiation, striae, surgery Leave a comment
I was dianosed with Cushing’s Disease in 1998. At the time I looked like a textbook case. Moon face, buffalo hump, wasted extremities, straiea, hypertension, pancreatitis. Had resectioning of pituitary in 1998 but had reoccurance in 2002 at which time I had the cyber knife gamma radiation treatment.
Now no cushing’s but I have adrenal insufficiency from the treatment and have to take replacement hydrocortisone and I also take Megace. I have been sick lately and don’t have a very good Endo so I have many questions and I am seeking feedback from others who have post-Cushing’s complications. I want to continue to be active and productive and hope to learn from and also share with others.
Cynthia (K8sMom2002), Adrenal Bio
May 5, 2026
Adrenal adrenal gland, Adrenal insufficiency, blood, cancer, Conditions and Diseases, cortisol, cushing's syndrome, dex test, dexamethasone suppression test, glaucoma, Health, heart palpitations, intolerance to cold, migraines, orthostatic hypotension, Ovarian cancer, tachycardia, weight Leave a comment
The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia
I have just been diagnosed with glaucoma, and I possibly have subclinical Cushings … though I am small (4’10”, 99 pounds), I’ve realized that I have put on an average of a half-pound each month since July of 2012, after years of being fairly stable with my weight.
Also for years I’ve had heart palpitations, a life-long intolerance to cold, and orthostatic hypotension and tachycardia, as well as migraines. I had to push my gyn/onc to get a referral to a endocriniolgist — every doctor seems to think that a “benign” adenoma is an okay one that can be left alone.
Have done an adrenal insufficiency test and will be doing the dex test (two 8 am blood draws) this week.
Mary (TheGoat), Pituitary Bio
May 4, 2026
Adrenal Insufficiency, Adrenal Surgery, Diabetes, Pituitary, Treatments Adrenal insufficiency, anemia, bilateral adrenalectomy, BLA, Carcinoid, Conditions and Diseases, CSF leak, cushing's syndrome, diabetes, digestive, fatty liver disease, Health, Magnetic resonance imaging, Pituitary adenoma, transsphenoidal, Vitamin D Deficiency Leave a comment
I had 3 transphenoidal surgeries 1 month apart in 2003. I had a csf leak and when it was repaired the pituitary had become necrotic and I lost the whole gland.
They said that did not cure the cushings so I had a BLA in 2004.
I have had nothing but health problems since then. Diabetes, fatty liver disease, frequent adrenal insufficiency, severe anemia despite no periods, vitamin d deficiency, and other strange things.
They are now working me up for the neuroendocrine carcinoid tumor in the stomach or small bowel. It has been quite a road and I am not sure if I would do this all again if I could.
Janice B, Pituitary Bio
April 27, 2026
Adrenal Insufficiency, Pituitary, Video Adrenal insufficiency, cortisol, Cushing's disease, mental ward, pituitary surgery, Prednisone, pschiatrist, starch, video Leave a comment
I was married 38 years when I became sick in 2011, but the family doctor and my husband wouldn’t believe me. They thought I was lazy, fat and crazy when they shipped me off to a mental ward in a hospital. I knew I was physically sick with Cushing’s Disease, but I couldn’t convince the psychiatrist. I left my husband, got a new doctor and was diagnosed with Cushing’s Disease in 2012. I had successful surgery in April 2013 to remove the pituitary tumor. I had Adrenal Insufficiency and was put on 5mg of prednisone as my body would not produce its own cortisol.
On Sept 27th/2016, I went into an Adrenal Crisis in an airport in Germany (I live in Canada) was hospitalized one day in intensive care, two days of regular care then I flew back to Canada and have been struggling ever since with Cushing’s symptoms. I was on two IV’s continuously in Germany for three days. I know one was prednisone and don’t know what the other was. But I do believe those doctors saved my life. However, all my Cushing’s symptoms returned and from October 2nd/2016 to December/2016, I gained 26 pounds while eating very little and should have lost weight.
I found an MD who also practices integrative and complementary medicine. He has a master’s in nutritional biochemistry. He had me do a Live Blood Cell test. My blood cells were all stuck together in a long chain and not free-floating like the way they should be. Based on this, the doctor said I had bad bacteria, fungus, and inflammation. He also said this is indicative of extreme fatigue. He said it was the starch in my body that created this problem. In April 2017, he put me on a low starch diet, and by July my adrenal awakened and was producing its own cortisol. I was no longer Adrenal Insufficient and taken off prednisone.
By Sept/2017 I was able to walk 13 km at the Toronto Zoo, could dance and golf. Most of my Cushing’s symptoms had disappeared. I got my life back.
I ate butternut squash for months, as it was on my list of approved foods, and became sick with Cushing’s symptoms again and got a burning in the vagina. I didn’t realize Butternut squash is starchy. My next blood work showed elevated White Blood Count, , Neutrophils, and Monocytes. All of them indicative of bad bacteria, fungus and inflammation. Click here for the bloodwork report.
There was no source found for the infection. I was put on Microbin and a second level of antibiotics which did nothing. Then, I was put on cipro flax which cleared up the infection. After six months, and strict adherence to my no starch diet, I started to recover from Cushing’s symptoms giving me a better quality of life. I also lost weight.
For three days in a row, I ate homemade tomato sauce. I got a burning in the vagina and my Cushing’s symptoms returned. ( Click here for the bloodwork report. ). Two internet sites said that tomato is non-starchy, but MedicalHealth.com says tomato is a starch. My friend, who is diabetic said if she is on a low-carb diet, she can’t eat tomatoes. My next bloodwork gave the same results as above. Over five months, while maintaining a no starch diet, my Cushing’s symptoms lessened giving me more energy and I lost weight.
After eating a handful of cashews for 4 days in a row I woke up with a burning in the vagina and my Cushing’s symptoms returned. This has now become my indication that I have eaten something starchy so I figure out what it was. I had bloodwork done the next day. This is the result. ( Click here for the bloodwork report. ). Cashews are starchy. Again the same elevated bloodwork results as above. Antibiotics cleared up the infection. After five or six months on a strict no starch diet, the Cushing’s symptoms lessened. My energy and strength returned and I lost weight.
Looking back at my old bloodwork from 2011 when I was in the psychiatric ward, it showed the same elevated results except that the WBC went up as high as 23 and the hospital mentioned that there was no source found for the infection. Another time, in 2011, I went to the ER, the records showed the same: elevated WBC with no source of infection.
To prevent this from happening again, I found a way to test for starch in foods using iodine. See how under DIET section.
Unfortunately, I had too much white wine, what can I say I’m only human and ate barbecue sauce on 5 May/2019. Here are my results. I am back to having Cushing’s symptoms. But after six months of being back on the no starch diet, I have recovered from the Cushing’s symptoms.
I ate corn-fed steak and got a burning in the vagina and became sick with Cushing’s symptoms again. Steak is a non-starchy food. But the cow ate corn, which is starchy, and I ate the cow so, I got sick again with Cushing’s symptoms. Unfortunately, I didn’t have the bloodwork done at that time to show white blood count numbers.
This cannot be a coincidence. There is a definite pattern that can’t be ignored. Each time I unwittingly ate starchy food, I would go to the doctor and ask for bloodwork to be done.
I had a cyst on my lower eyelashes surgically removed. This cyst formed because of repeated infections. The cream the surgeon gave me Tobradex has only 2 ingredients: Tobramycin and dexamethasone. I learned Dexamethasone reduces inflammation by stopping cells from releasing chemicals that normally help produce immune and allergic responses. The Dex stops the allergic reaction I’m having from the starch and by doing so lowers my cortisol. OMG! This is why when I stop eating starchy foods for six months, (because it takes that long for the starch to break down and get out of my system) I recreate what the Dex is doing and my Cushing’s symptoms lessen and my cortisol is lower. This is why my cortisol levels became normal seven months after eating the corn-fed beef because I didn’t have any further setbacks from eating starch. I was starting to recover. All my bloodwork confirms starchy foods create inflammation. My cortisol suppresses when given the Dex Suppression Test. For me, I was given one dex pill which did nothing and my cortisol did not suppress. Then the doctor gave me six dex pills and the cortisol did suppress. After this test, I had more energy and didn’t feel like my legs would collapse.
An interesting note is that some endos have Cushies taking ketoconazole, which is used to treat skin infections and is an antifungal, to help lessen the symptoms. But Cushies have found it works for only 2 years then becomes ineffective. So the connection here is that Cushies have infection and fungus, which my bloodwork corroborates. We can lessen our symptoms when we get rid of the source of the infection. Therefore, if I get rid of the starch in my body, will I get rid of my Cushing’s symptoms and the infection? This is the question I am hoping my fellow warrior Cushies will answer by trying my diet.
Let’s RECLAIM our lives together.
Janice’s website is at https://www.janicebarrett.ca/
GoldenOldie – MaryO/COVID Vaccine 2
March 20, 2026
Adrenal Insufficiency, Cancer, Golden Oldies, Growth Hormone Deficiency, MaryO, Other Diagnosis, Pituitary, Success Stories, Update Adrenal insufficiency, brain fog, chills, cold, congested, Cortef, cortisone, COVID-19, Cushing's disease, CVS, dizzy, Domino's, dreams, Growth Hormone Deficiency, headache, hydrocortisone, Johnson and Johnson, kidney, Kidney cancer, MaryO, Moderna, panhypopituitary, salad, steroid dependant, stress dose, thirsty, Tylenol, urinary incontinence, Vaccine, water 1 Comment
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 was March 15, 2021. This time I was smart and updosed on my Cortef (hydrocortisone) right after the shot. My main side effects this time were chills, extreme thirst, fatigue…and a craving for salad(!)
Earlier in March, CVS sent out an email with a few questions to answer before confirming my March 15 appointment. On March 14, they sent me a text and when I clicked on the link, it said I had answered all the questions already. YAY
I got this information again from CVS:
|
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 • Review the patient fact sheet about the specific vaccine you are receiving |
|
What to do if you feel sick or have COVID-19 symptoms: •Contact your health care provider immediately •If your provider recommends it, get tested for COVID-19 • Cancel your appointment •Don’t come to the pharmacy •Schedule a new appointment when you’re well |
|
After your vaccine: •Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects. •If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs •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. |
Monday, March 15, 2021: When I got to CVS, I found that everything was very well run like before.
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.
This time I wasn’t met by anyone at door but I knew from before 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 2 people ahead of me that I could see. It went very fast. I was in the little partitioned off area within less than 10 minutes.
The nurse asked if left arm was ok to use.
The shot was not quite as fast – I felt it a little but I am used to giving myself daily injections so this was no biggie..
The nurse said if I get a headache, take Tylenol only. She also said to stay hydrated.
I sat in the waiting area for 15 minutes to be sure there were no problems There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.
This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).
Around 7 pm i noticed I had what I used to call a “lightning bolt headache”. There is pain in one spot of my head and it moves quickly down, through my brain and out. I used to get these long ago and I didn’t even know they were a thing until I just looked them andy they are called “Thunderclap Headaches”:
Severe headaches that appear suddenly like a lightning bolt are a cause for concern. This isn’t a sharp pain that goes away as suddenly as it began, but a pain that comes on like a light switch or feels as if someone has hit you in the head with a hammer.
Who knew – I thought I’d made them up. I hope this was the only one.
I could not believe how thirsty I was for the first couple days. My mouth felt like a desert so I drank lots of ice water which meant I needed to run to the bathroom a lot. Sometimes, I didn’t quite make it.
I was so tired, I skipped my growth hormone injection.
About 10 pm I started being very cold. I don’t know if that’s a symptom but I noted that on February 17, also.
My arm seems like it is more sore than last time.
About 3 am, I got up needing to get a drink of water and I was still so cold. I was under 3 blankets, wearing a hoodie and a very warm knit cap. I didn’t have the death dreams like last time but some that were work-related and all jumbled up. This has to get done before that can, but then, this other thing happens, type thing. I just got up, got a little hydrated and checked my emails.
As soon as I typed this sentence, I put my mittens back on.
Tuesday, March 16, 2021: My arm was sorer than Monday and I was still feeling cold, sleeping off and on. Still very thirsty.
I skipped my growth hormone injection again.
I had trouble sleeping, especially if I tried to roll over.
Wednesday, March 17, 2021: We didn’t go to water exercise. I planned that this time, based on my reaction to the first shot.
I had a little headache, dizzy, congested, very tired, lots of brain fog, thirsty. I slept more until about 1 pm and I cancelled piano lessons for the day.
After cancelling lessons, I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.
At that point, I realized I hadn’t eaten for 2 days or had any coffee!.
For reasons that are very strange to me, I started craving tossed salad, specifically one from a certain local restaurant. I have never in my life craved salad.
I had some dinner (I was surprised that I could eat any) at 9:25 and did my growth hormone injection.
I went to bed at 11 pm. Tossed and turned all night.
Thursday, March 18, 2021: I’m a little more tired than usual but ok. I spent time napping and working alternated through the day. My boss called and he’d just had his Johnson and Johnson shot on Tuesday. The call was pretty funny because we both were brain foggy and trying to think of words. His vaccine is the one-dose type – he was glad to get it but found it weird that he could actually feel the medicine going in. That sounds to me more like it was injected into a vein than a muscle.
My DH went out to Domino’s and got some dinner – and finally, I got that salad!
Friday, March 19, 2021: Just the normal tiredness. Hooray! We went back to water exercise. I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.
Saturday, March 20, 2021: DH gets his second shot!
In 14 days, I’ll be considered to be vaccinated. April 8, we will go visit our new grandson in NYC without quarantining or testing.
Info below from https://medshadow.org/covid19-vaccine-side-effects/ I’ve had the bold ones so far after the second injection.
Moderna
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.
This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/
A really good article – Coronavirus Life: What To Expect When You Get Vaccinated Against COVID-19
Brenda, Steroid-Induced Cushing’s
March 1, 2026
Adrenal Insufficiency, Steroid-Induced ACTH, Adrenal insufficiency, cortisol, Dr. Lynnette K. Nieman, edema, fever, Interstitial Cystitis, Mayo Clinic, night sweats, NIH, pain, seizures, steroids, UFC Leave a comment
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.
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
Recent Comments