Today is the 34th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 34 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’ve been approved for a new gel injection but haven’t started that yet – that would be a three-time 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!
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
•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 problemsThere 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.
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.
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.
Today is the 32nd anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 31 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
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 couple 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 also developed an allergy to blackberries in October and had to take Prednisone – and I had to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
Today is the 31st anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 31 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
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 couple 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’m not looking forward to telling my endo!
I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
Today is the 30th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 30 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two. Even when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.
However, this year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During that surgery, 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 couple 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.
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
My name is Lynn M. I am a 39 year old with adrenal Cushing’s. My left adrenal gland was removed on Nov 29, 2000, in Portland Or. 24 hours after surgery, I went into adrenal crisis and was in a crisis for three days due to sodium and potassium crash.
My tumor had been present for about 5 years but it took three years of different doctors to diagnose me with Cushing’s. Now one year post op I have lost 45 lbs on weight watchers but still taking 35mg of cortef and 50 mg potassium and diabetic. My other glands have not started to function yet now I am at home recovering from ankle surgery scared to death of infection or not healing because of the steroids…Has anyone else had surgery while still on high doses of cortef?
Today is the 29th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 29 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two. Even though I’m now 10 years NED (no evidence of disease) from cancer, I still can’t go back on the GH.
During that surgery, 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 year, I’ve developed ongoing knee issues. Because of my Cortef use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on another blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.
I’m thankful for Dr. Harvey Cushing and all the work he did. Otherwise, I might be the fat lady in Ringling Brothers now.
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.
Hello and Good Morning!! First i want to say that this is a great website..very informative and hopefully I can find some help here.
I was diagnosed with autoimmune adrenal insuffiency back in 2009 and put on 30mg of Cortef for the rest of my life. He said my cortisol levels were below normal of -1. Then in spring of 2010 this endocrinologist raised it to 60 mg cause i was having dizzy spells. I got suspious of this high dosage and told my primary dr and he sent me to an university hosp. and another endo. The new endo said that the cortiso levels were normal and that the first dr was wrong. Now since 2010 the new dr has been trying to wean me off the steroids with no success. I am now on only 15 mg a day.
Here are my lab results from the first dr. Hopefully someone here can tell me if they think they are normal or not.
This is a acth stim test:: july 2009
Cortisol am 10:45= 11.6
cortisol am 11:15= 25.0
cortisol am 11:45= 9.8
cortisol am 12:15= 26.9
acth 10:15 8
acth 10:45 6
acth 11:15 35
acth 11:45 28
hgh 10:15 15.6
hgh 10:45 4.9
hgh 11;15 3.2
hgh 11;45 2.3
hgh 12;15 4.9
somatomedin c was 117.
fsh 99.6
tsh 1.34
t4 free 1.10
As I said the second dr has been trying to wean me off the steroids. i did have a 3.9 andenoma on the right adrenal gland removed in Sept 2010 and waiting for the left adrenal gland to kick in which it has not according to the last acth test done last December 2011 with a cortisol level of .5 which is suboptimal i was told. This dr. also said if I went off the steroids now I would die!!!!!!!!!!!!!!!!!!!. I dont know who to beleive.
I am extremely skinny and bony and eat around 3000 to 4000 calories a day. I was referred to Mary O a year ago thru Power-Surge forums and wrote her and never heard a reply. I lost 30 pounds without trying and went froma size 12 to a size 4, bmi is 15. tried to sue the first dr but was told it was over the statues of limitations and tried for an extension of this but no lawyer will touch it cause they said the judges would throw it out of court. My arms and legs are like twigs and bones are sticking out…trying to hang on. Please someone help. Thank you
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