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MaryO/COVID Vaccine 2

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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

Moxie G, MoxieGarrett, Pituitary Bio

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August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

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Mary Lou (MarLo), Undiagnosed Bio

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I am the mother of a 19 girl who is currently being evaluated for Cushing’s Syndrome/Disease.  My daughter is in her first year of college and over the past eighteen months, she has gained close to 50 pounds.  I have watched her struggle and we have even attended two military-style bootcamps for weight loss.

Despite eating healthy, during that five weeks, she gained 2 pounds.  Her facial features are so distorted from her moonface appearance that she does not even look like herself.  She has a Buffalo Hump and purple stretch marks on her rotund abdomen.  She has almost no energy and when not in class, she is sleeping in her dorm.  She has a brown stripe of skin in  the crease of her neck which prompted her roommate to ask her if she had worn a necklace with copper in it.  Her vision is poor and her periods are now very irregular.  She has excessive thirst and urination.

About a year ago, she had her wisdom teeth extracted and ended up with a life-threatening infection which included a second surgery emergency surgery and she was placed on a ventilator in ICU for three days, due to the possibility of the infection (swelling) occluding her trachea.  The doctors were so perplex how a healthy girl could have such a poor outcome from this surgery.

I looked up some of these symptoms and it seemed rather clear what she likely had.  I took her to an internist and expressed my concern about Cushing’s when she was home for Christmas break.  The physician ordered blood tests, including a CBC and metabolic panel, thyroid panel, and prolactin.  She also ordered a 24 hour urine for Cortisol.  Her CBC was normal as was the prolactin and thyroid.  Her liver enzymes were elevated about three times normal.  She then followed up with a Hepatits panel and an abdominal ultrasound, both of which were normal.  The 24 hour urine Cortisol was elevated and we are now waiting on a referral to an endocrinologist.

My daughter’s university is about 350 miles from our home, therefore I requested the endocrinologist be in her college town.  I plan on going there for her appointments and my husband and I have discussed moving there if necessary.  She has a very kind roommate who is dependable and helpful.  I still do not like her being so far away, knowing that she likely has a very serious condition.  My daughter’s spirits remain high and I think she is looking forward to beginning treatment, whatever it may be, and feeling better.  I know that the weight and the fatigue are the most troublesome for her.  I appreciate this site which has allowed me to express my concerns to so many who have been there.  God bless you all!

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Britney (PandaBearHobbit), Undiagnosed BIo

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I’m a 25 year old who’s in the middle of being tested for Cushing’s.

I have very high anxiety, hirsutism, fatigue, muscle weakness, can’t lose weight, acne, irregular periods, very high testosterone (163, normal is below 79 for women), always thirsty & pee often, ect.  My doctor referred me to an endocrinologist, and I was diagnosed with PCOS.  My cortisol levels were never tested.  I was put on birth control & metformin and the doctors told me that would help with everything.

After being on these medications for two years and seeing little to no improvement I started to do my own research.  I went to my endocrinologist and brought up the possibility of Cushing’s.  She assured me that it is too rare and I am fine.  I would’ve just taken her word for it, because I figured she knew what she was talking about, but my wonderful husband pushed for us to go ahead and do the tests.  I’m SO glad that he did.  All of the many, many tests have come back abnormal.  I’ve never had so many blood, urine, & saliva tests in my life!  After months of testing, my doctor said that Cushing’s is looking more and more likely.

I struggle immensly with weight loss.  My mother is a personal trainer and has always been in amazing shape.  She & the rest of my family told me I wasn’t doing enough to lose weight.  At one point I was working out 4 hrs EVERY DAY at the gym in addition to having a very physically demanding job.  I was able to lose a couple pounds, but that was it.  I eat healthy, and I’m not just saying that… I really do!  haha!  I’m a vegetarian, eat loads of fresh fruit & veggies, & try to keep my caloric intake to about 1500 calories a day!  I recently found information that a lot of exercising can actually raise my cortisol levels, which are already high.  So, I’ve taken my workouts down to brisk walking for 30-45 min.  Which, after years of intense working out, is weird for me.  I have never been able to lose weight on my belly and face.

I really struggle with anxiety & Irritability, and I hate it.  I get anxious about everything and it drives me crazy.  I compete in dog agility & get so anxious before & after I go into the ring that my pulse is over 180 & I shake (Just while I’m standing there!).  I love the sport so much, though, that I’d never give it up!  My dogs are my life!  I want to be able to compete & be able to enjoy it more, without all the intense anxiety!  I lack emotional control at times, and it tears me up.  I am a very loving person, and hate putting my loved ones through that.  When I lose my temper, I can’t control myself.  Once I come down from it, I feel aweful & can’t believe the things I said or did.  I feel like a crazy person!

I often have mental fogginess & insomnia as well.  Trying to focus on something is difficult, which made college a real struggle.  It’s not rare for me to go through patterns of insomnia, where I can only sleep a few hours a night.

Hoping to get officially diagnosed soon, so I can move forward with treatment.  I’m so eager to get all this figured out and feel “normal” again!

~~~

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