Post-Op Pituitary COVID Injection 1

 

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 got a link from a friend when CVS opened up clinics in my state – https://www.cvs.com/vaccine/intake/store/covid-screener/covid-qns

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

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.

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 problems  There 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!


Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the first 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/

$$$ Attention Cushing’s Patients ~ Patient Advisory Board $$$

Cushing’s Syndrome Patient Advisory Board: Patient Qualifier

Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.

Q1: Are you a U.S. Citizen and at least 18-years or older?

Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?

Q3: Did your doctor find a tumor on your Pituitary Gland?

Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:

  • ketoconazole
  • ISTURISA® (osilodrostat)
  • KORLYM® (mifepristone)
  • SIGNIFOR® (pasireotide), OR SIGNIFOR® -LAR (pasireotide).

Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≥3-months.

If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.

📞 Webinar: COVID-19 Vaccines for Endocrine Patient

 

Dr. Theodore Friedman will host a webinar on COVID-19 Vaccines for Endocrine Patients

Dr. Friedman will discuss topics including:

  • How do the vaccines work?
  • What did the New England Journal of Medicine article say about the Pfizer vaccine?
  • What are the different vaccine options?
  • What are the side effects?
  • Who should and shouldn’t get a vaccine?
  • What about Dr. Friedman’s vaccine studies?

Sunday • December 27 • 6 PM PST
Click here on start your meeting or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m5085619c25d8a2417d9316b56fe7830b

OR
Join by phone: (855) 797-9485

      Meeting Number (Access Code): 177 542 2496 Your phone/computer will be muted on entry.
Slides will be available on the day of the talk here 
There will be plenty of time for questions using the chat button. Meeting Password: pcos
For more information, email us at mail@goodhormonehealth.com

💉 Helpful Doctors: California

Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.

Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.

He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

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💉 Dr. Friedman: COVID-19 November 2020 update

 

Update November 22, 2020

I have not updated my patients on the COVID-19 pandemic since March. Since the last update and as of today’s date, 12.2 million Americans have been infected with COVID-19 and 256,000 Americans have died. Several of Dr. Friedman’s patients have been infected with COVID-19. Many businesses have closed and there have been major economic loses. The response to the pandemic has unfortunately been politicized and I say unfortunately because the virus doesn’t distinguish based on victim’s political party. Please see Dr. Friedman’s Letter in the Los Angeles Jewish Journal https://jewishjournal.com/letters_to_the_editor/316110/letters-lockdown-vs-no-lockdown/.

Dr. Friedman completely supports efforts to limit the spread of the virus, including wearing masks, social distancing, handwashing and staying at home. Listening to government officials including the CDC is crucial. Dr. Friedman agrees with data showing gatherings are much safer outside and encourages his patients to err on the side of safety and caution. Dr. Friedman is spearheading efforts at Charles R. Drew University to be a site for a vaccine study and after some delays, it looks like his University will be a site for the Sanofi vaccine in December 2020. Dr. Friedman is very excited about the promising results from the Moderna and Pfizer trials and thinks vaccines along with mask-wearing and social distancing will curtail the pandemic, hopefully in the latter half of 2021. He does think that COVID-19 will be with us for a long time. Dr. Friedman anticipates that changes due to COVID-19, including telemedicine and working from home will remain with us after the pandemic subsides.

As mentioned in the March update, patients with endocrine problems such as Cushing’s syndrome, Addison’s Disease, hypopituitarism and diabetes have slightly impaired immune systems, making them potentially susceptible for a more severe infection by COVID-19. He would recommend those patients to be especially vigilant about mask-wearing/social distancing and to get a vaccine when it comes out.

He advises his patients the following:

  • Wear masks, social distancing, handwashing and staying at home as much as possible
  • Use delivery services for groceries, food and medications.
  • Wash hands frequently for 20 seconds and/or use hand sanitizer several times a day
  • Avoid air travel, public gatherings and other public places as guided by local officials
  • Quarantine if sick or exposed.
  • Labcorp and Quest both introduced testing for COVID-19 using nasal swabs. Several other laboratories are also performing tests. Dr. Friedman recommends PCR testing and not rapid antigen testing. For those with symptoms of Coronavirus, he recommends seeing your primary care doctor for testing. Dr. Friedman is unable to provide requisitions or swabs for this testing that should be done by their primary doctor.
  • While Dr. Friedman was initially enthusiastic about antibody testing, he is concerned about the quality of the tests and no longer recommends it.
  • Labcorp and Quest are both still open and Quest has a new Peace of Mind program for lab services not related to COVID-19 and for patients who are 60 years of age or older, or have other conditions that put them at greater risk for COVID-19, in which patients can come to their nearby Quest location during the first hour of each day for VIP care.
  • Dr. Friedman encourages people to get their hormone testing done and make their followup appointments.
  • Many patients have requested extra supply of their medications. However, most insurances do not allow this and carefully monitor medication use. Dr. Friedman recommends patients to use a mail-order pharmacy and sign up for auto-refills so that they get a consistent supply of their medications.
  • Except for patients sick with COVID-19, patients should not up-dose hydrocortisone
  • Dr. Friedman has restarted in person visits on the last Tuesday of each month and continues to see patients via telemedicine on the other Tuesday nights. Please visit goodhormonehealth.com for more information or to schedule an appointment.
  • Dr. Friedman’s staff will still be doing in person growth hormone stimulation tests on Tuesday night in an isolated and sanitized clinic setting.
  • Dr. Friedman especially encourages patients to eat healthy and exercise (especially being outside) including walking, hiking, biking, aerobic videos yoga or pilates at home, during this stressful period.
  • Dr. Friedman encourages patients to get their flu vaccine and the COVID-19 vaccine when available.
  • Everyone should pray that the pandemic ends soon.

Dr. Friedman wishes everyone to stay healthy

📞 Pituitary Support Meeting Saturday November 14, 2020

From group leader Sharmyn McGraw: Hi All, I hope you can join us on Zoom this Saturday, Nov. 14, 2020 starting at 9:00 a.m. (PST). For those that can’t make it, I will record the meeting and post it later on our Facebook page. I look forward to seeing you!

📞 Cushing’s Disease Study

We have an opportunity for you to take part in a Cushing’s Disease study (IPS_4636) for Patients. Our project number for this study is IPS_4636.

Project Details:

  • Web- Camera Interview
  • There is a homework component
  • Interview is 75-minutes long
  • 125 Reward + 100 homework

Things to Note:

  • Patient study only, Caregivers please pass the link along
  • Unique links, please do not pass along for 2nd use
  • One Participant per household
  • Want to share this opportunity? Let us know and we can provide a new link
  • Preliminary questions are Mobile Friendly!
  • Save this email to reference if you have any questions about the study!
  • If you have any problems, email pm3@rarepatientvoice.com and reference the project number.  If you hit reply, you will get an auto do-not-reply email.

If you are interested in this study, please click the link below to answer a few questions to see if you qualify.

Study Link: Link

Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.

❓Can You Help?

Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck.

After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.

I have extra fat in my sternal notch as well, looking at these pictures do I have a moon face, etc.

I’m waiting for the results of my 24 hour urine test.

Thought I would ask to see what you all thought. Thanks for your help.

This potential Cushie has posted several photos here.

Please respond here, on the message boards, or in the original post.

Thanks!

📰 WP Thyroid, Nature-Throid and NP Thyroid recall-October 2020 update

Dr. Friedman wants to update his patients about natural desiccated thyroid (NDT) recalls based on new information from the FDA. Dr. Friedman prescribes various thyroid hormone preparations to his patients with hypothyroidism. This includes natural desiccated thyroid (NDT) of which two preparations are WP Thyroid and Nature-Throid, both made by RLC Labs. On August 25, 2020, RLC Labs announced a voluntary, consumer-level recall of all lots of Nature-Throid and WP Thyroid tablets because some lots contain less than the required 90% of the active ingredient as determined by the FDA. The RLC spokesperson said to Dr. Friedman that one lot of WP Thyroid and 5 lots of Nature-Throid contained between 87% and 90% of the labeled amount of levothyroxine (T4) or liothyronine (T3). Recently the FDA announced which lots are recalled that are listed below. According to the recall, if a patient receives a sub-potent tablet, hypothyroid symptoms may not be controlled. To date, there have been no reports of adverse events related to this recall. Patients who have had an adverse event should contact RLC Labs. The lot numbers are listed on the bottles of Nature-Throid and WP Thyroid.

With this information about which lots are recalled, Dr. Friedman is only recommended those taking the effective lots to discontinue them. Currently no lots of Nature-Throid and WP Thyroid tablets are commercially available, so a replacement with the same product is not an option. It is unknown how long it will be before Nature-Throid and WP Thyroid become commercially available.

In September 2020, the FDA also announced that two lots (one of 15 mg and one of 120 mg) (see table) of NP Thyroid made by Acella Pharmaceuticals were also recalled due to reduced potency between 87% and 90% of the labeled amount of levothyroxine (T4) or liothyronine (T3). Other lots are currently available. The lot numbers are not listed on the Acella product bottles, but the expiration dates are. If patient has one of the products with the expiration date listed, they can ask their pharmacy for the lot number.

Dr. Friedman has several comments about these recalls. Dr. Friedman sees them as unfortunate, but still believes NDT is a good option for patients with hypothyroidism. The “subpotent” Nature-Throid, WP Thyroid and NP Thyroid pills are only slightly less potent than stated in that only the effective lots are between 87% and 90% of the T4 and T3 levels. For most patients, they will not have symptoms from these subpotent pills and if they are taking a lot that is subpotent, the dose can be adjusted based on laboratory levels at your next appointment with Dr. Friedman.

According to Dr. Friedman, patients taking Nature-Throid and WP Thyroid with the subpotent lots have three options: 1) they can continue taking Nature-Throid and WP Thyroid knowing they may have a subpotent lot and knowing that they may not be able to get a refill at least temporarily. 2) patients can be switched to Armour thyroid, NP thyroid or have a compounding pharmacy compound the equivalent dose using USP grade porcine powder. Please let Dr. Friedman’s office know if you would like to go on a different desiccated thyroid product (and which one) and what pharmacy you would like to use, 3) Dr. Friedman has a small supply of desiccated thyroid with no recalled lots that is available at his clinic for those in Los Angeles on the last Tuesday night of each month. He will not be able to mail desiccated thyroid. Please contact his office about this option. Patients with a subpotent lot of NP thyroid can have their pharmacy switch them to an unaffected lot at no charge.

Patients do not need to contact Dr. Friedman, but if you have any questions or need to schedule an appointment with Dr. Friedman, please email us at mail@goodhormonehealth.com or schedule an appointment on his website at http://www.goodhormonehealth.com.

❣️The Message Boards Turn 20 Today! ❣️

 

 

Today  is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)

As of today, we have 73,024 members who have made countless posts.

Find the message boards here: http://cushings.invisionzone.com/