🏞 Rebuilding the MemberMap

Slowly but surely, we’re rebuilding the Cushing’s Member Map. The location where we hosted it previously started charging huge amounts of money, so it’s being moved here.

Add your information (or your doctor’s) at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ or below:

 

 

💉 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! âŁď¸

 

 

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/

 

📞 Webinar: Recurrent Pituitary Adenomas – What are the options?

 

Presented by

Dr. Magge, Assistant Professor of Neurology at Weill Cornell Medical College and an Assistant Attending Neurologist at New York-Presbyterian Hospital.

Dr. Ranakrishna, Chief of Neurological Surgery at NewYork-Presbyterian Brooklyn Methodist Hospital, Associate Professor of Neurological Surgery at Avina and Willis Murphy at Weill Cornell Medicine

Click here to attend.

Date: Tuesday, October 13, 2020

Time: 10:00 AM Eastern Daylight Time

Learning objectives:

–          the basic characteristics of the different types of pituitary adenomas

–          the potential predictors of recurrence and aggressiveness in pituitary adenomas

–          the surgical and radiotherapy options for recurrent pituitary adenomas

–          the potential medical interventions, including chemotherapy, for recurrent pituitary adenomas

💉 CLINICAL TRIALS | Awareness Project

Health Condition: All Conditions

Demographics: Ages 18+, United States Resident

Special Request(s): Everyone who has taken part in a clinical trial is asked to share. We are interested in learning why you decided to take part in a clinical trial and how your experience went.

Honoraria: Some respondents may be asked to participate in a clinical trial awareness network where there are paid opportunities to tell their stories.

 Apply to learn more.

📞 Webinar: Expect more from pituitary surgery: difference-makers for post-operative outcomes

 Presented by

Ahmad Sedaghat, MD, PhD – Associate Professor and Director of the Division of Rhinology, Allergy and Anterior Skull Base Surgery in the Department of Otolaryngology – Head and Neck Surgery at the University of Cincinnati College of Medicine and UC Health.

Norberto Andaluz, MD, MBA, FACS – Professor of Neurosurgery and Otolaryngology/Head and Neck Surgery – Director, Division of Skull Base Surgery University of Cincinnati College of Medicine and University of Cincinnati Gardner Neuroscience Institute – UC Health

 

Click here to attend

Date: Wednesday, Sept 23, 2020

Time: 3:00 PM  Eastern Daylight Time

Learning objectives:

1.  To understand the surgical steps of endoscopic pituitary surgery
2.  To understand how the surgical steps of endoscopic pituitary surgery translate to post-operative outcomes
3.  To understand surgical factors that can modify post-operative outcomes after endoscopic pituitary surgery
4.  To understand post-operative care that can modify post-operative outcomes after endoscopic pituitary surgery

📰 WP Thyroid and Nature-Throid recall-August 2020

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 somel ots 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). The recall did not disclose which of the lots were affected and all lots are recalled, not just the affected lots. 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.

RLC Labs advised that patients should talk to their healthcare professional before they stop taking their Nature-Throid and WP Thyroid medicine. Consumers with questions about the recall can email RLC at recall@rlclabs.com or RLC Customer Service  (877) 797-7997. Patients may return unexpired Nature-Throid and WP Thyroid tablets to their pharmacy who are legally required to refund the cost of the tablets. 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.

Dr. Friedman has several comments about this recall. This is the second recall of desiccated thyroid as some lots of NP thyroid were recalled in May 2020. Dr. Friedman sees this as unfortunate, but still believes desiccated thyroid is a good option for patients with hypothyroidism. Secondly, the “subpotent” Nature-Throid and WP Thyroid pills are only slightly less potent than stated in that only a few 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 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 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 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 goodhormonehealth.com.