Tuesday, November 17, 2020

Will You Try Amazon Pharmacy?

"Amazon Prime members have access to an additional pharmacy perk called the "prescription savings benefit," which offers a discount of up to 80% on generic medications and up to 40% on brand-name prescriptions."

😳 🤩 🥳

Amazon Pharmacy also says it will accept "nearly" all insurance plans.

Will you give Amazon Pharmacy a try? We definitely will. I take 20 medications a day, and my husband has at least five. Out of all the things that we spend money on, our medications and their prompt delivery are most important to us.

Mail-in order pharmacies we have dealt with in the past have had very poor service, unnecessary delays, and technology that just wasn't up to snuff. This will not be a problem for Amazon.

Consumers need someone to bust up current medication pipelines, someone to facilitate the quick delivery of meds , and someone to hopefully lower costs for consumers.

My fingers are crossed that Amazon will fix this. Amazon has always provided superb customer service. Shopping on an intuitive user interface is sooo much easier than dealing with clunky set ups of other retailers, much less CVS and Walgreens.

We are proud Prime Members since Amazon first shipped diapers and wipes to a very tired Cushie mom back in 2008. We have been getting groceries delivered through Amazon Fresh long before the pandemic. We love our shipments and savings through the Subscribe and Save program. Our experience with Amazon has always been great.

I just wish that the company would respond to criticism and clean up their reputation by being nicer to employees (allowing more time for workers to get from one spot in the warehouse to the others, allowing bathroom breaks, allowing worker protections through unionizing, etc).

I will get back to you with more details as I try Amazon Pharmacy. Tell me about your experience, too. Promise?

*****

[Let's not turn this post into a debate about Amazon. It will stress me out, and I'm on a fixed cortisol dose. You don't want to make me sick with adrenal insufficiency on purpose, do you? I can't help others when I'm sick!! ❤️ ]

CNBC report

https://www.cnbc.com/2020/11/17/amazon-pharmacy-free-prescription-delivery-for-prime-members.html

Go straight to Amazon Pharmacy

https://pharmacy.amazon.com/

Why Amazon bought Pill Pack and how they turned that into Amazon Pharmacy

https://www.cnbc.com/amp/2019/05/10/why-amazon-bought-pillpack-for-753-million-and-what-happens-next.html

Friday, November 13, 2020

COVID Care + AIU SURVEY for Post Op Cushies

Hello dear Cushie friends.

I hope all y'all are staying safe and hunkering down in Month 8 of the COVID-19 pandemic. We must be so careful. Be sure to check out the the National Adrenal Disease Foundation's COVID survey and one-page handout to guide medical professionals treating us for both COVID and adrenal insufficiency. Please take a moment to print this, place the copy in your emergency kit, and email it to loved ones likely to accompany you to the ER.

I also wanted to share an email I received today. I encourage all post-op Cushing's patients to participate in this survey for Oregon Health Sciences University. While I'm so pleased that a researcher seeks to expand medical knowledge on the disease we pick up on the other side of Cushing's, I want to stress (haha) that we Cushies must try to describe how horrible our care is as we transition from one disease to another. We hear that endocrinologists routinely fail to prepare us properly for AI before surgery, and we continue to struggle post op without proper guidance that every other disease seems to be getting. That is not fair, and we deserve better.

Now it is our turn. Your participation in this survey will amplify the voices of the Cushing's community. Please do not let the opportunity pass you by. I'm going to make the medical establishment pay attention to us, if it is the last thing that I do. I need your help.

Take care and stay safe, friends. ~ Moxie Melissa

P.S. Be sure to follow my Fight Cushing's with Moxie Facebook page and become my FB friend. Send me a pm and introduce yourself. I'll help you all I can and make sure you are in the groups that will help. Be sure you are part of our extensive online community.

Please help us collect valuable data. All answers are de-identified and confidential.

AIU has been contacted by a health professional at the Oregon Health Sciences University (Moxie added link to Cushing's info) in Portland, Oregon. She's asked us to share this and spoke how much more research and knowledge is needed for our community. Here is the link to the survey. This survey is for anyone -- in any country -- affected by AI. If you suffer from any form of adrenal insufficiency, are a relative, or a medical professional working with someone with this disorder, you are invited to participate in this survey.Your COVID exposure or status is only one part and will be towards the end of the survey.

The survey will take about 10 minutes to complete.

Survey Intro:

"People with Addison's disease or Adrenal Insufficiency (AI) are at risk for adrenal crisis in the event of an illness, but little is known regarding the risks associated with COVID-19.

This survey was developed by a collaboration of patient advocacy representatives and endocrine medical professionals. It will take approximately 15 minutes to complete. By combining many responses we hope to understand more about individual risks for the development of adrenal crisis during this pandemic, and to identify treatments that will influence clinical decisions to improve self care in the future."

Take Survey

Copyright © 2020 Adrenal Insufficiency United, All rights reserved.
We're sending this email to those who've signed up on our lists, visited or store or attended past conferences and events.

Our mailing address is:

Adrenal Insufficiency United

PO Box 168

Oregon City, OR 97045

Tuesday, October 27, 2020

COVID-19 and AI Patients

COVID-19 Information for Adults & Children with Adrenal Insufficiency

🆘Give to all emergency and hospital personnel 🆘

#covid #ER #AandE

[ Print multiple copies and place them with your emergency kit in your purse or car. Print another for your loved ones.]

The National Adrenal Disease Foundation has been conducting a survey (link below) regarding your concerns about COVID-19 with adrenal insufficiency. Survey responses have provided excellent insight into concerns regarding COVID-19. Specifically, many people with adrenal insufficiency are worried that EMS, Emergency Room or hospital staff will not know how to treat them properly. To address this concern, NADF has created a one-page 'handout' document with medical staff instructions for adults and children. As always, the guidance provided in the document has been fully approved by our medical advisors. Download the PDF below for printing.

If you do find yourself in a situation where you have COVID-19 and need to go to the hospital, please don't hesitate to hand this to all medical personnel involved in your care.

https://www.nadf.us/covid-19-information.html

To participate in the NADF survey, click here:

(https://www.surveymonkey.com/r/W2NQSMD)

Sunday, October 25, 2020

Cushing’s and Bilateral Adrenal Tumors

This post is for those with nodules on both adrenal glands, and the endo/ surgeon wants to remove one first to see how it goes. Before you agree, be sure to ask to be tested for Conn's and the gene PRKAR1A. [In fact, there are other genetic causes for bilateral adrenal tumors like iMAD, PRKACA, PRKAR1A, GNAS, PDE11A, PDE8B,PBMAH, ARMC5, plus others].

PPNAD/ normal CT scan.

PRKAR1A-negative familial Cushing's syndrome: two case reports
Lee Ling Lim et al. J Med Case Rep. 2015.

CONCLUSION:
"The cases of these two patients illustrate the difficulties involved in diagnosing primary pigmented nodular adrenocortical disease, a variant of adrenocorticotropic hormone-independent Cushing's syndrome that is managed with bilateral adrenalectomy. A high index of suspicion for this disease is needed, especially in adolescents with adrenocorticotropic hormone-independent Cushing's syndrome who have a significant family history, features of Carney's complex, and no resolution of Cushing's syndrome after unilateral adrenalectomy.

**Patients with primary pigmented nodular adrenocortical disease can either have bilateral/multiple adrenal nodules or normal adrenal glands visualized by computed tomography.*** Long-term surveillance is imperative in patients with confirmed Carney's complex and in those who have not undergone complete genetic testing to exclude this hereditary disorder."

https://pubmed.ncbi.nlm.nih.gov/26619967/

Sunday, March 1, 2020

🧬 GENE THAT METABOLIZES CORTISOL

I tried many cortisol replacements in the first five years post op bilateral adrenalectomy (BLA) — hydrocortisone, prednisone, dexamethasone, prednisolone, and in many combinations. None worked for me. So much wasted time! I don't even have gastroparesis or gut issues.

Last week, I asked my endo to review my results from the genetic test, www.genomind.com i used to find the best anti depressant last summer to see if he saw anything that affected endocrine issues. He said I have an issue with my CYP3A4 gene that causes me to process cortisol rapidly. Labs always showed I had enough cortisol but my cells disagreed. I was always feeling low with extreme fatigue. Now that I have been on the cortisol pump for 14 months, that low feeling is gone. My body gets much more of what it needs in small batches of cortisol delivered slowly and directly. Even still, I have to take a higher amount than many due to this gene. I still take 30-35 mg solucortef daily even though it drips straight into the blood stream.

If you aren't feeling well post op, get the Genomind test. It could improve your mental health as well as your cortisol replacement issues.

I'm still learning about the genetics stuff. Feel free to help me research and share what you learn. I have a theory that this CYP3A4 gene may also hinder cyclical Cushies like me to always get normal results on 24-hour urinary free cortisol tests (UFC) while always getting high hydroxycorticosteroids (OHCS) on those same UFCs. I feel this is a major scientific breakthrough.

Tuesday, February 18, 2020

article: 2013 v. 2017 adrenal crises

A retrospective analysis of adrenal crisis in steroid-dependent patients: causes, frequency and outcomes.

2019 article

Although we seem to be aware that extra precautions need to be taken to avoid adrenal crisis during trips and emotional stress, the truth is that most patients are AT HOME when AC occurs.

https://bmcendocrdisord.biomedcentral.com/articles/10.1186/s12902-019-0459-z

Thursday, February 13, 2020

Get Connected: Facebook groups

Fighting Cushing's with moxie is difficult. We have to surround ourselves with people who know what it's like and how to help us. One of the best Cushing's resources is our local, state, regional, and country groups on Facebook. Are you a member of yours?

Local groups are also a great resource to:

1) find a helpful doctor or who to avoid

2) Cushing's makes Cushies isolated and lonely. Meet local Cushies who empathize and understand.

3) create Cushing's awareness projects in your community

4) ask for help when ER docs aren't following protocol for treating adrenal insufficiency and adrenal crisis.

** BUILD YOUR SAFETY NET **

We have links to all known Cushing's groups below. Special thanks to Samantha B. for developing this project and helping to gather these links.

If you are already in your local groups, please help us guide our Cushie friends to these local groups when you see someone asking about doctors in the big Cushing's groups, like The Many Faces of Cushing's You can help. We are in the business of saving lives, aren't we?

https://pituitary.org/medical-resources/physicians

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Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

M o x i e_F a v o r i t e s :

* Moxie's Tips to Diagnosis

* Initial Work up for Cushing's

* Comprehensive symptoms list

* Can your cooking pots be the cause of Cushing's?

* Cushing's for the new folks

* Cushing's patients often need multiple surgeries

* What People Need to Know about Cushing's Awareness Month

* Cushing's symptom list, dates, pain scale

* PNA's Pituitary Patients' Bill of Rights

* Cushies describe Cushing's

* Listen to 3 call-in talk shows with Cushing's expert Dr. Friedman

* Listen to Dr. Friedman's 4th call-in show about medical therapies

Symptoms of Cushing's

**You can have Cushing's even if you don't have all of these symptoms**
Anxiety
Irritability
Extreme mood swings and rage, gets confused with bi-polar
Medication-resistant depression
Sensitivity to loud sounds and light
Absent sex drive
Facial redness
Rounding of the face (moon face)
Unexplained weight gain around belly
Buffalo hump, or hump on back of neck
Pink or purple stretch marks
Thicker or more visible body and facial hair
Acne
Muscle weakness
Extreme fatigue
Thin and fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Bone thinning
Recurrent infections
Sleep disturbances, night sweats, awake at midnight or 4 am
High blood pressure
Diabetes mellitus
Irregular or absent menstrual periods in females

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.
1) Do 24 hour UFCs with 17-OHS.
2) Get cortisol blood draws at midnight and again 30 minutes later.
3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?
Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

What Doctors Will Claim You Have Instead of Cushing's:

Obesity (lose weight, lose symptoms)
Polycystic ovarian syndrome (PCOS)
Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
Back and muscle pain
Diabetes
Blurred vision, visual field loss, double vision
Chronic fatigue syndrome
Dry, oily, or sweaty skin
Impotence or infertility
Joint pain, joint/bone abnormalities
Migraines
Muscle weakness, carpal tunnel syndrome
Temporomandibular joint/TMJ/jaw joint pain
Thyroid imbalance or "slow metabolism"

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.
We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.
This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.
DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.
Endocrine:: Thyroid problems and diabetes (many have this, caused by Cushing's)
Orthopedics :: joint pain, joint/bone abnormalities, Plain ol' back and muscle pain (caused by Cushing's)
Dermatology :: dry, oily, diaphoretic skin
Ophthalmology :: blurred vision, visual field loss, diplopia
Neurology :: headache, proximal muscle weakness, carpal tunnel syndrome
Urology :: impotence, hypogonadism
Obstetrics and Gynecology :: galactorrhea, menstrual irregularities, infertility, hirsutism, polycystic ovarian syndrome (PCOS)
Fibromyalgia (no lab tests can prove this, given when they don't know what else is wrong with you)
Don't bounce around. See an endocrinologist. Show them you are an informed patient. Don't let them turn you away to suffer.Get yourself help. Demand it, if you must. Don't give up.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.