Cushing’s FAQ
Filed under: adrenal, adrenal crisis, Cushings, FAQ, growth hormone, pituitary, Rare Diseases
A FAQ (Frequently Asked Questions). Directions are in each category for adding your own question.
IMPORTANT: The information and material posted on this Web site is intended as general reference information only. Specific facts and circumstances may alter the concepts and applications of materials and information described herein. The information provided is not a substitute for professional advice and should not be relied upon in the absence of such professional advice specific to whatever facts and circumstances are presented in any given situation.
Please note that there are several questions waiting to be answered at this time. Your question will be answered as soon as possible.
This is a different website than the message boards and requires a different log-in, although you may use the same log-in name and password.
Adrenal Insufficiency
Adrenal insufficiency is a life threatening chronic illness. An active and vigorous lifestyle with normal life expectancy is possible as long as the prescribed medications are taken regularly and adjusted when indicated. As with most chronic diseases, adrenal insufficiency demands that the patients take responsibility and develop self-management skills and techniques.
Read an article on Adrenal insufficiency
Cushing’s Types
Cushing’s Disease/ Cushing’s Syndrome: Cushing’s is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Your adrenal glands, which are right above your kidneys, release cortisol when they receive a chemical message from your pituitary gland. The message comes in the form of adrenocorticotrophic hormone (ACTH), which travels through the bloodstream.
Cushing’s Disease Is the result of a pituitary tumor which causesthe emergence of secondary male characteristics (like hair growth, acne, etc.), and ovarian failure. Other symptoms usually include high blood pressure and water retention.
Cushing’s Syndrome: Causes the same symptoms, but is a disorder marked by overproduction of adrenal hormones, which can cause a drop in LH and FSH.
An estimated 10 to 15 of every million people are affected each year. Cushing’s is an increased concentration of glucocorticoid hormone (ACTH) in the bloodstream that is being produced by an adrenal gland tumor (adenoma). Ectopic Cushing syndrome refers to the production of ACTH in a location other than the pituitary gland or adrenalgland. Examples of ectopic sites include thymoma, medullary carcinoma of the thyroid, pheochromocytoma, islet cell tumors of the pancreas, and oat cell carcinoma of the lung.Symptoms include weight gain, central obesity, moon face, weakness, fatigue, backache, headache, increased thirst, increased urination, impotence, mental status changes, and muscle atrophy.
Treatment varies with cause. If an ACTH secreting tumor is involved then it must be removed surgically.
Growth Hormone
Human Growth Hormone (hGH) is produced in the pituitary gland of humans, and the hormone is secreted throughout a person’s lifetime. It promotes growth in children and plays an important role in adult metabolism.
More about HgH
Other Diseases
Where Can I Find…?
Medical Apps, Part 4: RXmindme
Filed under: adrenal, adrenal crisis, Cancer, Cushings, General Health, growth hormone, Health Care, pituitary, Rare Diseases
I often forget to take my meds. And other days, I can’t remember if I took them or not.
So, here’s another great (FREE!) iPhone App: Rxmindme
From their features list at http://www.rxmind.me/Features.aspx
Making your life easy
RxmindMe includes:
- Nine different types of reminders
- A Passcode Lock screen for your privacy
- Multiple types of alert sounds
- Photos of your prescriptions
- Email your prescription history
- The FDA Drug Database for easy searching of medications
- Historical records of all your reminders and prescriptions
- Multitasking
- Fast App Switching
- iPhone 4 / iPod touch 4 – Retina Graphics
- Snoozing Capabilities, 15 minutes, 30 minutes, 1 hour, or 2 hours
- Ability to add multipule prescriptions / pills / vitamins / medications to a single reminder
RxmindMe has a growing feature set. We keep adding new things to help fellow pill takers monitor their medications, track what they take, and view their history of their medications.
We believe compliance is important for anyone taking medications, that is what RxmindMe aims to do, help you stay healthy and safe. No matter what you call your medications – pills, prescriptions, medications, or vitamins, we have the App to track them all.
RxmindMe allows you to use any application and receive reminders. We utilize iOS 4′s Local Notifications instead of the old Push Notifications. With Local Notifications, you need no network connection. Meaning you’ll receive your reminders anywhere at any time.
The home screen of RxmindMe gives you all your reminders for the day in once place. It allows you to easily identify which reminders you have missed, which reminders are coming up, and which reminders you have already taken.
From this home screen, you will have the option to create snoozes, add as needed reminders, and add prescriptions you take randomly throughout the day – like Asprin.
RxmindMe allows you to create nine different types of reminders
- Daily reminders, ones that can occur on any day of the week
- Weekly reminders, like daily reminders, but you can set weekly repeat intervals
- Monthly reminders, monthly reminders that occur on a specific date during the month
- Monthly reminders, monthly reminders that occur on a specific day of the week of a specific week of the month – for example, the last Friday of the month
- Our new Every “X” Days reminder, repeats every few days
- Hourly reminders for specific hourly intervals
- As needed reminders which are taken infrequently
- On specific dates, reminders that you want to occur on specific dates – for example the 28th of November
Now with the ability for devices with cameras to take photos of your prescriptions, you can see visually what you are supposed to take.
RxmindMe will keep and store your photos for your medicates, then it will display them along your reminders.RxmindMe now includes the up to date FDA database. You can search for prescriptions in RxmindMe, select the one you want, and it will auto populate the details for you. No more entering the units and name yourself!
No more forgotten meds for me!
Medical Apps, Part 3: Capzule PHR
Filed under: adrenal, adrenal crisis, Cancer, Cushings, General Health, pituitary, Rare Diseases
I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It’s only $.99 in the iTunes store:
It’s called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html
There’s a free version to try called Capzule PHR Free
Features
* Push Notification to alert appointments
* Data Visualization via Interactive Timeline
* Edit records and upload files from Desktop/Laptop
* Record conditions and allergies
* Store doctor appointments
* Enter medications
* Email summary and graphs
* Print or download summary from Desktop/Laptop
* Maintain immunization records
* Enter vitals in Metric or Standard units
* Analyze line graphs of vitals and lab results
* Keep family, social, and medical history together
* Create custom health screening templates
* Enter notes, upload results and files
* Manage physician and insurance information
* Reset password when password is lost
* Categorize Notes and Attachments
* Email flowsheet data in CSV format along with graphs
* Email Summary with graphs embedded
* Backup and Restore from Desktop/Laptop
* Export CSV data from Desktop/Laptop
* Email documents
* Add files from other Apps (iOS 3.2+)
* Summary Reporting Filter
Medical Apps, Part 2: FindER
smilez133 posted this on the message boards here
Massachusetts General Hospital Launches iPhone App to Locate Emergency Rooms
FindER Connects Users to the Most Complete Database of ERs in the U.S.
BOSTON—Researchers at Massachusetts General Hospital’s (MGH) Emergency Medicine Network (EMNet) announced today the launch of EMNet findER™, a free iPhone application designed to help users locate the closest emergency room to their current location, as well as provide directions and additional information with a touch of the screen. FindER uses the iPhone’s global positioning system to quickly direct patients to emergency rooms anywhere within the United States.
“FindER is designed to provide key information to people experiencing health emergencies,” says Carlos A. Camargo MD, of MGH’s Department of Emergency Medicine and EMNet director. “FindER uses information from EMNet’s own database of emergency departments, which is the most complete and accurate in the nation.”
Along with directions and general information, findER is designed for quick phone calls to both the care-center itself and in cases where necessary, 911 emergency services.
“EMNet researchers maintain a database of nearly 5,000 emergency rooms in the United States. Unlike a simple Google search where the results may include many emergency centers that have closed or moved, or even veterinary hospitals, findER’s results are based on an aggregation of emergency room listings from multiple sources that have been confirmed by researchers at EMNet,” says Camargo. “FindER is designed to help patients get to emergency rooms in the shortest amount of time.”
FindER is ideal for travelers, especially those suffering chronic medical conditions, or those traveling with friends or relatives with health problems. FindERis available now as a free download in the iTunes app store. Simply click this link or search “EMNet findER,” to download. For a short demonstration video, users can visit YouTube.
From http://www.massgeneral.org/about/pressrelease.aspx?id=1248
MaryONote: Just as info – the iTunes store said that there was nothing called FindER when I did a search. I found it only by typing EMNet findER. I have the app – looks great – and I hope I never need it again!
Medic Alert Bracelets
Since the last topic was about Adrenal Insufficiency, it seemed that a great next topic would be about Medic Alert Bracelets.
Many doctors insist that everyone who has had pituitary or adrenal surgery have a bracelet – and some will even tell patients what they should say on them.
While I was still a patient at the NIH (National Institutes of Health) after my pituitary surgery, I was given my first bracelet along with my kit in care of adrenal crisis. I had to learn to give myself a shot before I could go home.
Now, my endo checks mine at every visit to be sure I’m wearing my bracelet and reads it to be sure it’s still legible and checks to see what the text says.
He feels that the bracelets – and he insists that they LOOK like medic alert bracelets, not disguised as jewelry – are life savers.
I’m not so sure – I read stories on the message boards that people have gone into AI (adrenal insufficiency and no one has ever looked at their bracelet. That was certainly the case for young Sam. Her mom had instructions everywhere, none were heeded and the situation rapidly turned disastrous.
…We have dealt with Addison’s for 7 years; but I have handled everything. Apparently the vials of solu-cortef with step-by-step instructions hanging on the bulletin board in the kitchen, medicine cabinet and in every vehicle somehow missed his attention… (read the whole story at survive the journey: Stars Go Blue)
A Paramedic wrote on the message boards:
I’d like to add a couple things from the perspective of a Paramedic…
A lot of us are not taught about adrenal insufficiency during our education….nor do many of us (if any at all) have a protocol to administer Injectable for AI unless we are able to contact the ER doctor for permission. So…if any of you should have an AI crisis please gently nudge your paramedic to contact the receiving physician for permission to administer the medication. I know this sounds like a lot of responsibility on the part of the patient…but you have to realize that we’re taught to recognize the most common life threats and endocrine disorders (other than diabetes) most usually do not present with life threats (we all know that as cushing’s is more recognized that this will change)…and our protocols cover the most common life threats….so while we may recognize that you are hypotensive and need fluids (IV) and are sweaty, nauseated, decreased level of responsiveness etc…we are not equipped to deal with the actual cause unless you help educate us….
Also…please don’t get angry with us….if we are having problems understanding…just gently insist that a call be made to your doctor or the receiving ED (usually not feasible for us to call your doctor since they do not come to the phone for just anybody but if you have access to them, as many cushies do, it would be great to talk to them)…
Paramedicine is evolving….someday soon, hopefully, our education will include more diagnostic skills…untill just in the past 5 years or so we were NEVER to make a diagnosis at all…just treat the symptoms!!!! So there is hope out there for futher understanding of such a critical problem for those without adrenal (or asleep adrenals) glands….
The medical alert jewerly is a life-saver and we do look for it….
So, the questions for discussion are:
- Do you have a medical alert bracelet
- Does your doctor check on it or suggest proper wording.
- If you have one, has any medical staff read it during a crisis
- And… what does yours say?
