Month: May 2025

❓Guest Question: Cushing’s in 15 year old male

MaryO Can You Help? , ,

Jess asks on the Message Boards:

Hello, – a little back story. I have a 15 year old son who over the past couple of years has gained 60 pounds and has increasingly become angry, depressed, anxious- to the point where he was having thoughts of suicide. We went to a behavioral health specialist who put him on anti-anxiety meds, but his aggression has become worse and worse. I literally found myself last week saying, never in my life would I think this kid would act so violently towards me or his siblings. He was a good, sensitive kid. His mood can change in the blink of an eye. He also is very withdrawn and anxious to the point where he now does online school. We have contributed all of this to puberty and life experiences, just typical teenage stuff… but last week, when i was able to actaully have him come out of his room… i noticed a “lump” on the top of back, base of the neck. I am not sure if a buffalo hump can be caused by playing video games and sitting in a computer chair for 18 hours a day? Or if this is considered a buffalo hump??

Respond to Jess here: http://cushings.invisionzone.com/topic/54467-cushings-in-15-yo-male

🖥 Cushing’s Slideshow

MaryO Cushing's Awareness Challenge , , , , , ,

Cushing’s Help message board member sherryc presented this PowerPoint at pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

Note that Sherry died on this date in 2020.  Here’s her bio.

 

❓Guest Question: Can you have Cushing’s with Normal Cortisol Levels?

MaryO Can You Help? , , , , , , ,

 

Kenz asked:

I got my lab work done.

I have all the symptoms of cushing’s Disease, from the buffalo hump and obesity to the easy bruising and the muscle weakness.

My cortisol levels came back normal, and I haven’t gotten the results of my ACTH yet.

Has anyone had normal cortisol levels come back and still had cushing’s Disease?

Respond here or in the Guest Forum

⁉️ Myths and Facts about Cushing’s: “You should be all better by now!”

MaryO Uncategorized , , , ,

Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

🎥 Pituitary Tumors and Treatments

MaryO Cushing's Awareness Challenge , , , ,

Pituitary tumors start in the pituitary gland. They’re usually benign (not cancerous) and rarely spread to other parts of the body.

Dr. Borghei-Razavi discusses pituitary tumors and treatments through minimally invasive surgical approaches offered at Cleveland Clinic Florida.

❓Guest Question: Is Itching Common with Cushing’s Syndrome?

MaryO Can You Help? , , , , ,

Is itching common with Cushing’s Syndrome?  Is it common to feel somewhat good for a day and then have itching, high blood pressure, nausea, flushed red face?

 

Please either respond here or in the comments below.

🎬 Zoe, Pituitary Video

MaryO Interviews, Meetings and Conferences , , , ,

Zoe shares her experience of living with Cushing’s disease, a rare condition that develops when your body produces too much of the hormone cortisol.

The commonest cause of spontaneous Cushing’s disease is a small benign tumour in the pituitary gland. Symptoms usually develop gradually and so the diagnosis may not be clear for some time.

Watch and share Zoe’s story to raise awareness of this rare condition.

 

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❓Guest Question: Vision Issues Post Surgery!

MaryO Uncategorized , , ,

I have been a recovering Cushings patient for 20 years, I still get all of the vision issues that I had before surgery, it comes and goes, normally last a month or 2 then goes away for a while. Is anyone else having the same issues?

 

Please either respond here or in the comments below.

ℹ️ Adrenal Insufficiency Self Care

MaryO Basic Info, What do you think? , , , , , , , , , , , ,

Info from MaryO

Luckily, AIU posted something on Facebook that gave me the perfect information to share:

 

They also shared this information, which I already knew and put into good use just yesterday:

Feeling overwhelmed? You’re not alone.

Managing adrenal insufficiency during extreme stress can feel like carrying the weight of the world — but tiny steps rebuild your strength.

We created this simple guide to remind you:

• Rest before exhaustion.

• Stay hydrated and balance your electrolytes.

• Breathe deeply to calm your nervous system.

• Celebrate every small win.

• Listen to your body if you need to stress dose or inject.

You are healing, even now. You are not alone.

Learn more and find community at www.aiunited.org

 

As a person with secondary adrenal insufficiency, I find often find myself in a situation when I need to stress dose and balance the electrolytes.  Many Cushies I know eat salt for this purpose but I don’t like salt.  If I’m eating pretzels or something else with removeable salt – i take it off.

I don’t know if I found it by myself on amazon or someone recommended it but I always have a product called – TaDa! – SaltSticks nearby.

Writing this post today, I actually looked at the directions and found that I’m supposed to take 2 at a time.  Oops!  One does help somewhat.  I’m sure that 2 will be even better.

To keep these and my hydrocortisone nearby, in addition to the actual bottles, I got some waterproof pill containers and keep them on my keychain.  The wider ones hold 2 of the SaltSticks exactly.

The narrower ones have hydrocortisone and Tylenol. The hydrocortisone is in the red pill container.

All 3 are on one ring which goes onto my larger carabiner clip so that they can be easily moved if necessary.

In my backpack, I have an adrenal insufficiency emergency kit of sorts that I got off ebay.  This also includes a bee sting kit.  If you want to know why, check out this post.  there is also information about my doctor, more hydrocortisone, benadryl, tylenol.

Both the keyring and the emergency kit have MedicAlert tags which include my member number so medics can find out just what I need, my DH number and my doctor’s number.

This info is also on my MedicAlert bracelet.  I bought this one years ago to honor Natalie’s memory – this is the same style she wore.

More on MedicAlert bracelets:

Shared with permission from https://aiunited.org/medicalbracelets/

Advice from a Volunteer Firefighter with Adrenal Insufficiency

My name is Jeannie, and I have been diagnosed with Secondary AI since March of 2015. To make a long story short, I was diagnosed with a pituitary adenoma in Feb of 2015. It was apron 8mm x 10mm at the time wit was found. On April 25th, 2015 I was getting ready for work in the early morning hours.. I passed out in my bathroom and was immediately rushed to the hospital by my husband. They did a secondary MRI and found that the tumor had tripled in size to 23mm x almost 41mm. My Cortisol was also so low it was undetectable by the lab. I was taken by ambulance to Emory University hospital in Atlanta where the Neurosurgeon I had been in consult with was. I arrived there on Sunday and was in Surgery Wednesday Morning. The surgery took 9 hours and recovery was close to 6.

Prior to this all taking place I was a volunteer firefighter, and had worked EMS for almost 16 years. I have been in nearly every situation possible. I see so many people that have our condition asking about Medic Alert bracelets, What kind they should have, what it should say on it, etc. So I have put together a short list to help out a little bit. This is coming from both someone who has this extremely rare disease, and also from the Emergency Medical Side of me. Knowing what We as medics look for in the field, How quickly things move, what we ask or need to know, etc.

Please know that this IS NOT Professional Medical advice, But this is advice coming from someone who can shed some light on how to potentially save your life if you should ever be alone, or without anyone who knows your condition and you fall unconscious or are unable to the the responders what your condition is.

First off if you are looking for a medic alert bracelet or wondering if you should get one.

**The answer is yes, If you have been diagnosed ANY TYPE of adrenal insufficient or are on replacement medication.. YES. you need one.**

Here are some of those reasons and some pointers on what they should look like / what they should say.

#1– If you are found unconscious, and there are not bystanders around to tell emergency crews what is wrong with you, You will go longer without your steroids. If we see on your bracelet that you are steroid dependent, it dissolves the ENTIRE guessing game of why you’re unconscious.

#2– It should have on there your emergency contact and a GOOD telephone number. That way if nothing else. We can call them. NOT EVERY EMS AGENCY HAS ACCESS TO THE “CLOUD” BASED SYSTEMS THAT STORE YOUR INFO. Please be sure that if your emergency contacts number changes.. You change it on your bracelet. There is nothing worse than wasted time calling a number that doesn’t belong to the person we NEED to talk to.

#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.

#4– Most EMT’s and Paramedics Don’t Understand or know about Addisons or the treatment involved. If nothing else, carry a letter from your doctor explaining what is wrong with you, etc. It is very rare, and NOT covered in most Paramedic courses. So please, for those of you that put “ADRENAL INSUFFICIENT” on your bracelet and NOT “STEROID DEPENDENT” please keep in mind that you may end up with the Paramedic that just graduated, is nervous, and will mistake adrenal insufficiency for Adrenaline insufficiency.. and try to give you epinephrine. Please understand that I have seen this almost happen. It is something that is easily misunderstood in the heat of the moment.

#5– If you have an emergency injection that you carry with you all the time, on your person, or somewhere close. PUT ON THERE THAT YOU HAVE IT! MOST ems agencies have standing protocol that they can assist with emergency medications (Don’t jump in here if you are one of those states that doesn’t allow it.. I said most) That way if we find you down, and look at your bracelet, AND see that you have emergency meds with you… guess what now, not only is the guessing game over, You’re ALSO getting the RIGHT EMERGENCY MEDS, instead of us having to either give you what we carry, or you having to wait until you get to the ER and the ER doc has to go through your file and figure out that you need the medication that’s been in your pocketbook the ENTIRE TIME.If you are unsure if your state allows this, or if you Local EMS agency can do this. Contact their local medical control and ask. If they do, Please offer to give a small talk on what the disease is and how to use the emergency kit. Most will know once they see the acto-vial, but if they do not, Please educate them. Explain to them that it can be the only thing that could save your life.

Please take the time and make sure that you have correct information on your bracelet. Secondary or Primary, the treatment in an Emergency situation is the same. So there is NO need for you to spell out if you are secondary or primary. Both get the emergency injection in case of a crisis. Both get fluid bolus, heart and blood pressure monitoring. Nothing is different when it comes to an emergency situation. If you have any questions on the wording or what to get on it. Be sure you at least have an emergency contact, That you are steroid dependent, and where your emergency injection is located.

IF you know that your local EMS agency uses the “cloud” for stored emergency info, you can spend the money to get it. But I worked for service that covered a county with over 100 sq miles, and we didn’t use it. It is unreliable and takes too much time to log in to the system, try to read the small number on your band, type it in, etc. When you can simply put the information on the band itself.

The image below sure looks like it was made by Sandra Boynton but I got it from another page on Facebook.

These tips are good for anyone who needs a little self-care – not just people with adrenal insufficiency!

 

What do you do for self care?  Please tell me in the comments.

 

📰 New Advances For Treating Complex Pituitary Tumors

MaryO Helpful Doctors , , , , ,

Pituitary tumors can vary widely in severity, with some requiring surgical intervention. While certain pituitary tumors are more straightforward to remove, those that extend beyond the medial wall of the cavernous sinus (MWCS) are considered complex. A delicate region near the pituitary gland, the MWCS contains critical structures like cranial nerves and the carotid artery, which present additional surgical challenges.

Historically, surgeons avoided entering the cavernous sinus due to the risk of damaging these vital structures, but new advancements have made it possible to remove tumors more effectively and safely. Innovative surgical techniques, such as endoscopic endonasal approaches, are allowing neurosurgeons to navigate these delicate areas with greater precision and confidence than ever before.

Neurosurgeon Dr. Kaisorn Chaichana, who has performed well over 100 such procedures at Mayo Clinic in Jacksonville, Florida, says, “The latest advancements in pituitary surgery are driven by improved camera optics. Angled scopes now let us see around corners, helping us distinguish the pituitary gland from the tumor with far greater precision than traditional microscopes. Doppler and ultrasound also allow us to identify critical structures like the carotid artery, ensuring safer, more complete tumor removal.”

If a tumor that extends into the MWCS is not removed, it may continue producing excessive hormones, leaving patients with persistent symptoms. “It’s almost as if they didn’t have surgery at all because there’s still that tumor there causing that hormonal imbalance. That’s why achieving total removal is so critical for long-term success,” said Dr. Chaichana.

Although the procedure is not entirely new, widespread adoption is relatively recent, and only a few institutions perform this surgery regularly. The complexity of the procedure requires expert knowledge of the surrounding anatomy, as well as careful coordination between neurosurgeons, ear, nose, and throat (ENT) specialists, and post-operative care led by an endocrinologist. “The cavernous sinus is an area a lot of surgeons aren’t comfortable with, and that’s why we specialize in that surgery here,” added Dr. Chaichana. Mayo Clinic’s multidisciplinary approach has improved patient outcomes, allowing for safer tumor removal with reduced complications.

For patients with recurrent tumors or those initially deemed inoperable, re-evaluating surgical options at a specialized center may provide new hope. If the tumor is confined to one side of the carotid artery, surgeons can often achieve a complete resection. However, if it extends beyond this point, additional treatments such as radiation or medical therapy may be required.

Patients facing pituitary surgery should seek a neurosurgeon with experience in endoscopic techniques at a specialized facility with extensive expertise in pituitary tumor treatment.

Choosing the right surgical team can significantly impact outcomes, particularly for complex cases. While not all tumors require MWCS resection, for those that do, this approach offers a path to better surgical success and long-term remission. With ongoing advancements in pituitary surgery, more patients than ever have access to safer, more effective treatment options.

For more information or to request an appointment, please visit Pituitary Tumor Care – Mayo Clinic