Cushings Syndrome Adrenal Gland Tumor

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Cushings Syndrome Adrenal Gland Tumor Cushing's Syndrome is rare. This includes Cortisol producing tumors Or Hyperplasia, no pituitary CD

A good website to read. It does include Cushings Disease-pituitary tumor as well as adrenal tumors. Looking for a good e...
07/08/2024

A good website to read. It does include Cushings Disease-pituitary tumor as well as adrenal tumors. Looking for a good endo or surgeon, check under Resouces or ask me. I keep a list from my members.
Www,

Cushing's Syndrome Resources

Happy follow-versary to my awesome followers. Thanks for all your support!Candie Mae Burton one of my faves What kinds o...
07/08/2024

Happy follow-versary to my awesome followers. Thanks for all your support!

Candie Mae Burton one of my faves

What kinds of my posts do you enjoy most?

Dexascan please. Did you know that. osteoporosis is something that each of us with Cushings need to take serious? High c...
18/07/2024

Dexascan please. Did you know that. osteoporosis is something that each of us with Cushings need to take serious? High cortisol causes bone loss. For many post op that require steroids-well then we have a double whammy since steroids also cause osteoporosis.

An informative website. https://cushingscommunity.com/?
08/04/2024

An informative website.

https://cushingscommunity.com/?

Striving to make the negative impact of Cushing’s syndrome even rarer. - The Cushing’s Collaborative Community

In case anyone might be interested
21/03/2024

In case anyone might be interested

To kick off Adrenal Disease Awareness Month, we're please to be hosting a Facebook Live Q&A with our very own Dr. Tobias Carling. He'll be answering all of your questions on all things related to the adrenal glands, adrenal disease and adrenal surgery. The live will be held on Monday, April 1 at 4:00 p.m. ET.

If you aren't able to attend, no worries- drop your questions in the comments below and we'll address them during the live event. Afterward, we'll post a video to our Facebook feed for you to watch back.

Looking forward to connecting with you!

Have you been interested in sharing your Cushing’s Syndrome story? https://m.facebook.com/story.php?story_fbid=829770122...
05/03/2024

Have you been interested in sharing your Cushing’s Syndrome story?

https://m.facebook.com/story.php?story_fbid=829770122517811&id=100064544929878&mibextid=cr9u03

CSRF Cushing’s Support & Research Foundation, is giving us information that WE can use to share our story. We need to share our knowledge and help teach others so they can advocate for themselves. This is why I started my FB Cushing’s Syndrome Group.
Whether we share on the many internet platforms available, or by contacting your llocal media, the two links included plus your story is what you can reach out with.
You can always share your story on their website.
https://csrf.net/living-with-cushings/patient-stories/share-your-story/

If you are not following their FB page, click the link above.
Every year they do conferences and team up with NAD
https://www.nadf.us/

There have been many celebrities over time who have shared a photo and we've collectively had "that feeling". Amy Schumer is the first one in a long time to say it out loud, and that has caused an uptick in curiosity about Cushing's.

Do you know anyone in your local or national media? Even if you don't, are you the kind of person who is comfortable reaching out and possibly representing Cushing's if they responded?

We put together a press release and some talking points that anyone reading this is welcome to use. We recommend a cover message introducing yourself as a local Cushing's patient moved to action by Amy Schumer's diagnosis. We are also reaching out to local and national sources. Let's see if we can get some advocacy on a national level while this particular spotlight is still on the issue!!

Press Release:https://csrf.net/wp-content/uploads/2024/02/2024-02-29-CSRF-Cushings-Press-Release.pdf

Cushing's Talking Points:https://csrf.net/wp-content/uploads/2024/02/Cushings-Talking-Points.pdf

Steroids post-op can be frustrating as we taper. If your doctor has you dropping by 10 mg, that’s a lot. 5 mg or even 2....
27/12/2023

Steroids post-op can be frustrating as we taper. If your doctor has you dropping by 10 mg, that’s a lot. 5 mg or even 2.5 every month or two can be too much. Don’t lose hope. Right at my 7 year post-op mark on 20 mg of Hydrocortisone, my new Endo has me tapering off. Since May I have dropped 12.5 mg and am currently down to 7.25 mg. I thought this would never happen! Cortisol labs are low in normal range. 🙏🙏
Once tapered off we still need to follow adrenal insufficiency protocol for at least a year.

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Cushing’s Disease from Adrenal Tumor

I had a golf ball sized tumor on my left adrenal gland, had been diagnosed and treated for High BP, diabetes, needed glasses and had several other “old age” type symptoms. That left me undiagnosed for 7 years. One day I had a severe anxiety attack that snet me to the hospital. I only stared, and coulsn’t speak. Spent three days in the hospital 3 CT scans, 3 MRI, blood and urine tests to reveal the mysterious tumor. I have three vague memories of those days. I had most all the symptoms, but in my town, doctors just don’t see a case due to the rarity. Of course after disgnosis, they all knew something was the matter and 2 + 2= Cushing’s. They just didnt add up my symptoms. Surgery basically saved my life. I was so sick and still almost 2 years after surgery, i can’t piece together 2 years before surgery. Scary is I was driving. Today, I still have osteoporosis, having 8 bones broken so far, taking 15 mg steoirds daily, legs still weaker than before, so stairs are ot my friends yet, but otherwise I am healthy. I hope my page and story and my eagerness to spread the word and symptoms can save a life and help others seek a true diagnosis and get the surgery they need. Questions? I am always here and happy to seek infomtion for those things I do not have an answer for.