Today is the birthday, or anniversary, of the Cushing’s Help message boards. They were started September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)
As of today, we have 73,130 members who have made countless posts.
Find the message boards here: http://cushings.invisionzone.com/
More from Dr. Karen Thames:
Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”
Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”
Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!
Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis
Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.
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Patients with suspected adrenocortical carcinoma (ACC) may also undergo additional tests to identify excess sex steroids and steroid precursors, mineralocorticoids and glucocorticoids.
Table 2 provides a summary of the tests recommended by the European Society of Endocrinology in collaboration with the European Network for the Study of Adrenal Tumors in patients with suspected ACC.10
Pseudo-Cushing’s syndrome is when symptoms are similar to those of Cushing’s syndrome, but further tests show that the syndrome is not present.
Common causes include consuming too much alcohol, obesity, persistently high blood glucose levels, pregnancy, and depression.
Cortisol isn’t bad; you need it to help regulate your responses to life. Regulation involves a very complex interplay of feedback loops between the hypothalamus, pituitary gland, and adrenal glands, says Dr. Singh.
“In general, cortisol levels tend to peak in the late morning and gradually decline throughout the day,” he explains. “When a stressful event occurs, the increased cortisol will work alongside our ‘fight or flight’ mechanisms to either upregulate or downregulate bodily functions. [Affected systems include] the central nervous system, cardiovascular system, gastrointestinal system, or immune system.”
In addition to normal processes that trigger or suppress cortisol release, levels can also be affected by different medical conditions, Dr. Singh says. For example, if someone has abnormally high levels of cortisol, this is called Cushing’s syndrome, which is typically caused by a tumor affecting any of the glands that take part in the process of cortisol production.
When people suffer from abnormally low levels of cortisol, it’s called Addison’s disease. It generally occurs due to adrenal gland dysfunction, but could also be the result of abnormal functioning of any of the other glands in the cortisol production process.
Finally, if you use corticosteroid medications such as prednisone or dexamethasone, prolonged use will result in excessive cortisol production, Dr. Singh says.
“If the medication is not adequately tapered down when discontinued, the body’s ability to create cortisol can become permanently impaired,” he says.
From https://www.yahoo.com/lifestyle/manage-pesky-stress-hormone-cortisol-184900397.html
We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.
Sign up here: https://rarepatientvoice.com/CushingsHelp/
Each expert will discuss the following topics:
Sunday • September 14• 5 PM PDT/ 8 PM EDT
Via Zoom Click here to join the meeting or
https://us06web.zoom.us/j/4209687343?omn=87459672811
OR
16694449171,,4209687343#
Slides and copy of the paper and the press release will be available before the webinar and recording after the meeting at slides
OR
Join on Facebook Live – https://www.facebook.com/goodhormonehealth at 5 PMPDT/ 8 PM EDT
Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.
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THURSDAY, OCTOBER 2ND
NADF at 40 Years Paul Margulies, M.D., FACP, FACE NADF Medical Director Adrenal Crisis and EMS: Standards and Expectations Recreating Human Adrenal Gland In Dish: Toward Endocrine-Level Reconstruction Resources & Tips for Navigating Insurance, Financial, & Legal Issues Imaging adrenal adenomas with [68Ga]Ga-PentixaFor My AI Registry and Emerging Trends in Treatment Strategies |
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FRIDAY, OCTOBER 3RD
Adrenal Insufficiency: An Overview Smita B. Abraham, M.D. Endocrinology, Diabetes and Metabolism Montefiore Medical Center Emergency Preparedness: Solu-Cortef Injections for Adrenal Crisis Everything You Need to Know about Adrenal Insufficiency in Youth in 30 Minutes or Less Cushing’s talk – details forthcoming Introduction to Congenital Adrenal Hyperplasia: Daily and Emergency Treatment NADF Resources for patients and caregivers |