❓Guest Question: Legal Assistance for Cushing’s Patients

 

If you can help, please respond here or on the Message Boards.  Thanks!

I believe I need legal assistance related to i humane treatment by city and/or county officials. I can explain further, if need be, once I find out if it’s even possible to get help. And I certainly cannot afford to pay an attorney, since my income is SSD (Disability), which is low and fixed, which has been the case since Cushing’s reared it’s remorseless, destructive head in 2008. Is there any legal assistance fund set up for Cushing’s patients?

 

❓Can You Help?

I think I have Cushing’s I have about 10 symptoms…my cortisol levels came out high with a 24 hour urine hormone panel but my endocrinologist did not even mention it. At the time when I had the test done, (March 2020)I had no idea what cortisol was. I just figured and trusted my endocrinologist would prescribe me with whatever hormones and or treatment I needed and would have me take whatever tests he order. Anyhow, in a range from 1-10 for bedtime cortisol, my result was 27! Cortisol metabolites, range from 1160-2183, my result was 5370!!!

The only reason I started to do more research on cortisol is because just a few weeks ago I started experiencing severe chest pain from the moment I wake up and any little thing stresses me out and gives me anxiety and I feel like I’m gonna have a heart attack any moment!  So I looked back at my paperwork and noticed these really elevated cortisol levels. But my endocrinologist never mention them… Why? This is how I found this disease,  I have so many symptoms of Cushing’s disease, And it is not a result of exogenous stuff causing cortisol levels to rise. I don’t take any medication whatsoever and was not taking any medication at that time or for the past year. All I have taken for the past year is what he prescribed, thyroid medication and progesterone. Someone please tell me if these levels are of concern from your perspective.

Please respond here or on the message boards.

Thanks!

🥸 Cushie 12-Step Program

I “acquired” this from another site and changed the names to protect the innocent…

As you know many of us Cushies have had or have an addiction to Googling.

I suggest anyone who feels compelled to google symptoms go to the message boards to ask for support instead of typing these or any words such as “buffalo hump” in the google search engine. When this is done all roads lead to one thing…… You Eat Too Much!; You’re Depressed!

So, anyone who is about to hit enter on their computer which feeds their Google addiction…. go to the message boards to ask for help. One of the other Cushies who have achieved “Google sobriety” will help you down of the ledge.

1. Admit for now that you are powerless over your urge to Google.
2. Believe that a power greater than you (that would be other Cushies) can help you off that ledge
3. Decide to turn your “fingers” over to a higher power as you understand it.
4. Make a searching and fearless inventory of what you hope to gain from googling.
5. Admit to yourself and to another human being the exact nature of your addiction to Google.
6. Allow other Cushies to assist you when you are so scared you are thinking about googling symptoms.
7. Humbly ask for Xanax, Klonopin or Cortef in order to calm yourself from googling symptoms
8. Make a list of all the diseases you think you have or have had and survived and have a burning ceremony and then…. take a nap.
9. Cite all Google sites you have searched diseases on and delete them from your favorites/history.
10. When you start thinking….STOP….. do something else, like take an inventory of your test results.
11. Seek through prayer and/or meditation to improve your thought process. Do not travel to “OMG’ or “What if” land (this is a serious suggestion).
12. Having had a spiritual awakening as a result of these steps, carry this message to all your Cushie friends and anyone else you know who has a Google addiction.

13. Now I know there isn’t a 13th step, however, if you have noticed you are drinking too much wine or taking too many pills, please remember there are other 12 step programs for that, lol…

So, what about it – what are *your* suggestions to cure Google Addiction?

❓Can You Help?

Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck.

After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.

I have extra fat in my sternal notch as well, looking at these pictures do I have a moon face, etc.

I’m waiting for the results of my 24 hour urine test.

Thought I would ask to see what you all thought. Thanks for your help.

This potential Cushie has posted several photos here.

Please respond here, on the message boards, or in the original post.

Thanks!

❓Can You Help? Very Few Symptoms

A guest on the Cushing’s Help message boards asked:

I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.

I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.

I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!

Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?

Anyone else with only a few symptoms?

Thanks!

 

Can you help Ellie out?  Please respond here or on the Message boards.

Thanks!

❓Guest Question: Upcoming Endo Appointment

Donna Asked:

Can someone please help me?  Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?

Please respond here or on the message boards at http://cushings.invisionzone.com/topic/54455-please-help/?page=0#comment-474250

❓Guest Question: Rife Machine

This question came up on the message boards today: Anyone ever used a Rife Machine on Cushings syndrome?

My response:

I don’t think so – this is the first I have heard of a Rife Machine so I looked it up and found this info:

Quote

American scientist Royal Raymond Rife invented the Rife machine. It produces an energy similar to radio waves.

Rife’s machine built on the work of Dr. Albert Abrams. Abrams believed every disease has its own electromagnetic frequency. He suggested doctors could kill diseased or cancerous cells by sending an electrical impulse identical to the cell’s unique electromagnetic frequency. This theory is sometimes called radionics.

Rife machines are Rife’s version of the machines used by Abrams. Some people claim they can help cure cancer and treat other conditions like Lyme disease and AIDS.

From https://www.healthline.com/health/rife-machine-cancer#claims

 

Anyone else?  Have you heard of this for Cushing’s?

Frantbri, are you going to try it?  If so, please keep us posted!

It would be great if something like this worked.

 

⁉️ Would *YOU* Do This?

I remember someone on the House TV series trying a stunt like this on the episode titled Deception.

At a betting parlor where House happens to be, a woman collapses and House makes sure she gets to the hospital. He thinks she has Cushing’s syndrome while Cameron starts to think she has Münchausen syndrome, a syndrome at which the patient creates the symptoms of a disease, guaranteeing them attention and sympathy.

Rare Case of Woman Manipulating Saliva Tests to Support Cushing’s Diagnosis

Late-night measures of cortisol levels in saliva may not be all that helpful in diagnosing Cushing’s syndrome, a group of physicians discovered upon learning that a difficult to diagnose patient had manipulated the samples.

Although this behavior is extremely rare, the research team from the University of Calgary in Canada, argued that — when a diagnosis becomes difficult — it may be advisable to confirm suspicions using another and more reliable method that can distinguish natural from synthetic glucocorticoids.

The study, Factitious ACTH- dependent, apparent hypercortisolism: the problem with late night salivary cortisol measurements collected at home,” was published in the journal Clinical Endocrinology.

The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.

The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.

Physicians started an investigation, including overnight dexamethasone suppression tests and late-night salivary cortisol tests, which indicate increased levels of cortisol likely caused by abnormal functioning of the ACTH hormone.

Imaging did not show any suspected lesions in the pituitary and adrenal gland, and all further examinations did not reveal any disease changes that might have contributed to the increased cortisol.

The woman was put on a dopamine agonist. This treatment triggered a loss of eight kilograms (almost 18 lbs) over six months, and the woman said she was satisfied with it. But two late-night cortisol measurement showed continuing high cortisol levels.

When the clinic started using a new type of analysis to measure cortisol, however, findings changed. The new test, which was more sensitive, indicated massively higher doses of cortisol in re-analyzed saliva samples compared to the older results.

The new test could detect synthetic glucosteroids, but could not indicate if synthetic steroids were responsible for the higher levels seen in the retest. So the team used a method called liquid chromatography-tandem mass spectrometry. This technique can identify specific molecules, and revealed that the women had manipulated the samples using prednisone.

The woman’s physician also paid a surprise visit to collect a new saliva sample, which turned out to have normal cortisol levels.

The woman neither denied or confirmed manipulating the samples. And the team was contacted two months later by her new physician, requesting confirmation of her Cushing’s syndrome and details on her case.

The researchers believed the woman most likely has what is known as Munchausen’s syndrome, a mental illness that leads patients to feign physical disease. A 1995 report by the National Institutes of Health showed that 0.7 percent of all people investigated for too high cortisol had this syndrome.

Despite the rarity of this case, the team argued that chemical analysis is a valuable tool for both determining sample manipulation in difficult Cushing’s syndrome cases, or a different potential problem.

They also cautioned against putting too much trust in very elevated late-night cortisol, particularly when the symptoms do not match the cortisol increase.

From https://cushingsdiseasenews.com/2017/10/05/rare-case-of-woman-manipulating-late-night-saliva-cortisol-tests-to-get-cushings-diagnosis/

📚 A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy

 

The author of this book (A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy) has submitted a bio and is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error.

At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

❓Can You Help? Possible Cushing’s or Cortisol Issue

 

Hi wondered if anyone could help me out – been suffering with these symptoms lately and wondered if cortisol could be the issue

 

– Thinning legs

– Fat building in the trunk (abdomen and chest)

– Seemingly more fat under my chin

– Excessive fatigue even after a nights sleep

– Weak muscles – mainly back /arms and shoulders

– muscle wasting

– Feeling very low and anxious

 

Thanks in advance,


Can you help JT out?  Please respond here or on the Message boards.

Thanks!