Can You Help?

Can You Help?

MaryO Can You Help?, Cushing’s Help, message boards , , , ,

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!

$$$ Attention Cushing’s Patients ~ Patient Advisory Board $$$

MaryO Can You Help?, Cushing’s Help , , , , , , , , , ,

Cushing’s Syndrome Patient Advisory Board: Patient Qualifier

Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.

Q1: Are you a U.S. Citizen and at least 18-years or older?

Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?

Q3: Did your doctor find a tumor on your Pituitary Gland?

Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:

  • ketoconazole
  • ISTURISA® (osilodrostat)
  • KORLYM® (mifepristone)
  • SIGNIFOR® (pasireotide), OR SIGNIFOR® -LAR (pasireotide).

Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≥3-months.

If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.

❓Can You Help?

MaryO Can You Help?, Cushing’s Help, message boards , , ,

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?

MaryO Can You Help?, Cushing’s Help, message boards , , ,

Can someone please offer help, ive been suffering for a year and just got blood results today with a high cortisol reading. My doctor said that my contraceptive pill could have caused this, however, I am not on the regular pill but on the POP progesteron only pill.

Is anyone aware of if this raises cortisol levels the same way the regular combined pill does?

Any help would be so very much appreciated!

 

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

 

Thanks!

❓Can You Help? Very Few Symptoms

MaryO Can You Help?, Cushing’s Help, message boards, What do you think? , , , , , , , ,

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!

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

MaryO Can You Help?, Cushing’s Help, message boards , , ,

 

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!

❓Can You Help? Looking for Naturopath

MaryO Can You Help?, Cushing’s Help, message boards , ,

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

Hi, anyone here able to recommend a naturopath who has been successful in getting Cushings under control? Thanks!

Please comment here and I will get your answers to Heidi or on the boards directly.

 

Thanks!

 

❓Can You Help? Normal Test Results

MaryO Can You Help?, Cushing’s Help, message boards , , , ,

From the Message Boards:

My GP has suspected Cushings for a while now. I have the extreme fatigue, muscle weakness, round face, facial flushing, Buffalo hump, weight gain right in midsection – all the alleged tale-tell signs. However, I’ve had to urine tests and one blood test and they are always normal.

I’m seeing a third endo now and she agrees with my GP and plans to do another series of blood tests.

I guess my question is has anyone else out there ever had initial normal cortisol test results only to later find out it’s Cushings?

Please comment here and I will get your answers to Lizzy or on the boards directly.

 

Thanks!

❓Guest Question: Legal Assistance for Cushing’s Patients

MaryO Can You Help?, Cushing’s Help, message boards , ,

 

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?