help

❓Can You Help?

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

I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.

I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.

I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, either :(

Anyone?

Please respond here or on the message boards.

Thanks!

❓Can You Help?

MaryO 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!

❓Can You Help?

MaryO 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?

MaryO Can You Help? , , , , ,

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!

16 Years of Help and Support.

MaryO Uncategorized , , , , , , , , , , , ,

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 16 years ago tonight.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

maryo colorful zebra