Hi Rin,

Thank you for sharing your story. We are not medical professionals, so I can't give you true medical advice. You are entitled to get a second opinion. Was the specialist they sent you to a pituitary specialist or a general endocrinologist? From what I have heard, they pool all people in to the normal lab result range, including those who are sick. What is normal for me may not be normal for you, they are averages. Your symptoms should also be considered in making determinations for your treatment. Ask your doctors for clarifications. If your hormones are not causing the tiredness and your symptoms, than what is? Push them to find out for you, or find another doctor who will.

We have a list of pituitary specialists on our website. Make sure that your doctors are experienced at treating people with Cushing's. Ask how many patients they have successfully treated. Here is a link to our list of specialists.

Pituitary Physicians Listings

Also feel free to contact me at tammy@pituitary.org.

Take care,

Tammy

Hi Ocean.

We do have comments on our forums and someone did post after you did. We try to encourage the use of our forums and we have several topics for discussion. Feel free to ask questions.

As mentioned by Rin there are groups on Facebook as well. The Pituitary Network Association has a couple of groups on Facebook. Here are the links to our groups, they are closed groups so you will have to request to join. I try to approve requests as soon as I can.

Pituitary Network Support Group
Pituitary Spouses and Family Support Group

Feel free to ask questions here or you can email me at tammy@pituitary.org.

Take care,
Tammy

Also, I am a member on Facebook called Cushings Syndrome chat, this is helpful with lots of posts and support xx

Hi . Yes new to this web site, so Just quick prev history.. Under active Thyroid, on medication for this. Pituitary tumor found beginning of May 2014, causing Cushings. Tumor removed Mar 2015 and my cortisol went down to 50, given HYDROCORTISONE tablets, felt rough so my dosage was doubled, went home , after couple weeks felt ok, how ever I was still on 40mg of cortisone ( 20mg 8am, 10mg 12pm, 10mg 4pm), and as Im beginning to lower it, as advised and Im now on 30mg ( 15mg 8am, 15mg 2pm) Ive felt majorly tired achy sleep bad, and getting up in the morning is a real effort, my memory, and ability to process things which has been bad since I had Cushings symtoms has got worse. AI lot of the time I will sit or lay down and when ever i move (as i cant stay still in same position for more than 30 mins) I feel its using up so much energy! Saw specialist last week , had blood tests done come back fine on paper, growth hormone ok, thyroid ok, Cortisol higher than theyd like.. 700, however shouldnt be cause of tiredness they said. My symptoms are typical cushings ones muscle, bone aches ,round face large tummy, memory bad thses seem worse than before the surgery! I feel like Im barely getting anywhere, and really could with some frienly advice please!

Thanks
Rin

Is there no one here that comments on this disease?