1. Community
  2. Diabetes and hormone problems
  3. Cushing's Syndrome

cushings anxieties! Help!

Posted , 2 users are following.

katy216
katy216

Hi everyone, I was diagnosed with cushings disease ten years ago at the age of 10 and have had it return what is now my fourth time. I have had 3 pituitary surgeries but they keep growing back, even with less than 10% of the gland left. I have also tried gamma knife radiation and that has not worked we just found out recently. Although this is my fourth time going through most of these symptoms, I was wondering if some of you guys could fill me in on what adult like symptoms are. I am honestly having the worst time holding my concentration with things lately and my memory has been awful. Is that from this? Does it get better?

Also my doctor wants my next step to be a bilateral adrenalectomy. Any major benefits or things to be cautious of with that? Anything would be great. No one I know from around here has the disease and I don't like talking about it to people unless they know about it so any info would be greatly greatly appreciated (: thanks so much for reading my post!

0 likes, 3 replies

3 Replies

  • sheltielife
    sheltielife katy216

    Posted

    Hi Katy,  I had/still have Cushing's Syndrome not disease. This was caused by what they said was my left adrenal gland I had a tumour on that. It took me years to get a diagnosis. Finally, last May after a lot of fighting with the doctors saying it wasn't that I had my left gland removed and I wish they had done bilateral. After having my left gland removed it was difficult to adjust the dose of steroids until my other gland worked for 2. The histology showed hyperplasia. It wasn't long before my other gland worked for 2 and I had been told it could be quite a while. Now, all my symptoms are coming back! I am sure my other gland is over producing and I am waiting on test results. The operation was not bad at all.  I have heard that with hyperplasia you need both glands removed.  So, in answer to your question about benefits or things to be cautious of I would say that the benefits will be wonderful and not as difficult has having one gland removed as there is no wondering what dose of steroids you should be on they will know. The only thing I can think of that you might not like is that you would have to be on steroids for life, but belief me I would rather have that than my symptoms coming back and having to have two operations rather than one. I hope this helps without this forum I would have been lost and feeling on my own as it's such a rare illness.
    • katy216
      katy216 sheltielife

      Posted

      Thank you thank you. I am glad to hear that the sugery didn't have and serious complications for you. But I am so sorry you have to be going through the symptoms again. I've been through that stage before and you just have to keep telling them that you know something is wrong with you. You are the only person who knows how you feel on the inside. If something feels off, report it. It's worked for me in the past and now my doctors appauld me for having that hindsight with myself.

      I hope everything turns out ok with all of your Cushing's syndrome needs and I will look for posts from you to see if I can help answer questions (: wishing the best

      Katy

  • sheltielife
    sheltielife katy216

    Posted

    Yes, don't worry I have learnt you have to keep at them.  The renal man I first saw that was sure what the cause was argued with the endocrine lot as even he knew what they didn't! He used to get so annoyed that they wouldn't list to him but of course it wasn't his field so he couldn't arrange the operation. Like you they have said about you he was amazed at how much knowledge I had, purely gained by the internet and places like this forum. Perhaps we should invite the doctors onto the forum so they will learn as wellbiggrin
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.