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Thursday, July 22, 2010

Long time no post...

To say recovery from Cushing's is rough is quite the under statement. To catch up, my endo stopped my steroid replacement in May.  All my tests were 'normal'---how many times do Cushing's patients hear that even when you know something isn't quite right? Anyways, about a week later, I lost my appetite.  Just couldn't eat...nothing sounded good and I was just never hungry.  Shortly after, I developed diarrehea like I had the flu. Then, the nausea and vomitting started.  The vomitting was strange because it wasn't every day but almost every other day and it was violent.  I'd puke all day long.  Miserable doesn't begin to describe it.  It was the never ending flu.  I called my endo and was basically told this had nothing to do with Cushing's, surgery or recovery.  Basically, I just had a 'cold.'  The symptoms didn't stop, I was feeling worse every day.  I ended up going to my general practioner hoping for at least something for the nausea.  He said he didn't know what was wrong but suspected a bacterial infection in my intestines.  He gave me a strong anti-biotic and medicine for the nausea.  The anti-biotic just made me feel sicker and I ended up puking more.  The symptoms weren't relieved at all.  The anti-nausea meds weren't touching this.  Another week passes and I end up at my surgeon's office.  They wanted to rule out needing a CT scan since I did have surgery on my brain and was staying so nauseated.  He determined it was nothing to do with the surgery and said I need to see a gastronologist.  I was referred immediatley and yet again, this doctor was stumped.  All the symptoms of an infection, yet no fever.  I was dehydrated at this point so he sent me to the ER to get fluids and labwork.  At the ER, they determined I was very dehydrated..2 bags of fluids and still couldn't pee..I was pretty 'dried' out to say the least.  They also said I had a urinary tract infection and put me back on anti-biotics.  I had no other symptoms of the UTI, which was odd but I did as they said and took the anti-biotics hoping I would start to feel better.  No such luck..a week later I was back in the ER for the nausea, vomitting and diarrhea.  I told them I was concerned about adrenal insufficiency and about my Cushing's, etc.  The ER doctor was not all that familiar (imagine that) but was smart enough to check my thyroid and cortisol levels, etc.  Turns out, my thyroid was low, even though I am on medication for it and my cortisol was 'normal' for a normal person but should have been higher given how sick I've been.  He called my endo doctor who had them give me a shot of a cortisteroid and give me a prescription for more.  It was a miracle..I was feeling better in just a day. It was like my body was saying 'Thank you, Lord' for giving it what it so desperatley needed.  I went to my endo's office on Monday and they ran a bunch of test.  Today, we found out that my pit gland is damaged.  Either from the tumor itself or when they removed it during the surgery.  It was damaged along the way and basically the pit gland doesn't like to be 'touched'...so now, it is not producing ACTH and I need to stay on the steroid replacement for quite a while.  While I am not happy about yet another 'bump' in the road but am so relieved to know why I got so sick and that there is something that can be done about it.  I am still a long way from being well but at least I am back to normal 'crappy' and not death-like crappy.

4 comments:

  1. I've been praying for you, Lisa... I'm sorry to hear that they took so long to help you with this set back... I wonder how long they'd be dismissing it if THEY were feeling like that??!

    Met with my internist yesterday, first time seeing him, first specialist I've been able to see so far -- my own GP had reached the end of the road as far as what she could do to figure this out. My internist is BRILLIANT. He has a pretty good idea of what this might be, and I'm sure you can relate ALL TOO WELL to this, but as much as I pray he's not right, since that would mean something is wrong, there IS something wrong, and what he is pointing to would explain every single issue down to a "T". I now know how you felt when you were told about Cushings the first time, how it described you and your experience... Please pray we're close to finally having some answers. He did blood work already (right in the middle of my appointment), but the big test we're waiting for still hasn't been scheduled, and... well, we know how long things can take up here in Canada... praying it's days, not MONTHS.

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  2. Praying for you, Lisa! I'm sorry that this journey has been so long...

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  3. I have had Cushing's since 12/1988. I have had two transphenoidals, second one in 1998 to remove the pituitary glands also. Then in 2003 they discovered tumors on adrenal glands so they were removed. I have no glands, yet I still have a high ACTH level. I recently was in the ICU for 12 days due to a fever of 104, and my tongue was swollen 4x's the normal size. This was due to severe adrenal crisis. All my meds are to replace hormones that I do not make on my own. When this all started 23 years ago, and still to this day, no one can explain to me why I still look "CUSHINGNOID". Why I can't lose weight, and gain back my muscle in my legs and arms. I have come to realization, that no one can help me, and I will have this until the end of my life. My husband and children have also had to endure this journey, and it definitely has not been an easy one. I wish all of you that are just beginning this good luck, and remember to never let them tell you that you are 100% cured. Most likely you are not.........

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    1. Hi Gail. I would love to talk to you. I am about to have a pituitary surgery and I am unsure if I am doing the right thing. I cannot seem to subside my fear. Can anyone of experienced cushies please email me? junemonica_l@yahoo.com Thank you.

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