Questions, questions, questions,

Hello Elizabeth. You are in the right place for answers on here. There are not many of us,but we have experienced Cushing's.

I first noticed things weren't right in about 1992, though in hindsight I think I'd had signs earlier on. On being sent to a general medical hospital doctor,I was sent for adrenal scans,which didn't reveal anything significant.The doctor saw me sometime after this,asking how my problems were.I said that things hadn't got any worse,and since at that time,my Mum had suddenly died,I felt I had other things on my mind,so the doctor didn't pursue it any further,and couldn't make any sense of my symptoms anyway.Five years later,my symptoms worsened,and new ones appeared.I was in a different area then,with a different doctor and hospital,and after several months of telling me I had a virus,depression,early menopause,I was finally referred to a specialist who recognised the symptoms.So you see,the symptoms are not all the same all the time,and aren't always as bad all the time.I was eventually diagnosed in 1997,and the pituitary tumour(benign) was removed the end of that year.I now need replacement medications.I hope you get more replies.Good luck.Gill

Hello Elizabeth,  Firstly I am so glad that you have had a diagnosis, that is step one.  You can have many different symptoms that come and go mainly because you may have gone to the one GP with a symptom which he had treated.  Until you are diagnose there is so much waiting.  Now you are on the way.  It is a difficult journey but you will get there.  We are here to help you in any way we can.  I had my op in 2012 and am now getting better but like Gill I have had extra things as well.  I still take medication for replacement of the things the Pituitary Gland normally supplies.  Make sure you take someone with you when you go to see your Endocrinolodist, they will be detached enough to ask all the questions you need answers to.  I write down a list and make sure I get replies to every question.  it is good that your GP has managed to diagnose you.  We are such a rare lot that many GP's never see anyone with Cushings.  Let us know how you get on.  Any questions one of us will try to answer.

Thanks Vicky! My GP not only managed to get me diagnosed right away but managed to find me and awesome endo which I have to say is pretty wonderful. Up intill that poing my endo had been all about having weight loss surger. He refused to to me about anything and I am an uncontrolled diabetic. Guess why??!! Anyway, Another question I have is does one have good day and bad days? For me, that is pretty much how it goes and I never know which or how many of the sypmtoms are going to show up at any given time. The only thing I can count on is that when they show up, they aren't going anywhere for a while.

Also, we are not that much different form Firbromyalga patients are we? Also, some Cushings sites say we are only 10-15 in a million but there are other sites that say 1-2 per million. Whish is it? Is the diffence because mor people are finally getting diagnosed?I am not elible for surgery because the tumors cover the adrenal glands and they don't want to remove the glands now, so early in the game. There is a drug that I might be taking. Called Korlym. Does anyone know anything about it.

Hi, Certainly good days and definitely bad days which are "duvet days".  You need to be able to give in whenever you have a duvet day.  It is very important that you rest when you need too.  I have the figure as about 5-8 in a million.  I think it is becoming more well known which means that more people are being diagnosed.  I was only diagnosed in the end because of an episode of Doc Martin!  Another you have to remember is that your whole body has had a very very rough ride.  It will take time for it all to get better, but it will.  As a matter of interest are you able to say what county you are in.  I am trying to find a common denominator for people who get the disease and where the best Endo's are.  So far prokonged use of anti-biotics could be a point and the Endo's I know of are Bristol, Cheltenham, Oxford and Leicester.  Take Care.  I am hoping that Debs will find time to reply, she is brilliant with tests, staistics etc.

Thanks Vicky, for replying. I am here in the good ole USA. I am sure you can imagine how delighted I am to finally have people to help me understand what is and had happened to my body so I can help it repairt it's self. Believe it or not, I am so relieved to know that There are good das and bad days. After all the trauma of this thing, today I am extraordinairily tired but no other symptyom are showing themselves. I have some that are just that are just a regular part of my life than others that pop in now and again, For example, I have developed very curly hair. never have had curly hair in my life and couldn't make it curl to save my life. Well, that has all changed. Never would have thought of that as a symptom and it certainly is not on the list as  a symptom. But in ready through some blogs, three different people mentioned that they had developed curly hair!! How weird is that? Not a big deal but I am learning to be cautious and then to ask stupid questions. I also am finding myself second guessing myself all the time which I suspect is due to what I have learned is called "brain fog" I just thought I was "slow" Please excuse my rants and ignorance. Thahnk you for taking the time to read this even if it does make no sense. Hope to hear from you soon. 

It is the strangest thing to have very rare disease that is common to dogs and horses.I am wondering if it istime for me to start looking at that. I have felt thus far that I have had enough on my plate without tryon to figure that out as well. Maybe later? I am dreading this week as it going to be crazy busy. Hubby is an Episcopal priest so I think you all know what I mean. I am utterly exhausted already and we just did a Shrove Tuesday pancake supper.Not sure how to get through the rest of the week. Any way. Have got to run.Hope to hear from you soon.

 

Elizabeth:

I know this diagnosis is overwhelming and scary as I've had to deal with being hit with the same news twice.

Yes you can have symptoms, many of them that come and go, I had 42 symptoms all of them confusing, which never had a rhyme or reason of when or how long they would last. What you have more than likely is "cyclic" Cushings ..I am the FIRST patient of Cushings to ever be diagnosed with the cyclic Cushings.

In 1989, I had 23 drs , after 9 years of a nightmare of blood tests and 24 and 48 hour urine tests the drs finally realized I was "cyclic"...my blood tests and urine tests never matched the textbook diagnosis. I was finally saved by having a MRI of my head WITH dye...the radiologist saved my life by seeing that the stalk of the pituitary gland was bent.

They put me in the iCU for a week doing special testing...after the results are they doctors had a major seminar in Seattle WA with Endocrinologists from you around the world. The doctors finally believed in "cyclic" Cushings.

I have had the Transphenoidal Adenomectomy where they operated through the mouth. I have ad 8 surgeons...brain..eye..ear..nose and throat doctors...the surgery was easy for recovery.

I was just diagnosed 10 days ago with a reocurring adenoma in the pituitary...my pituitary was removed in 1989...so the cavity has refilled with another tumor..a large one..I am dealing with all the tests again.

If you have ANY questions whatsoever just answer here...when I was diagnosed there was no support at all as I was the only person in Washington State who had Cushibgs.

There is,a Cushings newsletter published quarterly through The Cushings Support & Research Foundation....www.csrf.net...sign up for this so you can see the support we have and you can read about others and their diagnosis and recovery. ..none of us,are exactly the same with symptoms and diagnosis and recovery.

I am amazed your GP got the diagnosis...Cushings is rare and difficult to diagnose...I endured years of tests with no answers and being told it was all "in my head" ...yes they were right ..it was in my head.

Please feel to answer me here..if you have ANY questions feel fee to ask me...I've been dealing with this situation for 26 years..

Pam Housden

Hello all! Not having a good day today. I seem to hurt all over. Want to go lay down but I have house to clean and unfortunately it won't clean it's self!. Would also like to eat lunch but it is only 1030 am.I am already so sick of this disease even though I just received my diagnoses and hadn't even been looking for one which means I haven't had to spend years of my life trying to get answers. I admire you all so much.Still trying to notify the people hubby and I think should know is exhausting is a slight understatement and I am just pooped.Either on the edge of tears or a screaming fit much of the time. Poor hunny is just taking on the chin. He is awesome!

Question; Does food/diet really make a difference? I have just received a cookbook for Cushing's patients and frankly don't find and arguement for switching to a vegetarien diet let along a compelling one. There really is no information in it. Some OK recipes though.If anyone has the answer I would appreciate it or if you could at least point me in the tighy direction.