Questions, questions, questions,

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Hello. I am new to this group and have just received a dignoses of Cushings.Needless to say, my head is still spinning. I have so many questions my doctor doesn't have time to answer them all. In going throught the list of symptoms, it turns out that I have had or have most all of them at one time or another, which brings me to my first question. Can symptoms come and go without treatment or do you have to have them all the time? I might have pain in the hips for severals weeks or months and suddenly start having boils or facial hair then after a little while move on to another aspect of the disease. Is the true of all Cushing's patience?

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  • Posted

    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

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    • Posted

      Thanks Gill for responding to my post and sharing with me, your story.Thank God you finally got the help you needed. I was lucky and desperate when my GP suggested I see my endo for Cushing's and I was already in the process of changing dr.s when that happened. It just so happened that this dr was young and opened to new things and that my GP had already ordered (and I had done) one of the tests used to determine whether or not I had Cushing's and that I had had a CT scan that showed I had a mass on adrenal glads so there is no questions as to whether I have it or not. Now it is a matter of confirming for the insurans so I can have the medication which costs enough to give someone a heart attack, since I am not eligble for surgery right now, only last case scenario.What is freaking me out besides the rarity of this disease and the cost of medication is that there are so many symptoms and they can be so widely spead that is so difficult to "this is the Cushing's) As I said to VIcky, brain fog is a huge deal for me right now. Anyway, nuff said from this corner right now. I would love to hear from anyone on this board; where you are from and what is your story. Thanks again for responding GIll

       

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  • Posted

    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.
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  • Posted

    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.

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  • Posted

    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.
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  • Posted

    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. smile Hope to hear from you soon. 
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    • Posted

      I'm not sure quite how to say this but Cushings in quite common in dogs and horses!  They get very curly hair!!  No wonder you have good medics in USA, theu are so much more advanced in things.  Have you had prolonged use of anti biotics?  Keep in touch.
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  • Posted

    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.

     

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  • Posted

    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

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    • Posted

      Hi Pam and welcome to the forum.  So glad that you have joined us with your experience of "cyclic" Cushings.  it is so good that people can now ask about this rare extra to Cushings.  Very sorry that you are having to go through the whole thing again.  I had never heard of surgery through the mouth, throught the nose is bad enough and interesting that you found the surgery easy to deal with.  As you so rightly say we are all different.   Again welcome.

      P.S. If Debs is online any thoughts?

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  • Posted

    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.

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    • Posted

      Elizabeth:

      If you have Cushings that is not resolved by surgery and the tumor removed..then you will be hitting your head against a brick wall. Do not beat yourself up over your weight at this time, love yourself for who you are inside and understand that the weight is something totally out of your control. The pituitary is the "Master" gland in the body it runs every thing..your metabolism and even your skin.

      Focus now on getting the answers you need and eating healthy...all food groups...one,way to watch what you are doing nutrition wise and calories and carbs...is to download My Fitness Pal application on your cell or tablet or laptop...watching your carbs and calories. Low carbs is the only thing I've noticed that I can lose weight decently on...

      HOWEVER..until you get the Cushings addressed you need to just take good care of yourself, eating good healthy meals...and no you do not need to ear vegan....try to keep active if possible ...walk...15 mins 3 times,a day, 3 to 5 days a week...if not capable, walk in an area it's easy to sit down....and just start building your stamina if you can.

      Fatigue and exhaustion Is one of the major symptoms. I would be so tired I could not keep my eyes open, if I was working and had a weekend off...I'd sleep so much I got nothing else done.and I was,a single mom with 2 kids.

      I remember one of the "wrong" diagnosis was thst I had Candida Albancus...sp?..I remember getting that book and reading the recipes and I sat there and bawled because it was just so overwhelming and I was too tired to even make anything. I did eventually make some of the food, but it never worked to fix me..of course.

      Like I said in another post, when they agressively tested me for the Cushings one of the things they watched was my appetite. ..as I would have an enormous appetite at times, I would just be starved...the Cushings does effect your hunger. For now, try not to worry about your weight so much and try to keep yourself as healthy as you can, eat well and get good night's sleep.

      If you have any more questions, feel free to ask me.

      Pam

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    • Posted

      Hi Elizabeth,  So sorry you are having a bad time.  I know Pam has replied to you but I have to say that when I was diagnosed with Cushings I was told that it didint matter what I ate so to carry on as normal.  All the food goes straight to fat so you may as well eat what you want.  Once the Pituitary Gland tumour is removed you should lose weight at first quite quickly.  I lost a stone (sorry don't do metric!) in the first month then gradually the rest will come off.  I think I said that before I had Cushings I was a size 12/14 model.  With Cushings I went up to a size 24 with a 45 inch waist.  I am now back to a size 14.  The only troub le is I still forget that I don't have to wear maternity clothes any more.  Your endo should talk to you about diet.  I have never heard of a recipe book for Cushings patients/  Be yourself and do what ever makes you feel better.  We are all different and there are no hard and fast rules.  Make time for yourself!!!!
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