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Newly Diagnosed with Cushing Syndrome

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caroline31144
caroline31144

I Am 38 yrs old. I was told in July 2014 that i had Cushing Syndrome. I had been suffering with High Blood Pressure since 2010. I was put on medication but suffered bad headaches so that started the cycle of trying different tablets to find a suitable one. The fatigue, muscle weakness and depression started soon after this. I was told i had M.E. 

So my health since 2010 was slowly but surely deteriating. When i could no longer 'run up the stairs' i did become a little worried as i wasnt what you would call unfit. Then my back became very weak where i literally couldnt do anything. A scan shown a slip disc. In August 2013 i went on holiday and fell over and broke my ribs, iv had worse falls in the past on a night out and never experienced this before! In September 2013 after feeling unwell and knowing my Blood Pressure was up (i suffer headaches with it) i went to my GP who took my reading and it was 156/122. I have been really poorly since then. My Blood pressure has stayed high, been put on different tablets and after a few months of this was told i had 'Uncontrollable Blood Pressure' basically they didnt know what to do with me! I was sent for blood test for Carcinoid that came back clear. I was referred to Hospital in Feb this year and had to do a 24hr urine test. I had a follow up appointment in May where i was told they had found Elevated cortisol in it and i was to be referred to have a Dextamethosone test. Then the 'Darkness' started. I became that low that i tried to take my own life. I thought i was going crazy! My GP rung the Hospital and spoke to a Consultant and i was admitted that very day, this was in June. I had the 48 hrs dextamethosone test while i was there during my 5 day stay. It came back i had Cushings but i had to wait on a blood test to determine whether it was in the putuitary or the Adrenal. I was told it was a 2wk wait to find out this. In July i was told it was in my Adrenal area so was officially diagnosed with Cushing Syndrome. The Consultant said i would have a CT Scan within 2wks and the tumour would be took out asap as they couldnt rule out it being Cancerous! You can just imagine how i felt. Still, i came out of there feeling positive thinking i would soon be on the road to recovery. How very wrong. It took 6wks to have the Scan and a further week to find out the results and thats only because i mithered my GP practice Manager to access the results on the system as when i phoned my Consultants Secretary she blatantly lied saying they werent back when infact they were!! I was told iv got a nodule of 3 and 1/2cm x 2 an 1/2cm x 2 an 3/4cm on my left Adrenal Gland BUT they couldnt tell me whether or not its cancerous as my Consultant is on holiday til 3rd Sep and he has to look at them and get back to me with an appointment!! So basically im in living hell. Its nearly 8wks iv been sat here worrying whether its cancerous and whether my 3 children are going to grow up without a mother. This awful illness has stripped me of everything. I dont even feel like the same person. Iv got every single symptom apart from the stretchmarks on the stomach. In all fairness my stomach was stretched to 50inches during my pregnancy so this is prob why!! Its certainly fatter, my bust is bigger, face rounder, red face and neck, hump on back, skinny arms bum and legs, thin skin, easy bruised, periods stopped- you name it, iv got it!! I used to enjoy reading, playing scrabble, watching TV - all this has stopped as my consentration is horrendous. I cant even trust myself to drive. My Mental Health has suffered, this is the hardest thing for me to accept. I used to be so happy go lucky. I really feel i have been let down by the medical profession, i feel like they dont care and are dragging their feet in sorting me out. its been nearly a year since iv became really poorly.They know whats wrong so why dont they do something sooner?!! Everyday im getting weaker and weaker. I cant even get up the stairs without help. Im literally like an old woman. I am so full of anger. Its my family i feel sorry for, having to watch me suffer and being unable to help. My poor children dont know whether they are coming or going. There isnt enough UK websites really to help us out and offer advice as its so rare so this only adds to my frustration. I felt a bit of hope when i found this site. Im trying to stay positive but im truly desperate for all this to end. I dont know how long it will take for an appoinment to come through, i dont know how long il have to wait for surgery, how long can they keep you waiting? Does anyone know?? I have a feeling they wont rush themselves. If ANYONE can offer me any advice on anything i would be extremely greatful. Just knowing im not alone helps but i need more support. I really want to raise awareness of this condition so i can help others and help others understand our plight! No one even knows what Cushings is! Being told we are 'Unique' DOES NOT make me feel better. Hope someone takes pity on me and replies! smile

1 like, 22 replies

22 Replies

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  • sheltielife
    sheltielife caroline31144

    Posted

    Hi Caroline,  First of all I know exactly how you feel and so must a lot of other people on this forum!  I have had uncontrolled high blood pressure since the early 80s and non of the medication worked to bring it down.  However, nobody bothered.  A year last February I was sent to a renal man, as my GP thought he would know better why my blood pressure wouldn't respond to treatment.  I don't know if you have heard of it but he thought I had pheochromocytoma and did some urine tests.  One minute my blood pressure would be sky high the  next it would be low.  The lab phoned him with the results as my noradrenaline was sky high.  He then did a cortisol check and that was also high. So, he arranged for an MIBG scan, which showed a tumour on my adrenal gland.  When he got the result of the scan it showed that a scan I had for my bowel problems 4 years previously  had shown this tumour up, but nobody mentioned it.  Do you have tremors?  Mind were awful and like you I had all the signs of Cushing's Syndrome as well, including the striea (stretch marks).  He referred me to an endocrine specialist who was horrible. He disputed the high levels and actually said that as it was so rare and the statistics that existed meant that I hadn't got it!!  I ended up walking out.  I then paid to see an endocrine specialist privately and she was just trying to prove that I hadn't got it rather than find out what was wrong.  She insisted that I hadn't got a pheo (short for pheochromocytoma) and that her job was finished.  However, she later followed up with a letter to my GP to do a dexamethasone test the short one.  That came back and my GP said it was normal. Fortunately, the day after I had another appointment to see the renal man who looked at the results and said that it was far from normal. It was within the normal range  if I hadn't taken dexamethasone, but it should have been less than 70 nmol and it was actually 465 nmol.  I took him a photo of my back that had the stretch marks and he immediately said that I also had Cushing's Syndrome and referred me to a different endocrine man. He did the longer dexamethasone test, but it took 4 months from doing the test to finding out the results!!  It did show that I had Cushing's Syndrome and so they agreed to remove the gland. When I was shown the scan my left adrenal gland was 10 times the size of the other. I had the op early May, but the care in the hospital was awful.  I was discharged by a junior doctor on a Sunday and when the surgeon went to the ward the day after and I wasn't there he couldn't believe that I had been discharged.  I phoned his secretary on the Monday, as I wasn't feeling great. He rang back in the evening and told me that I shouldn't have been discharged and that the ward I was on had a bad reputation.  After the op they were supposed to check cortisol levels after 2 or 3 days, but it wasn't done. I was put on hydrocortisone until my other gland worked for two. In the meantime the histology showed that I had hyperplasia, which is a genetic problem from birth. I couldn't believe how my whole life had been just as they said it would be.  I still hadn't had my cortisol levels checked after 6 weeks and my Cushing's symptoms were coming back and so I stopped the hydrocortisone myself, slowly reducing the dose, which made me feel a lot better, but my muscle strength was still bad. Unfortunately, at the same time my husband was diagnosed with terminal cancer. I was in an awful state. I have now had my cortisol levels checked and they are now back to normal and so my other gland is working for 2.  I am slowly getting my energy back, but it hasn't helped that I have had to do so much for my husband that I have been completely exhausted.  He is now on steroids, as the cancer has spread to his brain and caused swelling. He had lost the use of his right hand and right leg.  Since he has been on the steroids he is getting the use back. I hope that we can have a short time together to be able to enjoy the short time we have left together.  Believe me there are so many people getting an early diagnosis.  My GP is going to write it up when it's all over so that other doctors are aware of the illness and hopefully, people will start getting diagnosed earlier so that they don't have to suffer for so long. Regards Julia
    • caroline31144
      caroline31144 sheltielife

      Posted

      Thank you for replying Sheltielife.

      Firstly i want say how sorry i am to hear of your Husbands battle with Cancer, i hope the time you have left together is filled with love & happiness x

      Yes i do get tremors, i thought this was all in my mind, i do literally at times think im cracking up! Everything healthwise is failing me, just when i think things cant get any worse i get another symptom of some sort. Iv started to get what iv found out to be Hyperpigmentation on the top of my neck and back aswell as my chest and the skin at the sides of my fingers have started to become sore and infected as if i have 'Wicklows'??? Its crazy! Im in constant pain under my ribs all across my stomach and iv got pain in my ribs at the back, i get cramp in my feet all the time. My Potassium level im told are very low so maybe thats whats causing the cramps? Im just clinging on to the thought that this isnt going to be forever, surely i cant be left to suffer when theres something they can do to relieve these symptoms??!! I just want it out but above all i want to be told whether or not its Cancerous. This is whats getting to me the most. I think its cruel to leave someone worrying. No i have never heard of Pheo but then again id never heard of Cushings Syndrome and what i do know now is only what i have researched myself on the internet, no Doctors have discussed anything with me or offered any support or advice, they just said 'you have Cushings'

      In my mind im thinking 'Do they actually know how to help me? Can they help me?' I cant think straight and once i start going down the worrying route theres just no reasoning with me, im like on the border of Hysteria! I truly hope my appointment is soon and the surgery i require not long after. Il be honest, iv told my family that when i do see the Consultant im going to let rip as im just so angry! I can normally keep my feelings in check - well when i say 'normally' i mean i used to be able to before my mental health started to suffer!

      Your treatment at the hands of your Hospital/Doctors both before your diagnosis and after your surgery is nothing short of disgusting. What worries me is their attitudes, just because its a rare illness does not mean it shouldnt be taken any less serious as any other illness or disease out there!

      I worry about the symptoms coming back while they try to sort out the right level of medication Post Op but obviously this is something i dont need to think about yet. I have read about people saying they never had follow up blood tests to check their cortisol levels and had to mither for them so il have to remember that and bear it in mind that it may be the case for me. I do hope people get diagnosed sooner through more Doctors being aware of it, it really is unbelievable when you think about how its 'Brushed under the Carpet' maybe thats just my views of how its seen, maybe thats all in my mind aswell! :S

      Thank you again for your reply and support, it means alot. Take care and much love and bestwishes to you and your Husband xx

    • KarenNY
      KarenNY sheltielife

      Posted

      Julia, wow....I am so sorry to hear what you have been going through.  I had pituitary Cushing's and went through such a similar experience as you.

      i won't bore you with the details....but my Dad was diagnosed with Terminal Brain Cancer the same week I was diagnosed with the Cushing's Diseas back in 2002.

      imwas very, very sick....but he was even sicker.  The next 9 months were taking care of him.....my care was secondary.  What Hell it was.  My Dad was the best man that ever lived....as I am sure you feel the same about your Dear husband.  Wow.  I just know what you have been through....I've been there.  My father died in September of 2003........9 months after his diagnosis.

      I had surgery in March of 2003 to remove a 5mm adenoma on my pit gland.

      Like you, I had o wean of the Prednisone and hope that my gland started to work on its own again.  After 3 months, thank the Lord, my pituitary gland...although partially removed, was functioning normally.

      here I am all these years later....completely cured and feeling good.......scarred and a bit worn....but without Cushing's.

      How are you doing?  I just can't believe its been 12 years.

      It was like a lifetime ago.  I cannot believe I survived that horrific ordeal...what a nasty, nasty disease.  But, then again, brain cancer.....wow....May God Bless your husband.

      I am thinking of you and praying that you are strong.

      Take care of yourself!

      Karen xoxoxo

       

  • carolyn80777
    carolyn80777 caroline31144

    Posted

    I had a Ct scan 19 Dec and got the results begining of Jan(21/2 cm adenoma left Adrenal gland.i saw the consultant on 30th Jan. He started me on Metyrapone to lower my Cortisol levels, which was horrid as i felt really sick.I think my Cortisol was low on it.I waited till 1st april for my op, but i needed stabalizing first, as my BP was high and I had begun to get some heart problems.I had good care at Kettering General hospital and my health is greatly improved.Everyone says how much better i look and I don't feel like an old woman anymore,(although I am still grumpy!) My right adrenal gland is not working at all so I remain on 20mg hydrocortisone, which I feel may not be quite enough.i am waiting for an apt for another day curve blood test to check that out. Insomnia,depression and muscle pains are still a problem,so I have to still be patient and trust that they will improve It's good to share our experiences. I keep thinking what i could do to raise awareness (other than word of mouth) but haven't thought of anything yet. Take care xx.
    • caroline31144
      caroline31144 carolyn80777

      Posted

      Yes me to, thats how i spend my days now, thinking of what i could do to raise awareness. Im thinking of something like the 'Selfie' and 'Iced Bucket' challenge of late that has helped Cancer and Muscle Dystrophy?

      I had heard of the Metyrapone, i was going to ask the consultant about putting me on it while i await my Op - i dont think il bother now! Ha.

      I agree its good to share our experiences as it seems and feels like we only have each other. Im glad you are feeling and looking much better, it gives me hope! Xx

  • carolyn80777
    carolyn80777 caroline31144

    Posted

    Try not to worry about malignancy. I read that tumours under 4cm are usually benign.
  • sheltielife
    sheltielife caroline31144

    Posted

    Hi Caroline,  These illnesses are dreadful and made far worse by doctors not knowing enough about them.  Before my op I used to have session when I thought I was going to die and got very depressed and even thought of taking my own life, as I couldn't go on like that.  The internet is wonderful, as you can learn a lot from it.  There is a forum about pheochromacytoma, which is a  great source of knowledge. I am not allowed to send a link on this forum, but if you search for it in a search engine I'm sure you will find it.  The people on there are great, really helpful.  Like the other Caroline said they are usually benign.  Another good place to look is Dundee NHS as they have some great info on their.  The Cushing's causes really bad muscle weakness and can cause capillary fragility.  I just hope that the doctors start listening to you.  You really have to pester the life out of them to get them to listen. I was lucky that I had a renal man that knew more than the endocrine people and without him I would never have got to have the op.  Good luck Julia
    • caroline31144
      caroline31144 sheltielife

      Posted

      Thank you. Yes i will have a look. Im currently trying to put together a whole load of questions to 'batter' my Consultant with when he gets round to sending me an appointment. I want to be in the know about absolutely everything before i go, i want him to think he cant be pulling the wool over my eyes!!! To be honest, i bet i already know more about Cushings than he does by the way he's carried on and the things he has said! He WILL NOT be dismissing me and trivialising my plight! Il hound the life out of him if need be!! I feel sorry for him! Ha

      Yes the muscle weakness is shocking - along with the memory loss. Have you suffered memory problems? I literally have to write everything down! My skin is so thin everywhere, you can see my veins. I cant even touch the front of my legs, its like im touching pure bone and the bruises.... well, dont even get me started! rolleyes xx

  • dambudzo
    dambudzo caroline31144

    Posted

    Hi Caroline

    You might find something useful on the pituitary foundation website. They have ideas for raising awareness and fundraising etc. Also some useful information on Cushings. 

    best wishes

  • sheltielife
    sheltielife caroline31144

    Posted

    Hi Caroline, Yes, my skin was awful, always peeling and bruising easily.  Plus, like you I have to write things down to remind me, as I forget things so easily and end up walking miles because I have forgetten to get something etc. etc.  I also have vascular problems in that the blood is getting to my feet and legs but not getting back. My feet and legs are really red, burning and very painful.  I think this is due to uncontrolled blood pressure for all those years.  The renal man agrees with me and has recommended a vascular surgeon. These days they can put stents in your legs, like they do in hearts. I go to see him on Thursday. I am paying private to see him to speed things up. I told the renal man that I couldn't pay for tests or treatment and he said no worries they would sort it out on the NHS.  I also found out that the vascular man was the renal man's best man and school friend and he is going to speak to him before I go so that he knows what's been going on.  I smoke, which doesn't help, but with the situation I am in there is no way I can give up. The GPs have told me that they won't do anything until I stop smoking, but the renal man said that the vascular surgeon will understand why I can't stop smoking and that he will stil do anything that's needed.
    • caroline31144
      caroline31144 sheltielife

      Posted

      Let me know how you get on on thursday after your appointment. I was that desperate myself that i thought about getting a loan to pay private so i could end this nightmare! I truly believe my consultant doesnt give a stuff. X
  • lorraine30848
    lorraine30848 caroline31144

    Posted

    My name is Lorraine and I'm 47.Wow,this is the best thing ever to read, you and sheltielife's stories....I have been feeling ill for ( 5 long years now ) and I continued to go to my doctors every month with my symptoms such as...weakness,weight gain(35 pounds)round red face,bruising with blood blisters on my arms,bleed so easy,feeling flu like everyday but worse.And This is what heard back from the doctor....you need to see the G.I. doctor(that you have I.B.S,and that I need to execise,that it's fat,or it's the vodka or it's the pain meds that I'm on(I've had 5 back sugerys)and so on....

       I also have wanted to take my life infact I think about it everyday.

      So after more than 5 years of this sh*t my eye sight went in my right eye(Feb. 2014) and went to the eye doctor and he sent me for an mri & scat scan and come to find out I had a huge tumer in my puitary gland and went to Boston and this surgent actually opened a operating room for me to operate,(this was in April of 2014)anyhow he was unable to remove all of it.

      The next week after the surgery I felt like a million dollars(even my kids said"we got our mom back"but then I crashed again!!!!

        I just don't know anymore,it's like I'm watching everyone else work,going places.doing things and I'm too achy, too weak to do anything.....I have so much more to tell you ....Can't wait to hear back from you,Lorraine

    • caroline31144
      caroline31144 lorraine30848

      Posted

      Hi Lorraine, Well iv now had my surgery. I had been meaning to let everyone know but its been one thing after another. I had my surgery on the 12th September 2014 after taking myself to A&E as i had become so weak i couldnt even walk, this was on the 9th sep. They admitted me into hospital and when my consultant seen me his words were 'it has ravaged you like a cancer' He got the Surgeon to come and see me and he put me down as urgent and told me i could have my Operation on the 12th sep. I was so happy i cried because i thought i was on the road to recovery. I was in theatre for nearly four hours. I was uncomfortable after surgery obviously but the worst pain was that of trapped wind in my shoulder! Anyhow, 2 hrs after my surgery one of my wounds started bleeding, this went on all night til 6am the next morning when they told me i had to go back to theatre as they had 'caught' a vein and it needed cauterising. That all went well and i was allowed home 3 days later with 20g of Hydrocortisol to take daily. I was also told to go to my Doctors surgery every week for Blood Pressure checks and blood tests as my levels in nearly everything was quite bad due to how this horrible illness had a hold of me. I had a follow up appointment 4wks after my surgery and i told them that i didnt feel any better, that i had put on over a stone and a half since surgery even though i was only eating between 1000 - 1200 cals a day and i was swollen all over. He examined me and said i was to slowly reduce my Hydrocortisone by 5mg a week until my next appointment so i could be retested for another tumour. I did this and when i got down to the last 5mg i became ill with pains in every joint from head to toe. I had to go Hospital and was told i was Adrenal insufficient so iv had to up my meds again to 10mg daily. Im due back on monday 3rd November. 

      I have not felt any better since surgery, im weak, have dizzy spells, swollen all over, itching from head to toe, tearful and feel very restless especially at night.

      I was told early on in my diagnosis that it could take between 6-12months to get better, i thought that was the worst it could be. I honestly thought id be back to my old self by christmas but its nearly november now and i dont hold out much hope, infact i feel weaker now than before surgery! My poor children dont know wether they are coming or going, my 8yr old said all she wants is for mummy to smile again. I really try to hide my misery but it just overtakes. I really feel im doomed to this forever and im never going to get better. Maybe i would feel better if i came face to face with a Cushings "victim'?

      My consultant told me to expect Arthritis next!! What the hell!! My skin is very dry with spots under the skin, he said my body is trying to re adjust and il get plenty more health complaints! When is it going to end?? Also i had a blood test 6 days ago that shown my right Adrenal Gland hasnt 'woken up' yet so God only knows how long il be on my meds for. I just feel utterly miserable, i often wonder is the illness a death sentence? Xxxx

  • carolyn80777
    carolyn80777 caroline31144

    Posted

    H Caroline d Lorraine, I hadmy left Adrenal removed in April I am much better than before the op,but recovery is much slower than I would like.My main problem is insomnia and depression,still forgetful and brain fog. I also have nerve damage in my arms, which remains after surgery in May 13. I am also still on Hydrocortisone 20mg. My Hydrocortisone day curve test showed my right adrenal is still not producing cortisol, but my Renin levels are ok, so there is some hope of it waking up. So how long "full" recovery will take I don't know. I didn't realise it would still be nearly as tough post op.So I understand some of what you are going through. Take care of yourselves Carolyn.
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