High cortisol, look cushingoid, no diagnosis

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hi I'm a 19 year old female. For about 5 months my Dr has been running tests on me. My cortisol is high and I have osteomalacia I've seen an endocrinologist and had the Dex test and 24 hour urine. My dex test was normal (not adrenal Tumor) but my 24hour urine is still not back. I have gain about 5stone in 1 year, am covered in stria, can't sleep, am in constant pain and I haven't been to college in 4 months. My Dr has signed me off for another 6 months and I am housebound. I am now getting manic attacks where I am disassociated and incoherent and also have terrible migraines and auras. I don't know what to do next as I have reached my limit both mentally and physically. Do I have cushings? What is wrong with me? Please help 

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  • Posted

    I am so very, very sorry that you are feeling so unwell.  It breaks my heart!

    I do not know if you have Cushing's or not.  It is such a complicated disease.

    our bodies are complex as is all our systems, including the endocrine system.

    I suffered for over a decade with many of the pains you are suffering.  It was brutal.  Trying to cope with life and work was horrible for so long.

    So, I know how you feel......so many people will never understand what you or I have been through, and are still going through.

    I hope and pray that you have the strength enough to keep fighting for a cure for yourself.

    You are very smart to come on the Internet to seek help.

    i had my pituitary tumor removed in 2003 and am feeling a billion and one times better.  I am praying the same for you.

    please, just know, that there is someone out here thinking and really, really rooting for you.

    Take care of yourself and keep seeking answers!

     

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    • Posted

      Thanks. I have come on these websites before but didn't want to talk about cushings before I was diagnosed as I thought it would annoy others but now my symptoms have worsened I feel I need the support. Wow over a decade! That's crazy. I'm glad they finally found out what was happening. Part of me hopes it is cushings just so they can fix it and I can get better. But the other part of me is hoping it's not as its a terrifying thing to have. Take care of yourself too and thanks for your reply
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    • Posted

      Oh, I was tickled pink when I got diagnosed!!! I thought I was going crazy....I thought that all my ailments were my fault or that this is how it feels to get old and fat.

      I also had a lot of anger that I was not diagnosed sooner.

      Please do not hesitate to reach out for help, info, whatever you need.

      i belonged to a forum called Cushing's Help'. It was a Godsend for me back in 2002.  I lived at that website and read everything I could to learn and understand.  Everyone there did the same thing....all us Cushies were completely dependent on each other. That board was the only way for me to get through everything.

      Si, please realize that you must.....MUST seek all the answers you can for yourself.  

      You will not be bothering anyone!  Ask away. 

      If you want to go to the website I am talking about....I highly recommend it.

      you can do a search, or let me know if you need help finding it.

      i think it is a bit more active then this board....for Cushing's Disease anyway.

      let me know.

       

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    • Posted

      I'm so glad you've said that. I feel I'm going crazy like my mind has gone. I'll defiantly check out the site. 
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    • Posted

      Does it have the seven dwarves on it? If so it looks like it's down for maintenance 
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  • Posted

    Hi Maisymona,  Welcomme to our special website. where you can ask those who have been throught the same thing.  When you get you 24 hour wee test back things should be clearer and hopefully your Endo will be able to explain.  I had not heard of your Osteomalacia.  I have Osteopenia which is what you have before osteoporosis.  I am so sorry you are in such pain.  Hang in there.  Once you have a diagnosis things will get easier.  The Pit Gland controls so much of our hormones and affects us each in different way.  Keep in touch. 
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    • Posted

      Osteomalacia is the adult term for rickets. So severe vitamin d defficiency. It makes the bones soft instead of hard. I just hope Drs find out what's wrong soon as my head is getting really bad. Migraines and blurred vision and freak out episodes where I'm not in control. Very scary. Oh no I hope you don't get osteoporosis. Is there anything you can do to treat it? 
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  • Posted

    So sorry to hear you are suffering so.I am also a Cushy,having had my pituitary tumour removed in 1997,after 5 years of fluctuating symptoms.

    Hang in there.As Vicky said,things should be much clearer for your Endo to diagnose you once all results are back.

    Things were very different in 1997,with no computer,smartphones,sites and forums like this.It was scary and lonely.Keep in touch.Gill

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    • Posted

      Wow that must have been hard. I just hope I get a diagnosis soon. I've been told by 3 medical people now that I look cushings I have almost all of the symptoms yet most of my bloods and text are normal so I feel as if I will never know what's going on. My dex test came back normal but my dr explained all that does is rule out arenal tumours not pituarty and he said from the start that's what he thinks I have. It's very lonely for me my parents and partner are there for support but no friends 
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  • Posted

    I'm sorry you are feeling so ill, what test did you have initially that said you had high cortisol?
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    • Posted

      I hope so. My parents are coming with me to the Drs on Monday and said they will pay for an Mri so hopefully the Drs will agree. I might also get my urine results Monday if not Tuesday. I will update you when I know 
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    • Posted

      Cushing's is complicated as is the testing to find out the source.

      The MRI is often something that is not done as soon as you would expect. 

      If they do not approve the MRI right away....just do not be surprised.

      many people have pituitary tumors and do not have Cushing's.

      So, the endocrinologist and neurosurgeon have to be very careful not to jump to any conclusions based on an MRI alone.

      Cushings Disease can be caused by ectopic tumors and even just a cluster of cells that produce ACTH.

      But....if they continue to do all the other tests, along with the MRI, that will be a good sign that they know what they are doing.

      I hope I am making sense. .....it is hard to explain.

      Please keep us up to date about your doctor's appointment Monday.

      thank goodness you gave your family!!

      My family and co-workers were wonderful throughout my struggle and recovery.

      But, as awesome as they were.......they really never could understand what I was going through. People would just kind of listen and feel bad but just not 'get it'.

      Only another Cushie really understands.

       

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    • Posted

      How right you are.Even after 18 years many of my family don't understand what I've been and going through.Being on replacement steroids,picking up bugs easily,and not being able to recover from them easily,is a nightmare.You can't help accidentally catching something,but would prefer not to subject yourself to illnesses knowingly,like visiting someone with a cold/flu or sickness bug,and would not invite it into your own home.Sickness and/or diarrhoea being the big problems,having to take and keep down a number of vital medications.
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    • Posted

      I was never able to have the MRI scan.They had to make do with a CT,which isn't so detailed.I have a history of DVTs,and have a permanent metal filter to stop movement of blood clots to vital organs.This could be dislodged in an MRI.It would probably mess up their machine too! The tumour was still located,but I needed a specialist surgeon to remove it,having not had the help of the MRI.
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    • Posted

      when I started this discussion I thought I might find one other Chushy.  I am so glad (you know what I mean) to have found so many others.  As everyone says there is no-one else who can understand what we go through.  Having been seriously ill for 3 years with no giagnosis and then having a post op infection I got a couple of cards.  2 years ago I got breast cancer and the messages, cards, flowers etc flooded in.  I couldn't say to anyone that the Cancer didn't hurt, it was just a lump and that the symptoms of Cushings were far worse.  I mean no offence just that we do suffer a  lot and for a long time.  Best to all those waiting for a diagnosis and love to all that have been trough and know that the light at the end of the tunnel was not an oncoming train!
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    • Posted

      Wow, gill, so sorry that you have to take all the replacement meds.  That must be very, very difficult to regulate.  I was very lucky that my pituitary gland started working on its own, completely, after about 3 months.  

      I weaned aggressively off of the Prednisone because I was anxious to get rid of my Cushing's symptoms.

      It was a painful recovery for about 1.5 years.  My body was so used to having an enormous amount of Cortisol constantly running through it.

      Every bone and muscle in my body was so very stiff and sore for over a year.  And the nausea was just terrible.  

      It has to be so hard on you that people around you don't understand.

      I think, for me, because I was an extremely strong, athletic person before getting ill, my family didn't understand that I was so very weak.

      It really breaks my heart when I try to explain to people about Cushing's and they kind of look at me like I alphabet three heads.  They cannot comprehend it.

      Dont you think that Cushing's survivors learn to be very empathetic people because of their ordeal?

      i hope you are feeling well today. I am so sorry for you. Take care of yourself....be good to yourself!  Try to not worry what others think.  Though, it's got ypto be so frustrating!

      I am thinking about you and Happy Mother's Day from New York!!

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    • Posted

      (((((Vicky)))))

      So, so sorry to hear about your double whammy!  Wow, you've been through a lot!  

      Yea, cancer is a bit more straight forward and very common.  Cushing's is so complicated and effects a hundred different things in our body. The hormones involved are so intricate....most people don't have a clue what there pituitary gland even does or is for.

      I certainly didn't know before being diagnosed.

      Cushing's also mimics a ton of other illnesses.  I went to like 10 doctors for separate symptoms and nobody connected the dots for over 10 years.

      Also, people don't really 'see' our pain and suffering.  They see the fat...that's for sure!  But they don't see the diabetes and you know the rest!

      Well, I understand what you've been through and what it was like.  So, don't feel too lonely over there.  I just hope you are feeling much better these days.

      sometimes I have to force myself to remember how bad it was and how sick and horrifically weak I was.  When I don remember.....I feel such a sadness and slight anger over it.

      but, mostly, I thank God for modern medicine and that I was cured.

      I think that we have to be good to ourselves and to not be too hard on ourselves.

      but, even to this day....12 years after surgery, I do not think that my family.....my loving family.....realizes that I am not as strong as they think I am.

      Cushing's Disease burnt my body, my brain, and my emotions pretty badly.

      Oh well.  C'est La Vie.

      Have a wonderful Sunday and Happy Mother's Day Vicky!

      May God bless you!!

       

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    • Posted

      Thankyou Karen.Yes,had to go in for tests,off all medication,on a regular basis for 2 years,but my pituitary never kicked back in.Years down the line,I became very ill again,and was told I'd run out of growth hormone,and my thyroid had become underactive.Not warned this could happen! So now have to take replacement steroids,thyroxine,growth hormone injections,desmopressin for diabetes insipidus,and calcium tablets.Consequently also on antidepressants,to keep me on a level keel,2 meds for IBS,and acid reflux tablets.Also on lifetime of Warfarin,as have Factor V Leiden,and had 3 DVTs.Added to that,prescription painkillers (very limited choice,as most interact with Warfarin)
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    • Posted

      That is the bit they don't tell you isn't it.  I too am on Hydrocortisone, Ad Cal, Desmopressin, Levothyroxine and pain killers and antidepresants and sleeping tablets.  But I don't have the other problems that you have.  I was given no idea that I would need tablets.  I go back to see my Rndo in June so will have bloods etc (at my suggestion) before that. I would love to know why some people get Cushings.
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