Just been diagnosed with Cushing's

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Hi all, 

I'm totally new to all this but I was diagnosed with Cushing's disease last Sunday and am now awaiting a date to have a few more tests and then to have the tumour on my pituitary gland removed. I'm 28 years old and I think I've had it a while (3yrs maybe?) but didn't bother going to the doctors cause I thought the weight gain and bruising etc was just down to probably drinking too much wine and generally being clumsy and walking into things! I've put on about three stone (gone from a 10 to a 16 - I'm 5ft4 and for me, that's the worst bit (I don't sleep well either but it's the feeling fat and ugly that really hurts.) I'm really nervous about the surgery, mainly the recovery as I've heard it's pretty bloody tough but the only thing that's keeping me going is the weight loss. I SO HOPE I LOSE THE WEIGHT because I work in the music industry which, isn't exactly the most compassionate and caring place to be when it comes to looks etc and It's stopped me from going to meetings and working with people I haven't seen for a year or two as I think they just think I've become a whale!! I don't know the date of my surgery but I'm soooooooo desperate for this weight to go!!!

I know everyone is different but how long will it take?! I don't eat badly!

XXXX

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13 Replies

  • Posted

    Hi Sophie. You’ve hit the nail on the head with ur last line, everyone is different. I’m currently post op adrenal gland. An I’ve had a rough time, I’ve lost some weight, but then I’m not movin as much so that explains why I haven’t lost more. But when u feel well An fit to exercise or do what ever it is u do to keep fit im sure the weight will come off. An if u eat well, then ur wining already. I know exactly how  u feel cause it the weight that bothers me I went from a 10/12 to 20.  But ur body is sick An when it’s well again you’ll get urself back. Don’t b hard on urself. It not a straightforward syndrome/disease. Good luck with ur tests. 
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  • Posted

    Hi Camilla, Welcome to the forum.  As you say we are all different and respond to treatment in different ways but the weight loss post surgery seems your biggest worry. Before I was diagnosed with Cushings (which I think I have had for about 5 years before) I was a size 12 model.  I gained 4 stone in weight and could not understand why.  After I had the tumour removed from the Pituitary Gland and once I had recovered from the op itself I lost 1 stone very rapidly and after that it took about another 6 months-1 year for me to return to my size 12 clothes again.  I have maintained that weight for 3 years now.  The weight gain is caused by the excess Cortisol produced by the tumour and anything you eat is drawn to release fat into your stomach area.  Hence the stretch marks etc.  Once your body has recovered from the overdose of Cortisol it will re-establish its former behaviour.  Please don't worry you will lose the weight just be a little bit more patient.  You are on your way now and this time next year you will be up and running and the music industry won't know what's hit it.  When I started this forum some years ago it was because I wanted honest answers from people who had experienced this horrid disease.  Ask whatever you like of us but expect us all to be honest with you.  Please let us know how you get on.

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  • Posted

    Hi all! 

    Thanks for replying so rapidly, I really appreciate it! 

    You know the stretch marks...I have those at the moment, will they go or do I have those for life? Do you think bio oil/moisturiser will help them after surgery? I know it’s a silly question etc but just wondered?! 

    Thanks! 

    Xxxx

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  • Posted

    Hi Bio Oil is supposed to be excellent and many people use it.  I would just check with your Endo Nurse before you start, maybe you can start now?  I had so many stretch anyway from having my children that they all seem to be the same.  You are young so yours should go quickly.  Do check though, there are so many things that you cannot do or use with Cushings.  Good luck!
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    • Posted

      Ok thank you! Will try and check! I haven’t been give my been given any information about what I can or can’t do/use with Cushing’s...any pointers? 

      Many thanks!’

      Xxxx

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  • Posted

    Hi,  I had my tumour removed a few years ago now but I often find that weird things are related to Cushings, for example you should not drink hibiscus tea, use decongestants etc.  Ring your Endo or Nurse and just check.  It is such a complicated disease that new things are being found every day.  I have had very weak nails that split and when I looked up why one of the reasons could be Cushings.  Maybe the others will have some ideas.  Don't worry if we don't all answer at the same time, we are all over the world.  I am in the UK.

      

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    • Posted

      THANks Vicky! 

      I’m in the UK too, London to be precise which is great for the level of surgeons etc but awful for the waiting times! 

      Oddly..my nails split and are super dry too! 

      Xx

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  • Posted

    I have been trying coconut oil or fat which is supposed to be a great re-hydrator.  One other thing may be worth mentioning.  Often after the op you may be diagnosed with Diabetes Insipidus.  This has nothing to do with sugar and is not a well known form of diabetes.  It basically means you wee too much!  It might be worth drinking a bit more water to make sure that you do not get dehydrated!
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    • Posted

      Ok great thanks! Do you know how long the diabetes lasts? So is the only side effect to that Weeing a lot?! Xx
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    • Posted

      I was getting up about 4 or 5 times a night so I was tested for Diabetes Insipidus which is not very well known.  I now take a tablet called Desmopressim which stops me needing to wee in the night.  I need to drink a lot in the day and carry a card that is if I have to go into A & E , that I must not get dehydrated.  I also have a card that I can show if I need the loo in a shop without a public loo!  I am not sure if any of the others have this or if it just some of us.  You may not even get it.  I assume I will be on it for a while yet but havent had a medication consultation yet this year.  If anyone else out there does have this could they say as it would be interesting to know if you have it.

       

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    • Posted

      Hi. Soz I think I called u Sophie earlier dunno where I got that. Sorry. I have those stretch marks also, my endo told me they will fade in time. I would use bio oil when I have the energy An can b bothered to apply it but dunno if it’ll help. Just depends on ur skin type an different things work for different people. I fortunately didn’t have problem with my nails. My skin was super dry tho An then post surgery even worse An rashes. I live in Northern Ireland so I’m thinkn a lot of our tests An treatments would b similar. If u need any info happy to help. Cause I know we might not all b the same but it was great on here when people even said of their experiences. I find it helped. 
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  • Posted

    Honestly,

    I know what your going through

    But the most important thing is to remain

    Healthy not slim

    Anyways, i hope your surgery goes well

    And you have good surgeons

    As a good surgeon or neurosurgeon

    Is so important

    Lots of luck

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