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Finally waiting for diagnosis after 2 years of suffering

Posted , 14 users are following.

toni49036
toni49036

Hi

Can I ask how many of you had all the symptoms of Cushing's?  I've been unwell for 2 years and after an adrenal adenoma was found over a year ago I have gone up 4 dress sizes.  The operation to remove the adrenal gland was already in the pipeline but after having swelling in my legs recentIy, I got onto my consultant and made such a noise that I got to see him urgently and after having read up on this condition I suggested it to him.  I am finally getting the correct tests done but initially they poo pooed the idea because I don't have all of the symptoms.  I have massive weight gain that continues despite me not eating much at all, sores or bites that never heal, fatigue which means that some days I cannot get out of bed and pain in my side (where the adrenal adenoma is) and across my back.  I am so close to this being diagnosed but I can tell you it has nearly destroyed me.  Mentally and physically I am an empty shell.  After reading your messages, I finally have hope that one day, very soon, I will be back to my old self.  The one who was a size 12 and at the gym or running most days, and more importantly, able to do normal everyday things, including getting dressed and being able to put on my own socks without struggling.

I would be so interest to hear what symptoms everyone had and anything else you think would be helpful.

Many thanks

 

1 like, 34 replies

34 Replies

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  • holli67959
    holli67959 toni49036

    Posted

    I had Cushing’s Syndrome for two years before it was diagnosed. I had my left adrenal removed in Oct & went on cortisol replacement therapy right away. I actually feel worse two months on & just want to feel better again. Mostly I am tired & my muscles ache terribly. I am sincerely hoping I start to feel human again soon.

    • patty44596
      patty44596 holli67959

      Posted

      Holli, Im right there with you although mine was pituitary. My intense muscle aches started at 3 months. Im now 6 mo post op and it feels that I will never feel better. I had the pleasure of talking to two women this week that said their body aches were intense too. The were both past the 1 year mark and assured me it will get better.
    • vicky61456
      vicky61456 holli67959

      Posted

      Hi Holli,  I am so glad that you finally had your op. Like Patty mine was Pituitary.  I am now 3 years down the line and do feel fine again.  Your body has to have time to mend itself after the years of Cortisol overdose.  Give it time and things will improve I promise you.  Are you seeing your Endo regularly, if so do tell him/her whatever symptoms or pain you have.  They may be able to help and need to know anyway so that they have more understanding of this awful disease.  Let us know how you get on.
    • vicky61456
      vicky61456 patty44596

      Posted

      Hi Patty,  I am intrigued that you were able to meet up with 2 Cushy's.  I am also able to but thoiught that was rare.  If they have advice or can help any of us here it would be great if they could join the forum.  The more we all learn what the other has suffered the better understanding we have.

  • courtnay26
    courtnay26 toni49036

    Posted

    Plain and simple

    Cushing causes the kind of weight gain

    You go to the gym everyday (or some days)

    Trying to avoid

    I can't tell you how many rude comments

    About not eating well enough , etc...

    I've got

    Funny thing is ... I'm kind of a health junkie

    All in all though, it is a serious condition

    and I would tell others who have it

    Not to worry about the weight

    And try to get better

    The most important thing is getting a good surgeon

  • patty44596
    patty44596 toni49036

    Posted

    Vicki, You may know about this site already but I just found a support group via Facebook.  On there I found people that lived very close to me.  They are from all over just like on this site.  It's only people that have or had Cushings.  So much information from people that are going through the same.  The Facebook link is Cushing's Recovery - Don't Stop Believing.  You will be asked to join by answering 3 questions.

  • vicky_65919
    vicky_65919 toni49036

    Posted

    Hi Toni. I had everything except the diabetes. It’s funny that when they figured out what I had and I looked at the list of symptoms it was so obvious what I had. I figure I had it for about 3 years if I think back to the symptoms. I am now 7 months post op from an adrenalectomy. After 2 months weight started going off. You will have some funky symptoms that appear after surgery but slowly you get better. The worst part of recovery is achy muscles. Still struggling with that. 
  • shonda9195
    shonda9195 toni49036

    Posted

    Hi, I’ve been suffering for 10+ years!  In 2009 I was dx with HPA axis disorder.  Weight gain, moon face, Buffalo hump, skin acne, muscle weakness so bad I was in a wheel chair.  I got neuropathy really bad and then a few yrs later got diabetes.  I think this is all related to Cushings.  At that time they said I had adrenal insufficiency.

    This past year I got several kidney stone.  I still have a large one.  When I saw that you have pain on your side that goes to your back!!  I have that!  Always thought it was my kidney stone.  

    Just wanted to know how they first caught the ‘tumor’. On your adrenals?

    My acth is low, saliva is highly at midnight and waiting on 24 hr urine.

    Curious..and thx

    Shonda 

    • vicky61456
      vicky61456 shonda9195

      Posted

      I did not have adrenal gland problems, mine was in the Pituitary Gland.  I hope that some of the others on the Forum who did have Adrenal Cushings will reply.  I have had kidney stones in the past but that was years ago before Cushings was really diagnosed.  I also had Gallbladder problems.  I am trying to find a common denominator in us Cushies so that more research can be done.  Good luck, you deserve a proper diagnosis after all you have been through.  Cushings is a truly awful thing and we are all different which makes diagnosi hard.  Also most G.P.'s will not have seena Cushings patient before and and are scared and reluctant to commit themselves.  Good luck and let us know how you get on.

    • courtnay26
      courtnay26 vicky61456

      Posted

      hi Vicky

      your probably right about the gallbladder thing

      I hardly ever drink, eat fairly healthy

      etc... but had/have gallbladder issues

      of course doctors will just think

      you eat too much cheesecake though

    • courtnay26
      courtnay26 shonda9195

      Posted

      Hi Shonda

      Your symptoms are similar to min

      Since you have adrenal insufficiency

      They should be giving you an mri

      For your pituitary

      You have secondary adrenal insufficiency

      That is proven with your low acth

    • courtnay26
      courtnay26

      Posted

      Oh nevermind

      I think you have to have low cortisol

      For adrenal insufficiency, I'm surprised

      The doctors said you had Adrenal insufficiency

      With high cortisol

  • maria011886
    maria011886 toni49036

    Posted

    Hi beautiful people!! 

    I've been diagnosed with Cushing. I dont know for how long I 've had it for. But the breakthrough was this past 9 months when I went from 57 kg to 75kg suddenly I experienced Depression and anxiety which I never had before. and simply felt my brain was disconnected of my body like a switch off and then the hump and I have had hirsutism for the last 2 years but I always thought it was my contraceptive pills. I also had the moon face, the strias, the swelling of ankles, imsonia, fatigue, muscle weakness and every symptom was checkboxed by my endocrinologist. 

    Anyway my surgery is next week. Dr says the recovery after the surgery is super fast and I would feel "me"again after 6 months. I would appreciate if  you can give me advice for prior/post procedure. specially if you were able to return to normal excercise routine like running which is what I used to do before but stopped because of the pain in my joints.

    Any recommendations for dieting after the surgery? Of course weight gain is striking my mind and I'd love to loose all the weight as soon as possible but in a healthy way. Thank you so much for any advice/recommendation.  

    • courtnay26
      courtnay26 maria011886

      Posted

      Your really not at that high a weight , especially for Cushings

      so I hope you'll feel good enough after surgery to

      Do your regular activity

      I would just avoid swimming for a while

      Good luck

    • vicky61456
      vicky61456 maria011886

      Posted

      Hi Maria, best of luck with your surgery.  Really you should not diet after your surgery.  You should lose a fair bit of weight in the first month then gradually drop the rest over the next few months.  Your Endo will give you guidelines.  I did not do any special exercising after my op but I lost 1 stone within weeks and then the rest over the next 6-9 months.  I am now back to my normal weight and have not put on any excess weight in the years since I had my op.  Please let us know how you get on.
    • Coc87
      Coc87 vicky61456

      Posted

      Vicky I’m actually so releaved reading ur comment just now. Cause I did lose weight initially post surgery but then it just stopped on the scales an goes up an down a few pounds an I’m now into my 5th month post op an I just felt cause I wasn’t losin more that dam Cushing’s has never went away. I know I’ve lost fluid an inches an that Cushie head but then sometimes I look in mirror an think “nope I can see the cushie head coming back” think I’m jus so paranoid. But u say 6-9 months an it started to drop. Well I feel more reassured now. Plus I still haven’t had a period an the bp isn’t down enough for my liking an I still would get palpations the odd time an still feel my hair falling out more than it should. But mayb I’m jus paranoid. I don’t see my Endo again till May/June time. Jus isn’t an easy journey, better than what it was but I guess it just all takes time doesn’t it. X
    • vicky61456
      vicky61456 Coc87

      Posted

      Hi Sadly it does take a long time and each of us are different.  Your body has had a massive shock and is bound to take time to recover.  Before you see your Endo again try to write down all the problems you have.  That way you will remember to ask her what is worrying you.  It is also good if someone can go with you as there is so much to take in.  I know it is hard but be patient.  Take care and let us know how you get on with your Endo.
    • melissa96474
      melissa96474 maria011886

      Posted

      You sound more like me. Did your anxiety and depression resolve or did you have to go on meds, counseling for that? i am 13 months post op Tapering steroids at 15 mg daily right now. the emotional instability is the worse and i dont hear people with those symptoms alot. thank you.

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