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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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  • courtnay26
    courtnay26 toni49036

    Posted

    Hi

    I totally get your frustration

    I have basically had to diagnose myself

    But the doctors won't listen to me

    It is ridiculous how much weight I have gained

    Let alone all the comments from people who are suppose to care about you

    All I can say is don't worry about the weight

    Just try to stay healthy

    Lots of luck

  • vicky61456
    vicky61456 toni49036

    Posted

    Hi Toni,  Please do not let this disease and its symptoms get you down.  It is a long hard road to be diagnose with Cushings.  No two people are the same and most G.P.s have never seen a patient with it before.  I went from a 26£ waist to a 45" waist.  I tried every diet but nothing helped.  That was because of the Cushings, no matter what you eat or don't eat it goes straight to fat so you may as well enjoy your Xmas grub!  I ha no moon face but I did have the red stratch mark, poor hair condition, excessive sweating and hairiness, aching in all limbs, headaches.  Once and if you are diagnosed and have the necessary tests and operation you WILL start to feel better.  Your weight will start to go down and you will be able to slowly return to your old self and life.  I had no problem with my adrenal glands or anything like that so I cannot help you there.  You are nearly there.  Be strong and keep us up to date.  There is always some-one her to answer you.

  • vicky61456
    vicky61456 toni49036

    Posted

    Hi Toni.  You are so nearly there.  I did not have any problems with my adrenal glands.  I did have the huge weight gain.  Ended up with a 45" waist and had to wear maternity clothes.  Dieting is useless because however much you eat it all goes to fat.  You might as well enjoy your Christmas lunch!  No 2 of us have exactly the same symptoms.  I had no moon face but did have red stretch marks, excessive sweating and hairiness, tired limbs and headaches.  But once you are diagnosed and have the necessary op you will soon start to feel like your old self.  It takes time but the weight starts to drop off quickly at first and then slows down to a more normal loss.  We are always here and just keep your chin up and it will soon be over.  Please let us know how you get on.

  • Annie2012
    Annie2012 toni49036

    Posted

    Hi Toni ,

    I had a the same with my left adrenal gland over 6 years ago.   After massive weight gain and despite swimming every morning I went from size 8 to 14/16 .

    I was finally diagnosed by a clued up consultant when I went for a hospital procedure as an outpatient because my blood pressure was so high and they took me in for tests . 

    Following the op to remove the adrenal gland the weight just dropped off . I was given cortisone as my remaining gland had ‘gone to sleep’ because the other one had been so overactive and it took a about 6 months to taper off once it woke up.  

    The good news is I felt well and returned to normal so quickly and got my normal life back.  

    You feel hideous I know and I think the psychological effects are often overlooked but please stay strong as there can be a light at the end of the tunnel of which I’m proof.

    Keep on at your consultants to get that op ASAP x 

    • Coc87
      Coc87 Annie2012

      Posted

      Annie Im post op two weeks left adrenalectomy an having pretty rough time. 

      How long after did u start to lose weight? I’ve went size 10/12 to 20 😞 an when did your blood pressure go down? Did u even feel sick? Was ur back still sore for long after? 

      Sorry for all the questions! I’ve been told I’ll feel worse after surgery which I do. So they weren’t lien. An my face has badly broke out I dunno whether I was allergic to a drug I’d never had before or is it hormonal? 

      Any advice would be much appreciated! Thank u 

    • toni49036
      toni49036 Annie2012

      Posted

      Hi Annie, 

      Thank you for your message. It's good to hear that you're ok now.  I cannot wait for the diagnosis and to feel ok again.  

      Merry Christmas

      Much Love x

    • vicky61456
      vicky61456 toni49036

      Posted

      Merry Christmas to all those on the Forum.  Thanks so much to ALL of you for your input and help.  Let's hope that 2018 will bring good health to those of us who have been diagnosed and answers for those still waiting.

    • Annie2012
      Annie2012 Coc87

      Posted

      Hi and so sorry it’s taken so long to come back to you but unfortunately I’m not great with my iPhone and didn’t know how to find replies .  I’m really hoping you are feeling better 2 months down the road 

      It took me a while to recover fully but my blood pressure and weight returned to normal .  

      I would love to hear from you how you are doing now and will try and get up to speed with my iPhone lol X

    • Coc87
      Coc87 Annie2012

      Posted

      Aww thank u for replying, I sometimes forget to look at this forum too. I’m finally feelin a bit better but oh my goodness it has been rough. Was very nauesated for a long time. My blood pressure is still a bit over the place An my pulse can still b quite rapid. An I haven’t lost much weight which disapoints me. But then I haven’t been movin much? But my face has de swelled an I’ve noticed little changes. I just would love to lose more weight an bp An pulse to regulate. But I’m only 8weeks post op so I can’t expect loads can I? X
    • vicky61456
      vicky61456 Coc87

      Posted

      You are doing really well.  Give it time for your body to get to grips again!  We have a new lady Camilla who has asked for info.  I have replied but you may have something to add.  Take care.

       

    • Coc87
      Coc87 vicky61456

      Posted

      Ach thank u Vicky. Did ur bp or purse take long to go down An settle? I’m kinda lookin at it that my body is in the dt’s An it jus gettin use to not havin high dose of steriods anymore. I’ll take a look an see if I can. Thank u. 
    • Annie2012
      Annie2012 Coc87

      Posted

      Me again attempting to be an IT whizz on the laptop this time check me out smile

      It still sounds early days.  I'm hoping you are taking cortisol replacement as your remaining adrenal gland effectively goes to sleep and you therefore go from one extreme to another . I was on cortisol for 9 months after gradually tapering off until my remaining adrenal started functioning properly.

      ?My BP returned to normal approx. 7 months post-op when I was able to come off all bp meds.

      ?I know it's a lengthy process & disheartening at times but hopefully you're coming out the other side  now - I'm post-op 6 years this month (wow, where did all that time go) and have returned to normal (hmmm friends may disagree with that statement lol rolleyes)

      ?It really is a horrendous (didn't want to swear ) thing this Cushing's but try and stay positive as all being well you've hopefully got a whole lot of living to catch up on X

    • Coc87
      Coc87 Annie2012

      Posted

      Annie thank u so much, cause ur the 1st person I’ve heard mention when they’re bp became normal again. That makes me feel more content too knowing it was so many months down the line. As much as I want to lose the weight, I more importantly want my bp to regulate.  

      Yes I’ve had to start hydrocortisone, 20mg am and 10mg pm. I was so nauesated when I didn’t have it but they realised my other adrenal isn’t producing enough as u say. An I feel better for the steriods lol. 

      I honestly can’t wait for the day I can say it was a year ago An more, a distant memory. 6years! I’m sure u don’t know ur self compared to when u had Cushing’s. It so debilating. I jus can’t wait to start back to work an b able to go out at weekends An do normal things. But it’ll take time. I know that. I’m jus glad to be on the healing side of it. 

      U done well on that laptop lol 😛 xx

    • sarah3365525
      sarah3365525 Annie2012

      Posted

      Hi Annie,

      Thank you for the encouraging news. I am getting my right adrenal gland removed in a few weeks.

      Do you know if the recovery depends on how long you have had it or the severity of the symptoms ?

      Mine was sudden and drug-induced but the symptoms were strong and severe and I got every symptom in the book plus progressive memory loss and concentration difficulties.

      I have had it for 10 months now.

      Amy.

  • patty44596
    patty44596 toni49036

    Posted

    I screamed to my doctors 2 years prior to diagnosis that I had Cushings. Lab tests showed normal cortisol. So 2 years went by and I gained more weight, total 70 pounds. Had all the physical symptoms you read about. Could be the cushings poster child if you looked at me. Had high blood pressure, high testosterone (Im female), easy bruising on my forearms, and just before diagnosis this year I was pre diabetic. The weight come off pretty quickly for me. I had pituitary tumor. Never experienced fatigue.
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