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help! ... Is surgery necessary in case of cushing disease due to pituitary tumor..? please read

Posted , 4 users are following.

karishma123
karishma123

Iam 28 years old female.

I have 2 microadenomas. One is prolactine producing and the other one is not known. Doctors are doubting that the other could be producing excess cortisol leads to cushing syndrome. But instucted me a blood test after a month and not now. So cortisol teat is scheduled after a month.

Currently I am taking cabergoline half dosage twice a week for prolactinoma.

I am just curious to know what if after a month cortisol result show that i have cushing disease. Do i have to go for surgery for that. Cant I treat that through medication.

Thanks

Reema

1 like, 32 replies

32 Replies

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  • vicky61456
    vicky61456 karishma123

    Posted

    Hi, I can only answer your questions from my own experience.  I did have excess cortisol and with other side effects  and tests was diagnosed with Cushings.  I had a non malignant tunour removed from my Pituitary Gland in Decenber 2012.  I do hope that you will get answers.  Cushings is so difficult to diagnose fue to the fact that there are so few of us.  I found the not knowing awful.  Take care.
    • karishma123
      karishma123 vicky61456

      Posted

      Hi vicky61456

      Thanks for replying.

      How many test u gone through in order to finally conclude cushing disease.

      Ive been given following test that is also to do after a month.

      Dexamthrne .5mg 2 tablets at 11 P.M and to get test cortisol serum at 8 A.M next day.

      Do u think I should wait for a month to get this test done. Shouldn't i do it now?

    • vicky61456
      vicky61456 karishma123

      Posted

      Hi Reemaa, I had a cortisol test in Bristol during a clinical trial.  This was repeated several times.  I also had Petrosal Sinus sampling so that my surgeon at Bristol could pinpoint exactly where the tumour was.  I had a bllod test for Cortisol and an overnight test.  I had been tested for every disease known to man.  I then watched Doc Martin on the telly and he was talking about Cushings.  As I said I had always thought the excessive hairiness and sweating were a personal problem.  It iturns out that they are symptoms too.  If I were you I would do exactly what the consultant says, trust for now in his judgement.  I do hope it all goes well for you.  When the op is done you will lose the weight and other horrid symptoms after a while.
    • deb3313
      deb3313 vicky61456

      Posted

      Reemaa Vicky has mentioned the petrosal sinus sample. They will only do that invasive test if they cant see your microadenoma's on the MRI scan ( which i presume you already had if you have been told you have adenoma's ). So that would be one less test smile
    • karishma123
      karishma123 vicky61456

      Posted

      Oh so many tests, anyhow finally u overcome fm all of this, all is well when end is well smile.

      Yes I am following my endo too. I do trust him but not blindly so keeping myself updatd thru u all.

      I wish to be in 50s kgs, tumor not bothering me, its only weight that bothers. I am 85 kgs now sad this killing me. I hate injections so u can imagine how much operation scares me.

      Excess hair growth anywhere in our body is always a harmonal problem esp in female, I was aware of this that's why consulted an endo immediately.

      Hoping for the best.

    • gill43753
      gill43753 karishma123

      Posted

      Hi Reemaa,It looks like your doctor has it planned out,so,as Vicky said,just go with that.I can't remember how many tests I had,except that I couldn't have the MRI,so had to be sent elsewhere to see a specialist surgeon,who could locate the tumour just with a CT scan.The MRI is very magnetic,and I have a metal filter to stop the movement of blood clots,as I am susceptible to them.Gill
    • karishma123
      karishma123 gill43753

      Posted

      Okay i will have to keep patience then.

      All rite will see after a month how it goes.

      Thanks for taking out time for me. Iam really thankful to u and all others.

      Will update u after any progress cms

    • karishma123
      karishma123 deb3313

      Posted

      Yes i had done mri in the very begenning, I have 2 microadenomas sad Not only one. Its a couple on date in my pituitary gland lolz smile

      The very first test was of prolactine and then MRI of brain. Huh and then a lobg list od blood tests I have gone through.

      In my mri, there were too many findings. One adenoma at the right side 9*6mm and the one at the midline 4*4.6mm and rite side flood level there is fluid susceptibility of hamerrhage. Pitiary stalk is mildly devited towars left.

      Doctors said ignore all. Only picked 2 micro adenomas. If I ask about fluid and ask about pit stalk... My Doctor makes me hyper by replying that its nothing but ur anxiety... At that time I wish I could kill him lolz smile

  • gill43753
    gill43753 karishma123

    Posted

    Hi Reemaa,I think surgery is usually necessary to remove the growth. That happened to me, when Cushing's was discovered in 1997.Should you wish to know more about this from people with more expertise, go onto 'The Pituitary Foundation' website, and click on 'Support for you'.Do keep in touch,and let us know how you're getting on.
    • gill43753
      gill43753

      Posted

      Hi again Reemaa, I second what Vicky said, it was awful not knowing, especially when symptoms dragged on for a long time.I'm glad you are being seen to and tested. It took me 5 years to get that far.
    • karishma123
      karishma123 gill43753

      Posted

      Hi gill43753

      Thanks for replying smile

      Yes definately awful. But I am going to two endocrinologist to make sure not a single point is missed, both are from the panel of best endocrinologist of my country. Other than this, learning from expereince of u all supportive and helpful people. Ive been to that pit foundation site, it is informative but lengthy smile

      5 years is too much, I hope u r stable now and stress free. I dont know frm how long ive been suffering Id I really have this cushing dis because I started noticing all this after my MRI result. I came to know about pituitary tumor first and since then started reading about pituitary gland functions.

      Test is scheduled after a month. Only this thing irritating me.

      Anyhow remmember me in ur prayers.

      Best wishes

    • gill43753
      gill43753 karishma123

      Posted

      Hi Reemaa.Will be thinking of you.Let us know how you're doing,and we'll try and support you as best we can.😊
  • eve73207
    eve73207 karishma123

    Posted

    Hi Reemaa i think it would be wise to have the surgery as they will need to know if the cyst is malignant or not ... I'm pretty sure they have a good idea but when they removed my adrenal gland plus tumour they found it to be malignant .. I was sort of forewarned but still wasn't ready for the result ... The op itself was no problem in on Friday op saturday and home Sunday.... Good Luck!
    • karishma123
      karishma123 eve73207

      Posted

      Hi smile Good to hear ur op was so successful. Hope u having a normal life post op..

      Mine is pituitary tumor not adrenal gland tumor. Doctors saying pituitary tumors are non-cancerous esp if they are harmone producing. Still have no knowledge. The have hold me till a month. Next appointment is after a month with other cortisol test report for the first time and repeating of prolactine. Lets see what happens. I am just 28 i dont want any surgery. I cant afford to loose any of my gland.

      Wishing u a healthy life. Iam so relaxed to see replies from all of u. It makes me feel I am not alone.

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