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.
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.
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.
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.
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!
Hi Reemaa. I am in no way a doctor therefore cannot give advice I can only tell you of my experience. I had high prolactin and high cortisol. The best treatment for me was to have my Pituitary gland removed. It was found i had an over abundance and hyperplasia of the ACTH cells in the pituitary gland. The actual surgery wasnt bad. I was really worried about not being able to breath, not being able to sneeze. But it was fine . Everyone has different experiences with these operations. Some just have a tumor removed. Some have one lobe of the pituitary gland removed and if absolutely necessary the whole gland is removed.
I spent 5 days in the High dependance unit followed by 6 days on the general ward. Some people are in and out of hospital with in a couple of days ( or so they have told me). Dont be afraid of the surgery. Its better than spending years with excess weight, diabetes, fatigue and god knows what else in the future. Also if i can suggest. Get your doctors to check ACTH levels and your Vitamin D levels as well. Let me know if you have any questions
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
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.
Hi 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.
My vit D is less than 4. I've taken injections till 3 weeks and now on medicine for that.
Acth and cortisol all doctor said after a month. Other than this, ever other harmones have been checked even growth harmone gtt test also done to test acremogaly and thank God result was on my favour.
Abnornal result was of prolactine 112, testosterone was high too and ifg-1 was slightly high. And ovaries were prominent little enlarged which doctor said it's not that abnormal.
My endo ordered test for acth and cortisol afzer a month i dont know why he doesnt wanna know wats the level of these harmones at this time. There must be some reason.
What would u advice me? Should I force my endo to let me have acth test immediately?
I hope u getting m english, ignore all mistakes. Kindl bear m english.
I dont know why your Endo would want to wait 1 month to test. I would be testing now for a baseline and then retest in a month. Only reason why you should wait is if you were on medication that could possibly raise cortisol and the doctor wanted you to stop for the test!!!??? Not sure.
But be prepared. I went thru fortnightly then monthly testing for 5 months. If your cortisol or ACTH are out of range, they will want to do more and more tests over a period of months to confirm. First they do blood test. Then 24 hr urine, Midnight saliva and overnight dexamethazone test. and they repeat all these for about 5 months depending on results.
Cushing's disease is very rare so the doctors want to make sure before providing a diagnosis.
Personally, if it was me and there was no reason to wait, i would ask the doctor to test now as if there is any problem they are going to have to retest in a month anyway
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.
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
Oh so many tests, anyhow finally u overcome fm all of this, all is well when end is well .
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 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.
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
Yes exactly what my point is. The Test given to me is of serum cortisol. Procedure is like dexamethazone 5mg 2 tablets at 11 P.M and to get test cortisol serum at 8 A.M next day.
I'll try to get my test done asap. Then will repeat it next month.
Take care. Ill get back to u all with result of my s.cortisol soon.
It can also be caused by something you have eaten... Licorice, Spinach, anything green . I would just keep an eye on it. If it keeps persisting a green colour then let your doctor know. Normally if its just 1 or 2 days....its nothing to worry about . I had black jelly beans once and got green stools !
. Everyone has different experiences with these operations. Some just have a tumor removed. Some have one lobe of the pituitary gland removed and if absolutely necessary the whole gland is removed.