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

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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

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  • Posted

    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 smile. 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 smile

    • Posted

      Hi deb3313

      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. smile

    • Posted

      Hi Reemaa, Your English is pretty good smile

      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 smile

      Good luck. I hope they let the testing begin.

    • Posted

      Thanks deb3313

      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.

  • Posted

    Hi all.

    Instead of a new post, I am asking here.

    Today I passed stool green in colour. Usully green faces are due to diarrhea.

    Kindl confirm me Is it anything related to cushing or not? Has anyone experienced this.

    Thanks

    Reema

    • Posted

      It can also be caused by something you have eaten... Licorice, Spinach, anything green smile. 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 smile. I had black jelly beans once and got green stools !
    • Posted

      No nothing greeny. All I had yesterday is pasta. Also chocolate ice cream 3 times a daY wink

      I am on medicine also cabergoline for prolactinoma.

      Will wait for 3 days more.

    • Posted

      Hi deb3313

      Ur reply has been deleted? Send me without any link to other sites, if there was any.

    • Posted

      LOL

      All i said was....

      Cushing's Disease and Vitamin D

      Cushing's syndrome causes thinning of bones and bone loss due to high levels of cortisol in the blood. Bone loss can lead to increased bone fractures over time, according to the Pituitary Society. MayoClinic advises patients with Cushing's syndrome to take enough vitamin D. Vitamin D helps the body absorb more calcium, which is a mineral that strengthens bones.Vitamin D should be taken together with calcium.

      Vitamin D is a fat-soluble vitamin that is stored in the body's fatty tissue. The daily recommended dietary intake of vitamin D is 400 IU in males and females, according to Med line Plus. Patients with Cushing's disease may require higher amounts of vitamin D. Foods rich in vitamin D include fortified milk, butter, cheese, cream, oysters, margarine, fortified cereals and fish.

      And i put the place where i got the info from...

      If this doesnt get through this time, we will just have to wait and see if the moderator lets it through smile

    • Posted

      Yay, it went thru...

      My Vit D level was 5 three months ago. Now its 18. It needs to be above 30. These levels are ng/ml. For the british and aussies out there the conversion is 15 three months ago, 47 now and needs to be above 75, thats nmol/l.

      I have been taking Vitamin D 3 5,000iu with added 90mcg of Vitamin k2 daily.

  • Posted

    Hello freinds...

    Is any of u know the link of vitamin D with pituitary tumor? Or vitamin D with cushing disease.?

    My vitamin D is less than 4. Not even on measure.

    Is this a separate issue or linked with this pituitary tumor thing?

    This would be my last question, I hope so.. smile

    • Posted

      Hi Reemaa,see deb3313 comment on this discussion.I now take calcium tablets which include Vit D in them,as I now have to take replacement steroids following pituitary surgery.My calcium/Vit D tablets are prescribed,not bought by me.
    • Posted

      Most Vitamin D that is prescribed is Vitamin D2. This is not the best Vitamin D for our bodies. Check and make sure your Vitamin D is D3 and not D2.

      The difference with D2 and D3 is that D3 is what your body naturally makes when your out in the sun. Its not foreign to your body. Vitamin D2 promotes the clumping together of amyloid in the brain so sets you an the path to Alzheimer's. Vitamin D3 may be less toxic than D2 because higher concentrations of D2 circulate in the blood when consumed (compared to vitamin D3). It does not bind as well to the receptors in the human tissues compared to vitamin D3. Vitamin D3 is the more potent form of vitamin D, which is a potential benefit. For example, obesity tends to lower blood levels of vitamin D, so a more potent form is needed. Vitamin D3 has been the most utilized form of vitamin D in clinical trials, and there have only been a few clinical trials of vitamin D2 to prevent bone fractures in adults. Vitamin D3 is more effective at raising and maintaining the vitamin D blood test (again, D2 binds less tightly to the vitamin D receptors in the body; therefore, D2 does not circulate as long in the body, which means it has a shorter half-life). I am taking Vit D3, 5,000 a day with 90mcg of K2. The K2 helps binds the calcium to your bones, providing a stronger Skeleton . Im still working my way up to Normal levels, it seems to take a while. But then i think i have been deficient for at least 20 years. So i'm not expecting an overnight miracle . We are all different though and all respond to things faster or slower than others. I hope you respond fast.

      PS I have done extensive research on Vitamin D and yes i have the resources used but cant post them here.

    • Posted

      Hi,My tablets are Calceos,with added D3.I mustn't have Vit K,as it interacts with Warfarin,so can only have it if it naturally occurs in foods.Then the warfarin level can be adjusted accordingly.

      Great information Debs.

    • Posted

      Absolutely Gill you have made an important point. If anyone reading this info takes other medications or have other medical conditions, its best that you speak to your pharmacist or doctor before taking any over the counter supplements including vitamins. Many people dont think it matters if its something you can buy over the counter. It can matter a lot in some cases.The Vit K / Warfarin is a good example smile.

      And Thanks smile

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