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High prolactin, Pit tumors, Possible Cushing's disease? Linked?
Greetings Everyone,👋🙂 ❤️✝️ I am for the second time dissolved a pituitary adenoma with the medication cabergolene, The health care here is not advanced because I live in a remote part of the Northern Coast of Canada. I was always having high prolactin levels, with no investigation into it and nurses normalized it until my body almost died from a burned out thyroid and a pituitary tumor that I was told was not the case, until I blacked out and fell, I was then flown to the city of St .John's,NL ( Canada) to be assessed by an internal medicine specialist which then sent me immediately for Pit. MRI and an endocrinologist, I was put on Cabergolene, Synthroid (25), lorazapam and 5 mg of butrans. The first Pit tumor was during the first ever covid lock down, and I was forced to vaccinate in order to fly to the city for medical treatment. I did what was asked of me and the tumor dissolved but Im left with spiking prolactin still that they can't explain, yet no investigation into it, I only ever had my prolactin levels check every few months, I suspect that I have a Cushing's syndrome or disease because I have symptoms of significant hydrosis, extreme fatigue,parasympathetic nervous system was and is still not functioning as it should, my heart is always racing, it's the same feeling of when a nurse said I was borderline hyper thyroid in the 90's, but they said I could live like it , just check blood work every few months to see it I'm high or low thyroid? No medicine. I have unexplained weight gain and changes to my facial appearance, fever's and unknown rash on face and different parts of my body. I don't know what to tell the internal medicine specialist what to test me for to find out if I have Cushing's or not , this may also possibly answer why the pit tumor started and then came back 5 yrs later? Why is my prolactin high without medicine? what causes that? I need my cortisol levels checked I think? I really appreciate all your personal battle stories and the encouragement and bravery you all display so lovely ✝️❤️🙌Does anyone out there have any advice or knowledge about this? I am currently paying for private care in the city, I would love to gain knowledge of what to ask for before my next trip to the city on May 18th-21st...2026. Thankful for all your testimonials and God Bless you all and all the Mayo Clinics staff and their families in the almighty name of Jesus Christ of Nazareth, Amen✝️❤️🕊️🌍👋🙂
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Hello. So sorry that you have to go through health challenges. To check if you have Cushing’s Disease, there are several tests that they gave me to confirm the diagnosis. 24 hour urine test, 3 night (11PM) saliva tests, blood test with dexamethasone taken, MRI. The Mayo Clinic and staff are wonderful. I recently had surgery to remove my pituitary adenoma which caused my Cushing’s. My follow-up is tomorrow. Wishing you the best in your health journey for answers.
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3 Reactions@pennieh I thank you so much for this wealth of knowledge!! God Bless You for your strength and transparency regarding your health triumphs in Jesus name! I can't thank you enough times, I feel like I won a jack pot of information!! The doctor I'm going to see in the city on the 19th, is an internal medicine specialist, I have no family doctor where I live so I hired a private specialist, he does all tests and referrals so now I have a plan!! Praise the Lord!! Amen! I am going to ask him to refer me to the Mayo Clinics, for assessment and care, I have to apply for a passport immediately, I pray for no delays during the process. I prayed a week ago for answers, and a community of like minds so I too can walk in knowledge and confidence that I'm not alone, and together with the Mayo Clinics Experts we all got this, God's all got us and so does the Mayo Clinic!! Highest regards and respect to you all, may you all be protected from the crown of your heads to the souls of your feet in Jesus almighty name, Amen.✝️🕊️❤️🌍
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2 ReactionsAmen!!!! It was my pleasure to share my information. God bless you 🙏🏾 Please update as you go along your journey. Always remember, God is in control and covers us always!
Hello, I'm sorry you're going through all this, but as my colleague mentioned, to diagnose Cushing's disease, they test for ACTH, morning cortisol, urinary cortisol, and salivary cortisol. They also do a dexamethasone test, but only if the levels are high. If you had a pituitary tumor, I imagine you've already experienced this, right? Or did you not develop Cushing's because of the adenoma? I wish you the best of luck, and don't delay. Keep talking to your doctor. This disease isn't very common, so doctors don't usually consider it unless the symptoms or physical changes are obvious. Good luck.
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3 Reactions@gustavo1975 Thank you so much Gustavo!! Right now I'm currently sitting in the office of an internal medicine specialist, I flew to the city to bring him the info from you to me and others on the support group, you guys are all helping to save my health✝️😇🙏 and bring me closer to the answers of why the pit tumors and hoping for a diagnosis, please pray for me my beloved brothers and sisters, you have been a rock for me at this time, thankful for you all and the Mayo Clinic professionals✝️😇❤️🕊️🌍
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2 Reactions@jiryan
Hi, how are you? Any news? Were you able to resolve any of your doubts? I hope everything went as well as possible.
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I am so grateful to you for the information you provided me with, I was able to get a lab requisition for an 8:00am Cushing's test, back to the city of St.Johns, NL on July 14th for this. The requisition states 24 hr cortisol, salivary cortisol and follicle cortisol to be tested, I was surprised to not see a request for a urine sample? Also, no referral to an endocrinologist for assessment, and no protocol of what meds I should stop before testing and for how long prior to testing. I'm concerned to say the least. I should have never been let go from an endocrinologist 5yrs ago, they never looked into why I always have elevated prolactin, and if it caused Cushing's disease or syndrome. I felt unfinished, and not well even after the Cabergolene dissolved the Pit. Adenoma. I was discharged as her patient the moment the tumor dissolved, given Synthroid and told to stay on Cabergolene? Without any reasons!? Currently I am exhausted from my condition but mentally I am frustrated because I have no protocol for this requisition, NL have the highest rate death from pit tumor complications which I believe stems from patients not having an endocrinologist referral or at least a regular Doctor who is in contact with an endocrinologist for you. We also have the highest rate of brain tumor fatalities due to no referral to an oncologist for options like surgery removal, were told that we live with it until we die from it, no time frame given of how long you have left to live, they just give opioids and send you home basically until your dieing. Does you know if I can access an endocrinologist through the Mayo Clinic? I'm desperate for a plan, I am so grateful to you for your advice and information, I feel this site and the people on it are a blessing from God to me, I will not give up, Im 47 yrs old and I will never give in to this negligent failing "training center" ( hospital) here in Goose Bay, Labrador. God Bless You for helping me, I keep you all in my heart and daily prayers, in Jesus almighty name, Amen.I look forward to your response, I pray you are all healthy from the crown of your heads to the souls of your feet, kindest regards, Gillian ✝️🕊️❤️🌍👋🤗