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P. Hyde, Undiagnosed Bio

March 14, 2021

MaryO Cyclic, Male, Other Diagnosis, Prolactinoma, Undiagnosed , , , , , , , , , , , , , , , , , , Leave a comment

48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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Video: Happy Girl tells her Story So Far

October 3, 2020

MaryO Video , , , , , 1 Comment

I am not so great at typing since my mind gets so jumbled but I have been at this journey for 2 years.

I did make a detailed youtube video to tell my story so far.

Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there’s some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, “if one more doctor dismisses me, I am ending my life! I can’t live like this anymore!”

These are very important things to remember.

1. Not every person has all the symptoms especially mild Cushings but we are still just as miserable.

2. Mild episodic Cushings may not show as elevated cortisol on UFC or midnight salivas. We have lots of lows & some highs that are sometimes difficult to determine because it could be just a few hours of high cortisol in a day & the rest normal or low.

3. There are tests like the 17-OHS that can show abnormal cortisol levels & should always be done on the same 24HR UFC urine.

4. Don’t blow off someone by just doing a low dose dex suppress, that test is ONLY TO SHOW LOCATION OF THE TUMOR! If you suppress, then it points to pituitary, if you don’t it points to adrenal.

5. A Buffalo hump means Cushings more often than it means just a normal fat pad due to a persons fat distribution!

6. Put down the mouse & step away from the computer & examine me!

7. Actively Listen to what I am saying to you!

8. Morning cortisol serums are usually useless because mild episodic Cushings patients trend to be in a normal or low during the morning & mildly to moderate high in the late evening to early morning hours.

9. A midnight cortisol serum is very helpful to determine if the patient has Cushings, IF they are showing symptoms of being on a high.

10. Multiple testing is needed to rule out Cushings. Stop dismissing Cushings as a diagnosis with only one round or even four rounds of tests!

11. These patients are looking to you for help in a very scary time, stop giving the exercise, meditation speech! It only is an insult to us. Most Cushings patients actually don’t eat enough calories & restrict trying desperately to loose weight.

12. Mild episodic Cushings patients can loose weight so don’t disregard if they do because it will come back on even with no change to activity levels & caloric intake.

13. It should Not take 3 years or longer to get a diagnosis of Cushing’s!

14. It should NOT take 4 + endocrinologists pushing off to the next & the next to get a Cushings diagnosis!

15. Stop immediately assuming we have PCOS! Test for it before you pigeon hole a patient! And realize you can have both PCOS and Cushing’s.

16. Stop tossing pills at each individual symptom, look at all the symptoms as a whole. When dealing with Cushings, the only true reverse of the symptoms is surgery.