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Unknown pituitary issues

  • Spacehog
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Replied by Spacehog on topic Unknown pituitary issues

Thanks for the comments and the referral to the facebook page!  I sent a request to join that group as well.  I also joined a Cushing's forum and posted the exact same message there, so I apologize if you're in both groups, but I'm too lazy these days to write it out twice.  Haha.
4 months 3 weeks ago #10668

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Replied by carolk on topic Unknown pituitary issues

Hi Spacehog,
PNA also has a Closed Facebook Support Group for Pituitary Patients. You request to join, and once approved by the administrator, only the people in the group would see your posts. I agree with Tammy, you are in good hands at OSU. Getting proper care is half the battle. Prayers!
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4 months 3 weeks ago #10667

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Replied by pnaadmin on topic Unknown pituitary issues

Hello Spacehog,

It's nice to meet you and we are glad you found us. It sounds like you have been through quite a bit but it also sounds like you are on the right track. Ohio State has an excellent pituitary team so you will be in good hands. Following the Buckeyes is also a big plus for them. 

I recommend learning as much as you can about pituitary disorders. Our website has a great deal of information to help you navigate through your journey. Here is a link to a section about getting started that includes tips on questions to ask, what testing will be done and other useful information.

https://pituitary.org/table/get-answers/

I also recommend keeping track of your symptoms that information may be helpful to your doctors. Also write down your questions ahead of time, that way you won't forget when you go in. It can be overwhelming when you go to the doctor, especially when you have a new diagnosis. So many times I have remembered the questions I wanted to ask 20 minutes after I leave the doctor's office haha, so writing them down helps me a lot. 

Keeping your sense of humor is a great attitude and laughter can be quite healing. Wishing you the best and keep us posted. Feel free to ask questions and we will do our best to help in any way we can.

Take care,

Tammy Mazzella
Pituitary Network Association
(805) 499-9973
[email protected]
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4 months 3 weeks ago #10666

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Unknown pituitary issues was created by Spacehog

Greetings! I am new to this forum and also new to pituitary issues. Well, I guess I'm new to being aware of my symptoms being pituitary related.  I was in a severe car accident 10 years ago that nearly took my life. Since then I have had a number of health issues, but I assumed they were all untreatable side effects of my accident. About 5 years ago things with my health began to get worse. I had a bleeding ulcer that sent me to the ICU, and a constant stream of G.I. problems after that. Also my energy (which was already greatly diminished) began to really drop off a cliff. Then 8 months ago things really became bad, so I went to a neurologist for some answers. I had been having severe headaches and also my sex drive was near zero. Shortly after going to the neurologist I became completely impotent and so it is to this day. I also have some mild but noticeable incontinence which is scary. So I was anxious to get to the cause of these newer issues, especially the fatigue which is making life almost impossible. Fortunately, my neurologist is the best doctor ever, so she set me on the path which will hopefully lead to a positive result. From the beginning my neurologist suspected hormone issues and had me tested for several of them. I already get lab work done every 3 months for other health stuff related to my accident, but no one had ever noticed anything.  But after testing my hormones, I was told that I have very low levels of testosterone, ADH and heightened cortisol. This prompted further testing which basically confirmed the initial tests, and the cause seems to be my pituitary gland. But that's as far as we've got so far.  I had a recent MRI which showed no obvious issue with my pituitary gland. However, I'm told that the MRI was looking for issues in the front of my skull (where I had previously fractured my skull in the aforementioned accident).  So my endocrinologist is sending me to Ohio State to receive specialist treatment for Cushing's syndrome (heightened cortisol). I am told they will do a new MRI for my pituitary gland and maybe my adrenal glands to see what is causing the heightened cortisol. They don't want to treat the low testosterone or ADH until they solve the cortisol issue, so I'm just waiting for now. Waiting is not my strong suit, so I wanted to join a forum so that I could hear from folks who have similar issues and we could hopefully help each other some.  I still have no idea what the treatment plan is, or the timetable. But I have always found forums to be helpful for learning about new things.  A bit about my life aside from health issues, I am a 38 year old minister from Ohio. I'm married with 2 kids age 10 and 7.  I love picking up new hobbies and watching movies. I used to play a lot of sports, but that ship has sailed, haha. I do follow the Cleveland Browns and Ohio State football/basketball.  So yeah, that's me. I am fine with discussing whatever, so don't hesitate if you have a question. I try to keep a sense of humor about my health, but I don't want to offend anyone by making light of serious conditions. But for me it sometimes helps to laugh about needing to find a good adult diaper for night time. I mean, if I don't laugh about it, I might cry instead! Haha. So I try to see the lighter side. So that's me. I hope to meet and learn from you all soon.
4 months 3 weeks ago #10665

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