Improved
6118 HealthChanged
3788 LivesSaved
3574 Lives0 lives impacted in the last 24 hrs Learn More
Two years ago I suddenly began having double-vision. The neurologist did an MRi and said everything was fine except a history of migraines - and I have had migraines all of my adult life. The opthamologist said the same. It went away - and then returned suddenly again. In the meantime I was becoming more fatigued, irritable, angry for no reason, and depressed with no help from medications. I was on Levoxyl and that had helped. No longer - tired, dry skin, you name it. And sex drive? Hmmm, not sure where that went. 6 months ago they finally found I had near zero estrogen or testosterone - although that was a sudden change as well. So I was put on HRT by a great M.D. and that helped almost immediately. A month later, however, I passed out and likely also had seizure and when in ER my sodium was dangerously low - not other apparent reason for this happening. I had my heart checked including all the usual tests and came back healthy. Neurologist ran another MRI - fine. My GYN sent me to an endocrinologist and my cardiologist pushed for more testing for my pituitary. Finally - they find after 2 years a pituitary adenoma that is likely causing everything. But it took pushing by my cardiologist to get this addressed through a special MRI via my endo. We'll see where we go from here - but it has been a 2 years of high fatigue, low mood, and feeling labeled as having a history of depression rather than a strong look at the reasons. Thank for for 2 docs who kept pushing.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment5 Comments
It was almost 3 years for me too. Until I finally asked them to check my levels. They hesitated and said it wasn't necessary. I had gone to 5 different doctors, and i finally pushed my new gynecologist to do it. Well, to their surprise, they found a pituitary tumor. I was angry and thrilled at the same time. Angry that no doctor ever listened to me and were bias just cause I had anorexia nervosa when I was 16. they blamed every time i felt sick on Anorexia--which I had recovered from when I was 17. Every single one of them, nurses too. It wasn't fair. I was thrilled because I finally knew what the problem was--why my weight had been so crazy, why my vision had worsened, why I had constant headaches, and vomitting. Doctors need to put their bias opinions aside and listen to their patients. It's very frustrating and I am still extremely aggravated with the whole thing.
October 23, 2011 - 9:20amThis Comment
Jacque,
April 26, 2010 - 10:37amI was very fortunate in finding a new GYN who had recently moved here, and she and the cardiologist really were helpful in finding a good endo. The hormones have taken time, but they are helping - and I do hope that yours are as helpful. My GYN has really focused in the area of HRT, and she has brought options I didn't know existed that also helped improve things more quickly with the injectable pellets. The thyroid has been harder, but we're still working on them. Don't be afraid to ask for options, like trying another thyroid medication, i.e.: levoxyl helps me, but synthroid makes no changes in my system; or the pellets versus patches or pills for estrogen. Get educated and be proactive in these issues - it really does help since so many docs just use what they've been using forever. And there are great new things available with less side effects. I've also found spiritual resources to be so helpful, and the support of a couple close friends. I do hope you are able to call on both of those as well. My fear is this going into a tumor or cancer. I'm glad to hear yours was successfully removed, that gives me hope. And we all need that. Take good care.
This Comment
Dear Beths,
April 25, 2010 - 9:57pmI cant imagine your two years of suffering,I have recently had a craniopharyngioma removed from my pituitary,and now rely on hormone replacements for cortisol,diabetes insipidus and thyroid.I guess the symptoms had been creeping up for some time but soon escalated with the visual blind spots which were causing me to be fearful when driving,and the fatigue was terrible,I could only drag myself through each day wondering what on earth was happening,and i lost interest in everything;I was like a mere shell of myself.Thankfully once I had an MRI (after much persistance with GP and specialists)I was diagnosed and the tumour was removed,now after ten weeks I have been able to return to work part time,and slowly trying to adapt to the medications and find the right dosages for me,I would love to here from other people who have been able to master the medications.
This Comment
Hello,
December 2, 2012 - 8:02pmI am a 23 year old woman who was diagnosed with a craniopharyngioma about two years ago and had it removed January 2012. I am on DDAVP, hydrocortisone, and levothyroxine. I take the DDAVP only at night but sometimes I feel so bloated because I drink tons of water throughout the day. I also have gained over 30 pounds, I think because of the steroids. I am interested to see if you are experiencing any of these problems.
-RIta
This Comment
Dear Beths,
What a long two years you've had. But I am glad that you finally have an answer to your symptoms. I cannot imagine having to go through life not knowing what is causing me to feel so ill and many people have to because they can't get an answer-- lucky for you, you had two VERY proactive doctors. Thank you so much for sharing your journey with us and for giving hope those patients out there who currently have no answers. Hopefully, they will see what the persistence of some doctors can do for their patients. Yours were advocates for you and it is important to realize that if your doctor is not being an advocate then it may be time for a change.
Best of luck to you, please continue to keep us posted!
April 25, 2010 - 12:47pmThis Comment