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Pituitary Tumor? The next step...
Hello and thank you for reading my post in advance.
I have been having a multitude of issues since I was young and it wasn't until lately that I've begun to suspect they may be more related than I thought.
I am a 24 year old female who has had hypertension since I was a toddler. As soon as I was old enough, they put me on a alpha-blocker. Later, a beta-blocker was added but alpha blocker was stopped. I am still on atenolol 50 mg daily for this. I have heart palpitations regularly. Around June, I was not stressing and had no caffeinated beverages and while sitting in the middle of my college class I realized I was not breathing well. I then started to get shaky and assumed that I had to eat something as I have often had symptoms of low blood sugar throughout my life and I had not eaten much. When the room started to spin, I grabbed the granola bar in my backpack and went to the bathroom to eat it. By this point, I was feeling the racing and pounding of my heart and nausea was setting in. This was not the first heart episode I had like this. I had one at work before that traveled up my neck and into my head that coworkers could feel just by touching me and another where it seemed like a heart attack. I did not go to the hospital for the first two because I didn't have insurance at the time. This recent time I did because I now do through my college.
They saw me at the college clinic right away but by the time I had enough gumption to walk over there I was just very weak and sick feeling. I went to the ER twice that weekend for similar symptoms in which one episode I collapsed and shook violently from cold. The ER made me WAIT hours to be seen in a waiting room with no supervision with this. I fell asleep in the room waiting for the doc and by the time he got there, well I wasn't having the episode.
Now, you might be thinking, why isn't this in the cardiology forum? Well I also have had issues with menstruation my entire life. I am married and have been for five years without conceiving with no birth control. Doctors just told me I had PCOS without any testing. They put me on birth controls which drove my blood pressure up. I gave up until after this recent heart episode because that SAME weekend I started what is an ongoing menstruation that only paused yesterday. The OBGYN I saw recently just confirmed for me that I do not have PCOS and no growths in my reproductive tract. When my period restarted today, I had more episodes with my heart.
I did see a cardiologist who ran some tests. He said my heart had an extra beat but one is not enough to worry about. He tried a stress test which failed because the drug did not raise my blood pressure enough. I have observed on my own that when I have these episodes, my blood pressure will rise to about 179/140 and drop very quickly.
I did some research of my own and I've been reading about pituitary tumors. Some of the symptoms that I have had for years and did not connect seem like they could be related. I have had milky nipple discharge that doctors never seem worried about. I do have headaches behind one eye and have seen halos and what I can only describe as a center point in my vision that light seems to flow towards like ripples. I've never heard or found anything about the odd visual disturbances. I also have arthritic fingers and joints that a doctor told me at 16 I had a marker for rheumatoid arthritis for when I get older and sent me to some useless therapy. (I just live with it for now) and recently I have learned I have sleep apnea. (Been on treatment for about a month with no change to any symptoms) Blood sugar is perfect, btw.
I feel that I am WAY too young to be having these problems and it's making me very depressed. I'm desperate to find an answer but doctors just want to treat symptoms. Does it sound like I have a pituitary tumor and if so, what kind of doctor do I need a referral to. (I need a referral for EVERY doctor I see that isn't at my school clinic) Would an endocrinologist be the one? I can't help but feel that at least the menstrual and cardiac problems might be linked.
This is ruining my life! Please help!
I have been having a multitude of issues since I was young and it wasn't until lately that I've begun to suspect they may be more related than I thought.
I am a 24 year old female who has had hypertension since I was a toddler. As soon as I was old enough, they put me on a alpha-blocker. Later, a beta-blocker was added but alpha blocker was stopped. I am still on atenolol 50 mg daily for this. I have heart palpitations regularly. Around June, I was not stressing and had no caffeinated beverages and while sitting in the middle of my college class I realized I was not breathing well. I then started to get shaky and assumed that I had to eat something as I have often had symptoms of low blood sugar throughout my life and I had not eaten much. When the room started to spin, I grabbed the granola bar in my backpack and went to the bathroom to eat it. By this point, I was feeling the racing and pounding of my heart and nausea was setting in. This was not the first heart episode I had like this. I had one at work before that traveled up my neck and into my head that coworkers could feel just by touching me and another where it seemed like a heart attack. I did not go to the hospital for the first two because I didn't have insurance at the time. This recent time I did because I now do through my college.
They saw me at the college clinic right away but by the time I had enough gumption to walk over there I was just very weak and sick feeling. I went to the ER twice that weekend for similar symptoms in which one episode I collapsed and shook violently from cold. The ER made me WAIT hours to be seen in a waiting room with no supervision with this. I fell asleep in the room waiting for the doc and by the time he got there, well I wasn't having the episode.
Now, you might be thinking, why isn't this in the cardiology forum? Well I also have had issues with menstruation my entire life. I am married and have been for five years without conceiving with no birth control. Doctors just told me I had PCOS without any testing. They put me on birth controls which drove my blood pressure up. I gave up until after this recent heart episode because that SAME weekend I started what is an ongoing menstruation that only paused yesterday. The OBGYN I saw recently just confirmed for me that I do not have PCOS and no growths in my reproductive tract. When my period restarted today, I had more episodes with my heart.
I did see a cardiologist who ran some tests. He said my heart had an extra beat but one is not enough to worry about. He tried a stress test which failed because the drug did not raise my blood pressure enough. I have observed on my own that when I have these episodes, my blood pressure will rise to about 179/140 and drop very quickly.
I did some research of my own and I've been reading about pituitary tumors. Some of the symptoms that I have had for years and did not connect seem like they could be related. I have had milky nipple discharge that doctors never seem worried about. I do have headaches behind one eye and have seen halos and what I can only describe as a center point in my vision that light seems to flow towards like ripples. I've never heard or found anything about the odd visual disturbances. I also have arthritic fingers and joints that a doctor told me at 16 I had a marker for rheumatoid arthritis for when I get older and sent me to some useless therapy. (I just live with it for now) and recently I have learned I have sleep apnea. (Been on treatment for about a month with no change to any symptoms) Blood sugar is perfect, btw.
I feel that I am WAY too young to be having these problems and it's making me very depressed. I'm desperate to find an answer but doctors just want to treat symptoms. Does it sound like I have a pituitary tumor and if so, what kind of doctor do I need a referral to. (I need a referral for EVERY doctor I see that isn't at my school clinic) Would an endocrinologist be the one? I can't help but feel that at least the menstrual and cardiac problems might be linked.
This is ruining my life! Please help!
Hi there-
I was diagnosed with PCOS in the beginning too, ended up that the docs were right about one thing, I had a cyst but it was not down there.... but up there in my pit gland! Someone had there anatomy wrong hmmph. I am not saying that you have a pit thing going on but it should def be ruled out!!!!! What if that were the answer to all of this?
Have you started looking for a neuro endo? This is the most important step and it might mean that you have to travel. Unfortunately there are not very many good ones out there. But your case sounds kind of complicated and I think that it would be worth it for you to do a little research here.
In a perfect world-Once you get to that right, good doc everything show flow like it is supposed to. An MRI will be ordered. Labs will be done. Clinical exams and histories taken. It will be figured out. it is more likely to happen like this with a good doc.
In the meantime can your obgyn run your prolactin levels just to see if those are off?
Horselip
I was diagnosed with PCOS in the beginning too, ended up that the docs were right about one thing, I had a cyst but it was not down there.... but up there in my pit gland! Someone had there anatomy wrong hmmph. I am not saying that you have a pit thing going on but it should def be ruled out!!!!! What if that were the answer to all of this?
Have you started looking for a neuro endo? This is the most important step and it might mean that you have to travel. Unfortunately there are not very many good ones out there. But your case sounds kind of complicated and I think that it would be worth it for you to do a little research here.
In a perfect world-Once you get to that right, good doc everything show flow like it is supposed to. An MRI will be ordered. Labs will be done. Clinical exams and histories taken. It will be figured out. it is more likely to happen like this with a good doc.
In the meantime can your obgyn run your prolactin levels just to see if those are off?
Horselip
It is difficult - the disorder can be poorly understood and the symptoms overlap with a lot of other things. Oddly, stress can be caused by the tumor, not the other way around depending on the tumor so it really takes a lot of questioning on the part of the doctor - and time - which most will not take - to really get to the bottom of this.
Did you get a copy of any and all testing you got? That can help. It is going to be hard to get into an endo without some baseline testing so you do want to get to at least some doctor to get some testing. Going to a good doctor is key - and persistence is key too. Hopefully your issue is not serious but it should be investigated and not dismissed from the first as stress.
Did you get a copy of any and all testing you got? That can help. It is going to be hard to get into an endo without some baseline testing so you do want to get to at least some doctor to get some testing. Going to a good doctor is key - and persistence is key too. Hopefully your issue is not serious but it should be investigated and not dismissed from the first as stress.
I was diagnosed with a pituitary problem and let me tell you the issues it has caused! Including discharge in my breasts AND migraines with halos! I have a microadenoma, they found it with a MRI which is pricey. I have the same insurance issues as you do but mine is through the Indian Health Services, I got a copy of all my medical records and hit google went back to my doctor and started asking questions. Once she realized I had done my research she started to take me a bit more serious. My neurologist saw my tumor and said it is fine we will keep watching it which was nuts to me, I can't believe that someone would say something so crazy. You have to find loopholes they such to find but they can be found. You can do it just like I did! I know it is terrifying because I am right there with you!
Thanks rumpled for the info. It seems the doctors are trying to bulk me. I went to the student health center to ask about the possible correlation and perhaps get a referral to an endo. (My insurance requires I go to the student center first and I can't go anywhere without referral) Well now they told me it could all be stress and didn't offer any explanations to the correlation. I'll admit I'm stressed but I wasn't until I got the serious health problems (and all the bills that come with them). I'll play their little game though, I think and talk to a councilor and come back demanding answers again just to show I've ruled that out. If not, I'm to the point where I'm ready to pay out of pocket to see a good research hospital specialist.
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Glad your new Gyne ruled it out. As for the cardiac and period issues being related - it can be if it is pituitary. Yes, and endo can help you but alas this comes with a disclaimer (since I myself had pituitary issues) most endos treat diabetes and thyroid - so when you call all of them will say they treat the pituitary but when you are sitting in the office, you will run into duds who will tell you it is rare, you cannot have it, blah blah - so get all the testing you can from any endo or your PCP and then move on to a neuro-endo. A neuro-endo at a pituitary center often won't take you until you have a set of tests that show you are abnormal and it takes a while to get those tests.
You don't have to have every symptom of the tumor to have the tumor - and the tumors differ. I would go to a neuro-opthomolagist and get a good eye check on the odd visual disturbances.
There are some links in the health pages to read and hopefully help you. It seems scary and overwhelming at first - but it can be treated. It is a lifetime thing though...