Aa
Desperate for advise from someone who knows!
I was diagnosed with a 5mm pitituary tumor. I went to a nuero endo Monday and now she is doing blood work to test my hormones. My gyno told me that my prolactin was high but she said no and didn't agree. In 3 years I suffer with a debiliting headache Every day ,had an ablasion that tissue grew back from in two weeks which led to a hysterectomy. Always had ovarian cysts that got worse in last few years. Now I am loaded with breast cysts all kinds are septated with rapid tissue growth . I am leaking as well. I have rare supra ventical tachsrdia in which my heart operates 44 percent of the day at a rate of 140 to 160 beats per minute. I also have tissue growth in the esophagus that was just biopsies as well. This doctor that I saw told me that she doesn't know if any of this is related. I can't see that bc no matter what hormone they gave me in the past or med for my heart my body rejected it. I am feeling hopeless. She told me the tumor isn't big enough to cause a headache though. Please help. I don't know what to do
Hey-
I've seen your posts but I don't know how to answer :(
It's good that you went to the neuroendo as that is who you want to see for sure! The pit gland a bunch of hormones but it make makes two hormones FSH and LH which are related to fertility. And then high prolactin just muddies it all up.
Often what happens when a woman gets a pit tumor that is not behaving itself, is that this women gets irregular periods and then their endometrial lining builds up and wham...gyno probs. Prolactin causes breast leaking too.
Now all this other tissue growth that you mention i dunno...
This heart thing that you mention is that new? or is it something that you have had for a while?
What do you mean when you say "I can't see that bc no matter what hormone they gave me in the past or med for my heart my body rejected it"
Did they check your IGF-1 which is the indicator for growth hormone?
Also #1don't give up! and #2don't listen them when say that pit tumors don't cause headaches they certainly can. I have headaches and know of others who have them too!
Horselip
I've seen your posts but I don't know how to answer :(
It's good that you went to the neuroendo as that is who you want to see for sure! The pit gland a bunch of hormones but it make makes two hormones FSH and LH which are related to fertility. And then high prolactin just muddies it all up.
Often what happens when a woman gets a pit tumor that is not behaving itself, is that this women gets irregular periods and then their endometrial lining builds up and wham...gyno probs. Prolactin causes breast leaking too.
Now all this other tissue growth that you mention i dunno...
This heart thing that you mention is that new? or is it something that you have had for a while?
What do you mean when you say "I can't see that bc no matter what hormone they gave me in the past or med for my heart my body rejected it"
Did they check your IGF-1 which is the indicator for growth hormone?
Also #1don't give up! and #2don't listen them when say that pit tumors don't cause headaches they certainly can. I have headaches and know of others who have them too!
Horselip
Totally agree with Horselip on the headache thing - it does not matter the size - they cause nasty nasty nasty headaches! We all get them and why only a few docs correlate the headaches to the tumor is beyond me!!!
I had two pit tumors - prolactinoma and Cushing's at the same time. I had heart issues with mine - nothing like yours though - irregular heart beat, tachy, POTS etc. unlike the usual high BP - so I know heart stuff happens with the Cushing's. The tissue growth I have not heard of either. The prolactin messed with my period my mind and it was a nightmare - what a PMS x10...
Did you get a copy of your tests? Maybe you have to find another neuro-endo - sounds like you got a dud....
I had two pit tumors - prolactinoma and Cushing's at the same time. I had heart issues with mine - nothing like yours though - irregular heart beat, tachy, POTS etc. unlike the usual high BP - so I know heart stuff happens with the Cushing's. The tissue growth I have not heard of either. The prolactin messed with my period my mind and it was a nightmare - what a PMS x10...
Did you get a copy of your tests? Maybe you have to find another neuro-endo - sounds like you got a dud....
Thanks for your reply. I was diagnosed with the heart problem in November of 2010. I get holtered every three months The female problems began in jan of 09 and they tried progesterone in the form of pills and an insert to stop the bleeding. Nothing worked. The hysterectomy was in June of 2010. Nothing took my estrogen levels down. But the headache came first in 2008.
She is checking all hormones that pitituary produced. My prolactin is only a 14.3 and my gyno said although that is in range it's still not typical. My endo nuero said that prolactin isn't causing my glactorea.
My body seems to react weird to all meds. Either allergic or no change in symptoms The strongest headache pill does not even dent the pain. The beta blocker and half the lowest dosage put me into start of congestive heart failure. so everything is just wacky. And the tumor was recently diagnosed.
She is checking all hormones that pitituary produced. My prolactin is only a 14.3 and my gyno said although that is in range it's still not typical. My endo nuero said that prolactin isn't causing my glactorea.
My body seems to react weird to all meds. Either allergic or no change in symptoms The strongest headache pill does not even dent the pain. The beta blocker and half the lowest dosage put me into start of congestive heart failure. so everything is just wacky. And the tumor was recently diagnosed.
I feel so bad for you :(
In general pituitary tumors are fairly cut and dry. They are either secrete or don't. They effect certain hormones or don't. Once you get your hormonal tests back get a copy and post them. We can try to help you to interpret them.
There is one quirky thing that I've heard of re Prolactin where a lab dilution needs to be done because the levels are over a certain point. So then a mistake is made and the levels seem lower than they really are. I forget the name of it. But hopefully they recheck that too.
I've never heard of one affecting the heart like that, except maybe high growth hormone via a test called your IGF-1, initially. Your neuro endo better be checking for that, or run.
Also they should be checking your thyroid from top to bottom too! There is something called a TSH secreting adenoma that might cause cardiac issues too.
hmmm
I would ask your main doctor if it would ok if you get referred into pain management while you are still in a diagnostic stage?
That is something that has helped me to cope quite a bit. As there is nothing worse than having a headache for almost six years...Now I am able to bring to pain level down a lot with meds. I would not be here writing this, if it were not for these meds seriously.
Hugs
Horselip
In general pituitary tumors are fairly cut and dry. They are either secrete or don't. They effect certain hormones or don't. Once you get your hormonal tests back get a copy and post them. We can try to help you to interpret them.
There is one quirky thing that I've heard of re Prolactin where a lab dilution needs to be done because the levels are over a certain point. So then a mistake is made and the levels seem lower than they really are. I forget the name of it. But hopefully they recheck that too.
I've never heard of one affecting the heart like that, except maybe high growth hormone via a test called your IGF-1, initially. Your neuro endo better be checking for that, or run.
Also they should be checking your thyroid from top to bottom too! There is something called a TSH secreting adenoma that might cause cardiac issues too.
hmmm
I would ask your main doctor if it would ok if you get referred into pain management while you are still in a diagnostic stage?
That is something that has helped me to cope quite a bit. As there is nothing worse than having a headache for almost six years...Now I am able to bring to pain level down a lot with meds. I would not be here writing this, if it were not for these meds seriously.
Hugs
Horselip
Yes she rechecking prolactin and added lh fsh cortisol atch and growth hormone. My ob checked tsh and t free 4 so she didn't repeat that. I've read that women who have prolactin tumors are overweight and can't lose weight. I'm the opposite- 90 lbs and can't keep it on. Is that true? I will seek pain management though like you said bc I am a divorced mom of 3 boys and functioning is hard.
Yes she rechecking prolactin and added lh fsh cortisol atch and growth hormone. My ob checked tsh and t free 4 so she didn't repeat that. I've read that women who have prolactin tumors are overweight and can't lose weight. I'm the opposite- 90 lbs and can't keep it on. Is that true? I will seek pain management though like you said bc I am a divorced mom of 3 boys and functioning is hard.
The endo is checking the right stuff, so that's good. When will you get the results? Have you always been on the thin side or is this a change?
Yes, high prolactin sometimes causes weight gain but not always. A growth hormone secreter or ACTH secreter could cause some of your symptoms.
Good luck with pain management.
Horselip
Yes, high prolactin sometimes causes weight gain but not always. A growth hormone secreter or ACTH secreter could cause some of your symptoms.
Good luck with pain management.
Horselip
She told me hormones take about a week. So I'll expect her call in 2 weeks haha! I had the bloodwork wednesday. Thank you so much for your communication. I have always been thin around 110. But not 90 lbs.
Low cortisol - low ACTH causes weight loss and heart issues may come with that one due to the issues with sodium and potassium. Even if your tumor is not a secreter, it could be interfering with the secretion of other hormones and messing up other things. My tumor twin and another person I know routinely lost K and no reason was found - they would pass out. Some of us are really bizarre with medications too.
Back in February she tested me for a pheo On my adrenal glands bc of the heart and the weight loss. She injected me with cortisol and bc of my heart issue she had to do it in the hospital bc she said that cortisol injection raises your heart rate. The ironic thing was that when they injected me with it my heart went from 125 Bpm down to 82. The doctor and the nurses were shocked at the opposite reaction. It was strange. But when when my tests came back negative for pheo I was basically dismissed.
I'm waiting for these blood tests and hope I have an answer.
Does a good dr realize that it can interfere with hormones even if it's a non secteter?
I'm waiting for these blood tests and hope I have an answer.
Does a good dr realize that it can interfere with hormones even if it's a non secteter?
Pheos and other tumors can secrete on cycles - so you may not have been high at the time. One test is not good enough - for ANY hormonal tumor. Get a copy of your tests - find another doctor please.
I have not heard of giving cortisol to raise a heart rate. It can but gee! I had high cortisol and a LOW BP so it does not have to happen - what can happen (per my cardiologist) is that your body cannot manage the change in fluid dynamics from the cortisol changes, and the BP drops.
The pituitary lesion is up there doing something - you have symptoms - you need the right neuro-endo to get to the bottom of it. It may take a few docs to find the right one!
I have not heard of giving cortisol to raise a heart rate. It can but gee! I had high cortisol and a LOW BP so it does not have to happen - what can happen (per my cardiologist) is that your body cannot manage the change in fluid dynamics from the cortisol changes, and the BP drops.
The pituitary lesion is up there doing something - you have symptoms - you need the right neuro-endo to get to the bottom of it. It may take a few docs to find the right one!
Yes- a good neuro endo should also know that a non-secreter can affect your hormones. My Rathke's cleft cyst was already affecting my thyroid, female hormones and growth hormone, before it was removed.
So yes!!! A non-secreter can make certain pituitary hormones ones lower.
Rumpled brought up a very good point about cortisol. If it is low that could be behind the weight loss.
I now have low cortisol because my pit gland does not work anymore. If I don't take my hydrocortisone pills I get very tired, have no appetite and my blood pressure goes low. Never given any thought to how it affect the heart rate though. My pressure always goes up right after I take my meds.
Throwing out a theory...maybe when they did that cortisol injection you were low in your levels of cortisol....and the injection restored you to homeostasis? Cause 82 is a healthy good rate while 125 is kind of high?
I don't know anything about pheos but it makes sense that they could be pulsitile in nature and require more than one test to catch!
Horselip
So yes!!! A non-secreter can make certain pituitary hormones ones lower.
Rumpled brought up a very good point about cortisol. If it is low that could be behind the weight loss.
I now have low cortisol because my pit gland does not work anymore. If I don't take my hydrocortisone pills I get very tired, have no appetite and my blood pressure goes low. Never given any thought to how it affect the heart rate though. My pressure always goes up right after I take my meds.
Throwing out a theory...maybe when they did that cortisol injection you were low in your levels of cortisol....and the injection restored you to homeostasis? Cause 82 is a healthy good rate while 125 is kind of high?
I don't know anything about pheos but it makes sense that they could be pulsitile in nature and require more than one test to catch!
Horselip
So I had a terrible day. The doctor called me and said my hormones were normal and to come back in a year!!!!!!!!!!! I told her that I consulted with a neuro radiologist thanks to a dear friend that runs a center in NYC and he said that this tumor is doing something or else I wouldn't be a lactating! And asked her the possiblily about a non secretory tumor causing this. She told me no! So now my friend is getting me in with a good doc in NYC. I can't believe that a doctor would look at a a patient with a heart condition, pancreatic metaplasia, a briad 3 Mamogram with 27 complex septated cysts that is leaking milk, female issues that let me to have a single ovary left after 3 surgeries, elevated on and off glucose levels, and a 4 year headache , then find a tumor in my pit and say its not the cause ! I've been a mental mess all day but seeing your feedback helps me know I'm not an insane hypochondriac.
So I had a terrible day. The doctor called me and said my hormones were normal and to come back in a year!!!!!!!!!!! I told her that I consulted with a neuro radiologist thanks to a dear friend that runs a center in NYC and he said that this tumor is doing something or else I wouldn't be a lactating! And asked her the possiblily about a non secretory tumor causing this. She told me no! So now my friend is getting me in with a good doc in NYC. I can't believe that a doctor would look at a a patient with a heart condition, pancreatic metaplasia, a briad 3 Mamogram with 27 complex septated cysts that is leaking milk, female issues that let me to have a single ovary left after 3 surgeries, elevated on and off glucose levels, and a 4 year headache , then find a tumor in my pit and say its not the cause ! I've been a mental mess all day but seeing your feedback helps me know I'm not an insane hypochondriac.
The injection of cortosol was to see my body's response to how it processes it. But bc my hr was so abnormally high they had to be careful bc the injection causes it to go higher. Mine normalized.
Oh geez that *****
Get copies of those labs. And look at them yourself. Esp the ones that we've pointed out to you. You might be on the edge of the reference range or even off. You've got to just see them for yourself before you come to any conclusions.
Regardless, this doctor is not the right match as you've figured out. Check her off the list and move on. Make a voodoo doll and put her picture on it first and burn it, if that makes you feel better :)
Your situation sounds very complex with everything that is going on. This pit tumor may not be "the answer" to all of your woes. But I know there are endos who say headaches can't be caused by pit tumors.....luckily mine is not on that side of the fence.
You are clearly not processing hormones properly. What the answer is? I don't know. But the way that you handled that cortisol shot above is not "normal"
Glad that your friend is helping you, this is good!!
I don't know what pancreatic metaplasia is but blood glucose probs might be associated with that it could also be a clue as to why you did well on that shot of cortisol?
Horselip
Get copies of those labs. And look at them yourself. Esp the ones that we've pointed out to you. You might be on the edge of the reference range or even off. You've got to just see them for yourself before you come to any conclusions.
Regardless, this doctor is not the right match as you've figured out. Check her off the list and move on. Make a voodoo doll and put her picture on it first and burn it, if that makes you feel better :)
Your situation sounds very complex with everything that is going on. This pit tumor may not be "the answer" to all of your woes. But I know there are endos who say headaches can't be caused by pit tumors.....luckily mine is not on that side of the fence.
You are clearly not processing hormones properly. What the answer is? I don't know. But the way that you handled that cortisol shot above is not "normal"
Glad that your friend is helping you, this is good!!
I don't know what pancreatic metaplasia is but blood glucose probs might be associated with that it could also be a clue as to why you did well on that shot of cortisol?
Horselip
Get another doctor - a year when you are lactating (as may not know, it can be other hormonal issues from thyroid on up that can cause it) so you need to at least get to the bottom on that - it is super painful. Been there, done that.
I also have not heard of some of the things you have - but when you are that complex, you need another doc. I know I was out of the box too - and it took me a while to find the right set of docs.
I also have not heard of some of the things you have - but when you are that complex, you need another doc. I know I was out of the box too - and it took me a while to find the right set of docs.
These are my labs
IGF- 1 210 ng/ml.
Growth hormone serum
2.5.
LH
14.0
FSH
4.6
Prolactin
22.2
Confusing to me bc they give u all these phases for the lh and FSH. Also my prolactin was 14.3 the last test so it went up definitely. I don't see the cortosol on here though?
IGF- 1 210 ng/ml.
Growth hormone serum
2.5.
LH
14.0
FSH
4.6
Prolactin
22.2
Confusing to me bc they give u all these phases for the lh and FSH. Also my prolactin was 14.3 the last test so it went up definitely. I don't see the cortosol on here though?
The Sex hormone ranges depend on what stage of your cycle you are in. I don't think you even cycle??? so don't know how to interpret given that.
The IGF looks ok, so you are probably not running high on that one. I was more worried that one might be high for you...because of the "growths"
The ones that I am more curious about now, are your thyroid labs and cortisol as they "could" be more linked to the symptoms that you have.
Move on, get another doc.
Sending a virtual hug
Horselip
The IGF looks ok, so you are probably not running high on that one. I was more worried that one might be high for you...because of the "growths"
The ones that I am more curious about now, are your thyroid labs and cortisol as they "could" be more linked to the symptoms that you have.
Move on, get another doc.
Sending a virtual hug
Horselip
Ok guys so- I went today to my ob because he wanted to tell me to get a different endo. He read her report and consulted with a reproductive endo and my hormones are not normal at all. My FSH and LH are high and being that other numbers indicate that I don't ovulate at all, absolutely no ovulation taking place in the one ovary I have its clear to see these hormones ate abnormal . My TSH and my t free 4 were abnormal and my sugar is high. SO now today I was diagnosed with poly cystic ovarian syndrome with no uterus and one ovary that doesn't ovulate therefore he said this tumor is a secreting tumor and he said my prolactin was taken when I was on bromocriptine and the numbers still went up 6 points . Sooo in the meantime I got a phone call from my friend that has been helping me and I'm going into Cornell Wiell in NYC tomorrow ! Apparently I am a very interesting case - I'm going to see her take on my case and I'm also going to see this reproductive endo that my ob consulted with. He too told my ob this case is very interesting and he would like to take me on as a patient. I figured it can't hurt. We r still trying to locate my cortisol blood work nc he didn't get that copy either. I know it was ordered. Oh and the pancreatic metaplasia plays into the hormones too.
Thanks for all the support
Thanks for all the support
Ok guys so- I went today to my ob because he wanted to tell me to get a different endo. He read her report and consulted with a reproductive endo and my hormones are not normal at all. My FSH and LH are high and being that other numbers indicate that I don't ovulate at all, absolutely no ovulation taking place in the one ovary I have its clear to see these hormones ate abnormal . My TSH and my t free 4 were abnormal and my sugar is high. SO now today I was diagnosed with poly cystic ovarian syndrome with no uterus and one ovary that doesn't ovulate therefore he said this tumor is a secreting tumor and he said my prolactin was taken when I was on bromocriptine and the numbers still went up 6 points . Sooo in the meantime I got a phone call from my friend that has been helping me and I'm going into Cornell Wiell in NYC tomorrow ! Apparently I am a very interesting case - I'm going to see her take on my case and I'm also going to see this reproductive endo that my ob consulted with. He too told my ob this case is very interesting and he would like to take me on as a patient. I figured it can't hurt. We r still trying to locate my cortisol blood work nc he didn't get that copy either. I know it was ordered. Oh and the pancreatic metaplasia plays into the hormones too.
Thanks for all the support
Thanks for all the support
I had the PCOS and Cushing's and prolactinoma combo... it was ... not nice...
I hope the doctor can help you.
I hope the doctor can help you.
Oh good, it sounds like you have some docs on your side and support from a dear friend. That is great.
I didn't know that you were on bromo. so yes, that would push the prolactin down more. Combine that with the low Thyroid and sex hormones and you might very well be hypopit from this cyst/adenoma thing.
Sounds like you have regrouped and set up another plan. Excellent. Nice to have some docs on your side. And to be told that you are "interesting" to boot, what a compliment :)
Horselip
I didn't know that you were on bromo. so yes, that would push the prolactin down more. Combine that with the low Thyroid and sex hormones and you might very well be hypopit from this cyst/adenoma thing.
Sounds like you have regrouped and set up another plan. Excellent. Nice to have some docs on your side. And to be told that you are "interesting" to boot, what a compliment :)
Horselip
Went to Cornell yesterday. They confirmed that this tumor is not the cause of this. How she explained it made sense. They are still not giving up though like the other doc. They are testing me for a disease called men-1. Especially bc of the pancreatic metaplasia. They think that this tumor is a secondary growth just like the others.
Not sure how to take this but at least they are trying.
Not sure how to take this but at least they are trying.
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