If my friends here could keep us in your thoughts and prayers (Xpost)

[DawnM]

Unfortunately it's not clear because it's in the area of the left side of the pituitary. The first radiology report, first endocrinologist, and another specialist I consulted called it an adenoma. The neuro-endocrinologist after consulting with a neuro-radiologist, I think, is calling it a neoplasm of the pituitary and craniopharyngeal duct. Tumors of the craniopharyngeal duct are, like pituitary adenomas, technically benign but can be very problematic in that they grow and attach to nearby structures. My understanding is if it's that and it shows signs of any sign of growing, it will have to be removed. If it's a pituitary adenoma, they have to make sure it's not a ACTH producing adenoma. That causes Cushing's Disease and would have to be removed. In the last year, dd has gained significant weight and developed other signs of Cushing's so they are taking that very seriously. It's a scary possibility and that's why she's having to do extensive and continued hormonal testing.

 

Initially, I was hoping it would be a prolactinoma because that can be treated with medication, but the doctors disagree about whether it could be that because her prolactin levels are high but not that high.

 

I'm actually hoping it was just something she was born with, was always there, and will never change, or even just disappear.

 

I see.  I have a pituitary adenoma and was diagnosed in my 20s.  It is very small though and hasn't caused me any more trouble since.

[Tiramisu]

I see.  I have a pituitary adenoma and was diagnosed in my 20s.  It is very small though and hasn't caused me any more trouble since.

 

I hope this is the case with my dd.

[PrairieSong]

Still praying, Tiramisu!

[DawnM]

I hope this is the case with my dd.

 

Me too!

[Catwoman]

I see. I have a pituitary adenoma and was diagnosed in my 20s. It is very small though and hasn't caused me any more trouble since.

My dh had his pituitary adenoma for many years, too, and only had it removed when it finally grew enough to start causing vision issues. Fortunately, his vision went back to normal after the surgery. Apparently, once vision problems start, it's important to have the adenoma removed as soon as possible so the problems won't become permanent.

 

We don't really know how long he had the adenoma, because it was discovered by accident when they were testing for something else, but it was still several years after that before it grew in size and caused a problem. At the time it was discovered, the doctor said it had probably been there for years and he also said that many people have them and never even know it because they don't have any symptoms.

[Sugarfoot]

We are going through the exact same thing with my youngest. We took him to Mayo a year ago, and his treatment is ongoing. His first symptom was weight gain. In 9 months he went from the 10 percentile to over the 100th. It's shocking and frustrating. We've done all the testing and his hormones aren't far enough off to diagnose Cushing's yet he has so many symptoms at this point. At one point his prolactin level was super high, but then it went down again the next time we did labs. 

 

His MRIs show a 5mm by 9mm adenoma. We had a consult with the neurosurgeon who said that he's too small right now for the surgery to be safe, but if it ends up to be Cushing's he'll have to have it. Apparently he would then need hormone replacement for the rest of his life. That scares me.  

 

I will  pray for your daughter, her doctors and your family. Please keep us in your prayers as well.

:grouphug:  :grouphug:  :grouphug:

[SparklyUnicorn]

That is a lot to deal with.  I am so sorry.  :grouphug:

[Catwoman]

We are going through the exact same thing with my youngest. We took him to Mayo a year ago, and his treatment is ongoing. His first symptom was weight gain. In 9 months he went from the 10 percentile to over the 100th. It's shocking and frustrating. We've done all the testing and his hormones aren't far enough off to diagnose Cushing's yet he has so many symptoms at this point. At one point his prolactin level was super high, but then it went down again the next time we did labs.

 

His MRIs show a 5mm by 9mm adenoma. We had a consult with the neurosurgeon who said that he's too small right now for the surgery to be safe, but if it ends up to be Cushing's he'll have to have it. Apparently he would then need hormone replacement for the rest of his life. That scares me.

 

I will pray for your daughter, her doctors and your family. Please keep us in your prayers as well.

:grouphug: :grouphug: :grouphug:

Praying for your son, Gina. :grouphug:

 

You must be so worried! :(

[creekland]

 Please keep us in your prayers as well.

 

 

Will be keeping your family in my prayers too.  When do you find out more info?

[Tiramisu]

We are going through the exact same thing with my youngest. We took him to Mayo a year ago, and his treatment is ongoing. His first symptom was weight gain. In 9 months he went from the 10 percentile to over the 100th. It's shocking and frustrating. We've done all the testing and his hormones aren't far enough off to diagnose Cushing's yet he has so many symptoms at this point. At one point his prolactin level was super high, but then it went down again the next time we did labs. 

 

His MRIs show a 5mm by 9mm adenoma. We had a consult with the neurosurgeon who said that he's too small right now for the surgery to be safe, but if it ends up to be Cushing's he'll have to have it. Apparently he would then need hormone replacement for the rest of his life. That scares me.  

 

I will  pray for your daughter, her doctors and your family. Please keep us in your prayers as well.

:grouphug:  :grouphug:  :grouphug:

 

Oh, Gina, I will pray for your family. We can support each other in this.  :grouphug:  :grouphug:  :grouphug:

 

I've been on some support forums for Cushing's and the like, and I haven't heard of many cases where people who have had surgery need hormone replacement for the rest of their lives. It's always possible but it's unlikely, so try not to worry about that now. The pituitary can take a year or more to recover and start producing hormones, but it's function usually comes back.

 

I've heard that with Cushing's the tumors are tricky to remove because of their consistency and how they grow. That makes it especially important to choose a Cushing's experienced surgeon to get it all out and preserve the pituitary. There are only a handful of recommended surgeons in the country. The most famous ones I've hear of are a Dr. S at Massachusetts General Hospital, a Dr. J in Pittsburg, another one in Pittsburg at UPMC, Dr. McC at MC Anderson in Texas, Dr. O at UVA. There are others, too, on the West Coast, for example, but since I'm in the Northeast, I haven't paid as much attention. I haven't heard Mayo mentioned from what I remember. You can find lists at the Pituitary Network website and also at the Cushings-help website.

 

Please keep in touch!!!!

[Sugarfoot]

Praying for your son, Gina. :grouphug:

 

You must be so worried! :(

Thank you, yes, it's been one of those things that is so worrisome I wake up in the middle of the night thinking about it. They can't tell whether it's a solid mass or fluid-filled, so I have this crazy fear that it'll "burst" in the middle of the night. I sort of wish they wouldn't have even mentioned that unlikely possibility. 

 

Will be keeping your family in my prayers too.  When do you find out more info?

 

We will go back to see his doctors in September. He'll have another MRI and more labs. His labs have to be WAY off for a diagnosis of Cushing's to be given. It's frustrating, because I feel like that's all they look at. It's like the proverbial missing the forest for the trees. Thank you for your prayers!

Oh, Gina, I will pray for your family. We can support each other in this.  :grouphug:  :grouphug:  :grouphug:

 

I've been on some support forums for Cushing's and the like, and I haven't heard of many cases where people who have had surgery need hormone replacement for the rest of their lives. It's always possible but it's unlikely, so try not to worry about that now. The pituitary can take a year or more to recover and start producing hormones, but it's function usually comes back.

 

I've heard that with Cushing's the tumors are tricky to remove because of their consistency and how they grow. That makes it especially important to choose a Cushing's experienced surgeon to get it all out and preserve the pituitary. There are only a handful of recommended surgeons in the country. The most famous ones I've hear of are a Dr. S at Massachusetts General Hospital, a Dr. J in Pittsburg, another one in Pittsburg at UPMC, Dr. McC at MC Anderson in Texas, Dr. O at UVA. There are others, too, on the West Coast, for example, but since I'm in the Northeast, I haven't paid as much attention. I haven't heard Mayo mentioned from what I remember. You can find lists at the Pituitary Network website and also at the Cushings-help website.

 

Please keep in touch!!!!

 

Thank you! I was so shocked to see your post yesterday. I haven't met anyone else who has gone through this. I did contact a surgeon on the west coast who specializes in this sort of thing, but he really only does surgery, so his doctors would have to agree that is what is needed. Right now they are saying it's to be avoided in any way possible. I'm really not so sure that's the way to go, but they tell us that no one does surgery without a specific set of labs, and right now his aren't far enough "off." It's so frustrating to see him suffer and change so much and have them say there's nothing to be done until he's worse? 

 

I would love to hear about your experiences so far and how the doctors are proceeding with your daughter. I feel like we need a second opinion, but I don't really know where to take him. We're in the middle of the country, so traveling in either direction is fine for us. You can PM me if that's easier. 

 

I knew something was wrong and insisted on an MRI. We were told that pituitary tumors are so rare in children that it couldn't possibly be that. He was also throwing up in the middle of the night, so they agreed to do it, and there it was. He looks so much like the little boys in the "before and after" Cushing's photos. It's shocking. 

 

The surgeon there said that at his age his nasal passages are so small that damage to the surrounding brain tissue is almost guaranteed. That scares me, but yet it scares me to think of him going on forever like this. 

 

I'm so sorry you're going through this, too. 

[freeindeed]

Praying.

[Tiramisu]

Thank you, yes, it's been one of those things that is so worrisome I wake up in the middle of the night thinking about it. They can't tell whether it's a solid mass or fluid-filled, so I have this crazy fear that it'll "burst" in the middle of the night. I sort of wish they wouldn't have even mentioned that unlikely possibility. 

 

 

We will go back to see his doctors in September. He'll have another MRI and more labs. His labs have to be WAY off for a diagnosis of Cushing's to be given. It's frustrating, because I feel like that's all they look at. It's like the proverbial missing the forest for the trees. Thank you for your prayers!

 

Thank you! I was so shocked to see your post yesterday. I haven't met anyone else who has gone through this. I did contact a surgeon on the west coast who specializes in this sort of thing, but he really only does surgery, so his doctors would have to agree that is what is needed. Right now they are saying it's to be avoided in any way possible. I'm really not so sure that's the way to go, but they tell us that no one does surgery without a specific set of labs, and right now his aren't far enough "off." It's so frustrating to see him suffer and change so much and have them say there's nothing to be done until he's worse? 

 

I would love to hear about your experiences so far and how the doctors are proceeding with your daughter. I feel like we need a second opinion, but I don't really know where to take him. We're in the middle of the country, so traveling in either direction is fine for us. You can PM me if that's easier. 

 

I knew something was wrong and insisted on an MRI. We were told that pituitary tumors are so rare in children that it couldn't possibly be that. He was also throwing up in the middle of the night, so they agreed to do it, and there it was. He looks so much like the little boys in the "before and after" Cushing's photos. It's shocking. 

 

The surgeon there said that at his age his nasal passages are so small that damage to the surrounding brain tissue is almost guaranteed. That scares me, but yet it scares me to think of him going on forever like this. 

 

I'm so sorry you're going through this, too. 

 

I was basically told the same thing. Go to a neuro-endocrinologist to get the tests and then be in touch again if you get a diagnosis. I had a neurosurgeon look at the medical records and agreed that some symptoms would fit for Cushing's. He also looked at the MRI and told me exactly where the tumor was and its size. That alone was reassuring.

 

I can't remember what I mentioned up-thread, but we got the MRI locally. The endocrinologist that ordered it first suggested Cushings after he felt the results did not indicate a prolactinoma, and given my dd's symptoms. He is part of fairly well-regarded local hospital system, but he felt, considering my dd's age and that this could affect her long-term, that we should go to a better "institution" for her care. So I made an appointment with the university hospital system which is the most highly regarded in our region for brain surgery.

 

It is true that they don't do brain surgery unless they really have to. When my dd's tumor was discovered, a priest friend put us in touch with another family who had a child with a brain tumor. They watched her for several years and there were no issues. Eventually, the dd started having language problems and they had to get the surgery. By then she was physically grown and did extremely well with the surgery and recovery. In her case, they did not go through the nose. I'm sure there are even more who never experience a change and never need surgery. I've read again and again--and the neurosurgeon said the same thing--that a lot of people have pituitary tumors that don't cause problems and they never know it. Of course, when we have kids with health problems, it's quite a bit scarier.

 

So far the first endocrinologist ordered a few specialized prolactin tests that would rule out falsely high and falsely low prolactin levels. The second endocrinologist, who is part of a pituitary center, ordered many thyroid tests, many PCOS related tests, and all the pituitary hormones. We had to do the following cortisol testing: three consecutive late-night saliva tests, two 24 hour urine tests one week apart, and an 8 am cortisol test. We did all the tests except the 8 am blood draw in February-March and now we're doing them all again. The doctor said cortisol is released in pulses so you can get normal levels on tests, but continued testing will reveal very high levels if it's really Cushings.

 

I can't remember if I told you that I've read neurosurgeons are very particular where the MRI is done. And our neuro-endocrinologist told us where and when to get the next MRI. When I scheduled, they told me it's because a certain doctor is duty reading the MRIs as they are being done.

[BlessedMom]

((((((Hugs)))))) and prayers!

[Guest2]

Praying.

[TianXiaXueXiao]

(((Tiramisu))) and (((Sugarfoot))) Praying for you and your children. Lord have mercy.

[Sugarfoot]

(((Tiramisu))) and (((Sugarfoot))) Praying for you and your children. Lord have mercy.

Thank you!

 

I was basically told the same thing. Go to a neuro-endocrinologist to get the tests and then be in touch again if you get a diagnosis. I had a neurosurgeon look at the medical records and agreed that some symptoms would fit for Cushing's. He also looked at the MRI and told me exactly where the tumor was and its size. That alone was reassuring.

 

I can't remember what I mentioned up-thread, but we got the MRI locally. The endocrinologist that ordered it first suggested Cushings after he felt the results did not indicate a prolactinoma, and given my dd's symptoms. He is part of fairly well-regarded local hospital system, but he felt, considering my dd's age and that this could affect her long-term, that we should go to a better "institution" for her care. So I made an appointment with the university hospital system which is the most highly regarded in our region for brain surgery.

 

It is true that they don't do brain surgery unless they really have to. When my dd's tumor was discovered, a priest friend put us in touch with another family who had a child with a brain tumor. They watched her for several years and there were no issues. Eventually, the dd started having language problems and they had to get the surgery. By then she was physically grown and did extremely well with the surgery and recovery. In her case, they did not go through the nose. I'm sure there are even more who never experience a change and never need surgery. I've read again and again--and the neurosurgeon said the same thing--that a lot of people have pituitary tumors that don't cause problems and they never know it. Of course, when we have kids with health problems, it's quite a bit scarier.

 

So far the first endocrinologist ordered a few specialized prolactin tests that would rule out falsely high and falsely low prolactin levels. The second endocrinologist, who is part of a pituitary center, ordered many thyroid tests, many PCOS related tests, and all the pituitary hormones. We had to do the following cortisol testing: three consecutive late-night saliva tests, two 24 hour urine tests one week apart, and an 8 am cortisol test. We did all the tests except the 8 am blood draw in February-March and now we're doing them all again. The doctor said cortisol is released in pulses so you can get normal levels on tests, but continued testing will reveal very high levels if it's really Cushings.

 

I can't remember if I told you that I've read neurosurgeons are very particular where the MRI is done. And our neuro-endocrinologist told us where and when to get the next MRI. When I scheduled, they told me it's because a certain doctor is duty reading the MRIs as they are being done.

This is very interesting. My DS has done the saliva test twice, but never a 3-night series. He's done the 24-hour urinalysis twice. I need to ask about the further prolactin testing, especially since it was so high before. I have this feeling that he may be "cycling" with his cortisol. I know this is really hard to catch, and I'd like to do 30 days of saliva testing in a row to see what happens. It sounds like your Dr. is more open to the possibilities than ours. I'm going to insist on doing the labs more than once every few months. 

 

I hope you get helpful answers soon. 

[texasmama]

Hugs and prayers to you, Tiramisu.

[Donna]

:grouphug: Praying.

[Tiramisu]

Saliva tests done over the weekend. 

MRI done this morning. 

One 24 hour urine to go!

 

The follow up is not until the end of the month. That's a long wait with the CD of the MRI in my medical folder.

[Mommy22alyns]

Praying for you guys.

[Seasider]

Is the follow up late because that amount of time is necessary to process the lab work? Or is there hope that a sooner appointment may become available?

[Tiramisu]

Is the follow up late because that amount of time is necessary to process the lab work? Or is there hope that a sooner appointment may become available?

 

The doctor is booked up. But I'm fairly certain that if the test results come back indicating a serious development, we'd be called in earlier.

 

When we first saw this doctor, we had a wait. During that time, we forwarded dd's test results to her as requested. They called us with offers of earlier appointments once they saw her records. The same thing could happen again.

[Sugarfoot]

Saliva tests done over the weekend. 

MRI done this morning. 

One 24 hour urine to go!

 

The follow up is not until the end of the month. That's a long wait with the CD of the MRI in my medical folder.

 

Is your DD sedated for the MRI? My DS has to be sedated and then has a really hard time coming out of it. He's become pretty fearful of doing it again based on his memories of the previous times. Good luck with the 24-hour test. 

 

My DS threw up tonight after he went to sleep. :( 

[Tiramisu]

Is your DD sedated for the MRI? My DS has to be sedated and then has a really hard time coming out of it. He's become pretty fearful of doing it again based on his memories of the previous times. Good luck with the 24-hour test. 

 

My DS threw up tonight after he went to sleep. :(

 

I'm really sorry. That's must be so concerning.

 

I remember waking up from anesthesia as a child and crying. It's upsetting, and I don't blame him for feeling scared.

 

My dd is 20 now and she's been okay with MRIs. I worry about the contrast because she doesn't drink a lot and it's important to drink enough afterward to flush it out of the kidneys.

[Tiramisu]

Thank you!

 

This is very interesting. My DS has done the saliva test twice, but never a 3-night series. He's done the 24-hour urinalysis twice. I need to ask about the further prolactin testing, especially since it was so high before. I have this feeling that he may be "cycling" with his cortisol. I know this is really hard to catch, and I'd like to do 30 days of saliva testing in a row to see what happens. It sounds like your Dr. is more open to the possibilities than ours. I'm going to insist on doing the labs more than once every few months. 

 

I hope you get helpful answers soon. 

 

The specialized tests dd had were a macroprolactin test and a prolactin dilution test.

 

Prolactin levels can also be high if the tumor puts pressure on the pituitary stalk because the pituitary can't get the right feedback. So the first endo thought that would explain dd's high levels. Then the neuro-endo didn't agree with him, though. She didn't think there was any pressure on the stalk. The first endo was basing his opinion on the report but the neuro-endo looked at the images herself. I will be interesting to see what the report from the new MRI says because that will be written by a true brain specialist.

 

The first endo ordered an alpha subunit test which, I think, is supposed to be able to pick up some non-functioning pituitary adenomas.

 

The doctor who ordered the repeat cortisol test is a neuro-endocrinologist at a pituitary center that's part of a major university health system. She has a special interest in Cushings, too. 

[Kareni]

Sending positive thoughts your way, Tiramisu, and also to you, Gina. 

 

Regards,

Kareni

[Tiramisu]

UPDATE: The MRI looks good. There's been no change in the six months since the last MRI! The way he used to describe it seemed very clear that he does not think dd has a tumor, and he's identifying it as a cyst. Her pituitary, however, is enlarged, and the neuro-endocrinologist's nurse contacted me this morning to make sure the hormone tests have been done. So the investigation isn't over, but I'd say the worst has been ruled out. I'm relieved about that, and I hope the results of the testing we've done will be helpful in figuring out what's going on.

[Catwoman]

:party:

 

Thank you for the very encouraging update! :hurray:

[Tiramisu]

Another update. This one is a little unexpected. Dd has had some unusual looking thyroid results that I thought could be due to the pituitary issue. The endocrinologist wasn't paying much attention but continued to check her thyroid levels. Then her rheumatologist added more tests and the results came in that she has thyroid antibodies. Just something else to add to the mix.

[PrairieSong]

Still praying, Tiramisu.

[Jean in Newcastle]

:grouphug:

[happi duck]

(Hugs)

[Tammyla]

:grouphug:

[Sugarfoot]

The specialized tests dd had were a macroprolactin test and a prolactin dilution test.

 

Prolactin levels can also be high if the tumor puts pressure on the pituitary stalk because the pituitary can't get the right feedback. So the first endo thought that would explain dd's high levels. Then the neuro-endo didn't agree with him, though. She didn't think there was any pressure on the stalk. The first endo was basing his opinion on the report but the neuro-endo looked at the images herself. I will be interesting to see what the report from the new MRI says because that will be written by a true brain specialist.

 

The first endo ordered an alpha subunit test which, I think, is supposed to be able to pick up some non-functioning pituitary adenomas.

 

The doctor who ordered the repeat cortisol test is a neuro-endocrinologist at a pituitary center that's part of a major university health system. She has a special interest in Cushings, too. 

 

 

UPDATE: The MRI looks good. There's been no change in the six months since the last MRI! The way he used to describe it seemed very clear that he does not think dd has a tumor, and he's identifying it as a cyst. Her pituitary, however, is enlarged, and the neuro-endocrinologist's nurse contacted me this morning to make sure the hormone tests have been done. So the investigation isn't over, but I'd say the worst has been ruled out. I'm relieved about that, and I hope the results of the testing we've done will be helpful in figuring out what's going on.

 

Thanks for all of this information. I have been so confused about all of the test results that we get and the way they're interpreted. At one point, DS's prolactin level was so high they were sure it was a lab error and had it re-run. It came back even higher. Then 3 months later it was "normal." Sometimes it seems as though no one really understands everything that goes on in this part of the brain. The cyst conclusion is interesting. DS's doctors say they can't tell whether his is fluid-filled or solid. I wonder how something that is causing so many symptoms can be called "non-functioning." I understand it's based on specific hormone levels on labs only, but still.....

 

I'm so glad you're getting answers! As an aside, there's a woman in our church who was diagnosed with a prolactinoma at the same age your DD is. She said her headaches were unbearable. 

:grouphug:  :grouphug:  :grouphug:

[Tiramisu]

Thanks for all of this information. I have been so confused about all of the test results that we get and the way they're interpreted. At one point, DS's prolactin level was so high they were sure it was a lab error and had it re-run. It came back even higher. Then 3 months later it was "normal." Sometimes it seems as though no one really understands everything that goes on in this part of the brain. The cyst conclusion is interesting. DS's doctors say they can't tell whether his is fluid-filled or solid. I wonder how something that is causing so many symptoms can be called "non-functioning." I understand it's based on specific hormone levels on labs only, but still.....

 

I'm so glad you're getting answers! As an aside, there's a woman in our church who was diagnosed with a prolactinoma at the same age your DD is. She said her headaches were unbearable. 

:grouphug:  :grouphug:  :grouphug:

 

Yeah. Non-functioning adenomas can put pressure on things and cause problems. 

 

At least, my dd doesn't get headaches. Her body hurts. And she's gained a lot of weight. Her blood sugar and cholesterol levels have gone high. 

 

I'm a little peeved with the endocrinologist's office right now. They won't share the lab results with us until we have the appt at the end of the month. I'm really curious about her thyroid results and her reproductive hormone levels. They didn't test prolactin this time.

[Seasider]

Another update. This one is a little unexpected. Dd has had some unusual looking thyroid results that I thought could be due to the pituitary issue. The endocrinologist wasn't paying much attention but continued to check her thyroid levels. Then her rheumatologist added more tests and the results came in that she has thyroid antibodies. Just something else to add to the mix.

 

I know you don't want more complicating factors, BUT this is information. And it sounds like your doctors are actively engaged in seeking answers. I hope and pray with you that they soon find the root of the problem.