Aa
Pituitary Macro Adenoma and a Bone Tumor
Hello
Recently diagnosed with a pituitary macro adenoma it has gotten bigger within 1year and now 6months. Daily headaches, but they spike severely is that normal? None of the medicines help. 1 month ago also diagnosed with a bone tumor could this be related?
Thank you
Recently diagnosed with a pituitary macro adenoma it has gotten bigger within 1year and now 6months. Daily headaches, but they spike severely is that normal? None of the medicines help. 1 month ago also diagnosed with a bone tumor could this be related?
Thank you
I hope the surgeon explains things, as well as shows you the structure of the tumor.
I remember well my appointment as I sat there stunned, as well as did my husband, as they spoke about my tumor on the right and he showed it to us on the films and finally we showed him the old reports that showed him that I never had a tumor on the right, but only a tumor on the right - so WTF was that? Anyway, it was neat having the doc explain all the structures.
Most have an associated endo - does yours?
I remember well my appointment as I sat there stunned, as well as did my husband, as they spoke about my tumor on the right and he showed it to us on the films and finally we showed him the old reports that showed him that I never had a tumor on the right, but only a tumor on the right - so WTF was that? Anyway, it was neat having the doc explain all the structures.
Most have an associated endo - does yours?
Hello,
We are off to meet the Neuro-Surgeon for the fist time today. My nerves are bad for my daughter right now. Thanks for the comments and advise.
We are off to meet the Neuro-Surgeon for the fist time today. My nerves are bad for my daughter right now. Thanks for the comments and advise.
I have no idea, except that it is low with us - and that the better doctors check and treat for it.
My theory is that our bodies take a beating, so the minerals and vitamins drop. It is amazing sometimes how the hormones really effect so much - yet they are so overlooked.
My theory is that our bodies take a beating, so the minerals and vitamins drop. It is amazing sometimes how the hormones really effect so much - yet they are so overlooked.
You mentioned ferritin is an issue - how does it come into play with pituitary tumors, do you know?
Yes, many of us have the vitamin issues - ferratin is also an issue.
No, pituitary was only one - but I had pretty much all the other glands removed - thyroids, hysterectomy and a lot of other surgeries trying to save all that.
I used to head a department at an international bank. I was in charge of compliance for anti-money laundering and terrorist financing, so our department was in charge of tracking money that was used for criminal uses. It was a great, interesting job - but very stressful.
I had Cushing's - which is too much cortisol. The theory is that I probably had the neuro-muscular disease but was self-treating myself nicely with my own steroids nicely over-produced by my own tumor... once that source was cut off, all sorts of stuff came to light. For a couple of years, I did not even have the use of my shoulders... they still are not sure what or how to diagnose me. I am pretty much a worst case scenario though - I only know one other person like me.
At least the endo did not pretend - but the surgeon... surgeons are not the point persons... they are supposed to take the orders from the endo and the endo is supposed to call the shots. And the endo is the one that is supposed to follow you for life - so you still need a decent endo...
No, pituitary was only one - but I had pretty much all the other glands removed - thyroids, hysterectomy and a lot of other surgeries trying to save all that.
I used to head a department at an international bank. I was in charge of compliance for anti-money laundering and terrorist financing, so our department was in charge of tracking money that was used for criminal uses. It was a great, interesting job - but very stressful.
I had Cushing's - which is too much cortisol. The theory is that I probably had the neuro-muscular disease but was self-treating myself nicely with my own steroids nicely over-produced by my own tumor... once that source was cut off, all sorts of stuff came to light. For a couple of years, I did not even have the use of my shoulders... they still are not sure what or how to diagnose me. I am pretty much a worst case scenario though - I only know one other person like me.
At least the endo did not pretend - but the surgeon... surgeons are not the point persons... they are supposed to take the orders from the endo and the endo is supposed to call the shots. And the endo is the one that is supposed to follow you for life - so you still need a decent endo...
Thank you for your reply. Wow doesn't sound good to me she goes to the Neuro-Surgeon soon. I really hope he has some good and encouraging information. I really hope it can be cured by something simple and she can get on with her life and be pain free. It saddens me to see her in pain. The Dr. thinks a lot of her symptoms are caused by the tumor.
That's high doses of Vitamin D also. So did you have vitamin issues before your tumor was taken out?
I am sorry to hear your tumor grew back. Oh my gosh that's a lot of surgery's was it all pituitary surgery's? I understand on the cannot figure out part. It is very hard when you can't get answers for what is going on. It would make things easier just knowing at least you can get help and treatment etc....it's like you can move on. I am sorry you can't work now. What kind of job did you have if you don't mind me asking? iIs your neuro-muscular issue because of something else.
I would like to know the Dr and some other people if you don't mind. I took my daughter to a Endocrinologist he didn't seem to knowledgeable about pituitary tumors he referred me to talking to the Neuro-Surgeon. So I will ask him.
Have a good day and talk to you soon. Thank you again.
That's high doses of Vitamin D also. So did you have vitamin issues before your tumor was taken out?
I am sorry to hear your tumor grew back. Oh my gosh that's a lot of surgery's was it all pituitary surgery's? I understand on the cannot figure out part. It is very hard when you can't get answers for what is going on. It would make things easier just knowing at least you can get help and treatment etc....it's like you can move on. I am sorry you can't work now. What kind of job did you have if you don't mind me asking? iIs your neuro-muscular issue because of something else.
I would like to know the Dr and some other people if you don't mind. I took my daughter to a Endocrinologist he didn't seem to knowledgeable about pituitary tumors he referred me to talking to the Neuro-Surgeon. So I will ask him.
Have a good day and talk to you soon. Thank you again.
Anytime you get a tumor that is around the optic nerve, there is only so far the doc can cut before they risk cutting too close to the optic nerve - this is also why you want the best surgeon. Even sometimes inexperienced surgeons with small tumors hits the optic nerve (rare now) or even the carotids.
As well, if I can describe it without pictures.... the pituitary is pretty small anyway, and your daughter's tumor has grown up and out of a small bony pocket to to a region the that contains optic nerve and so that requires radiation.
There is also an issue if the tumor grows down, into a place where there are the nerves and blood vessels that serve the rest of the brain. That is the cavernous sinus region.
I takes 2000 to 3000iu of D3 a day and still stay at the low end. Most of my pit buddies are low. Some take the 50,000iu pill once a week.
The doctor I told you about treated a child that was born with Cyclical Cushing's. I can point you towards other parents if you like. It is not normal to get big that fast.
It is treatable, but she may end up panhypopituitary - which like me, means she will have to replace most if not all of her hormones. It puts a crimp on the life style and is expensive.
Get copies of everything.
My tumor grew back. I hate to tell you but I am disabled - but I have most of my glands removed, 12 operations etc. and a neuro-muscular issue that they cannot figure out - I am a medical mystery (unwilling). Most of my friends can work and function well pretty though. I used to have a great job.
As well, if I can describe it without pictures.... the pituitary is pretty small anyway, and your daughter's tumor has grown up and out of a small bony pocket to to a region the that contains optic nerve and so that requires radiation.
There is also an issue if the tumor grows down, into a place where there are the nerves and blood vessels that serve the rest of the brain. That is the cavernous sinus region.
I takes 2000 to 3000iu of D3 a day and still stay at the low end. Most of my pit buddies are low. Some take the 50,000iu pill once a week.
The doctor I told you about treated a child that was born with Cyclical Cushing's. I can point you towards other parents if you like. It is not normal to get big that fast.
It is treatable, but she may end up panhypopituitary - which like me, means she will have to replace most if not all of her hormones. It puts a crimp on the life style and is expensive.
Get copies of everything.
My tumor grew back. I hate to tell you but I am disabled - but I have most of my glands removed, 12 operations etc. and a neuro-muscular issue that they cannot figure out - I am a medical mystery (unwilling). Most of my friends can work and function well pretty though. I used to have a great job.
Hello,
Her TSH has been at 7. then 3rd gen 0.016 then 0.012 Wow I didn't know Vitamin D was a symptom of pituitary. How much vitamin D do you take a day?
No I don't know what kind of tumor. How do they find out what kind of tumor? Neuro-Oncology Dr. said in Aug. 09 Pubertal Hypertrophy vs. Non-Functioning Adenoma vs. Germ Cell Tumor keep close eye and re-scan in 4-6 months, BUT Then within 1 month Sept 09 radiologist re-read the scan and said Pituitary Macro Adenoma (they have NEVER said Micro), but we didn't know this as our insurance changed and nobody called us. She had another MRI done Feb. by a new Dr. it has extended into the Suprasellar and Optic Chiasm they said it is bigger than in Aug. Do they grow that fast? Why did my daughters get big fast esp. within 6 months? Is that normal? How did they miss the tumor? The new Neurologist is very concerned and referred her to a Neuro-surgeon that's all I know right now.
Have I mentioned I am frustrated.....I am also kinda scared for my daughter. I want to get her to the best Dr. I will see how this new Dr. is, but how do you know your Dr. is a good one. I read that you need to find one that deals with Pituitary tumors because not all of them do. Where do you find good Dr.'s Neuro-Endocrinologist and Neuro-Surgeon? Did you say that it was treatable, but because now it is a Macro Adenoma it will be harder to treat? How do you know she will have to have radiation? Is there any way around that? What else will they do? What questions would you ask the Surgeon? Sorry about all the questions, but I am worried about my daughter and don't know what to expect or say.
Thank you so much you are helping me a lot.
What kind of tumor did you have? What symptoms? Are you better now? Did they get all of yours? Thanks again
Her TSH has been at 7. then 3rd gen 0.016 then 0.012 Wow I didn't know Vitamin D was a symptom of pituitary. How much vitamin D do you take a day?
No I don't know what kind of tumor. How do they find out what kind of tumor? Neuro-Oncology Dr. said in Aug. 09 Pubertal Hypertrophy vs. Non-Functioning Adenoma vs. Germ Cell Tumor keep close eye and re-scan in 4-6 months, BUT Then within 1 month Sept 09 radiologist re-read the scan and said Pituitary Macro Adenoma (they have NEVER said Micro), but we didn't know this as our insurance changed and nobody called us. She had another MRI done Feb. by a new Dr. it has extended into the Suprasellar and Optic Chiasm they said it is bigger than in Aug. Do they grow that fast? Why did my daughters get big fast esp. within 6 months? Is that normal? How did they miss the tumor? The new Neurologist is very concerned and referred her to a Neuro-surgeon that's all I know right now.
Have I mentioned I am frustrated.....I am also kinda scared for my daughter. I want to get her to the best Dr. I will see how this new Dr. is, but how do you know your Dr. is a good one. I read that you need to find one that deals with Pituitary tumors because not all of them do. Where do you find good Dr.'s Neuro-Endocrinologist and Neuro-Surgeon? Did you say that it was treatable, but because now it is a Macro Adenoma it will be harder to treat? How do you know she will have to have radiation? Is there any way around that? What else will they do? What questions would you ask the Surgeon? Sorry about all the questions, but I am worried about my daughter and don't know what to expect or say.
Thank you so much you are helping me a lot.
What kind of tumor did you have? What symptoms? Are you better now? Did they get all of yours? Thanks again
Hello,
Her TSH has been at 7. then 3rd gen 0.016 then 0.012 Wow I didn't know Vitamin D was a symptom of pituitary. How much vitamin D do you take a day?
No I don't know what kind of tumor. How do they find out what kind of tumor? Neuro-Oncology Dr. said in Aug. 09 Pubertal Hypertrophy vs. Non-Functioning Adenoma vs. Germ Cell Tumor keep close eye and re-scan in 4-6 months, BUT Then within 1 month Sept 09 radiologist re-read the scan and said Pituitary Macro Adenoma (they have NEVER said Micro), but we didn't know this as our insurance changed and nobody called us. She had another MRI done Feb. by a new Dr. it has extended into the Suprasellar and Optic Chiasm they said it is bigger than in Aug. Do they grow that fast? Why did my daughters get big fast esp. within 6 months? Is that normal? How did they miss the tumor? The new Neurologist is very concerned and referred her to a Neuro-surgeon that's all I know right now.
Have I mentioned I am frustrated.....I am also kinda scared for my daughter. I want to get her to the best Dr. I will see how this new Dr. is, but how do you know your Dr. is a good one. I read that you need to find one that deals with Pituitary tumors because not all of them do. Where do you find good Dr.'s Neuro-Endocrinologist and Neuro-Surgeon? Did you say that it was treatable, but because now it is a Macro Adenoma it will be harder to treat? How do you know she will have to have radiation? Is there any way around that? What else will they do? What questions would you ask the Surgeon? Sorry about all the questions, but I am worried about my daughter and don't know what to expect or say.
Thank you so much you are helping me a lot.
What kind of tumor did you have? What symptoms? Are you better now? Did they get all of yours? Thanks again
Her TSH has been at 7. then 3rd gen 0.016 then 0.012 Wow I didn't know Vitamin D was a symptom of pituitary. How much vitamin D do you take a day?
No I don't know what kind of tumor. How do they find out what kind of tumor? Neuro-Oncology Dr. said in Aug. 09 Pubertal Hypertrophy vs. Non-Functioning Adenoma vs. Germ Cell Tumor keep close eye and re-scan in 4-6 months, BUT Then within 1 month Sept 09 radiologist re-read the scan and said Pituitary Macro Adenoma (they have NEVER said Micro), but we didn't know this as our insurance changed and nobody called us. She had another MRI done Feb. by a new Dr. it has extended into the Suprasellar and Optic Chiasm they said it is bigger than in Aug. Do they grow that fast? Why did my daughters get big fast esp. within 6 months? Is that normal? How did they miss the tumor? The new Neurologist is very concerned and referred her to a Neuro-surgeon that's all I know right now.
Have I mentioned I am frustrated.....I am also kinda scared for my daughter. I want to get her to the best Dr. I will see how this new Dr. is, but how do you know your Dr. is a good one. I read that you need to find one that deals with Pituitary tumors because not all of them do. Where do you find good Dr.'s Neuro-Endocrinologist and Neuro-Surgeon? Did you say that it was treatable, but because now it is a Macro Adenoma it will be harder to treat? How do you know she will have to have radiation? Is there any way around that? What else will they do? What questions would you ask the Surgeon? Sorry about all the questions, but I am worried about my daughter and don't know what to expect or say.
Thank you so much you are helping me a lot.
What kind of tumor did you have? What symptoms? Are you better now? Did they get all of yours? Thanks again
How high is her TSH?
The low D is caused by her pituitary - many of us take lots of D3 to make up for it. Make sure you give her D3 not D2 to replace what she needs.
Have they determined the type of tumor? What you are saying sounds like a non-functioning (which is very, very poorly named as it is anything but) or Cushing's disease with the weight gain and bone issues.
She needs a better doctor PRONTO! The tumor was where it was treatable with surgery, now she will need radiation, and will need more invasive treatments and medications.
Alas, this is why I advocate always getting a copy of everything.
The low D is caused by her pituitary - many of us take lots of D3 to make up for it. Make sure you give her D3 not D2 to replace what she needs.
Have they determined the type of tumor? What you are saying sounds like a non-functioning (which is very, very poorly named as it is anything but) or Cushing's disease with the weight gain and bone issues.
She needs a better doctor PRONTO! The tumor was where it was treatable with surgery, now she will need radiation, and will need more invasive treatments and medications.
Alas, this is why I advocate always getting a copy of everything.
Hello thank you for your reply,
This is for my daughter. She has had blood work done since age 5 because of excessive weight gain. TSH blood work was abnormal high, but because of the other labs being normal nothing was done except wait and watch. Then bone scan done which showed 2 1/2 years advanced bone growth age. Then she went into precocious puberty still nothing done just wait and watch. They said she had enlarged pituitary, but said it was because of puberty. Lots of symptoms consistent with a thyroid problem, but because not all labs were abnormal at the same time or they were intermittent abnormal they didn't do anything. They kept saying she is tall because she is "FAT", but dietitian said I was feeding her everything right. They said her labs were abnormal maybe because of her seizure medicine, so watch and wait some more. She has severe headaches which medicine does not work so the Dr.'s said she was lying about the pain. Rescanned pituitary it just keeps getting bigger. She is 15 her growth plates are still open, but for some reason she hasn't grown in 3 1/2 years weird and her periods are abnormal.
Nope never been diagnosed with a Micro Adenoma. I have the MRI report and it says Pituitary Macro Adenoma which I didn't know about till I got a copy of the report our insurance changed and the Dr. never called to tell me. Now it is extending into the Suprasellar region and elevating the optic Chiasm. The newest MRI scan doesn't have the measurements, but the other scan measured at 9.8x11.3x17.3mm it also said that the pituitary stalk had thickened what ever that means. There have been blood tests done since age 5 and for some reason they have always been either normal or intermittent abnormal levels. TSH FTI T4 and FT4. It is confusing to me. Never been treated with medicine just always watched blood work and pituitary.
She is Vitamin D deficient pretty bad they said she is on 10 times RDA and blood levels are still on the lower end of normal. Can pituitary cause that? She sprained her ankle again they did MRI on the ankles and that's when they found the non-cancerous bone tumor they said not to worry about it. She has already had surgery on both ankles because of numerous breaks/sprains. No biopsy has been done they will rescan in 4-6 months. She has never had a bone density done.
I am VERY concerned for my daughter she has a lot of Nystagmus now and also hand tremors. Her vision has gotten worse within the last few months the eye Dr. said it is because of her age.
She has never been to a Neuro-endocrinologist her previous pediatrician said he had never heard of one. We have new Dr.'s now.
We have been waiting for an appt with a Neuro-surgeon they scheduled it for the middle of April. I'm not sure what to expect. Thank you
This is for my daughter. She has had blood work done since age 5 because of excessive weight gain. TSH blood work was abnormal high, but because of the other labs being normal nothing was done except wait and watch. Then bone scan done which showed 2 1/2 years advanced bone growth age. Then she went into precocious puberty still nothing done just wait and watch. They said she had enlarged pituitary, but said it was because of puberty. Lots of symptoms consistent with a thyroid problem, but because not all labs were abnormal at the same time or they were intermittent abnormal they didn't do anything. They kept saying she is tall because she is "FAT", but dietitian said I was feeding her everything right. They said her labs were abnormal maybe because of her seizure medicine, so watch and wait some more. She has severe headaches which medicine does not work so the Dr.'s said she was lying about the pain. Rescanned pituitary it just keeps getting bigger. She is 15 her growth plates are still open, but for some reason she hasn't grown in 3 1/2 years weird and her periods are abnormal.
Nope never been diagnosed with a Micro Adenoma. I have the MRI report and it says Pituitary Macro Adenoma which I didn't know about till I got a copy of the report our insurance changed and the Dr. never called to tell me. Now it is extending into the Suprasellar region and elevating the optic Chiasm. The newest MRI scan doesn't have the measurements, but the other scan measured at 9.8x11.3x17.3mm it also said that the pituitary stalk had thickened what ever that means. There have been blood tests done since age 5 and for some reason they have always been either normal or intermittent abnormal levels. TSH FTI T4 and FT4. It is confusing to me. Never been treated with medicine just always watched blood work and pituitary.
She is Vitamin D deficient pretty bad they said she is on 10 times RDA and blood levels are still on the lower end of normal. Can pituitary cause that? She sprained her ankle again they did MRI on the ankles and that's when they found the non-cancerous bone tumor they said not to worry about it. She has already had surgery on both ankles because of numerous breaks/sprains. No biopsy has been done they will rescan in 4-6 months. She has never had a bone density done.
I am VERY concerned for my daughter she has a lot of Nystagmus now and also hand tremors. Her vision has gotten worse within the last few months the eye Dr. said it is because of her age.
She has never been to a Neuro-endocrinologist her previous pediatrician said he had never heard of one. We have new Dr.'s now.
We have been waiting for an appt with a Neuro-surgeon they scheduled it for the middle of April. I'm not sure what to expect. Thank you
Are you sure it is not a micro-adenoma? If micro, I can sort of understand the wait, but not the testing, if macro, the doctor needs to be reported to the medical board for negligence.
Do yourself a favor and get a copy of the MRI report and any lab reports. Then go to another doctor. It should be a neuro-endocrinologist. You should NOT be left to wait for 6 months to wait. Frankly, the MRI is the least useful test and you need to get the lab tests to indicate what kind of tumor it is so it can be treated. I assume you went to the doctor because you had symptoms and it is silly to just sit around and wait. Get testing now. It is going to take time anyway.
Depending on the type of tumor, it may impact the other tumor - so it may not be related, but you still need to know the type as many of them will impact bone density and that may impact the tumor or at least your bone health.
Do yourself a favor and get a copy of the MRI report and any lab reports. Then go to another doctor. It should be a neuro-endocrinologist. You should NOT be left to wait for 6 months to wait. Frankly, the MRI is the least useful test and you need to get the lab tests to indicate what kind of tumor it is so it can be treated. I assume you went to the doctor because you had symptoms and it is silly to just sit around and wait. Get testing now. It is going to take time anyway.
Depending on the type of tumor, it may impact the other tumor - so it may not be related, but you still need to know the type as many of them will impact bone density and that may impact the tumor or at least your bone health.
Hello, no diagnosed enlarged pituitary, then a macro adenoma. I don't know what type of pituitary tumor they haven't said only pituitary macro adenoma. No the bone tumor is in another part of the body. The Dr. said it's not related and not to worry, so I am please. It's a non-cancerous bone tumor. They are going to re-scan in 6months.
Were you diagnosed initially with a micro that grew to a macro in 6 mos - or did you have a macro to begin with?
If you had the macro to begin with, report the doc to the state medical board, find another ASAP.
Is the bone tumor right next to it? What type is it? there are certain bone disorders that are associated with certain pituitary tumors - but not enough information here (pit tumor or bone tumor types).
If you had the macro to begin with, report the doc to the state medical board, find another ASAP.
Is the bone tumor right next to it? What type is it? there are certain bone disorders that are associated with certain pituitary tumors - but not enough information here (pit tumor or bone tumor types).
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
