Aa
inactive pituitary tumor
Having a inactive pituitary, what does that mean. The tumor has to be pressing on things it shouldn't. My eyes are affected, smell and hearing I think, can't figure out where some sounds are coming from.
You may be having a non-functioning pituitary lesion, however, you are suffering mass effect symptoms and your lesion needs to be removed as soon as possible. However, I would get copies of your MRI and your testing and send it around to experienced surgeons as likely at least one part of your tumor is inoperable (the part near your optic nerves) and you need to see if you have part in your cavernous sinus which would also be inoperable. This type of tumor - which is likely greater than 10mm takes special handling and needs a very expeirenced pituitary center to not only do the surgery but take care of your hormonal needs after surgery.
Please get copies of your MRI report and any testing you have, read up and let us know what you have. You may need surgery, and possibly radiation - that can depend on the pathology of the tumor as it may stain (be a hormone secreting tumor) and can be treated with medication - so it really takes a good team to really know what is going on.
I had a couple of tumors.
Please get copies of your MRI report and any testing you have, read up and let us know what you have. You may need surgery, and possibly radiation - that can depend on the pathology of the tumor as it may stain (be a hormone secreting tumor) and can be treated with medication - so it really takes a good team to really know what is going on.
I had a couple of tumors.
Any tumor is serious. You might want to try AHCC, along with eating cottage cheese with organic flax seed oil. Grapes, grapes, grapes. A diet free of any chemicals. Know each chemical you put in your body. Start research 'Healing cancer with foods.' Only eat fresh fruit and fresh vegetables, no red meats, hormone-free chickens, wild fish, food-based vitamins/minerals with extra calcium and magnesium. Alkalize your body. No breads..it has yeast (and chemicals) and yeast is one of the basis for cancer. Drink plenty of spring water...you might want to detox. Dr. Schulze's has a 3 or 7 day all natural pill detox. Probiotics from health food refrigerated section will help your body fight. You might want to take Caprillic Acid to help eliminate the fungus in your body. Hope this helps!
Things I have is fibromyalgia (all that goes with it), memopause (real bad hot flashes), had a mini stroke couple years ago, immune deficiency which is in normal range but was killing me, take vivaglobin weekly for that. Blood work just showed a normal but low T 4. Doctor said not to worry but I am. can't loose weight, tired all the time. I thought my symptons was because in the last year I have lost a Mother, Sister and Dad a few weeks ago, have had 5 deaths in all in the last year.
I get a MRI and thorough eye exam yearly. If my eyes start to get bad the tumor is growing and if I get a real bad headache get to Nashville, TN asap as it is probably a brain bleed. The tumor would be more dangerous to operate than leave it alone, they say, and you worry too much about it when I ask if other test are on the low side.
Thanks for the information, will give it a try. Yeast info sounds good too. Have high risk for breast cancer.
Thanks again.
I get a MRI and thorough eye exam yearly. If my eyes start to get bad the tumor is growing and if I get a real bad headache get to Nashville, TN asap as it is probably a brain bleed. The tumor would be more dangerous to operate than leave it alone, they say, and you worry too much about it when I ask if other test are on the low side.
Thanks for the information, will give it a try. Yeast info sounds good too. Have high risk for breast cancer.
Thanks again.
Oh man-
So sorry about the loss that you've had to deal with this last year. I could see how your grieving would make it hard to know what is what.
One thing that I know for sure is that there are a lot of endocrinologists who do not have the skills to treat patients like us. I've seen it so much in forums like this.
In the US there are really only about 20 good pituitary doctors. And unfortunately they are not in TN. (or Hawaii where I live)
I think that you would really benefit from seeing a top rated neuroendocrinologist and neurosurgeon. You might be a surgical candidate.
Also your hormones are not being treated either it seems. A low normal t4 means that you have not even had proper thyroid testing. The standard is to look at your Free T3 along with your symptoms.
Your fatigue, weight gain, headaches, fibromyalgia etc.in a pituitary patient is clasic and means that you are low, low, low in probably most of your hormones.
You could feel so much better on replacement.
What more do you know about your tumor? size wise etc.
Horselip
So sorry about the loss that you've had to deal with this last year. I could see how your grieving would make it hard to know what is what.
One thing that I know for sure is that there are a lot of endocrinologists who do not have the skills to treat patients like us. I've seen it so much in forums like this.
In the US there are really only about 20 good pituitary doctors. And unfortunately they are not in TN. (or Hawaii where I live)
I think that you would really benefit from seeing a top rated neuroendocrinologist and neurosurgeon. You might be a surgical candidate.
Also your hormones are not being treated either it seems. A low normal t4 means that you have not even had proper thyroid testing. The standard is to look at your Free T3 along with your symptoms.
Your fatigue, weight gain, headaches, fibromyalgia etc.in a pituitary patient is clasic and means that you are low, low, low in probably most of your hormones.
You could feel so much better on replacement.
What more do you know about your tumor? size wise etc.
Horselip
I had Cushing's and it caused me to have a bleeding disorder as well as a low immune system (they kept checking me for HIV!) and I was diagnosed the fibro as well. Just letting you know that those tiny little tumors can wreak havoc on other systems and cause a lot of the other symptoms.
Sorry about your losses.
Sorry about your losses.
just having someone that knows what I'm talking about is great. I will be getting a MRI December 13th. The size has been 8mm the best I remember.
Thank you
Thank you
Have a great MRI-
And yes, unfortunately you are not alone. There are a lot of us pituitary patients out here in the world.
Horsey
And yes, unfortunately you are not alone. There are a lot of us pituitary patients out here in the world.
Horsey
life as a pituitary patient is not easy in a world full of those who havent researched the pituitary.
gl on the mri
gl on the mri
I've heard about drug stores that do lab work and treat patients for what ever shortage.
Am I hoping or is there drug store that do that and how safe would that be? Know anyone that has tried the treatment. That seems to be better than what I'm getting.
Thanks
msprissy464
Am I hoping or is there drug store that do that and how safe would that be? Know anyone that has tried the treatment. That seems to be better than what I'm getting.
Thanks
msprissy464
Hi-
I've never heard of drug stores doing lab work. Can you be more specific?
They do vaccines. I'm thinking that you need to go somewhere UCLA, UCSF, Stanford, Cleveland Clinic, Mass General, Brigham and Women's in Boston or?
The Pituitary Network Association is http://www.pituitary.org/intro.aspx they have a listing of doctors that is a starting place. You need the real deal if your eyes are being affected.
Horselip
I've never heard of drug stores doing lab work. Can you be more specific?
They do vaccines. I'm thinking that you need to go somewhere UCLA, UCSF, Stanford, Cleveland Clinic, Mass General, Brigham and Women's in Boston or?
The Pituitary Network Association is http://www.pituitary.org/intro.aspx they have a listing of doctors that is a starting place. You need the real deal if your eyes are being affected.
Horselip
that you so much the site. Just went there but wanted to get back with you to say thanks. The drug stores is something I heard on Oprah a few months ago. It would have just been on hormones. Then again I'm not sure what all is considered hormones.
again. Thank you msprissy 464
again. Thank you msprissy 464
Hormones is a word tossed around a lot - and it has broad meaning. In your case, you are in need of checking the hormones effected by the pituitary and then any hormones effected by the HPA axis - it can get very technical. It also can effect almost any part of the body from the skin to the kidneys to the eyes to the heart to the blood etc.
Non-secreting tumors means the tumor itself is not secreting a hormone - but it has lots of symptoms from mass effect and from pressure on the pituitary and can cause hormonal issues from the pressure on the pituitary and optic issues from pressure on the optic nerve.
You need a neuro-endocrinologist to help you.
Non-secreting tumors means the tumor itself is not secreting a hormone - but it has lots of symptoms from mass effect and from pressure on the pituitary and can cause hormonal issues from the pressure on the pituitary and optic issues from pressure on the optic nerve.
You need a neuro-endocrinologist to help you.
I have a endocrinologist, my questions upset him really bad. He said I had nothing to worry about everything is checking out on your blood work. I didn't really believe him but after 3 or 4 doctors says your worring about nothing and all the deaths in the family it has been easier to think they are right.
Thanks
msprissy464
Thanks
msprissy464
Hmmm... can you go to a different doctor? Can you get a copy of your tests?
You see, most endocrine diseases cannot be ruled in, or out, with one or two tests - the endocrine system is very very complex and has all these feedback loops and it is hard to figure out what is the source of the issue. If you have a large tumor that is effecting your eyes - NO MATTER WHAT - that tumor needs to be treated. So your doctor is wrong - wrong wrong wrong. He can cause you to lose your vision forever if action is not taken. So you need to find a pituitary center somewhere and get treatment of your tumor. I had two pituitary tumors and I was told to ignore mine too - and it was very very bad advise. People think that the tumors are small - well they kind of are - but they are squished in a very small place and on a the gland that controls most of everything in your body plus they can make you blind or cause a stroke - so while the tumor is not cancer, it can kill you. Doctors may not be skilled in these tumors, but you need treatment. I don't want to scare you. but you need to get help. Please read up, contact the people on the pituitary.org website if you don't trust me.
You see, most endocrine diseases cannot be ruled in, or out, with one or two tests - the endocrine system is very very complex and has all these feedback loops and it is hard to figure out what is the source of the issue. If you have a large tumor that is effecting your eyes - NO MATTER WHAT - that tumor needs to be treated. So your doctor is wrong - wrong wrong wrong. He can cause you to lose your vision forever if action is not taken. So you need to find a pituitary center somewhere and get treatment of your tumor. I had two pituitary tumors and I was told to ignore mine too - and it was very very bad advise. People think that the tumors are small - well they kind of are - but they are squished in a very small place and on a the gland that controls most of everything in your body plus they can make you blind or cause a stroke - so while the tumor is not cancer, it can kill you. Doctors may not be skilled in these tumors, but you need treatment. I don't want to scare you. but you need to get help. Please read up, contact the people on the pituitary.org website if you don't trust me.
The problem is I DO TRUST YOU. I'm not sure if I know what normal is. It has been hard to communicate sometimes for years, things don't always stick, if the day starts out not so well forget trying to learn anything new or hear what is being said. I'm learning line dancing.
Had to express milk from breast for years, (20 years?) had to, to release the pain. Doctors would say just stop that. Stabs of pain will go through my head at times but not enough to take pain meds as it goes away as soon as it happens several times a day. Did have a mini stroke a couple years ago, during this time the nurse intern was checking my immune system which was normal but low. I really thought I was going to die. I keep telling the doctors one size does not fit all.
Had to express milk from breast for years, (20 years?) had to, to release the pain. Doctors would say just stop that. Stabs of pain will go through my head at times but not enough to take pain meds as it goes away as soon as it happens several times a day. Did have a mini stroke a couple years ago, during this time the nurse intern was checking my immune system which was normal but low. I really thought I was going to die. I keep telling the doctors one size does not fit all.
They can give you medication to dry you up and BTW - that is a symptom of your tumor! My immune system is also super low and during my tumor days, they used to check me for HIV all the time as my healing was so poor (all negative - but it was nasty that they never believed me!).
The docs are thinking your expressing is causing the milk but the milk is caused by the tumor - so your docs are just not up on pituitary tumors. You may have to travel.
BTW, the tumors do cause depression and do mess with the mind - it makes things harder that when you need someone to fight for you, you have to step up, when you are least capable.
The docs are thinking your expressing is causing the milk but the milk is caused by the tumor - so your docs are just not up on pituitary tumors. You may have to travel.
BTW, the tumors do cause depression and do mess with the mind - it makes things harder that when you need someone to fight for you, you have to step up, when you are least capable.
you are so right about taking care of yourself. I think sometimes I need someone else to go with me and tell them what's bothering me. LOL
What test did you tell me to insist on with the blood work and thyroid?
I have not had to express milk for sometime now, but looking back that was part of the pituitary, stopped telling any new doctors got tired of them telling me to stop or you need nerve meds, your crazy.
Having brain fog so can't function fully the last few days.
Appreciate you help
msprissy464
What test did you tell me to insist on with the blood work and thyroid?
I have not had to express milk for sometime now, but looking back that was part of the pituitary, stopped telling any new doctors got tired of them telling me to stop or you need nerve meds, your crazy.
Having brain fog so can't function fully the last few days.
Appreciate you help
msprissy464
Thank you both your help. I just realized I had not responded to you.
msprissy464
msprissy464
I often took someone with me to appointments - but then they ask how much I drink, if I do drugs etc - really! Like I do this to myself... so we all get the crazy, liar, overeating thing.
Do Free T3, Free T4, TSH, antibodies - that will at least give what the thyroid is doing. The TSH is a pituitary test and plain T4 is not as useful as the free tests.
Do Free T3, Free T4, TSH, antibodies - that will at least give what the thyroid is doing. The TSH is a pituitary test and plain T4 is not as useful as the free tests.
Thanks for the imformation. When I was younger my hormones was out of whack, as I got older it was your touched so here are some pills. If the meds make me fatter or in the twilight zone I won't take them and I tell them this. Was trying to keep all records from each doctor but it was like, they looked to be polite but.....
Again Thanks
msprissy464
Again Thanks
msprissy464
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Having an inactive pituitary gland means that it is not making and storing the hormones that it is supposed to. I listed these at the end for you.
And no, yours does not sound inactive to me!
Some adenomas secrete hormones like prolactin or ACTH. Where others don't secrete. They call the non secreting adenomas "non-functioning". Regardless all can wreak havoc... or not. It depends on how yours' behaves itself. They can grow into other structures like the optic nerves, carotid arteries, block pituitary gland function, and cause blindness.
These are the hormones that the Pituitary gland makes:
Growth hormone
Thyroid-stimulating hormone
Adrenocorticotropic hormone
Prolactin
Luteinizing hormone
Follicle-stimulating hormone
Antidiuretic hormone
Oxytocin
Pituitary patients can lose the ability to make one or all of these hormones. They are replaceable but I don't personally think that replacement is the same as the real deal.
So what hormones are you having problems with?
Horselip