Author Topic: pituitary macro adenoma ... anyone else had'have one?  (Read 17622 times)

Offline ruhamah

  • Adept
  • Posts: 96
pituitary macro adenoma ... anyone else had'have one?
« on: March 19, 2008, 02:18:12 AM »
I have looked this one up and could not find a thread on it so here goes.

Pit macro aden. is simple a fancy way of saying a large tumor on you pituitary gland.

I was wondering if any of the other ladies on WTM have or had this...?

It is rare.

I had mine discovered when I was 25, very very young to find one, and had it removed but still have alot of complications because of it.

I was wondering if anyone else has one or has had their's removed and what it was like for you.

My tumor was not a nice one it was growing into the pit. gland so I had to have part of the gland itself removed with the tumor. Now when I have MRI's they always show a much smaller pit gland.

Problems since surgery:

Headaches on one side of the head, hypoglycemia, tiredness, feeling ten years older than I really am, hormone imbalances, and weight gain.

I am presently cleansing for yeast and doing the water cure.

I would love to hear from others who have/had this I rarely met any.

R
Blessed with a great family!
Mom to four and wife to a man I can really look up to! (5'1 vs 6'6).

Offline ruhamah

  • Adept
  • Posts: 96
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #1 on: March 19, 2008, 01:40:40 PM »
bump
Blessed with a great family!
Mom to four and wife to a man I can really look up to! (5'1 vs 6'6).

Offline ruhamah

  • Adept
  • Posts: 96
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #2 on: March 20, 2008, 03:36:05 AM »
I guess this is really rare since I am the only one here at WTM that had it. ???
Blessed with a great family!
Mom to four and wife to a man I can really look up to! (5'1 vs 6'6).

Offline mykidsmom

  • Guru
  • Posts: 2087
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #3 on: March 20, 2008, 08:35:24 AM »
I have looked this one up and could not find a thread on it so here goes.

Pit macro aden. is simple a fancy way of saying a large tumor on you pituitary gland.

I was wondering if any of the other ladies on WTM have or had this...?

It is rare.

I had mine discovered when I was 25, very very young to find one, and had it removed but still have alot of complications because of it.

I was wondering if anyone else has one or has had their's removed and what it was like for you.

My tumor was not a nice one it was growing into the pit. gland so I had to have part of the gland itself removed with the tumor. Now when I have MRI's they always show a much smaller pit gland.

Problems since surgery:

Headaches on one side of the head, hypoglycemia, tiredness, feeling ten years older than I really am, hormone imbalances, and weight gain.

I am presently cleansing for yeast and doing the water cure.

I would love to hear from others who have/had this I rarely met any.

R

I was actually tested for this a number of years ago.  The guy swore he saw an adenoma.  I know the side effects are very difficult to deal with.  What I ended up finding out is I am borderline Addison's instead.  I take Isocort instead of cortef.  I had the ACTH (sp?) test and that thing is AWFUL!  I feel for you.  This type of adenoma is related to Cushings Disease.  Were you diagnosed with Cushings?  Are you taking Cortef or another cortisol hormone?

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline healthyinOhio

  • Guru
  • Posts: 4024
  • Happily Married for 12 years and proud mama of 2.
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #4 on: March 20, 2008, 08:41:01 AM »
An older cousin of mine had this same tumor.  It caused certain facial features and her hands to enlarge.  She had it removed with no problems. The only thing that she has now is high blood pressure. Not sure if that is related. I will ask her the next time I see her if she recalls any side effects. HTH.

Offline ruhamah

  • Adept
  • Posts: 96
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #5 on: March 20, 2008, 01:39:04 PM »
Patti what's Cushings disease? I have never heard of it........

HIO I have very low blood pressure, very low! and small hands and face ;D ;D

R
Blessed with a great family!
Mom to four and wife to a man I can really look up to! (5'1 vs 6'6).

Offline just jane

  • Adept
  • Posts: 110
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #6 on: March 21, 2008, 05:20:02 AM »
My bro-in-law had a tumor on his pituitary gland.  He is very tall and has very big hands and feet which kept growing after he was a teenager.    The funny thing is he never got the tumor removed because from what I recall, it went inactive!   I guess that was a miracle!

Offline mykidsmom

  • Guru
  • Posts: 2087
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #7 on: March 21, 2008, 12:47:13 PM »
Patti what's Cushings disease? I have never heard of it........

HIO I have very low blood pressure, very low! and small hands and face ;D ;D

R

Cushings is caused either by an adenoma on the pituitary gland or the adrenal gland(s).  You can read about it here http://cushings.homestead.com/ .  We thought I had cushings after my last baby because I gained 40lbs in about a month.  My feet grew 1 1/2 sizes.  It was awful.  They have what's called intermittent cushings which is what justjane's BIL would have.  It means that sometimes the tumor is kicking out hormones and screwing up the body and sometimes it isn't.  Thankfully, we discovered that mine was severely deficient hormones and as soon as I started progesterone cream I literally dropped 40lbs in 30 days!   :o 

Pituitary issues are difficult to deal with.  Anyone with adrenal insufficiency also likely has a low functioning pituitary.  Nourishing it naturally is the best thing one can do.  I wonder if using natural sources to balance your hormones would help with some of the side effects?  Have you had a saliva test done?  www.salivatest.com .  Would be worth it to see how low functioning certain hormones are so you can treat it. 

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline likemanywaters

  • Adept
  • Posts: 506
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #8 on: March 21, 2008, 03:15:20 PM »
A friends child (14) just had a large benign tumor removed from near the pituitary. She is still just recovering from the surgery, so as far as long term effects ???. It was pressing on her optic nerve causing sudden loss of vision in one eye and hormone imbalances b/c it was pressing on the pit. After removal her vision has greatly improved. She experienced fluctuating sodium/fluid levels and diabetes insipidus for a couple weeks after surgery, but it has settled down some now I think.  So this is part prayer request really. They have just gone through a hard time. I researched and saw that Vitex (Chasteberry) is used for normalizing pituitary function. Mostly it was mentioned in herb books in the section on regulating menstrual flow. So not sure if it would help with a non or partially functioning pit. Has any of you tried it? In general if you have had this, what have you done to nourish and strengthen the endocrine / glandular system? What is the corticol steroid used for? I noticed you mentioned hypoglycemia. Has any of you tried licorice root?

I had read this about Cerebral Salt-Wasting Syndrome: http://www.emedicine.com/PED/topic354.htm
Quote
CSWS usually appears in the first week after brain injury and spontaneously resolves in 2-4 weeks. Death and complication rates for this syndrome are not available. Failure to distinguish CSWS from SIADH as the cause of hyponatremia will lead to improper therapy (ie, fluid restriction), thereby exacerbating intravascular volume depletion and potentially jeopardizing cerebral perfusion.

Also these:
Perioperative Treatment of Pituitary Adenomas:
http://pituitaryadenomas.com/perioperativetreatment.htm

Diabetes insipidus as a complication after pituitary surgery:
Quote
CONCLUSIONS
Postoperative diabetes insipidus is a common, although usually transient, complication of neurosurgical procedures performed in the sellar and suprasellar region. Patients should be monitored closely after surgery for the abrupt onset of hypotonic urine excretion and/or hyperosmolality. Once a diagnosis of diabetes insipidus is confirmed—using established criteria—patients are best treated with single doses of parenteral desmopressin in order to decrease polyuria and minimize the occurrence of hyponatremia due to overtreatment. Recognition of the characteristics associated with the triphasic pattern of postoperative diabetes insipidus is important, so that if this condition occurs, the second phase of inappropriate antidiuresis is appropriately managed to prevent severe or symptomatic hyponatremia. Hyponatremia can also occur owing to overtreatment with desmopressin and hypotonic fluids. Patients in whom more than 80–90% of functional AVP-secreting neurons in the hypothalamus are destroyed develop chronic diabetes insipidus; these patients are best managed with long-term administration of intranasal or oral desmopressin.
http://www.nature.com/ncpendmet/journal/v3/n6/full/ncpendmet0513.html

hyponatremia and hypernatremia:
http://www.postgradmed.com/issues/2000/05_00/fall.htm

Hyponatremia after Transsphenoidal Surgery for Hypothalamo-Pituitary Tumors:
http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=NEN2006083002117

Acute Hyponatremia Related to Intravenous Fluid Administration in Hospitalized Children: An Observational Study:
http://pediatrics.aappublications.org/cgi/content/abstract/113/5/1279?etoc

Most of these are medical journal type articles with a lot of big words to say, "we don't really know what to do about this." At least they don't have the sort of advice I would be looking for. Like nutritional natural treatments and looking for causes and such. But maybe they might be of help to somebody.
« Last Edit: March 21, 2008, 04:20:44 PM by likemanywaters »
And, behold, the glory of the God of Israel came from the way of the east: and his voice was like a noise of many waters: and the earth shined with his glory.

-Ezekiel 43:2

Offline ruhamah

  • Adept
  • Posts: 96
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #9 on: March 23, 2008, 07:10:49 AM »
Sorry I have not gotten back to this for so long.

Thanks for all the helpful info, I was looking into vitex from Beeyoutiful.

Yes, I did have the insipidus really bad for several days after surgery. At one point they were pumping five bags of IV fluid with blood pressure cuffs to make them drip faster into me. Not a fun three days like that.

I have been using progest wild yam cream before I started my yeast cleanse but since yeast loves progesterone, I quit, but may start up again when I know the yeast is under control.

I have heard of the saliva test but have never had it done, thanks for the info, I will keep it in mind. We have friends locally that can do it.

Grateful for all the info.
R
Blessed with a great family!
Mom to four and wife to a man I can really look up to! (5'1 vs 6'6).

Offline mykidsmom

  • Guru
  • Posts: 2087
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #10 on: March 23, 2008, 01:12:19 PM »
Hi Ruhamah,

I just read for the first time the other night about yeast loving progesterone but it really has me wondering...... first, your body naturally produces progesterone in good amuonts about 15 days out of the month.  Since God didn't create mistakes, my thinking is that the more unnatural the progesterone, the more likely the yeast will like it.  I have no evidence for this, it just makes sense to me.  I've been using bio-identical progesterone cream for years and haven't had any trouble with yeast liking it (okay, at least that I know of).  If I touch sugar or anything white, then I have trouble.  I'm a fairly yeasty person and was long before I tried the bio stuff.  Anyway, something to think about.  What type of progesterone were you using?

I wonder about your adrenals with having had the adenoma... do you feel like you have adrenal insufficiency?  If you get a saliva test done they can check your cortisol levels throughout a 24hr period and let you know if your adrenals are lacking.  I'm guessing they are since you've had part of your pit removed.  If you get that checked and you're low, one thing you might consider is Isocort.  It is a natural form of cortisol but definately as effective as cortef without the horrendous side effects.  Food for thought.......

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline ruhamah

  • Adept
  • Posts: 96
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #11 on: March 24, 2008, 02:36:25 AM »
Hi Patti,

I have been using nature's sunshine progest cream with wild yam. What kind do you use and where do you get it? I am fairly limited in choices of places to go, only one hfs in the area, so it probably would have to be over the internet.

No, I have not check my cortisol levels. I definitely need to check into it though. I have friends in the area who can do it for me, they were thinking of going into those type of tests as a side business but I don't know if they ever go into if full or have the equiptment for it, I'll have to ask them.

Thanks for the food for thought! Especially about the progesterone you are taking.

I feel like I have been out there on my own with this years. Most Dr. just tell me you a lucky to be alive and we don't want to mess with your system. (Frustrating)

Thanks for the support!
R

Blessed with a great family!
Mom to four and wife to a man I can really look up to! (5'1 vs 6'6).

Offline Ivy Walker

  • Wide Eyed
  • Posts: 1
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #12 on: April 08, 2010, 06:09:57 PM »
I wish I’d found your post earlier!  I was just diagnosed with prolactinoma (pituary adenoma–also macro, like yours), although I’ve suspected for years that I had this.  Have you found out more?  I’ve found this site really helpful–people here have been dealing with this for years.
http://www.dailystrength.org/c/Prolactinoma/support-group
I’ve found that there doesn’t seem to be a whole lot of information out there.  Right now, I’m really, really, really hoping to find some way to shrink this thing naturally so that I don’t have to be on bromocriptine anymore.  I think it’s making me fuzzy–and I feel numb and sometimes depressed, too.  Seems to me that this must be something that can be controlled naturally. The more I find out, the more it looks like peoples’ daily sufferings come from the medicine and not the tumor, although that’s not to say the tumor should go untreated–that would be dangerous. Americans are far more prone to have this problem than other nationalities, so I think it must be in our food, etc.  If that’s so, why can’t it be controlled by reversing those bad elements?
I don’t understand the difference between a cancerous tumor and a non-cancerous tumor, except that one metastasizes and the other doesn’t.  Do they start the same?  Seems likely to me; so I’m focusing on alternative cancer treatments.  After all, I can’t hurt anything by eating better.  This website has interesting testimonials.  I know no doctor would give them the time of day, and there is some goofy stuff, but I think it’s worth looking into.
http://www.healingcancernaturally.com/brain-cancer-cure-testimonials.html
So, I am having cottage cheese for dinner:)

Offline mykidsmom

  • Guru
  • Posts: 2087
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #13 on: April 08, 2010, 09:47:34 PM »
Ivy Walker,

You might consider drinking essiac tea 3x's daily.  As it is an anticancer tea, it may shrink your tumor.  I also think balancing the hormones as much as possible by avoiding all phytoestrogens, chemicals, etc. that mimic estrogen, etc. 

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline IowaDove

  • Adept
  • Posts: 241
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #14 on: June 12, 2012, 04:53:11 PM »
I know this is an old thread but it caught my eye since I think my dad had this. When he was about 30, he started gaining a ton of weight and couldn't lose it no matter what he tried. Then one morning he woke up blind in one eye. So he went in, they did a scan and found a tumor about the size of a golf ball on his pit. gland. They had to remove the entire gland. His life was forever sadly changed. He was disabled, gained over 600lbs. became addicted to his meds and died an alcoholic at the age of 42. Anyway, my question is are these tumors hereditary? It has always been a fear of mine that I would get a tumor too, especially since I have health issues which include my glands. Right now I'm on adrenal support, but am nursing a baby so I'm not sure whats safe or what I should be doing, or if I'm just completely paranoid and need to relax. Thanks for any info!

Offline mykidsmom

  • Guru
  • Posts: 2087
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #15 on: June 12, 2012, 05:21:53 PM »
Hi Colorado Dove,

Years ago I was tested for this very thing.  I am very grateful I didn't have it!  Did your dad technically have Cushings?   While I did not have the tumor they suspected, I do have an empty sella which led to empty sella syndrome in my 30's.  I am now 42 and recently started treating my pituitary issues with a homeopathic remedy.  In just a few days I can already feel my adrenals functioning so much better!  While the tumor itself is not technically hereditary, we can inherit weaknesses in our bodies.   You can help to avoid those weaknesses presenting themselves by being very proactive in your health.   Because I have seen homeopathy do such great things for our family, it is a great way to go in terms of helping to heal genetic tendencies.  If you go another route I would say use lots of herbs that are gland supporting and keep yourself healthy.  I think treating your glandular weakness tendency is very wise and prudent and will go a long way towards prevention.   But technically speaking, this type of tumor is not "hereditary" by the terms true definition.

patti
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline IowaDove

  • Adept
  • Posts: 241
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #16 on: June 14, 2012, 10:16:00 AM »
My mom said that when she researched Cushings, it sounded exactly like what my dad was dealing with, but the bloodwork stated negative for Cushings. They never found the cause of the tumor.
Thank you for the encouragement. I will be looking into the homepathic route. Is there a way to find a Homeopathist (is that what they're called?) in your area? Like a website? Or would you just google it? Are there specific things I should be looking for in someone practicing Homeopathics?

Offline mykidsmom

  • Guru
  • Posts: 2087
Re: pituitary macro adenoma ... anyone else had'have one?
« Reply #17 on: June 17, 2012, 03:37:08 AM »
My mom said that when she researched Cushings, it sounded exactly like what my dad was dealing with, but the bloodwork stated negative for Cushings. They never found the cause of the tumor.
Thank you for the encouragement. I will be looking into the homepathic route. Is there a way to find a Homeopathist (is that what they're called?) in your area? Like a website? Or would you just google it? Are there specific things I should be looking for in someone practicing Homeopathics?

Sorry it took so long for me to get back to you.  Colorado has LOTS of classical homeopaths!  Here are links to ones that appear to do constitutional treatment (which is what you want).  I would also recommend speaking to them about your husband's question regarding getting the hep. B vaccine.  They may have an alternative to protect him or they may be able to treat him immediately after the vaccine to prevent extensive damage from it. 

I found some excellent ones in CO!!

 http://www.homeopathy-cures.com/

http://www.intrinsicvitality.com/index.htm

http://homeopathycuresco.wordpress.com/

http://www.healthwithhomeopathy.com/index.html


From a long list in CO these are some of the ones I found that practice actual classical homeopathy.  I am STUNNED at the number of classical homeopaths in CO.  I am assuming it is because there is an h-pathic college there.   There are LOTS of people that call themselves homeopaths.  Few that are stunningly good.  We use an out of state one b/c the ones available where we live are not that great.  Like a good doctor, it can be hard to find a good homeopath.  These look good though and will treat you to the core.  And like I said, they may have some good suggestions regarding your husband. 

patti



For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.