Discussions By Condition: Endocrine conditions

pitutary tumor

Posted In: Endocrine conditions 19 Replies
  • Posted By: Anonymous
  • October 20, 2006
  • 03:15 PM

I recently underwent surgery for a pitutary tumor, and I was put on the drug predisone, I am haveing some very serious side effects from it can anyone help me.

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19 Replies:

  • contact Piturity Network Assocaition, they may be able to help as they deal with thousands of people annually.Agape,Sam Davies
    Anonymous 42789 Replies
    • November 9, 2006
    • 10:48 AM
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  • What type of a tumor did you have? What type of symptoms are you having? I had a pituitary tumor 4 years ago, Cushing's Disease and was put on hydrocortisone (similar to prednisone) for a year until my pituitary started to function again. My dosages were split into 3 doses: 10 mg at 8am, 10 mg at noon and 5 mg at 4pm. I remember when it was time for my dose I would get really tired and then after I took it in about 1/2 hour I would feel better. I really didn't feel that great until I was off the hyrocortisone. Laurie:)
    laurie hahnlen 19 Replies
    • November 16, 2006
    • 01:00 AM
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  • While my pituitary gland was non-functioning, I took cortisol (not prednisone) daily. I did better on several small doses throughout the day and in total took a less in total. I found these sites very helpful and the info was in line with what I experienced after my diagnosis (which took a long time and LOT of doctorshttp://www.medsafe.govt.nz/profs/Datasheet/a/Apoprednisonetab.htmhttp://en.wikipedia.org/wiki/Prednisone Good luck. Keep trying. You know if something is wrong with you. Don't let a doctor talk you out of it.
    oklahomagal 14 Replies
    • February 16, 2007
    • 00:15 AM
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  • Are you still taking the cortisol???
    Anonymous 42789 Replies
    • February 17, 2007
    • 04:13 PM
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  • No I am no longer taking the cortisol. My Cushing's and subsequent adrenal insuffienciency were caused by my body storing steroids in my body tissues for an abnormal length of time. Once my body finally released as the stored cortisol, my pituitary and adrenal glands all recovered. I had gall bladder surgery this week with no complications, though my blood coritisol was monitored.:)
    oklahomagal 14 Replies
    • February 20, 2007
    • 01:08 AM
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  • I have adrenal insuf caused by a benign brain tumor thats inoperable. I wish I could get off these steroids. I'd do anything- to get better. I now have Cushings from cortef. I've had this for two years now. Mine is in the back of the brain- if it was up front then they probably would of just taken it out. I've had three adrenal crisis since last Christmas. No fun.
    Anonymous 42789 Replies
    • February 20, 2007
    • 03:11 PM
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  • who said the brain ttumor at the back of your brain was inoperable? How many second opinions did you get? So few doctors deal with pituitary and adrenal disorders and I think you might get some hope with other doctors. I went to the Mayo Clinic in Minnesota out of desperation. But I found that my insurance covered it just like any other out-of-network doctor and so I met my maximum out-of-pocket very quickly. If you have the means, make yourself and appointment with Dr. Dana Erickson at the Mayo. She's amazing. You do not have to have a doctors referral to see a doctor at the Mayo. While you take cortef the chances of Cushings is always there. Can you manage on a smaller dose of cortisol? I was taking about 20 mg total a day. I managed best with several small doses throughout the day, as small as 2.5mg at a time. Maybe that would help?
    oklahomagal 14 Replies
    • February 20, 2007
    • 03:26 PM
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  • I've thought abought Mayo's before, but I figured if I already had two doctors tell me outside the steroids there's nothing they can do, then what hope does Mayo's have for me????? I have insurance to cover it, but I would need to see a nuerologist and the endocrinologist. That's alot. And would if I went up there and they couldn't do anything for me. I go to Loyola in Chicago and they told me it's not the kind thats treated with radiation, yet it's too deep to mess with. I have two kids and the thought of brain surgery just freaks me out. I really don't want anyone performing brain surgery. I've seen 2 nuerosurgeons and they both told me it wasn't worth it and as long as it doesn't grow it's ok. I think it was 2mm, or cm I don't have the reports with me here. I know it was about an inch thick and has shrunk. I'm supposed to have that bolus testing done in April and that will give more information on how the pituitary is working. I'm taking herbal supplements to keep my cortisol levels normal, along with this I have been able to taper down off the steroids. But, this is a slow process. The withdrawls from it are horrible. My energy is just drained. I'm supposed to be doing 20mg of cortef in the am/ and 10 mg of cortef in the pm. I've gotten myself down to 5mg in the am/ and half of a 5mg pill in the pm. I couldn't do this with out the herbs. I keep thinking I'm gonna get better and things will go back to normal, but it just seems to get worse with the Cushings. I've got a mammogram scheduled today and tommorrow I get my eyes checked for glaucoma. I don't think anythings wrong, but they like sending me to all sorts of doc's you know?? Thanks for your reply. sorry for the spelling.
    Anonymous 42789 Replies
    • February 20, 2007
    • 04:23 PM
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  • I have Cushing's, and I am being seen at Mayo Clinic in Rochester. There are VERY good Neurosurgeons there. I have been to MANY doctors that said they could do nothing for me, and finally I have an answer. If your insurance covers it, it would be worth the trip. They also schedule things wonderfully, and you would have both appointments in the same day. Also, look up www.drjho.com. He can treat many tumors that are "inoperable''. I wish you the best of luck, and keep us posted.
    girlfromipanema 12 Replies
    • February 21, 2007
    • 07:26 AM
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  • How did you get Cushings??? Was it from steroids?? I have Cushings also, but it's from the steroids to keep my cortisol levels normal. I'm now taking herbal supplements and trying to wean off the steroids to see if I can just do the herbs. But, am labeled severe adrenal insuff. I've gotten down to 5mg in the am, and dropped down to half of a 5mg pill in the pm. They have me on hydrochlorothyzade to get rid off the water retention and these make me pucky feeling. Sorry for the spelling. I'm not a medical expert. i'm going to keep these things in mind thanks for the reply. Do you watch your blood sugars with the Cushings??? How about your blood pressure. I have those red lines on my hips associated with Cushings, they just appeared. I was walking 3 miles a day and I gained 20 more pounds. I have never been this big before. It's frustrating. I have always been a size 5, and do you have the facial hair- How is your energy level.??
    Anonymous 42789 Replies
    • February 21, 2007
    • 02:54 PM
    • 0
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  • what symptoms did you first have that made them suspect the tumor? I have appt today but I am thinking its my thyroid medications ..or hope so. Some searches on here has pointed to pituitary problems though so was wondering about yours.Hope you do ok.
    agypsygrl 79 Replies
    • February 21, 2007
    • 03:45 PM
    • 0
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  • Hi all i have been on high dose steroids (prednisilone) on more than off for 20 years and agree with you that the side effects are atrocious, I find the mood swings and sleeplessness the most difficult to deal with. It will make it easier to cope with if you explain to freinds and family how you feel on this drug so that they know its not the real you, i forewarn my partner and my children and they can make allowances for my sudden outbursts.(or avoid me like the plague) As for the other effects you can take other drugs to stop reflux and stomach probs you may need a drug to prevent bone thinning too as i have recently broken my arm which they think is due to bone thinning (osteoporosis) the facial puffiness and hair growth and weight gain ive just learnt to live with. Just try to concentrate on the fact that the steroids you have been given are for a reason and need to look at the benefits although on a bad day i know this is hard. I hope this has been of some help as iknow how alone you can feel through all this:) Diane
    Diane Sistern 29 Replies
    • February 21, 2007
    • 04:12 PM
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  • I know you've been to lots of doctors; me too. It's the waiting for an appointment, waiting to schedule the test, waiting for the results, waiting, waiting, waiting.... that will zap your strength and your willpower. Not to put too fine a point on it, in some ways the Mayo Clinic is like an assembly line, but in a good way. Here's how my first visit went: 7:00am Monday One hour appointment with endocrinologist (Dana Erickson). She scheduled many tests on-line at her desk as we spoke. Also noted other specialists she wanted me to see. She dictated her notes while I was in the office, so I knew what her thoughts really were. Nothing was hidden or left unsaid. 8:30am Monday Received 'itinerary' for the week, which included all appointments with other doctors and scheduled times for all the tests the 7am doctor ordered. 8:30am Monday Went downstairs for tests galore. Maxiumum wait was 10 minutes. Blood work, chest xray, CT scan of brain and abdomen, others I can't remember without looking at my paperwork. 11:30am Monday Lunch at the very nice and inexpensive Mayo cafeteria. Did some window shopping in the mall there in the underground tunnel system. 1:00pm Monday One hour appointment with immunologist. By this time, only a few hours after my very first visit, the notes from my 7am appointment were transcribed and in my computerized patient file for all subsequent doctors to read. Also, 90% of blood results were available, plus results of chest xray, CT scan, whatever, that I TOOK ONLY A FEW HOURS EARLIER. No waiting. The immunologist saw a few more things, ordered more tests and scheduled more doctor appointment as he saw fit. 2:15pm Monday Received a revised 'itineray' with all new tests, appointments. 3:30pm Monday Appointment with gasto doctor. Same routine. This went on all week. It's tiring, but everyone is very nice and sympathetic. By Friday I knew what I had and what I had to do, and I didn't have any lingering doubts to keep me awake and worry me to death. IF YOU CAN GET TO THE MAYO, DO IT.
    oklahomagal 14 Replies
    • February 22, 2007
    • 07:29 PM
    • 0
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  • I hate having this ****ing tumor.Sometimes I fill like theres no reason for liveing.This tumor made me gain weight and it is very hard to lose wieght at all.I knew somethig was wrong because I started to gain wieght and barley ate anything.**** up my eye sight and had a nigga growing tittys like a women.Man this **** is crazy.Before I got this ***k **s tumor,I was skinny with a six pack.Girls was all over,**** that was the days.**** it if you want to holla at me about this ***k **s pitutary tumor call your boy at (562)394-60
    Anonymous 42789 Replies Flag this Response
  • Hello!My name is Adrienn. I'm 26 years old. I live in Europe: Hungary, Budapest. I have got a milk and heat-wave everyday a lot of years. I go to a lot of doctors. They are always says: My milk is ok.But is not true...........One day one endocrinologist say that I have got a pituitary tumor, macroadenoma. ( 8 mm ) The tumor was generate prolactin and growth hormone.I have got a surgery in a last year. My surgery was in National Institute of Neurosurgery. Doctor Sandor Czirjak ( MD, Ph.D., D.sc. ) help me.( http://www.youtube.com/watch?v=8q-hOo8yigA )Now I'm very happy. I don't have a milk and heat-wave.I hope everybody who have got a pituitary tumors will be healthy. Good luck!Regards, AdriennHungarian Pituitary Tumors Portal: http://www.hipofizis.huSandor Czirjak Md, website: http://www.agydaganat.info
    Adrienn 1 Replies Flag this Response
  • Alfalfa is the herb for the pitutary. www.nutrovita.com/store/alalfa.htm (something like that) has a wonderful article on this herb. You'll have to take it for a while though.The way to get drugs out of the system is Goldenseal, yogurt, apple cider vinegar, even milk, grape and grate fruit juices etc. Astagulas, and even chlorella. (introduce one at a time and not all at once i.e.)Stick with it but herbs and medicine (chemicals) don't mix wellI hope this helps
    Anonymous 42789 Replies Flag this Response
  • I've thought abought Mayo's before, but I figured if I already had two doctors tell me outside the steroids there's nothing they can do, then what hope does Mayo's have for me????? .Consider Johns Hopkins -- they take most insurance and have a program that coordinates lodging etc for patients coming from beyond the local area. Also, their Brain tumor research is very advanced. Hopkins is always my first thought when it's cancer.
    Anonymous 42789 Replies Flag this Response
  • Hi , im hoping you all are able to assist me i was diagnosed with a 6mm prolactin producing microadenoma in2005 after 15 Er trips where i was told to see psyche, i took bromrcryptime that shrunk it briefly now it is 11mm and i am going nuts, my memory is gone,fatigue is rampid and im having seizures,sinus pain,headaches irritability etc. all of which the neuro says are not due to this. i also have a large lesion in my nasopharnyx region . I dont know what to do , I just want my life back! Am i going crazy? howdo you deal? any suggestions would be sooo appreciated.
    rosings2 1 Replies
    • February 16, 2009
    • 08:02 PM
    • 0
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  • This is my second dealing with a pit tumor. a macroadenoma to be exact. I had the first removed in 2006 transponodial only for it to grow back a year later. I have dealt with the same symptoms of constant pain, headaches, vision loss, vomiting, which neuros are very quick to say are not caused by the adenoma but are quick to say are unsure that they may or may not be correlated. I too am on cortisol, because I am extremely adrenal insufficient, but was never told that a side effect of the cortisol was that it could indeed make you go into Cushings. How absolutely devastating. I have recently found out that my thyroid is not underactive, which just is mind boggling to me that they are doing really nothing at the moment... I have had multiple problems on the cortef, which they have altered because of my extreme sensitivity to most steroids and allergerys to others. The more hormones that I have issues with with this tumor the more replacements I am going to have to go on.. IE Steriods... why are they just not taking it out again??? Especially with my visual fields being so off. I am only 26 and I have really no life anymore. I dont know how much more I can plead to the doctors. Literally I have had so much blood work, and been in the hospital so much that I know have no working viens in my left arm and a right arm that is being looked at this coming week for a blood clot. I sound like I have the limbs of a 90 year old lady. Sometimes I feel like these tumors are just not taken as seriously as they should be. I was up once at Sloan Kettering in New York. They were absolutely amazing. If I had the means to get back there I would be in a heart beat and I tell anyone in the area or financial means to get themselves to there or I guess the Mayo clinic that everyone else is speaking so high of. Sloan has a clinic called the Pituitary center. So the doctor works primarily with you and an endocrine team and whomever else she feels she needs to gather for your various needs. Look into it. Good luck and God Bless Everyone.Happy Holidays to everyone that Celebrates.
    Anonymous 42789 Replies
    • November 10, 2009
    • 07:01 AM
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