can you get pregnant when you have a pituitary tumor

There are many different types of pituitary tumor, with different outcomes. Do you know what you have?

i have a prolactinoma tumor.

Your body already thinks it is pregnant with high levels. If your prolactinoma is being controlled with medications, and your levels go back to normal, then provided you do not have any other hormonal issue, you may be able to. So, it is possible if it is treated.

Yes my prolactinoma is being controlled by meds. Well something like that, my prolatin level goes up and down. My other hormone levels are fine.

Im on bromocriptine. I've been on it for almost two years. However it makes me sick so my doctor is switching me to dostinex.

I just had a mri done last week and the tumor hasnt grown or got smaller. So i guess im with that glass half full half empty saying.

Im just amazed that i have been on this medicine for 2 yrs, and it hasnt got any smaller. Its 7mm. Is dat consider big, small, or normal idk. My doc. Is considering surgery because my vision has slightly gotten worst. But idk bout that. Im just frustrated. I would appreciate responses from ppl who have had the surgery.

Im happy i find this site cause my family try 2 b supportive but they know even least then i do. Its good to talk 2 ppl who are dealing with the same issue i am. ...............Thanks

I had both a prolactinoma and cushing's disease.
Make sure that you research your surgeon carefully and the one you choose is very experienced (does more than 50 a year, done more than 500 already). There are different techniques for surgery so learn what they are and who does them and pros and cons of the techniques, outcomes, surgical recoveries etc. Do not fear travel if it means going to a better surgeon - this should be a one shot deal and espeically if it is effecting your eyes, you want someone really good. Mess ups can be bad or require more surgeries - although some tumors do just grow back (some cushing's tumors do that, not all do that). So ask if they go through the nose or mouth, if they use stents, if you have to go into the ICU, recovery times, in case of leaks, if you like the doctor, the hospital, the staff, the attention etc.
And after surgery, TSH usually will be suppressed and sometimes, growth hormone can be effected. Sometimes diabetes insipidis occurs temporarily or very rarely, permantly. Hormone damage is reduced by using a really great surgeon - hence why you really really want to hunt around.

Thanks for the tips. I have a few question if you dont mind answering them. First off what kind of surgery did you have? How long did it take u 2 recover? Has your tumors grown back? Do you still take medicine to prevent your tumors from growing back? Thats something i fear that i will have to take medicine the rest of my life. i read somewhere that even after the surgery some ppl still have 2 take medicine to prevent it from growing back. However their are others that dont. So i guess it depends on the person.

At first i didnt think bout the fact i have a tumor. Just pushed it out my mind. Cause the worst thing that was happening was that i wasnt having my period. But when it did come it would last almost a month. That wasnt fun at all. But over the pass two years it has become hard 2 ignore the fact i have one. Some of my sypthoms have gotten worst and some better. Some days im great and others im not. Sometimes i get really withdrawn from family and friends. To be honest sometimes i try to push them out of my life. During that time i feel alone and misunderstood and unappreicated so them being n my life is useless to me. then other times i need their love and their reassurance that everything is going to be ok. Did you ever get that way? I have become so emotional it doesnt make sense. the slightest thing hurts my feelings, or make me mad. i dont mean that normal mad i mean ova da top cut a person down mad.

I had transpheniodal surgery done entirely via endoscopic through the nose. I only know of two surgeons that do it that way - or at least, at the time I had it done a few years ago, was fully endoscopic.

My prolactinoma was removed completely and did not re-occur. The Cushing's tumor did - however that was because it was a type that was a hyperplasia - a slime of cells - difficult for any surgeon to remove as even one single cell left behind meant it would return. The prolactin one was an adenoma - a developed nodule and could be removed entirely. So, depending on your surgeon, the nature of your nodule, its location - is how it can be removed and your chances of success.

Surgical recovery was about a month - usually stuff, no lifting, straining, etc. Hormonal recovery can vary. I would dare to hope that for prolactin, once your levels went down, it would be pretty soon, but someone who has only had that surgery has to tell you. Recovery from Cushing's, sadly, is not fun, and takes a lot of time.

I can totally relate to the denial. I did that as well for a while and I too, got worse. There is a huge emotional aspect to pituitary tumors that is very hard to deal with. I know that I got very paranoid and other times very depressed. Normal medications do not work either - the underlying problem has to be addressed and you will then, yes, you can go back to normal. I named my tumor Fred, tried to deal with it with humor as best I could and just found support boards with other that have the same issue. Good luck to you. You are not alone.

Thanks for sharing your story with me, I don't feel as crazy as i was feeling before I found this board.

I tryed the humor thing, well my families does and it just makes me mad cause i end up feeling like they don't understand and just down playing the situation. So i didn't bring up the tumor, i just held everything i was feeling and thinking within. That got old to cause i started stuffing from anxiety attacks which isn't fun. So now i try 2 at least talk 2 them and tell them how i'm feeling. Which is hard cause I don't want their pity just a little understanding. Well that is easier said then done cause i get more pity then understanding but their trying so im thankful for that. I definitely understand when u said you was depressed. i get that way myself. Guess I should tell my doctor but i dont want to take any more medicine. I take enough already.

I went to a counselor. Families do not understand. Heck, most counselors do not understand so it may take a while to find one even remotely understanding of endocrine issues. Also, talk to others in the same boat. I have found several others with pit tumors in my area and we even had a lunch. The board prohibits contact but there are others who do not. I found my "tumor twin" (we started talking before surgery as we had many same symptoms - and then had almost identical pathology with both of us with same two types of tumors and now post op, are following a similar path!) in another state and help each other a lot. I travel to see her when I go out of state to see a doctor near her that she found.
Hang in there. I know it is not easy - I had 12 years of heck before I got help and now I am disabled for not getting the help I needed when I needed it. But be persistent, reach out to the right people - walk away if it does not feel right and you really can get better.

Hello.
Going to a counselor has crossed my mind, however I never followed thru with it. Probably will neva go now cause i found this.Speaking of message boards, Do you mind if I asked you what other message boards you go to?

You should find a sympathic ear. It can only help.
Rules here do not permit the posting of other boards or contact information - sorry you will have to find it on your own.

Hi
Hope you dont mind, but i too have this pituitary tumor for just around 18 months now. And going through some horrible experiences, i've only joined this site today just to look into other peoples symptons to see if i'm normal. But looking at yr posts i can see similar effects like depression, anxiety attacks. Im only 28 and feel like im going down hill.

My tumor was first discovered when I was in my late 20's. You need to get to a specialist who will treat you appropriately and with great care. Do you know what type of tumor you have?
Do try to get help and not try to ignore this or go to an endocrinologist that is not a specialist that does mostly diabetes and thyroid... they often do not know what they are doing to your detriment.

Thanks for all of your help and advice. I found another board after some search. Havent found any one in my area. But its more a chatting atmosphere, so i kinda find that sympathic ear. However I think i am going to find a counselor cause over the past two weeks my mood swings, anxiety, and depresson has gotten worst. I havent really slept, and getting in touch with my doctor is almost impossible.

Can your PCP (or an ENT) send you for a sleep study? A lot of people with cortisol issues have interupted sleep, sleep apnea, sleep hypopnea - the diurnal rythym is messed up and if you are like some, the cortisol rises at night and is low during the day - hard to test for that but messes you up good. I was like that. 10 hour urinary free cortisol tests caught it well but not many docs are familiar with the protocol. Sometimes late night saliva tests or even blood draws get it. When I did 24 hour urine tests, my average was ok as I was so low during the day, it cancelled out my high nights!
Good luck to you...

Idk if i have cortisol. I go back to the doctor in May, Ill have to let her know im having trouble sleeping and see what she say. This has been a really bad month for me. My period came on, on the 6th and its still on. It usually stay on longer then seven days but it almost two weeks and its showing no sign of lighting up. Between the head acks, cramps, and mood swings i dont want to be bothered with no one. I go to work and come home. What a life. This got to get better.

Cortisol swings will do that - it effects your mood, metabolism and makes you nuts... hang in there.

Im trying to hang in there but its hard sometimes. Taking it one day at a time. How have you been? i realized today I always talk bout myself and never ask about you.

Have you lost any friends? Cause I'm losing my best friend.

Very few understand this unless they are going through this themselves. Most of my friends are now fellow pit people (LOL) and my husband gets a bit tired of the tumor talk. I have a few of my friends but they don't understand. If I am happy they think I am a-ok. Like doctors, they somehow think my personality is my health! Hang in there - talk to them about it and if they are true friends - they will hang in.

Im trying to hang in there, gets a lil hard at times. its like a no win situation because i try 2 myself when im feeling really moody but they dont understand they think im acting funny. that can be further from the truth i try to advoid the conflict. i know what you mean most of my friends now have a tumor too. its weirod cause i feel closer to them, then my friends i've know most of my life.

I went to the eye doctor yesterday and all my test came back good. that was a big relief.

It is hard, but once you start learning, getting over the shock so to speak, and get some firm friends - it is an up and down type of thing. You get hopeful about doctors, down after they tick you off by offering you anti-depressants, hopeful about tests, down after they come back weird...
Glad to hear your eye tests are normal!

I agree it is a up and down thing. Its getting better cuz i've found ppl who understand how i feel and what im going thru. thanks for all ur help.

I had others help me, to repay them, I help others. Now you can do the same for others!

I have the same thing, and have heard of a lot of people who have gotten pregnant that have had high prolactin levels. I used to be on Bromocriptine, and now am on Cabergaline. My endo said it works a lot faster and it's nice cause she only has me taking it twice a week instead of everyday. I also had a lot of side effects on the brom. so I was glad to get off of that. It might be worth a shot to ask about that? I would definatly push your doctor to change to something else if the brom. isn't working.

Yea i am going to ask her when i go back next month about switching my meds. I hate being on bromo.

Hi this is a really interesting post. I'm in my twenties and was diagnosed as having a pituitary tumor a few weeks ago, and its all been rather hectic since! I've told some of my close friends, but i think the way i explain it, it sounds like its nothing, and they just seem to think i have something like a flu, that will pass with medication, mainly because the C word isn't involved. I've been having tests for months, but only told my parents last week who are pretty worried now. Unfortunately, despite me asking them not to tell anyone, they have told all my grandparents, aunts and uncles, who have in turn spread it to their churches etc. so i basically feel my parents have ruined our relationship, and i cannot trust them. I now talk to my friends about it, i guess its not the same.

Anyway, what i wanted to ask was the original question. I know i may sound really horrible asking this, but can you get pregnant when you have a pituitry tumor, before you have had any medication? I was always used to having the pill and cndms as protection, and i tend to worry a lot. My boyfriend and i were messing around, then used protection during intercourse. I only got put on my medication last week, and now im worrying i could have got pregnant from that time we had sex. I had to give up the pill several months ago, and haven't actually had a period since. I'm just worried i guess because we have just started having sex, and i haven't been used to all this stuff since!

I don't know what the C word is (must be tired tonight but I cannot figure it out).

Depends on the type of pituitary tumor you have that really dictates the treatment - whether it is meds or surgery. Pregnancy depends on the type and your body... some people can and some cannot, tumor or no tumor.

I do hope that the doctor ran complete tests on your pituitary so that it is clear what type of tumor you have and any other hormonal issues can be identified. Were all your hormones checked - thryoid, adrenal, male/female and pituitary?

Hello Eva1,
I haven't posted in a while, anyways, I had my three month check up Monday, to get test results, you know the usually stuff. Good news bad news situation. the norm for me. Visual test came back fine. Prolactin has gone back up. Other hormones are fine though. MRI idk. My doc gave me miss leading information well as least dats how it came off 2 me. First she told me dat the MRI showed that da tumor hasnt changed from da 7mm from 2 yrs ago. Then she told me since they used a openned MRI that the images wasn't as clear as the closed one, and they couldn't see the tumor clearly. So that left me feeling like r u just guessing the tumor hasnt changed r do u really know. I did get a copy of the Mri report but its greek 2 me.

So she has finally taken me off bromocriptine and switch me to dostiex(twice a wk). I went and priced it, and lets just say the cheatest i found was $188 for a months supply. Would i do better getting them online?

OH WHILE I WAS AT THE DR. OFFICE WE TALKED the possiblity of having the surgery. I did some research online. But I don't remember reading the surgery could cause your pituitary gland to stop working and you would have 2 b on hormone thearpy and won't be able to have kids. After she told me that i know i dont want to have the surgery. Yes she told me that happens in a rare cases but with me only being 23 the possiblity of not having kids dont seem to appealing. Guess it wont make a difference cause i cant have them now. but i feel like i still have a little hope but if i have the surgery and that does happen my slim chance is gone.
I am so tired of ppl telling me oh well you can adopt r my fav is eva1 is not meant 2 have kids. Easy for them to say they have kids and/or can still have them.

Yes, there is a possiblity of losing fertility - but it is not the biggest chance.
Usually the hormone lost first are TSH and GH. She is not informing your correctly.

Surgery for a prolactinoma is usually last resort. It is not responding to medications and/or the medications are causing side effects that just cannot be overcome or the tumor just keeps growing.

If you do have surgery, in order to minimize damage, you need to find a very very experienced surgeon - one who has done 500 minimum pituitary surgeries, preferably more than 1000. Ask about the technique (lip, nose), use of stents or not, use of fat grafts or not, use of packing or not, ICU afterwards or not, fully endoscopic or not, the experience with endoscopic (a lot of docs are just getting into now and are not as experienced), etc. There is a lot to think about - this is not a surgery to just go to Dr. jo blow around the corner but to think about carefully.

I have known lots and lots of people to have the surgery - and those that asked a lot of questions and knew a lot had better outcomes... a lady that I know of got a *free* surgery for her son and the neurosurgeon was inexperienced and the doc removed the entire pituitary! That was a catastrophic surgery and pretty much ruined her son's young life rendering him panhypopit at 12 for no good reason but for free. I gave her this same advice - ask questions - get experience but she went for cost and well, it is costing her plenty now. Still, anatomy and disease still can throw surprises. My tumor grew back and there was no surgeon that could prevent that as it was a slime of hyperplasia - but I know most of my pituitary function is intact so I am still happy with my surgeon.

You can still retain fertility - for the most part - if you are careful and take the right steps - and have surgery. There may be other issues but if that is the only issue... I would, if I were you, find a neuro-endocrinologist.

The reason surgery came up as a option is because I had really bad side effcts with bromo. I'm about to start dostinex. And if and only if I can't torolerate that then i will have the surgery.

I was reading somewhere online that dostinex can cause heart failure or even death in woman. Have you heard or read anything about that?

I personally have not heard that but I have not researched it - I took bromo and felt like I was run over by a truck so I am with you there!
I know people that have switched though and liked dostinex much better though .

Hope you can find generic or a cheaper source... man, it is expensive!