Pituitary Tumor - Prolactin

[ddbillsfan]

I am going to go into as much detail as I can to provide you with the information that is necessary.

- Male
- 19
- Obesity
- OCD
- Extreme Anxiety
- more

My Medications:
- Benztropine
- Zoloft
- Invega
- Fluvoxamine
- Buspar

My Symptoms:
- Foggy Headed
- 'Poor' Memory
- Enlarged Breasts
- Delayed Puberty
- Does not grow much hair
- 2 Small Sized Lumps on right leg (which can only be noticable if I extend my leg)
- Vision Problems

So last year, around this time (literally) - I was at my aunts house. That night I went to bed - I layed down for about 10 minutes, then opened my eyes, and it seemed as if my eyes were jumping to where I wanted to look. Still today, I have this problem (it hasn't worsened, but just stayed the same).

I worried myself so much the next couple weeks after that. I was scared to go to sleep - I thought I had a brain tumor - I thought I had all brain tumor sypmtoms.  I eventually went to the hospital because I got foggy headed (which I still am experiencing today). I had a CT Scan done, and the doc said everything was normal. I stayed in the inpatient mental health unit for 5 days. While I was there, I had a few blood tests, and I also had a MRI, which the doctor said everything was fine.  That is when the doctor switched around my medicines to my current list (up top).

After I got out, I just went by everyday, foggy headed. (However, when I got my CT Scan, the doctor said the loopy feeling was caused by severe head colds (which once I do have a head cold, it seems my foggy headed feeling, gets worse).

In September I went to my Psychiatrist, and I told her about my symptoms - she had me get a blood test. I had missed a couple appointments, so this month is when I actually got my results. She said some numbers were abnormal (prolactin, thyroids, testosterone, etc). I went to the doctor Monday, and she gave me another blood test. This morning I got the results, and she said my thyroid levels were fine. She said that my prolactin was abnormal (which could be causing my breast issues), and she prescribed me a pill to take tonight, then in the morning go get my blood drawn. She thinks there could be a problem with my Pituitary Gland Hormones(?). She said if the results are abnormal, that is when I will get an MRI (1 year ago had a CT Scan, and MRI (like stated above) and results were fine). She said if it is something wrong with my Pituitary Gland, she will prescribe me medicine to fix it.  She told me she doesn't think its a tumor, or anything harmful.

I am very worried, and am afraid I have a tumor. I have went a year like this, and still haven't found out what is wrong. I'm worried that if it does turn out to be a Pituitary Tumor, I will lose my life, or something horrible will happen.

The doctor said I didn't have any symptoms of the tumor, but why else would she want me to get my blood taken and have a MRI (if the blood test was abnormal)? I was talking to her on the phone, and told her I was scared it could be a tumor, or a life threatening situation, and she said it's only my hormones from my Pituitary Gland.

I would like some honest opinions on what you think is going on - I'm very worried that it could be life threatening.

Thank you for your time

[leopepita]

I would not automatically jump to the conclusion that it is a pituitary tumor.  Breast development in men is actually more common than you realize, they call it Gynecomastia.  I did notice that you are taking Invega.  From what I know of this drug, one risk includes Hyperprolactinemia, (which is elevated prolactin levels) causing men to develop breasts and late puberty in young males.  I’m no doctor but I do believe I would ask my endocrinologist if the medicine could be causing the elevated prolactin and vision problems.  I totally sympathize with you on the elevated prolactin, I was 17 when I had a Rathke’s Cleft Cyst removed, which was causing hyperprolactinemia.  Let me tell you it definitely wasn’t fun explaining to my group of high school friends that a brain tumor was making me lactate!  But, on the positive side, I had the best rack in the HS :).  Now, I’m a relatively… normal 22 year old chick, I’ve been on Cabergoline which is a dopamine receptor agonist since 2007.  I no longer have an elevated prolactin, (just diabetes insipidus and hypothyroidism.)  Definitely, make sure that your doctor is proactive though because studies have shown that elevated prolactin over a long period of time may have some correlation to causing lupus.  Best of luck to you!

[horselip]

Don't worry!

You sound like you do have hormonal problems but this is treatable. But you want to find why you are having the hormonal problems and have that fixed, if possible.

It may be that many of your symptoms and worry are tied to your hormones being off.

When my journey began I was relieved to actually find out that there was a reason that I felt the way that i did.I was scared too, but not to the point of being paralyzed with fear. I also had many mental health diagnoses pinned onto me. Yet in the end 90%, of it was hormonal.

But start reading up on your hormones. Get the right type of doctor.You can control the doctors that you hire and drive that process somewhat. But it will help if you read up on things a bit so that you know if you know if you have good care or not..

TSH is a hormone made by the pituitary gland. It tells the thyroid gland what to do. If you have low TSH and low thyroid hormones like Free T3 and Free T4 it could be that you are  (low) hypothyroid because of your pituitary gland.

Being worried is not going to benefit you at all. It might make it so that your doctor is scared to tell you the full truth. An MD is human and cave to your OCD and anxiety and give vaguer answers to you in order to try and protect you..

It sounds like they've just figured out that you just been told that you might  have the hormonal problems from the last set of labs. That is good in a way they they are looking down this path.

Horselip

[ddbillsfan]

Well, in September they gave me a blood test, and my thyroids was out of normal range. A few days ago, I got my blood taken again (TSH or something?), and she said my thyroids was fine.

Do you guys think I should worry?

[horselip]

Yes it could be something else.

I wanted to let you know that when i was first diagnosed my prolactin levels were ~200. They were SURE that I had a prolactinoma. I did not respond to the meds and had surgery a few years later. When they analyzed the tumor, after it was removed, it was a Rathke's Cleft Cyst.

So here you have two extremes of the spectrum. In Rumpled's case she had lower prolactin levels and she had a prolactinoma. And then my case where my levels were much higher and it was not a prolactinoma.

With a lower prolactin level like that it can be due to other hormones or meds throwing your levels off. It could be thyroid, psych meds and other things.

This is where the "art" of medicine and a good doctor is needed to look at everything.

Just wondering, have they tested your testosterone levels and other sex hormones like FSH and LH?

Horselip

[rumpled]

At my lab, prolactin levels are abnormal above 30 - so 49 can put you in the pituitary tumor range. Your doctor is sadly thinking that you have to have really high levels to have a pituitary disorder and that is simply untrue - I had one with barely abnormal levels myself. I know my doctors also said I did not have one (but it was confirmed with surgery).

You need to find a competent doctor that knows hormones a bit better. Please get copies of what has been done - and get to a neuro-endo at a pituitary center.

It does seem very scary at the beginning. I know I was very scared myself. A prolactinoma can mess with the emotions very much and so can the Cushing's syndrome. Either one can be treated.

[ddbillsfan]

Thanks for the reply.

I did call my doctor earlier, and asked her what my prolactin level was, and she said it was '49'.  She said she doesn't think it's a tumor, however she thinks whatever the problem is, it's definitely hormones.

Instead of a tumor being wrong with my pituitary gland, could it be something other than a tumor (but still wrong with my pituitary gland (hormone issues I assume).

Thanks for the replies guys, you've helped me a alot. After reading your comments, I do feel a lot better.

[horselip]

Hi there-
I wanted to let you know that if you have a pituitary tumor, they are usually easy to treat. Follow Rumpled's advice and go to a pituitary center at a major hospital.

There are not that many neuro endocrinologists out there in the world, and all of them are notgreat.  Sometimes you to travel to find a good one..

If you are suspected of having a pituitary adenoma, thia type of doctor will order an MRI, get a very detailed background information from you and do more blood tests to try and figure out what you have.

With prolactin secreting adenomas they can usually be treated with medication and you won't have to have surgery. My sis-in law had a small prolactinoma and she was told to take medication. She went on to have three healthy children and her "prolactinoma" no loinger shows up on her annual MRI's.

ACTH secreting adenomas are little harder to treat with meds. The surgery to remove simple pituitary adenomas is very safe in capable hands.

Did you happen to get a copy of your labs tests? I ask because sometimes doctors say you are fine, but then when you read the lab tests yourself they don't look right. Some are out of range others borderline high or borderline low and the doctor has simply minimized what might really be going on..They do this out of ignorance.


Gather yourself and look for a doctor that is a good fit for you. You might tell your current doc that other pituitary patients have reccommeded that you see a neuroendo and ask for help in the referral.

Horselip

[ddbillsfan]

Thanks for the reply.

I did forget to mention - my enlarged breasts, has been with me since about 2008. Over that time they grew bigger and bigger (as well as my weight).

In 2008, I panicked for a couple of weeks, thinking I had a brain tumor. I was making myself believe I had all the symptoms. I went to the ER and the doctor said I had Sinusitis.

I called my doctor back this morning, I told her I was worried about it being a tumor - she said she doesn't think that's what it is - however she did mention Cushings Syndrome. I asked her if I would have to have surgery, and she said she highly doubts it.

If it is a tumor, is it highly treatable? I'm just nervous that I will die.

Thanks again

[rumpled]

Your doctor also *sort of* tested you for Cushing's syndrome as you have many symptoms for that. Unfortunately for you - the doctor did a dexamethasone suppression test which is a pretty unreliable test. BTW - I had Cushing's and a prolactinoma, so I can relate to what you are going through.

In my opinion (as a fellow patient), it does sound very likely that you have a lot of hormonal issues going on and you need to find a competent doctor to help you. First you need to get copies of everything - the MRI report, the MRI on CD, any and all blood work and you need to research well how to test. I think that your doctor waiting to give you an MRI is not a good thing - you need to get a proper pituitary MRI now - but I would also say that you need to get to a pituitary center before you do it so you get a *good* MRI and a better change of a better quality MRI and more competent read. The MRI needs to be dynamic and on a new machine (3T) if possible as smaller lesions can show up with better technique.

The dex test has to be done right - did you take the pill at exactly 11pm and did you get the draw at 8am the next morning and were you fasting? Testing can be botched for test timing, and lab error (been there, done that). So it is very important to be an informed patient. If you have a prolactinoma only - which is likely - that can be treated with medication. Cushing's is more likely surgery (there are some medications under study but not completely used yet) and I have had the surgery - the most important thing is a very experienced surgeon. I have had 12 surgeries - my pituitary was among the easiest!

I would also get to an eye doctor and make sure they know to check you for visual field and for optic nerve issues.