Hi I just joined DS, just posted about my pituitary tumor. I've known about mine for 2 years. Mine affects my vision, and I think it's starting to affect my thyroid. I've lost energy, gained weight, just feel blah. What does yours do?

Hi Sionnn26,

Well over the years mines has:
1. affected my vision
2. affected my cycle, even caused Poly-cystic ovaries
3. Weight gain
4. Migraines
5. Hypoglycemia
6. Seizures
7. Depression
8. Mood swings
9. Arthritis
10. Dental Problems
11. Small heart problems
there are other complications also.

I'm on a good bit of medication
I've hope that I will not have to do surgery and that I will survive this.

You must have that hope to.

My symptoms mirror yours. I often wonder how long I had mine before diagnosis 2 years ago. My monthly cycle stopped completely about 10 years ago when I was 30. I've been putting on weight for the past 4 years. Seizures are new, they started this year. Headaches for at least 15 years, along with hypoglycemia, depression and mood swings. Occasionally my hear skips beats or beats too fast - 3 times in the past 10 years I've had to be taken to the hospital because my heart was in the 2-300 beats per minute, had to be stopped and restarted to slow it. The vision loss triggered the diagnosis. At first they told me it was from MS, they found the tumor on an MRI looking for MS lesions on the brain. No you don't have MS, but you do have a tumor. Thanks.

I'm making an appointment for next month to see a doctor for the first time in 2 years. It will be a general doc, not an endocrinologist. Any advice for questions I should ask, tests I should ask for?

I also wondered how long I had mines before it was discovered. Mines was discovered by accident. For about 5yrs before I used to collapse and be unconscious for long periods; no one ever investigated it.

I also was rushed to the hospital with my heart beating really fast, just mines was 190.
My cycle has never been ok, if I saw it 3x for the year that was plenty. When it did come sometimes I will get months of bleeding.
I used to get bad bad headaches since I was 8yrs.

Well besides an MRI (which they most likely will do over)
Field vision test, Blood test of the hormones the gland produces.

They may also do an ECG, for the seizures.
I will tell you that hypoglycemia causes seizures when it goes too low.

You may be better of under an Endocrinologist.

My biggest fear is the money for treatment. I'm not sure what procedures are covered at what percentage - honestly I can't afford hardly any percent. It seems to me all the test they do, do nothing to help, stop or slow the symptoms. It makes me wonder if the money for the tests is worth it.

I've gone 2 years without any of it, I think at the least I'll ask for the blood tests to check what the hormones are doing. MRI seems pointless if they aren't considering surgery. Field vision test is also senseless since I'm already legally blind.

Maybe I'm just afraid to know how bad it's gotten in the time I've had no insurance. If there's nothing to be done to correct the problem, do I really want to know how bad it is?

Hello Sionnn26,
I know what you mean. I went 13 years without medication....It's only this year they started. I to used to and still do to a point, that all these test are pointless.

Well in my country there is free health care, you get blood test, MRI, almost everything free....but it's a long waiting list for it.

I had found out about my problem privately, and so I my family had to pay for everything. Then one day I collapsed and ended up in the hospital (public) and from then on I was being seen through the public health system.

They however, were only pushing for surgery which both my family and I didn't want. My mom, who is a retired nurse now, told me to try and stay connected to the public health system (since it's free).

You even get some of the medication free also.

I ended up going back to the doctor who discovered it privately to see if he also would recommend surgery. He didn't, He's the best Endo..in the country.

It sometimes feel as if I'm somebodies gene-pig/lab-rat.
I to am scared to do test, because I keep getting more and more bad news....which leads to more and more medication.

I feel more in control of myself when I'm not on medication. I feel sane. However some of the medication have me in a daze and depressed and really tired.

I which I could help you out more...but all I can do is be here for you.

Lots of Love and plenty Hugs
:-)

Glad to know I'm not the only one who wonders what the point is to the tests. It does seem like it's just bad news with no solution. I was on medications when I lost medical coverage - too much, too many side effects. Not having meds for 2 years have given me a clear head, but the symptoms can be hard to take sometimes. Not sure if I want to get back on meds, maybe go slow and ask a lot of questions on why the med is necessary. I think doctors here write too many prescriptions so that you think they are doing something and you shut up and leave. I don't think there is a magic pill to make everything better. But making it more tolerable wouldn't be bad.

I am actually getting ready to have my pituitary tumor removed on the 13th of September. And I am so scared.

I am actually getting ready to have my pituitary tumor removed on the 13th of September. And I am so scared.

I'll keep you in prayer klovin82.
How long have you had it now?
Did they try medication and was it working for you?
Is it that it's not producing the hormones it should, that's why surgery is need or otherwise?
Please stay in touch....I'd like to hear more....I'm praying and hoping they don't have to resort to surgery for mines.
I've an MRI due in October.

I found out about mine on May 31, 2010. I went to the hospital for cardiac symptoms. My heart looked good so they did a CT to rule out an aneurysm and they found the mass. I was then referred to my family physician for an MRI to confirm. Then I was sent to a neuro surgeon on June 21st. After that I was sent to an Endocrinologist for blood work to see the type of tumor. He called me yesterday and said that there was nothing he can do for me and sent me back to the surgeon. I have my pre-op on August 19th and then surgery is scheduled September 13th.

It all happened very fast. All my doctors seem to be in a hurry to take care of it. I haven't known about it all that long. Here is everything I know about it.

I have a 10mm non-functioning macroadenoma
It can't be treated by medication because it is non-functioning
Surgery is the only option
It has apparently been growing for a while related to the size
My symptoms are related to the fact that the tumor is pressing against my gland causing it too release too much of some things and not enough of others.

Here is what I know about the surgery.

It will be microsurgery through the nose.
I will spend 2 days in the ICU then 2 more days on the regular floor.
The endocrinologist will see me in the hospital and they will start me on growth hormone, cortisol and a few others then ween me off what I don't need.
I will be out of work for 2 weeks.
And from what I hear it is supposed to be quite painful for the first couple days.

But I can't wait until I feel like a normal person. I know the surgery is scary and the risks are high but I will be so glad to be rid of it. Here are a list of my symptoms.

Headaches
Infertility
Depression
Mood Swings
Hypoglycemia
POCS
Irregular periods
Insomnia
Acne

I hope this helps you. I know this is a scary thing.

Why are they going so slowly with yours?

Well for some reason in this country they put your appointments far apart. You don't always see the same doctor, it's a team of doctors and whoever is available see you.

I was put on some medication for my seizures and It's not agreeing with me. However, I can't get it changed till I go back to clinic three months later. which is in 3weeks time.

My tumor is actually 1.5cm or 15mm...I seriously don't want to do surgery.

Hi guys, I too like klovin82 was diagnosed in May of 2010. I was and still am scared. I went to the dr after 2 years of a constant headache. My cycle was all screwy and my vision will go blurry or do the tunnel thing. Which pisses me off.. I an very independent and stubborn witch doesn't help. I am looking for a group of friends going through the same thing. To listen and give advice. To complain to without passing judgement. I hope I have found it in this website.

By the way, klovin82, stay strong you will never be alone. I know you are scared and that is ok. Just know this we may not know each other but you have me in your corner.

I am 28 and I found out in 2007 that I have a prolactin producing adenoma. It is considered micro, and my neuro dr says it is benign, my hormones are all normal. I was taking meds but they made me very very tired and with a 4yr old I couldnt go through that, so he said i dont have to take meds. Unless I need them, like if my vision changes or anything else changes. My periods are all over the place, and I still produce breast milk. I also suffer from anxiety and panic and I am curious if it is caused by my tumor, although my hormone levels are all normal. I am always worrying. Any advice?

I have a pituitary tumor and sometime it is behaving but lately it has been taking me for a ride. I got diagnosed in may of 2010. So, I am new to this whole thing. I am however needing just a few friends that can understand what it is like.