Didn't sleep last night

[sue3708]

Getting my lab results yesterday really freaked me out.  I still don't know exactly what they mean, except that I'm in for a  lot more testing.  A lot of bloodwork and another brain MRI (last one 4.5 yrs ago)  I didn't sleep at all last night.  i took some benedryl to try and rest but it didn't work too well.  I don't know how to get through this.

For those who don't know...I've been feeling ill for 2 months.  maybe more.  I've been tested up oneside and down the other.  Nothing really found.  I started to notice a pattern and thought maybe it was related to my menstral cycle and called my PCP.  He ran soem tests and my prolactin level is very high.  This hormone comes form the pituitary gland in the brain.  High levels are usually due to tumors on the gland.  They are most ofter benign.  but still I'm a mess.  I don't know when I will get into see an endocrinologist.

Please, I need some support.

[fuzzy882]

I feel for you.  I can remember when I went to my dr. about a year ago, he did some routine blood work, I get the call, come in so I can go over this with you, this was on a friday afternoon, all weekend I was a wreck, I had my obit. done, the clothes I was to be layed out in picked out, I was a gonner.  Now, I am a nurse and you would think that I would have just a slice of knowledge and know the routine, but when It's you, that go's all out the window. Monday came, off I went, hadnt showered or even combed my hair, why should I, I was dying and knew it.  He told me my white count was high and I should see a cancer specialist, WHAT??????  Ok, now, all I had learned finally kicked in,  I had, had a chronic sinus infection for some time, DAHHHHHHHHHH.  I went on antiobiotics, waited for a few weeks redrew the blood, NORMAL...  So you see, I know it's hard not to get worked up.  The dr.s have to do what they do to rule out everything. Some dr's can be alarmist, and say out loud things that should not be said until further testing is done.

You hang in there Sue, stay on the board here with us.

[shnin]

Sue,

am praying for you too.  I think you may realise that many of us think you are courageous and strong.  you are facing the worst, and imagine how cool and fantastic it will be if it is not the tumor.

[Bambi1979]

You hang in there!!  You need to eat something though, that's only going to make you feel worse.  When do you get your endocrinology consult.  I am still praying for you.

[sue3708]

Not holding up too well, not eating but trying to drink.  Feeling ill, just trying to get through each day to where I will find out more info.  A lot of crying.  Just spoke with the on call dr. and said not too  much we can do but wait for an endocrinology consult and try to stay hydrated.  Thanks for your thoughts.

[Bambi1979]

Hey!!  Just thought I'd see how you were doing and to let you know I've been praying for you!!

[suzi-q]

Hang in there Sue.  There will be many steps to take before you get to the end of this, so take it one at a time.  First you have to see if there is a tumor there.  And, as stated by others, it may be treated with medication, don't jump to brain surgery just yet.  And if for some reason it is, you deal with it then.  Just the fact that most likely it is benign should help you take the baby steps needed here.  Take it easy and try your best to think positive.  I will pray for you.

[heartfluttersflyawayplz]

you know am not sure what she takes , i do know it has srunk one down a lot smaller . i will ask her .

[JSGeare]

Call me crazy, but isn't PREGNANCY the MAIN cause of high prolactin? Any chance of that in your case? Otherwise, according to what I read, a benign tumor is the suspect -and control with a drug is the first choice of treatment. But I'm no expert, so be guided -as I know you are, by your physician. And as I said in a previous post, a positive test means -first and foremost -more tests, which yiu have seen.

Regardless of test results and indicated treatment, the whole waiting game is a huge psychological challenge whether or not we are prone to panic and anxiety. If we had it in our power to make the whole thing go away -which is what I pray for- then everyone one of us would make the whole thing just go away -you know that.

Meanwhile, what we DO have in our power is empathy for your situation and a cyber group hug -so we give that to you. And, for what it is worth, each of us is on the edge of our seats waiting to see where we go from here and to the extent we are able -we're going with you, Sue.

Please keep us in the loop.

[Jerzeegal]

Hi Sue,

In your post you said "usually benign tumor"  but ( and I know this is a big but) a high prolactin level can be caused by other things as well.

Take a deep breath and wait for the rest of the test results... and I know that's easier said then done. To make a long story short I had a CT scan a few months ago to search for kidney stone and that showed an abnormality of my pancreas.  I of course thought I had pancreatic cancer and put myself and my family thru the ringer. A third CT scan with contrast and that came back fine.

So try to stay calm since stress and anxiety can really cause your system to go wonky and realize if it indeed is a tumor and they are typically benign then it can be managed with meds.

Keep us posted and take care.
Jerz

[sue3708]

Do you know what meds your friend is on?

[cj29]

Just want to let you know, that I have had some preliminary testing done before that originally pointed out to something much more severe.  I had an ultrasound of my stomach once when I was complaining about stomach pains, and with the result of the ultrasound, they thought I had a tumor in my pancreas, which was really bad news.  I had to wait for a CT Scan for weeks, so I know how you feel,  and it came back that I was okay. Same thing with a thallium stress test, the cardiologist said it was inconclusive and said that it was nothing to worry about and I even had a more invasive procedure which turned out to be okay.

You also said that it is probably benign; which is also is a good thing.  There are probably multiple reasons for the results of your bloodwork and if your doctor thought it was an immediate danger, he would not let you stay at home and wait for further testing.  I know it is so much easier said than done, but God Bless and please keep us infomed!

[heartfluttersflyawayplz]

hey sue try and step back take a breath and calm down, no its not that easy i know ive been there so many times and after its all over its like wow why did i make it so much worse than it was. but we cant help it right. i have a friend who has two tumors on the pituitary gland she takes meds for them everyday , they are not going to kill her , she did have to quite her job somedays shes just to tired others shes like a 16 year old so hang in there, dont think bad stuff it will only flare up your anxiety and make it a lot worse , try and sleep  it helps your body to fuction better with all the stress your going through. here if you need to talk.Barbara