GP tells me that my pituitary tumor is nothing - I'm not sure what to do next

[nattt]

I went to my GP about 4 weeks ago as I had developed a large hump on my back (it seemed quite sudden).  I had googled the possibilities and saw that Cushing’s Disease was a possible cause.  My father had a very large pituitary tumor that destroyed his pituitary gland, so I was eager to find out what was going on.  On December 23rd my GP called me the results of my MRI, I have a 6mm adenoma on the right side of my pituitary gland.  He also tested my cortisol levels and told me they were normal and I therefore did not have cushing’s and the adenoma is nothing to worry about – he told me some people just get them.  He has not referred me to a specialist and plans to do an ultrasound of the hump next.
Note: that I also had an x-ray that did not show any neck/spinal problems.
I would love your thoughts and advice as I am not as relaxed about the issue as my GP.

[rumpled]

Geez, talk about late! That is way way after... that is like setting a non-broken bone...

I hope he learns - my hubby at first got super angry but now he has learned that when I get super confused it is a sign that I am going into an adrenal crisis - and I can go down pretty fast so he quickly gets me to take meds and salt.

I think it takes them a little while but now they get it... men... teehee!

[lbedford]

Yes, the seizure was the weekend of the 4th, 5th and 6th of December.. I waited to see my endo on the 22nd and then waited till the 29th for the EEG test... From the 6th to the 29 for the EEG was a little over 3 weeks. That would be my guess. Next time my husband is taking me to the Emergency and demanding my Neurosurgeon meet me there. I had a tiny one the other night, only a couple hours. The problem is that when I go into one, my husband can't understand my speech - that is his first clue, then I guess I am so angry and won't do anything he says. I told him to make like he's playing a game with me to help me get dressed and then call 911. I don't have a clue myself as to what's going on - I don't remember anything... but, he says he's never seen me so angry.. he can't do anything with me. Thank God for that man!!! He must love me VERY much!!! I sleep for a long time afterward and then my head is foggy, memory the pits and real tired.

[rumpled]

Perhaps it was the timing - they got the EEG on too late?

[lbedford]

Just got my EEG report back tonight from the seizures... gues what   "normal"

yeah, yeah, sure, sure.

[lbedford]

Maybe it's your security software intererence... like McAfee will cause numerous problems, try shutting your security down and try it again... then put it back on once you've tried or successfully viewed them, just a suggestion.

Is there anyone else out having a problem??

[testdeprived]

i dont see them. im sure im ntot he only one having this problem. idk how rumpeld saw

[lbedford]

Thanks... (AGAIN)

[testdeprived]

they dont show for me rmp

[rumpled]

Click on her name above. The pictures will be in the center, top of the page - there are two, just of her face.

[testdeprived]

its in a blog?  iwent to your profile and looked under photos maybe im missing them?

[lbedford]

ok, now I'll nominate you the coordinator for this blog lol.. any suggestions for testdeprived as I'm not as proficient at this as you are... haven't blogged that much, therefore I am illerate in that dept (well, not only in that depart :-))... any suggestions??

What would we all do without you??  Don't want to find out..ok!!!

[testdeprived]

yup

[lbedford]

Are you stating you couldn't view my photos?

[lbedford]

Just like it's been pointed out by others here, I think it's best if you throw away the preservative packet in the jug. I had the only high reading without it (I've had 6 altogether over the past 2 years). Be sure and refrigerate it.. I didn't know about the freezing of the salivary tubes until I read it here after your posting... thanks guys!!

Like I said I'm going to request the midnight serum cortisol, not the one where you stay in the hospital, but the walk-in. I've read the medical journal that has allowed for walkin-ins and they stated they had a good sensitivity with a cut-off value at  8.3 ug/dl. This test is referred to as the F24 and it states that the F24 is superior to the 24 hour urine (UFC) in the diagnostic approach to a patient with suspected CS.

Regarding the dex test, they won't do it unless they get a high cortisol reading from one of the other tests i.e., 24-hour urine or salivary.

Just a thought...  Best of Luck and God Bless

[testdeprived]

Photos (2)
No photos

[lbedford]

Looks like I need a psychiatrist...right  (lol) Honestly, you've said it in the past.. endodummies, and now I'll add to that list, neurology-logicaldummies.

[rumpled]

I looked at your pics! WOW! What a difference... but I bet the docs will start off that you are 15 years older blah blah blah but your ears have disappeared...

I hope you can find a decent doc.

ps - look in her profile!

[testdeprived]

no you didnt

[lbedford]

I'm sorry, I didn't mean to hog all the space today, I really do understand your concern(s), and I'll be praying for you. what got me going was the way they measure the UFC cortisol. it's purturbing to say the least.

I hope you enjoyed the part I put in on the blog that was written by a gentleman from the pituirary orginization... I bleive it gives all of us a more indepth understanding and not to give up, but to keep fighting the good fight.

I get so frustrated at times, it's unbearable.. I've been fighting a few years now and as for me, I'm not a patient person to begin with. Please look into the midnight serum cortisol blood test, if all esle fails. I've learned of the guideline values that they go by so that you can just go to the hospital in your town for this procedure (hopefully yours has one), have the blood taken and you don't have to stay, they have researched the values for walk-ins, so that really helps. I hear it is one of the better ways to confirm or deny cortisol. I so hope they find the answer for both of us SOON... thanks and all the best. I posted a picture of me 15 years ago and today... I don't feel the same much look the same  God Bless

[lbedford]

I just added a couple of pictures of what I looked like 15 years ago and what I looked like last year... Thanks for all the help, guys!!!

[testdeprived]

mornigns for me are 3pm...and i am awake at 5am...no mattah how hard i try to reverse my schedule

[testdeprived]

im confused myself on what to ask for. my last cortisol test was urine and was high...idk if i should ask for another urine...i feel the WORST in the mornings.

[lbedford]

Please forgive me, I'm finding it hard to concentrate today and I'm all over the place. Thanks for the advice rumpled...as usual, you're always there to give advice and help.

I am going to insist on a midnight serum cortisol along with my MRI this time, because I just read a lab report that the F24 (midnight serum cortisol)

"UFC would have failed to achieve the correct diagnosis in a significantly higher number of cases than F24" "The prsent data demonstrate that F24 is a reliable test for diagnosis of CS"

And even though my Dex test showed <1 ug/dl, they're stating "A successive study performed in normal conditions of clinical care has shown cortisol supression to be less than 2 ug/dl regrading the Dex results and CS

If that doesn't work, then I'm going to have them do a complete write up of my thyroid. Every symtom I have can actually be quoted under the Hypothyroid Symtom check. I know it is all from the pit tumor, but these dang endo's have to KNOW which hormone and even when they find the right one, they classify it as "oh something must have caused a wrong reading"...If any of you think I'm on the wrong track or have better suggestions.. I'm open for them.  My neurosurgeon stated 15 months ago before he was going to do the surgery, that all of my symptoms would reverse themselves after surgery, because if it is not treated and becomes a macroadenoma, then chances of a cure are difficult not to mention the hormone therapy that would be for life. Catch them when they're microadenomas less than 9mm and there's a good chance of receovery, but when they reach 1cm, it's much tougher.

[lbedford]

My problem was that when I went to the Endo's office, he didn't come in with his computer and of course turned to me and asked if I had them done?? I had them done (I'm very meticiulous when it comes to my testing) one thing I did find out here is to freeze the salivary tests... would you bellive I've been told more than once "Oh they're fine even if I don't refrigerate them ??? I picked the cartridges up at LabCorp and retunred them to Labcorp. could it be because the doc couldn't find the results he made them up?? After all I had a high cortisol test and he said I drank too much liquid. The problem here was that I had one jug that I filled, but there was an overflow, so I put the rest in a tuppperware dish and took it in. The nurse told me I could take that back home, I just about blew up and then trying to explain to her that is why it's called a 24 hr cortisol.. she couldn't get the picture but finally had me go in the bathroom and dump the rest in another jug. THEN when it came back she had listed the amount as being 3750 which had my endo all over me. I had one jug and about 1 cup over. I'm dealing with imbacils ALL the time...The only high cortisol reading, and it can be explained away by an incompetent nurse that probably wrote up 2 jugs full, when it was only a cup over the jug??? Then when I went in at 8 am for my dex blood test.. I was there at 7:45, the door opened at 8, but the nurse never showed up till 8:20 and then messed around for another 20 or so minutes looking for the write up that she couldn't find it, she said, "Oh I'll' just take it and leave it on his desk".??? No wonder he doesn't have any reports, and the reports are being mixed up in volume... They probably just went and dug one up real quick for the salivary and I didn't get a dex test report until yesterday and I was in his office on Dec 22nd?? The dex test reads a <1  I asked him on the way out since he seemed so busy, if he would order anothe MRI, he said something, so when I got to the nurses station, I asked if he was ordering and MRI, she said yes, I asked if it was with contrast, she said she'd go ask the nurse, came back and said no.... I was out of there and called my GP and told him about what just happened,  he NO, it has to have contrast. For the acute mental attacks he send me to the Neurologist, but because the old endo reports were in there as Asymtoatic and too small to cause problems, the Neurologist skirted the issue of the pit tumor like the plague and suggested a Psychiatrisit.. I was obsessing.  So that is why, when I get up the strength I'm calling my GP and see if he will send me back to my original Neurosurgeon to order x-rays of my brain to see what has developed... since seeing him last I have atrial fib, bordering on diabetes and now acute mental attacks with headaces and light hurts my eyes.. it's weird but the peripheral problem comes and goes, I'v had it twice in about 2 months.. go figure. The only ones I trust right now is my GP and my Neurosurgeon.