Madness of a microadenoma

[iheartkarma]

Perhaps I really have just gone mad.  Yesterday I saw yet another endo who completely dismissed my issues that I believe are related to my pit tumor.  Yes, like many others, my story began with symptoms that were all over the place.  I had a baby almost 5 years ago and within 6 months of giving birth had lost all the weight.  Then over the next 6 months I proceeded to gain 40+ pounds for absolutely no reason.  I was told I must have post-partum depression, my TSH levels were high which must be post-pregnancy thyroiditis, I just needed to eat less and exercise more, I was so sick and nobody listened to me. I was written off.  Although I was unable to breastfeed due to literally no milk production, I suddenly started lactating over a year after giving birth.  I was miserable, fat, depressed, had pitting edema in my legs, blurry vision, and was lactating and yet everyone told me nothing was wrong with me.  
I finally went to see a specialist in another city.  After many blood tests, he ordered an MRI which showed a pit tumor (3-4mm).  I tried cabergoline even though my prolactin levels were only on the high side of normal.  It made me stop lactating but had no effect on the tumor and gave me terrible headaches so I stopped.  Nothing in my labs was terribly out of whack except my TSH for which I was given synthroid.  I do not have hashimoto's or thyroid nodules or any other reason to have hypothyroidism.  Over the past couple years, I have cycles of feeling sort of normal and then it all begins the same way.  My feet/ankles will start swelling, I can't think clearly, I cry over everything, my weight goes up drastically.  This happens for about a week or two and then just as suddenly goes away.  No one, except for me and my husband, believes this has anything to do w/ my pit tumor.  Apparently I am just getting older and this is normal.  I am so discouraged and disappointed.  I exercise hard for 45mins at least 3 days a week.  I don't eat like a gluttonous pig.  If I didn't do what I do, I'd probably weigh 300 pounds.  Yet, despite my best efforts, my base weight won't budge.
I was told yesterday by an endo "expert" that there is a reason weight management has spun off from endocrinololgy..."they are completely separate issues" and "you don't look like someone with an endocrine problem".  Seriously.  So I am back to square one, where no one believes my waves of symptoms are due to anything but age (I just turned 40).  I know my body and know something is not right.  
Why is it if you don't fit into the perfect little box that medicine has created, you must not really have an issue?  I  worked as a ER nurse for years and am completely disgusted with the healthcare I have received  and am baffled by the ignorance of an entire medical community who believe a small pit tumor can't possibly be symptomatic.
So I guess I go back to my madness and take some measure of comfort in the fact I am not alone.  I'm starting to wonder, is this all just in my head???

[rumpled]

Been there, done that - I have seen professors that are teaching people, sadly, wrong stuff... one that had me read my pathology aloud and he said it was all normal to him. Some docs don't like hyperplasia as a cause of Cushing's (cause you know abnormal cells cannot be an issue right!) and so the fact that my symptoms were there and that my ACTH is super high now and my IPSS documents the source... well it just ain't right. My problem was removing my adrenals even though I finally got him to admit that people with adrenal issues only get ACTH readings around 300-400 not 3000-4000 like I have so dude, obviously my cells up there are still active! I like you want to kick another body part so the eyeballs fall out...

So you have to plug along and still look for a decent doc - they are out there but you have to keep looking as the old teachings (like this old guy) are still being perpetuated (and that guy is at a top college! ugh- which means more endoduds to come) so it means you have to really know your stuff and have your files ready. I was called a liar many times and told my issue was diet, exercise or something else until it finally just came down to it was really and only endocrine.

Lab error - it really is awful. Held me back for years.

[sage1973]

dear  madness what is your status now?

[iheartkarma]

Hi there.  Most recently I saw the Director of a Diabetes/Endocrine Center who is also the President of the American Association of Clinical Endocrinology so I thought he might be different.  He wasn't.  Shook his head and said nope, you're tumor is not causing all your problems.  You just need to go to a weight clinic.  I wanted to rip his eye balls out and thank him for wasting my time.  I did 2 night salivary tests which were normal and many 24 urine collections which ended up to be a waste b/c the lab forgot to document the volume in any of them.  If they had, then two of those tests were high but could not be confirmed w/out the volumes.  
The MD who diagnosed my pit tumor said that my TSH is likely due to central hypothyroidism (pituitary malfunction, not thyroid gland) and synthroid will likely not help.  My T3 is ok and T4 only slightly low.  

If you have any other ideas, I'd love to hear them.  It's just all so frustrating when one endo tells you that you look like a person w/ and endocrine problem and another tells you that you don't.  

Thanks for your time reading/answering this.

[rumpled]

What type of specialist did you see and was he/she at at pituitary center? Even some of those can be endoduds - so it pays to get copies of everything - all MRIs, reports, labs and all to see what was tested and actual results.

A TSH that is higher (which is of course lower - it is so confusing!) is actually not usually a pituitary issue but a thyroid one. I can explain it better this way - hormones work in loops and if it was the thyroid the TSH would not function so like in my case, my TSH is .0006 or somewhere around there but with a TSH like that, the pituitary is trying like heck to signal the thyroid so they really need to look more at the thyroid as it is more indicative that perhaps that end of the loop is not working. Were an free T3, free T4 or other actua thyrod tests done?

As for the pit tumor, I had a couple myself and there are several types and the testing MUST be specific to the type - plus the testing has to be done correctly - as in the correct time of day, fasting and the lab tech (and you) cannot goof it up. So there are many many variables in lab error, doc error and so much - it held back my diagnosis as well as many others that I know.

You met an endodud - there are signs of endocrine disorders that you can see but you have to look for them. Tests can be run. Clues are there and some are subtle - and some people have less symptoms with high test results and some have lots of symptoms with lower test scores. I had a cyclical form and that made testing a night mare.

It was all in my head too - so I understand. It takes persistence on your part - and knocking out any and all other conditions (so I saw a LOT of doctors) and putting together my own case. All when you feel less like doing anything.