Thursday, January 10, 2008

"Within the Normal Range"

I am embarrassed to admit this, but, frankly my frustration level extremely high right now, and I just need to write about this before my head explodes.

I spent 20 minutes this morning crying in my eye-doctor's office. Crying to my eye-doctor. Slow, drippy frustrated tears of complete and utter frustration.

I'm not even sure where to begin.

I've talked to three doctors (well, and now an eye-doctor, who is not an M.D. or a D.O., but rather an O.D. ) in the past three weeks. I've had an MRI done of my head and three tubes of blood drawn, a visual field test, and two other eye tests the names of which I cannot recall. I've had unpleasant things slapped against my eyeball in order to check the pressures.

And I wish I could say what the bottom line is, but, I can't.

I've been having these massive headaches. Pretty much daily. They respond to Excederin or ibuprofen. Usually. But, I'm not convinced that going through life taking excederin or ibuprofen twice a day is a great solution.

In addition to the headaches, I've been working out like a maniac, and also following WW, and having extremely minimal success.

My fingers and my face are puffy. I'm tired.

Did I mention the fricking headaches?

What I have been told, by the three doctors who have looked at the tests, is that I may or may not have a 7mm tumor in my pituitary gland.

This is not news. 2 years ago, I was told, categorically, that I had a 7mm prolactin inducing tumor in my pituitary gland.

Except, now, they are not so sure that's what it is, since, well, someone finally said, "hey, let's test the prolactin levels in her blood" and - guess what? The results of that test? "Within the range of normal."

So...the next response was "perhaps it is an abnormality of the pituitary gland that is ([F**K]) within the range of normal." WTF????? I was also told, "maybe your pituitary gland is just shaped that way," and also reminded that "up to 30% of people can show an abnormality on an MRI."

REALLY? So, pardon my french, but, WHY THE F**K did you diagnose with a TUMOR 2 years ago, and NOW YOU DON'T KNOW???

My TSH was tested, and provided I take my prescribed synthroid daily, it is also, "Within the range of normal".

I suggested that perhaps it was a cortisol producing tumor and was told that, two years ago, your cortisol levels were [F**K!!!!!!!!!!!!!] "within the range of normal."

I suggested that perhaps they might want to run a cortisol test, NOW, on my saliva, which I had read on the Internet was a more sensitive test. The response was that "I don't think that's the problem. It's probably just PCOS."


I called my family doctor demanding his opinion as to whether or not I might have a cancerous 7 mm tumor hanging between my eyeballs. (No one has even mentioned the word cancer. It's just that I hear the word "tumor" and my mind goes there). He graciously said "I can tell you it's not cancer." The reason he knows I don't have cancer is because "whatever is in your head, if it is anything, is still 7 mm after 27 months between MRIs - if it were cancer, it would be growing. Also, cancer in your pituitary gland is incredibly rare. But, if that is what it was, it would have grown."

So, this morning, as I sat with my eye-doctor, and he said, "well, there's a place on your visual field test where your peripheral vision has decreased from your last test, and the size of your optic nerve in your right eye is large, but, it's within the range of normal."

I JUST LOST IT. I said, "look, if one more doctor says to me something that sounds like, "well, I'm concerned about xyz, but, it's within the range of normal I think I will lose my mind."

So, I end up telling the whole saga to the guy whose expertise is solely of the eye. And he said he didn't know what was causing my headaches, that he was sure it wasn't my vision because he was testing my eyesight at 20/20 - but, he thought I should see a neurological ophthalmologist, which is evidently a neurologist who specializes in eyes.

I frankly don't know what to do from here. (Aside from seeing the neuro-eye guy), but, it freaks me out to be told, that, basically, there is something the size of 7 mm hanging out between my eyeballs, it's not what they thought it was two years ago, and, maybe it's just nothing. But, no, they cannot tell me why my fingers and eyes are puffy, or why I have headaches every damn day, and, no, they don't really think these symptoms are necessarily related.

My lunch hour bitch fest has now come to an end. I have people to divorce and tenants to evict and an estate to file, so, I'm going to go practice some law now.

I just wish I could convince someone do more for me than just practice some medicine.



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Anonymous Christina said...

How frustrating. And stressful. (which probably isn't helping much with the headaches!) When I get major headaches I can almost always blame hormones (I have many points in my cycle that give me grief!) ... but that between the eye tumor thing is definitely odd. Stuff like this makes you realize how little doctors really know... but I hope they get it together soon and give you a real answer and some real relief!!

Thursday, January 10, 2008 3:25:00 PM  
OpenID said...

Ugh!!!!! If you connect all the dots together, doesn't it place you OUT of the "normal range"?! Geez. Its like no one is looking at the WHOLE picture. How annoying!

Thursday, January 10, 2008 3:39:00 PM  
Blogger Leslie said...

I could have written this post!
4 years ago I was dx with a pit tumor (pituitary adenoma). I had ZERO prolactin and couldn't nurse my baby. They found the tumor on an MRI. Apparently it was 8 mm. And I say "was" because about 3 months ago I had another MRI and the tumor was GONE! Just poof, it's not there anymore. The tumor they dx me with wouldn't just go away. So basically it was a misdiagnosis. I was having horrible headaches!!! Horrible!
Now I also have Lupus and Hashimoto's so they are assuming it's all related to that.
You say your TSH was normal but did they test for autoimmune antibodies? Just curious.
I am a good friend of Nicki's by the way :-)
Hope you are feeling better soon!!!!

Thursday, January 10, 2008 3:53:00 PM  
Blogger Cliff & Chandra said...

Man how frustrating! All you want is an answer to your headaches, you'd think ONE of the doctors would care enough to do the work and figure out the problem. I hope they figure it out soon for you.

Thursday, January 10, 2008 4:05:00 PM  
Anonymous Anonymous said...

I knew somebody who had terrible headaches and went through several doctors trying to find a cure. He found out he had become addicted to caffeine, which is in coffee & tea of course but also it is in chocolate, many sodas,excedrine and some other pain relievers.

Thursday, January 10, 2008 4:28:00 PM  
Blogger La Turista said...

I know it's exhausting, but after all that lawyering you do for everyone else, don't forget to be an advocate for YOU. Just keep asking questions, and I hope you get some answers, and some relief, soon.

Thursday, January 10, 2008 11:52:00 PM  
OpenID Jek1113 said...

Just like Leslie - this is all too familiar to me. I actually had my 17mm pituitary tumor removed just over a year ago. Before the surgery I was miserable, headaches all the time, tired all the time but not able to sleep, horrible night sweats, etc. Turns out that my tumor was producing 5 times the normal amount of Human Growth Hormone and I catually started growing again at 30. I got my diagnoses from an Endocronologist that I was referred to by my Neuro. He put me in touch with a top notch surgeon in Boston (one of the top guys in the field). If you can with your health insurance - go see an Endocronologist. they will take more blood but they know which tests to run and what to look for. If I had to guess by your description I would say your tumor was a cortisol producing one but I am not a doctor. This more than long enough for a comment - if you would like more info I would be happy to tell you about my experience - jek1113 at yahoo dot com

Friday, January 11, 2008 8:27:00 AM  
Blogger maxhelcal said...

I'm so sorry...{{{{{HUGS}}}}}

Friday, January 11, 2008 9:26:00 AM  
Anonymous Duchess said...

I am STRONGLY urging you to PLEASE make an appointment with the nuero/eye guy. Please, just to cross all the T's and dot all the I's. If the headaches/puffiness persist please request a PET scan.Tumor headaches are characterized by the fact that they start and never stop, kind of a dull ache that just continues. I hope it all goes away.

Saturday, January 12, 2008 5:30:00 PM  
Blogger Nicole - Raising Animals said...

Oh G! I'm so sorry. I was having terrible migraines a couple years ago. I saw my eye dr. and had an MRI, in the end they just gave me reading glasses.....but I still get the migraines. I know how frustrating it can be to know there's something wrong but no one can figure it out. I hope you get relief soon!

Sunday, January 13, 2008 2:29:00 PM  
Anonymous Anonymous said...

This comment has been removed by a blog administrator.

Monday, January 14, 2008 3:51:00 AM  
Anonymous Donna L. said...

I'm so sorry to hear you're in pain. Several years ago I had daily headaches and someone asked me if I used aspartame. It turns out that was the cause in my case. I only mention this because I know you're dieting, so perhaps you're ingesting more aspartame than before. Whatever the cause, I hope you feel better very soon.

Monday, January 14, 2008 10:44:00 PM  
Blogger Space Mom said...

Oh no!

I had the "in the normal range"

My TSH is ALWAYS "in the normal range". I just put in a request for my synthroid to be upped because I KNOW there is something off...

Keep fighting!

BTW: consider what meds you are taking. I developed massive migraines when I started taking an off brand of Clariton. When i took Clariton, no problem. The off brand? I was almost on the floor vomiting with the headache pain.

Wednesday, January 16, 2008 12:14:00 PM  
Anonymous flo said...

I feel your pain and frustration. I am going thru the same thing now. I have been feeling abnormal for years. With severe headaches, which I take Excedrine Migraine for multiple times per day, I'm on Synthroid as well and they say my levels are normal, I'm tired all the time, I have depression and anxiety they can't get a handle on (BUT DON'T WORRY) is what I get told. I tried telling my doctor that I feel light headed a lot and sometimes dizzy or feeling like I'm going to fall. (MUST BE STRESS) is what I'm told. I'm so sick and tired of feeling like this and now by accident they find this 7mm tumor in my pituitary. Why because they thought I had a seizure and took an MRI of my brain. Turns out not to be a seizure but mentions this tumor as a matter of fact. No big deal. I feel this has been the problem all along and no one would listen. They made me feel like I was crazy and just a whiner. Well I'm not. Please let me know how you make out. I am still working on my issues. Also Google "Gamma Knife". You may be interested in this information. Good Luck!!!!

Saturday, February 09, 2008 9:16:00 PM  

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