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10/17/2009 09:26 AM

Need advice

suseco
Posts: 2
New Member

Good day. I am new to the group, and am not sure whether I belong here or not.

I have been experiencing many syptoms over 2+ years. My recent MRI report says that my pituitary gland has doubled in size since 2007, is assymetric with a prominant right lobe and my pituitary stalk has shifted toward the right, yet there is no distinct evidence of an adenoma. The neurologist said that it is nothing to be concerned about, but has referred me to an endocrinologist.

Did any of you go through this prior to being diagnosed? My Physician's Assistant (I am in the military and i do not get a qualified Physician) just wants to leave things alone, and not see the endochrinologist, and says that I have general anxiety disorder....

Symptoms include Nystagmus and other visual disturbances, vertigo (sometimes extreme), weight gain, menstral disturbances, no libedo, numbness and tingling in my extremities when I get cold, frequent headaches and migranes (almost everyday), confusion, abnormal stress reactions, etc... etc..

I am at a loss. I don't want to give up on trying to fins a Dx, but am starting to doubt myself and think perhaps it is all in my head...

I have an appt with an endocrinologist on the 29th... Any recommendations as of what to ask for?

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10/17/2009 10:18 AM
kkelly2802
kkelly2802  
Posts: 125
Member

Hi suseco,

!st I would like to welcome you to the group. I am sorry to hear about your recent MRI and the confusion and stress that it is surely causing you right now. All of us hear have been through this and right now is the hardest time for sure. I am glad to read that you are going into an Endo. They should start running bloodwork. Usually a full endocrine work up, testing most to all hormones. This will determine if you have any hormone deficiencies that need to be addressed. If it does turn out to be an adenoma.. do not worry about it being cancerous. They are 99% benign. This is something that is very treatable. If your endo doesn't tell you what he is testing for ask him if he is testing your hormones, and specifically which ones. Get a copy of what he is asking for.


10/17/2009 10:28 AM
suseco
Posts: 2
New Member

I have been going over everyone's posts. Wobblyone mentioned something about meniers. I have also been to an ENT concerning the episodic in my ears, pressure and fullness, vertigo, and frequent headaches. He said that he suspects meniers, but it is too early right now to diagnose the disease. Is it common to have meniers with pituitary disorders?

10/17/2009 03:16 PM
JordynsGigi
JordynsGigi  
Posts: 786
Senior Member

Hi Suseco!!

I think youre right with going to the Endo. All your symptoms dont sound like a general anxiety disorder to me. You know your body better than anyone, and sometimes you have to be your advocate.

I think any kind of interference with the Pituitary should call for some endocrine work up, like Kelly said.

You need to have all your hormones checked... see if theyre still functioning.

Dont doubt yourself, or think its all in your head. Hang in there till you see your endo.

Im not sure if, or how common it is to have menieres with a pituitary problem. I think Wobblyone is the only one here.

Im glad you found this group. We may not have the answers, but we are great at supporting and reassuring each other!

Brenda Smile


10/17/2009 06:32 PM
JimKT1
Posts: 281
Member

suseco,

kkelly2802 and Brenda are right. They are some of the members on here that have "been there, done that." More will chime in.

Definately see your endocrinologist, he/she will baseline your hormone levels and help offer treatment options. As kkelly had already mentioned, do not get too hung up on the cancer issue. I was sort of in the same boat a little over a month ago and these two folks along with all the other members (maigrey, deedatwins, wobblyone and many others) assured me that it was more than likely not cancer.

Don't give up. Find what will work best for you.

Your endocrinologist will more than likely say the same thing.

-Jim

Post edited by: JimKT1, at: 10/17/2009 07:00 PM


10/17/2009 10:07 PM
maigrey
maigreyPosts: 125
Member

Make sure they test your ACTH ( adrenocorticotropin thyroid hormone ). Cortisol levels being wonky can cause some of your symptoms. They should do a complete work up for you. I'd stay on top of this and be pushy. "no cause for concern" sure when it's not your brain. Growth hormone as well can cause some of what your experiencing. So start looking up hormones. That will give you an idea of how crazy a little gland can be.

Take care and be PUSHY.

maigrey


10/18/2009 12:49 PM
deedatwins
deedatwinsPosts: 34
Member

Please be assertive and question your doctors. My husband has severe vertigo accompanied with vomiting and weakness. Fortunately, he had an episode on the way into the neurologist. She saw nystagmus movement and showed me. She did an alignment of his head and showed me how to do it. He has had relief for a month now which is such a blessing. Her diagnosis is BPPV--benign paradoxysmal postional vertigo. Research this online and question your dr. about it. His (former) ENT was not up on this and was not helpful at all. Hope this helps. Will stay a prayer and light a candle for you. Deeda

11/21/2009 06:14 AM
moxymusic
Posts: 52
Member

Suseco:

As promised, another of us weighs in with advice:

First, any doc or medical assistant who tells you there's nothing to worry about, given your multiple, painful symptoms (not to mention the fact that you're pituitary gland is twice the normal size), deserves to have the door slammed in their face, with a few choice expletives, on the way out.

Thank goodness you are going to see an endocrinologist. You need a specialist to test and diagnose from here on out.

Second, as other group members have told you, if you have a pituitary tumor, it is almost guaranteed NOT cancer. These things are much more like cysts, and can be treated in a variety of ways.

I have also suffered from horrible headaches, dizziness, and ear and eye wierdness. Any normal human being would feel anxious as a result. There is nothing wrong with you psychologically! What needs to be uncovered is what's going on in your pituitary, not your psyche. Get THAT treated.

Keep us all posted on what the endo says. He/she should order a whole battery of blood work done to test for all those hormones other members of this group have specified to you all ready. I also recommend going online and looking up pituitary adenomas on various websites. Major hospitals, like Johns Hopkins, the Mayo Clinic, Cedars Sinai, UCLA, and Massachusetts General Hospital, all have lots of good information.

And remember, your symptoms can be treated!Be pushy with the military bureaucracy and demand continuing diagnosis and follow up by specialists. After all, you aren't any good to the military in your present condition. They need to fix you! Again, keep us posted, and hang in there!

Cheers, Moxymusic


01/15/2010 05:15 PM
Thinginmyhead
ThinginmyheadPosts: 202
Member

Hi suseco

And another one chimes in and echos all of my peers.

This is YOUR health and YOUR body and YOUR life. Too many times docs offer a symptom based solution, which is no solution at all--it just covers up the real problem and what is really going on. Then there are those that tell you 'it's all in your head' or 'mental health' related. As a social worker--I've known many people diagnosed with Anxiety disorder and your symptoms do not seem to match. The hardest thing to do when you/we are feeling vulnerable or are sick is to advocate for ourselves. It takes alot of energy to do this. I've also found the support from others who have been there, has helped to give me strength as well. You are in the right place.

You may want to ask for a referral to an opthamologist to have testing done as well, if you are having vision problems.

I too doubted myself for a couple of years before I got my diagnosis. Thought it was due to stress, not enough sleep, too busy etc etc etc. In hindsight, I wouldn't have suffered as long with what they called 'migraines' had pushed for more testing--who knew?

Chelle


01/17/2010 01:09 PM
JimKT1
Posts: 281
Member

^^^^^^^^^^^^^

Absolutely agree with you.

The unfortunate fact of life is that even the most caring and compassionate of doctors just do not have the time, resources and manpower to provide the ultimate in health care for us patients. We really do need to be proactive advocates of our own health.

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