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Date of last update: 10/17/2017.

Forum Name: Endocrinology Topics

Question: Pituitary Macroadenoma & Abnormal, Undiagnosed Symptoms

 dawn375 - Mon Dec 10, 2007 5:04 pm

Please first let me say thank you to anyone taking the time to read this post, especially to those who may have suggestions for me. Also, I apologize for the lengthiness of my story but I truly feel that all of my symptoms are related and am not getting anywhere with the specialists that I'm seeing as they indicate that my symptoms are not related and make me feel like my symptoms are insignificant (though I have lost many months of my life, family and work).

I am a 32 year old female with one 15 year old child (one pregnancy) who has otherwise been healthy until recently. I live(d) a relatively happy, healthy life with minimal stress (considering this stressful world that we live in). I have a wonderful fiance, son, dad and brother - all of whom are helpful, loving, caring and supportive. The good Lord couldn't have blessed me with a better family and support group.

My family history includes:

Mother - Hypoglycemic / Died suddenly at age 39 of Myocardio Infarction w/o any previous symptoms. Cholesterol levels 300+

Father - still living, age 54. High BP
Brother - still living, age 28, High BP

Maternal & Paternal Aunts, Uncles, Cousins - High BP

Maternal Aunt - Diabetes

2 Cousins Maternal & Paternal Thyroid Disorders

Paternal Aunt - Still Living - Age 51, MS

Maternal Aunt - Still Living - Age 53, High Cholesterol - At age 40 Myocardio Infarction

Maternal Cousin - Still living - Age 47 - suffering from many similar symptoms as my own for 12 years - undiagnosed

I will start my story backwards.

An MRI on 10/23/07 shows a 1.5 cm multi lobular rounded focus of enhancement within the pituitary gland. The mass extends into the surasellar cistern towards the left and slightly displaces the infundibulum to the right. It comes in close proximity to but does not definately impinge upon the optic chiasm.

The MRI report concludes:

This could represent a pituitary macroadenoma. Other Neoplasic Etiology cannot be excluded (I have no idea what Neoplasic Etiology is).

According to the endocrinologist, (I have yet to see all of my labs), most of my hormones are within normal range, with the exeption of a slight elevation of prolactin (38.8) and cortisol (63.5) - which apparently is nothing to be concerned about. My WBC has continually been elevated ranging from 13,000 - 18,000 - with antibiotics offering little to no decreases. Fasting & non fasting Glucose has also been contiuously low (45 - 54). All thyroid tests are also normal.

ER visit labs have eliminated all common infections diseases & auto immune disorders.

The endocrinologist did say that the mass should be surgically removed - based on the size alone and 'may or may not' be causing many of my symptoms.

A visual field test indicates that there is only a 10% chance that my vision is being affected -- yet I can personally attest to the fact that I am having visual disturbances -- some proof is even see in the scratch & dents on my car during the last few months.

The neurosurgeon has decided against surgery as he feels that the mass is not causing any problems at all and does not explain any of my symptoms (that are below). He did indicate that the mass is abnormally shapped and if the macroadenoma had hemmoraged at some point, this "could" have caused "some" of my symptoms. However, if it had hemorraged, it "should" be healing and is a once in a lifetime event and I shouldn't ever need to be concerned with it happening again. According to the surgeon, there is nothing that can or should be done at this time, exception for observation with a follow up MRI in three months.

I was told by the endocrinologist and my primary physician that the Neursurgeon is the best in the state of Florida.

I have also seen a rhemotologist who has ruled out any possible rhemetology related conditions. Fibromyalgia hasn't been completely ruled out but can't be diagnosed considering the MRI findings.

My symptoms have changed my entire life and are affecting my family, relationship w/ my fiance, finances & employment. Any suggestions are most helpful.

My symptoms that all continue to date began as follows:

Late '04 Gradual increasing depression. Throughout the last three years, various dosages of Zoloft, Prozac, Welbutrin & Lexepro have offered little to no improvement.

Mid '05 Fatigue begins, worsens as the months pass.

Sept. '06 - rapid weight gain (85+ lbs to date) around this time, extreme fatigue also becomes a factor and continuously worsens.

Poor concentration begins and continuously worsens.

Aug '06 - Allergy/Sinus symptoms appeared for first time in life. Would come on suddenly and disappear just as suddenly.

Began Feb. '07 Headaches that would severely worsen upon bending over.

May '07 - anxiety symptoms begin and have continuously worsed since then to a point that my Fiance has called an ambulance 2x's. Xanex or Ativan offers no relief.

Headaches continue with changing pain symptoms and continue to worsen through July 29th when the worst hit and sent me to the ER. CT was normal. All blood tests normal.

Beginning of Aug. missed menstrual cycle.

Mouth sores and blisters flare up about once per month.

Mid August - Discoloration of hands, resembling Raynaulds Phenomenon

woke up one morning with severe body pain that seemed to resonate throughout my bones, joints, muscles, etc. was unable to fully open right hand (thankfully chiro fixed the hand for me).

To date, my fingers occassionally fail to work properly.

Body pain continues on a regular basis. On a scale of 1-10 pain ranged from 4 - 9, depending on the day. Pain in various parts of body. Initially, the pain would be localized to either the upper half or lower half of body - pain then continued to worsen to affect lower and upper simultaneously. Pain in torso area also began -- lower left back area, right above hip, pelvic area, beneath front right rib.

Pain varies in its signals from day to day ranging from burning, stinging, stabbing, ribbing, brusing, spraining, prickling needles, electrifying shocks.

Short term memory problems begin.

End of August - hands and feet begin to go completely numb following by a tingling sensation and the numbness subsides

Occassional blurred and/or crossing vision. Occassional peripheral vision disturbances also begin.

Early Sept. Extreme mood swings/emotional outbursts

Involuntary muscle movements & twitching throughout body.

Nerve sensitivity when touched.

Complete loss of libido. ( I have always been VERY sexually active & easily satisfied)

End of Sept. Numb face, lips & tounge.

Early Oct - urinary urgency, incontinence & strong smell.

Intense carb cravings.

Inability to feel full after eating.

To date, all of the above symptoms contine and vary in intesity from day to day. I do have some good days lately and have been lucky enough to have a good week here and there but still have a lot of bad days in between. The rhemetologist recently prescribed Lyrica for the pain and fatigue. It does seem to have helped the fatigue a bit but doesn't seem to do anything for the pain. My primary occassionally will prescribe a week of Lortab for the pain which does help the pain and anxiety tremendously but naturally caution needs to be taken when prescribing narcotics.

If someone could please give me some direction to go in, I would be most grateful. Should I seek additional medical opinions? See other specialists? I really want my old self back again.

Happy Holidays To All.
 chochmeh1 - Tue Jan 22, 2008 4:56 pm

i am sorry for your pain and i just posted about the exact same thing! i have an anterior pituitary microadenoma (.9cm) supposidly non-functioning...i got a book from the Pituitary Network Association called, "It's All in your Head." i find this answers most but not all of my questions...i am having muscle twitching, cramps and stiffness, burning, numbness, some muscle wasting...i have been to neurosurgeons, cardiologists, endocrinologists and neurosurgeons and still don't have definitive answers.
1. It's good you know about your P-tumor...many don't and go undiagnosed until the thing bursts...
2. The neurosurgeon doesn't want to do surgery because he may end up taking all of your hormone functions away (this can happen), and it can grow back...
3. Surgery won't take place unless there is an overproduction of GH, ACTH,TSH, ect. or it impinges your optic nerve, or the thing just bursts...
4. Signs to run to the doctor are:
can't get out of bed-extreme fatigue
really low BP/temp/heart rates - (get a BP monitor and thermonitor and check daily.)
irregular menstral cycles
severe headache
5. Most P-tumors are prolactemias which causes Weight gain...there are medications for prolactemia.
6. Follow-up is very important to
A gauge growth
B hormone function (make sure they check your electrolytes also)
i suggest every 4 mos if asymptomatic...
7. Get a surgeon who removes these things all the need someone to know the difference between your tumor and actual pituitary gland...this can save you from taking hormones the rest of your life...all of them! Let's face it, it's gonna happen get a good one lined up.

As for the cramping/twitching/neuropathy...well, i have it too and i DO believe it is hormonally induced...i think that your hormones can be fine when they test it, but what about the rest of the times??? non-functioning P tumors does not mean that the P is making enough hormones all the can have Panhypopituitary...and i believe you can have it at variable rates....For instance, when i was brought into the hospital i had no cortisol in me...i was flopping like a fish and thought i had a stroke...the endos did a stim test and found i was making enough ACTH (the hormone the Pituitary sends to stimulate the adrenals)...this is the argument i have with the endos-that i am not always making enough...especially since my BP bottoms can double check with neuro, but i believe the twitches and cramps are hormones and not enough of them...the endo tells me that wouldn't cause twitching but, i'm not so sure.
another indication of low cortisol is salt craving, low serum sodium levels (can make you feel like you are dying) low BP, and feeling cold all the time.( i believe my PN is a result of this too...), low resistance to infections and a really hard time getting over them (me)
hope this helps and be proactive!!! don't ever take no for an answer or let them tell you it's because you are an emotional hypochondriac-what a cop out for docs-
i believe these statements from docs should end in large settlements to patients.......(i've been told my symptoms are conversion LOL)
it is all in your head and it can cause all kinds of problems in your body...
as i tell my family's a wild card in the deck....

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