Symptoms associated with non-functioning pituitary microadenoma

[Blue727]

I was hoping the members of this forum could help me come up with a comprehensive list of symptoms associated with a non-secreting, non-functioning, Pituitary Microadenoma?  I have seen quite a few sites that list symptoms, but it seems as though they are all quite different.

Thanks for your help!

[susie16]

Ask your doctor if you can go on Armour thyroid. It is a natural thyroid that has both T-3 and  T-4.  This worked for me much better than the big pharma thyroid drugs like synthroid etc. Those have T-3 which the body then needs to convert to T-4.  I had to find a naturopath to prescribe this for me, but the difference in how I felt was like night and day!

[rumpled]

The extreme fatigue could still be hormonal imbalance. Are you still being checked? Is your sodium and potassium ok?
Have you had your renin and aldosterone tested?
Have you seen an ENT to check out your ears?
A neuro-opthomologist to run visual fields?
If your doctor is not listening, you may have to find another.

[evaartist]

I was diagnosed with a nonsecreting pit tumor.  It as removed as it was compressing my optic nerves.  My vision improved although it will never be as good as it used to be.  My problem is ever since the surgery  which has been one year now, I am daily experiencing extreme fatigue and now I feel sort of unbalanced when I walk, or turn too quickly etc.
I have tried to complain to the doctor for help but so far I have not had any help with this.  Does any one else have any of these symptoms
Thanks
Eva

[SarahB79]

I just found the list of things she ordered for me to do before my next appointment (which isn't until April 2).  I have also decided to be more proactive and request an appointment at the Cleveland Clinic.  

dex suppression: Cortisol Serum (to be done seperately from the below tests)

ACTH
Aldosterone, Serum
CBC w/ auto diff
Cortisol Serum
DHEA Sulfate
Ferritin
FSH
17-Hydroxyprogesterone, Serum
IGF-I (Somatomedin-C)
LH
Plasma Renin Activity
Prolactin
Testosterone, Free and Total
Vitamin D, 25-hydroxy
T4, Free
TSH
Comprehensive Metabolic Panel
Hemoglobin A1C
Lipid Panel
Microalbumin/Creatinine Ratio
T3, Free

24 hour urine Cortisol to be done seperate

[SarahB79]

Thanks, I think all those she ordered.  :-)  She went through the list you gave me a few weeks ago and added them all to the order form (except saliva test).  

I have been reading up on the addison's stuff and I have a ton of the symptoms.  Except weight loss, mine is gain.... and especially in torso and face.  

[rumpled]

Alas, she ordered tests that will not address the salt. You are craving salt for a reason and that is the adrenals. If your endo is not experienced with adrenals (few are, sadly), then get copies of the tests you have and find another.
The salt is a huge clue - and she missed it.
Read up on some addison's sites - you will see salt references in some of the stories. People were drinking pickle juice, eating salt, etc... you need tests on ACTH and cortisol, renin and aldosterone.

[SarahB79]

Thanks!  Have I mentioned the crazy salt cravings I have been getting the last few weeks?  I mean I'm talking every few days it hits me so hard that I go the restaurant next to my office and grab like 6 or more salt packets and eat them!  

I gave her at my last appointment the list of tests you recommended for adrenal.  She ordered pretty much everything but the saliva test.  24 urine cortisol, dex suppression, ACTH, Ferr, and a bunch of others (can't remember your whole list).  So I will be doing all these tests over the next few weeks before my next appointment which isn't until April 2nd.  

Today I did an oline search for Adrenal Pain, and I found tons of articles that suggest insuffiencancies can cause a ton of my symptoms including flank pain!  My endo said she has never heard of adrenal pain!  

With my immune system being so out of wack and WBC being all weird I think it's wise I get these tests!  

[rumpled]

Weight gain like that deserves more adrenal testing. I had both a prolactinoma and Cushing's disease at the same time. I know several others that had the same. It is not common, but it can happen. All your hormones should be tested. In my case, I had both tumors but it can be one tumor just pressing on the wrong spot(s).

Even if the tumor is small, you are still suffering. I would still get another opinion.

[SarahB79]

Yes, blood tests every 8 weeks on just about everything you can think of.  MRI twice a year.  After a year or two I think she will probably reduce the frequency of everything, but still monitor it.  She ordered about every adrenal test this last time which I haven't done yet and recommended maybe a CAT or MRI of adrenals since I have really horrible pain in that area every time I am under unexpected stress.  

aurora2779 - mine said that size is also a factor when considering surgery, but also how well you respond to medicinal treatment first.  Mine is a microadnoma... and so far medicine is working, they said the dostinex will stop the production of the prolactin and therefor decrease the size of the already small tumor.  Just has to be monitored.  I too am extremely embarassed by the weight.  I have always hovered around 95-110 lbs my whole life and now I am 160 lbs.  (5'1")

[rumpled]

Size is not a factor in pituitary tumors. You need to find an experienced doctor.  As long as you have too much cortisol, your body is being damaged. Get copies of your records, and get to a doctor that knows what they are doing.

Your tumor may not grow - still, you need to get it out. What are they waiting for?

[enzymelover]

   I don't understand why a neurosurgeon wouldn't want to remove an adenoma that is causing your symptoms, while it is small. Transphenoidal surgery is much more likely to have a good outcome if the tumor is small. Why wait for more trouble? Can you get a second opinion on this?

[aurora2779]

I too have a pituitary adnoma. It is ATCH secrecting. It sectretes too much cortisol. The stress hormone. The doctors will not reomove it because they say they say it is not 'big' enough. When they told me that I thought how can a tumor that is causing problems not big enough to be removed? I also have other chronic pain issues, I have fibromialgia and arnold chiari malformation. They are painful conditions. Although I think that if they remove this damn tumor alot of my illnessess or pains would subside. Or atleast I hope so. Back in 2005 I had gastric bypass, this was before I knew I had cushings disease. Needless to say it failed because Ive gained all the weight back. It *****. I hate going out into public. Makes me very embarrassed and feel like a failure because no matter what I try I can not get rid of this weight. Not to mention the pigmentaion of the skin on my neck and under my arms, like in the armpit area. It always looks like there is dirt there, but no matter how hard you scrub it wont go away. its a skin pigmigmintation due to the cushings. I also have the what they call the buffalo hump on the back of my neck and the excessive bulge around the middle of my waist that will not go away no matter what i do.

In order for the doctors to finally figure out I had cushings they sent me to an endocrinologist. He had me take a urine test. I had to urinate at 11pm then again (i think first thing in the morning) the numbers at the 11pm reading were supposed to be a certain number and it was wayyyy off.  I then had to take blood tests. After that I had to take and collect a 24 hour urine sample. I failed them all therefore ending up with cushings disease. I go in for an MRI every 9-12 months to check the growth and progress on the tumor. It has effected my vision and also my balance. I am only 29 years old with 2 sons and I have to walk with an embarrasing cane some days because I am just so weak. Talk about embarrassing.

If anyone has any other questions that I may have left out feel free to ask. I'd love to help if I can. Till then hang in there and take care! Hope things get better for you.
Aurora

[Lsuarez777]

Thank you so much for the 411 on this.  I really appreciate it.  I was on Prednisone for about 6 months and had the Rheumotologist take me off because it was interfering with my surgical healing on the arm and a Lipoma that was removed this December.  I am so glad you told me about what it can do.  I gained 22 pounds on the prednisone and my face turned into a hot (burning sensation) ugly boil filled rash.  It was not only painful but embarrassing.  I am better (1 month now) since I got off the prednisone. The only thing is that now my Lupus is flaring up again.  We are working on that...LOL...

I sure do hope and pray that you live a long comfortable life....What a journey for you? Geeeeeeshhhh.....

[rumpled]

Odds are that you had some sort of adrenal crisis. You can contact the hospital's medical records department, get the form and get your records. It will cost you, but I get all my records. It is important to know what happened - to know why you were hospitalized and what the tests said. Get at least the lab reports and doctor's notes.

Hashimoto's is an autoimmune disease where the antibodies attack the thyroid and slowly make it shut down, making a person go hypo (or slow) thyroid. I also had a follicular nodule on one side and colloid nodules on the other side, as well it was enlarged and not functioning well and I had enlarged lymph nodes all around it.

Cushing's syndrome is too much cortisol. It can be from a pituitary tumor (that is called Cushing's disease and that is what I had), adrenal tumor, taking too much such as prednisone for other diseases as asthma, MG, inhalers, etc,, a tumor anywhere in the body (very rare), or also a rare cause is too much alcohol or depression, causing a type called psuedo-cushing's.  All have to be treated by looking at the source, and then treating the source.

I am er, not ok. I have/had multiple endocrine and auto-immune diseases, many surgeries and now I am on disability. The Cushing's destroyed a lot as it took a long time to get diagnosed as the docs would think the weight gain was my fault, not the tumor... I am now panhypopituitary which means I have to take replacement hormones for most if not all of the hormones. It is a job.

Cushing's is fatal if untreated and I have lost friends after treatment as they were just too sick. They ended up with heart, muscle, bone,and blood issues. I have those issues but so far I am hanging in there. Cortisol does a number on muscles and bones and all. I am just coming out of two frozen shoulders.

Sarah,
Just keep in mind that you need monitoring. The tumor is still there. Also, has he checked and going to keep checking your other hormones - thyroid, cortisol etc.?

[SarahB79]

I am still on the dostinex... fairly small dose though, .5 once a week.  I have now been on it for about 20 weeks (maybe a bit more) and the dr. has offered to consider taking me down to .25 once a week in April as long as the next roud of blood work shows prolactin levels still very low.  I went from 50.5 to less than 1. :-)

[Lsuarez777]

Hashimotos and Cushings???  I have read numerous things about these but don't quite understand much.  Can you explain these in lamens terms for me.  I have always wanted to meet someone who can make this clear for me.  Are you ok at this time?  Also I am a bit concerned about the Cushing's tumor being fatal.  Did they remove that?  How are you doing from that?  I hope you're ok.  My Blessings to you. I will keep you in my prayers.

[Lsuarez777]

I actually don't know what was administered but I do know that my adrenal gland was shut down.  I had no reaction to anything around me but did not think there was anything wrong since I was not looking for any symptoms.  I am ok from that now for a few years. I think it was just because it was at the begining of all of this and my Thyroid was off so other glands were just reacting to that.  

As of today I feel great.  I do have aches and pains but I am grateful that we have professionals to help us.  I just like to read about others in my situation because then I don't feel so alone.  

Last night I don't know what happened but for a second I lost it.  It was something dumb.  I was washing the dishes and I kept dropping the spoons, knife, can opener and then I just let out a scream and threw the can opener on the floor.  I took a deep breath and felt better.  I told my husband I was ok.  I just felt so much locked inside that I needed to do that.  You see, I had a very bad fall last march and in July I had a very intense repair on my rotator cuff and I have not recovered yet.  This limits my grip and movements along with being hypothyroid right now which makes me emotional I lost it.  I pose no danger to me or my husband I just needed to cry a bit and I did.  

Do you ever have times where you just feel sad and tired?  Times you hope this had never happened to you?  I use to be so full of energy and in my mind I still am.  I just get so tired and can't seem to do everything I use to.  

[rumpled]

You have a lot on your plate.
I had my adenoma discoved after I was lactating, but my doctors told me for years that my problem was just thyroid and the tumor was just incidental. I could never stay very stable in my thyroid meds however and I just kept getting sicker, and getting other things as my immune system was weak.
In the end, my pituitary tumor was a significant component of my health as I had two tumors, one was Cushing's, which can be fatal, and the other a prolactinoma, which is why I was lactating that one time.

I also have hashimotos, thyroid nodules, various female issues (fibroids, PCOS, cysts, adenomysis, etc), fibromyalgia and a neuro-muscular disease that has not been diagnosed yet. I understand your pain even though mine is different.

When you were in the hospital, usually it is for IV steroids, not adrenaline, for the adrenals. Sounds like you had an adrenal crisis. I would get your records on that. Adrenaline is given for severe allergies (i.e anaphalactic shock). Was that the case? Have you had your cortisol tested since?

[Lsuarez777]

Yes, I had a catscan back in 1987 which is when they discovered the 5mm right side adenoma.  After that initial catscan I had a series of blood tests and an MRI.  It went on from there.  In my case the adenoma was secondary to a non-functioning (hypo) thyroid. At that time my adrenal gland was shut down too and they took care of that by injecting me with something through IV.  I had to stay a couple of hours at the hospital that day to make sure the adrenaline kicked in.  Honestly, the adenoma doesn't bother me at all because I am very confident that it is secondary to the thyroid problem.  Right now my thyroids are out of wack but the doctor is working on getting me on the dosage of Synthroid.  Once that is ok everything is ok.  Thank you for your concerns and well wishes.  I hope everything goes smoothly for you too.  I do suffer from pain on a daily basis but that is not due to this medical problem.  I have Lupus and Sjrogen and life can be uncomfortable...LOL...

When asked by co-workers "Good morning, How are you?"
I respond "Good morning, I got up this morning so I am blessed. How are you?"

This is so true to the word: Many people cannot walk, talk move or anything like that so I feel blessed.  

Have a wonderful week... ttyl

[rumpled]

Sarah,
What your doctors are saying to you are what my doctors said to me. That it is just the presence of a tumor and the pressure on a spot that would cause a particular hormone to elevate. My surgeon told me the same. It can happen from car accidents, for example, if scar tissue forms, as well.

I ended up though, having a secreting tumor when it was confirmed by pathology even though most of the time my tests were normal.

You actually do/did have a lot of symptoms. I am glad you are better. Did you have to stay on the dostinex?

[SarahB79]

I think mine is classified as non functioning.  I did have high levels of prolactin, but they weren't so high as though it appeared that the tumor itself was secreting the hormone.  They said this is common to have it elevated just by it's presence disturbing the gland and it's nature production of hormones.

That said my symptoms when the tumor was untreated were...

headache
visual disturbances (very mild)
eye sight change in perscription (very drastic)
nausea
dizziness
weight gain (later to be discovered it is Hashimotos Thyroid)
diabetes type 2 (thirst, high blood sugar, increased urination)
high blood pressure
lactation
irregular periods
missed ovulation
middle of the night extreme nausea

Some of these things have lessened or gone away since the induction of dostinex to return prolactin to normal levels.  

[rumpled]

Yes, prolactin can be elevated by thyroid abnormalities, medications or a pituitary tumor.

Are you sure you had a CT scan? What size is your tumor? Do you get scans on a regular basis?

I also am hypothyroid, had high testosterone and was fully lactating out of both breasts. I was given an MRI (with and without contrast) and parlodel to reduce the prolactin.  Usually prolactin tumors are not operated on as they can be controlled with medication.

In the case of no tumor, and the cause is just thyroid, usually the thyroid is treated, but usually if the pituitary is the issue, the pituitary is treated. However, one can have more than one hormonal problem. That is pretty common.

I am glad though that taking thyroid controlled both your thyroid issue and your prolactin.

[Lsuarez777]

Hi, I have had a pituitary adenoma for 22years now.  Mine was discovered as a result of lactating (milk producing) breasts.  My Prolactin level was high and so was my testestorone which it should not because I am a woman.  Needless to say my PCP send me for a catscan based on my Prolactin and testestorone levels.  It was found that I had an adenoma which was later called a prolactinoma by the neurosurgeon.  The Neurosurgeon did not feel it necessary to operate because he thought it might be an endocrine problem.  Sure enough bloodwork revealed a hypo thyroid.  In lamen terms my Thyroid gland was not functioning (not producing hormones).  The endo doctor placed me on Synthroid and things began to change.  My skin was much nicer (it was dry) my mood swings disappeared and my energy level went up, no more nose bleeds and headaches and my breast dried out (stopped producing milk).  I have been on synthroid since and monitored by the endo doctors.  See this is what basically happened:

The Thyroid gland stopped producing Thyroxine
The Pituitary (which is master gland) was trying to make the Thyroid work
in doing sow it produced the adenoma because it kept secreting more and more Tsh to help the Thyroid function properly.  

When the docs gave me Synthroid (replacing the missing hormones) the Pituitary stopped working so hard (producing tsh) and everything is working normally.  

Now the tumor sits in the Pituitary but it will not affect anything unless it grows out and into the areas closest to the eye nerves.  This will not happen because my Thyroid is under control.  Do you follow all of this?  This is about the simplest way I can explain it.  

Have a Neurosurgeon check you out and an endocrinologist as well.

Don't be afraid; just take control and let the doctors know you need answers and help.

You will be fine.

  

Good luck and keep me posted.

[rumpled]

A non-functioning, non-secreting adenoma is only headache and visual distubance when it gets large.

Otherwise, when it gets large, it puts pressure on the pituitary, and the symptoms then can become the same as hypopituitary. I thought I posted a list but it is gone.

24 hour urine tests are used for cortisol (and calcium and pheos... ), There are a lot of tests to do - and for your doctor to say that your pituitary is non-secreting, he should have tested all the pituitary hormones - IGF-1, LH, FSH, TSH, ACTH, ADH, PRL. In addition, a good doctor is going to test other things - after all the pituitary sends signals and the other glands respond - so they should test for the responses - cortisol (urine and blood and saliva), free T3, free T4, estrodial, bioavailable testosterone, DHEA sulfate, renin, aldosterone,...
Then check additional things like vitamin D, calcium, sodium, potassium, ferratin...
Also check for things that may add knowledge - thyroid antibodies, SED rate, ANA, CRP, cortisol binding globulin, CPK, ...

I don't know if I got everything - but that is just off the top of my head. My better docs run almost all of those quarterly.