has anyone been told the pituitary tumor is an incidentaloma

[North48]

I have been having all kinds of symptoms like -
Carpel tunnel, weight gain, fatigue, blurred vision, nipple discharge, muscle cramps, eye pain, missed periods
They finally did a MRI and found a 3x4mm pituitary tumor.  They checked all my hormones and they were all normal even the prolactin was at 20 in March 08 and in May 08 was down to 12.  The Dr said this was a incidentaloma and my symptoms are most likely "menopause".  I am 48 yrs.  Next week I will go for a MRI because it's been 6 months and they will recheck the hormones again.  My new symptoms to add to the list are headaches,loss of pubic hair (not all but 1/2 at least) sore neck, sinus drainage, dizzy.  Does any one else have these symptoms and been told it's an incidental?

[rumpled]

I was told my 5-6mm pituitary tumor on the left side was an incidentaloma in 1992. I was lactating fully out of both breasts, but oddly, my prolactin was only slighly elevated. Rather than take that as being odd, it was dismissed.

I progressively got sicker throughout the years. I was regularly told it was just a thyroid issue (I did have nodules, hashimoto's and am hypothyroid) yet that was very hard to regulate as well I had PCOS and endometriosis. I did not heal.

Finally, in 2004, at double my body weight, after diet pills, anti-depressants and acne pills all failing, I was diagnosed with Cushing's disease and a dynamic MRI found the second pituitary tumor on the right. That one was the prolactinoma. The one on the left was the Cushing's disease.

Nothing at all was incidental. Now, for not having been treated (but badly) for all those years, I am disabled and on SSDI. I have no more thyroid, ovaries, adrenals and half a pituitary. But 98% of the endocrinologists I saw felt I was just fine. Go figure.

[North48]

Were your cortisol test levels always high and what test did they run to find it? On my tests they did blood cortisol test and it came back a little elevated so they did a 24 hr test urine and that came back normal.  What other test should I ask for?

Thanks for your time

[rumpled]

My cortisol was up and down.  I was cyclical and that is part of the reason that is took so long to get diagnosed.
However, I did find out that in later testing with a better doctor that I was high at night and very low during the day so the 24 hour tests averaged out. But the 10 hour urine tests would be high as those would test only the urine from 10pm to 8am. Midnight salivary tests did better for me.
Have you had your DHEA sulfate tested, ferratin, vitamin D, and all your other hormones checked from thyroid to male/female  - all of them.
I had a lot of doctors dismiss me on normal tests even though some were abnormal even though if you looked at me, I was plainly and obviously sick - but they would tell me to come back in 6 months. I got so mad I would just say why - just to get sicker?

[North48]

6 months ago I had thyroid TSH, FT4, LH, FSH, Estradiol, IGF-1, prolactin, PM Cortisol, Free Cortisol urine, corticotropin (is this ACTH?) all came back in the normal range.  They did a 25-Hydroxy D total which showed a deficiency.  Ferritin was normal and so was Folate and Vitamin B12.

Now when I went back 2 weeks ago they did another MRI and that showed the tumor had not changed and the only hormone test that they did was prolactin and Vit. D, I only know this because of the bill I received I don't have the full report yet.

My question is do you think it is wise to wait 18 months to check my hormones again?  When I left, the dr said I didn't need to return for another year but that would make it 18 months before they would check the hormones.

I'm still lactating from both breasts and the answer they gave me was possible fibroids (spelling?) or my blood pressure meds have Spironolactone which has been documented to cause lactation in men.  So if I'm still lactating in 2 months I should call and they will change the blood pressure med and see if that will stop it.

Thanks for all your support

[AGHDman1]

I am so glad I have found this forum. I was beginning to think I was crazy. From a person who has had years of exposure to the healthcare field (I have been a pharmacist for 21 years) it has stunned me as a patient to see how many gaps in medical knowledge there are, especially in the area of endocrinology. I find it difficult to believe, in view of this,that a rational endocrinologist would completely rule out our microadenomas as being a cause for our hormonal symptoms when no other cause can be found.
Has anyone else been tested for growth hormone deficiency? I ask,not only because this is the area where my health and insurance problems are currently focused, but also because I find that the need for growth hormone in adults is poorly understood by many healthcare providers. My general practioner, urologist, and ENT(who actually does surgeries to open the sphenoid sinus for surgeons to remove pituitary tumors) were unaware how important growth hormone is for adults. My endocrinologist, the best in my area, also seems to be "feeling out" the proper way to evaluate me for this syndrome.
In view of this lack of understanding and the fact that growth hormone secretion is often the first pituitary function to be lost in hypopituitary states I encourage all of you that are in the same boat as me with our pituitary related symptoms to ask you endocrinologist to evaluate you for AGHD if they haven't already.Then, good luck getting you health insurance carrier to cover the expensive hormone!

[North48]

I had my IGF-1 test run 2 times 6 months ago and both were on the high end of the normal range.  I suspect that it may be if anything Acromagely.  But like you said GH is the first Pit. function to go and I have read that too.