I am a 34yr old man. I had signs of ED (Hypogonadism) and was found that I have low T (200). I got my testosterone checked four times in a year and it seems it fluctuates, from 80 to 380 (which is in the range).
Cortisol was fine, Prolactin was fine. IGF was very high (520). I got MRI done and they found 3mm Pituitary Tumor.
Do I really have a tumor? Can it be something else? Why is my testosterone fluctuating so much?
Now they called me at UVA for OGTT.
The only real symptoms I noticed besides ED was insomnia and peeing more often. My marriage is on the rocks due to ED. Please help !
Yes, MRI's are sensitive enough to pick up very small tumors in the pituitary gland. It is not unusual to have a tumor this size causing significant hormonal imbalances. When a pituitary adenoma exists, they secrete excess hormone, and essentially "crowd out" the cells producing other hormones. So you may have low FSH and LH, pituitary hormones that stimulate the testes to produce testosterone, low anti-diuretic hormone (vasopressin) making you pee a lot and be thirsty. The excess growth hormones will cause physical changes in your bones, appearance of face, make your hands, feet and head size increase over time. So this needs to be followed, treated and all hormones that are deficient supplemented. You are lucky to have a Dr. who pursued your symptoms and low T appropriately. The oral glucose tolerance test will help to confirm the excess GH/IGF and a medical explanation from the Dr about your ED problems to your wife should help the marital situation. This should be treatable, and I would encourage you to try to get her to come with you to appointments so she can see that the problem has been identified and should get better.
They usually don't recommend surgery for such tiny tumors. Yes, it appears it is secreting excess growth hormone. With testosterone supplementation, your ED may be corrected within a few weeks, but I'll defer to men who have actual experience with the timing of treatment. If you have actual hypogonadism, that should improve as well. (Different than ED). There may be a medical way to suppress the excess GH. I would ask your endo about that.
As I understand Testosterone injections are only temporary. I was thinking if I start taking medicines for curing the tumor (eg Bromophine) , how soon can it make my testosterone level normal.
One more thing, can long term use of antibiotics cause problems with vitamin absorption and result in Pituitary Tumor? I had been taking Ampicillin for many years which resulted in Vitamin deficiency and other problems, and I think that caused my tumor.
I don't think you can count on suppressing the growth hormone to increase your testosterone. I think replacing the testosterone directly with monthly injections or some other route is best. There are very complex relationships between the pituitary and other glands. What has your endocrinologist suggested? Oral administration daily may be an option as well. Usually the injection and oral administration works quickly within a few days. I think that is your best bet and certainly the quickest.
Ok finally I got to meet the new Endocrinologist and Neurologist. They did an OGTT test and results will be out tomorrow.
Surprisingly the doctors told me that my testosterone problem is not due to tumor since it keeps fluctuating (it has been fluctuating from 80 to 390, I think its very very low). They also dismissed my frequent urination and thirst problem and when I asked about doing an ADH test, they said its not a proper test. When I asked them about taking medication to cure my tumor, they said medicines are not good, we'll do surgery if necessary. They also said, don't go online and read stuff.
They saw the tumor on MRI slides and said its very very small but we'll do surgery after looking at OGTT test results.
This is so confusing. How can they dismiss the problems I have been having for more than two years without any explanation? Are medicines really bad?
Andy, good to hear back from you! It will be interesting to see the results of the oral GTT. Then you will have one more important piece of info. How did you feel about the endo and neurosurgeon? Pituitary surgery is something I would want to have a second opinion on, from someone who takes care of pituitary adenomas frequently. Could you get a second opinion perhaps through the endocrinology department at a university setting? They are usually very well versed in the options available and may have other options to offer you. I would also want an explanation regarding the frequent urination and thirst, whether that is related to the IGF or not. Other tests can be done for diabetes insipidus besides direct measurement of ADH. It is important to tell them how much you are peeing each day. I think you said about 6 liters, which is huge! Normal is 1- 1 1/2 L/day. At least you are well on your way to having the problem identified and treatment should follow soon.
Thanks for the quick response. The Doctor called me today and said my GH levels were normal from the OGTT test. IGF results are still not out.
The doc said if my GH is normal but IGF is high, then I need to go for another MRI with 3 Tesla magnets, higher resolution. I don't know how that's gonna help one way or the other.
About my testosterone, the doc said that free Testosterone are normal but total is low. He didn't give the exact numbers but I should get the complete report in mail soon. I read that the true test of Testosterone is by measuring Bio-T & Free T and not total testosterone. The problem is, knowing all this still doesnt help my libido so I don't know whats wrong with me.
Also my urinating after drinking water problem is still there and they seem to dismiss it.
Andy, there is still the possibility you have a tiny adenoma in pituitary. Sometimes they are only 2-3 mm size. The other possibility is hypopituitarism, where some of the pituitary hormones are deficient, sometimes related to an autoimmune process. I would do several things to get them to check the water balance. First, for 24 hrs, measure all your liquid intake and urine output. Just keep a running list in your kitchen and bathroom. Start the test with an empty bladder, note the time, and measure everytime you urinate for 24 hrs., including the last time at the same time you started the test the day before, like 8 AM thru 8 AM. If your ouput is more than 2 liters, they should do a serum and urine osmolality test to see how concentrated your serum is, and dilute your urine. This test works for diabetes insipidus (lack of ADH from pituitary) making you not retain water like you should. If they can't get to the bottom of this, I would seriously consider Mayo clinic, Cleveland Clinic, etc. to get answers.
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The test I am suggesting is completely different than what you had. The volume of urine just needs measured, not saved for 24 hrs to give Drs an idea of how much urine you are producing. The osmolality test is a concentration test related to ADH production. Your libido and ED problems are result of low testosterone. You must supplement your testosterone to get any change with that. You can do that now, not wait until tumor is treated. Does your wife not understand these problems are related to a brain tumor that has thrown your hormones off balance? Testosterone will help the sexual problems, but perhaps there is more to it?
Even before seeing the 3 Tesla MRI results, the doctors called and said that they want to do surgery !!!
I am a bit apprehensive as my tumor is only 2mm-3mm. Its not affecting anything except IGF and Testosterone (which they say might not be coz of the tumor anyways).
Why can't I take IGF reducing medication and wait & watch?
What if I get the surgery done after one year?
What are the chances that the surgery will fix all the problems?
Should I go to John Hopkins or UVA for surgery?