Empty sella update

[tmckenzie]

Hello all. I mentioned on here a few weeks back that I had empty sella syndrome. I have been on trt for nearly three years with little benefit and no libido, no energy etc. I read a lot here and elsewhere about guys having the same issues. Let me urge you to have an MRI of the brain done. Especially if you are like me, diagnosed young. 32. But I had low levels that went untreated 10 years prior at 22. Empty sella is no laughing matter. I made an appt with an endo at the Cleveland Clinic. I did not like him at first because he said I was on too much testosterone. 180 mgs a week split into two shots a week. I argued him, he said my t levels would be off the charts, went on and on. I said lets let the blood work speak for itself. Level the day before my next shot was 600. He quit preaching about my test dose and moved on. And I found he is a good dr. We have in the past week determined that the missing pituitary gland has caused me to have Addison's and parathyroidism, I think he called it. Said my thyroid looked fine. I am waiting on levels. I was also found to be diabetic. He said it is a wonder I had not had an adrenal crisis and died. He put me on 40 mgs of hydrocortisone split up thought the day. I am already staring to feel better, metformin for diabetes as it did not warrant insulin yet. They are using it for more than diabetes he said, for cholesterol, weight loss etc. Either way, if you are young and on trt or if you are just diagnosed and not yet started trt, MAKE your dr find out the root cause. Do not just do like I unknowingly did and start trt without first having an MRI and anything thing else needed to find out why you have low t. I am thankful I started having migraines or my dr would have never done an MRI and I would still be walking around here sick and wondering why in hell is my trt not working. It will work now according to my dr. All of the other levels where keeping me messed up. And, I highly reccomend the Cleveland Clinic. I have no insurance and it cost me a small fortune, but I am on my way back to feeling better.. When I get my labs I will post them here for the benefit of the other members.

 

[cocarr]

I recently started T therapy and after being at this site I asked my Dr. if I should get an MRI given that I have extensive head trauma hx. I have twice been unconscious/unresponsive in an ER with one of those being a FFL and an extended ICU stay (20 some years ago).

He said he was not too worried about it since my thyroid numbers were all good and said that my thyroid, also controlled by the pituitary, would be off as well. I am curious as to your opinion on this situation given you seem to have done quite a bit of research on the matter. I felt very comfortable with his response and it made complete sense.

 

[tmckenzie]

Get an MRI now. There is way more to it than thyroid. The adrenal stuff is what scares me the most.. They want me to keep a cortisol shot in case I need it and I have to get a medical alert bracelet. That should look good for picking up chicks right? No, get yourself checked out. Head trauma is the number one cause my dr said. I had no head trauma. But, I did drink a pile of radium tainted water. My doctor feels like this caused my issue. It makes sense, I was fine before the water mishap. I think we need to raise awareness of the issues. The dr also mentioned other endocrine disrupters which were in the same water like benzene could have helped cause the situation. With so many young guys getting low t, I believe it is endocrine disruption causing it. I am not saying that is cases ess but, bottom line, get a full diagnoses before trt. I get pissed thinking about all of the time I have lost due to one simple test being overlooked. An MRI, he'll I took a nap while getting it. You would be best to get an MRI quick. I see that there are centers now that will do it without a referral. Cash price for an open MRI with focus on pit gland was four hundred bucks.

 

[Neil Olson]

Have you talked to your doc about growth hormone? I am currently taking it.

 

[Thomas Mckenzie]

he said I did not need it . igf was checked. was middle of the range. but I read that most people with low gh have normal igf levels. that another test must be done. I am goung to push it with him. I know if everything else is not working, why would my gh levels be fine? also, got tests results today. estradiol was 57. range of 0 to 60. it was estradiol 17 b. is this the right test? my libido with the cortisol replaced is raging. total t was 500. free was 246. high. had not been on arimidex for several weeks. had a date last night, she stayed, I do have my groove back. correct me but seems like if I have no high e side effects, and libido is up, no need for to treat for high levels, right? will post all tests if I can figure it out. neil, how is the gh helping you?

 

[Neil Olson]

he said I did not need it . igf was checked. was middle of the range. but I read that most people with low gh have normal igf levels. that another test must be done. I am goung to push it with him. I know if everything else is not working, why would my gh levels be fine? also, got tests results today. estradiol was 57. range of 0 to 60. it was estradiol 17 b. is this the right test? my libido with the cortisol replaced is raging. total t was 500. free was 246. high. had not been on arimidex for several weeks. had a date last night, she stayed, I do have my groove back. correct me but seems like if I have no high e side effects, and libido is up, no need for to treat for high levels, right? will post all tests if I can figure it out. neil, how is the gh helping you?

Of course he will tell you it is not needed. Most doctors are scared or not up to date on growth hormone. It has a lot of positive affects. Look up Magic Foundation they have tons of good info. Thing with IGF-1 you need to be off your testosterone replacement to get a good baseline. For example. Mine was a 75 on a scale of 75-317. I went off testosterone for 6 weeks and it dropped to less than 50. Crazy low. The next and most important is a stimulation test. Mine failed to stimulate at all. LOL. How can you have empty sella and not be low. Makes no sense, but I am not a doctor. Your low cortisol is also a clue. After all without a pituitary your adrenals are screwed as well. How is your Thyroid?

I am not in a position to comment on your estradiol levels as I am learning as well.

https://www.magicfoundation.org/www/docs/103/growth-hormone-deficiency-in-adults

This guy is a guru in the hormone stuff.
http://goodhormonehealth.com/

 

[tmckenzie]

I asked yesterday to be properly tested for gh levels, dr said igf was good. So no need. Well I have studied up enough to know it must be low. Like you said, if pituitary is not there, how is it my gh is normal? According to the dr my thyroid is fine range was like 0 to 5 on tsh. Mine was 1.3. Parathyroid is a problem though.

 

[Neil Olson]

It is not that your pituitary is not there. Just not how it should be. Like I said though. If you want your IGF-1 to go down go off your testosterone for 6 weeks. Another thing to do is tell your doc if you pass a stimulation test you will never bring it up again. As far as your thyroid are they only testing TSH? If so get a new doc.

 

[Vettester Chris]

You stated a diagnosis of "Addison's and Parathyroidism" ... Can you clarify this if it's "Hypo" or "Hyper" on the parathyroid? I presume this prompted your physician to look into your calcium level as well? Yes, please post labs when you get them.