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Old 03-14-2007, 08:09 PM   #1
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lowesclubmaker HB User
New member of the Low-T fraternity

This board has helped me learn so much - but there is so much more to know. Any thoughts/advice is much appreciated.

I started have weird symptoms in Mid-Nov including what I have seen referred to here as "internal shaking" and sometimes visual tremors. Muscle fatigue, general lethargy, lost 35 pounds, other signs of depression. Treatment with Anti-depressants have helped with the emotional side, but physical aspects have drastically affected my quality of life and ability to do my job.

Shortly after the onset of this I also started experiencing nasty pain in left testicle.

Along the way I've lost all libido/erections (well, couple days in there, usually when the pain was better, but not many).

I think the last time I checked my insurance company's webpage, the gross cost of everything I've had done so far is over $35K (lots more than indicated here - thank goodness for insurance coverage). I've done acupuncture, chiro, even consulted some TMJ specialists - and let me tell you - that is a group of hucksters and charlatans.

GP and Urologist #1 said pain was epididymitis. Did some antibiotics and a scrotal sonogram (normal). Pain went away for several days, then came back. Now on a much longer course of antibiotics (pain has lessened but not gone away). Urologist #2 said he doesn't think it ever was epididymitis - the pain is located in the testicle, not in the epididymitis. His next diagnostic step would be to inject a nerve block (ouch!) and see what happens with the pain. However, as the pain has lessened, it doesn't make sense to do that right now.

While working with Neurologist, I had an MRI that found a pituitary micro-adenoma. I saw a local neurosurgeon who didn't feel it was surgical, but ordered some bloodwork (below), a vision field test (normal) and a pituitary-specific MRI (no change - still there, not impacting the optic chiasm). Surgeon still feels we should just watch it.

Saw endocrinologist who felt I should persue surgical review at University of Virginia (fortunately, only about 2 hours away) as they have one of the best pituitary surgical centers in the world. He also ordered a bunch more bloodwork (below). I think his thought is that with the T levels so low, the LH/FSH numbers should be a lot higher, and that is indicating pituitary issues to him. I've sent off all my info to UVA and am waiting for their thoughts.

I basically pressured the Endo into giving me a script for the patch - hoping to at least get some relief from some of my symptoms and get on with my life while we figure out a longer term plan. He did a rectal check, and ordered a PSA test. I also asked him to test estrogen (which was submitted as total estrogen) as I have seen posts on other boards about guys who's E2 gets too high causing testicle pain that goes away when balance is better. Of course, I don't think I was quite up to speed on Estrogen vs Estradiol and should have been more specific on that.

Still waiting for those results, picked up the patches, but have decided to wait until I hear from UVA in case they need to run more tests which I don't want to mess up by having used the patches.

Bloodwork:
2/13 (ordered by neurologist)
----
Vit B12 571 (200-1100)
cortisol 19.3 (4.3 - 22.4)
prolactin 15.5 (2.0 - 18.0)
TSH 1.9 (.4-5.5)
Magnesium 1.9 (1.5 - 2.5)

2/19 (ordered by neurosurgeon)
----
Andrenocorticotropin 20 (7-50)
Cortisol 10.3 (4.3 -22.4)
T-Total 369 (241-827)
TSH 1.8 (.4-5.5)
Growth Hormone .2 (<10)


2/26 (ordered by endocrinologist)
----
LH 5.3 (1.5-9.3)
FSH 3.0 (1.6 - 8.0)
T-Free 20 (46-224)
T-BioAvail 44 (110 - 575)
T- Total 301 (250-1100)
SHBG 70 (8-46)
cortisol 17.6 (4.3 - 22.4)


So, with all that said:
- Any thoughts about a link between testicle pain and drop in Testosterone?
- If UVA says I am not surgical at this time, considering the bloodwork results below, what further tests need to be done to come up with a treatment plan?
- Can we guess What that plan is likely to be (or better said - what it SHOULD be?)

 
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Old 03-14-2007, 10:02 PM   #2
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hayfarmer HB User
Re: New member of the Low-T fraternity

Your SHBG is outrageously high which explains the low free T. Most T is bound to proteins with SHBG being the primary one so high SHBG will result in low free T. Free T is the T that is not bound to proteins and is the important and active T. You need to have the estradiol checked because high estrogen (estradiol is a very potent type of estrogen) will increase SHBG. High total estrogen or estradiol can also supress LH and hence supress total T. Your LH doesnt look that bad but obviously is not high enough or your total T would be higher. I have also heard UVA is world class for pituitary adenomas....best of luck with that.

Unfortunately I'm not sure what else can make SHBG so high besides the estrogen. The short of it is, your free T is way too low because your total T is slightly low and your SHBG is way too high. You need to get the free T up is my guess but exactly how is the problem.

Last edited by hayfarmer; 03-14-2007 at 10:03 PM.

 
Old 03-15-2007, 07:48 AM   #3
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lowesclubmaker HB User
Re: New member of the Low-T fraternity

Thanks for that. Does anyone know where I can find ANY information on the high estrogen/E2 and testicle pain that I can take to the endo?

Also, does anyone know of a good Dr for this stuff in the D.C. area? I'm not too worried about insurance, I just need to find the right doc.

 
Old 03-15-2007, 09:37 AM   #4
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rfish1966 HB User
Re: New member of the Low-T fraternity

Sounds like just about the same with me. Forgot my other numbers but mt total T was 286 with a cyst on my right testicle. All the symptoms of low T and at 30 years old.

 
Old 03-15-2007, 10:32 AM   #5
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MojoThai HB User
Re: New member of the Low-T fraternity

Sorry if I missed something, I just scaned your post... When I was first diagnosed with Low T I also had some pain in my left teste... not severe just uncomfortable...Also was sometimes slightly swollen, confirmed by GP, but as I started treatment for the Low T and later a pituatary adenoma it went away... I think that you should be concerned with your prolactin level.. becuase that was the root of my problem...remember that just becuase it is within the so called normal level does not mean that it is normal for you... prolactin has no known use in a man but is a serious libido killer... you may want to ask your doc to forget the patch and try a small dose of bromocriptine...it might be worth a try...at low doses I doubt you would exp any side effects... becuase believe me if you start HRT and it works even a little you will be reluctant to stop... if you can find the root of your low T it is better off in the long run than just replacing hormones for the rest of your life... if you have read these posts, HRT is def not a perfect science... I have been on HRT for over a year and just was able to convince my doc to try going off... becuase again if you try HRT and it relieves your symptoms and you tell your doc...good luck getting him to do anything else for you... at least that was my exp..

good luck///

 
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