Clomid increased but Testosterone is dropping...what next???

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Anne Marie

New Member
My son has primary pituitary and primary thyroid issues. He just turned 20. He is now on growth hormone injections, clomid, anastrozole, levoxyl, vit D, vit B12 and iron. He just tested deficient in oxytocin so he will start on that soon too. He has a team of doctors that includes Dr. Saya from Defy.


Before treatment March 2017:
Testosterone 144
Estrogen Sensitive 25.9
LH 5.4 (range 1.7-8.6)

He is a cpy450 2d6 poor metabolizer so Dr Saya wanted to keep the clomid dose low (it uses that pathway fro metabolism)

He began 12.5 mg of clomid EOD and 0.2mg of anastrozole EOD.
In May he felt MUCH better:
Testosterone 666
Estrodiol 41 (range 8-43)
LH 17.4 H (range 1.7-8.6)

In late July Dr Saya wanted to see what what happen if clomid was lowered, so he started a wean. He was then on 7.5mg of clomid EOD and 0.3mg of anastrozole EOD. Within two weeks of the lower dose my son felt a drop and began struggling to get work done.

Sept labs:
Testosterone 493
Estrodiol 72 (range 8-43)

Our endo moved him back up to 12.5mg clomid EOD with 0.3mg of anastrozole EOD BUT TESTOSTERONE DROPPED LOWER after moving back up to the starting dose.

Oct labs:
Testosterone 449
Estrogen Sensitive 24.4 (range 8-35)

We see our endo next week and Dr. Saya the following week. My son doesn't complain much but he felt much, much better when his T was in the 600s. His big issue is lack of drive. We thought that increasing the clomid would bring the T levels back up but instead they fell more. We are concerned about going too high with a clomid dose given him 2d6 issue. His serum cortisol has been running a bit high on clomid as is.

Do we play around with clomid some more or try a different approach for his low T?

Thanks!
 
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CoastWatcher

Moderator
I'm sorry your son continues to be frustrated in his efforts to balance the multiple health challenges he faces. The recent increase in both Clomid and anastrozole...no SUBJECTIVE improvement reported by your son?
 

meanbreen

Member
I am not knowledgeable regarding the 2d6 issue, but I can offer my own Clomid experience.

At age 22, tested for low T (~200). Deemed to be secondary. Normal prolactin/no tumor found on pituitary. I was put on Clomid (12.5mg QOD). I was on it for a total of 3.5 years. I can not say when nor how many dose increases I had, but I eventually worked my way up to 75mg daily at the end. I felt good for the first couple years and then started to decline rapidly for the remainder of my trial. I presume that as I got to higher doses, more side effects started to kick in. I had a paradoxical effect of sudden GH deficiency around the 2.5 year marker (low IGF-1 then confirmed with GH stimulation test). I have a feeling that Clomid's effects on the pituitary aren't cut and dry (does more than just raise LH). I began TRT in March of this year and feeling much better. I no longer have a GH deficiency and have oddly enough high IGF-1.

Point of my story I guess is that you have to keep raising your dose of Clomid to get the same effects, but when you do you start running into unforeseen side effects. IMO it is not a viable long term solution. Have him freeze sperm and get onto TRT instead of delaying the inevitable. That wasn't meant to be blunt. Good luck.
 

Anne Marie

New Member
When his dose increased from 7.5mg EOD back to 12.5mg EOD he happened to have one more 7.5mg capsule left. I had him take that on an "off" day so for a three day period he took 12.5, then 7.5, then 12.5 and continued on with the 12.5 EOD. Right after this three day period he felt better and talked about the improvement. But it didn't last long. He started napping more and once again he had no drive to get work done. Clearly the estrogen has improved but the T has gotten worse. Of all the hormones he is replacing and treating, testosterone seems to have the biggest effect. At least he notices it the most.

We are rather certain that he never had a full puberty and T levels never increased much during adolescences. We just didn't know that and a pediatric endo never tested him even though his puberty was delayed.

When is T jumped from 144 to 666 he felt a big difference in his life. He's definitely not doing great at 449. We were actually somewhat relieved to see this lower number after re-upping the clomid. We had just assumed that his T would rise again and we couldn't figure out why he wasn't improving (napping less, getting work done...).
 

Will Brink

Member
Do we play around with clomid some more or try a different approach for his low T?

Thanks!

It also sounds like possibly too many cooks in the kitchen there. Personally, I'd probably give Dr. Saya the opportunity and time to see if he can get your son squared away. Asking advice here, while perfectly understandable, may lead to more conflicting information and confusion for you. At the very least, have Dr. Saya and the endo communicating as a team to find the best approach for your son and being between conflicting medical opinions can be problematic to say the least.

Will @ www.BrinkZone.com
 

Anne Marie

New Member
The recent increase in both Clomid and anastrozole...no SUBJECTIVE improvement reported by your son?

Actually I just checked with my son again. He said there is definite improvement in his agitation level. He no longer feels ready to explode like he did several weeks ago. Would that improvement be consistant with the his high estrogen levels coming down?

It's fatigue and lack of drive persist. They were much better when T was higher.

FYI, his hypogonadism, severe growth hormone deficiency and thryoid issues preceded all treatments. He was only taking vit D when all of that was tested (and retested) and diagnosised.

His local endo is our primary prescribing doctor, we are fortunate to have a very good one. We have flown my son across the countryg to see a pituitary specialist at his urging and we consult with Dr Saya for the hypogonadism issues. This local endo encouraged our team approach and reads all the notes and follows the council of the other two doctors. Everyone is on the same page.
 

user_joe

Member
You picked a leading doctor in this field. Probably aren't going to get better advice from this forum. You can get opinions and other peoples experience though. I'd listen to the doc.
 
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