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Hey there everyone. I've been debating posting on here for some time, only silently reading, but I decided that my story may not only help someone else in the future who is in a similar situation, but it may also help to show a different side of story, particularly since I'm a physician.
About me, before Diagnosis
26, Latin, 6'0, 208 lbs. 3rd year Internal Medicine Resident. Married to another resident. Calm, mild mannered, ambitious but cautious, affable, and hard working. As a resident I can tell you it's quite funny, most of us never go to the doctor. We self diagnose and write each other scripts.
I moved here from another country, and when I was younger I had an episode of balanitis. When I saw a pediatric urologist, he noted that I had unilateral cryptorchidism and asked about it. I had been seen by doctors in my country of origin before, but they just said to watch it. Now a pre-teen, the urologist was concerned about the potential for cancer and so I underwent both circumcision and unilateral orchiectomy.
Over the years I felt a little different, not as aggressive but still competitive, not so NUTS about girls but hell yeah I was into them, but I thought I was just more "chill." When I worked out, I just stayed chubby and may just grew in all directions.
I started college, and medical school, very young. Medical school and residency are brutal by most definitions, taking up 80-100% of the 168 hours in a week. I sometimes didn't even realize there was that many.
So I had gone during college/medical school to get checked for thyroid and testosterone tests. At this time I'm around 16-24. Everything was "normal." I had some results pulled back from then since I moved.
Testosterone at about 18: 428 ng/dl
Testosterone at about 20: 394 ng/dl
Diagnosis
I noticed my energy levels were really crap, even when sleeping enough (well, 6 hours average on a light rotation). I hadn't gotten testosterone labs for 6 years, but I still always worried since I'm running aorund with a lone ranger. So I decide to run my own labs since well, I work at a hospital.
Total Testosterone: 304 ng/dl
Free T: 58.4 pg/ml
Thyroid panel is normal
So I go another 9 months before having repeat labs. But it is during this time that I also note that my libido is decreasing. Now like I mentioned before, I'm chill, mild mannered, and at this time newlyweed. Now I had had my issues with erectile dysfunction before early in the relationship, but she helped me out, was supportive, and I also started to take small doses of sildenafil (Viagra) sublingually (I'd bite a small piece about 10-20mg, let it sit under my tongue and dissolve completely).
This was ok because my libido was (for me) still good at that time, but now it was like I just didn't care to. And my wife is hot. So I knew something was wrong.
And here's where the "doctor" insight comes in and I can tell you guys the truth: we know very little. But about the wide and complex system that is the human body. So I rely on the lab telling me what's normal for things I don't see often and just know the ranges for, like in my case, testosterone.
So I started to do a little more reading and finally realized: I'm an otherwise healthy 26 year old male. A testosterone of 304 is absolutely not normal.
So I did what any good doctor would do: I repeated it. But first I made some lifestyle modifications, exercised more and ate better (specially good nuts like pistachios/cashews). And this time I made sure to go nice and early in the day.
Repeat total testosterone 9 months later: 280 ng/dl
Repeat free T: 46.5 pg/ml
So at this point I realize that even me trying, this is only getting worse. So more medical literature reading later, I do my own work up, thinking this may just a function of having a lone ranger (medical literature states it should be up to par, but you never know).
A week later:
Vitamin B 12, Vitamin D, folate, prolactin, repeat thyroid panel all normal.
FSH: 3.0 mIU/ml
LH: 3.7 mIU/ml
Estradiol: 28.8 pg/ml
DHEA: 625 mcg/dl
Sex hormone binding globulin: 46.5 pg/ml
At this point I decide I should escalate and go to an endocrinologist. I can definitely tell that, given these results, my central nervous system is not up-signaling my remaining testis like it should. This isn't just a cryptorchidism problem.
The First Failed Doctors Visit
I see a nice endocrinologist right away. I give him the whole work up, present my case (he is, after all, an attending and I'm just a resident). I had obviously been reading, including some on here, and realize that since I am still very young and hadn't had children yet, HCG seems to be my best option. He states he doesn't do HCG, but offers to write me some testosterone gel right there and then. "But if we add exogenous testosterone my spermatogenesis will decrease, and like I said doc, my wife and I are planning to start before we finish residency. How would this help?" I feel your pain guys, this doctor was useless. Well, at least he ordered me a pituitary MRI which was negative. That script I did take.
The Doc Who Tried his Best
I did more research now in the field of "men's health," which in the world of medicine means I looked for urologists. See, unfortunately medicine is a very rigid, calculated field which is why most of us know very little, and care less, about things like herbs or this "new age, hippie health stuff." It's how we're taught, and has it's pros and cons, but it's why we stopped blood letting and at least now life expectancious are up.
I found a urologist but the office staff couldn't give me an answer as to whether he worked with HCG. I see him anyway, long story short of course he doesn't but offers me clomid 25mg PO QOD. He states it has helped some of his patients in similar situations. I decide to give it a try.
1 month with clomid:
TotalTestosterone: 602 ng/dl
Free testosterone: 115.6 pg/ml
Estradiol: 41 pg/ml
IG1 ie human growth factor work up and cortisol all normal
Although my numbers look much better, I don't feel much better. My energy may have somewhat improved, but not much. I gained 6 lbs now 214. My libido though? Still trash. Erectile dysfunction when attempted. I go back and tell him but he states I should really try for a full 3 months. I read again on my own and call myself in 1mg arimidex and start taking 0.3mg with the clomid during the last month.
3 months with clomid:
Total testosterone: 547 ng/dl
Free testosterone: 96.3 pg/ml
The lab messed up the estradiol
I go back and tell him I can't do it anymore. Now I'm up 14 lbs total, to 222lbs. I'm snappy, getting into fights with my wife, and bloated. This must be what it's like being on your period. He refers me to someone I think he googled in the back, and the next appointment is in 3 months. I decide to say screw this reverse hunt down a doctor that knows what HCG is, like I saw on here.
Called a local compounding pharmacy and asked for names near me. They tell me a doctor, I look him up, and turns out he's in the top 5% of HCG prescribers. I don't know if this means he knows what he's doing, but at least he knows how to prescribe it.
Finally a Knowledgeable Doctor
I finally get to this appointment, tired, weeks without the clomid, weight still elevated, libido stil trash, but at least I'm not feeling like crap and getting into fights with my wife. I'm back to my baseline chill. I tell him the story above and he is baffled. He starts me on HCG at 500IU Mon/Wed/Fri and adds arimidex 1/3mg with the HCG.
1 month with HCG and arimidex:
Total testosterone: 584 ng/dl
Free testosterone: 96.3 pg/ml
Estradiol 15.5 pg/ml
I feel better, not amazing but better. Energy improving, weight is the same, libido maybe a bit better, not such bad erectile dysfunction.
3 months with HCG and arimidex:
Total T: 520 ng/dl
Free T: 113.9 pg/ml
Estradiol: 25.4 pg/ml
At this time I bring back the thought I shared with him from the beginning: I think I'm going to end up needing dual therapy. My symptoms improved let's say about 50% at first, then plateaud at 33%. Yeah it's better, but it's not 100% still. I'm 27 now, I should be destroying my wife, but at least I'm better.
I'm now in my first week of testosterone cypionate 200mg/ml at 0.2ml Mon/Wed/Fri with the same HCG 500IU and a 1/3mg of arimidex. I already feel much better after 4 shots, which given the half life of cypionate makes sense since I'm likely starting to get to a steady range.
From beggining of symptoms Mid 2016, to finally getting the diagnosis mid 2017, to finally getting the right and full treatment early 2018. Diagnosis took approximately 9 months and treatment 6-7 months.
I lived through the struggles I read about you guys having on here, which at first I thought was exagerration.
We doctors know a whole lot, but there's often more we don't know. Unfortunately.
My problem personally is actually two: I have primary hypogonadtropic hypogonadism. This is evident by low normal FSH and LH despite low testosterone. Work up thus far is negative, so it's primary.
Clomid didn't raise my FSH and LH levels at all actually, but clomid is a separate conversation. HCG by itself, acting as an LH receptor agonist, helps fix the central issue but runs into another: my cryptorchidism.
So basically if I had an perfect pituitary I'd be pumping out FSH and LH and making my lone ranger the huge ranger which could theoretically produce enough testosterone on it's own. But my pituitary sucks. Also, if I had two working testes maybe HCG would work, but again, no cigar.
I see why women undergoing in vitro are always so moody. Clomid is the worst.
Injecting testosterone sucks, it's super slow. I was using 29g needles at first that came with my HCG, I switched to 25g on 3ml synringes. Much better.
Sildenafil or viagra works great sublingually at smaller doses.
Finally, I hope that this one day may help someone in my position. And that maybe one day, I'll be able to help some of you guys.
DrTRT
