The Beginning

It began when I was about 58.  I had been depressed and I was not getting better.  I am a psychiatrist and I was meeting with my psychiatrist.   We were brainstorming and almost as an impulse I asked him to order a testosterone level.  In the back of my mind, I recalled that I had heard that low testosterone can be associated with depression.  We psychiatrists generally test for certain medical conditions when evaluating the onset of a depression – thyroid function, certain vitamin levels.  But we never routinely test for testosterone levels. Alas we generally know not much at all about that hormone. Finding a Testosterone Doctor

Low Testosterone Levels Confirmed

My levels came back insanely low!  Total testosterone was 65 ng/dl and free testosterone was 1.5 ng/ml.  To digress for a moment, this particular free testosterone test was the notorious LabCorp ‘”Free Testosterone – Direct” test where they have the right number for the result but the wrong units.  They enter pg/ml.  WRONG.  This error has caused a great amount of grief and confusion for patients and providers for years.  And, allegedly LabCorp has known about this problem for years. Corporate arrogance!  When I have spare time, I often try to identify LabCorp execs and email them about this problem. There had been no response until quite recently.  One VP said he’d read over my data and would be showing it to someone else and would be getting back to me. Stay tuned! Finding a Testosterone Doctor

A point worth mentioning, despite my very low levels I didn’t have the collection of symptoms that many others with low testosterone have.  There was no brain fog, no lethargy, no loss of libido, no sexual issues nor loss of libido. My depressed mood, though, may be due to the low testosterone, at least in part. I still do not know.

The Endocrinologist

Off to see the endocrinologist!  She did a work-up which included an MRI of the pituitary.   The MRI showed a 3mm lesion attached to the stalk of the pituitary.  The neuroradiologist determined it was benign.  “Repeat in 6 months.” The rest of the work up was unremarkable. The prevailing theory at the time was that my medications: various antidepressants and Lipitor, were causing the low testosterone.

Androgel

The recommended treatment? It seems to be a rite of passage for many of us: Androgel! A clear gel that comes out of a little ketchup packet thing.

I should explain that my journey as a TRT patient who happens to be a physician can be broken up into two phases.  This was the first phase – the doctors always know best phase. Why wouldn’t I assume that most endocrinologists and urologists knew everything that would need to be known about treating low testosterone?

So, I waited 6 weeks for a blood level on the gel. As I’ve subsequently learned, this was quite unnecessary as the half-life of testosterone once the substance crosses the skin and gets into the blood is a mere 5 hours. One need only wait a day or two to get a meaningful blood level.

After the 6 weeks the testosterone level was higher. Barely in the normal range.  But higher nevertheless.  So, we continued with the gel.  But no increase in the dose or potency. There should have been! Again, this was my naïve patient phase so I went along with it. The next blood levels?  Back to my crazy low initial levels.

The endocrinologist threw up her hands in defeat. “Go see a urologist to get injections.” She gave me a referral but the location was inconvenient.  So, I Googled “urologist” and “injection.”  A nice site for a urologist offering something call “pellets” emerged prominently. I spoke to him. “This is the best thing ever … You’ll feel like new… You come in every 4 months or 6 months… no problem….” He also mentioned that my initial testosterone levels must have been lab errors. “I never saw levels that low – maybe they switched it accidentally with a woman’s blood!”

Pellets

For the first time I did a little research.  Pellets were approved by the FDA! Ok, an official stamp of approval. I went to the appointment.   It was a gorgeous office: fish tanks, wood paneling.  You get the picture. There was a big sign:  “Anti-aging & Aesthetic Medicine.”  Ok. Not your average urologist. But his board certification reassured me.

The pellet procedure was fine. I don’t mind procedures. And I didn’t mind the pellets in my butt.

A couple of weeks later I got the blood levels. Of course, they were sky high (for me anyway.) Total testosterone was about 1200ng/dl.  Free testosterone was about 30ng/dl.   I felt no different, physically or mentally, by the way while at this peak level.

I waited out the 6 months and felt ok.  My depression had lifted. My psychiatrist seemed to have come up with a magic combo of med.  Then Covid happened. The pandemic distracted me from matters testosterone.

Eventually I had a routine appointment with my primary care Dr. She ordered the testosterone levels. Back to those crazy low levels again. “You should get this evaluated.”

It was gradually dawning upon me that it might be a good thing to be a little bit more of an educated consumer. No more passive follower of the party line.

Pituitary Lesion

I took some initiative and spoke to an endocrinologist friend at work.  She urged me to take a deeper look at that pituitary lesion.  She referred me to a neurosurgeon who specializes in the pituitary gland. He would look over my MRI.

By this time most private practice providers in New York City had discovered to keep their patient flow during the height of Covid.   So I made an appointment with the neurosurgeon.  I redid the pituitary MRI. We had the video appointment.  There was no change in the lesion.  He was certain that this little growth had no impact whatsoever on my testosterone. And even if it had, there would be no surgical intervention as it was so small. Finding a Testosterone Doctor

Androderm

For treatment he referred me to his colleague, a neuroendocrinologist.  She recommended Androderm, the testosterone patch.  I am not sure why I went along with this.  I should have thought this through and concluded that if the gel didn’t work, why would the patch work? Both are transdermal testosterone delivery systems.

Surprise surprise. I was one of the 50% of Androderm patients who get a skin reaction! It was pretty pretty bad.  Daily red blotches that were itchy and painful. It looked like a hardball was being hurled at my body at a very close distance every morning.  Putting on a topical steroid was recommended.  Right.  The patch was not going to slide off?  But I suffered on, waiting the 6-8 weeks until the blood levels. And again, no reasonable need to wait that long to check the levels.

It was during this period of suffering, this self-inflicted plague of the red blotches, that I crossed over… I got smartened up!  It happened because I had recently gotten into listening to podcasts.  Politics, real crime, professional wrestling. Yes… professional wrestling.

Stumbling Upon a Testosterone Podcast

On an impulse I did a search on the word “testosterone” And basically one came up.  It was entitled “ALL THINGS TESTOSTERONE- THE TRT COMMUNITY.”  Community? Why a “community?” What’s that about?  Very kumbaya.

I began listening…. and I quickly got the picture!  I saw the light!  So, I was not the only one who went through all of these wasteful, scientifically unsound, and sometimes expensive treatments.  I learned that maybe 99% of the providers who should be doing a good job treating low levels of this essential male hormone, 99% of the endocrinologists and urologists, didn’t know what the hell they were doing!  I learned that the lab ranges that defined who is “ill” and who is “normal” and who would qualify for insurance were arbitrary and silly!  And I discovered that because of the problems I just mentioned there was a massive alternative cash-based treatment infrastructure, the TeleTRT clinics.  This has no equivalent anywhere else in medicine!  Are there Irritable Bowel Syndrome Clinics blanketing the state of Florida?

I learned about the Facebook and Reddit groups, including the one with the most members, the one associated with this podcast.  I joined the non-Facebook ExCel Male forum, binged on the instructional YouTube videos and I was immersed.

I discovered that the best treatment of all, self-injection of testosterone cypionate or enthanate, had not yet been offered to me.  How could this be? Because those testosterone formulations have been generic for decades and there was no profit in those for the drug companies.  And I learned that the alternative best treatment – high concentration scrotal cream (20-30%) could only be obtained through another alternative system not well-known around New York City, the compounding pharmacies.

I learned about the controversies:  IM vs SubQ?   How to handle elevated hematocrit. Are frequent blood donations needed or not? And on yes, the mother of all TRT controversies – Aromatase Inhibitors? Yes or No?  That near-religious debate had led to the banishment of many a man from one or the other of the rival Facebook groups.

I was struck by the fact that, for the most part, important treatment questions were not being answered by mainstream Urology and Endocrinology. Rather it was being done in the trenches, by the patients with their different experiences, discussions, and arguments in the forums. What encouraged me was that much of the debate boiled down to evidence.  Is there a paper reflecting what you are saying? Evidence based treatment!  That is a very good thing. Older overlooked papers were being dusted off and being put into the context of what my fellow fellows were trying to figure out.

HCG

And then I got pulled into the HCG shortage panic.   I didn’t want my balls to shrink so I had to get my hands on HCG.   That led to my first experience with a TeleTRT clinic. I learned directly that some of the real expert clinicians were in fact not really clinicians, in the legal sense anyway.

Despite my excellent impression of a couple of the TRT clinics I didn’t want to go that route.  It was a matter of principle.   I pay a lot for health insurance.  If all is fair and just in the world, I should be able to find in my big city, with its 100s of insurance-based urologists and endocrinologists, the 1 % who were up to date in their TRT knowledge.  The search began.  I used Zocdoc, a great service, to look for providers who listed “Low Testosterone Treatment” as one of their areas of practice.  I lined up a bunch of appointments, interviews really, in the weeks ahead for the $35 copay a pop.   All via video.

But in the interim it was back to my neuroendocrinologist with my newly born activism, attitude, and knowledge. I asked her about HCG even though I was already taking it.  “No… there are no studies.”  I asked why hadn’t she ordered an SHBG level?  “No… not necessary.. it contributes nothing.”

She mentioned that if not for my skin reaction her next step would have been to use 2 patches a day!

But the real question of the day was if she was going to prescribe an injectable or not?

And she said she would!  I was off to the races! The precious steroid from the androstane class containing keto and hydroxyl groups would be flowing directly and effectively into my body by my own hand.

That the most she would offer up was a measly 80mg a week was disappointing but it wasn’t the biggest deal as I knew that I would soon be moving on.

Finding a Testosterone Doctor

The series of video interviews soon commenced.  I was surprised to get an appointment with a highly credentialed endocrinologist who listed TRT as an area of practice. And despite his high position he was a fine clinician with great interpersonal skills.  But what was his treatment plan? “We will start with an injection every two weeks.  But before I write a prescription, I would like to see you in the office.  I need to measure the size of your testicles.”

Next was a urologist.  Again, a fine clinician generally.  Great ratings.  But all he wanted to talk about was Aveed. “You come into the office 5 times a year for the injection. That’s all there is to it.”  I asked him about the issue of half-life versus frequency of dosing, the problematic peaks and troughs, what about that?  “Uhh….They worked out those kinks.”

Another urologist who highlighted TRT on his website said “Continue with the 80mg.”

The next urologist was a bit better “I would have started at 100mg…. but for now stick with 80mg.”

While I had lined up my ZocDoc team I also was working the back channels a bit. I did try what Brandon of the TRT Community had recommended, contacting compounding pharmacies and asking them about any local big prescribers of testosterones. But again New York City is not big on compounding. One place did tell me, though, of one doctor who ordered a lot of their compounded testosterone products. It turned out that this big prescriber was a gynecologist.

One real hero in the field of testosterone treatment, one of those non-clinician clinicians, is Nelson Vergel.  He runs the ExCel Male site. His story is worth hearing.  He told  me about someone, a urologist, who might be the one insurance-taking MD in NYC who knows what he’s doing regarding TRT.  I made an appointment and the guy was quite good.  In fact, he was too good. He wanted me to immediately double my dose to 160mg a week before taking a blood level and was very pro-HCG and knew how to source it easily. He had the right view on the estrogen controversy.  There were some issues – by now I was a very demanding consumer.  He was a bit old school regarding blood transfusions and hematocrit.  Also, I had prepared a nice clinical summary of my case. I always do this.  Overall, though, he may be the one and only insurance-taking provider in my big city that knows his TRT.

However, a week or so prior I took a shot in the dark and called the office of a urologist in another state, another country actually.  Texas.  He had participated in a bunch of YouTube videos that were impressive because of his reliance on evidence.  And he was a TRT patient himself.  Even though he was in Texas his group took my insurance and best of all he was doing some telehealth.   And that’s my happy ending, so to speak.  I’m not going to give out his name because I don’t want him to get too busy because that would mean less time for me. I will say that he was recently labeled by a hater as “The Walmart of TRT.”

That’s my story, which is the story of treatment of male hypogonadism in the USA at this time.

Some Recommendations for Newbies

-Be patient. Invest time into learning about this chronic illness of yours.  Join and read the Facebook forums. There are essentially 4 of them. Join ExCel Male and read the content. And watch the scores of YouTube videos.

-Do speak to your local compounding pharmacies about high testosterone providers in your area. This will pay off in some locales.

-If, unlike me, you are not lazy and you go to gyms and work out, ask around there.  In between offers of deca and other “gear” you may learn about the good doctors.

-If you have insurance, go to “Zocdoc” and search for providers with the search words “Low Testosterone.” You may get lucky.

-If you don’t have insurance be prepared to go to a good TeleTRT clinic.  You’ll be spending no less than $150 to $200 a month cash money on average for meds (including HCG), labs, needles and quality treatment.  And this is monthly for life. It does suck. But realize that those of us with insurance are mostly paying more than that monthly.

-When you start quality TRT your mind and body will likely be taking a turn for the better. Why not take a look at your overall health? How is your nutrition, your weight, your activity level, your alcohol use? That sort of thing.

-If you are newly diagnosed with Low T don’t overlook an evaluation for the cause! I’ve seen many cases online where guys are rushed into treatment before baseline TSH, LH and prolactin levels can be checked.  Those tests might point to a cause of your low testosterone.  Starting on testosterone before getting those tests will minimize their clinical value.  And you may need to get an MRI of the pituitary, an expensive test.  In probably 90 -95% of the cases these evaluations for causality will turn up empty.  But on occasion a hormone producing lesion will turn up and the treatment will be totally different

-Do not fail to use “GoodRX” if you are buying testosterone locally! You will save a lot of money!

-Be proactive and get your medication and other supplies well in advance. You don’t want to caught short.  It’s always taken me many days between asking for a testosterone refill and getting it.  Refills are usually not primary on a provider’s to do list. And in every case my local pharmacy didn’t have it in stock. It takes them a few days to get it from the supplier.

 

–Bennett

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