My Low Testosterone Story


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(I just want to start by saying that I have posted this information on a couple other testosterone replacement therapy (TRT) forums, so you may have seen it before if you are active on other sites. I also want to reiterate what I wrote at the beginning: this is an extremely long post. I understand if you completely skip it because it's too much information. I do think, though, that there is a lot that can be learned from it. And I would appreciate anyone reading and commenting.)

I've been planning on writing this all out for a while now, so here it goes. Get cozy; it's a long one.

I began having strange symptoms at age 17. I started sleeping a bit more than I usually would. My mom recognized it was odd, though I thought nothing of it, and took me to the doctor who said it was probably just stress related. I thought he was wrong since actually at age 17 I was less stressed than I've ever been in my life, but whatever, it's probably nothing to worry about. At age 18, I went off to college and remember telling my dad on the phone one morning that I felt "off". Specifically I felt like I was in an altered consciousness, like I was on drugs. My cognition was changing/declining. I began to get worried about this during my first semester of college. I was sleeping even more; I couldn't think as clearly as I used to; and my anxiety levels had sky-rocketed (not that I was particularly anxious about anything, but my heart rate would get very high very easily).

Second semester of college, I stopped drinking and smoking pot (I had occasionally smoked in high school and beginning of college) and completely stopped socializing on weekends. I was nervous that by binge drinking, smoking pot, and dabbling in hallucinogens in high school that I had permanently damaged my brain and that this was the cause of my symptoms. The next summer I worked a manual labor job, which was very difficult in my condition, but I persevered, thinking that I could make myself better through exercise. I remember many days stopping for a moment to think, What the hell happened to me? Am I slowly losing my mind? I was a completely different person than I was when I was healthy, and it was a horribly frightening experience. The exercise and endorphins perhaps made me a bit happier, but the symptoms were still there, and I was too weak to do anything but work my job, eat, and sleep. When I saw friends on the weekend, I would actually fall asleep while hanging out with them.

Third and fourth semester of college, things only got worse. I started popping caffeine pills in class just to stay awake. My heart rate was often so high that I would be having miniature panic attacks throughout the day (and they were quite painful). Any time I got the chance, I would sleep. Depression also kicked in during this year, leaving me often contemplating suicide. I still thought perhaps I had caused this condition myself through my choices in high school. Nonetheless, I saw my doctor again in between my third and fourth semester who told me that I was depressed, it was stress, etc. He told me to think about trying an SSRI. Fourth semester I started going to my on-campus therapists. Knowing myself and considering how my illness progressed, I knew that my symptoms were not the cause of any one event in my life, so I doubted therapy would have any effect, but I needed some sort of a prescription drug to cope. I convinced one therapist to put me on an anti-anxiety medication. It did barely anything but give me headaches so I stopped. These two semesters and the following summer were easily the worst periods of my life. I really don't think I could ever go through something like that again and survive.

Despite my illness, I still was trying to make the best of life. The summer after my fourth semester I went to Paris to live and work. I continued to get sick. A relationship that I had fell apart (I believe due in part to my inability to be who I know I am). As a result of a extremely bad cognitive spell, I crashed a scooter in the middle of Paris traffic not once but twice; one of those crashes was a very close call, and I am lucky to be alive. While in Paris, I found a doctor that spoke broken English, whom I convinced to check my testosterone and prescribe me the SSRI Lexapro.

The Lexapro did something, but I realized through taking it that it was not the answer. It made me feel a bit happier, but I still slept a lot, my cognition was still greatly impacted, etc. I stopped taking it soon after beginning. The testosterone came back fairly low. I can't remember the exact number, but I think it was in the high 300s. The testosterone level seemed like it could be an issue, so I changed my diet to a high-fat, no refined carbs diet. All the same, I decided to research other issues that I could have. I spent weeks using every moment I wasn't working or sleeping to research my problem. I came up with a list of about 12 things that could cause fatigue and brain fog (i.e. the cognitive decline). When I returned home, I called the same doctor (which I now realize was a horrible doctor) and asked him to check for these 12 things. The results came back: you have celiac disease.

I was very upset that it had taken so long to figure this out. For those of you that don't know, celiac disease is an auto-immune reaction to the protein gluten (found in wheat, barley, rye, and spelt). The body reacts to gluten as it it were an invader like a virus. Unfortunately, the immune system also attacks the villi (finger-like projections that help to absorb micronutrients) of the intestines. What this means is (1) your body takes a toll because it is in attack-mode every time you eat and (2) over time you get increasingly sicker as your intestines become increasingly destroyed, and as a result you can no longer properly digest food.

At the same time, I was excited. Here is an answer. This is why you were sick. Given time, you'll get better.

That doctor had tested my testosterone level as well at this time. Testosterone came back at 388 ng/dL. LH and FSH were normal and mid-range. Great, I thought. This will get better too! Of course my testosterone was low: my body couldn't digest food correctly!

(to be continued in next post)


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I gave it two months. During those two months I obviously ate no gluten but also got rid of dairy, having heard that dairy can be tough on the digestive system, especially for celiacs. Essentially I was on a Paleo-type diet. I also followed Tim Ferriss's protocol for raising testosterone (I will make another post about this for those of you that are interested. It is in his book The Four-Hour Body.) Some things got better. The fatigue and weakness weren't as pronounced. My mind seemed like it was coming back a bit; at least I wasn't having the extreme brain fog attacks that I had had before. My sexuality and libido started to come back (they had waned particularly during the prior summer). Everything got a bit better, but I wasn't cured, I wasn't me just yet.

So I went and saw a doctor again (a different one, not a specialist). Note at this point I am in my fifth semester of college, out of eight semester (four years). I thought for sure that my testosterone would be normal at this point. I was no longer eating gluten. I wasn't even eating dairy. And I was following a special protocol of a guy who seemed reliable. I though that my issues were probably related to a lack of proper vitamin status in my body, the result of still damaged intestines.

Of course, testosterone was still low. And aside from a slightly low White Blood Cell Count, which the doctor explained was fine, nothing else was off:

Results 11/04/2011 (abridged):

Vitamin D 25-OH Total - 74 (30-100) ng/mL
Testosterone, Total - 328 (262-1593) ng/dL
SHBG - 22.30 (13-71) nmol/L
Testosterone, Free - 84 (50-350) pg/mL
TSH - 1.53 (0.55-4.78) mU/L

A month later he ran a couple more tests. The karyotype was to rule out Klinefelter's Syndrome

Results 12/02/2011:

FSH - 7.7 (1.0-18.0) mU/mL
LH - 6.0 (<10.0) mIU/mL
Karyotype - Normal male karyotype
Growth Hormone - 0.3 (<=10.0) ng/mL

This doctor was particularly concerned about the low testosterone. I distinctly remember him saying, "Listen, this is way too low for a 20 year old guy. If you have to treat it, you have to treat it. Too bad." He sent me to talk to a gastroenterologist (digestive system specialist) whom he thought knew enough about celiac disease that he could discuss with me the relationship between celiac disease and low testosterone.

The gastroenterologist said he knew of no connection between celiac disease and low testosterone in the literature. He too decided to run a whole slew of tests on me. My anti-bodies against gluten came back as normal, meaning that I should be getting better from the celiac disease (and confirmed that I was in fact no longer digesting gluten). We tested for a bacterial overgrowth in my small intestine as well as an allergy panel (by blood). Both were completely negative. Everything came back as normal, except again for a low White Blood Cell Count, which he also was not worried about. The testosterone again came back as low.

Results 12/09/2011 (abridged):

Testosterone, Total - 281 (262-1593) ng/dL
Thyroxine - 8.3 (5.3-10.5) ug/dL
Thyroxine, Free - 1.4 (0.7-1.7) ng/dL

At this point, I had been eating gluten-free for about 3 1/2 months. I decided that maybe the testosterone was what was still causing me problems, and maybe it wasn't going to get any better. So at the same time I saw the gastro, I saw an MD whose practice specializes in TRT. I went in and asked him a whole slew of questions for about an hour. I was quite nervous about beginning testosterone replacement therapy (TRT) at such a young age, but I felt like complete shit and needed to get my life back on track. I attend a top university at which academics can be very rigorous, and I have always been a competitive person. At this point I was barely getting by, and I was already halfway through college. As I care immensely about my academics and my time at college, I felt as though I had no time to spare in getting better. I mean, college or not, who does?

This MD wanted to inject me with testosterone the minute he walked through the door. He was certain it would cure all my problems. He actually said to me, "You know what I thought when I walked in here? I thought, there's a guy who is low in testosterone." He meant that he could see it in my slim, non-muscular build and young face. And I agree, I do not have the aesthetics of someone with a healthy testosterone level.

He too ran his own set of tests.

Results 12/08/2011 (abridged):

White Blood Count - 4.6 (4.0-11.0) K/uL
Testosterone, Total - 311 (241-827) ng/dL
Testosterone, Free - 0.84 (0.95-4.30) ng/dL LOW
FSH - 6.0 (1.4-18.1) mIU/mL
LH - 4.54 (1.50-9.30) mIU/mL
Estradiol - 22 (<52) pg/mL
Prolactin - 7.2 (2.1-17.7) ng/mL
DHEA, serum RIA - 9.1 (1.80-12.50) ng/mL
TSH - 1.12 (0.40-4.50) uIU/mL

When the results came back, the doctor said, "You're FSH and LH are good, so that means your testicles simply are not working. The Leydig cells are damaged." When I asked if they would ever regain their function again, he said, "Who knows? But probably not." So I began treatment at 200mg of Testosterone Cyp IM injection once every two weeks.

(to be continued in next post)


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Around this same time, I started eating a very specific diet that I had read about in conjunction with healing from celiac disease. This was about a year ago, so it's hard to remember exactly how I felt at this time. I know that I didn't get that "I'm king of the world" feeling while on the testosterone. Of course, I think this is normal, and the doctor had told me that it takes some time to really start feeling the effects. All this time I kept thinking about the fertility risk. The doctor had assured me that I would be infertile while on TRT. He also said that I may have some testicular atrophy. He claimed though that at any point I could get off the treatment and would regain my fertility and testicle size in a matter of months.

At some point after my third shot, I remember feeling pretty damn good. I remember having a high confidence level and thinking, Well, something must be working. I also remember that my libido was not as crazy strong as I expected it would be. I even thought that it may have decreased a bit while on the treatment. Anyway, the thought of the fertility issue continued to gnaw at me. Would my smaller testicles look weird? How small would they get? And, most importantly, who was to say that I could actually regain fertility when I stopped, probably 10 years down the line? If your testicles atrophy for 10 whole years, would they really just kick back into gear again?

Ironically, I think as a result of me feeling good and having a lot of confidence, I started getting the idea in my head that I could beat this myself. That I'd do whatever it took. That I'd wait it out for my celiac disease to cure. That maybe this strange diet was working. And that the fertility risk just wasn't worth it. So I stopped the treatment cold turkey.

I'm going to move quickly through the last year to present day. The next semester (sixth) went so-so. I didn't crash hard after I stopped the treatment, but I still had issues. I still was fatigued. I still could not think as well I used to be able to. I still slept too much. And my sex drive wasn't where it was when I was young, before all this began.

Last summer was pretty bad. I worked a normal full-time work week. I was unmotivated. Tired. A bit depressed. I kept looking for answers in anything. I seriously considered taking a year off from school to try to figure things out. Ultimately I went to school, thinking it was best to keep moving along and try to figure things out as I went.

Recently, I decided it was time to return to the testosterone issue. I had tried everything under the sun to feel better and/or raise my testosterone level during the past year (diet changes, supplements, etc.), and nothing worked like I wanted it to.

I decided to check my levels again (I just went to my on-campus heath services). If my levels hadn't returned to normal by now, I'd know they probably never would.

Results 12/11/2012 (abridged):

Testosterone - 408 (348-1197) ng/dL
Free Testosterone (Direct) - 15.0 (9.3-26.5) pg/mL
LH - 4.2 (1.7-8.6) mIU/mL
FSH - 6.6 (1.5-12.4) mIU/mL
Estradoil, Sensitive - 11 (3-70) pg/mL
Prolactin - 21.6 (4.0-15.2) ng/mL HIGH
TSH - 2.07 (0.450-4.500) uIU/mL
Vitamin D, 25-Hydroxy - 38.7 (30-100) ng/mL

As you can see, testosterone is still fairly low. Prolactin also came back as slightly elevated. At the same time as this, I saw a Urologist, to whom I explained my entire situation. I asked him to order an ultrasound so I could rule out varicoceles. I had had the doctor that put me on the testosterone injections feel my testicles for a varicocele. He didn't find any, but I wanted to be certain.

Ultrasound results (12/12/2012):

1. The testicles are normal bilaterally and there is no evidence of varicocele seen.
2. A left epididymal cyst is noted.

I went back to the Urologist with these results. He noted that the epididymal cyst was nothing to worry about. He agreed that the testosterone was too low but wanted to address the high Prolactin issue first. So he sent me off to an endocrinologist.

(to be continued in next post)


New member
I saw the Endocrinologist just last week. I must say, he was absolutely spectacular, easily the best doctor I have seen so far. He was highly competent, did not speak down to me, and allowed us to have a conversation about our issues. (Any of you who are in NYC, PM me if you would like his information. I am not sure if I can give it out in a post.)

I explained to him the whole situation. He agreed my testosterone was too low and made mention that the fact I felt better on the testosterone tells us a lot about my situation. He was concerned about the Prolactin level. We decided I should get an MRI of my pituitary, which would rule out tumors that could cause the high prolactin and/or low testosterone. I asked him why we would expect a tumor to be causing a low testosterone level when we can see that my LH and FSH are normal. He explained that when testosterone is this low, LH should be much higher (which makes a lot of sense). Since it is not high, we can't rule out a pituitary issue. He also noted he greatly expected the MRI would show no tumor (usually Prolactin levels are quite high when a Prolactin-affecting tumor is present).

We also decided to check my Prolactin again. My reading was only slightly high, so there is a chance it was just some inexplicable fluke. I got this done last Friday (12/21/2012). I am scheduled for an MRI this coming Friday (12/28/2012).

The Endocrinologist told me that if my Prolactin came back high again (assuming there was no tumor), he would like me to begin Cabergoline. He explained that high Prolactin levels can inhibit testosterone production and function. He said we would lower the levels with this drug, then check my testosterone. He said that most likely, the lowered Prolactin would not bring my testosterone level to normal, and at that point we would have to discuss treatment options. He would like to discuss an attempt at a restart through _Clomid if it reached that point.

At this point, I am thinking that if I did go on the testosterone, I would like to do exogenous testosterone with Human Chorionic Gonadotropin (HCG). I now realize that this is a possibility. This would quell my worries of losing fertility and may help with the lowered libido that I saw. (Anyone who is unfamiliar with the Testosterone + Human Chorionic Gonadotropin (HCG) treatment should google Dr. Crisler, who has posted a write up on his website as to why he feels everyone who takes IM testosterone should also be taking Human Chorionic Gonadotropin (HCG). ) The side effects and lack of a long term studies of _Clomid make me a bit worried about that treatment route. I have also read stories of increased testosterone level without alleviation of symptoms while on _Clomid (and I have read speculation as to why this might be). Similarly, I am a bit worried about taking Cabergoline. In any case, I will see the results soon of the Prolactin blood draw and the MRI and will decide what to do when that time comes.

All in all, I want to treat this. I have decided it is not worth living a half-life. I want the energy, the motivation, the sense of well-being, the return of my cognition, the general health, the more masculine looks. At the very least, the depressive symptoms that still remain need to be treated. I want to feel good again. Like a healthy, normal, 21-year-old man.

Thanks for reading.
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New member
great thread, thanks for posting. Sounds like your endo is a winner- I'm on the hunt to replace mine, too. While I'm a big guy and an endomorphic build, I can totally relate to KNOWing something wasn't right at times and not aving a dr listen to that. Hope your new dr get you straightened away.

What test did you have done to show celiac?


New member
The test is called "Transglutaminase AB, IGA". I believe that means it checks for anti-bodies (of type IGA) that attack Transglutaminase. My result was flagged as high at 26, with a reference range of 0-19 Units.

For celiac disease, it is common to do a biopsy as well to check for damaged villi. The gastroenterologist that performed the biopsy commented that he did not see any villious atrophy. I had already stopped eating gluten, so my villi could have already healed, or it is possible that he did not read the results correctly (there have been cases of different doctors looking at the results and making different diagnoses). He still believed I had celiac disease all the same, given my bloodtest results and the fact that I had experienced some level of improvement upon stopping gluten ingestion.


New member
I knew about the intestinal test... just had a colonoscopy last year, so I'm not excited to repeat it just for this, but soon enough! May go get the bloodwork done for it. may explain a lot.

Consider this- after all your trials and efforts, you're eating better than most people and (hopefully) exercising. If the testosterone therapy finishes the job, you're WAY ahead of most people rotting away in the MCDs drivethru.


New member

I got the results back from the prolactin blood test (we also tested IGF-1). To recap, my prolactin was high when it was recently tested. Strangely enough, it was normal when it was first tested a year ago. My endocrinologist recognized that this could be related to my low testosterone and wanted to lower it by the prescription drug Cabergoline and then retest my T. I asked that we test the prolactin one more time to check if it could just be a fluke (which would make sense given that prolactin was normal a year ago when my T was still low as well as given that it was only slightly elevated).

Results 12/21/2012:

Prolactin - 12.9 (4.0 - 15.2) ng/mL
IGF-1 - 225 (83 - 344) ng/mL

So it was normal! This means I will not have to go on Cabergoline. And assuming that my MRI (which I had done two days ago on Friday) comes back clean, I will be able to begin testosterone treatment. I'm quite excited.


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Wow! It is amazing how similar our stories are and how beneficial it is to know that I'm not the only one fighting problems for years with no real answer til now. I'm also fairly young and this seems to be the last thing that doctors want to treat for young guys like us. I'm two weeks into a testosterone replacement therapy (TRT) protocol and recently tested T Free of 1.1 and T Total of 49. I always knew many things were not right, but after what feels like millions of docotors I'm hoping to have found a pathway to a new life through TRT. Good luck and stay in touch.


New member

Last week, I snagged an earlier appointment with my endocrinologist when someone cancelled. We discussed the results of the latest labs showing normal IGF-1 and normal Prolactin. The normal Prolactin indicated that we could essentially ignore the issue of the once slightly elevated Prolactin level and procede with the testosterone treatment. He also looked at the MRI I had done and concluded that it was negative (showed no signs of a growth).

So at that point it was time to discuss treatment.

He began by explaining that Clomid would be the easiest route to take, that it's simply a pill I could take, but that we really don't know a lot about how safe it is (especially for long-term--10, 20 years--treatment). I would be on it for 1 to 2 years, then we'd pull me off it and see if my levels stayed normal. If not, we'd have to discuss treatment again. He said that this would be a good treatment option for me given that I want to maintain my fertility (I had explained to him that this is the reason I got off the treatment previously).

I told him that I was not very comfortable with the Clomid treatment. I mentioned that it was not FDA approved for use by men, which he acknowledged. I also mentioned that I had read anecdotal reports of men who experience no positive effects or even negative effects with the treatment. As I stated before, I want to experience alleviation of my symptoms as soon as possible, so dealing with a treatment that may not be effective was a huge deterrence.

I suggested exogenous testosterone with HCG to maintain fertility. I explained to him that one of the reasons I had stopped the treatment earlier was that I had been worried about unactivated LH receptors. When you are on exogenous testosterone, LH and FSH are undetectable in the blood. This, as well as fertility, worried me since I had read laymen speculation of LH receptor activation being central to libido. My libido seemed to actually decrease when I was on the shots for that brief stint of time also.

He agreed with my treatment proposal! I am now on 100 mg of testosterone cypionate every week. I split the dosage into two intramuscular shots of 50 mg each. We did not discuss splitting the dosage; he is under the impression that I would take the full 100 at once, but I thought that I might as well split it into twice weekly since I don't mind the extra shot, in order to try to minimize e2 conversion and keep levels as stable as possible. I am also on HCG at 250IUs twice a week.

I have taken two shots of the testosterone (one on last Thursday 1/3/13 and one on Monday 1/7/13). The HCG should arrive tomorrow, and I think I will be taking it the day before my testosterone shot.

I am very excited to start seeing results. When I took the first shot, I had a bit of an acute stimulation reaction as well as a feeling of slight euphoria. That disappeared the next day and has not returned. I believe this to be a normal reaction as I have read about dopamine being released right when the shots begin, then subsiding. I do not expect this sort of reaction in the future.

To re-iterate my symptoms I believe to be associated with low testosterone: mild depression, apathy, lack of energy, poor quality of sleep leading to over-sleeping, lack of motivation, decreased cognitive capacity, lack of well-being (not anxiety, but disappointment and worry about issues in life), and decreased sexual enjoyment (but with the interest and ability present).

(Note -- I also am less virilized than many of my peers: I have extremely very low muscle mass, I lack facial hair except for sparse upper lip and chin hair, my voice is pitched a bit higher than my peers, and I have a young-looking face.)

I really hope to find answers to these issues in this treatment. The worst symptoms by far have been the depression and the lack of well-being; I have a hard time enjoying life like I used to only 3-4 years ago. I still get by and have enjoyable experiences, but they are less often and punctuated by periods of depression and cognitive impairment that I simply try to push through. I hope that testosterone replacement therapy (TRT) can help me in these respects. Increased virilization would also be a much-welcomed change. I expect, based on a study I have read, that I should begin to see changes about three weeks into the treatment. I can't wait.


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Hope you start seeing results ! Make sure you get a blood test in a couple weeks to see where this protocol puts your testosterone and estrogen.


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So what's the latest?? How is it going?

So how is it going now??? I'm real interested in knowing. I have a similar story, but I'm older and actually had a Pituitary tumor. That is all resolved but still Testosterone is on the low end and Dr.'s don't seem to care much. Some varicoceles and epididymal cysts but none of my Dr's thinks it's worth doing anything about. Hope everything is great for you.