Newbie floundering

[bassack]

Hello all,

I'm 43 years old and haven't had a regular physician since my pediatrician. The only doctor that I've seen is a dermatologist. (I have a history of non-melanoma skin cancers). I finally bit the bullet, found a nearby DO who's accepted by my insurance and got a check-up. My medical history is as follows:

I was born with an undescended left testicle which wasn't diagnosed until I was 15. My pediatrician missed it and I had just assumed that I was born with only one testicle. When I learned in Biology about testicles starting out in the abdomen and then descending I brought it up with my father. I had an orchiopexy performed in which the undescended testicle was found to be viable and was brought down and sutured into my scrotum.

My puberty, which started very late (I didn't have my first ejaculation until I was almost 16) never really seems to have finished. My testicles have always been small. I have very little ejaculate with a long replenishment period. I can easily go a week without shaving and not look like I need a shave. I've grown a beard through persistence but it is very slow growing, sparse and doesn't cover a large area of my face. I'm 6'3 and weigh 255 lbs. which is mostly fat as I have very poor musculature. I am blessed to be fertile and to have a family.

I recently started having some difficulty achieving and maintaining erections and brought this up with my new doctor at my check-up. He did a digital prostate exam which was normal and ordered some lab work with the following results:

Testosterone, Serum 241 nd/dL (241-827)
Free Testosterone (Direct) 10.5 pg/mL (6.8-21.5)
PSA, Serum 0.3 ng/mL (0.0-4.0)
TSH 1.490 uIU/mL (0.350-5.500)

He was reluctant to do anything because he said my "Free Testosterone is in the normal range." I told him about secondary hypogonadism and my concerns so he ordered a test of my LH and FSH. I haven't seen the lab report so I don't know the specifics, but he told me on the phone that both were in the normal range (LH at 3.5 and FSH at 5.8. I don't know units or normal limits, having not seen the report.) and he suggested I hold off and reevaluate in six months.

I'm having trouble finding another doctor in my area who knows what he's doing or is willing to consult SWALE, as a visit to Lansing is kind of tough to arrange now.

Any suggestions from anyone on how to proceed?

[Axl]

Given your medical history, the first T-values and the way you look, I'd say you are hypogonadal. your doctor is wrong. Your free T can be in the normal range, even with a low T of 241 ng/dl. That is because your body has probably adapted itself to the low T by lowering the SHBG (Sex Hormone Binding Globulines). This results in a fairly normal free T, even with low T. So free T on its own doesn't mean a lot. What counts is the whole picture.

My suggestion, do try to find a competent doctor. I have tried for 1 year before I found a competent dr.... Look in the sticky above to see if there a doctors in your neighboorhood that are competent. If not: go to Lansing...it will save you a lot of time...unless you want to search for a year like I have had to do.

[ASaxon]

Let’s see, aside from your Total T being obviously low your other tests look okay. Your Free T is not optimal as it is not low either. My guess is that with your low Total T but normal Free T and (assuming) normal LH and FSH you just don’t seem to indicate Primary or Secondary Hypogonadism. There’s a disorder called Metabolic Hypogonadism which is characterized by low Total T and low SHBG with normal levels of Free T, LH and FSH. This is usually found in people that are overweight so if you feel you are overweight this, combined with your medical history, may explain your situation. Look at this link to begin your search on this condition, look at the “Testis” section http://www.endotext.org/obesity/obesity12/obesity12.htm

Interestingly, you only mention ED as a symptom. Usually, someone with hypogonadism (any form) has some significant cognitive and physical symptoms that are also part of the complaints. If your only complaint is ED then an ED drug may help you. As far as having hypogonadism it doesn’t look like it to me. Your low Total T could be metabolic related.

Other than that I don’t think you want to be on TRT with all the complexities and side effects that could make your life more difficult than just having ED. Perhaps others on this board have different ideas but that’s just my perception based on what you posted.

[bassack]

Axl and ASaxon,

Thank you both for your replies to my post.

As for the total picture, I did fail to mention that I've seen a big drop-off in my mental acuity over the past six months to one year. I'm also more easily fatigued and depressed. I did, however, attribute these things and the ED to unknown other factors as I feel that the hypogonadism, if any, has been a lifelong condition manifested by the other physical characteristics that I described in my post above.

Incidentally, in the two years that I had my weight down to 176 (by a switch to a vegetarian, macrobiotic diet when I was age 24) there was no positive effect on my masculinization that I was able to discern.

[pmgamer18]

You need to be on TRT but more testing is in order. Get E2 Estradiol and Total E's your Free T is not in the upper 1/3 of the labs range if it were then I would say you may not need TRT but one test is not good enough labs are not that good to go on TRT from one test. I have a rash that breaks out in the same spots on the back of my legs and was told it was skin cancer. Yet a test on the skin shows no cancer. This rash is caused by my high E2 when I got my E2 down it went away and my ED got 80% better and after 10 yrs of not being able to have sex and reach an orgasm. Getting my E2 down all of this is gone. Go to SWALE's site and read his TRT: A Recipe for Success in this the tests you need are in the beginning.
http://www.allthingsmale.com/
Phil

[Cryptochid]

Welcome to a similar history of cryptorchidism

Hyperpigmentation (adrenal dysfunction), Melanoma, Basal Cell Carcinoma, nocturnal enuresis, prostate disease (as a teenager), gynecomastia, IBS, fluid retention, inreased bladder muscle markings (neuogenic bladder), knock knee, vestibular dysfunction (cerebellar ataxia) associated with , Myoclonic jerks, muscle spazms, Low FSH and Testosterone, Skeletal dysplasia, Liver disease, osteoporosis and growth stunting to name a few side effects, notwithstanding puberty was never completed, due to exposure of a hormone blocker prepubertally. Attempting suicide through self harm as a withdrawal effect, and enduring nervous breakdowns were apart of the experience of endocrine disruption with hormones and sex steroids.

http://mc2.vicnet.net.au/home/cjdhgh/index.html

[Cryptochid]

Cryptorchidism is the most common genital problem encountered in pediatrics. Cryptorchidism literally means hidden or obscure testis and generally refers to an undescended or maldescended testis. Despite more than 100 years of research, many aspects of cryptorchidism are not well defined and remain controversial. Untreated cryptorchidism clearly has deleterious effects on the testis over time. Understanding the abnormalities of morphogenesis and the molecular and hormonal milieu associated with cryptorchidism is critical to contemporary diagnosis and treatment of this extremely common entity.

History of the Procedure: This condition was first described in 1786 by Hunter and has been recognized for centuries. The first surgical orchidopexy was attempted in 1820 by Rosenmerkal, but the first successful surgery with patient survival was not until 1877 by Annandale.

Problem: Normal testicular development begins at conception. The testis-determining factor is now identified as the SRY gene (sex-determining region on Y chromosome). The presence of this gene and an intact downstream pathway generally result in testicular formation. At 3-5 weeks' gestation, the gonadal ridge or indifferent gonad develops, and at 6 weeks, primordial germ cell migration occurs. Soon after, Sertoli cells develop and secrete müllerian-inhibiting substance (MIS), the level of which remains high throughout gestation and causes regression of müllerian ducts. At 9 weeks, Leydig cells develop and secrete testosterone. Prenatal ultrasonography shows no testicular descent before 28 weeks, other than transabdominal movement to the internal inguinal ring. Transinguinal migration, thought to be under hormonal control, occurs from weeks 28-40, usually resulting in a scrotal testis by the end of a full term of gestation.


Frequency: Overall, cryptorchidism is seen in 3% of full-term newborn boys, decreasing to 1% in boys aged 1 year. The prevalence rate is 30% in premature boys. Predisposing factors include prematurity, low birth weight, small size for gestational age, twinning, and maternal exposure to estrogen during the first trimester. A 7% incidence rate is seen in siblings of boys with undescended testes. Spontaneous descent after the first year of life is uncommon.

In the United States, prevalence ranges from 3.7% at birth to 1.1% from age 1 year to adulthood. Internationally, prevalence ranges from 4.3-4.9% at birth to 1-1.5% at 3 months to 0.8-2.5% at 9 months. Cryptorchidism is identified in 1.5-4% of fathers and 6.2% of brothers of patients with cryptorchidism. Heritability in first-degree male relatives is estimated to be 0.67.

Etiology: The multifactorial mechanism of occurrence involves (1) differential body growth relative to spermatic cord/gubernaculum; (2) increased abdominal pressure; (3) hormonal factors, including testosterone, MIS, and extrinsic estrogen; (4) development/maturation of the epididymis; (5) gubernacular attachment; and (6) genitofemoral nerve/calcitonin gene–related peptide (CGRP).


Pathophysiology: Studies support the notion that cryptorchidism is a disease state with a spectrum of associated findings rather than an isolated malformation. Three main areas of development have been researched, (1) the hypothalamus-pituitary-gonadal axis, (2) the epididymis, and (3) the gubernaculum and genitofemoral nerve.

Cryptorchidism may be a variant of hypogonadotropic hypogonadism. The normal initial postnatal gonadotropin surge at 60-90 days is absent or blunted in some boys with cryptorchidism. Without this surge, Leydig cells do not proliferate, testosterone does not increase, and germ cells do not mature. Thus, infertility may result
http://www.emedicine.com/med/topic2707.htm

[ASaxon]

Originally Posted by bassack

Axl and ASaxon,

Thank you both for your replies to my post.

As for the total picture, I did fail to mention that I've seen a big drop-off in my mental acuity over the past six months to one year. I'm also more easily fatigued and depressed. I did, however, attribute these things and the ED to unknown other factors as I feel that the hypogonadism, if any, has been a lifelong condition manifested by the other physical characteristics that I described in my post above.

Incidentally, in the two years that I had my weight down to 176 (by a switch to a vegetarian, macrobiotic diet when I was age 24) there was no positive effect on my masculinization that I was able to discern.

Bassack,

Hmmm, well, if the symptoms are chronic then you never know. Testosterone levels are very individual and what makes you feel good may not be when your T in the lower parts of the reference ranges. The difficult part is getting a doctor to even consider TRT with someone who has normal free T, LH and FSH. I guess you could always ask for a trial of TRT just to see if it helps you feel better when your T levels are higher. But good luck getting it.

[Axl]

I have noticed the opinions are a bit divided. (That's good!) I am still convinced you should talk to a knowledgeable doctor. I bet you have most of the typical sypmtoms of a hypogonadal man.

ASaxon: if you have lived like a hypogonadal man since puberty, you don't notice the typical symptoms, unless somebody explains them to you. Maybe that's why bassack hasn't mentioned them...

Bassack: In this link you will find some more info and an easy test to see if you have the symptoms. It is not exactly a scientific website (it's a commercial one), but it is a good starting point for you... check it out!

http://www.get-back-on-track.com/en/...ktiv/index.php

[Cryptochid]

Axl

You are partly correct and partly incorrect when quoting

ASaxon: if you have lived like a hypogonadal man since puberty, you don't notice the typical symptoms, unless somebody explains them to you. Maybe that's why bassack hasn't mentioned them...

Once bassack has a full understanding of cryptorchidisms' effect....things can only get better. He may reflect upon those things that will soon make sence. These effects never made sence to me until 30 years later and I am the same age as bassack...so, interesting the it catches up around the same time

As a person (hypogonadal) prepubertally, the TRT treatment to "kick in" puberty, I was certainly aware that all was not right, but didnt have a full understanding at that age. Hence your both partly correct and partly incorrect.

It was certainly a strange "growth and development" period, because (mine)just like bassack cryptorchidism, his puberty never completed...so young boys are somewhat aware of the lack of development in not completing puberty.

The main thing for bassack is start from the beginning like I did..."we" need to understand what either happened to us, or what went wrong prepubertally. Once we have an understanding of it...then we look for answers, and thats the path we are all going down.

[bassack]

Thank you all again. I can't tell you how long I lurked thinking "Why bother" before I decided to post. It's very heartening to know that there are people who are willing to sit down and share their thoughts and/or experience and I'm very appreciative to all of you.

Cryptorchid, I understand that you have a history and are of an age that are similar to mine. Have you sought treatment? If so, have you had any results that you'd like to share?

My perception of myself as less masculine than other guys is a very big part of my psyche. I believe also that especially due to my late blooming, the gap that I perceive between myself and most guys is probably not as great as I believe it to be. However, the fact that the physical attributes that I described above are partially hidden beneath my clothes has always made me feel like I'm a fraud, posing like one of the guys, when, in fact, I'm a little less. The fantasy of changing that is something that floats around my head constantly. On the other hand, dealing with the idea that there is little I can do is something that I don't want to face. I'd love to hear from anyone who has experienced what they consider a physical transformation.

[Cryptochid]

Bassack

Enjoy the journey (albeit rough at times) into completing puberty. Its a great experience at our age

[Cryptochid]

For trt options that work, that doesnt work for delayed puberty, and secondary sexual development (cryptorcidism) here a link
http://mc2.vicnet.net.au/cmt/links/index.html
I am pleased with my current treatment after trying IM and androderm that wasnt terribly successful. Be aware that cryptochid boys have a 40% increase of testicular cancer

[ASaxon]

I think I misunderstood you bassack. Do you believe that you have not completed puberty? If so then does your doctor agree with this assessment? I’m not really familiar with this condition but can someone with incomplete puberty have normal testosterone levels? I always thought that you had to have low T (in all its forms) to be in that situation, albeit I’m no expert.

If you have underdeveloped pubescent physical characteristics then I wonder why your doctor hasn’t taken that into consideration?!?! Is he aware of this or have you been hiding it from him? Just curious, seems like an obvious concern if he’s aware of the physical condition you are indicating in your posts. Curious.

I’d say keep asking questions and get as much information as possible. You are your own best advocate for your medical wellbeing, perhaps more so with this type of illness than with the more well known, and accepted, illnesses.

[Cryptochid]

Scott

His testosterone levels arent normal (now) and didnt complete puberty (secondary sex characteristics), but one can be fertile, (as 2 out of 3 boys who have cryptorchidism will be fertile) Its known as Fertile Eunuch Sydrome, but bassack hasnt said as much yet. What would be interesting to hear from Bassack is if he has long arms? and sketetal dyplasia, as I suspect growth plate closure was delayed for him, as pubertal development was delayed/incomplete. It can result in Tall Stature, similar (but not to the same extent) to acromegaly.