Clampdown33's story, nine months in...

Member Stories
#1

I’ve been a member here for a while but have mostly sought the advice of others by looking through old postings. I figure it’s about time to detail my own experience in an effort not only to contribute to the discussion, but to get everything down as a personal record. I’m going to organize this post in list form, as doing so will make it easier to read. If an effort to include my whole story and indicate everything I’ve done to try to nurse myself back to health, I’m going to break with the traditional template and organize my experience chronologically.

[Size=4]Personal Info[/size]

-Twenty-seven years old when I first took fin; still twenty-seven now.
-5’11", 160-170 lbs
-Live in New York City

[Size=4]Timeline[/size]

October 2010
-Take 1/4 tablet of Propecia-branded finasteride each day for three days. Begin to feel sexual side effects; stop and fully recover within twenty-four hours.

Late December 2010
-Try (stupidly, in retrospect) finasteride again, this time taking 1/8 tablet each day for four days. Again, feel sexual sides and stop. This time, though, in the subsequent days I begin to feel all the usual side effects: testicular pain, prostate soreness, low libido, etc. Everything minus the libido fades in about a week’s time.

January 2011
-Still experiencing low libido, about a week after quitting finasteride I also begin to experience profuse and uncontrollable sweating from my feet and the area between my testicles and anus, with lighter sweating from my hands.

Lab results
Total T: 440 ng/dL (280-800)
Free T: 11.1 pg/mL (8.8-27)
LH: 5.8 mIU/ml (1.5-12.4)
FSH: 7.2 mIU/ml (1.5-12.4)
Prolactin: 13.5ng/mL (4.05-15.20)
Estrogen: 180 (don’t have a measurement or reference range)
SHBG: 21 nmol/L (10-57)

February 2011
-My libido slowly improves, though the sweating continues as usual. The sweating is so bad that my underwear and socks are soaked through within minutes of putting them on each morning. Despite having lowered but improving libido, I’m still able to get an erection, though sensation is reduced, as is feeling during ejaculation. The sensitivity and sensation slowly come back to normal over the next few months.
-Also begin to experience a soreness in my left testicle that lasts for about an hour or two after ejaculation. The pain slowly decreases over the next few months. While never completely dissipating, it becomes so minor I barely notice it.
-Develop excess amount of belly fat, which is unusual for me, as I’ve always been very thin. Belly fat continues to be an issue to the present day.

Lab results
DHT: 30 ng/dl
DHEA-S: 211.8 ug/dl (160-449)

March 2011
-Libido continues to slowly improve; sweating continues unchanged.

Lab results
Total T: 560 ng/dl
Free T: 11.3 pg/ml
DHT: 50 ng/dl (30-85)
Albumin, serum: 4.9 g/dl (3.5-5.5)
WBC: 4.3 x10e3/ul (4-10.5)
RBC: 5.22 x10e6/ul (4.1-5.6)
Hemoglobin: 15.7 g/dl (12.5-17)
Hematocrit: 46.5% (36-50)
MCV: 89 fL (80-98)
MCH: 30.1 pg (27-34)
MCHC: 33.8 g/dl (32-36)
RDW: 13.1% (11.7-15)
Platelets: 220 x10e3/ul (140-415)
Neutrophils 43% (40-740
Lymphs: 39% (14-46)
Monocytes: 10% (10-13)
Eos: 7% (0-7)
Basos: 1% (0-3)
Neutrophils (absolute): 1.8 x10e3/ul (1.8-7.8)
Lymphs (absolute): 1.7 x10e3/ul (0.7-4.5)
Monocytes (absolute): 0.4 x10e3/ul (0.1-1)
Eos (absolute): 0.3 x10e3/ul (0-0.4)
Baso (absolute): 0.1 x10e3/ul (0-0.2)
Immature Granulocytes: 0% (0-0.1)
Immature Grans (Abs): 0 x10e3/ul (0-0.1)
Glucose, serum: 81 mg/dl (65-99)
BUN: 14 mg/dl (6-20)
Creatine, serum: 1.07 mg/dl (0.76-1.27)
eGFR: >59 ml/min/1.73 (>59)
BUN/Creatine Ratio: 13 (no measurement provided) (8-19)
Sodium, serum: 140 nmol/l (135-145)
Potassium, serum: 4 nmol/l (3.5-5.2)
Chloride, serum: 102 nmol/l (97-108)
Carbon Dioxide, total: 23 nmol/l (20-32)
Protein, total serum: 7.5 g/dl (6-8.5)
Globulin, total: 2.6 g/dl (1.5-4.5)
A/G ratio: 1.9 (no measurement provided) (1.1-2.5)
Bilirubin, total: 0.4 mg/dl (0-1.2)
AST (SGOT): 20 iu/l (0-40)
ALT (SGPT): 21 iu/L (0-55)

May 2011
-By May, my libido has gotten back to about 80 to 90 percent of what it once was. The sweating, however, is so unbearable that I go see Dr. Jacobs.

Lab results
Total T: 572 ng/dl
Free T: 83 pg/ml (46-224) (this came back uncalculated; not sure exactly how to calculate)
Bio-available T: 185.2 ng/dl (110-575)
SHBG: 30 nmol/l
Albumin: 4.9 g/dl (3.6-5.1)
TSH: 1.17 (0.270-4.2)
LH: 6.1 miu/ml
FSH: 6.3 miu/ml
Estradiol: 31.4 pg/ml
Cortisol (blood): 21 ug/dl (5-25)
Alk Phos: 73 u/l (39-120)
AST (SGOT): 17 u/l (<37)
ALT (SGPT): 17 u/L (<40)
E. Sedimentation Rate: 2 mm/hr (<26)

-Dr. Jacobs says all the results look fine to him, though he think it’s possible my bio-available testosterone might be low. He says he can’t be certain that’s the case, though. He advises a temporary round of TRT in combination with beta blockers – his thinking being the sweating might be related to anxiety. I demur on the TRT, thinking TRT seems like a drastic measure if it’s not even clear my testosterone levels are the problem.
-I try the beta blockers; they do nothing.

June 2011-July 2011
-Dr. Jacobs orders more tests, for TSH, DHEA-S, and 17-OH-Progesterone. I don’t have the results in front of me, but TSH and 17-OH- Progesterone come back in range, while DHEA-S comes back far above range. He orders an ACTH test; it comes back normal. He chalks up the inflated level to lab error.
-I began to experience discomfort in my prostate. Also, my libido, which had gotten back up to nearly pre-fin levels, suddenly begins to drop. I go for prostatitis tests, first to Dr. Melman. My urine comes back positive for white blood cells once, negative twice. I get a prescription for Cipro from another urologist. I don’t get it filled.
-At this time, I’m also diagnosed with varicocele in my left testicle, which likely accounts for the mild pain I had been experiencing in that area after quitting fin. The urologist says not to worry about the varicocele. For the time being, I don’t.
-Libido continues to drop, before settling in at a not-nonexistent but still-low level.
-I start eating a macrobiotic diet and begin exercising more regularly. See very few improvements other than the prostate pain/discomfort improving slightly.

August 2011
-Dr. Jacobs prescribes me alpha blockers. They do nothing other than make me dizzy and light-headed.
-I go see Dr. Hulinsky in Connecticut. By now, libido remains at low levels. I’m still able to achieve an erection, however. The sweating continues, and I have mild discomfort in my prostate.

Lab results
Total T: 628.2 ng/dl
Free T: 14.17 pg/ml
LH: 5.3 miu/ml
FSH: 6.9 miu/ml
Prolactin: 9.9 ng/ml
Estradiol: 20.04 pg/ml
Cortisol (blood): 15.5 ug/dl
DHEA-S: 300 ug/dl
SHBG: 53 nmol/l
DHT: 44.7 ng/dl
TSH: 1.25 uiu/ml
T4: 9.7 ug/dl (4.5-12)
Free T4: 1.34 ng/dl (0.83-1.62)
T3: 123 ng/dl (80-200)
PSA, 3rd. gen: 0.31 ng/ml (<4.00)
Normetanephrine: 0.22 nmol/l
Metanephrine: 0.21 nmol/l
Inhibin B (3): 123 pg/ml (47-308)

September 2011
-With symptoms all the same, I see Dr. Hulinsky again. We agree to try a month of Evista (raloxifene). Will likely start on it in the coming days.
-Vericocele in left testicle becomes more painful. I make an appointment with another doctor to address it.

[Size=4]Overview[/size]

Current Symptoms
-Profuse sweating all hours of the day from my feet, from the area between my testicles and anus, and from my hands, though less so in that third area.
-Very low libido, though still can achieve an erection.
-Mild prostate discomfort.
-Vericocele in left testicle.
-Excess belly fat.

General Thoughts
-Almost nine months after quitting fin, my total and free testosterone continue to rise, and my E2 continues to fall, both of which I find promising. My SHBG has risen to nearly the top of the range, though, which concerns me. My DHEA-S has risen pretty dramatically, as well, which I’m not exactly sure what to make of.
-What’s yet unexplained is not only the sweating, but why, in the midst of my T levels rising, my libido first slowly got better before then declining. Related to that, also unexplained is how, if at all, the onset of prostate discomfort ties in with the reduced libido, which declined around the same time the prostate discomfort began.
-Also worrisome is why my DHT hasn’t improved in recent months while my total testosterone has jumped up pretty dramatically. Obviously, this could be a problem with 3-adiol-g.

Current/Next Steps
-I’m awaiting results on the the following tests:
3-adiol-g
Androstenedione
Cortisol (24-hour urine)
Reverse T3
And also a repeat of all the usual hormones (Total T, SHBG, etc.)
-I’ll likely give the Evista a shot and retest all my hormones in about a month. I know the prevailing theory on the board is more toward mutated receptors – a theory I find compelling – but I feel as if I have to at least give pulling up my testosterone a try, as there are a few people who have had success doing so.
-I also may look into getting the vericocele repaired, as some studies indicate it can affect androgen levels:
onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2010.10030.x/abstract
-I’ve been keeping to a macrobiotic diet for the last few months; I’ll continue to do so, even though the effects of it have been minimal.
-I’ll also continue to exercise, both running and light anaerobic exercise, though I’ve been a bit lazy with those lately.

Going forward, I’ll provide updates as they come. Any thoughts on any of the above would be more than appreciated.

#2

clampdown, welcome, I am in the northeast also.

For the variocele research carefully. You want someone that regularly performs the surgery via microscope assisted inguinal technique.

maleinfertility.org/new-varicocelectomy.html
(there are others in the northeast that do this)

All other methods are far more crude. You will need your testicles functioning to continue your drug free approach.

On the localized sweating, any chance you’ve had lots and/or recent sun exposure with just shorts and socks on (or somehow vice versa?).

#3

Thanks for the response, kazman. I’ve been doing a lot of research regarding the varicocele – having actually already come across the site in the link you provided – and agree the microsurgicial approach seems best. I’m consulting with a doctor who’s written numerous papers with Dr. Marc Goldstein, the doctor described in the link above and I believe the creator of the microsurgical method, as well as also written many papers with the other Dr. Goldstein in San Diego. He’s very experienced in the surgery and sympathetic to PFS issues. I haven’t yet decided whether or not to move forward with it, though…

Could I ask, though, why you think the lingual approach is best? I’ve read some studies claiming the lingual approach is best, with others claiming the sublingual approach is actually superior. From what I can gather, the lingual approach seems more common and safe, while the sublingual approach is more thorough in repairing/ligating the affected veins, but that it’s a bit more risky. Have you or someone you know had the surgery?

As far as your questions about the sweating, I’m not sure I know what you’re getting at. The sweating is always more or less the same regardless of the clothing I wear or the weather. I seem to sweat just as profusely from my feet and perianal area if it’s 100 degrees out and I’m wearing light clothing as I do if it’s 0 degrees out and I’m seven multiple layers. It’s pretty unbearable.

#4

Are you supplementing Vit D? If so what form and how much?

As yo the variocele, I can’t recall what inguinal and sub-inguinal refer to. You definitely do not want to tie it off and let the remaining microscopic veins grow to accommodate the flow. The microscopic technique appears best at correcting the problem (where an incision is made, the testicle and arteries are drawn out, operated on and put back).

#5

Inguinal and sub-inguinal are both forms of microsurgical varicoelectomy – the distinction is that the cut in the inguinal procedure is made farther up the abdomen than in the sub-inguinal. (There’s actually an illustration showing the placement of the cuts in the link in your first message.) The sub-inguinal, from what I can gather, exposes more veins but also leaves more of a chance of damaging healthy veins and lymphatics. Anyway, I’m going to have to look more into which of these seems best.

Regarding vitamin D, I haven’t been supplementing it at all. The sweating began about ten days after quitting fin and has continued in earnest for the past ten months. I assume you’re wondering if over-supplementation is causing the sweating issues, but, as I said, I haven’t been supplementing it at all.

#6

Almost a year after my last update, and twenty-two months since getting off fin…

Symptom Overview

Excessive, profuse, uncontrollable sweat from the bottom of my feet and the underside of my scrotum (severity of sweat has worsened)
Virtually zero libido (same as one year ago)
Stomach and waist fat that won’t go away (same as one year ago)
Benign bilateral thyroid nodules (new symptom)
Diagnosed bacterial prostatitis, which has been treated, it seems successfully (diagnosed in the last year)
Pelvic floor dysfunction (diagnosed in the last year)
Grade-II left-sided varicocele (same as one year ago)
Varying levels of semen volume (same as one year ago)
Frequent urination (new symptom)

In January 2011, I was diagnosed with chronic bacterial prostatitis and pelvic floor dysfunction. About a month and a half of antibiotics seemed to knock out the infection, and I’ve only recently gotten around to going in for pelvic floor therapy. My pelvic floor muscles have definitely loosened, but I haven’t noticed anything in the way of symptomatic relief (notably, the frequent urination, varicocele, and possibly even low libido, which set in when I developed prostate problems four or five months after getting off fin).

My worst symptom continues to be profuse, excessive, uncontrollable sweating from the underside of my scrotum and the bottom of my feet. I saw Dr. Shippen in May, and aware my issue was unusual, it didn’t come as surprise when he told me I was the only person he’d seen post-fin who had developed excessive localized sweating.

I know it’s difficult to imagine, since everyone here sweats, and even those who consider themselves to sweat more than the average person probably don’t think it’s that big of a deal, but my sweating is so above and beyond any normal level that most people don’t have a concept as to how horrid it can be. Basically, within minutes of putting my clothes on in the morning, my underwear and socks are completely soaked. Any sort of movement is agonizingly uncomfortable, and thus I avoid movement as much as I can. I’m completely aware that this symptom isn’t anywhere near as bad as those that others have on this board, but it’s a bitch of a symptom nonetheless and has basically destroyed my life over the last two years.

Anyway, Dr. Shippen advised acupuncture, thinking that my sympathetic nervous symptom was firing too fast, but six acupuncture sessions yielded zero results. He then referred me to a complementary health doctor, theorizing that perhaps a vitamin deficiency was to blame for the sweating. Turns out I’m chronically low in a number of levels, but none explain the sweating. Be that as it may, the complementary health doctor put me on amino acids, high-dose multivitamins, iodine, vitamin B12, a complex B vitamin, vitamin D3, selenium, zeolite, and sunflower/flax seed oil. It’s been about a month and half now, and I’ve seen no change in symptoms.

I’m really at a loss as to what could be causing the sweating, and I seem to be an almost completely unique case amongst everyone here. I’m aware many guys have experienced reduced sweating after taking fin, which makes my case of profuse sweating all the more strange.

Don’t know if this is widely know, but Merck attempted to obtain a patent for finasteride for the treatment of excessive sweating in the mid-'90s: google.com/patents/US5730964

Could it be as a reaction to coming off fin something in my body has been over-expressed? My 3A-androstanediol level has slowly crept back over time, indicating increased 5-AR activity, but I was sweating even when my level was low, so I don’t think that explains anything. Could it just be lowered androgen activity that’s to blame? Why is it that the only thing that has helped at all with the sweating was a seven-day water fast I did in the spring? I’m not really one for theorizing, but there’s not much else I can do at this point.

#7

Perhaps “reflex hyperandrogenicity” occured after quitting:

viewtopic.php?f=32&t=3964&hilit=reflex+hyper#p24366

#8

Yeah, I considered this, but the problem with that theory is that other than the sweating I don’t have any other issues indicative of reflex hyperandrogenicity. Like many guys here, I’ve got no libido, have experienced stomach/waist weight gain, and my testosterone levels are nothing spectacular. All of that seems to point toward lowered androgen activity, not androgen activity that is too high.

#9

In late October/early November I started taking an extremely low dose of clonidine, an alpha blocker, in the hope it might help with the sweating as well as loosen my pelvic floor muscles. About a week to ten days after beginning intake, I accidentally missed a dosage, and the next day, upon feeling stressed about a personal matter, I suddenly developed brain fog. One month later, the brain fog hasn’t let up. I suspected “rebound hypertension,” which is a condition that sometimes occurs after ceasing intake of certain alpha blockers and of which brain fog is sometimes a symptom. However, my blood pressure is exactly the same as it was a few months ago, so that pretty much rules that condition out.

It’s just unbelievable that I had been lucky enough not to experience brain fog for my first two years of PFS, but that all this time later I’ve suddenly developed it. I mean, have there even been any other cases at all of guys developing brain fog so long after the onset of PFS? I suspect the brain fog has sometime to do with the clonidine, or maybe that the clonidine somehow exacerbated neurosterioid problems that I and all the rest of us likely have because of fin, but who the hell knows how. I’ve already had to quit my awesome career because of PFS, but I had at least managed to continue freelancing in my field. Now, with the brain fog, I don’t have the mental capacity to do any work at all, and I’m down to absolutely zero income at this point. I frankly can’t go on very long in these sorts of financial straits.

Anyway, Dr. Jacobs put me on Klonopin. Have only been on it for a few days. No results yet. We’ll see what happens.

#10

I have the same sweating problem as you. Have you been able to find anything that helps?

#11

Hi clampdown33,

Did you have any success with Klonopin ?

#12

Hi Clampdown33 have you got your vericocele repaired?