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Author Topic: Really don't know what to do  (Read 5141 times)

rjay2b

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Really don't know what to do
« on: August 01, 2015, 09:55:10 am »
Hi guys

Not quite sure what to do with my situation.

I've been suspicious of suboptimal hormone status for many, many years now. I have had the usual tests done from time to time, over about a decade, which all came back with me in the low normal (bottom third) range for TT. I am in Australia, and it seems I can't get a lab test for FT or bioavailable T here at all. Doesn't exist. Docs order what they can based on my requests, probably to get me out of the office, tell me things are in the normal range and then leave it at that.

Testing last year again had me low end of normal, right at the upper end of normal for SHBG, estradiol below the midpoint of the range. Others (prolactin, etc) normal. I am quite convinced my balls change size from time to time, get a bit smaller, get a bit fuller. This may be in my head, but I think not. Doctors struggle not to laugh when I have said that in the past, so I don't bother anymore.

I'm 42 now. I was diagnosed with moderate venous leak by doppler ultrasound over a decade ago. I started having issues from the age of 19. I have battled ED and the self esteem issues that go with it for 23 years, and feel like I've been completely robbed of my prime as a young male. As a middle aged male, I feel a bit desperate to try to grab onto whatever is left.

PDE5 inhibitors are hit and miss. I get fully erect generally only when I am very close to orgasm. I need constant stimulation or it si lost altogether very rapidly. Penile sensitivity has been decreasing for years.

Morning / nocturnal erections are rare and not full. I don't remember the last time I had a spontaneous erection, it would have been in my teens. I have odd good days where I wake up with a surprise, and have no idea why, but that's uncommon, fleeting and not fully erect anyway.

Most recent testing last month now shows my TT in the upper half of the normal range for the first time ever (I have not got a copy yet, doc is sending it to me, so I can't post exact numbers at this time). E2 levels good, also had my thyroid and adrenals checked, doc says all good.

I am feeling a bit conflicted about this. On the one hand, if my T is fine, well that's a good thing. On the other hand this GP is a sexual health specialist and was the very first doc I ever found who would even contemplate treating a guy in the low end of the normal range, but lo and behold the baseline test I had taken for him comes back in the upper 50% of the range for the first time ever. So of course now he too is of the view that things are fine. Maybe they are? It's very confusing.

The thing is, I have virtually ALL the symptoms of low T and they're not in my head. They've been around a long time with me.

My venous leak appears to be getting worse. Years back, a PDE5 would be enough to get the blood in > blood out ratio up enough to produce a usable erection. Now I need a PDE5 and a tight ring to stand a chance. I manage successful intercourse about 30% of the time. My response to PDE5 is now very hit and miss at the best of times, I can take the thing and never know from one day to the next whether it will work.

I've done much (oh you have no idea) reading on causes of venous leak, so I think I understand re atrophy of tunica etc. The only thing I have ever seen that seems to be able to rehabilitate it is correcting androgen levels, but now I have no idea if I have an androgen problem.

Surgery for the leak is not an option I will pursue, it seems to have poor prognosis in the long term. It's also a treatment of a symptom as far as I can tell, and not the cause. I know there are investigative interventions in the works for rehabilitating the tissues (VEGF via gene therapy) but I can't see them coming to fruition within the next two decades the way trials and approval processes work, so no point hanging any hope on them.

I seem to have four choices. Get a sequence of further hormone panels pulled to see if the recent reading was a fluke, and go back to trying to convince a sequence of reluctant doctors to treat with HRT (near impossible). Try something risky like flying overseas to have my penile veins stripped out (with unknown subsequent durability of response, and unknown longterm risk to penile health) - not something I am likely to do. Thirdly, get a penile implant, accept any malformity / loss of size that causes / floppy glans (frustrating, as I actually have a really nice unit on me, if it would only function) and have to explain that every time I attempt sex with a new partner. Finally, accept the situation and come to an accommodation that I never have had, and simply never will have, the sex life most men take for granted. I have gone without sex for the entirety of my late 30s (about 5 years) because I just couldn't take what this was doing to my head, and while I do attempt it now (and have a new partner, for the time being - it will founder eventually though, the frustration is already doing its damage on us both) it is just so disheartening when things don't work and my (already low) libido and (already low) self esteem plummet like a rock.

It makes me want to just give up altogether. The sad thing is, I think I probably could, and come to some accommodation with that. Last time, I just lived alone and got a dog. I do masturbate almost daily, even though often no libido, and with a mostly poor erection, just in the hope of retaining some penile health and function in case a miracle treatment comes along.

I have been taking NO boosters (many of the things listed on this site) for some time and can't say it's made a shred of difference.  I think the leak is now severe enough that getting more blood in just won't overcome it anymore. My diet is good, there is very little junk or sugar in it. My BP, lipids etc are all excellent.

Sorry for that wall of text, but I really have no idea what to do. I'm at the end of my rope. I'm not in the habit of reaching out on internet forums, but any advice would be welcome at this point.

Thanks for those who read this far, and best wishes.

Tropicaldaze

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Re: Really don't know what to do
« Reply #1 on: August 01, 2015, 02:23:20 pm »
rjay2b,
 
Maybe you've run through the following suggestions but fwiw, have you called any of the university hospitals to find out if someone in the urology department has a sub specialty in erectile issues?  Dr. David Handlesman is an authority on TRT but I believe he's in New Zealand.  Look at the website of the Academy of Anti-Aging Medicine.  I think they're headquartered in Florida but their members are from around the world.  You can also look up the Asian Journal of Andrology.  It's a good peer reviewed medical journal and someone on staff might have names of doctors in Australia.  There must at least one doctor, if not several, who don't go by the labs and actually listen to the patient.  It's a world wide problem, trying to find a decent doctor or at least an open minded one who will TRY. 

As frustrating and depressing as it is, don't give up.  Sometimes what I say to a reluctant doctor is, "Humor me.  I know you're not certain about(fill in an illness/condition or test)but what have we got to lose by trying?"  Or, ask the doctor how he or she would feel if they were in your shoes?  Don't let them off the hook.  Make them a bit uncomfortable.  Talk to them as you would chat up someone in a pub.  Force them to let their defenses down and be human for a moment, instead of looking down at you from their medical pedestal.  A doctor needs to feel your pain and not be a wanker.
65 y.o., 5'5", 138lbs.
Complex medical history: treatment resistant ultra rapid cycling bipolar illness, history of thyroid and adrenal problems. ED/libido problems since 2010.  Restoring my physical health has been, and remains, a daunting challenge.

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Re: Really don't know what to do
« Reply #1 on: August 01, 2015, 02:23:20 pm »


Cataceous

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Re: Really don't know what to do
« Reply #2 on: August 01, 2015, 03:48:42 pm »
A quick Google search suggests that free T is measured by at least some places in Australia. I think you should pursue this, as it was my low FT that got me a T subscription--having TT in the 300s wasn't low enough for them.

Also, have you checked levels of DHT, pregnenolone, DHEA-S, progesterone, etc. for normalcy?
I am not a medical doctor; any suggestions are meant to be discussed with your doctor.
Age: 60, Ht: 5'10", Wt: 154 lbs
Protocol: 3.2 mg TE subQ qd, 2.4 mg TP subQ qd, 20 mcg GnRH subQ 5.25x/d, 6.25 mg DHEA bid, 12.5 mg enclomiphene qod
Approximate levels (peak): TT: 700 ng/dL, E2: 30 pg/mL, DHEA-S: 300 ug/dL, SHBG: 30 nMol/L

explorer

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Re: Really don't know what to do
« Reply #3 on: August 01, 2015, 04:08:58 pm »
Have you ever checked iron stores, e.g., ferritin and transferrin saturation? High iron stores can cause low T.

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Re: Really don't know what to do
« Reply #3 on: August 01, 2015, 04:08:58 pm »


PeakT

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Re: Really don't know what to do
« Reply #4 on: August 01, 2015, 08:59:27 pm »
Rjay:

Can you please post your total testosterone and SHBG number?  And can you let us know what time of the day you got the total testosterone pulled.  Super important that you post that for reasons I will explain.  We need the actual numbers though.

Btw, teecee on here is from Australia.
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

rjay2b

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Re: Really don't know what to do
« Reply #5 on: August 02, 2015, 01:30:54 am »
Thanks guys. It was quite cathartic to blurt all that out and I apologise for the length of it. I don't really have anyone to talk to about this stuff.

Re actual numbers, the doc was to email these to me but they did not come through - he's been away on leave so I'll try again this week to get him to send a copy, and post here. I'll also contact my old docs and seek copies of the historical test results but that may take a while to procure. One of my issues is that I live in a remote regional area with poor access to medical talent. My sexual health doc is a six hour drive from me, we did this consult by phone because I've known him many years. My local GP is dismissive.

Interesting that FT can be obtained here, will look into that. Docs always say it is simply not a test they can order. Current (most helpful) doc said not much use anyway and not reliable (I didn't argue, just made sure he ordered SHBG). He did say my most recent SHBG was also at the top of the normal range, so I suspect my free T is not too flash even with the surprise TT reading. I know I asked him to pull prolactin and that was fine, he pulled dhea-s on his own and said this was fine. The blood was pulled at 10am.

I have not checked my iron levels unless the doc ordered it in the most recent round - can get that done if not. When I have the results in hand, I'll post up what was ordered so you can guys can tell me what else might be worth looking at.

Thanks again.

PeakT

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Re: Really don't know what to do
« Reply #6 on: August 02, 2015, 03:23:10 am »
Thanks guys. It was quite cathartic to blurt all that out and I apologise for the length of it. I don't really have anyone to talk to about this stuff.

Re actual numbers, the doc was to email these to me but they did not come through - he's been away on leave so I'll try again this week to get him to send a copy, and post here. I'll also contact my old docs and seek copies of the historical test results but that may take a while to procure. One of my issues is that I live in a remote regional area with poor access to medical talent. My sexual health doc is a six hour drive from me, we did this consult by phone because I've known him many years. My local GP is dismissive.

Interesting that FT can be obtained here, will look into that. Docs always say it is simply not a test they can order. Current (most helpful) doc said not much use anyway and not reliable (I didn't argue, just made sure he ordered SHBG). He did say my most recent SHBG was also at the top of the normal range, so I suspect my free T is not too flash even with the surprise TT reading. I know I asked him to pull prolactin and that was fine, he pulled dhea-s on his own and said this was fine. The blood was pulled at 10am.

I have not checked my iron levels unless the doc ordered it in the most recent round - can get that done if not. When I have the results in hand, I'll post up what was ordered so you can guys can tell me what else might be worth looking at.

Thanks again.

I feel for you.  We've heard quite a few stories about Australia on the TRT side and it doesn't sound pretty.  The guys in the NHS have a heck of a time as well, but I think you guys have it the roughest.

Yes, if you can get that SHBG and total T - hopefully pretty simultaneously - we can estimate your free testosterone. 
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

rjay2b

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Re: Really don't know what to do
« Reply #7 on: August 19, 2015, 06:32:15 am »
Hi guys

Sorry for the delay in getting back, that's how long it took to extract copies of the lab work from two GPs.

I have had tests done in 03, 04 and 05. Again in 2013 (results not available, seem to have "disappeared") and again in July this year.

10/2003 (30yo):

Total T:  20.2 nmol/L  (range 11.0 - 40.0)

01/2004 (30yo):

Total T: 20.5 nmol/L
Free T: 43.0 pmol/L  (range 28.0-93.0) (NB looks like free T test is available here, contrary to what I was told last month)
LH: 5.0 U/L (range <12)
FSH: 5.0 U/l (range <10)
Prolactin: 116 mIU/L (range <500)

02/2005 (31yo):

Total T: 22.9 nmol/L
Free T: 54.0 pmol/L
SHBG: 57.0 nmol/L (range 10.0 - 70.0)
LH: 5.0 U/L
FSH: 4.0 U/L
Prolactin: 109.0 mIU/L
Oestradiol: 85.0 pmol/L (range 55-165)
DHEAS: 9.7 umol/L (range 4.3 - 12.2)

The above were all carried out by the same lab.

The following were carried out by a second lab, and the reference ranges are in some cases different:

Sometime in early 2014. I have no copy of this one:

Total T: in the lowest 1/3 of the range
SHBG: 49.0 (range 15.0 - 50.0) (I remember that one!)
E2 was about one third from the low end of the normal scale, from memory.

07/2015 (42yo):

Total T: 25.6 nmol/L (range 10.0 - 32.0). Superficially, this looks good! But ...
SHBG: 75.0 nmol/L (range 12.0 - 50.0), flagged High
LH: 3.9 IU/L (range 1.7-8.6)
FSH: 5.3 IU/L (range 1.5 - 13.0)
DHEAS: 6.9 umol/L (range 5.3 - 9.0)
DHEAS comment: dhsm
Oestradiol: <50 pmol/L (range 0-160)
Cortisol: 369 nmol/L (range 200 - 700)
Prolactin: 254 mIU/L (range 50 - 350)
Aldosterone: 382 pmol/L (range 60 - 980)
TSH: 1.54 mIU/L (range 0.40 - 4.20)
Free T4: 17.5 pmol/L (range 11.0 - 22.0)
Free T3: 5.9 pmol/L (range 3.0 - 6.2)
PSA total (modular): 0.71 ug/L (range 0.00 - 2.54)


So the last set of labs was far more comprehensive than previous. The doc did seem to actually take me seriously, and take a real interest. But he saw the total T where it was, and said "look, that's all good" and wasn't the least concerned about the high SHBG.

I'm sorry the units of measurement are those standard to Australia. I know there are formulae for converting these to the units used in the US, but I thought it would be safer to post the original results and units rather than risk stuffing up the conversion myself and giving you guys a misleading picture.

If you are able to provide any guidance as to what the above mean in the real world, I'd be grateful. I'm not looking to be told what I want to hear, if they are fine then they are fine, and I will need to look at other causes, and other options.

Thanks in advance to anyone taking the time to read over this.

rjay2b

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Re: Really don't know what to do
« Reply #8 on: August 19, 2015, 06:39:41 am »
Apologies for the addendum, PeakT asked for time of day blood was pulled. These are as follows:

10/2003: 1140
01/2004: 1645
02/2005: 1230

I now know these were all pulled too late in the day. The doc didn't tell me at the time to do it early, and nor did the pathology service who pulled the blood.

07/2015 bloods were pulled at 0950.

PeakT

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Re: Really don't know what to do
« Reply #9 on: August 19, 2015, 03:02:51 pm »
A few quick comments:

--Your estradiol is on the low side - right on the borderline from what I have heard for bone loss.  (About 15 pg/ml for all the Americans on here.)

--Your prolactin is a little on the high side but not too bad.  This could be lowering libido a little for you if that is an issue.  I would continue to monitor regularly if it was me.

--Yes, that is very high SHBG.  Check these pages out:

http://www.peaktestosterone.com/High_SHBG

http://www.peaktestosterone.com/hdr_Free_Testosterone_SHBG
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Peak Testosterone Forum

Re: Really don't know what to do
« Reply #9 on: August 19, 2015, 03:02:51 pm »