Need to lower T injections, but NOT allow my own production to increase

[WasHousebound]

My chronic health issues are far too complicated for this forum or even for my doctors for that matter, so I'll try to ask my question without much context:

My HRT appears to be helping me because it reduces my own T production, rather than because it increases my available T. I'm suffering complex Erythrocytosis for a year (even while T was mid-range, so not the cause) and have a hematologist and get phlebotomy semiweekly when needed. He'll Rx whatever I might need, I just have to know what to ask for.
Recent Blood Work:
Red Blood Cell count high
MCV low
MCH low
RDW high
ANISOCYTOSIS
POIKILOCYTOSIS
MICROCYTOSIS
OVALOCYTES
LEFT SHIFT present
BURR CELLS
(only in caps because I copied directly from my online medical records)
Platelets probably excess, but they only say 'clumped' and 'adequate'
all else in range, not allowing them to test T because I'm cheating to be on 200mg/wk - probably near top of range but not excess

Before frequent phlebotomy [that started] six months ago [and continued until a month or two ago and will continue per blood tests], I could not walk without substantial pain even with a cane.
After phlebotomy, on 170mg/wk my blood pressure, temperature, and O2% were still extremely low and I could barely walk without a cane.
On 200mg/wk for a couple months, I've been active, working out slightly, and am vital. This has been great.
But now while my temperature is up to 'normal', my O2% is a full 98%, and I'm still fairly vital; my blood pressure is going dangerously high. (registered up to 160/100 resting, though right now is more typical for me at 149/78 with 77 pulse resting; after starting high blood pressure medicine a couple weeks ago; more blood pressure medicine gives me an immediate headache on exertion so lowered dose slightly)

Looks like I should cut down on my T dose, but that's going to drop my condition fast. My best guess is that if my own production is allowed to start back up, I'll do much worse.
I'm due for surgery shortly, and frankly don't want to start my physical libido or T production at all until after surgery. (please don't ask more background)
I'm thin as a rail (but good cut and muscle for weight), and have no gynomastia.

What PCT would allow me to maintain some vitality while dropping back down to 170mg/wk, but NOT start my own T production, and even prevent my own production?

 

[Dreaded Pirate Roberts]

So 50mg a week will completely shut down your natural production. You have a misunderstanding of what is at play. I'm not experience with this but guy donate blood once a month to keep the hemacrit down. Once every 6 months seems like a long time in between. Maybe try donating blood or have the phlebotomist come more often. It your cropped in pain over it drop the trt dose to 100 and then donate blood and once your back to normal you can raise the dose a little while monitoring the hematocrit levels.

Getting. Nurse to draw a pint isn't hard.

But I'm not a Doctor so take if for what it is.

 

[Megatron28]

Pretty much any amount of exogenous testosterone will result in full HPTA shutdown. That means your testicles stop producing their own (endogenous) testosterone.

 

[WasHousebound]

Thanks guys,
Not sure what to think. Contrary to your information, it does not appear that my production is completely shut down, but as you suggest my production should have been shut down for several years by now, buy then I would not have pain behind the stone that they need to remove from my seminal vesicle. Any lowering of my T injections causes pain and weakness, to the point of complete debility at over 100mg/wk, and just had a ultrasound last week of that stone and testes and will expect to hear back about what surgery they intend to do. I have no idea (nor do my several doctors, apparently) why I have severe symptoms at 160mg/wk that reduce at 170mg/wk and go away completely at 200mg/wk. Those numbers increased over the last several years, where 100mg/wk was plenty 4-5 years ago.
I may have to go lower T injections to symptomatic levels so they can observe me all messed up; but would rather avoid several months of pain. I'm ready to have them cut off my right nut if that will make this go away. (I'm not kidding, that may be the source of problems.)
Not sure if this helps, but my thyroid is also completely shut off with 300mg of Armour Thyroid with similar dysfunction if I lower the dose at all. That's also completely unheard of.
They did two brain MRI's earlier this year, determining only that my pituitary is underactive (and not cancerous), which is an obvious result of having most of what it produces shut off.

Since starting HRT, I had gynomastia for a short while, and learned (here!) about anastrazole, which I then had it custom compounded at microdoses. I then learned (here!) that twice a week injections would be worth trying to avoid it, and that worked permanently. My short bout of gynomastia (high E) only manifested as a hard marble deep inside my left 'tit' so it is extremely easy to verify if I have excess E, and there's not even a hint of the marble. E could be low, and I have no home method of testing that. I learned more here than my Urologists or Endocrinologists knew, and one point had one log into my account in his office to see a thread! He then used that data to determine a prescription (maybe that was the anastrazole microdose).

As detailed in my original message, my red blood cells are beyond just polycythemia or erythrocytosis, and now my blood is so messed up who knows what is needed. I'll find out today if my hematocrit is too high, which is what they use as their determining test, and they'll do 500ml of phlebotomy tomorrow. I get CBC done every two weeks, with a comprehensive CBC and CMP every eight weeks.

Anecdotally, I recently read that Korean Eunucks (which apparently still or recently exist(ed) in some religious/cultural context, and don't get modern sex change hormones) have been well studied medically and they actually live longer, and while they have hot flashes and other problems, they don't have any of what I'm suffering. I infer from those studies that my problem is not related to low T. What else might the T injections be compensating for, or suppressing? I figure if my right nut is messed up (from an injury as a toddler) maybe it is the problem, but fail to have any explanation. If they merely leave it optional, I see no reason to not have them remove it completely (as some soccer players are forced to do from injury). (I've always been very much male and wish to stay that way, and want to recover my ability to be powerful again - I was a body builder for a while in college, and didn't mess with hormones)

I see my hematologist next week, and if I can glean any information he can use from this thread, he can prescribe whatever I need. By about that time, I should also hear from Urology (at a different hospital) about surgery recommendations, and would love to have clear information to tell them.

This is desperate and limits my life substantially. I'll do just about anything to get my health back.

 

[Megatron28]

What's your LH and FSH at with given Testosterone dosages. Let's see lab work showing that your HPTA isn't shut down while on exogenous testosterone.

 

[WasHousebound]

Great info as always, thank you. That's why I ask here. Both my LH and FSH dropped to nothing (<0.2, <0.7) after starting HRT, but they haven't been even tested since 2013, nor DHT, E, or other related tests. I'll ask for a full hormone panel. I'll let you know the results in a week or so.

 

[jojo25jj]

Yes, for restart your own production you have to stop TRT completely. With lower amounts you only will end with too low T-level only without recover your own production.
But, you could try to lower your E2 signicecant, could be this will reise your LH FSH because this is the switch for the brain to relase more of it. Was trying it in the past and yes, I was getting bigger balls from more AI.
But for complete recovery you have to stop your TRT also. This trick is not working forever, I think.

 

[Entourage_Doc]

You most like need surgical intervention at this point. This would help produce the highest quality of life. You will most likely have to continue to increase dose of exogenous T to prevent symptoms. The is going to negatively effect you long term prognosis.

Once you get a metabolic panel post the results and I will take a look

Dr. B

 

[WasHousebound]

Dreaded Pirate Roberts and Megatron:
Thanks for setting me straight. My premise was false. I just got my test results back:
LH <.5 (pituitary off)
FSH <.3 (pituitary off)
TSH <0.02 (pituitary off - thyroid)
Total Testosterone: 481 ng/dL (range 160 - 726 ng/dL)
Estradiol: 33
Free T4 - near bottom of range even though I take 300mg/day Armour Thyroid (this likely means TPO antibody is active) - parallel to what seems to be happening with testosterone, but no antibody or excess SHBG has been found.
CBC with differential (simplified, as the details are mostly a list of Latin): Excess Red Blood Cells, seriously undersized and odd shaped due to intentional anemia (doctor's orders) which allows oxygen transport through my blood. Iron would be like poison to me now, my red blood cells would take up all blood volume and my muscles would all suffocate because of erythrocytosis.
CMP - all good
DHT: no result (yet?)
Bioavailable and Free T: I don't think they bothered, or no results yet.

I skipped a biweekly testosterone dose for this test, but for one week from an injection (100mg twice a week) isn't that low testosterone level surprising? What destroys testosterone? Clearly I should stay on 200mg/wk at least, or more based on these tests. Yet how much does a man need total to live a normal life? If I'm injecting more than what a man needs, what other factor is involved?

Entourage Doc: I'm game. What surgery in particular? Remove just the stone in seminal vesicle which they claim is irrelevant, remove right nut, or something else? I'll do whatever surgery is necessary to get over this condition, and ask for it next month. Please explain your assertion for me, so I can pass it on to Urology.

Noteworthy, not expected: morning wood peaked a few days after skipping a dose, so sexual performance may not correlate to maximum testosterone, or the not-yet-received DHT may answer the question. Any other test that I should ask for to figure this out?

The real question here is why do I have to inject so much and end up with such low levels and severe effects of low testosterone even at mid-range? I'm stumped, but the trouble is that the doctors are stumped. With credible data, I can get them to do something. Does anyone have any insight?

 

[Megatron28]

I would get blood work again when you have not skipped an injection. Go for a month without missing any injections and let's see where your TT and E2 come in at.

 

[WasHousebound]

I cannot have an accurate test on record there, because my prescribing doctor is stingy on it, so another specialist is watching the substantially positive effects of taking extra T. He'll see when T is too high for my health based on other blood results in his specialty.
Both TT and E2 are higher if I didn't skip a dose, obviously. I think we can assume high end of normal range on both, neither were excess. I'm sorry I can't be more accurate.

Same as my thyroid, why do I have to take enough exogenous testosterone that I should be at max range, and any less leaves me barely able to walk?

It just seems like there's some factor at play that has not been considered. Hey 'Doc' what surgery were you talking about? You asked for a CMP. I just checked, and there's nothing on it worth writing. Did you mean a CBC? Those are the crazy results, but under control. Let me know what tests you were interested in.

How much T does a typical man need to inject to have levels at the high end of normal range, with no production of their own? If I'm injecting much more than that, why? If so, it must be serving some other purpose.

 

[WasHousebound]

result just came in from same blood draw:
DIHYDROTESTOSTERONE 973.0 pg/mL 106.0 - 719.0 pg/mL H

 

[Megatron28]

I cannot have an accurate test on record there, because my prescribing doctor is stingy on it, so another specialist is watching the substantially positive effects of taking extra T. He'll see when T is too high for my health based on other blood results in his specialty.
Both TT and E2 are higher if I didn't skip a dose, obviously. I think we can assume high end of normal range on both, neither were excess. I'm sorry I can't be more accurate.

Same as my thyroid, why do I have to take enough exogenous testosterone that I should be at max range, and any less leaves me barely able to walk?

It just seems like there's some factor at play that has not been considered. Hey 'Doc' what surgery were you talking about? You asked for a CMP. I just checked, and there's nothing on it worth writing. Did you mean a CBC? Those are the crazy results, but under control. Let me know what tests you were interested in.

How much T does a typical man need to inject to have levels at the high end of normal range, with no production of their own? If I'm injecting much more than that, why? If so, it must be serving some other purpose.

Use www.privatemdlabs.com. read the FAQs sticky below in my signature to learn how.

 

[WasHousebound]

Megatron: Read your stickies; very informative. But...

What does a normal man require to stay at high total T with their own production shut off? (you showed a chart with response to doses but not long term effect of steady dose HRT)

Am I injecting more than needed already? If so, what possible reason would I have to need more than normal dose to stay walking at all?

Is my high DHT considered an excess or health issue?

Might RAISING my T injections to 250mg or 300mg/wk solve things in the short run, up until surgery? (which is just the stone from seminal vesicle unless someone suggests otherwise)

Entourage_Doc suggested surgical intervention. Okay, would anyone care to elaborate on what surgery? I'm actually scheduled for surgery consult in a month and then surgery, so now's the time to figure this out.

BTW:
My LH and FSH are zeroed out, and that's skipping a dose. They are absolutely zeroed out on higher dose. My current labs should be sufficient to point to what is wrong. I will pay for my own independent lab work as well at some point. So I guess change my premise completely: instead of starting a PCT and lowering, I'll raise and continue to be powerful for another month or two. I guess that begs the question of how long someone can stay above maximum normal before needing a break.

 

[casanovaaa]

what are you having surgery for?

 

[WasHousebound]

snip snip

what are you having surgery for?

I started out the thread not going to go into it, but what the hell, I have nothing to hide.

There's a permanent stone in my right 'vas' or seminal vesicle that they've confirmed for over a decade, but I can't seem to get them to remove it!

My right epididimus often hurts or gets inflamed, and sometimes so does my right nut. Right nut might have a problem that doesn't show on ultrasound, right nut descended so late I can remember it, and I vaguely recall being paddled as a toddler with a board so hard that it may have damaged my right nut, so I'd gladly remove my right nut if that will solve these problems. One doctor was going to remove half of my epididimus immediately in January without giving me more details; then found out he had no experience. I asked for another surgeon, and here it is nine months later unresolved. Even as I sit here right this minute, I can mildly feel my right nut hurt (or something near it). I hardly think about it after a lifetime of pain.

It makes no sense why I have to be on high dose testosterone so my serum levels are relatively high in order to be asymptomatic, but without it I can't even walk. Even veins in my right leg hurt all the way from the groin to near my ankle when things are bad. Anyone care to take an educated guess?

Any doctors out there? Please help me provide justification so that I can get my right nut removal covered by Medicare and just be done with it. I hear soccer players are prone to losing a nut and it doesn't slow them down. (I actually knew one who lost one) What has less risk and side effects? Cutting out the epididimus and sealing it off, or just removing my right nut? I'm inclined to think removal of my right nut would be less risk.

Is that enough information? I won't attach a picture!