Out of my scope as for causes but anemia + low hct and hub and others are cause for concern. Hematilogist
I did the first 50ml T injection today.
After meeting with my university’s GP, we came to the decision that I should start TRT per my endo’s orders. This whole thing has been a massive distraction for me, and this will start doing something proactive about my condition. The endo has also sent lab orders to my GP (I don’t know precisely what or how often these lab orders are). The university’s immunization and allergy office will be assisting me with the injections to start with.
At the same time, I asked my GP to refer me to one of my university’s endos (without being too specific, it’s a top 10 US hospital in endocrinology), so I’ll be following up for a second opinion/monitoring with that endocrinologist in the coming months. The problem is that it’s going to probably take two months to see an endo.
Well, its pretty clear that you are not interested in taking any of the advice from the posters that have tried to help you out here. I wish you the best anyway.
VT,
I have nothing but respect for you, but I feel like that is very unfair of you to say. I’ve been bringing up all of the points discussed on this thread with my doctors. It’s just that the endo did not feel that those considerations impacted her conclusion that the low T was caused by the earlier (and long-untreated) brain trauma, and none of the doctors felt that the blood work/biopsies they took revealed something suggesting otherwise.
Again, this case is not closed. But I’m just doing the best I can. I’m a reasonably well-educated 24 year old, but I fully understand most of this stuff to be over my head. I’m trying to be a proactive patient, but at the same time I’m neither a doctor nor an endocrinologist, and at some point I have to rely upon the expertise of the doctors (two gps, a gastro, a urologist, and an endo).
I mean, they’ve run me through the gamut: tubes, blood, biopsies, etc. And after bringing up the points raised on this thread, suggesting that maybe other things might be at play, etc, the endo stood by her conclusion. It’s not that I necessarily believe one way or the other about this forum being more or less correct than my endo: my exepertise is not sufficient to make that judgment. But this forum did allow me to know what questions to ask, and to see whether my endo had considered the possibilities that were raised on this thread.
You can call me many things: weak, stupid, etc. Some–maybe all–are probably true. But I’m certainly not bullheaded, and I certainly did not ignore the input on this thread. I’m just trying to do the best I can with the information and resources available to me. By resources, I mean not only this forum but also the prescribing physicians that I’ve actually been meeting with and such. And to be frank, I’m sort of stuck with them for better or for worse–I’m a graduate student at a university.
I will be following up with a second endocrinologist. My main comfort at this point is that, considering that I’m not symptomatic, hopefully nothing bad will happen if this is indeed the wrong decision. Frankly, I confronted two decisions: I could either start the TRT per my endo’s suggestion, or I could do nothing. Doing nothing, I would not see another doctor for at least a month and a half.
This whole series of events have been nothing short of a shock, all resulting from my saying “hmm, I wonder where my T levels are at considering how little sex drive I have.” And to be honest, I just can’t have all of this following me until late March when I’ll likely see an endo again. I just can’t keep monitoring my phone constantly when I’m supposed to be learning bankruptcy law or international law. It just can’t keep going on.
So I’ve raised all the points discussed with my endo. I feel like at this point the reasonable decision was to start the TRT and continue monitoring the situation.
Just as a quick update, I’m going to try to have my GP refer me to a hematologist if she thinks it’s appropriate at this point. Again, the problem is that any referrals here take at least one to two months (if I’m lucky).
To be frank, I’ve felt sort of oddly run-down today after the first injection of testosterone cypionate yesterday (a .5Ml dose). I’ve read that people’s reactions to this stuff is very individual, so maybe that’s just my initial reaction to having it in my body. Just have felt sort of heavy-lidded all day compared to normal.
My endo did not prescribe either hcg or Arimidex/anastrozole, and I’ll be honest: when she called, I was not clear-headed enough to discuss that point with her. I’m going to call her soon to discuss that.
At this point, I think that the head trauma explanation of my condition just seems to be the most reasonable regarding my secondary hypogonadism. I’m of course by no means an expert, but when I asked about whether that would have shown up on the MRI, my endo said that it does not always present itself. That explanation fits with the general timelines of my symptoms. When I see the second endocrinologist in a month or so, that will provide another opportunity to challenge that position.
And just to reiterate, this is a process that I’m still trying to improve upon.
I responded to your PM. Feel free to cut/paste it here for the benefit of others if you wish.
I sent VTBalla a PM basically reiterating some of the things I have written on this thread and asking him what he would do if he were in my situation right now. His response:
"
There were several good inputs by KSMan that you seem to have glossed over–Vitamin D, Iodine, a couple others. You should look into that further.
Truthuflly, I think your low T is a symptom and not a cause. Your actaul blood markers are more out of wahck than anyone I’ve seen on this board, and it would be good to figure out why. It looks like you have done that, but a hematologist would be the one you should seek. If I were you, I would hunt one down and figure out why my blood makers were low. I can’t draw a link from low T to blood disorders, so that’s the reason for my concern there.
Also, you are being treated for primary hypogonadism (testicular failure) when it is rather obvious that you are secondary hypogondal. Exogenous Testosterone shuts your testicles down unnecessarily whereas secondary treatment (SERM or HCG) would preserve them and create natural output. This is always preferable to exogenous T if one is able to produce it. In this regard, I would ask for a 3-4 week trial of a SERM to gauge how my pituitary and testicles respond. Depending on that, HCG monotherapy or even discontinuation of the SERM entirely (if your system “reboots”) are in order. I just think taking exogenous T is a mistake for you. You don’t need a medical degree to draw this conclusion. "
50mg will shut down what production you did have and not give you enough to keep your levels where you were at.
just my opinion here, but I would not be surprised if you will feel pretty bad for the next several weeks if you keep the schedule they have you on.
please do a search in other threads… see how many success stories there are for people working with endos… I will give you a clue, there aren’t any that I know of.
with a TSH of > 2 you really need to test FT4, FT3, RT3, cortisol, ferritin.
Update: spent a lot of time meeting and discussing with my docs today:
First off, I’ve cut ties with my prior endo from my homestate (…or she cut ties with me…it was basically mutual). I got in touch with her today and attempted to discuss HcG and SERM therapy to further investigate the secondary hypogonadism and why she prescribed me the testosterone cypionate. As the discussion continued, she basically broke down and said that I needed to find an endo with more experience because she did not possess the expertise to handle my situation. To quote her (…I’m not kidding): “You probably know more about all this stuff at this point than I do. You should go see those [my university] MENSA geniuses, because I’ll acknowledge that I’m in over my head here.” It was a pretty shocking breakdown from the confidence she exuded the last time we spoke.
Frankly, I’m still trying to figure out how much damage I may have potentially done to myself by having gone through with the first injection on Wednesday. I’m not nearly too boorish or stubborn to deny that I wish that my endo had never called in the script and that I had never followed her instructions. That said, I explained my decision in above posts and felt it to be the best decision at the time. Clearly, it was the wrong choice.
I’ve never been a big fan of my graduate institution, but I do feel safe with their medical services. My GP has somehow gotten me in with one of the best endos in the country a week from Monday.
I have now been injected with one 50mL injection of Test Cypionate (two days ago). I will not be doing another injection until I see this other endo on the 20th. We already have baseline labs prior to the test injection, and they drew labs today. I feel pretty normal right now. I did have a nighttime erection last night.
PureChance, I understand what you’re saying about endos and docs in general. At the same time, I do feel like I have to “play the game” that can get me somewhere. I’m a 24-year-old with no real assets, other than amazing (university) medical insurance and access to the best doctors in the country. It seems like I have very little choice but to use those assets to the best of my ability.
Regarding hematology, my GP said that the hematology bridge is one that we will cross if we have to after seeing the endo. It was very difficult for her to get me in to see this endo, but she said that a hematologist would be exceedingly difficult because of how busy they are with cancer patients.
Im not sure why hematologists see cancer patients–thats usually oncologists…but i digress
Your 50 mg injection wont affect you negatively at all…nothing to worry about there
Keep us posted.
Just FTR, the injections arent the WORST course of action, so dont beat yourself up too much on that. Its just that there is very little reason to shut your own natural production down unnecessarily–I personally feel you should do what you can to recover that natural production through pituitary output if possible…others may disagree
I will post the new lab values when I get them.
Here’s something that I haven’t been able to understand from the stickies: I understand what HcG does and why it prevents testicular organ failure. That organ failure is caused by shutting down the production of LH. What I’m wondering, though, is whether, assuming that my LH value has been this low for 7 years now, my testes might already be in organ failure as a matter of producing testosterone is concerned. I’ve been seen by an urologist who said that I was normal/average, but that doesn’t really have any bearing on whether my testes can produce T.
I guess that the answer is that this question is the purpose of the SERM test and HcG monotherapy.
Per VT’s PM: “HCG, which is known to mimic LH in the leydig cells.”
So, is the best-case scenario that I am on HCG therapy for the rest of my life to mimic the LH that my body does not produce, or is it that the HcG could potentially “kick start” my pituitary gland to start producing LH hormone?
[quote]The3Commandments wrote:
So, is the best-case scenario that I am on HCG therapy for the rest of my life to mimic the LH that my body does not produce, or is it that the HcG could potentially “kick start” my pituitary gland to start producing LH hormone?[/quote]
Its unlikely to happen from the HCG, though I suspect its possible. It is more likely to happen from the SERM as it will wake up both organs. The HCG is really to see if your balls can produce. The SERM is to see if your pituitary can produce (and subsequently your balls as well). You can take the two step approach (HCG then SERM, which is what I recommend) or go straight for the SERM. I like the first approach due to less variables.
But yeah, your best case scenario is that your system reboots itself and you produce naturally again. Second best is that your balls can produce but you have to take HCG to make them produce. Worst case is neither will work and you go on T.
Okay, I have a few questions after having done a bit of reading about the SERMS:
-I assume that when I present the SERM proposal to this endo, I should push for Nolva instead of Clomid due to less sides? I don’t think I fully understand the ramifications of the fact that Nolva “reduce[s] IGF-1 levels.”
-Sorry if this is a thick-headed question, but why do you recommend HcG and then SERM? I would think that since my pituitary is already not producing, the better move would be to see whether the pituitary would begin producing without introducing an exogenous hormone that “replaces” LH…?
Is it because we don’t ultimately know whether I do have primary hypogonadism at this point? Then your point would make sense, as for all we know my long-term secondary hypogonadism may have led to the sort of organ failure that TRT causes due to LH suppression. Then again, it is strange that the urologist found my genitals to be normal if my testicles were in a state of organ failure. One would think that they would have been affected in the manner discussed regarding doing TRT without HcG therapy.
Your testes are not producing any T because they do not have a signal telling them to do so…they are lying dormant…its very easy to overlook this in an exam since sizes and firmness are so variable from person to person.
The reason I recommend HCG first to someone that has such a low testicular output is basically routed in good systems engineering principles. Think of it like your internet signal going down (testosterone output). You have a modem (pituitary) and a router (testicles). Do the FAQ’s tell you to reboot both of them at once? Nope…you first reboot your router to see if that corrects the problem, then cycle power to your modem once you are sure your router is working. Same principle. It is easier to bring one subsystem online at a time than it is to bring online an entire system at once.
You should try to pick up Dr. Shippens Testosterone Syndrome. Great read.
He talks about a clomid stimulation test which I did awhile go. My LH and FSH levels are low as well so I did MRIs to check for tumors (nothing found) and then did the clomid test. It brought my T level to over 700 after a 2 week test.
I read somewhere some researchers gave someone clomid for 5 months to restart their HTPA. Clomid does have some nasty sides so not recommended long term. I remember getting some nasty headaches while doing the test.
Currently I am looking to get HCG to bump up my LH levels which will ultimately raise my T levels.
A Clomid stimulation test is a standard protocol that has been used by
endocrinologists for years to test whether a man’s hypogonadism is
primary or secondary. If the test is successful (i.e., if your T rises
significantly), that means that all of the organs in the feedback loop
(the testicles, pituitary and hypothalamus) are healthy and functional,
but for some unknown reason the system has gone dormant. A
successful test result also means that you are a good candidate for
HCG or Clomid, which in contrast to standard TRT, stimulate your
body to produce its own T. See:
Clomid (Clomiphene Citrate) doesn’t lower estrogen; it “blocks” it.
Estrogen attaches to the receptors in the hypothalamus and that
signals that there’s enough T in your blood, so your body reduces
its T production. Somehow the hypothalamus reacts to E as well
as T. Clomid attaches to these receptors but doesn’t act like E.
I did a Clomid stimulation test in November 1999. Dr. Shippen gave me
100 mg/day (one 50 mg tablet in the morning and one in the evening
before bed) for a week. I took a blood test on the morning after the
last day. My test was successful, in that, my T went from about 200 to
600.
Clomid is most often used to promote fertility in women. Therefore, if
you research Clomid, the vast majority of the literature you find will
discusses the use of Clomid by women rather than men. In fact, when I
went to fill the prescription, the pharmacist was very leery and asked
me a lot of questions before dispensing the drug.
UPDATE, and you guys aren’t going to believe this:
Just got off the phone with my GP. Apparently, my T level last Friday was 650…my understanding is that .5mL of Test Cypionate could not cause that sort of change.
We talked a bit about that, with the GP saying she has no idea and that we’re going to wait to see what the endo makes of this whole mess. I was too shocked by the test level to think to ask about LH and such, which was stupid on my part. Will be getting a copy of the labs either this afternoon or tomorrow.
Any thoughts on this? That means I’ve had three tests: 32, 44, and now 650…
You did an injection of test…of course its going to elevate your levels…i not sure what youre so shocked about…it will be short lived
Well, I guess my shock was that I assumed that a .5mL injection couldn’t have that much of an impact…I guess that was mistaken. My GP probably doesn’t know much about test, which is why she didn’t think one dose could get me up to 650.
EDIT: To be honest, I guess I was also just hoping that perhaps the prior two tests were mistaken (they were measured by the same lab…hoping against hope, I guess). Of course, this would leave my impotence as a total mystery, but it’s not like I feel different physically from last week…so I guess I was just thinking that maybe this whole thing was one big mistake.
So, I guess there was nothing substantial to report after all. Will post the labs when I pick them up tomorrow.
the injection of .5mL - was it 100mg per mL or 200mg per mL?
how many days between the injection and the blood draw?
200mg/mL Two days between injection and blood draw.