I'm lost...

[Felly]

So I called my endo two days ago asking him to raise my spiro dose. And today a nurse called and said that raising it would cause heart failure so I got a no-go there. Thing is, I fear my current one is too low.

I was on Androcur for almost 1,5 years but it did nothing to help my transition, only making me end up with menopausal syndromes, which by any means led me to almost do "that".

Now I'm not sure what to do anymore. I've been on Spiro in a little over 1 month now with no changes whatsoever, and I'm also on E for those wondering  (a healthy dose to be more exact). So what do I do now? Any suggestions?

Hair is growing back in several places that were only sparse while on Androcur. I fear now that I will revert back and hair loss will continue at this rate.

<dosage removed>
A month is too short a time hon!

Cindy

[Catherine Sarah]

Hi Felly,

In answer to your question, what do I do? Simple answer. Visit your Endo and give him the full story about hair growth etc. Under no circumstance, raise your medication.

Apart from Spiro & E, are you on any other hormones? What are your blood results saying? Are you on Progestrone ?  These are the things you need to be discussing with him.

If you are not getting the answers you need, perhaps it's time to find someone who can give you the answers.

Huggs
Catherine

[EllieM]

Ask your endo about Suprefact (buserelin acetate) nasal solution. It's a slightly different approach, it supresses the production of testosterone by mimicing the actions of gonadotropin releasing hormone. As Catherine said, this is an issue you need to take up with your doc. You've probably heard this a thousand times, but I can't say it enough. You can't mess with this. The endocrine system is a complex puppy and if you upset it, it could (like the Harley Davidson manual says) result in serious injury or death.

[KayXo]

My feeling is if you've had no changes on Spiro and have experienced menopausal symptoms on Androcur, then most likely your dose of E is inadequate (too low). Menopausal symptoms indicate a lack of sex hormones; Androcur only reduces androgen...estrogen is needed to replace it. Not enough E and you get menopausal symptoms.

I don't know how much E you are taking but at your next meeting with doc, consider increasing the dose perhaps, explain to him your concerns clearly, your symptoms. A healthy adequate dose for one may not be for the other. If you are taking E orally, then maybe your metabolism is such that very little enters your circulation so that non-oral could be an option. These are points that should be taken up with your doctor. I hope you feel better soon. 🙂

[Felly]

Androcur lowers estrogen as well. As for my current dosage of estrogen, well it's not something I wanna raise and I mean it.

I've even tried tried IM which barerly gave me any results (=low values). I guess I'll have to get my bloodwork done before I get an appointment (as getting one here takes x months here).

[EllieM]

Felly, I'm not a doctor (I don't even play one on TV), but it would seem to me that a different approach may be required for you. Both Androcur and spironolactone operate as steroidal antiandrogens blocking testosterone. Spiro is less effective than androcur in that respect, not really the point here though. There are other agents which actually supress the production of testosterone, which may be a more effective course of treatment for you. Please note, I am not prescribing here, I am merely suggesting an alternative that you could explore with your endocrinologist. Unfortunately, we were born with contrary gonads so there is no perfect solution. I have had good results with the coctail my endo put together for me, which includes Suprefact.

That being said, Maybe you need to give it a little more time. Quoting Cindy here,

A month is too short a time hon!

[/font]

[KayXo]

Androcur lowers estrogen as well.

The only way I see Androcur lowering estrogen is since it is a progestin, it increases conversion of estradiol, the strongest of all three estrogens, to estrone and also downregulates estrogen receptors making the body less receptive to estrogen. Unless you can cite a study, document proving that Androcur actually lowers estrogen, I have to disagree with this statement.

[KayXo]

In addition to Ellie's recommendation which I also think is a good idea (but I'm not a doctor, just my opinion and trying to help out), bicalutamide (Casodex) is another option. It is a NON-STEROIDAL anti-androgen, with pure anti-androgen action and quite safe, with low toxicity, especially at doses required for our purposes. It only blocks androgen, DOES NOT suppress it. But its blocking power is very potent so much so that despite resulting in an increased level of T (and estrogen, btw!), there is decreased masculinization and feminization. Gynecomastia (breast growth) and breast pain is quite common (more common vs Spironolactone or Androcur) in those men taking it for prostate cancer. But, bicalutamide doesn't enter the brain and as such, sex drive is maintained...and it appears that spontaneous erections aren't really that much affected. If you don't mind either, then this could be an option for you. It's also quite expensive (like Suprefact, I think) but if you have coverage/insurance, then it's fine.

Hope you find a solution to your problem promptly. 🙂

[Felly]

I'm no doctor either but I'm pretty sure Androcur's a antigonadotropin, which not only lowers testosterone but also estrogen unless I'm mistaken here?

Even at low dosages, Androcur was showing it's power on me by countering the effects of my HRT for estrogen (I even doubled my dose twice) and it still stayed the same.

My endo thought it was weird, and he's the freaking one who's on top of the list here. Anyhow, I've called one of the nurses so I should get the paper and whatnot so I can have my blood checked in a week or so. Talking to my endo directly would take weeks/months here. (And I ain't got no time for that!)

P.S: I'm not taking any progesterone either since both andro/spiro stimulates it so I never saw the need for it.

Edit: @ KayXo - I havn't had an erection for a little over 5 years now and that includes sexual thoughts more or less as well. Just imagen being on Androcur and nothing else (or stuff that didn't work as intended) for that time... It destroys your mind.

[KayXo]

I'm no doctor either but I'm pretty sure Androcur's a antigonadotropin, which not only lowers testosterone but also estrogen unless I'm mistaken here?

I see what you're saying. But, in genetic males, testicles (male gonads) produce mostly androgens and very little estrogen so taking Androcur will barely make a difference in terms of estradiol levels but it will for genetic female whose ovaries (female gonads) mostly produce estradiol and little testosterone. Progesterone production/levels will also be reduced in both, as a result, with a more pronounced effect in females, of course.

Also, since androgens convert to estrogens, Androcur's suppression of androgens will result in lower levels of E but again, the reduction won't be significant as E is already quite low in males.

Even at low dosages, Androcur was showing it's power on me by countering the effects of my HRT for estrogen (I even doubled my dose twice) and it still stayed the same.

I know that in rats/mice, Androcur is androgenic (and anti-androgenic) at the receptor level, and also exerts glucocorticoid activity which inhibits breast growth, even in the presence of estrogen unless high E is administered. That's the only thing i can think of. Spiro also exerts similar androgenic activity at the receptor level in these animals. I wouldn't know how the doses used in those studies compare to what we take.   

P.S: I'm not taking any progesterone either since both andro/spiro stimulates it so I never saw the need for it.

Yes, they are both progestins with progestogenic activity. But because they are progestins, they are also mildly anti-estrogenic in that they increase conversion to lesser, weaker forms of estrogen and reduce the number of estrogen receptors. Both bicalutamide and analogues, like Suprefact, don't do that. Bicalutamide is also a stronger blocker of androgen than both CPA and Spiro with a much longer half-life and it seems, a better side-effect profile than CPA (androcur).

[l0nghairdontcare]

Now I'm not sure what to do anymore. I've been on Spiro in a little over 1 month now with no changes whatsoever, and I'm also on E for those wondering  (a healthy dose to be more exact). So what do I do now? Any suggestions?

Hair is growing back in several places that were only sparse while on Androcur. I fear now that I will revert back and hair loss will continue at this rate.

There is no way that hereditary hair loss can be reversed to that point in just 1 month. It takes at least 6 months for changes to scalp hair to improve in any meaningful way. There is no possible way that you could be noticing any cosmetic changes to scalp hair in less than that time.

Also the use of an anti androgen alone will not halt hereditary hair loss. You must also block DHT with Finasteride or Dutasteride. You should also use Nizoral shampoo once a week since it it a topical anti androgen. 1% or 2% if you can but you will need a prescription for the 2%. You should also rate yourself on the Norwood Scale. Even then as long as you are not castrated it is likely that it will continue. Even after castration you need to continue your treatments. It is not as simple as you are making it seem. I am not trying to cause you to panic I am trying to inform you and help you save your hair.

There is no cure for genetic pattern hairloss so any treatments you use will have to be continued for the rest of your life.

@kayxo

are you the same "Kay" from tgboards? 😮

[KayXo]

Yes lol...Tracy?? hahahaha  😀

[Eva Marie]

I think instead of all of this guesswork with trying this or trying that you should first get a blood test to determine exactly where your hormone levels are, and then work with your doctor to make adjustments to your meds from that point. If the doctor is resisting changing his treatment plan and you feel that plan is wrong then go find another doctor, preferably one that has experience with treating trans* patients. Ordinary GP's don't necessarily have the experience and training for the treatments that we need.

[MaryXYX]

I'm taking Finasteride to combat hair loss.  In my case it's already gone too far, but there are some feminising side effects so I'm going to continue with it.

There is quite a strong feeling that Androcur is dangerous.  It isn't used at all here.  I was taking Spironolactone for a while but when I started prescription meds I was put on to Decapeptyl because the endo here believes Spiro restricts breast growth.

The appropriate dose of E is quite hotly debated.  I was getting breast growth when I was self medding but now I'm on a prescribed lower dose.  The endo says my blood E levels are withing the normal range (normal for who?) but I'm not getting any development so I say they are too low.  It's also said that too high a dose leads to a permanent stop in development, I don't have any references to back this up though.

I think the conclusion is, take great care if you are thinking of altering your dosages yourself, but by all means argue it out with the doctors.

[Felly]

My current Endo is the head of the department for everything regarding hormones/hormone treatments and such (even TS patients). There is really no other option.

Here in Sweden, 99% of the time they go with Androcur + your choice of estrogen treatment (pills patches etc). Think of it as the gatekeeper. And if they say no then you're pretty much fracked. There is no other doctor or whatever. It's all in the system, they will only redirect me back if I go elsewere.

Edit: he was even sceptical when I wanted spiro instead.

[KayXo]

There is quite a strong feeling that Androcur is dangerous.  It isn't used at all here.

But used in many countries like Canada where I live and available in all European countries. I think the USA may actually be the only country where it is prohibited.

Regardless, I have taken it and don't like it much for its tendency to sometimes cause mood disturbances in some, increase prolactin too strongly potentially increasing risks of pituitary tumor, effects on the adrenal gland (whether significant or not open to debate) and cardiovascular risk (slightly increases risk of DVT). I think there are better alternatives. 

I was taking Spironolactone for a while but when I started prescription meds I was put on to Decapeptyl because the endo here believes Spiro restricts breast growth.

Even though I am skeptical about Spiro stunting breast growth, I think a LhRh analogue (Decapeptyl) is better in terms of side-effects.

The endo says my blood E levels are withing the normal range (normal for who?)

I agree. There is no such thing as normal, especially if we consider how much levels fluctuate in genetic women...and that everyone's sensitivity to hormones differs. Also, women developed during puberty when growth hormone levels were much higher and at a much earlier age. Like comparing apples and oranges. There is no agreement on what is normal, this figure varies from one doctor to another...there is no science behind it, just assumptions based on nothing but suppositions. The dose that is effective for one may not be for another. Feminization and well-being are the criteria that should be used to evaluate if dosage is effective or not. Not a number, and besides, blood levels fluctuate as well so taking your level at one point in time is no indication of what is really going on in the bigger picture of things. One would have to take a blood test several times a day, then do the same a week later, and perhaps a month later to get a more reliable picture.

It's also said that too high a dose leads to a permanent stop in development, I don't have any references to back this up though.

Hearsay. What is too high of a dosage? Pregnant women have very high levels of estrogen and experience increased breast growth. Some transwomen need high doses for adequate feminization. This is not to say that lower doses may not be effective in some, just that higher may also be needed in others and to justify not increasing dose on the basis of such a blank statement is not right. 

I think the conclusion is, take great care if you are thinking of altering your dosages yourself, but by all means argue it out with the doctors.

Yes, with science, with research, with solid arguments. If they don't listen and insist despite conflicting evidence, find a new doctor. 🙂

[KayXo]

My current Endo is the head of the department for everything regarding hormones/hormone treatments and such (even TS patients). There is really no other option.

Here in Sweden, 99% of the time they go with Androcur + your choice of estrogen treatment (pills patches etc). Think of it as the gatekeeper. And if they say no then you're pretty much fracked. There is no other doctor or whatever. It's all in the system, they will only redirect me back if I go elsewere.

Edit: he was even sceptical when I wanted spiro instead.

You should suggest to them bicalutamide (Casodex) and ask why they don't use this instead as it has shown less cardiovascular toxicity in prostate cancer patients vs. Androcur. There are also LhRh analogues. I think I also posted studies on how parenteral estrogen (Estradurin, polyestradiol phosphate) in high dosages was safe in prostate cancer patients. There are several studies, lots of them from Scandinavia. I could privately send you those studies if you want. Also, a couple of studies on the use of patches. Since these studies were done in Finland and I believe Sweden (or Norway, Denmark?), they may  influence them more. Who knows??

[Felly]

I've been battling HRT since my DIY 5 years ago and all I can say is now; if nothing works I might as well end it all together.

I don't see the point in continuing if I can't even solve something which apparently seems to work as intended for everyone here.

Stay strong and battle it you say? Seeing how things are now, another year will pass with no progress whatsover and I'm getting closer to 30. I hope my bloodwork will shed some light into this, because if doesn't, then that's it I guess.

[Hikari]

I would be curious as to why they would even go with spiro if you dose in less than one month on it would be at risk of heart failure if increased. Even in the DIY community many people will start at small doses of spiro to see how well it is tolerated and/or how effective it is. It would seem abnormal to me to start at such a high dose as to be dangerous to increase it any.

My advice would be to wait and see if spiro starts being effective and if it doesn't work for you perhaps start leaning on your doctor heavily for a change to something else.

[Felly]

I asked for Spiro specifically because of it's wide use in the states. I was on Andro for 1,5 years up until late november '13 with no changes since both my T and E values were way below than average, meaning close to zero/below menopausal values.