Hello all! In the world of warnings about high blood pressure and lots of people having it I feel like I'm one of the few people who deals with chronically low blood pressure that mostly materialized after starting Spironolactone. In my 10 months of being on HRT, spironolactone while nuking my T hasn't been very kind to me, severe constipation (despite trying to counter it with lots of water, fiber, magnesium supplements, and exercise) constant dry mouth, some other minor things but the biggest thing has been total destruction of a stable blood pressure that seems to be getting progressively worse. Almost every day I deal with dizziness/lightheartedness upon standing, mostly minor and goes away after 5-10 seconds but since late fall/early winter it seems to be getting worse and my lightheaded episodes started getting more severe causing me to lose balance slightly, blurred vision, feelings of about to faint but not actually fainting etc...

This past Wednesday however one of my worst fears happened, about 11pm at night I was laying on my bed and go up to go to the bathroom, I didn't get up fast, everything seemed normal until I got to the bathroom..... everything went dark, I heard a loud crash the next moment I was on the floor in severe pain, gasping for air, vision was so blurry and could barely see anything, heart was racing, I was extremely dizzy, took me 10 minutes of struggling to crawl to my phone to call 911 and every 1-2 feet I crawled I fell limp to the ground gasping for more air, finally did get to the phone and of course got to the ER but I truly though I was going to die, I never felt more scared. Turns out in the time it took me to go from my bed too the bathroom my BP crashed, caused me to blackout, I fell gead first into my bathroom wall breaking the wall (Theres a huge hole in my wall) and slamming hard to the ground afterward. I was diagnosed with a concussion, sprained wrist and bruised tailbone, I have no memory of the fall all I know is I went to the bathroom and the very next moment I was on the floor feeling the worst I ever felt in my life.

I was discharged about 5 hours afterward, thankfully no permanent damage on my CT scans or Xrays and of course immediately notified my PCP of the incident and I see him Tuesday but now I'm scared, these 10 months I have been more happy then I have ever been in my life, my appearance in the mirror is finally starting to make me happy etc... but Spiro seems to be destroying my body..... Being in the US Cyproterone is not possible to get due to not being FDA approved, I'm on Finasteride but it's fairly useless as an effective AA, I'm on the wait list for SRS, have all the medical paperwork, letters, etc.. all set and I'm just waiting on hair removal to be done but since I was only able to just start that a few months ago it's still going to be quite awhile before that's all set, and lastly I've been dying to switch to Estradiol Valerate injections for 6+ months now due to it being very effective for many people in lowering T on it's own greatly reducing the need for an AA but due to the damn never ending backorder it's impossible to get around me, I did switch to Cypionate injection about 2 months ago and while I'm very happy overall with it vs sublingual pills, my e levels at the very end of my 2 week injection cycle was 123 pg/mL which is great for being in the female range but I don't think that's high enough to effectively lower T on its own.

I really don't know what to do.... Of course I plan to bring all of this up with my PCP tuesday but it just feels like I'm screwed with no alternative options, I have no chance at living happily without the help of the AA but it feels like it's increasingly destroying my body and makes me worry how much more my body can handle, no matter what I try to do to raise my BP nothing seems to work effectively, always hydrated, I eat about 6,000mg of sodium a day to try and raise my BP and negate what the spiro flushes out but that's often not enough bleh Anyone have any tips on raising BP or knowledgeable about any other effective AA's that are available in the US? 

Little bit of a delay looking up some information. I transitioned without a blocker so it can be done though you may experience a return of the dysphoria. It's possible your dosage can be reduce and if so that may help with the blood pressure issue. I have naturally low blood pressure so I understand what you are going through and I have to be careful with some of my activities not to approach black out stage.

Now for the good stuff. I don't know about the costs or insurance coverage on these medications but Suprefact and Androcur are both used by members located in the United States. Spiro is extremely low cost and that's why it's preferred but  it's not the only drug that will do the job. Blockers are used to tread prostate cancer so there is an interest in developing more alternatives to the current drugs. 

IMO the obvious way for getting rid of spironolactone adverse effects you are experiencing is to stop taking it, say for 6 months. If it appears that an estradiol only based HRT is not good for you to have a satisfying feminization, then you might try reintroducing an AA such as bicalutamide (very few side effects) or cyproterone acetate (more possible adverse effects). Talk to your doctor(s) as soon as possible.

Maybe cut back to half dose of Spiro. In my case, it's really effective at reducing T. In fact, I'm thinking of trying a lower dose. Other things that would occur to me is to ask whether you are on any other meds that may interact with the Spiro as well as whether you may have lost weight. My wife was on two BP meds and started to notice very low BP symptoms like you. Turned out she lost weight and one was no longer needed (and the dosage is a function of weight). Anyway, hopefully your docs will get it under control. Good luck.

I suspect that despite E levels measured at the end of your cycle, your E. Cypionate may be enough to effectively lower T on its own. If it were me, I would try that and completely stop Spiro. There are alternatives, as indicated above, the best of the bunch, IMHO, being bicalutamide and GnRh agonists like Suprefact due to less potential side-effects. These can be expensive though.

I am sorry for what happened and hope you feel better. Glad it turned out the way it did, could have been worse. Take good care of yourself, and let us know how it goes after your discussion with your doctor.

Thank you all for the replies! Glad to know there are potential other methods out there that are effective like  Suprefact  and bicalutamide, will certainly bring them up to my PCP tomorrow to see if any are a possibility and see if any are covered by my insurance as I'm very low income and can't afford them if they are as expensive as mentioned. If none of the above are available to be prescribed then I'll ask about potentially increasing my estrogen dose to see if that on it's own can act as an effective AA and gradually lower my Spiro dose to see if my T levels stay where they should be. So far in the 10 months on HRT I haven't experience any negative side effects from estrogen, am 25, not carrying much extra weight, no history of family blood clots, liver tests perfect, and try and walk 3-4 miles 3-4 times a week so my risks for adverse effects from a potential estrogen increase seem to be low but I'll be sure to discuss all of it tomorrow to see what options I have.

Since a couple of you mentioned Androcur and to my knowledge that's the brand name for Cyproterone which isn't approved in the US, can doctors still prescribe it even if it's not FDA approved? Or is there some huge workaround to getting it if some in the US are using it?

Thanks Kay, pain certainly stinks >_< They gave me some extra strength Tylenol but it's hit and miss so far and try to use it conservatively as don't want to overwork my liver. Will be sure to post how the visit with my doctor goes!

Quote from: DuchessBianca on March 20, 2017, 07:15:54 PMSo far in the 10 months on HRT I haven't experience any negative side effects from estrogen, am 25, not carrying much extra weight, no history of family blood clots, liver tests perfect, and try and walk 3-4 miles 3-4 times a week so my risks for adverse effects from a potential estrogen increase seem to be low but I'll be sure to discuss all of it tomorrow to see what options I have.

I have several times mentioned the studies showing that high E levels when bio-identical E is administered, especially non-orally, pose very little risks. These studies sometimes included individuals (men and women) much older than you are, up to 91 yrs old. Just think of pregnant women who have levels as high as 75,000 pg/ml and yet risk of DVT is only 0.1%.

I, myself, am older than you are and have been on injections for about 2 years with levels of E2 between 1,000-4,000 pg/ml. Clotting times were measured on several occasions with results coming back, again and again, as normal. I also have no history of blood clots and I am much less active than you are.

Regardless, I suspect that it won't take a lot of E. Cypionate to effectively suppress T and maintain it in female range. Let's see what your doctor says and thinks. You can always ask them to measure your clotting times so they are reassured and anything else they wanna measure.

QuoteSince a couple of you mentioned Androcur and to my knowledge that's the brand name for Cyproterone which isn't approved in the US, can doctors still prescribe it even if it's not FDA approved? Or is there some huge workaround to getting it if some in the US are using it?

I believe it can be requested by the doctor for special cases. Have heard of a few women in the US being prescribed this anti-androgen.

QuoteThanks Kay, pain certainly stinks >_< They gave me some extra strength Tylenol but it's hit and miss so far and try to use it conservatively as don't want to overwork my liver.

Why Tylenol? How can it help relieve the symptoms you experienced and associated with low blood pressure? I'm just curious, I don't understand.

Quote from: KayXo on March 20, 2017, 07:38:52 PM
I have several times mentioned the studies showing that high E levels when bio-identical E is administered, especially non-orally, pose very little risks. These studies sometimes included individuals (men and women) much older than you are, up to 91 yrs old. Just think of pregnant women who have levels as high as 75,000 pg/ml and yet risk of DVT is only 0.1%.

I, myself, am older than you are and have been on injections for about 2 years with levels of E2 between 1,000-4,000 pg/ml. Clotting times were measured on several occasions with results coming back, again and again, as normal. I also have no history of blood clots and I am much less active than you are.

Regardless, I suspect that it won't take a lot of E. Cypionate to effectively suppress T and maintain it in female range. Let's see what your doctor says and thinks. You can always ask them to measure your clotting times so they are reassured and anything else they wanna measure.

I believe it can be requested by the doctor for special cases. Have heard of a few women in the US being prescribed this anti-androgen.

Why Tylenol? How can it help relieve the symptoms you experienced and associated with low blood pressure? I'm just curious, I don't understand.

Hello Kay! I'm not worrying about the clotting risk, I just meant that as more of a reasoning why if an increase in E is granted to try and further suppress T since I'm clearly on an effective feminizing dose already that there should be little issue in my doctor going such a route if it's decided as the best option.

That's good to hear! I thought since it wasn't FDA approved that meant it couldn't legally be prescribed but I'll certainly inquire about it.

Oh the Tylenol is just to help relieve the pain I'm in from my concussion, sprained wrist and bruised tailbone, got quite a nasty lump on my forehead so been dealing with major headaches, wrist is about 80% better so it's good but my tailbone is by far the most painful part as it hurts to walk/sit or lay down. Was told by the ER and by my PCP when he called to check up on me the next day not to take ibuprofen since it can increase the chance of bleeding/side effects and such with my concussion. The blackout didn't last very long but my body is pretty beat up from the wall/falling down hard >_< At least I'm getting a taste of what the first month after SRS will be like though, I hear it's quite painful and uncomfortable for many with sitting and such, guess I'm getting some early simulation training #brightside haha

Edit: Oh! Kay before I forget, can't get into detail with dosages but the maximum "safe" dose that is mentioned in the guidebook of the Facility I go to is double what I take once every 2 weeks. If I/my doctor do chose the option of increasing my E  to lets say that max dose if the other forms of AA aren't an option or are too expensive to try and lower my T that way since you seem very knowledgeable on the subject what do you think might be effective, taking the increased dose once every 2 weeks, or splitting that dose in half (essentially my current dose) but inject once every week. Of course I'll bring it up with my doctor but I was curious if one method could potentially be more effective then the other with Cypionate for the purpose of lowering T. Thanks!

I honestly don't know why orchiectomy isn't more commonly offered as an alternative to AA's.
No pills,  a relatively simple surgery  for  most surgeons and could be scheduled by providers in a matter of days if it only it could get approved.

Quote from: Jane Emily on March 21, 2017, 12:49:08 AM
I honestly don't know why orchiectomy isn't more commonly offered as an alternative to AA's.
No pills,  a relatively simple surgery  for  most surgeons and could be scheduled by providers in a matter of days if it only it could get approved.

The primary reason is it takes as much effort to get as GCS. You need the letters and may need RLE before being approved. The secondary reason is some surgeons will not do GCS if the person has had a orchi. Others require the correct placement of the incision so the tissue is usable.

Quote from: Jane Emily on March 21, 2017, 12:49:08 AM
I honestly don't know why orchiectomy isn't more commonly offered as an alternative to AA's.
No pills,  a relatively simple surgery  for  most surgeons and could be scheduled by providers in a matter of days if it only it could get approved.

I've actually thought of that a bit, my insurance covers SRS so I'm sure that would be covered too considering SRS is just an easy term used to call a combination of multiple surgeries, as well as since I have ALL medical requirements completed for SRS (Just waiting on hair removal which will be about 6ish months as a very low income (Under $10k a year) transitioner I had to choose face or genitals to start first when I started HRT last year and the face obviously was more important) and I don't hair removal is required at all for an orchiectomy, however like Dena had mentioned my worries over how it might impact SRS later on and the fact that at present I don't have a ton of donor material anyway I don't really want to risk it especially since my SRS should be scheduled withing 8-12 months.

Just got out of my Doctors appointment, unfortunately the options given to replace Spiro weren't available however my Cypionate dose was increased by 20% and Spiro dose lowered y 1/3rd. In one month both levels will be tested and if my T comes back in perfect range it will be reduced once again and just repeat to try and get to the lowest effective dose needed for T suppresion. I also requested to split my new Cypionate dose in half and inject weekly, my mind likes to worry (irrationally) against science at times that the injections aren't working despite perfect blood levels so once a week eases my mind haha

Hopefully the above works in reducing my nasty side effects and just have to manage to hold out 8-12 more months then I can permenantly get off Spiro!

I really hope reducing Spiro will prevent any of this from recurring again. Crossing my fingers for you. I think instead of  focusing on levels, it's best to rely on physical cues such as feminization (breast growth, skin texture, body odor, hair growth, etc.) and increased libido to figure out if your T is too high or not suppressed enough. Signs of too much T would result in very oily skin, pimples, hairs on the body becoming coarser and growing faster, scalp hair loss, face becoming more angular, etc.

As far as perfect blood levels, I wouldn't personally rely on those either as we all vary so much in our requirements and no one can know in advance what these are. Levels also fluctuate in time. I am now on Oestrogel (vs. EV injections) with much lower levels of E2 and yet my breasts are growing again and I feel better. Go figure! Let your body and psyche be the judges as to whether or not what you are taking is optimal for you.

Just my 2 cents after being on hormones for more than 10 yrs...

I am having a Orchiectomy  beginning of April to reduce or eliminate Spiro. I hope it works because I want to have end of the year GCS, finally.

Why not wait a little longer and just have one operation instead of two in the same year?