Susan's Place Transgender Resources

Hey Everyone,
Would like to get some feed back from anyone that has some experience with side effects of the above medications.
I started a really low dose of estradiol in may, At that time before I started my testosterone level was 546.  After three months it was tested again and my level was 326. So I my dosage was doubled at that time. Which from my understanding is about mid level dosage. At the beginning of November testosterone was testing about and level had increased to 758. Which I could already tell because I was feeling angry again all the time.

My doctor increased the estradiol dosage again and started me on Spirolactone. I first increased my estradiol dosage over a few weeks until it was the new dosage amount and then started the Spiro real slow, increasing the dosage over about three weeks until at the dosage.
At about two weeks in I started feeling off, I knew something was not quite right but figured it was just getting used to the testosterone lowering and the new medication. I have Kaiser insurance and they are great with trans patients, I had an appointment my gender therapist at Kaiser , but at this time was feeling so bad I could barely move I was considering going to the hospital, not only was I feeling physically terrible, I was getting waves of depression and starting to have anxiety attacks. But I decided to go to the appointment anyway.
    As soon as i walked in and and therepist looked at me she called two nurses from another kaiser building to examine me immedialty. After they showed up they immediatly walked me out the therepist office across the parking lot to my doctors office and straight in to be examined by the doctor right then.
   I knew i felt bad but i didnt realize how bad i looked until seeing the faces of the therapist and nurses. Now with being rushed around i was really starting to get nervous.Once the Doctor arrived she ordered blood work, an ekg and immediate IV fluids.
EKG was normal, my electrolytes were good, pottasium was still in the safe zone but i was so deyrdated that it was a threat to my health. I had lost 9lbs in two weeks on the spiro , Went from 148 to 139 in that time.
I was real careful with electrolytes but i guess i was still not enough fluids.
So i was sent home after fluids and they felt i was ok to drive, they kept me there about 8 hrs .
   Told me to not take the spiro for a few weeks and then start much much slower this time.
So for the next week and half i was hafing the worst deppression and anxiety attacks and top of that hot flashes to the point i thought i would spontaneously combust.
     All that subsidded gradually over about a week or so.
At about two weeks after i was feeling much better and decided to start the spiro real real slow.
I cut one of the lowest dose pills you can get in half and took that at 6am, was a little nervous for a few hours because of what had happened before. I soon forgot i even had taken the spiro. Got in bed 9pm and turned off the light closed my eyes for about five minutes when BAM , a huge anxeity attack and the depression started. I did manage to get a few hours sleep but the next morning i was so  depressed i could barely move. It was the dangerous type of depression. It lasted until the afternoon that day and subsided. I have not taken any spiro since and have had no issues since.
   I do not have depression like that normally.
So after the long winded story above i would like to ask my Question lol

My doctor as suggested i stay away from Spiro because i had such an adverse reaction
She has Suggested i try either Flutamide or Finesteride as and alternate for T-blocker

Has anyone taking these medications and had depression or anxeity attacks as a side effect?

Flutamide says it can give you liver damage and juandice what are your thoughts?

She is asking me what i would like to try but i want to make the safest choice in this decision

Thank you  for reading this and any posts on the subject would be great

Paige

Wow. That's so scary! I'm sorry you've had such a difficult time. I've been on Spiro at a rather high dosage (the second highest dosage recommend from what I've seen elsewhere) for 10 months.

I've never had any side effects other than mild dehydration. I have had something happen, but cannot positively say that the Spiro or estrogen pellets are the cause.

Two months into HRT I developed a rash on the palms of my hands. After several months I finally saw a dermatologist that diagnosed it as pustular psoriasis.

I've been on an HRT regimen that includes Spironolactone for just short of 2 years. Fairly early on I had a bout of severe dehydration.  I live in Florida and often work outside in the summer which you may know can be VERY hot and humid.  In this case dehydration was so serious I had to be taken to the emergency room.  I felt faint, weak and couldn't seem to breathe normally.

After several tests and 6+ hours, the diagnosis was severe dehydration ( had an inkling but didn't know that for sure previously).  Up to that point I had never paid much attention to my hydration levels and never had a problem. I am now fanatical about hydrating and haven't had any further issues with that problem. However I really enjoy red wine and there can be problems associated with alcohol consumption while taking Spiro. I learned that the hard way and now still enjoy it but with much greater care and moderation.

That's the only issue I've had and I take estradiol, finasteride and Spiro.  Depression and or anxiety are not listed as potential side effects of any of the above three Meds in any of the accompanying literature I've seen but I'm not a qualified medical professional.


I find it a little worrisome that your Dr. Is asking YOU what "you want to try". Is your doc an Endo?  Does she/he have LOTS of experience with Managing transitions

Bottom line: effects of these powerful hormones on the body are very serious and must not be taken lightly.  STRONGLY URGE you to consult with the most highly qualified Endo/doctors you can to get your issue understood and sorted out.

Ask to take Bicalutimide instead of Flutamide.
It has a much easier side effect profile.
It doesn't reduce Testosterone, but it blocks the receptors.
Flutamide is some nasty stuff and isn't prescribed very much for trans medicine anymore.
Finasteride isn't a true T-blocker. It's a DHT inhibitor.
It can help with some things, but it too is linked to depression, low libido and sexual dysfunction.

*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licensed medical professional ***
   

I have congestive heart failure and have been on Spiro for about 25 years. It's first effect on me was burning nipples. After about five years it started to effect my sexual function and it has been depleting ever since. Meanwhile I was developing man boobs. A couple of lumps actually. About 18 months ago the dosage was doubled as I began HRT.  At this point my testicles have gone from walnut size to pecan size.

I was on finasteride for only a couple weeks before it started effecting potassium levels which are very important for a heart patient.

That's my experience, your's may differ.

I'm on the highest spiro dose.  In my experience if you drink a lot of water and eat more salt it doesn't cause any problems.  I work out daily here in Georgia including runs outside in the summertime.  When it's hot I need 20+ glasses of liquid and 6000 mg of salt daily.  It's somewhat less in cool weather.


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After a month on lowest dose of spiro I had a bout of severe dehydration too - spent a whole day describing what I was feeling to nurses, who were for some reason baffled -  I didn't use the magic word "thirsty" so they were at a loss; like the OP I just didn't feel especially in need of guzzling down fluids.  Being in alright shape but not a fanatical fitness person or involved in much of anything in the way of manual labor besides playing the accordion I just don't work up much of a sweat, so didn't have familiarity with what it feels like to be dehydrated - and I had no idea you could be dehydrated without feeling thirsty.

My circulatory system felt like it had turned to mush, especially in my lower extremities; the only remedy was to lay down flat on my back.  I toughed out a whole 8 hour shift at work like this, managing to get up when needed; after trying in vain to get an answer from all those nurses I staggered up the road to an urgent care clinic, I had to lean back in the driver's seat as far as possible to keep from passing out, and the really condescending doc identified my problem, which I'd already managed to solve by rushing over to Subway, back to the hospital ASAP ("If you're not back in 15 minutes you'll lose your spot"), wolfing down food/drink.  Voila, feeling OK now.  Those salty chips tasted so good.

Now, I'd been drinking my usual quota of fluids all this time, and felt fine, far as I could tell, and adding the extra salt everyone says is critical.  Things did seem to settle down after this episode.  I'd already paid a visit to the ER for another problem, if I'd wimped out and gone back I'd have had to wholly abandon HRT and transition, the cost would have just swamped me - I've only recently managed to pay off the cost of the first visit, I'm a low income earner.  An HRT FAQ would be invaluable, there are so many little details like this that could be easily avoided, and the documentation that's out there is so spotty. 

Spiro has never made me urinate constantly like it does to some, either.  YMMV as ever.  Upon waking I drink a whole pint of water, with some salt thrown in, and pee a bit - my prostate has shrank so I'm never woken up in the middle of the night having to go.  Through the day I drink another pint of water every other hour, I treat it like another med. 

At first I had fairly constant leg cramping, but almost never now - I don't think I excrete much salt, unlike some.

I don't pee all that much either.  My theory is that after a while the body compensates for the spiro effects and doesn't lose as much water as it does at first.


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Quote from: Deborah on January 23, 2018, 07:47:15 PM
I  When it's hot I need 20+ glasses of liquid and 6000 mg of salt daily.  It's somewhat less in cool weather.


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oh dear god, yes.  You sound just like me  in NC during the summer.  I swear I need a glass of water just from going out to check the mail hahahaha

Thank everyone for your responses ,

If my side effects were just the dehydration i would go back on on the spiro , but the main reason im looking for an alternate is because of the Depression and severe anxiety that came to the point of suicidal thoughts. I do not experience that kind of over powering depression with thoughts of ending it all. That i do not want to feel again. And it happened when i tried the super low dose a few weeks alter again.
     i do get down and have a mild depression and some anxiety from time to time but not to the extent the spiro caused it.
   So im trying to figure out what to do about these new suggestions from the doctor.After looking up Flutamide it seems like a dangerous medication that no one should be put on for a long term. If you have terminal cancer it would not matter much your just trying to extend time but i dont want to take something that destroys my healthy liver.

       I came across the bicalutamide yesterday while looking up the Flutamde. It seems to be alot safer but still can damage the liver and i want everything below to shrink not to have morning erections again. Want the testes to shrink not keep working like normal.

Im upset that spiro had the side effects for me it seemed like a somewhat safer option

    Anyone taking bicalutamide or finesteride for thier HRT that can tell me thier experiences with the medication would be greatly appreciated.
   

Mikaela thank you for your response I would have responded to your pm but I do not have enough posts yet

Paige, I have Kaiser insurance  I have a  Kaiser Primary care doctor that has a lot of experience with  transgendered patients, but I also have an endo with Kaiser, she has years of experience with trans patients. They send most trans patients to her if they are within a two hour drive. I started this journey in May with the endo. She seems to give some options when an issue comes up because what is good for person is not for another. Also she told me not everyone has wants exactly the same thing from their transition.
  But on the other hand she has so many patients if you don't speak up you can get lost in shuffle.

Quote from: Brie B on January 24, 2018, 05:51:39 AMAnyone taking bicalutamide or finesteride for thier HRT that can tell me thier experiences with the medication would be greatly appreciated

I took both pre-op and personally, would never take flutamide because of those potential side-effects re: liver. Finasteride did very little, I found and I'm glad I stopped it after later finding out it could potentially lead to anxiety and depression, even after discontinuation, in some.

Bicalutamide was fine, no problems, as far as I or my doctor could tell. I only took it for a few months. This is one anti-androgen I was quite comfortable taking. On the whole, it seems fairly safe and very rarely associated with liver complications in *older* men. My personal favorite but I'm post-op so no longer an issue.

Best of luck in finding a solution with your doctor that works for you. :)

Quote from: Brie B on January 24, 2018, 05:51:39 AM

       I came across the bicalutamide yesterday while looking up the Flutamde. It seems to be alot safer but still can damage the liver and i want everything below to shrink not to have morning erections again. Want the testes to shrink not keep working like normal.

There's no guarantee that anti-androgens with remove morning erections.
There is another member on here who is on high dosages of Estradiol and quite high dosages of spironolactone and she complains about having morning wood every morning still.
Admittedly, I still get them occasionally and I've been on pharma HRT for a year and a half now, with my last tested total T level was at 14 ng/dL.

The other thing to consider is transitioning without an anti-androgen.
There are members on here that transition on Estradiol alone.
It takes a bit longer for the T to suppress, but it does.
Anti-androgens are really only supposed to be prescribed to give the Estradiol a head start, and once your body switches over to the new sex hormone, it (usually) stops triggering the testes to produce their sex hormones.
Transitioning on E2 alone requires higher steady dosages though.
This is probably best accomplished with inter muscular injections of Estradiol Valerate or Estradiol Cypionate.
If your doctor is "really" knowledgeable in trans medicine, she should already know that though. If not, maybe it's time to educate her. ;)

*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licensed medical professional ***