Off T, negative side effects - I'd like to hear from those whose dose was wrong

[blackcat]

I would love to hear ANYONE'S experience related to dealing with messed up T levels and possible aromatization. I'm still trying to figure out WTH just happened to me. I had to stop T.

I was on T for three months, low dose gel. My doctor fully expected to double my dose after the three month mark because most guys' periods don't stop until then. Everyone told me gel was slower, weaker, etc.

The first 2.5 months were THE ABSOLUTE FREAKING BEST months of my life. I could write 400 pages about how happy, alive, and finally at home in my body I felt. It was the missing puzzle piece.

Around 2.5 months, I started waking up into panic attacks - sometimes full blown night terrors - in which I'd wake myself up, sitting up and screaming.

I attributed this to stress. My ex had just moved out, there was the Trump memo, and I started coming out at work to clients (my income depends on clients; and for the record, so far all of them are cool).

At the 3 month mark, my panic attacks were getting worse. I'd wake up with a racing heart, have hot/cold flashes, I would get so cold that my entire body would tremor uncontrollably and I'd have to get under four blankets to warm up. My entire digestive tract would wrench, sometimes aching BADLY. I'd get muscle flutters that ping ponged all over my body. The diaphragm flutters were scary, weird, and painful.

And this only ever happened at night, so I couldn't just go to a clinic to get checked out. I went days without sleeping. I began to dread feeling sleepy because I didn't know how many times I'd wake up at night feeling sick, and these episodes usually lasted 1-3 hours. I kept wondering if I was going to die.

My T levels were over 1500 ng/dL; the labs couldn't show values above that, so who knows what my levels actually were.

I tapered down to a half dose; didn't feel better. Tried 1/4 dose; felt better for a few days. Doc bumped me back up to 1/2 dose and my body went completely psycho every night since.

After I had an episode at work and had to leave early because I couldn't stop shaking, I stopped T. I can't blow my job because it's going to pay for my transition. Ironically, I slayed so hard since starting T that I got a promotion in the new year that puts phallo on the table within the decade.

My doctor basically has no idea what happened. I went to a sliding scale clinic that didn't run full blood panels. I had to fight my doc to get him to test my E. The day after I went off completely I had labs run, and my estradiol was in the ranges for ovulation. Maybe it went up when I tapered, but if aromatization had been happening and that value was higher, I wonder if it would have contributed to my symptoms, because having more testosterone than Mike Tyson AND being able to ovulate is too much for anyone's body.

I don't know if I need a lower dose. I'm hoping that's it. I don't know if I need to try SubQ, I've heard that's more stable than gel; however, if I'm really this sensitive to small quantities, I'm ultra nervous to load up on a shot. I might be one of those guys who need blockers. I don't know if I should postpone top and pursue a hysto.

All of this makes me very hesitant to proceed with long term transition plans.

Coming off T has been absolute a bunch of words not allowed at Susan's. I felt the day it went out of my body; it was like a lightswitch turned off in my head. I have all of these stupid crying jags FOR NO REASON. I don't want to talk to anyone. I feel bad and guilty and disgusted and ashamed, also for no reason (back to my baseline pre-T). I feel this fuzzy disconnect in the mirror, like the person there moves when I move, but it isn't me.

My smell is gone. I regret not saving a disgustingly sweaty pair of gym shorts to savor until I can get my smell back. The way my body smells on estrogen has always freaked me out hardcore, and it's even sadder now. My skin has dried up like paper and is back to flaking, I had to switch back to my pre-T cleanser. And what I had downstairs is GONE, and I know now exactly what erectile dysfunction feels like. I don't want to leave the house without a bag over my head, and I don't want to wear any of my clothes because it feels sad and pointless. I'm terrified of losing my recomp; I went down half a cup size, maybe more, and my hips were starting to melt off. I'm retaining water in bad places.

ANYWAY. I can see a new doctor in ten days. This was a long post.

I'm extremely interested in hearing stories from other people who had a screwed up dose, how you felt, how you fixed it. A lot of what I experienced sounds like people who had negative reactions to other steroids, like prednisone. I'm a little scared the tremors might be a lifelong thing and I might have to take beta blockers or something to stay on T, fingers crossed that isn't it.

The clinic that gave me the T kept ignoring my calls and telling me I had a stomach bug.

I cracked and went to the ER one night after feeling like I was going to die for about four hours. I got an EKG while my body was in freakout mode and my cardiovascular health is completely fine. Literally everything that could be tested is fine. The hospital said the freezing cold and digestive upset were common side effects of messed up hormones - I'm a little disturbed no one at the trans clinic knew this.

It was so bad, I started sleeping at my dad's house every night (1hr drive each way) because I was afraid of needing an ambulance.

Last night was the first night I slept. I don't know if a more gradual taper would have eventually brought me back to normal, but I had to pull the emergency break once my job was in jeopardy.

[Kylo]

My GP decided at once point to lower my dose by a quarter because she thought total T was at the rooftop threshold for "normal male" in my age range.... this wasn't something the supervising endo had advised, and later on in a meeting with him he said the dose was now too low and was probably causing me symptoms to that effect. It was. I got put back up to the full dose.

While that was going on I experienced fatigue most of all. The pep I got from T at the beginning never really returned even after returning to the initial dose. I've not had any sort of bleeding in years anyway, as my guts had effectively shut down for some reason before I even got on T, so I never had that, but I did have slight telltale cramp twinges that used to precede that a long time ago. Nothing more than that happened, even though I had an insufficient dose for about 3 months. I don't remember any sleeping trouble or anxiety or illness or other problems.

I do know what having very low T and low E is like though - about a year before I got my T prescription I had to come off E birth control completely. As a direct result I got:

1) thyroid problems
2) extreme fatigue
3) skin dryness
4) problems with dehydration and slow metabolism as a result of 1)
5) piles due to 4)
6) joint pain and general soreness in the bones
7) memory problems
8 ) killer migraines (this is a result of withdrawal from E, it can last a VERY long time, days, weeks months of continuous pain, so I wasn't able to quit E cold turkey. I had to cut little pieces off my pills every day for 8 months, the pain was absolutely unbearable otherwise).

Low E and T is no picnic. In my experience it took 8+ months for the body to adjust to the lack of artificially-administered hormone and start making some of its own.

[blackcat]

Ugh, that sounds like a nightmare to have gone through.

Here's a question: when you were experiencing all those symptoms from low/no E, did they persist for a bit even after you had normal levels of T? Like I'm wondering if it's normal that it takes the body time to adjust, even after a hormone deficiency is corrected?

I had some bloodwork indicating my T did fall to normal, and then dropped off completely after I stopped, but all my symptoms continued for a while. When I went to the ER, they said all of my symptoms were hormonal, and I'm wondering if my body continued freaking out for a couple of weeks because it was just so shocked from the wrong levels, and needed time to calm down again, despite having the levels corrected.

There are lots of logical reasons to assume this wouldn't happen again if I started on a dose suitable to me and had closer monitoring, but a small part of me is absolutely horrified I won't be able to handle the T for some reason.

I've found some other accounts of guys getting speedy, having a racing heart and feeling anxious when the dose was too high, but those were all in the context of a dose that was mildly too high for a shorter period of time. Mine was like... the labs couldn't read the number, and I had ignored warning signs for a month.

I also get similarly whacked out if I take 3mg of melatonin. I'll always cut benadryls in half. My super power is freaking out on drugs, apparently. I am still waiting to be visited by an ancient druid ancestor of mine that will teach me to chew leaves and shoot fireballs, or something epic.

My liver/kidneys/thyroid are all good at least, though.

[Kylo]

when you were experiencing all those symptoms from low/no E, did they persist for a bit even after you had normal levels of T? Like I'm wondering if it's normal that it takes the body time to adjust, even after a hormone deficiency is corrected?

They were pretty much rectified immediately by taking T. They would also be rectified immediately by taking a dose of E again, but I wasn't allowing myself to do that as I had decided to quit that hormone before I started T. The only symptoms which persisted was the damage done to my guts from the thyroid issue, which took about 2 years to heal. The thyroid issue itself cleared up within 4 months of being noticed after blood tests to confirm it. 

If what you have done is just stop taking all externally-administered hormones, yes, you are going to have a significant delay period before your body realizes it needs to make its own again. This can take anything from a couple of months to a year. The body only takes note of how much hormone is in the bloodstream and if it's coming from outside the body doesn't bother to make its own and shuts down internal production.

Honestly, hormones T and E are super important for normal daily functioning. When you've been without them for a long time you can end up feeling half-dead or like you're 80 years old needing a nap every few hours. It's horrible. I would never advise quitting taking hormones just because of feeling anxious. A sudden large drop in hormones in my experience leads to ANXIETY OVERDRIVE. I've mentioned this in detail in several posts across the forum before and why it's the primary reason I fear any sort of shortage of hormones in future or of not being able to get them. Because for that period of about 8 months I was driven nearly insane with a pervasive, intrusive sense of anxiety. This stopped the moment I got my first T.

If you're trying to get to the bottom of it, I wouldn't mess with the dose of your hormones too much and try to find an ideal spot at the top end of the normal male range. Since you felt good at the start it probably never was the T that was causing you problems in the first place. More likely it was high E; or the high levels of both interacting. It can take years for a healthy body to be "persuaded" with high T to shut down its female functions. It never happened with me because I guess my abuse of E pills in the past to stop periods had led to a "false menopause" - it had been literally years since I had normal functions, and the T worked very fast in that environment. For others it might take some time. Or you could look into methods of suppressing those functions, I think there are some shots you can get for that. Not sure the brand name of the product but seen folks talking about it.

How your other drugs are affecting the free and bound T in your system is an unknown too. Maybe try and find some research on that if you can. I had to do a lot of research just to connect thyroid issues with a drop in E - very few GP seem to be actually aware of it, or that there is a direct link, excepting a couple of specialists in other countries who knew about how it had affected cis women. If you can avoid taking some of them at all, I would. The less stuff in your blood interfering with the T the better. 

[Kylo]

I guess I could add that in my (nearly) 2 years of HRT, and despite my regular female functions not coming back during this time, I have experienced short sporadic "spasms" of hormonal issues. They are very mild, such as the occasional bit of muscular cramping for a minute or two, (no blood ever), or a few consecutive days of high blood pressure (like I used to get at certain times during a menstrual cycle, when you can feel it rushing in your ears a bit etc.) and then they pass on. I don't doubt like many transmen who still have their guts intact that it's the female functions trying to come back "online" every so often, and eventually failing.

What you have been experiencing could also be that. If you look at anecdotes, most of them out there have several years of taking T with occasional "blips" of periods or high blood pressure or cramps or other strange sporadic issues that then go away. 

[smithers 70]

Following. I have things to add as soon as I have time!

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[blackcat]

Thanks, Kylo. That's a lot of useful info to consider.

I'm not starting hormones again until I can find a doc willing to watch me like a hawk and who seems knowledgeable - fingers crossed the one I'm seeing next week is this.

Staying off T isn't really an option, either, but I can't lose my job because I got checked into the psych ward from not sleeping due to panic attacks every night.

I was going to get top in a few months, but I'm seriously considering hysto first now. Estrogen has never done me any favors.

The other weird thing is that none of this started until after my periods stopped. For the first 2.5 months, I felt amazing, slept like a rock, had zero anxiety... but still had my subscription to Satan's Unholy Waterfall.

So SOMETHING is up. When I know what's up, I'll share my answers.

It was so scary and exhausting.

[Ryuichi13]

*snip*

Satan's Unholy Waterfall.

I'm sorry, but that's the best line ever...and I'm Pagan!  (That means, I don't believe in satan, btw. )

I hope this new doctor works out for you.

Ryuichi