What to expect when going off of Testosterone

[CursedFireDean]

Ok my main question here is what can I expect by lowering my dose and then stopping testosterone about a year and 6 months on it? (With plans to begin again as soon as possible.)

The long story here is:
My doctor at home is terrible for reasons I don't have the energy to go into completely right now. I've found a HIGHLY praised doctor in my college town who I made an appointment with. She is booked for a long time however, April 22 is when I could get an appointment.
The trouble I am in is that I do not feel safe returning to my old doctor again, my sister even said there might be malpractice involved though I'm not sure and don't really have the money or energy to find out, nor am I able to see her before this appointment with the new doctor anyways . My doctor is also unwilling to give me a refill without an appointment even though I called them for an entire month and was never able to get anyone on the phone let alone get an appointment for my ridiculously long Christmas break. She is in my hometown rather than my college town and now I am unable to see her.

Today I switched to a half dose because I want the small amount remaining in my vial to last as long as it can. Ultimately there is no way this vial will last me the three months I need to get a prescription from the new doctor. I will have to stop T at some point before my appointment. Hopefully I will not be off of T for over a month but I imagine I will.

What can I expect from this unfortunate circumstance? Both physically and mentally. What should I be prepared for that I may experience?
Thank you

[Alexthecat]

I would say there is doctor malpractice there. They would not take a heart patient off of their meds because they can't get in to see the doctor or delay meds for those with organ transplants. That could kill them. Sometimes you just have to walk into a place and refuse to leave until they fix your problem.

[CursedFireDean]

Sometimes you just have to walk into a place and refuse to leave until they fix your problem.

I wish I could :/ Unfortunately they are 5 and a half hours away now and I can't do much of anything since they never answer the stupid phone

[FTMax]

I would stretch out your doses as long as you can. IMO, that would be much better than going off completely if you've got the choice. Are you on weekly or biweekly injections? I'd also maybe consider decreasing your frequency until you can get a refill.

I had to go down to a half dose 4 weeks ahead of top surgery, and then stop altogether 2 weeks out. I wasn't allowed to resume until my drains were out, so I was on a half dose for 2 weeks and then off for 3. If it makes you feel better, nothing bad happened to me. I got fatigued a little easier, and I was constantly paranoid that shark week was going to immediately start up again, but it never did.

I do agree with Alex - most doctors are loath to take a patient off their medication without reason, and for most the only logical reasons to do so are (1) you no longer need it, or (2) you're experiencing negative side effects. Do you have anyone that would be willing to go with you and advocate for you?

[CursedFireDean]

I would stretch out your doses as long as you can. IMO, that would be much better than going off completely if you've got the choice. Are you on weekly or biweekly injections? I'd also maybe consider decreasing your frequency until you can get a refill.

I had to go down to a half dose 4 weeks ahead of top surgery, and then stop altogether 2 weeks out. I wasn't allowed to resume until my drains were out, so I was on a half dose for 2 weeks and then off for 3. If it makes you feel better, nothing bad happened to me. I got fatigued a little easier, and I was constantly paranoid that shark week was going to immediately start up again, but it never did.

I do agree with Alex - most doctors are loath to take a patient off their medication without reason, and for most the only logical reasons to do so are (1) you no longer need it, or (2) you're experiencing negative side effects. Do you have anyone that would be willing to go with you and advocate for you?

Thank you for sharing your experience, that is helpful.
I cut my dose in half today, but it didn't occur to me to decrease frequency as well. Without discussing dose, I'm on weekly shot and it's hard for me to go much lower than this unless I get smaller syringes but I may switch to biweekly if it looks like I need to. I know this current dose can maintain no period which is why I dropped to it (been at it before).

Again, unfortunately I am now 5.5, almost 6 hours away and cannot get to the doctor physically, nor do they ever pick up the phone or return calls. I am essentially unable to contact them at this point. I will keep trying but it doesn't look good considering how long I've tried. It's planned parenthood so they're terribly understaffed a lot, but it doesn't excuse just how hard it's been to get into contact the past few months.

[Tysilio]

Drat. I'm sorry to hear it's a doc at Planned Parenthood -- I was about to suggest that they might be a resource for you.  Is there a PP nearer where you are now?

Not that this excuses the behavior, but as I understand it, PP has only just started providing hormone therapy for trans folk, so it's possible that the staff may not be as educated as they should be.

[CursedFireDean]

Drat. I'm sorry to hear it's a doc at Planned Parenthood -- I was about to suggest that they might be a resource for you.  Is there a PP nearer where you are now?

Not that this excuses the behavior, but as I understand it, PP has only just started providing hormone therapy for trans folk, so it's possible that the staff may not be as educated as they should be.

There are some other PPs here but they don't do hormones unfortunately. The closest similar thing to offer hormones that I know of is in Atlanta, about 4 hours from me, so not much better than home.
I think I was so frustrated with PP because my doctor was actually the problem and was one of the first PP doctors to offer hormones so I expected her to be decent, but all of the other staff was great with everything. I got misgendered by my doctor but nobody else for instance. It was a strange situation. I do hope that other PPs start to get better though.

[HeyTrace19]

There have been a few times I had to go without T, the longest being 1 month...the worst things I experienced were extreme sadness/crying jags, fatigue, and loss of appetite.  Five years on T, my maintenance dose is every ten days, and it is a pretty small amount since I am an old guy

Is there a medical school near you?  If you can get an appointment at a general clinic with a medical resident, it is generally pretty quick to get on the schedule, and they will likely be able to continue your medication for you as long as you bring in your valid prescription and explain your situation.

[WorkingOnThomas]

Frankly, I would make an appointment with a local doctor and explain the situation. No one would find it reasonable for someone to go without prescribed insulin or tinker with their dosage because the initial physician cannot be reached and a specialist is momentarily unavailable - same thing for testosterone or estrogen. 

[CursedFireDean]

Frankly, I would make an appointment with a local doctor and explain the situation. No one would find it reasonable for someone to go without prescribed insulin or tinker with their dosage because the initial physician cannot be reached and a specialist is momentarily unavailable - same thing for testosterone or estrogen.

Unfortunately I'm in the south and the local doctor is THE local doctor, I can't get an appointment elsewhere any earlier. My appointment for a few months is the only doctor who does this here. No other docs I could try, not anybody who would continue my hormones anyways. Yay Bible Belt :/

Is there a medical school near you?  If you can get an appointment at a general clinic with a medical resident, it is generally pretty quick to get on the schedule, and they will likely be able to continue your medication for you as long as you bring in your valid prescription and explain your situation.

I don't know if there is, I'll look into it!