Susan's Place Transgender Resources

I sure hope someone is willing to read through this.

I am at the end of my rope, I am exhuasted, mentally, physically, emotionally and today was ready to put my fist through the wall, cry, or break something.

I seriously think I made the wrong decision in accepting my current doctor.  I spent months researching for an experienced doctor for hrt, that also took my insurance (Medicaid/Apple Health/Provider One.  Dr. after Dr. although great for hrt did not take my insurance.  I finally found a doctor in Seattle that met all requirements, I made the app. and two months later there I was happy as hell that I was there, but at the same time scared so many things may go wrong.  No sooner do I check in that I'm told this Dr. is no longer available, but Dr. so in so will see me....well ok.  In the exam room she says "well your my first transgender patient so it looks like we will be learning together"  Hell/What?  At that moment I had to make up my mind, back out, throw all hope out the window and start all over again, or accept that I would have to contend with one rocky freaking road of who knows what AND lead this Dr. by the hand through her learning curve.  In that instant I weighed out many things and decided if I do this I just may end up with a very solid Dr/patient relationship based on experience and honesty.

Here I am at 9 months after more blood tests than I can even remember, some for rare blood disorders and speaking in vague ways that disturbed and scared me, but I had no way to know this was not normal.  On the other side of the coin I was getting almost unrestricted access to the hormones that I desired so fear outweighed attempting to question things as I was so afraid to lose what I had.  After the normal (I guess normal) dosage changes, injection cycle changes, warnings of pending problems if various test numbers changed etc., I started to look on everything I was doing in my life as having the potential for ending my hrt.  My health is as near perfect as one can get BP, perfect EKG's, blood panels, I walk 4 miles every day etc. etc.

I had my 3 month Dr. app on Feb 20th a few weeks back, all of a sudden she wants new blood tests in two more weeks and if E serum levels are not a bit lower well back again to a previous injection cycle.  She asks me if I consent to this, everything inside says "enough is enough I've complied with every single weird thing you've asked for" but fear makes its come back once more and I relent and say yes. I had been in bedrest from surgery so levels built up a bit.

The verbal agreement:  If levels stay the same a return to old injection cycle (from 7 back to 10 days and the insuing emotional readjustment).  If they begin to lower again, we will just leave things alone and make an app for 3 months from now.

Did new tests two weeks later, they lowered.  COOL I AM HAPPY.  Yesterday I get another call, she wants ANOTHER set of the exact tests she had just got 3 days ago!!!  I call, 30 minutes, call gets dropped by receptionist.  I call again 30 minutes later I get put onto a number that just rang for 5 minutes straight, no answer, I hang up.  Two more calls and I get the head nurse's assistant, I tell her my full story, she says "we are so sorry, checks, says someone must have thought the last test results did not come in.....Your Fine/No Problem   RELIEF

Today I get another call ( recording, I was out on my walk) says I need to speak to them about dosage change?????? AND I need to do new BLOOD TESTS AGAIN.  It is six minutes after they close on a Friday, no chance to know anything at all.  I almost broke my phone.

Last Thing:  I find a web site for Primary Care Protocol for Transgender Patient Care at the http://transhealth.ucsf.edu  and nothing I have been put through was necessary.

Right now I do not know if I'm talking to myself or if I actually expect something but I think I may need a doctor in the Seattle to Bellingham area before I freakin lose it.  Perfect one day, sweet spot found, now what, who knows.  So ready to f___n blow.  Only one good thing, I have two vials of E here at home so come what may.   Dani

Your doctor is trying to learn.  Unfortunately, you are the lab rat. 

You have gotten what you came for......  Is being a lab rat so bad?  I don't know your answer.  Just realize what you are to the doctor and it might still be OK.  I don't know.

I hope you find answers!!

Hugs,

Jennifer

Quote from: JLT1 on March 20, 2015, 11:54:15 PM


You have gotten what you came for......

I came for help.

Quote from: JLT1 on March 20, 2015, 11:54:15 PM


Is being a lab rat so bad? 

Being a human that has fears, needs, feelings, and is desparate for the above help would be better.

Quote from: JLT1 on March 20, 2015, 11:54:15 PM

  Just realize what you are to the doctor and it might still be OK.

?

Quote from: JLT1 on March 20, 2015, 11:54:15 PM


I hope you find answers!!

Hugs,

Thanks

I understand...

I was a lab rat for the Mayo Clinic.  I wanted help.  I didn't get anything but pain. 

I found a good psychologist close to home.  I found an OK doctor who supports me but is still clueless about certain things.   

I honestly hope you find the help you desire and I apologize if I hurt you with my post. 

Hugs,

Jen

Dani, unfortunately our care comes with a steep learning curve especially when it comes to our hormonal needs. Based on the levels you posted and the info she is learning I have no doubt that she sees a problem based on the info she is learning now. What she may not know is the history behind why your levels are what they are now and without that history she will almost certainly try to lower your dose and retest and the next mid cycle point give or take a shot or too. fIf you want that history taken into account, then you better speak up now so as to not have to lower your dose or at least not having to lower your dose much. I'm sorry you have become the person she is learning on, but everyone has to learn somewhere. If you don't feel comfortable in that position you can always try another doctor, but based on the insurance you have that can be easier said than done sometimes. I wish the best of luck Dani. Hugs
Mariah

My shrink was a novice at trans issues - not quite the same thing I know but it was frustrating sometimes, especially when he started suggesting I do certain things that clearly came out of "Treat Your Trans Patient 101"... might have helped me when I tried to transition in 1990 but I was way past that point.

If you are unhappy with this doc (and I can see why, she sounds like a bit of a nightmare) it might be time to look elsewhere... at least for a second opinion.

There are a lot of past and present members of Susan's in your area. Have you thought about asking who prescribes their hormones?

Dani, your welcome to the name of the Endo I go to over in your area. He is in Everett, but you said between Seattle and Bellingham so he is definitely between the two. He has lots of experience when it comes to treating trans patients. I'm pretty sure they except what insurances you have too. If you want the the name just PM me.
Mariah

Quote from: suzifrommd on March 21, 2015, 04:56:56 AM
There are a lot of past and present members of Susan's in your area. Have you thought about asking who prescribes their hormones?

Reading these has certainly lightened my spirit, it crashed REALLY hard last night.  Each of your very needed responses deserves my very best explanation, I think I know now how to respond to multiple posts in one, so here goes.

Quote from: JLT1 on March 21, 2015, 12:49:28 AM
I understand...

I was a lab rat for the Mayo Clinic.  I wanted help.  I didn't get anything but pain. 

I found a good psychologist close to home.  I found an OK doctor who supports me but is still clueless about certain things.   

I honestly hope you find the help you desire and I apologize if I hurt you with my post. 

Hugs,

Jen

Jen, I was trying my very best to try and break down your reply in such a way that explained yet showed NO disrespect.  Your caring means the world to me, so no, I'm good, I'm just very very happy I have someone like you who cares enough to help.  :icon_hug:   Dani

Quote from: Mariah2014 on March 21, 2015, 12:54:58 AM
Dani, unfortunately our care comes with a steep learning curve especially when it comes to our hormonal needs. Based on the levels you posted and the info she is learning I have no doubt that she sees a problem based on the info she is learning now. What she may not know is the history behind why your levels are what they are now and without that history she will almost certainly try to lower your dose and retest and the next mid cycle point give or take a shot or too. fIf you want that history taken into account, then you better speak up now so as to not have to lower your dose or at least not having to lower your dose much. I'm sorry you have become the person she is learning on, but everyone has to learn somewhere. If you don't feel comfortable in that position you can always try another doctor, but based on the insurance you have that can be easier said than done sometimes. I wish the best of luck Dani. Hugs
Mariah

Thanks Mariah,  I did sit down and explain this with her on the last Dr. visit the 20th of last month, the fact that I was flat on my back after my surgery and that it spanned across 2 1/2 injection cycles.  Thigh injection, no exercise, no movement, just the slow build up of E without the aid of increased blood circulation to help the metabolism process.
She said she understood and wanted another test in 3 weeks, IF it started to lower then do not even worry and I would not even need to make another app for 3 months.  IF it did not lower, she asked for my agreement that keeping dosage the same, move my injection cycle from 7 days back to 10, I agreed.  Three weeks later (one still in bed rest mode) and three injections later, the new test revealed it had already lowered by 50 points.  I was elated!!! One day later she sends the message through a nurse she wants that same test done again, then two more messages saying the same thing.  Went from clouds back to hell hole in one day.  So much for our agreement!

Quote from: Ms Grace on March 21, 2015, 02:20:32 AM
My shrink was a novice at trans issues - not quite the same thing I know but it was frustrating sometimes, especially when he started suggesting I do certain things that clearly came out of "Treat Your Trans Patient 101"... might have helped me when I tried to transition in 1990 but I was way past that point.

If you are unhappy with this doc (and I can see why, she sounds like a bit of a nightmare) it might be time to look elsewhere... at least for a second opinion.

Thanks Grace, yeah I think asking for a new Dr. name for my area was the motivating basis for my post, that and just getting it off my chest (which is growing well by the way  ;D ).  Trying to be upbeat. 

Quote from: suzifrommd on March 21, 2015, 04:56:56 AM
There are a lot of past and present members of Susan's in your area. Have you thought about asking who prescribes their hormones?

Thanks Suzifrommd, yes, the same answer as for Grace, I was hoping for suggestions.

Quote from: Mariah2014 on March 21, 2015, 07:56:20 AM
Dani, your welcome to the name of the Endo I go to over in your area. He is in Everett, but you said between Seattle and Bellingham so he is definitely between the two. He has lots of experience when it comes to treating trans patients. I'm pretty sure they except what insurances you have too. If you want the the name just PM me.
Mariah

Mariah, YES  ;D  I will PM you, thanks.

Thanks to all, just seeing replies helps, they pull me up and out of this incredibly crummy hole.  My sincere Luv,   Dani

Dani, I sent you the info via PM
Mariah

I would suggest trying to call another Dr. or going by and speaking with them.  Explain your situation, and ask if they would be willing to consult/work with your Doctor so you don't have to go through this constantly.

Also is there an LGBT center in your area?  They may be able to suggest a Dr where you don't have to worry about Insurance.

Hope you can get this settled soon and stop being their pin cushion.

E-mail sent,

hugs.

Quote from: chefskenzie on March 21, 2015, 11:38:19 AM
I would suggest trying to call another Dr. or going by and speaking with them.  Explain your situation, and ask if they would be willing to consult/work with your Doctor so you don't have to go through this constantly.

Also is there an LGBT center in your area?  They may be able to suggest a Dr where you don't have to worry about Insurance.

Hope you can get this settled soon and stop being their pin cushion.

Thanks chefskenzie,

The call is in the works and I have recieved two new names from other people that are semi local (closer than the one I have).  I never even considered a Dr. just for consult, interesting!

I recieved a call that they have scheduled a phone converstation with the clinic director on Monday....so I will let a cool head rule until I know for sure what is up.

LGBT.....no, maybe in Seattle but I'm in a very rural, I mean really rural  :) area, so I think an LGBT center is probably a ways off, would be nice though.  Thanks again, and your avatar....by the looks of it.....a happy and pretty bride you are!  Congrats  ;D   Dani

The Ingersoll Center is in Seattle, and there are trans support groups in Shoreline, Everett, and Bellingham.

Ask and ye shall receive! That's one of the reasons we're here!

If you're rural can you do once a month to Seattle? That's about what you need. I live 50 miles to NYC but I go there for my care. It does help that I work in the city though.

I haven't gotten even 1/10 the tests you have and I have chronic medical conditions that require regular attention. However I go to a LGBT program of Beth Israel NY and I'm not the first one they have treated. Maybe you really should be looking for one who has experience.

Here is the link to the site has the info regards to the groups Beth mentioned
http://www.washingtongenderalliance.com/meetings.html



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Quote from: Beth Andrea on March 21, 2015, 01:20:49 PM
The Ingersoll Center is in Seattle, and there are trans support groups in Shoreline, Everett, and Bellingham.

Ask and ye shall receive! That's one of the reasons we're here!

Hi Beth,

Yes I forgot about Ingersoll, I used to go to that site when I was shopping for a doctor, almost every single one did not take my insurance.

What I did not say previously was that I had been sort of forced into retirement 3 years early, and for the last year or so have been living on 600+ $ per month.  Because of how important my hrt is, if I absolutely had to I would try to figure out how to live and pay for the doctor.  It is looking though like I may be finding one, plus the info I just posted about the clinic director phone call scheduled for this Monday.

I do go to a transgender support group but no leads yet from them.

Quote from: ImagineKate on March 21, 2015, 01:22:36 PM
If you're rural can you do once a month to Seattle? 

Hi ImagineKate,

Seattle is where my current doctor is, which is about a 100 mile one way drive.

Quote from: ImagineKate on March 21, 2015, 01:22:36 PM
Maybe you really should be looking for one who has experience.

Yep, as I said above, I spent 5 months looking for a doctor who also took my insurance, made an app, two months later walked in and they said "this doctor is no longer here, you can see............ :'(

Quote from: Mariah2014 on March 21, 2015, 02:01:36 PM
Here is the link to the site has the info regards to the groups Beth mentioned
http://www.washingtongenderalliance.com/meetings.html



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:) :) :) Gender Alliance is where I go to my support meetings  :).  They have no leads though.

I just deleted a post asking if I should look for a new dR. wherein I describe our disastrous first meeting. Basically she wanted to test me for low T after I had explained that I was seeing a gender therapist and that I no longer wanted to self administer hrt without medical supervision. She admitted to never having having treated a transgender person before and drew up the labs for MAY without asking me any other questions. So yeah, in the very act of writing the post I had made up my mind that I deserved proper care at a level that leaves no doubt or question. My timeline vs. Her learning curve. Options in my little town are limited but I will keep trying. So, sympathy, vote of confidence, support, etc...

Quote from: femmebutt on March 21, 2015, 02:32:26 PM
I just deleted a post asking if I should look for a new dR. wherein I describe our disastrous first meeting. Basically she wanted to test me for low T after I had explained that I was seeing a gender therapist and that I no longer wanted to self administer hrt without medical supervision. She admitted to never having having treated a transgender person before and drew up the labs for MAY without asking me any other questions. So yeah, in the very act of writing the post I had made up my mind that I deserved proper care at a level that leaves no doubt or question. My timeline vs. Her learning curve. Options in my little town are limited but I will keep trying. So, sympathy, vote of confidence, support, etc...

I wonder if she said May in order to read up a bit on TS care. Perhaps you could help her out by locating the WPATH 7 standards, as well as articles here in the WIKI section, and of course browse threads for any medical studies (or relevant and infirmative personal anecdotes regarding HRT)...then make an appt with her to talk about the transition process--what you expect of her, and what she can expect of you (in particular, no more self-medication).

Doctors tend to be very bright people, but like the rest of us might not know where to go for information...

Beth, I definitely thought she might have programmed in some time to get up to speed on trans care.  If I were tied to her in some way I would consider working to help inform and guide her to provide the care I need. It might even create a special relationship (you know how "firsts"are!) that would be beneficial. But there are other options. And there was too much left unspoken. I mean, I was being awkward because I'd never brought it up to a doctor before. There was more I could have said. Come to think of it, I'm sure she was awkward for the same reason...

Ugh! You're making me think I'm pussy-footing around the issue. Whereas I should be articulate, specific and direct about my needs...

Maybe with the next, more experienced DR. !!