Jump to content
  • Welcome to the TransPulse Forums!

    We offer a safe, inclusive community for transgender and gender non-conforming folks, as well as their loved ones, to find support and information.  Join today!

jae bear

May Turner syndrome HRT complications

Recommended Posts

jae bear

I just spent the last several hours on the phone with the Kaiser transgender care team, I feel like my endocrinologist has been gate-keeping me for the last several months, it looks like something in my old medical records from 2004 showed up May turner syndrome which is where the iliac arteries overlap one another and put pressure on the left iliac artery and causes an increased risk of clot. I’ve never had any of the symptoms nor have I ever had a clot, but some of the reasons for May Turner syndrome include pelvic trauma and weight gain, both of which were prevalent in 2004 Due to a horrific motorcycle accident And my tendency to over eat during the first year of my marriage, so I think they need to do some new Investigation into my pelvic veins to see what’s going on now. I guess they could do a venogram with some contrast to see if the overlapping arteries are indeed occluding one another or causing pressure or if it was simply induced by the pelvic trauma of 2004, I just wish this were simpler as I hate continuing to self administer estrogen until my doctor prescribes it. You know it’s funny, I’ve been taking estrogen for a year now and I’m not having any problems at all, yet my doctor is acting as if I’m asking for a ride on the space shuttle. She actually asked me to go through 1540 pages of medical documentation and records from 2004 to find the pages that included the IVC filter placement, so far I’ve gotten to about the 700th page and I’ve only found five relevant pages so far, this seems like something someone in her department should be doing, it doesn’t seem like the patient should have to shoulder the burden of trying to go through these medical records. On top of that it literally took me well over a month just to receive the records and the month prior to that was spent communicating back-and-forth with her trying to figure out how to do it and what to do, that’s two months of wasted time and yet another wasted month of her asking me to track down the doctors that did the work, to get more information that’s already in the medical records, those doctors Can’t  remember things from 2004 and are only going to tell me to look back at the medical records. The funny thing is it would’ve taken her one day and a sign off from me to get those records, then someone who knew what they were doing could’ve gone through and found the pages she needed within a couple more days, is this gatekeeping or am I being sent on a wild goose chase to see if I’m serious? From everything I’ve read it does say that there is an increased risk of cloth for patients with may turner syndrome, but they typically don’t do anything about it until someone has had a clot, and the funny thing is it’s primarily women that have may turner syndrome and it’s rather rare for men to have it at all, so what is it, have I just beaten the odds or is my medical condition trying to tell me something? As it is I wear a compression sock on the right foot and would be happy enough to wear it on both sides as that is one of the recommended treatments for May Turner, and I did find plenty of cute compression socks that would be perfect so I would be very happy to do just that. I also have an IVC filter already in place from the previous motorcycle accident in 2004, which is another treatment for May turner syndrome and the possibility of patients with clots or I suppose they would only have put in IVC filter into a patient that had developed a clot already, but I guess I’m lucky just one more time!!! The only other treatment I found was an angiogram with the placement of a stent, but the person I talk to at the transgender care team department at Kaiser said that if they placed that stent it would be nearly impossible to get a doctor to sign off on estrogen, and since I really have never had a problem nor have I had a clot I doubt this is really a serious necessity. Then again I’m not a doctor and I want my doctor to be in care of all of my HRT administration, since I’ve been on a medium dose of estrogen for quite some time now and feeling just fine as well as watching my intake of vitamin K and caring for my legs with compression socks and the fact that I have an IVC filter in place I would think it would be easy enough to get a vascular doctor to write a special order to get this estrogen rolling, wouldn’t they want to administer it to me and keep track of it rather than me self dosing?

Hugs,

Jae

Share this post


Link to post
MaryMary

take good care of your health.

I think we have a certain number of estrogen receptor in our body. My endo said that at the end of the day we don't really care about dosage and that lower is better. He even plan to stop it at the age where cis woman get a menopause. Whatever happen with your problem maybe you don't have to take it for much longer anyway?

 

I'm not a doctor but i'm just trowing that out there in case.

I'm sending you positive energy

Share this post


Link to post
jae bear

 I’ve been examining a lot of the risk factors, it really depends case by case, if I’m reading things correctly looks like I’m a fairly low risk, but that depends upon the amount of overlap and the amount of pressure causing occlusion in the left iliac artery. The last time I had imaging was when my pelvis was smashed and so inflamed that my waist was 8 to 10 inches larger than normal because of the massive swelling. So no wonder there was an issue, it really looks like this just needs to be re-examined and until we have imaging with contrast and a venogram For the vascular docs to look at I have no idea exactly where we’re going, my gut says it’s probably a very low risk and that it may have resolved itself since the Trumatic pelvic injury that I had in 2004... The good news is I looked up dietary requirements and it looks like I’m already doing most of them, and the other items I can easily add and actually would like to add as they all sounds like something I would very much prefer, honestly I’m considering going mostly vegan if not completely vegan, but I really do love salmon and I occasionally eat some chicken. I have some great friends that are vegan so it really gives me a great excuse to pick their brains for recipes and cooking tips as well as all the good places to buy great Vegan fare... I think this all just means I need to take very good care of myself, and I need to do that anyway, so I’m not adverse to doing any of the things that are on the list and honestly I was trying to find a way to be more healthy throughout the entire process of transition so this is a great thing to know, not bad information at all as long as I can handle it properly. 

Hugs,

Jae

Share this post


Link to post
jae bear

Arrrggg!  The last message I got from my Endo was that she wants to have me finish searching through the last 800 pages of medical reports to find more information on the IVC filter, and that she is starting to feel like it would be objectionable to prescribe any estrogen while obeying the Hippocratic oath ...  this just seems lazy to me, I’m assuming she’s going to push further along and do some more research, I would think that a Venogram would be in order from the vascular docs, But now I’m getting the firm opinion she just does not want to prescribe the estrogen. I don’t want to keep self closing, but I don’t exactly plan to go without estrogen either. This medical information is 14 years old and came from a time when my pelvis had experienced ridiculous levels of trauma, and May Turner can be brought on by pelvic trauma or childbirth, so without new investigation into my pelvic region and vascular condition why is she making blunt determinations about the Hippocratic oath?

Hugs,

Jae

Share this post


Link to post
Charlize

Jae while it may seem impossible to bare i remember a time when i was denied E as well do to coronary artery disease.  The second heart attack was a deal breaker and i cried knowing that was it.  I then remembered being pretty happy simply living as myself.  That alone was something to be grateful for.  After all HRT is relatively new compared to gender issues amongst humans.  I'm on so many blood thinners that i was given a go ahead a few years back and being post orchiectomy i need some kind of hormone.   I choose E.

Don't give up hope.  Cry a bit if you feel it helps(i do).  Take a deep breath, and try to enjoy the progress you can make.

 

Hugs,

 

Charlize

Share this post


Link to post
jae bear

 I don’t care if I have to keep changing my medical insurance until someone will do the investigation necessary for my vascular needs, this condition may not have existed at that time but been brought on by trauma, although it could also be congenital and I need to know the difference. It’s important that the 14-year-old medical records are not the only reason for her thoughts, the levels of risk vary and I’ve never experienced any of the symptoms nor have I had a blood clot  As it is I’m just self dosing E anyway which is ridiculously dangerous and I know everyone’s gonna tell me that’s exactly the case, but at my modest dose I’m  doing just fine and I’ve modified many things to make sure that my blood clot risks are as low as can be managed, again I know this is a wishful thinking on my part but E is vital to my transition and to my mental well-being... so be it. I just need an endocrinologist that’s going to work hard to find out what can be managed, my current endocrinologist seems very lazy, making me sift through 1540 pages of medical records to find the things that she should be looking for and taking one diagnosis from 14 years ago and deciding not to do anything for me, this just isn’t good enough for me.

Hugs,

Jae

Share this post


Link to post
bobbisue

     Jae I understand your pain due to a DVT blood clot I was taken off E on Nov 23rd 2017 I have not yet been able to continue with my therapy this has been one of the hardest experiences of my life I have been tempted to self medicate despite the risks Hang in there girl it will work out in the end 

 

     Bobbisue☺️

Share this post


Link to post
jae bear

I did manage to talk with the Oakland trans care team today, we were setting up my phone interview prior to the FFS consultation. I explained some of the things I’m experiencing with my Endo and she was surprised, and had to look into the history of that particular endocrinologist. She then recommended I try a new Endo and I was a bit shocked. I don’t really know what all that means, but I told her I was willing to try continuing with my current endocrinologist as long as I felt like she was working in my best interest. The fact that I’ve heard nothing from my endocrinologist for days Is starting to bug me but I would like to work with her as long as she has the time and inclination to continue with me. The Oakland trans care team person I spoke with last time had told me that if I drove all the way to Oakland that this would not be an issue at all even if it was just a lower dosage of estrogen, and that while there is an increased risk it’s not a high-risk situation and has to be determined per patient rather than just an automatic no. I guess I may have to drive all the way to Oakland, and it would be fine,  I could visit some very good friends of mine and we could go hang out at the vegan Chinese place they like, actually they said there were some other really good places in San Francisco that has vegan sushi and I am all about the sushi so that sounds really great to me but then again that’s far way away from Oakland and I’m getting way off track here. I guess I just want somebody to do a current assessment and do some vascular investigation, it seems necessary to me at this point as I’d really like to know my risk factors, I’m not certain that since my pelvic injury was so long ago things may have resolved, because I don’t know if they do or they do not concerning this syndrome, but it certainly would be good to know what things look like now and go from that standpoint. I don’t really take much estrogen, it’s far lower and probably close to half or maybe just a little more than half of what my Endo would typically have me on, but I feel just fine the way I am and I am getting some Progression and growth so I see no reason to not except a lower dosage if that’s all it is.

Hugs,

Jackie

Share this post


Link to post
Guest Rachel Gia

Maybe if you see enough doctors you'll find one to sign off on your wish list but in the end that still sounds like DIY to me.

Trust the process and take care of your immediate needs which is to stay healthy.

 

Share this post


Link to post
Ravin

Seriously, I would go see another endo. The stonewalling is ridiculous.

Share this post


Link to post
jae bear
1 hour ago, Ravin said:

Seriously, I would go see another endo. The stonewalling is ridiculous.

 

 I guess I don’t want to tick off my Endo, even though there are two others in my immediate medical group area, I just want a more current examination of my condition rather than a simple no based upon 14 year old records from a pelvic injury that kills most patients. For all I know she’s doing a furious amount of work behind the scenes that I have no knowledge of, but from my perspective that does not seem to be the case, she simply seems too busy to do much more than text me her concerns and quote the Hippocratic oath.

Hugs,

Jackie

Share this post


Link to post
Kirsten

This all seems so weird. Have you talked to your gp? A 14 year old diagnosis should maybe looked into, but not be what excludes you from moving forward. Like Ravin said it may be time for a second opinion. At least talk to your gp and see why they say. 

The one thing I’ll tell you about the self medicating is before I got my scrips they made me stop. And that really sucked to put it bluntly. They wanted baseline levels. And after 4 months of low level E it was mentally messy. And took 3-4 weeks to get back to where I am now and feel right again. Just be careful with your health. Without our health we have nothing. 

Share this post


Link to post
ChickenLittle

I would seek another opinion-- I understand the desire not to make your endo mad, but your responsibility is mostly to yourself, not to her feelings. Good luck and I hope you find somebody who listens and advocates for you soon!

Share this post


Link to post
Jani
1 hour ago, ChickenLittle said:

...your responsibility is mostly to yourself, not to her feelings.

Your responsibility is to you alone! 

 

Jani

Share this post


Link to post
jae bear

I did finally get a message back from the endo... I guess the Oakland trans-care nurse sent her a nasty message about my displeasure (I guess I will need to watch what I say from now on, the trans care team was not pleased with my endo) and my endo told me she will have the local vascular team get on it in some fashion. I responded to her that I was unhappy that the nasty note had reached her and that I did want to have the vascular department do some looking into my current condition, maybe order a CT with contrast for a venogram... It appears she is no longer sitting on a firm "no", and all I ask is that she looks into this currently, the old hammered pelvis diagnosis doesn't seem relevant to me, new investigation is needed.

Hugs,

Jackie

Share this post


Link to post
Jani
4 hours ago, jae bear said:

I responded to her that I was unhappy that the nasty note had reached her and that I did want to have the vascular department do some looking into my current condition

Sometimes you got to do what you got to do.

 

Jani

Share this post


Link to post
SugarMagnolia

I think you handled it well, Jae. I'm catching up on content today and as I was reading, I was going to suggest that you talk to the trans team. That was an absolutely appropriate thing to do. If they sent a nasty note than I expect from a medical point of view, she may have deserved it.

Please stop putting other people's feelings ahead of your well being! You deserve to get the care you need. Don't feel bad about advocating for yourself!

Hugs,
Julie

Share this post


Link to post
BrandiBri

I agree with Julie, your endo should be concentrating on what's best for you, not what is convenient for her. I suspect that the Oakland team had reason to send that note, otherwise they would not have done so. I have heard that doctors usually do not call other doctors down unless they have a reasonable concern to do so. You had no reason to apologize, after all it is you health and well being that should be addressed and you had every right to voice your concerns and opinions.

 

Hugs,

Brandi

Share this post


Link to post
Jani

Sorry for the tough love but have I heard this before?

21 minutes ago, SugarMagnolia said:

Please stop putting other people's feelings ahead of your well being! You deserve to get the care you need. Don't feel bad about advocating for yourself!

 

Jackie you are a good and valued person.  Your thoughts and opinions are valid as is your life.  Be kind but take second seat to no one.  Hugs girl!

 

Jani

Share this post


Link to post
jae bear

 Wow, so much love all at once I don’t know if I can take it ! HA!

I promise I will speak up for myself a little more, while I don’t necessarily like to ruffle peoples feathers, I certainly believe I can be direct and to the point if I need to be, I guess maybe I should’ve done this quite a while ago instead of waiting several months, but talking back-and-forth with the trans team did precipitate some action, so at least there’s that...

Hugs,

Jackie

Share this post


Link to post
SugarMagnolia

Remember that you come from a long line of badass Jacquelines. Channel that Jackie power and be strong! 💪
 

 

angel.thumb.jpg.ba53068748975935d2382c394dba4647.jpgJackieO.jpg.af3aa00d6307aa15c8416ee624ec4cd0.jpg

Share this post


Link to post
jae bear

 Jackie power, I love it !!!

 If I could just get my hair to look like that !!!

Hugs,

Jackie

Share this post


Link to post
MarcieMarie12
On 6/12/2018 at 11:02 AM, jae bear said:

 

 I guess I don’t want to tick off my Endo, even though there are two others in my immediate medical group area, I just want a more current examination of my condition rather than a simple no based upon 14 year old records from a pelvic injury that kills most patients. For all I know she’s doing a furious amount of work behind the scenes that I have no knowledge of, but from my perspective that does not seem to be the case, she simply seems too busy to do much more than text me her concerns and quote the Hippocratic oath.

Hugs,

Jackie

 

 

Unfortunately, that is the choice you have to make. One of the things we as transgender people run into is the tran broken arm syndrome from healthcare providers. Alot of the time they have concerns but the concerns are based on lack of knowledge and not being willing to research things. Something to ask your endocrinologist is what other experience they have had with transgender patients. I also think it might be time to get a second opinion. In my opinion, my health is more important than hurting my providers feelings, and if they are professional about it they would understand.

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Recently Browsing   0 members

    No registered users viewing this page.

  • Who's Online   7 Members, 0 Anonymous, 18 Guests (See full list)

    • Charlize
    • ChickenLittle
    • Carolyn Marie
    • AsTheCrow
    • MaryEllen
    • Sharon Aml
    • MaryMary
  • Who Was Online

    72 Users were Online in the Last 48 Hours
    • Charlize
    • ChickenLittle
    • Carolyn Marie
    • AsTheCrow
    • MaryEllen
    • Sharon Aml
    • CyndiRae
    • MaryMary
    • Kirsten
    • Cluck1992
    • KoreyA
    • lani_transgirl
    • Amy LeBlanc
    • stbSusan
    • Erika_E
    • Willow
    • Aiyanna
    • Kenna Dixon
    • Michelle F
    • Falnone
    • Kai
    • Terry
    • maniclich
    • Clara84
    • Elyssia
    • Petra Jane
    • DenimAndLace
    • KeiraC
    • Fernode
    • Dev
    • Jani
    • Snow Princess Sophie
    • Sara w
    • claire1000
    • Beth
    • BrandiBri
    • MarcieMarie12
    • Dimitri K
    • jody
    • Danielle4d
    • JJ
    • jo jo
    • MamaBear
    • Jocelyn
    • bobbisue
    • hasan
    • kaye the grey
    • Timber Wolf
    • newguy
    • SugarMagnolia
    • Cheyenne skye
    • Myke
    • VickySGV
    • Mickey
    • Chronical-anxiety
    • Rachael
    • jade2003bs
    • LizzyLiam
    • princecharmless
    • Alex Skelton
    • Ren
    • Randi
    • Laura Beth
    • Jennifer 123
    • jae bear
    • Jazzykat
    • Sara91
    • tracy_j
    • Alexiawolf
    • Cmattison
    • Katelyn
    • Lady Ayu
  • Topics With Zero Replies

  • Forum Statistics

    • Total Topics
      65,543
    • Total Posts
      593,194
  • Member Statistics

    • Total Members
      3,315
    • Most Online
      1,536

    lani_transgirl
    Newest Member
    lani_transgirl
    Joined
  • Today's Birthdays

    No users celebrating today
  • Posts

    • Amy LeBlanc
      Hello All   So I want to ask about finally being able to live full time as the woman that I want to be.  So my family and friends all know since I have come out to them.  I have started to come out to my new job where the individuals I work with in Phoenix and my HR rep knows and now I would love to start being able to live full time.  On my time off from work, I am finding myself always dressed as myself.  I just need to officially come out at work.  I have been now really thinking on going and getting my name leagelly changed with my gender markers from the court to the SSN to the DMV,   Lots of Love   Amy
    • Kirsten
      So this is great! Everything is so much easier once you’re out. Went to Walmart with a bra today. And makeup too!! Still pretty andro dressing for me. But I’m starting to push the “envelope” a bit now. I got a few looks from people, but like you all keep saying I think people are so wrapped up in their own bs that they really don’t even notice. And with political correctness what it is around here nowadays I don’t think many people would say anything anyways.  Picked up my scrip at the pharmacy today and the pharmacist congratulated me as well! I have to tell you, I wish I had done this years ago. It’s amazing what it’s like to be truly happy.  And my friends have changed to female pronouns for me now. And I don’t think anyone has called me Michael in a few days either. Such a wonderful feeling. It’s all just so much easier and comfortable now.  ❤️Kirsten 
    • ChickenLittle
      I'm getting peri-areolar surgery next week, but I think double incision is the kind of top surgery most people opt for! My surgeon has a great website with info about different incision types and the recovery process. If I'm not mistaken, most doctors will have patients wear a compression vest for about a week following top surgery, but some do not. However, many doctors do advise limiting activity and avoiding lifting your elbows above shoulder height for up to six months to minimize scar stretching. Most people I've heard from say that the recovery isn't too painful, but that they have lasting numbness on their chest that may or may not ever go away. I have heard that the compression binder is uncomfortable and kind of awful, but for a week I find it worth it to never have to wear a binder again.    Your best bet is to find a surgeon in your area and schedule a consultation to see how they do things, since every surgeon does things a little differently. Make sure you see photos of their results and that you like their general style and that they have performed the surgery more than a few times-- some surgeons specialize in gender confirmation surgeries and they tend to be very skilled and knowledgeable about the trans community!   https://www.genderconfirmation.com/surgery/double-incision/ 
    • Willow
      Based on what I’ve read here and elsewhere that’s what I’d like to try but I’m not sure that’s going to be enough E for me long term.  I have no intention or current desire for SRS or GCS. 
    • DenimAndLace
      Willow, ...I'm sorry you've had to deal with all that Willow.  Especially your granddaughter.  That's more than anyone should have to bear.  I Don't think I'll ever forget the time my marriage counselor looked at me and said, "you've had a hard life".  Which, I mean, she has worked with a lot of people right?  And for her to judge MY life as hard is really saying something.  ...I'd say, depression, cancer, and loss of a grandchild would have to rank among apocalyptic.  I wonder if even a low dose of E and an anti-androgen (LITERALLY for emotional reasons) would help you.  I've heard so many say HRT improved their mental health - it did mine.  Maybe that's all the further down transitions road you'd need to go???  It's a slippery slope though.
    • Willow
      MarcieMarie12, DenimAndLace  I won't say we haven't had issues with our marriage.  But, we've been married for over 46 years.  Two kids, three granddaughters.  Neither of us want this, but as everyone here knows, it isn't a choice.  As my therapist said to me during one session, if we had a choice, would any of us choose to be this different?  I've been denying my feelings for nearly 60 years.  Always thought it was a fetish or something. i hide everything from everyone.  I never really put it together with my episodes of depression.  My wife recognized I needed to see someone for the depression years before i did. I kept insisting I was fine.  When it started really getting in the way of life I finally saw my doctor for an anti-depressant.  I suppose it helped but life happened.  Our then 6 year old granddaughter was diagnosed with cancer, a brain tumor.  Three 12 to 16 hours surgeries, chemo, proton radiation, traditional radiation, experimental treatments, 18 month of trying everything we could to save her, she told us God had told her it was time to come home.  My doctor gave me more anti-depressants.     The two in combination gave me really bad GERD, which in turn gave me laryngeal cancer.  That is essentially cured.  But I stopped all the anti-depressants.  That's when everything got worse for me.  I finally told myself i needed to find a therapist.  Still didn't tell her why except for the depression from the death of our granddaughter.  after just a few sessions, the dam broke and I told him everything.   I was not on anti-depressants, but was relieved and happy for the first time in many years.  a few more sessions and I asked about HRT and he approved it.  Instead of HRT I got a different anti-depressant from my new doctor.  At first I was emotionless, now I am back to feeling better but along with that the desire to be female has gotten stronger.  I suppose due to lower inhibitions.  I guess we just have to see where this goes.    Willow
    • Fernode
      Thanks  My therapy starts on August (officially with doctor!). And maybe I'll do HRT this year or beginning of next year! ☺️ I also got new clothes and I planned to shop new one next month with my flatmate (roommate), but I am kinda nervous a bit, to be honest.     I do not do Self-Medication, don't worry. I start therapy on August 23th. And I also have a specialized counseling at our University Clinic on July 10th.   Thank you very much, Riley with ❤️
    • stbSusan
      So today was the very first day that i wore a sports bra to work and i felt amazing wearing although it did take a bit to get used to wearing it but i was very comfortable. just wanted to share that. thanks
    • Jani
      Ah yes.  I think it's a combination of estrogen and age.  Noooo!    Jani
    • KoreyA
      His girlfriend said he looked beautiful as a female.Borrowed a dress to wear from her
    • Carolyn Marie
      That's horrible. I wonder what led to that desperate act?  At least some people tried to help.   Carolyn Marie
    • claire1000
      Springstien ,the Born to run CD always gets in a good mood in the morning  
    • Carolyn Marie
      That's great to hear, Korey.  I hope he finds continued support and happiness.   Carolyn Marie
    • DenimAndLace
      The best advice I can give couples in transition is what I learned going through transition myself.  Each person will need to learn to SAY very hard things to each other and also, learn to HEAR very hard things from each other.  Everyone thinks they're good at doing that but I'm talking about a much deeper level that I've rarely seen in relationships that haven't gone through something apocalyptic.  Tell each other the most raw and naked feelings you are having ALL THE TIME - don't stockpile emotions or things you're thinking about.  Hear each other's pain.  Help each other process it without being defensive.  In addition to having a gender therapist, we worked with a marriage counselor who facilitated our so-called hard discussions until we learned the skill and could do it on our own.  We started with nearly impossible odds coming from conservative and religious territory with only a moderate marriage.  I was positive she was going to leave me when I told her but she stayed by me hard as it was for her.  We went slow TOGETHER and slowly got proficient at communicating until there was nothing we couldn't talk through.  Today we're through the fog and doing better than ever.  It CAN happen but it takes a LOT of hard work.  Others have not been so fortunate as we have so don't be discouraged if your relationship doesn't survive.  What I'm offering is only advice, not a guarantee.  Best of luck to all who read this.
    • BrandiBri
      Happy Birthday Dimitri K!🎂 Have a great day!   Hugs, Brandi
  • Upcoming Events

×