May Turner syndrome HRT complications

[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

[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

[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

[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

[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

[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☺️

[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

[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.

 

[Ravin]

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

[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

[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. 

[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!

[Jani]

1 hour ago, ChickenLittle said:

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

Your responsibility is to you alone! 

 

Jani

[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

[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

[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

[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

[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

[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

[SugarMagnolia]

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

 

[jae bear]

 Jackie power, I love it !!!

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

Hugs,

Jackie

[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.

[jae bear]

 I wanted to update this post, as I was seen by the vascular surgeon today and had a definite diagnosis complete with advice passed to my Endocrinologist. I went at 8:30 in the morning to have a Doppler study done on my pelvic region and have my iliac arteries fully investigated. It took a little while and I found that getting poked around in the groin by an ultrasound transducer is incredibly ticklish and very hard to manage for long periods of time. I had to grab the bed rails just to keep from woggling around on the patient bed uncontrollably because it tickled so much to have that thing pressed into my groin!  I made small talk with the ultrasound tech and she was rather cordial but not necessarily amused by my observations. I left there feeling rather uncertain what the outcome would be as I would need to  come back later in the afternoon to meet with the vascular surgeon. I came back at 1:30 and parking was terrible, but I made my meeting with just a couple minutes to spare and the vascular team was waiting for me as I got there, this did not fill me with confidence since they were literally standing there waiting for me to walk down the hallway. I was beginning to think something serious was going on, but they were very pleasant and happy to see me and took me straight in to see the vascular surgeon. He sat down and went  through my information on the computer, he took his time and one or two minutes passed before he even looked back in my direction. I was starting to get nervous again, anxiety was starting to become almost overwhelming, and I could feel the hair standing on the back of my neck. He turned to look at me and exhaled, again this did not fill me with any kind of confidence, quite the opposite. He asked me about my IVC filter, and why it was placed, how long it had been there and what type it was . After looking through all the medical documentation I realize it is a  bard tulip placed in 2004,  and it was indeed one of the early retrievable IVC filters and not the permanent titanium Greenfield that I thought I had. He asked me about family history of blood clot and whether or not I had had a clot of any kind, of course I haven’t had a clot or have ever had any of the symptoms, I also watch myself very carefully eating a careful diet that is focused around anti-blood clot considerations. He turned to look at the computer once more And spent nearly a minute before he turned to look at me again, his voice was very serious and his question was too, he asked me, Why have you come to see me about may turner syndrome? This is not something I’ve ever seen a male patient come to me with?  I then laughed and told him that while I know male patients very rarely have may turner syndrome and that most females that have it are rather skinny and I am not, I explained to him the motorcycle accident history and the fact that I had absolutely rearranged my pelvis with the tank of a motorcycle in the style of Wiley coyote while skiing through a forest !  He chuckled slightly and grinned at me,  then said he understood how the trauma could explain the diagnosis I received 14 years ago, however he could find no sign whatsoever of may turner syndrome in my current vascular state, he then commented that my current vascular state was completely textbook and normal as could be, and that he was recommending my endocrinologist proceed prescribing estrogen. 

 It took me a second just to process the information, my ears heard it but my brain was struggling with the thought, I’m going to get prescribed estrogen finally, my prayers have been answered and I did not have a blood clot inducing condition that would keep me from one of the most important parts of transition for myself. We both shared some small talk and I realized he had no idea I was trans  in the first half of our conversation, then somewhere along the way noticed the upper left-hand corner of the screen with my information where it says preferred name Jae, pronouns she her ...  I think it’s sunk in that second time he looked at the computer, you would think there would be something in my personal history that comes up every time someone looks at my information, it should be rather clear and not tucked up in the corner of the screen and need interpretation, it should say right on it transgender male to female, it would simplify things a great deal. 

 I was so elated at this news that I nearly danced out of the hospital with my one good leg, I hopped in my minivan and headed back to my office absolutely grinning from ear to ear on able to hold my excitement in. The relief was unbelievable, I can only imagine it would be something similar to knowing you just won the lottery or somehow found the cure to a disease that would’ve been terminal for you.  I rhythmically slapped the steering wheel all the way back to the office bouncing around in my seat with the occasional outbursts of giggles. When I got home I called my aunt and talked to my wife and we went out to eat to celebrate,  they were both happy for me, and I was just happy they were there to celebrate. 

 Hugs, 

Jackie

[VickySGV]

A very good day and a welcome DX. 

[Kirsten]

That is AWESOME Jackie!!! So happy for you! Just when things look bad, they always have a way of turning around. 

Kirsten