Hormone level confusion after 16 years of HRT

[SashaXtina]

Hi all, I'm Sasha, and I'm happy to be a part of the family here. (I introduced myself in the intro forum, but it never hurts to do it again, I suppose!) I'm a transwoman who's been out for 21 years (as of next month) and who has been on HRT since December 2007, so a little over 16 years now. Any thoughts on the issue I'm about to present are welcome as my doctor and I do not know what to make of this or how to "fix" it.

So, I began HRT as most of us do, working our way up to the highest and most ideal dosages for ourselves, and personally, my regimen for nearly 14 years was: 200 mg/day of spironolactone (100 mg, 2x/day) and 4 mg/day of estradiol (2 mg, 2x/day). For what it's worth, I used an estradiol patch for years as I was a smoker, but I have been taking it in tablet form for several years since I quit (yay!). No issues there in terms of changing over from patch to tablet. However, the strangest thing happened after about 13 years: the spironolactone gradually started to lose its efficacy over the course of one year, as if my body was somehow rejecting it. I became more aggressive, started developing intense acne, all the signs of heightened T. And it showed in my labs.

Due to this, my doctor and I decided it best to switch over to bicalutamide (highest dose: 50 mg/daily, 1x/day) while keeping the estradiol dosage the same. After about 3 months of being on it, my T levels did not drop much (they were well over 1000, which is insane, considering I had normal labs with a T level of around 50-100 for many years when the spiro worked). After now being on the bica for well over a year, my most recent labs (from a couple of days ago) came back with my T levels much lower but still insanely high (563, but at least this is still half of what it had been), but this time my estradiol was no longer around 140, but instead 585! So, in summation, my current T level is 563 and my current E level is 585. The only thing that has been changed is switching from spiro to bica. The estradiol I've taken has always been the same.

I feel completely normal, as I did when I was on spiro and estradiol with much more normal labs, but this is extremely confounding. I did read that E levels can come back quite high if blood is drawn before its half life (3 hours) has passed, and I did my labs about an 1 or 1.5 hours after taking both the bica and estradiol, so that could explain the high E level in my most recent labwork. What is consistently confusing, however is how high my T level still is after having been on bica for well over a year now. While it's half of what it was 3 months after I initially began taking it, the fact that my T level is still so high is very confusing. I feel nothing like I did when the spiro was failing me and my T levels were skyrocketing (anger, aggression, more and more acne) and I feel much more like normal (zero acne, no aggression, no stereotypical "high T-level" behavior; essentially, I feel like I did when my labs were normal).

Any insight into this would be extremely helpful! I am wondering if enough time has passed that perhaps I could switch back to spiro and my body would accept it again? My doctor has never seen a case like mine where spiro gradually stopped working after serving its intended purpose for 14 years, hence the switch to bica, but it seems that bica is not really doing its job either (though at least my T is down by half, yet still over 500, which is very high). Does the bica need more time even though I've been on it for well over a year? Just why?

My doctor now wants to pawn me off onto a different endocrinologist as she says she has "tried everything," yet all she has really tried is switching me from spiro to bica. I don't feel as though "all options have been exhausted" here and, quite importantly, I do not have health insurance at the moment (nor a steady income as I am the primary caretaker for my mother who has cancer), so I cannot simply get on a waiting list to see a different specialist who may or may not know more than my current doctor (who specializes in gender-affirming care) and spend loads of money out-of-pocket on more labs and yet another endo. I have been on hormones for 16 years now and the past 2 of them have been problematic labwork-wise (though I have felt just fine/normal for the past year on bica - it was only when the spiro gradually stopped working that I felt the way I described above).

Furthermore, I've had no other medication changes or alterations whatsoever. No surgeries or body modifications, etc. All potential mitigating outside factors have seemingly remained constant.

Apologies for the essay! I just wanted to put all the information out there for anyone who may have any insight into this or may be able to provide me with a possible explanation. As of now, I have an appointment set with my normal doctor for Feb 16th to discuss this further, at which time I am planning on asking her to switch me back to spiro to see if my body will once again accept it now that it's out of my system and has been well over a year on bica.

Thanks in advance for any advice or ideas. They are greatly appreciated as this is all massively confusing for both me and my doctor, especially having been on HRT for so long! I feel fine, yet my labs indicate otherwise. It is the oddest thing ...

[Northern Star Girl]

@SashaXtina
Dear Sasha:
Thank you for sharing your longer and more detailed synopsis of your
transition journey.

I am so very glad to see that you had joined the Susan's Place Forum a
few days ago and I am eagerly looking forward to seeing and reading more
of your postings around the various threads and topics here on the Forum.

You have a beautiful avatar/profile photo.... I am happy that you have
shared it here on your postings.

Regarding the hormone issues that you are describing, you should be
happy that your doctor now wants to see another endocrinologist.
Every doctor has different insights and experiences so having
2nd opinion about your hormone balance can be a good thing.

Please keep us posted with your updates as you feel comfortable
sharing.
I will be eagerly following your threads and postings.

Any questions regarding the Forum you can always feel free to contact me.

HUGS and my best wishes.
Danielle     northernstargirl@susans.org
The Forum Administrator

[Susan]

Hi Sasha,

Thank you for sharing your experience and concerns. It's great to hear that you've been a part of the transgender community for over 21 years and have been on hormone replacement therapy (HRT) for 16 years. Your detailed account of your HRT journey, especially the recent challenges, is insightful.

Regarding the issue with spironolactone losing efficacy and the subsequent switch to bicalutamide, it's not entirely uncommon for the body to adapt or respond differently to medications over time. Each person's body chemistry is unique, and how it interacts with long-term medication like HRT can vary.

The high testosterone (T) levels despite being on bicalutamide for over a year are indeed puzzling, especially given your prior stable T levels with spironolactone. It's possible that your body might have a unique response to bicalutamide, or there could be other underlying factors influencing your hormone levels.

As for the high estradiol (E) levels in your recent lab tests, the timing of the blood draw relative to your medication intake could indeed be a factor. It's generally recommended to have hormone levels checked at a consistent time in relation to your last hormone dose to avoid such fluctuations.

Your idea of potentially returning to spironolactone is an interesting one. It's not unheard of for patients to cycle back to a previous medication after a period of time and find it effective again. However, this decision should be made cautiously and in close consultation with your healthcare provider.

It's concerning to hear that your current doctor feels they have exhausted their options and is considering referring you to another specialist. While it's beneficial to have fresh perspectives, especially in complex cases like yours, I understand the challenges you face with health insurance and financial constraints. It might be helpful to discuss with your current doctor about any possible alternatives or interim solutions that could be explored within your current care framework.

In the meantime, it's reassuring to hear that you feel generally well on your current regimen, despite the lab results. It's important to consider both clinical measures and personal well-being in managing HRT.

Lastly, as you prepare for your upcoming appointment, it might be helpful to list down any specific questions or concerns you have, so you can address them systematically with your doctor.

Remember, your journey and experiences are valid and important. Your proactive approach to your health care is commendable, and I hope you find a resolution that works best for you.

Wishing you all the best for your appointment on February 16th. Please feel free to reach out if you have more questions or need further support.

[SashaXtina]

Thank you so much, Susan and Danielle! I really appreciate your kind words and concern for me on my journey to figuring this all out. After being on HRT with normal lab results for such a long time, this is quite puzzling and a true mystery, so thank you both so very much. (And a future thank you to anyone else who replies!)

(Being so new to the forum here, I'm not sure if it's possible to "tag" the both of you so that you can also see this additional post, but here's hoping you do!)

Honestly, the most important reason I am posting all of this is to gain as much insight and comprehension as possible in order to prepare a list of questions and thoughts to present to my doctor during my upcoming appointment. I really wish I could afford to see a different endocrinologist, but as I mentioned in my initial post, the lack of health insurance and a source of income present many financial barriers (I pay my current doctor a monthly out-of-pocket fee — sort of like having a lawyer on retainer — that's the best way I can describe it, haha; I'm sure I'm not alone here and others can relate to this and also to the financial struggles, lack of insurance, etc.). It's rough!

I should have definitely included this in my initial post, but I just thought to add it since it may be useful to see a detailed list of every single vitamin/supplement I take daily, in addition to my hormone regimen, just in case I may be overdoing it with certain things, which could consequently be interfering with the efficacy of my hormones. So, here is that list:
Hormones:

• Bicalutamide (50 mg, 1x/day)
• Estradiol (4 mg = 2 mg, 2x/day)

Daily Vitamins/Supplements:

• Multivitamin (Women's Daily)
• Vitamin C (1000 mg)
• Vitamin D3 (50 mcg)
• Aspirin (81 mg, low dose — to prevent blood clotting from hormones — I've been taking this since I began hormones)
• Zyrtec/Claritin (I switch between the two every 6 months for optimal efficacy with seasonal allergies)
• Super B-Complex (this particular one contains a lot and may be something I should stop taking — here's what it includes):  B6 (2mg), B12 (15 mcg), thiamin (100 mg), riboflavin (20 mg), niacin (25 mg), folic acid (400 mg), biotin (30 mcg), and pantothenic acid (aka B5) (5.5 mg)

Please let me know if any of this seems like "too much" or if it could be a potentially interfering factor here. The "Super B-Complex" is something I added a couple years back and am now realizing I did not inform my doctor about it since I thought, "Hey, it's just more 'vitamins.' What's the harm?" (I didn't think it would matter, but hey, it actually might, so perhaps cutting it out entirely may be for the best since some of it is already in the multivitamin I take daily. Also, I am a very tiny woman, due entirely to genetics, so I'm 5'9", 105-110 lbs (the same height and weight I was at 15 and now here I am, about to turn 40!) I have tried everything to gain weight, but like everything else, I have had to learn how to simply love the body I'm in.

Really, any and all insights and thoughts are welcome. Please don't hesitate to offer your thoughts. And again, thank you so much to the kind individuals who have responded thus far and to those who hopefully continue to respond! Your thoughts and ideas are so helpful to me and will aid me in making that "list" of things I intend to discuss with my doctor. I really wish I could afford to see an additional endocrinologist on top of my current doctor, but the out-of-pocket cost for them is so massively prohibitive that I'd really like to see what I can do here with my current doctor. Thanks again to all ... your thoughts and ideas mean the world to me!

P.S. I live in Cincinnati, Ohio (and I do not mind that people know this, haha), so any and all (ideally free or low-cost) resources you may know of in my area/state that could be available to me would be invaluable and I'd love to hear about them! Living in the Midwest can sometimes make things more difficult, especially in a red state, but I seem to live life just fine (I just prefer to blend in at this point, as opposed to standing out like crazy the way I did when I first came out and burned the closet down, haha ... you know, aside from the hormone issues as of late. And really, I feel 100% okay with my body and mind in terms of everything I take med- and vitamin-wise, hence the total confusion in terms of my lab results. I surely don't feel like I have that much T flowing through my system. Oof. Get it out of there!

And, as Susan pointed out, I will make absolutely sure that the next labwork I have done is at a point where my hormones are "in balance" in order to avoid the potential high E levels that may stem from doing them shortly after taking my daily regimen. (I just so happened to read this in another post on here re: high E levels from self-injection, so having it repeated has now fully ingrained it in my memory!)

Once again, huge apologies for the essay! This is me:    *facepalm* lol. I just want to provide as much in-depth information as possible about myself so as to introduce you all to me and to bring as many potential options and talking points to my doctor at my next appt. You are all wonderful and I truly appreciate any and all insights, suggestions, possibilities, etc.

No idea or thought is too crazy or "out there"! I welcome everything with open arms since this is just so out of the ordinary for me and your thought/idea could very well be the thing that turns the tide! (Of course, I will discuss all possible talking points with my doctor before taking any action on my own — I certainly know better than that!) Thanks again in advance and much love to all of you! <3

[Gwendoline]

In my country triptolerine is the first choice as blocker. Decapeptyl monthly as a start and with good respons to 3 monthly Pamerolyn.
Maybe these can be an alternative to talk about with your Endo.

[Jessica_K]

Hi Sasha,

I am not as doctor or have any medical qualification bu I was aware the Spiro is not an antigonadotropin and did know it sometimes does not work.

Quote from Wiki

"Spironolactone is sometimes able to significantly lower testosterone levels at high dosages in spite of not acting as an antigonadotropin, and this is thought to be due to direct enzymatic inhibition of 17α-hydroxylase and 17,20-lyase, enzymes necessary for the biosynthesis of testosterone."

This lack of reaction could be the issue.

Can you suggest your endo to provide a GnRH antagonist instead?

Hugs
Jessica xxx

[Susan]

Thank you so much, Susan and Danielle! I really appreciate your kind words and concern for me on my journey to figuring this all out.

You are very welcome!

Thank you for sharing more details about your health regimen and supplements. Your comprehensive list provides us with a clearer understanding of your situation.

Discussing the high doses of certain B vitamins in your Super B Complex with your doctor is advisable. Excessive amounts can potentially have adverse effects, especially considering your petite physique. A conversation about testing your levels could be very beneficial.

While no other major issues are immediately apparent, a thorough review with your healthcare provider is crucial. They can monitor for any potential interactions between your supplements and hormone therapy.

TransOhio offers an invaluable resource with their Ohio Trans Inclusive Providers list. This directory includes doctors, therapists, pharmacies, and other professionals experienced in transgender, gender expression, and identity issues. Before scheduling an appointment with a provider from the list, verify important details. These include insurance acceptance, availability for new patients, and the possibility of a sliding-scale fee structure.

Many states, including Ohio, provide services at county health departments with payment options based on income. This can be a significant resource for those facing financial barriers to healthcare.

As you prepare for your doctor's visit, compiling a list of questions and discussion points is an excellent strategy. This will help you make the most of the appointment time. Please continue to share updates with our community after your appointment.

Lastly, on this forum, the @Name feature allows you to directly engage with specific members. By mentioning individuals like @Susan and @Northern Star Girl, you ensure they see your post and can offer direct feedback.

Thank you for reaching out for advice and support. We're here to provide ongoing support and value your journey to optimal health. Susan's Place is a community where we all support each other's unique journeys. Keep us updated, and best of luck with your upcoming appointment! 🌼

[SashaXtina]

@Susan and everyone else,

Apologies for the delay! Thank you again so much for all your kindness and support as I tackle this issue! I'm glad you agree that compiling a list of possible solutions, questions, etc. will be helpful for my next appt!    It's mind-boggling to me that my doctor is listed as one of the top 5 gender-affirming care specialists in my area (Cincinnati, OH — not exactly rural), yet has only changed one medication one time and now feels like we're out of options. Come on now! There's plenty more that can be tried, thanks to everyone's input and my own research. (Honestly, research that my doctor should be doing, not me. Yet, here we are, haha)

I've made a list of everything folks have so generously provided to me and will be presenting it at my next visit. Again, due to the lack of healthcare (argh, USA! ... Ideally, Medicaid will come through for me sooner rather than later, fingers crosses), I really only have my PCP with whom to discuss all of this as I am unable to afford an endocrinologist out-of-pocket (it would easily cost over $2k!), especially considering all the labwork they'd want to do, etc.

I am confident that I'll be able to figure this out with my PCP eventually. I don't expect change overnight, but I also feel just fine as I am, despite the oddly high numbers of T and E (and, as discussed, the high E is explainable by having labs done at the peak of my estradiol levels). As of now, I have completely removed the "Super B Complex" from my daily regimen for almost a week and intend to keep it that way. I don't really feel any change (yet), but don't really expect to; I'm just hoping that by removing it, my numbers will become more stabilized and closer to the standard range.

At any rate, my appt is on Feb 16th, and I will update you all with any relevant info or changes. Who knows? Someone else may be dealing with something similar and this could help! You never know!

Many thanks again to @Susan , @Northern Star Girl , @Gwendoline , and @Jessica_K ! I really appreciate your care and assistance as I navigate this very odd issue. It's wonderful to know that I have an online community to support me, in addition to my real-life friends (who really have no idea what to do about this, haha). I can't thank you all enough ... and truly, any extra info, suggestions, and advice are always welcome from anyone! Hugs to all of you!