So, I went in for a levels checkup appointment today. A few months ago, I was told I needed to abstain from alcohol for a month (I had already abstained from it for a month at that point after having a really rough few months prior FULL of way too much drinking).. I was told to abstain for another month because my liver enzymes came back very high (around 237, where normal levels are within the 0-40 range). I abstained, and when my results came back a month later, my liver enzyme levels had gone back down to completely normal. Well, today, they were back up again, to 240 this time. I slipped up and had ONE drink before my birthday, a little over a month ago. I haven't had plans on drinking again since that night, so we will see if those go back to normal again after a longer period of abstaining, which I am really hoping they do, because I don't want to have to lower my dosage, or worst case, quit spiro.
My second worry is that I was told that my prolactin levels are high, which I am aware is common for people on HRT. However, my doctor wants to make sure that HRT is causing the high levels of prolactin and that it is not a brain tumor, the only other possible cause of high levels (which I am positive I don't have). She wants me to go off estrodiol (I am on (dosage removed) a day) for a month, at which point I will get an MRI of my brain, and can resume estrodiol immediately after. I am nearing the year mark of being on HRT, and have just recently really started seeing rapid changes kicking in very fast, if . not daily. I look more feminized than I did 3 weeks ago, and the changes just keep coming. I have never been happier or felt more myself, and I honestly hate the fact that I am going to have to stop estrodiol for a month RIGHT at the point that everything is really starting to happen and my sense of self is really starting to shine. Now, I have looked into this and now do know that it can take up to 3-6 months for changes to reverse, and was told by my doctor that the most I would see is a slight increase in growth/thickness of facial hair, which I didn't really have to begin with. So, I am probably overthinking this whole thing, but I also did some research and found out that the correct way for blood to be taken to measure prolactin levels should be about four trials within a 45 minute period, with the patient laying down, relaxed, and the trials should test whether or not the levels decline as the patient becomes more relaxed/ is in different states of comfort. This site also said that lack of sleep/fear of needles or blood could drastically raise the levels of prolactin. The day I was tested, I was on about 3 hours of sleep (I couldn't sleep because I was THAT nervous to get blood drawn the next day), and therefore was far more terrified and tense during the blood draw. I am almost positive that all of these factors, plus the fact that I am on HRT, are the reason for my high prolactin levels, and that I will be stopping estradiol for no reason. This only irritates me and stresses me out more. I talked to my mom tonight and she said she would call the doctor tomorrow and see if there is a way around this or if I will be able to get my blood re-drawn the correct way.
Am I overthinking? Should I try to find a way around this, or am I being reasonable? Especially regarding the fact that I have no symptoms/nothing that would leave me to have a brain tumor, and it's pretty obvious that, high prolactin levels being common for people on HRT, that the hormones are what is causing the high levels. Do you guys think there will be a major regress of changes? I am mostly worried about losing the roundness/ softness of my face (I know this takes a long time to happen and therefore will take just as long to revert, however, again, I have noticed a lot more rounding/softening and overall feminizing of the face and body since even a few weeks ago, and don't even want to revert back to that point). It feels like I will be taking steps back for no reason, and right when I'm finally starting to really see rapid changes and am getting to a point of true happiness and comfort with myself, which is why this bump in the road sucks even more.
Both of these things combined have started really eating at me tonight, and I am just so stressed and scared right now. I may be overthinking, but I now just can't stop thinking, "what if something happens in the future, medically, or for whatever reason, that forces me to stop HRT completely? What if I have to stop my transition at some point?" I think the fact that I have been happier/ more myself than ever lately is why I am suddenly so terrified to for whatever reason LOSE my transition, the most important thing in my life, and all of the happiness/this life that I have acquired. It feels like I have everything to lose now, and if I had to give up my transition at any point in the future, I really don't know what I would do with myself. I could really use any advice or comfort, and would like to know if anyone else has gone through this feeling of being scared to lose their transition.
Mod Edit- No Dosages please
Yes. I keep thinking something might happen and all the testosterone will come back... this why I want an orchiectomy soon.
You have to listen to your doctor or go to another one. If you go to an endocronologist make sure to get a referral from your current dr. I don't think they would mind? I mean it is your health and also your choices to make. But no dr would want to risk your health and you shouldn't either.
1 month seems like a lot, and I know it's tough. I just think in the long run this is something you either do and get past to become even healthier and your transition will be that much more amazing.
Trust me, I'm not the healthiest. I hate going to dr appts, getting blood drawn, taking medication, bills and especially all the stress.. sometimes I think dyi would be so much easier (please don't do this). But I just try to think more long term and really what's the point if something awful happens and I die?
Sadly, most of us, in some way, have had to or still do go through challenges to get hrt. This is no different. Good luck with everything
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Do you swallow estradiol tablets? I haven't had enzyme issues, but I mentioned to my doc that I was concerned about the potential for liver damage from long term use of so many pills. She told me to start dissolving them under my tongue. Better absorption and bypasses the liver. Personally, I tuck the pills into my lower lip because I feel like it holds in place better. Run it by your doctor.
I would ask for another prolactin test first. Or 2 more. And before the tests try to avoid eating or doing anything that might make it increase.
This is probably not the best advice but if you're 100% positive there's not even a minimum risk of a tumor then don't quit HRT and don't do the test. I know your doctor is just doing her job and wants to be safe but it does sound a little over the top especially if there is absolutely no sign of tumor activity besides prolactin which can be caused by many other factors. OR get her to do another type of test that doesn't require quitting.
Edit: I just realized your post states your estrogen dose. You should delete it since it's not allowed in the forum :)
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I'll chip in, too, with the caveat that you shouldn't take unsolicited medical advice from strangers you met over Teh Interwebz:
I know how scary it sounds when your doctor says BRAIN TUMOR, but... little prolactinomas aren't all that rare, and they sometimes can even resolve themselves without treatment.
Yours, maybe/maybe not. You are, after all, monkeying with your endocrine system in a big way, and adjustments may need to be made. A second opinion couldn't hurt, either, as long as you don't go shopping until you get an opinion that you like.
All I'm really trying to say is that the tumor thing isn't to be ignored, but it may not turn out to be as awful as it sounds.
Hope you feel better soon!
Quote from: Daisy Jane on April 06, 2018, 04:24:06 AM
Do you swallow estradiol tablets? I haven't had enzyme issues, but I mentioned to my doc that I was concerned about the potential for liver damage from long term use of so many pills. She told me to start dissolving them under my tongue. Better absorption and bypasses the liver. Personally, I tuck the pills into my lower lip because I feel like it holds in place better. Run it by your doctor.
Yes, I actually had researched that a few months into my transition and have been dissolving the pills under my tongue since.
Quote from: Charlie Nicki on April 06, 2018, 07:03:12 AM
I would ask for another prolactin test first. Or 2 more. And before the tests try to avoid eating or doing anything that might make it increase.
This is probably not the best advice but if you're 100% positive there's not even a minimum risk of a tumor then don't quit HRT and don't do the test. I know your doctor is just doing her job and wants to be safe but it does sound a little over the top especially if there is absolutely no sign of tumor activity besides prolactin which can be caused by many other factors. OR get her to do another type of test that doesn't require quitting.
Edit: I just realized your post states your estrogen dose. You should delete it since it's not allowed in the forum :)
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I think that's what I am going to do. And thank you, I didn't know that wasn't allowed! Deleting now, haha :P
Are you on Cyproterone Acetate by chance? I had all these same problems while on it that's why I ask. My hyperprolactinemia went away after discontinuing it.
Quote from: ForeverLacey on April 06, 2018, 10:11:41 AM
Are you on Cyproterone Acetate by chance? I had all these same problems while on it that's why I ask. My hyperprolactinemia went away after discontinuing it.
Nope :/ Only Estrodiol and Spiro..
Hi LittleWitchGirl 🙋♀️ Welcome to Susan's Place! I'm Jessica. Your doctor has your best interest in mind with any changes she feels you may need. Discuss with her your feelings on how the results may be skewed due to extenuating circumstances and could she please readminister the test.
If you need to stop briefly, more than likely you won't experience any reverse.
I do understand the anxiety felt with the thought of stopping hrt. I just went through that for different reasons, and became very emotional about it. Happily I'm not.
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Hi! I also have high prolactin levels by the standard tests, and an MRI showed a little adenoma on my pituitary gland. My HMO does a yearly MRI scan to check on this, and so far no changes have occurred.
There are actually two sorts of prolactin that the standard tests respond to, the usual active prolactin molecules, and the biologically inert macroprolactin molecule. Macroprolactin shows up as prolactin in the standard assay test, and is very often responsible for the high level.
Asy your doctor about doing a poly-ethylene-glycol (PEG) precipitation method test. Quest Diagnostics, among others, can run this.
In my case, active prolactin levels turned out to be normal. It is likely my little adenoma is generating macroprolactin, a very common finding. If the little monster ever does get bigger there is a simple drug treatment that will shrink it over a few months in most cases. I did initially have to hold off on estradiol use until after the first scan and the macroprolactin test, but was right back on it as soon as we understood what was going on.
Quote
MACROPROLACTIN
Test Code
16122X
CPT Code(s)
PROF
Includes
Total Prolactin, Free Prolactin
Preferred Specimen(s)
1 mL serum from a centrifuged gel barrier tube
Minimum Volume
0.4 mL