Apparently my E levels are too high!

[EasyE]

That was a shock when I went in for my labs this week. (Are we allowed to post what our levels are? I know we're not supposed to post about dosing).

 

I've been on E injections since early October after having a hard time with the patch. My T levels are "adequately suppressed" (using monotherapy!) but she said my E levels were too high. I was depressed when she mentioned cutting my dose in half. I feel like that is an over-reaction. I don't want to lose what I have right now. Anyways, am wondering if taking shots on Mondays for a few weeks in a row, then taking a Sunday shot leading into my labs may have thrown things off (they requested doing a Sunday shot because all of their lab appointments are on Wednesdays)... 

 

I have gained weight, too. About 10 pounds. Yikes... 

[kat2]

I personally do not think it possible to have too higher levels of E as it is dependant upon when the sample was taken and when you had your shot. E is not constant and the natural female range goes way higher

huggs kat

[EasyE]

Mine was 367 ... Doc said should be below 200 (maybe because of age/safety?) ... T was 30 ... 

[Lilis]

Your level falls within the typical female follicular phase range (80–420 pmol/L), which is commonly targeted for feminization.

 

However, your doctor’s recommendation to keep it below 200 may be based on your individual needs or safety concerns, such as reducing the risk of blood clots, cardiovascular issues, or other potential complications. It could also mean they are taking into account any underlying health conditions you might have. Lower estradiol levels can still effectively support feminization goals while minimizing these risks.

 

Talk to your doctor.

[April Marie]

None of us here are medically qualified to advise you on what is causing your doctor to adjust your dosage level. Each of us is different and have different considerations/requirements/needs. Please discuss this with your doctor or seek a qualified second opinion if you don't have confidence in your current doctor. Your health is too important to do otherwise.

[Lilis]

@April Marie yes this is what I was trying to say, thank you 😊❣️

[MaeBe]

Firstly, how are you feeling? My doctor in MN wanted me under 300, now my WA doctor wasn’t phased when I was just over 400. There are recommendations/guidelines, but the studies that have govern them are done on cis women on synthetic hormones. More studies are coming out all the time, but it comes down to simply being in tune with your expectations (it’s a marathon not a sprint, remember), your body, and your doctor.

 

Some doctors want to see trough numbers, others peak, I just had draws done at trough for the first time ever before the new year because my MN doctor watched peak serum levels. Less to say, they were within cis levels but lower than they were at peak.

 

I will say I have been thinking about lowering my dose, more for preservation of supply than for worrying about numbers, but I was there with you early days. I started on a low dose, tolerated that well and had good numbers, titrated up, had good numbers, upped the dose again and my MN doctor was worried about high serum levels so I stepped them down. I haven’t changed my dose since. It’s working at the very least. Is it optimal? I don’t know if I could even quantify that!

 

Do you feel good? Are you seeing changes you want? Are you noticing anything you don’t? I think being open with yourself and your doctor will go a long way. If your doctor is literally doing thousands of patients worth of trans care, maybe they know what they’re doing but a lot of doctors are just going by the most basic level of information available. 

[MaeBe]

Also! Important to note, when discussing serum levels there is a big difference between pg/mL and pmol/L! So be sure to check, because one person’s 200 may not be another’s!

[AllieJ]

Blood levels are fraught with potential inaccuracies. They are greatly influenced by the time of the draw (Trough, peak, or mid as Maeve said) interactions with other medications and supplements, and how well your receptors are functioning. They measure available hormones in your blood, but that has little meaning as you may not be up taking these if your receptors are not at their peak. Oral Estradiol creates another hormone, Estrone, which can out compete Estradiol for receptors, but Estrone has very little feminising effect., so its net effect is to block receptors. Ideally, we would measure the hormones the other side of the receptors to assess their effects, but this isn't possible, so blood levels are used, but they are not very indicative.

 

There is a common misconception that more is better, but whatever Estradiol isn't taken up by receptors just makes expensive pee. My doctor admitted that my blood levels are mostly about his legal liabilities. Some doctors just take yearly levels, and treat according to how their patients feel. Some doctors rely heavily on 'Standards', most of which are reliant on old information from last century, from studies on a different form of hormones not in common use these days. And these studies were on Cis women. But we aren't 'standard' patients, we all have unique needs, and our care should be tailored to us. 

 

Unfortunately, due to our low numbers, there is no formal teaching and qualification in Trans Medicine. There haven't been specific methods or measurements developed for us, and even all the drugs we are prescribed are off label. (have not been tested or approved for this purpose) This means that our hormonal care has been cobbled together from whatever source was available, and delivered by doctors with no formal education. This may be the 21st Century, but Trans Care is still in its infancy, so it is in our interests to learn as much as we can and advocate for ourselves.

 

Hugs,

 

Allie 

[Abigail Genevieve]

16 hours ago, AllieJ said:

 Unfortunately, due to our low numbers, there is no formal teaching and qualification in Trans Medicine. There haven't been specific methods or measurements developed for us, and even all the drugs we are prescribed are off label. (have not been tested or approved for this purpose) This means that our hormonal care has been cobbled together from whatever source was available, and delivered by doctors with no formal education. This may be the 21st Century, but Trans Care is still in its infancy, so it is in our interests to learn as much as we can and advocate for ourselves.

 

Hugs,

 

Allie 

Which is some justification for talking about hormone treatments here.  Learn what you can where you can.   It's possible the pool of experience here is actually higher than the doctor's knowledge, which is scary and you need to understand exactly what is being subscribed and why.   I've seen people posting elsewhere that they self medicate because "the doctors don't know what they are doing".  I think those people don't know what they are doing.  There are risks, one being blood clots due to excess estrogen, that should be considered. 

I think there is a good bit of material posted on this forum that people undergoing hormonal therapy should familiarize themselves, material written by researchers, etc., who DO know what they are doing. 

[AllieJ]

With regard to blood clots, this from UCSF Trancare: (link to paper below)

Venous thromboembolism:

Data from studies of menopausal women suggest no increased risk of venous thromboembolism with the use of transdermal estradiol.[44] There are some data suggestive of increased thrombogenicity and cardiovascular risk when conjugated equine estrogens (Premarin) are used.[1,2] Data on the risk associated with oral 17-beta estradiol are mixed, with some suggesting no increased risk and others suggesting a 2.5 - 4 fold increased risk.[20,44] Even in the case of a 2.5 fold increase, the background rate for VTE in the general population is very low (1 in 1000 to 1 in 10,000), so the absolute risk increase is minimal.[3] There is weak evidence that sublingual administration of oral estradiol tablets might reduce thromboembolic risk due to a bypass of hepatic first pass, with one study showing 13 fold increase in peak estradiol blood levels but similar 24 hour area-under-the-curve.[45] A study of sublingual estradiol for the management of post-partum depression found that it was well tolerated, and the increased pulsatile nature of this route may more closely mimics natural ovarian estrogen secretion.[46] Sublingual administration requires insuring that the estradiol tablets are micronized; while most commonly available estradiol tablets are micronized, specifying as such on the written prescription (or consulting with the dispensing pharmacist) is recommended. Conversely, the overall risk of taking oral estradiol is low, and patients using sublingual estradiol may experience wide swings in hormone levels, inconsistent absorption, and more difficulty suppressing testosterone via feedback inhibition.

 

https://transcare.ucsf.edu/guidelines/feminizing-hormone-therapy 

 

Note the background rate is very low for clots and even with increased incidence from Micronised Etradiol (Bioidentical), the rate is minimal.

 

Hugs,

 

Allie 

[EasyE]

This is why I posted this here. Not to substitute for doctors but to get real-life experiences from a people I have grown to appreciate. Just adding to the book of knowledge I am trying to build as I navigate all of this ... I think my doc's suggestion of halving my dose is too steep. I don't want to lose what I have gained these past three months ... We have lots to talk about ....

[Jani]

I don't know (or want to know) what your levels are but try reducing intake little by little until you reach the level your doctor recommends.  He should have been more specific in giving you instructions. 

[Abigail Genevieve]

12 hours ago, EasyE said:

This is why I posted this here. Not to substitute for doctors but to get real-life experiences from a people I have grown to appreciate. Just adding to the book of knowledge I am trying to build as I navigate all of this ... I think my doc's suggestion of halving my dose is too steep. I don't want to lose what I have gained these past three months ... We have lots to talk about ....

Can you tell your doctor your concerns, and ask for some reading material (studies, whatever) that would help you understand the decision making better?  

[CairennTairisiu]

Several points to make here, so...

1. The notion of "too high" estrogen levels usually comes from a doctor who is poorly informed about current state of the art trans care. Post-GCS I had great difficulty sexually until my estrogen levels were increased. I had three different doctors telling me that, due to my age, my estrogen levels needed to be below 200 and preferably below 150. I suppose they were treating me like a cisgender post-menopausal woman. When I finally changed to an endocrinologist who specialized in trans medical care, she remarked that it was no wonder I was having sexual difficulties. We now keep my estrogen trough (the lowest point in my 5 day injection cycle) in the 275-325 window and it's usually 300-325.

2. More recent research shows that trans women have need of higher levels of estrogen even if we transition at later ages than cisgender women do. If you're doctor is not aware of this research, they're working from out-of-date assumptions.

Beverly Cosgrove debunked multiple myths about estrogen therapy for trans women along with links to references. If your doctor believes any of these myths, they need to be brought up to date.

 

Beverly's article also discusses and debunks myths about HRT and thromboembolism risks (which are essentially non-existent for bioiden al estrogen via injections or subdermal implants).

What Your Endocrinologist May Not Know About MTF Hormone Treatment

3. A trans woman's hormone profile most closely resembles that of a cisgender woman who has had a full hysterectomy. Under that scenario, there is NO increased cancer risk from estrogen only therapy and, indeed, there is a small decrease in risk of breast cancer unless your family has the genetic markers for breast cancer.

From The National Cancer Society: Menopausal Hormone Replacement Therapy And Cancer Risk

 

4. If you're on oral estrogen, there is some thromboembolism risk though it is low. Switching to subcutaneous injections, via a small gauge needle in the area around the belly button, is painless, simple, and easy, at least for me. Estradiol Valerate injection cycles longer than 7 days are bad because the estradiol will reach near zero levels by the 8th day and beyond resulting in mood swings. My own injection cycle is 5 days and the day before my injections is when my levels are down to that 275-325 range, which means for most of the cycle, my levels are far higher.
 

5. If your doctor is unaware that not only estrogen levels but the right estrogens in relation to other estrogens is critical for proper feminization, your doctor may again be lacking full education on HRT and its effects. One problem with oral estrogen is the conversion of estradiol to estrones and estrones are the least effective form of estrogen in terms of feminization. So you not only want estrogen levels monitored, your doctor should be looking at estradiol to estrone ratios as well.

 

The topic of HRT is complex but far too many doctors are not well informed about the needs of the trans community, especially of the needs of MTF transwomen.

 

I hope you get your HRT situation sorted out to your satisfaction. I hope the information provided above is useful.

[Heather Shay]

I guess I'm late to the post. Everythng that need be said, has. All I know is my nurse practitioner always monitors my E and has made sure my E is where it needs to be.

[EasyE]

I am using a nurse practitioner as well ... I reached out last week but haven't heard back, which is concerning... maybe she's just out of town? 

 

Another question: I do injections. Does anyone else have an issue where a few days after the injection site, there is a lump under the skin in that area? feel like a little tube. It goes away over time but maybe takes too long to go away for my liking? Makes me wonder if I am doing injections correctly? I asked NP about this and she didn't seem to have concerns ... again, looking for others' experience just so I can be better informed! 

 

Is it OK to inject in upper thigh as well? Or is belly better? 

 

[CairennTairisiu]

11 hours ago, EasyE said:

Is it OK to inject in upper thigh as well? Or is belly better? 

 

Intramuscular injection appears to be the most common form of injection at present, either in the buttocks or thigh most commonly. But subcutaneous injections into the fatty area around the navel are growing in popularity due to being easier, less painful, and, with additional research, are being shown to be better depot storage sites for estradiol in the body than muscular depot storage sites. Again, many doctors are not aware of subcutaneous injection techniques so may not be poised to offer them unless the patient helps inform the doctor.

 

As I've noted before elsewhere, I use a 20 gauge draw needle to draw estradiol valerate from the vial, then swap to 30 gauge (a truly tiny needle!) for injections, using syringes that allow changing the needle. The oil base for estradiol valerate makes injecting via a 30 gauge needle take several seconds, but again, it's painless and only rarely causes issues. And the only issue I've encountered in 6+ years doing it this way is occasionally I hit a small vein or artery and get a bit of bleeding. I usually take my alcohol prep pad that I previously swabbed the same area with before the injection, and simply apply pressure for 30-60 seconds and the bleeding stops. Bleeding is rare, however.

 

I've never encountered anyone having "nodule" like conditions under the skin after an injection so I have no comment on that aspect of what you are seeing with your current injection technique and regimen.

[EasyE]

thank you for the information @CairennTairisiu ... this sounds like what I do ... BIG needle to draw the E, tiny needle to inject, and it takes a few seconds to complete the injection ... the nodule thing doesn't hurt (occasionally itches for a day or so) but it feels weird when I massage the area having a lump there ... just don't want to create a bunch of scar tissue or something, or wondering if I am puncturing something I shouldn't with my injection, lol ... 

[MaeBe]

21 hours ago, EasyE said:

Another question: I do injections. Does anyone else have an issue where a few days after the injection site, there is a lump under the skin in that area?

It happens to me too, I think it's sub-dermal bruising. Sometimes they itch, likely from the healing process, but they tend to go away within a week. I alternate sides and sites for injections, so it doesn't cause an issue. I have hypothesized they are due to upsetting the tissue there, so I've tried to slow my injections a bit but I still get them.

 

As for bleeding, I rarely get "bleeders". Sometimes there is blood, but oftentimes it's just a little drip of E2 the bubbles up (my precious medication!) and a tinge of red. Seriously, I am more worried about leaking E than any bleeding. I'll toss a bandage over the injection site and when I take it off I tend to notice just a dot of blood there.

 

I use 18 and 23 gauge needles, the former for drawing and the latter for injecting. 30 is tiny! It probably helps with reducing the kind of localized trauma that can cause the "bumps", both in a smaller injection site and a very slow injection. I also tend to use the 45-degree method, instead of going in directly, which is supposedly the preferred method of doing SC injections.

 

Anyway, @EasyE, you're not alone. It's not harmful. They can be annoying, but generally of no consequence. I'd just avoid that area if I could for a couple/few weeks so it heals completely.

[CairennTairisiu]

6 hours ago, MaeBe said:

I use 18 and 23 gauge needles, the former for drawing and the latter for injecting. 30 is tiny! It probably helps with reducing the kind of localized trauma that can cause the "bumps", both in a smaller injection site and a very slow injection. I also tend to use the 45-degree method, instead of going in directly, which is supposedly the preferred method of doing SC injections.

 

My doctor originally recommended 28 gauge. I told her I went with 30 gauge instead. She said the same thing, "They're so tiny!" But that was  the point. :) I wanted them tiny to make the process as painless as possible.

P.S. I get 2-3 bleeders a year with about 70 injections a year (every 5 days).

[EasyE]

so just to follow up -- and thanks for the helpful insights!! -- the key is to go 45 degrees in and go more slowly? 

 

This may sound dumb, what is meant by 45? Come in from the side instead of straight down into the skin? Thanks, still a rookie here... 

 

Also my doc (NP actually) finally got back to me. She is adamant about reducing the dose. Said my E is way too high. Blah. For some reason that depresses me a little.

[CairennTairisiu]

@EasyE

 

This video explains injection angles fairly well.
 

And this video provides a demonstration of subcutaneous injections.
 

 

[EasyE]

these are great. thanks! it still is strange to feel the "nodules" in the area where I inject for several days afterward... i think my body is just weird! 

[MaeBe]

Just now, EasyE said:

these are great. thanks! it still is strange to feel the "nodules" in the area where I inject for several days afterward... i think my body is just weird! 

If yours is weird, so is mine. ;)