Really high Oestrogen levels

[LizK]

I saw my HRT Dr this morning  and once again we have a really high Oestrogen reading 2000 the last 4 have been.

1600,400,1800, 2000...we initially put it down to contamination but this time the first accusation was self medicating...These readings were done as follows...high reading noted (1600)repeat a week later(400) High reading noted(1800) repeat a week later (2000) even higher??

Readings prior to GCS on the same gel dose produced acceptable levels. Post surgical they seem to have gone haywire. The Dr didn't believe you could get levels as high as I did on just the amount I was prescribed so hence the accusation of either self medication or contamination of results...neither was true.

She wants me to try patches...I was on pain med patches for 2years and they caused me nothing but grief...my skin became very irritated, I had poor absorption levels and reactions to the glue. It was really itchy and a constant hassle. The way she put it too me she seemed to be initially convinced it was self medication but after a lot of talking I convinced her this was not the case. I think in the end she believed me and has ordered further blood tests to test for other abnormalities such as pituitary function.

I am totally bemused by the entire situation. I have not self medicated in any form....so the scary question remains what can cause a reading so high if no change to dosage has been made. Anyone got any suggestions?

Liz


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[judithlynn]

Hi Liz;
Have they checked your Prolactin levels?
Judith

[Jessica]

Wow Liz!  I hope they figure this out.

Hugs, Jess

[LizK]

Hi Liz;
Have they checked your Prolactin levels?
Judith

Hi Judithlynn

I have a blood test to be done that includes prolactin,Thyroid, liver, Kidney, Oestradiol and  Testosterone

High prolactin could certainly be the cause throwing the Oestrogen results out as could poor absorption. I know very little about any of it except what can be gleaned from a google search.

Thanks for the suggestion

Liz

[LizK]

Wow Liz!  I hope they figure this out.

Hugs, Jess

Yes Jess so do I.....but I really do object to be accused of self medication. Asking me is fine but once I tell you no I have not self medicated, then lets look for another cause rather than bang on about it. I reluctantly will use the patches but I  expect the levels returned to be just as high. This is a physical issue.


Hopefully I will have a better idea once I have had the blood tests.

Liz

[pamelatransuk]

Hello again Liz

I agree with Judith that this may be a Prolactin related problem as like you I had high E and high P but the subsequent quarter both came down. However my endo will be watching my P and it has been safe since.

After 6 months my E reading was 1662 (Intl) 453 (US) but after 9 months decreased to 442 (Intl) 120 (US).

I hope you soon find resolution.

Hugs

Pamela

[Dani]

Ladies,

When you mention Estradiol blood levels, you must also mention which units of measure you are talking about.

There are two widely accepted units, Picogram per mililiter (pg/ml) and picomole per liter (pmol/L). One is a unit of mass and the other is a specific number of molecules based on molecular weight. The numerical values are about 4 to 1 for the same blood level. This causes much confusion if we do not mention which units we are using.

Also, Estradiol blood levels will vary depending on how soon after administration you draw your blood sample. There will be highs (peak) and lows (trough) during the time between doses. It is best to take your blood sample right before your next scheduled dose to get a repeatable blood level. This will give you your low reading and after you have been taking your Estradiol for a few weeks or so, becomes very consistent and is a good measure of where you are in terms of Estradiol levels. Taking your blood sample at any time between applications will give you a reading of anywhere between the high and low and cannot be used for any kind of evaluation purpose.

When it comes to using a gel based Estradiol, it is difficult to measure a consistent amount for application each time you apply the medication. Patches have one good point in that you will get the same dose each time you put a new patch on your skin.

Several people here have reported that some patches do irritate their skin, while other manufacturers of the same medication do not cause this problem. It just depends on your specific skin as to how you will react. Applying the next patch to a different site often helps avoid this problem if it happens.

[LizK]

Hello again Liz

I agree with Judith that this may be a Prolactin related problem as like you I had high E and high P but the subsequent quarter both came down. However my endo will be watching my P and it has been safe since.

After 6 months my E reading was 1662 (Intl) 453 (US) but after 9 months decreased to 442 (Intl) 120 (US).

I hope you soon find resolution.

Hugs

Pamela

Hi Pamela

I will be getting the bloods done as requested by my Dr. i can never remember which way they do it here in Australia but its the smaller measure so maybe the us measurement. They  are looking for levels between 3-400. so having it way up in the 2000 is something I have never had before. I guess we will see after my next blood test.

Thanks for your suggestion

Liz


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[josie76]

I take the estradiol pills by oral absorption. My last blood test was done along with a fasting CBC and lipid panel. I don't know if fasting makes a difference. I took my morning E pill and had blood drawn about 2 hours later. My test was 1237pg/ml, so really on the high side. I take 3 pills a day spaced about 4 hours apart.

Honestly I don't know if that is normal for he oral pill or not. When I started HRT I was on a dose 1/6 of my current dosage and pre-orchi. My levels were in the 80pg/ml back then.

[LizK]

Ladies,

When you mention Estradiol blood levels, you must also mention which units of measure you are talking about.

There are two widely accepted units, Picogram per mililiter (pg/ml) and picomole per liter (pmol/L). One is a unit of mass and the other is a specific number of molecules based on molecular weight. The numerical values are about 4 to 1 for the same blood level. This causes much confusion if we do not mention which units we are using.

Also, Estradiol blood levels will vary depending on how soon after administration you draw your blood sample. There will be highs (peak) and lows (trough) during the time between doses. It is best to take your blood sample right before your next scheduled dose to get a repeatable blood level. This will give you your low reading and after you have been taking your Estradiol for a few weeks or so, becomes very consistent and is a good measure of where you are in terms of Estradiol levels. Taking your blood sample at any time between applications will give you a reading of anywhere between the high and low and cannot be used for any kind of evaluation purpose.

When it comes to using a gel based Estradiol, it is difficult to measure a consistent amount for application each time you apply the medication. Patches have one good point in that you will get the same dose each time you put a new patch on your skin.

Several people here have reported that some patches do irritate their skin, while other manufacturers of the same medication do not cause this problem. It just depends on your specific skin as to how you will react. Applying the next patch to a different site often helps avoid this problem if it happens.

Hi Dani

The unit of measure we use here in Australia is pmol/l (according to the labs website)so being up around the 2000 makes my Dr very unhappy. Even with the difference over the day in levels and possible slight differences in daily dosing it should not be up as high as what it is reading.

I have only recently had this issue despite using this particular dose for  over 12months and being on Gel for over 18months. I suspect that the bloods I am having done will reveal the cause.

I was more furious about not being believed regarding the self medication and made this crystal clear to her.

Thanks for your advice and suggestions. I did suggest to her that it was  about the testing timing and possibly even the lab. Once you eliminate self medicating there really are limited choices as to why such a high reading other than something like prolactin or similar condition.

My track record with patches is not great at all but as my Dr was getting bent out of shape about it so I capitulated. Time will tell as far as if I have any issues. I also detest changing methods of delivery because each time this has happened there has been some kind of drama about levels and or dosage...one Dr wanted to keep me around 180 -200. I will accept levels between 350 and 400. Lower than 200 and I know from my own experience I do not feel well.

Once again thank you for taking the time to make such an in-depth and information filled post I really do appreciate it.

Liz




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[Dani]

...The unit of measure we use here in Australia is pmol/l ...


... there has been some kind of drama about levels and or dosage...one Dr wanted to keep me around 180 -200. I will accept levels between 350 and 400. Lower than 200 and I know from my own experience I do not feel well.

With blood levels in that range, your doctors are really looking at your trough or lowest level for the time between dose applications. Is it possible to schedule your next blood draw right before your next Estradiol application?

Also, a targeted blood level of 200 pmol/L seems to me to be a bit low. My own doctor has me in the range of 80-100 pg/ml. My last measurement was 108 pg/ml. At other times, it was as low as 80 pg/ml. Given the usual 4 to 1 conversion factor, I would say that your desired blood level of 400 pmol/L is right where it should be for the lowest reading just before your next dose.

Estradiol gel has a reported half-life of about 36 hours, so your blood levels should not vary that much over one day. How often are you applying the gel? This will make a difference if you are applying less than once daily.

One last point, many people, especially in the first few years of transition, need a slightly higher blood level in order to relieve the stress of gender dysphoria. Just trying to duplicate normal female Estradiol blood levels is often not enough for the emotional support we need.

Here in the US some of us are beginning to talk about transition doses as opposed to maintenance doses. The transition doses are higher in order to relieve gender dysphoria and after a year or so, some Endocrinologists recommend a maintenance dose that does duplicate normal female blood levels, mainly to lessen the risk of cardiac complications.

[LizK]

Thanks Dani

I use the gel once a day and my Dr is insistent that I do not have my bloods done until at least 2hrs after putting the gel on. I don't get it myself but I now have a patch on(starting to itch already) so we will see. The last patches I used I had a very elaborate rotation scheme as they had to be changed every 2 days. I found by staggering them I was able to manage the recovery of my skin.

I will be 4 years(I think...I can't see my dates when posting from Tapatalk) in May this year and my GD has been severely reduced to negligible levels after surgery last year so I agree with you that 400 is an acceptable level.

I really think she thinks I am self medicating because she just would not let it go until I became irritated after the third time I denied it.

I hear you about the maintenance levels  v transition levels. I am not sure where I would fit in but I suspect I would be closer to needing maintenance levels. I am tired of this whole issue and hope we can make progress with the blood tests.

Thankyou for your well thought out post and I certainly agree with much of what you have said especially when we are talking about transition vs maintenance doses.

Liz


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[Colleen_definitely]

Are you applying the gel shortly before the blood draw?  I imagine gel has a blood level spike similar to pills and you might be seeing this effect.

[LizK]

The last test was 4 hrs after gel application...my Dr is insistent on testing after and not before as some have suggested. I am not entirely sure why but I will oblige her



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[Rachel292]

I changed from Evorel and finasteride , to Sandrena and Decapeptyl last spring (UK) . I we upped the dose then during a heatwave my results went crazy 1700 , so dr ordered a retest = 2400 , I reduced to a smaller dose and about 6 weeks later it was 1450 , so I reduced it further , result then 779 pmol/l (i've been on that dose since).
I was told by a friend that the dosage and it's takeup is not necessarily proportionally linear with regard to dose.
Also i found a paper (unfortunately I do not have it to hand) looking at how 'heat' can affect transdermal gel meds (written for CIS women having hrt) .
basically , it can depend on ambient air temperature , skin temperature and blood flow near the surface , and also is/are your pores are clean/open. Each of these factors affecting how efficient the absorption is.
If you are hot = high blood flow near the surface as body tries to cool itself, open pores, it goes in easier , air and skin temperature affect the viscosity of the gel. etc.
I was having a hot shower or bath immediately prior to applying gel.
I now shower before bed and apply in the morning, and get consistent results.
Blood tests after 4-6 hours

[pamelatransuk]

Dani/Liz

I agree that there often is confusion between pg/ml (US) and pmol/L (Intl) and therefore I usually quote both after converting from pmol/L used here in UK and Australia to pg/ml for the benefit of my friends in US.

The conversion as you say is around 4:1 but for the sake of precision and for the benefit of clarity for all readers, I attach KathyLauren's "Unit Conversions" thread from last February in which she confirmed arithmetical conversion methods for E&T and in which I added in June arithmetical conversion method for Prolactin.

https://www.susans.org/forums/index.php/topic,234373.msg2104271.html#msg2104271

Hugs to you both

Pamela  xx

[LizK]

So by the calculations above my levels in USA terms went like this

435 pg/ml
108
490
544

Liz

[pamelatransuk]

Hello Rachel and welcome back to Susans.

I note from your reintroduction that you live in Wiltshire in UK and that you only have a birthday every four years and are 62 at present; so I assume you will be 64 on next leap year day Feb 29th 2020? I am also from UK (just East of Liverpool) and I was 64 last week.

I think we may have some other things apart from age in common. I crossdressed and bodyshaved all my adult life and finally took positive action in 2017 by seeking therapy followed by HRT in February 2018. I shall be publicly transitioning later this year. Another shared aspect is that we are both mainly asexual or to be precise I am asexual with minor lesbian tendencies. There is no doubt that there are substantially more asexual people in the transgender community than in the population as a whole. Personally I am content being asexual and truly expect to remain so but after public transition, I leave any option open.

May I ask did you also choose to go private in UK and if so did you happen like me to choose GenderGP please? I am with GenderGP and again like you I started on Evorel Patches and Finasteride and wef last August I added Decapeptyl/Triptorelin.

Nice to meet you and after you respond to me, I shall hand back this thread to Liz.

Hugs to you and to Liz and others.

Pamela  xx

[PurplePelican]

Only 3 of those are even vaguely high and the 1st one is about 100-120 over my standard level. None is really high enough to cause serious concern.

[Rachel292]

.........
I shall be publicly transitioning later this year. Another shared aspect is that we are both mainly asexual or to be precise I am asexual with minor lesbian tendencies. There is no doubt that there are substantially more asexual people in the transgender community than in the population as a whole. Personally I am content being asexual and truly expect to remain so but after public transition, I leave any option open.

May I ask did you also choose to go private in UK and if so did you happen like me to choose GenderGP please? I am with GenderGP and again like you I started on Evorel Patches and Finasteride and wef last August I added Decapeptyl/Triptorelin.

Nice to meet you and after you respond to me, I shall hand back this thread to Liz.

Hugs to you and to Liz and others.

Pamela  xx

Good luck with your public transition. I never actually did a big, "I'm transitioning" take it or leave it. It was more a case of reveal that I was Transgender as I was going out 'crossdressed' (as I described it at the time). But as time progressed , The more I came out each next step was inevitable. I would now consider 'crossdressing' as going out dressed as a man, and I find the thought very difficult.
Yes I went private ,  with HW (long story not for this thread)

back to the thread: My bloods and meds are now stable, and I now get them done about every 3 months. Hopefully my wait for surgery won't be long now.