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Some advice if poss on my oestrogen level

Started by Rachel Richenda, December 06, 2016, 08:32:14 AM

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R R H

Hi everyone,

Two months ago the GiC reset my estrogen dose to bring me 'into therapeutic range.' This is because they thought it was a bit low at around 277 pmol/L when tested on 15th September following my orchiectomy in July.

The dose I was put on seemed rather high to me and I had some uncomfortable side effects including morning sickness, heart racing, insomnia etc. A blood result taken on 16th Nov just before I reduced the dose for my FFS surgery has revealed the level to be 577 pmol/L which pretty much confirms what I thought: that my level was rising rapidly and much too high for comfort.

Now my GP and surgeon want to re-set my estrogen dosage. My next appointment at the GiC isn't until 11th Jan so they want to set things right over the next 5-6 weeks. My feeling is to aim for an estrogen level somewhere between 277 and 577 pmol/L. Any advice on that very gratefully received.

NB I have next to zero testosterone because of my orchiectomy.

xx
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AnonyMs

I'm on implants and I get new ones when my level goes below 800pmol/L. Most of the year its way above that.

I don't seem to get any side effects apart from feeling good. Insomnia perhaps but I think that's stress.
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KayXo

I'm on injections and my levels are anywhere between 4,500 and 14,000 pmol/L. No side-effects, feel good and actually feel better relative to when my levels were lower, around 1,000-2,000 pmol/L. To each their own, I guess.

Just so you know, ciswomen's levels range anywhere from 73 to 2,400 pmol/L during a typical menstrual cycle. Levels can even get as high as 275,000 pmol/L during pregnancy.

The problem with blood measurements is that levels fluctuate from one moment to another so really, how accurate are they? All you know is you felt better on a lower dose so maybe let your doctor know this and go from there.

When I was on pills, the higher the dose, the worse I felt (insomnia, irritability, heart palpitations) but I later realized, based on my experience with injections, that these effects were not due to higher levels but either to the fillers in the pills OR the fact that orally, estrone (a weak estrogen) is significantly higher relative to estradiol (the most potent form of estrogen) so that it is quite possible that the very high concentrations of estrone were blocking estradiol or that perhaps estrone itself was having a negative effect on me, not being properly balanced by estradiol.

So, what I'm saying is you could also try asking your doctor to change from pills, for instance, to another route of administration. Hopefully, you find what works best for you. :)
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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R R H

Those ranges seem terribly high to me?
http://emedicine.medscape.com/article/2089003-overview

Which suggests that even in Periovulatory phase the normal female range is 96-436 pg/mL
My reference range in blood results for a cis female pre-menopause is listed on the blood results at 72-1309 pmol/L

There are Boston University guidelines to which I won't link because it discusses dosages, but their recommendation is to to reduce androgens:
'A practical target for hormone therapy for transgender women (MTF) is to decrease testosterone levels to the normal female range (30–100 ng/dl) without supra- physiological levels of estradiol (<200 pg/ml) by administering an antiandrogen and estrogen.'

I put the bit in bold because that's interesting to me. I have zero levels of testosterone: 1.2 ng/dl which is 0 nmol/L following my orchiectomy. Feminising effects from that are clear: absence of body hair, breast growth, skin and muscles changes etc. The absence of any androgenising in my case must mean a lower input of estrogen makes complete sense. Surely?

I know every individual is different but my rising estrogen level at 577 pmol/L was making me feel ill. What gets me slightly about this is the extent to which we are left to influence our physicians on the decision-taking. I know, for example, that the moment I present those results to my GP he will tell me to drop the dosage. But shouldn't it ideally be the medics guiding us, not the other way around?

So much of transitioning remains a grey area, which is one of the many reasons Susan's forum is so utterly fantastic.
  •  

kelly_aus

I had much the same symptoms when I first moved to my final dose of Progynova.. It lasted about 6 weeks until I adjusted to it.. My gyno at the time told me it was not something to worry about as long as it wasn't persistent..
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KayXo

Quote from: Rachel Richenda on December 06, 2016, 06:35:51 PM
Those ranges seem terribly high to me?
http://emedicine.medscape.com/article/2089003-overview

Which suggests that even in Periovulatory phase the normal female range is 96-436 pg/mL
My reference range in blood results for a cis female pre-menopause is listed on the blood results at 72-1309 pmol/L

Lab ranges vary.

Am J Med. 1995 Aug;99(2):119-22.

"normal postmenopausal plasma concentration less than 200 pmol/L (less than 54 pg/ml); normal premenopausal physiologic ranges: luteal 368  to 1,100 pmol/L (100 – 300 pg/ml), midcycle 785 to 1,840 pmol/L (214 – 501 pg/ml), follicular 74 to 368 pmol/L (20 – 100 pg/ml) for estradiol"

Maturitas. 2005 Apr 11;50(4):266-74.

"Normal concentrations obtained via a fluorometric method, vary with the phase of the woman's menstrual cycle. During the follicular phase, they range from 35 to 184 pg/mL; during the ovulatory phase, from 191 to 540 pg/mL; and during the luteal phase, from 40 to 228 pg/mL; at menopause, the 17β-estradiol level decreases to about 35 pg/mL. »

http://www.specialtylabs.com/clients/outreach/web/site/details.asp?tid=44312&cid=301&keyword=

Follicular: 21 - 251 pg/mL
Mid Cycle: 38 - 649 pg/mL
Luteal: 21 - 312 pg/mL

http://www.ilexmedical.com/files/PDF/Estradiol_ARC.pdf

"Normal estradiol levels are lowest at menses and into the early follicular
phase (25-75 pg/mL) and then rise in the late follicular phase to a peak
of 200-600 pg/mL
just before the LH surge, which is normally followed
immediately by ovulation. As LH peaks, estradiol begins to decrease
before rising again during the luteal phase (100-300 pg/mL)."

"If conception occurs, estradiol levels continue
to rise, reaching levels of 1,000-5,000 pg/mL during the first trimester,
5,000-15,000 pg/mL during second trimester, and 10,000-40,000 pg/mL
during third trimester. 6-8"

My lab's values:

Ovulatory: 315-1828 pmol/L (86-498 pg/ml)

Quote'A practical target for hormone therapy for transgender women (MTF) is to decrease testosterone levels to the normal female range (30–100 ng/dl) without supra- physiological levels of estradiol (<200 pg/ml) by administering an antiandrogen and estrogen.'

Levels arbitrarily chosen and without consideration for individual variation and sensitivity as well as blood measurements which aren't even accurate because they fluctuate in time.

Aust NZ J ObTtet Gvnaecol 1998. 38: 3: 45

"it is difficult to define a therapeutic drug concentration (...) because patients may vary in their oestradiol requirements (...). In addition, serum oestradiol levels may not necessarily reflect tissue oestradiol levels."

CLIMACTERIC 2005;8(Suppl 1):3–63

"Even though there is a significant correlation between
the serum concentrations of estradiol and their
clinical effects, e.g. on hot flushes or bone mass,
the serum level of an individual woman does not
predict the therapeutic effect. As shown in Figure 1,
the number of hot flushes differs largely in
patients who showed identical estradiol levels
during transdermal hormone therapy1. This casts
considerable doubts on the usefulness of regular
measurements of hormone levels for the prediction
or control of a therapeutic success.
"

Maturitas, 12 (1990) 171-197

"When the serum concentrations of natural or synthetic sex steroids are measured
at short time-intervals after administration and repeatedly during long-term
treatment, it becomes obvious that there are large intra-individual and interindividual
variations. This holds true for both the contraceptive steroids and the natural
oestrogens and does not apply solely to the oral route. Long-term studies
indicate that an important influence is exerted by predisposing factors, particularly
the metabolic capacity of the liver, on the pharmacokinetics of sex steroids.
Large variations in oestradiol and oestrone levels can be observed in an individual
woman from day to day or from hour to hour, even during transdermal therapy
with oestradiol
"

QuoteI have zero levels of testosterone: 1.2 ng/dl which is 0 nmol/L following my orchiectomy

More precisely, 0.04164 nmol/L but very low indeed, 0 if we round it up. My total T level is around 8 ng/dl. I'm also post-op. Despite very low serum T levels, DHT and T levels in tissue may still be somewhat significant.

Prog Brain Res. 2010;182:321-41.

"after castration, the 95-97% fall in serum testosterone does not reflect the 40-50% testosterone (testo) and dihydrotestosterone (DHT) made locally in the prostate from DHEA of adrenal origin."

QuoteFeminising effects from that are clear: absence of body hair, breast growth, skin and muscles changes etc. The absence of any androgenising in my case must mean a lower input of estrogen makes complete sense. Surely?

Theoretically, makes sense but still, we can't predict in advance. You may indeed need very little E or more. Trial and error, and will be determined TOGETHER by you and your doctor.

QuoteI know every individual is different but my rising estrogen level at 577 pmol/L was making me feel ill.

Higher levels orally were making me ill. Much higher levels by injections make me feel good. Trial and error. It wasn't about the levels but had to do with something else, clearly.

QuoteWhat gets me slightly about this is the extent to which we are left to influence our physicians on the decision-taking. I know, for example, that the moment I present those results to my GP he will tell me to drop the dosage. But shouldn't it ideally be the medics guiding us, not the other way around?

I believe the ideal is a partnership between doctor and patient. My doctors have told me they learn a lot from their patients and value their feedback.
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
  •  

AshleyP

Quote from: Rachel Richenda on December 06, 2016, 06:35:51 PM
What gets me slightly about this is the extent to which we are left to influence our physicians on the decision-taking. I know, for example, that the moment I present those results to my GP he will tell me to drop the dosage. But shouldn't it ideally be the medics guiding us, not the other way around?

I totally agree with Kay's opinion that "the ideal is a partnership between doctor and patient." I try to be an informed patient and would change doctors if I didn't feel like my input wasn't carefully considered and discussed.

Quote from: Rachel Richenda on December 06, 2016, 06:35:51 PM
So much of transitioning remains a grey area, which is one of the many reasons Susan's forum is so utterly fantastic.

I totally agree with you on that.

All the best,
--AshleyP



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R R H

Quote from: AshleyP on December 06, 2016, 09:44:57 PM
I totally agree with Kay's opinion that "the ideal is a partnership between doctor and patient." I try to be an informed patient and would change doctors if I didn't feel like my input wasn't carefully considered and discussed.

All the best,

--AshleyP


Thanks Ashley.

A slight complication in the UK is that there are often four parties involved:

GiC - which advises and recommends dosages to ...
GP's - who do the actual prescribing of medication and conducting of blood tests
Surgeons - who have control over dosage levels either side of surgery
Patients
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