I thought i would ask this question as my Endo has given me a pretty routine prescription of Spiro and oral Estrogen once a day. As I live in Canada, I'm concerned about the potential for second rate medical advice. If there is a better combination of medications, or delivery methods, i'd like to know about it. Better results would be worth some extra effort or money in my opinion.
That is a fairly standard starting regimen. They are almost always going to start you off slow so your body has time to change hormonal gears.
You're getting the same advice I'm getting in Washington, DC, from a clinic that specializes in care for LGBT folks and which routinely manages HRT.
Once you're over the beginning bit look into estrogen implants.
Kind of leading and trailing edge at the same time, they have been around for decades and are still the best.
They don't offer implants in Canada BUT you can get injections from compounding pharmacies. I did better on injections vs oral. Be sure to drink plenty of water and eat enough salt on Spiro, limiting overall potassium intake. I'm from Canada as well. :)
Quote from: KayXo on April 02, 2016, 12:04:01 PM
They don't offer implants in Canada BUT you can get injections from compounding pharmacies.
No implants at all, not even for cis-women?
No. Not my knowledge, at least.
I'd be pretty upset if I couldn't get implants. Not sure what I'd do.
There's a supplier in the USA of implants. Maybe they have customers in Canada and could put you in touch with them (or vice-versa)?
I wouldn't want implants for three reasons:
1) I'm doing so well with injections and it's convenient, barely any hassle. Why fix if it ain't broken?
2) Too steady levels from implants may cause desensitization as suggested by one study
3) I don't heal well and I don't want another scar from implant insertion. I also hate any kind of anesthesia, local or otherwise.
Let Christina know by PM but I'm personally not interested. Thanks though. :)
What's a compounding Pharmacy, and how does one get them to provide injectables? Prescription?
A compounding pharmacy is a pharmacy that compounds hormones or medications suited to your specific needs. You need a prescription from a doctor. I will send you the link.
Quote from: AnonyMs on April 02, 2016, 12:32:31 PM
I'd be pretty upset if I couldn't get implants. Not sure what I'd do.
There's a supplier in the USA of implants. Maybe they have customers in Canada and could put you in touch with them (or vice-versa)?
Here is complete information for a doc or endo to start implants:
https://www.susans.org/forums/index.php/topic,200276.msg1780555.html#msg1780555
There are compounding pharmacies in the us which deliver worldwide. A source is included in the link.
There are strategies with implants and injections to drive estrogen well into the female range which all by itself, via a feedback loop, can lower testo to female levels. So no anti androgens are needed.
Many people have good results on injections. Using a weekly insead of a biweekly cycle makes for less ups and downs in levels and could help keep mood more steady.
Concerning desensitisation by very high and stable levels with implants there might be strategies ...
some endos use bioidentical progesterone or Proluton-Depot shots to compliment estrogen.
Another might be to avoid too high levels .
*hugs*
Quote from: Laura_7 on April 03, 2016, 01:51:08 PM
Another might be to avoid too high levels .
The problem is not high levels but rather the steadiness of levels. Otherwise, pregnant women would become desensitized (clearly not the case) to hormones as they are VERY high during pregnancy. And besides, what would be the point of the body producing such high levels if cells stopped responding?
Quote from: KayXo on April 04, 2016, 11:02:48 AM
The problem is not high levels but rather the steadiness of levels. Otherwise, pregnant women would become desensitized (clearly not the case) to hormones as they are VERY high during pregnancy. And besides, what would be the point of the body producing such high levels if cells stopped responding?
Someone reported from their endo they do no further implants above a certain level of estrogen.
So there seems to be a threshhold for the effect.
Well it seems nobody is really sure about desensitisation. It seems it occurs when many receptors are permanently occupied by the same molecules. A change in levels would result in at least a small change in molecules. Also if levels are not really high. There should be an amount of come and go.
Additionally bioidentical progesterone might play a role, maybe by replacing some of the molecules on receptors.
It is present in cis women.
So the threshhold for desensitisation would be higher, higher levels of estrogen would be needed for desensitisation.
Some endos use high levels of estrogen with implants together with bioidentical progesterone and without anti androgen.
So ... maybe its possible to switch to implants if:
-the dose is not too high
-bioidentical progesterone is added
-or the dose is high and the levels are jiggled from time to time.
Flaxseed have a certain amount of phytoestrogen. It also stays in the body for a while but makes for a weaker effect than estrogen.
Introducing for example some freshly blended flaxseed (don't overdo amounts... if in doubt ask your doc) from time to time might be a remedy.
It should make for some replacement on receptors, with a falling effect over some time.
Just talk it through with your doc.
*hugs*
Quote from: Laura_7 on April 04, 2016, 12:02:43 PM
Someone reported from their endo they do no further implants above a certain level of estrogen.
So there seems to be a threshhold for the effect.
Is this the reason why endo didn't want levels above a certain threshold? And if so, is endo's statements true? supported by studies? by observations? Does not seem like it.
My levels go up to 4,000 pg/ml, pregnant women's up to 75,000 pg/ml. There is no desensitization.
Steadiness of levels is more likely to be the culprit.
Quote from: KayXo on April 04, 2016, 10:34:29 PM
Is this the reason why endo didn't want levels above a certain threshold? And if so, is endo's statements true? supported by studies? by observations? Does not seem like it.
My levels go up to 4,000 pg/ml, pregnant women's up to 75,000 pg/ml. There is no desensitization.
Steadiness of levels is more likely to be the culprit.
Studies often are conducted when there is enough of a market presumed.
So in the absence of studies observations and comments of experienced endos can be regarded.
One endo has made the experience that above 1000pmol with steady levels from implants there might be a higher probability of desensitisation. He uses implants on clients with a low probability below that level regularly.
So there is a treshhold. The study you cited also mentions levels above that with those persons who had symptoms. With all other persons there were no symptoms.
*hugs*
Quote from: Laura_7 on April 05, 2016, 05:47:04 AM
Studies often are conducted when there is enough of a market presumed.
So in the absence of studies observations and comments of experienced endos can be regarded.
But there are studies on women who are on implants. Endo's assertions are only opinions, speculations. They can be wrong.
QuoteOne endo has made the experience that above 1000pmol with steady levels from implants there might be a higher probability of desensitisation. He uses implants on clients with a low probability below that level regularly.
Blindly trusting is not something I do, sorry. If indeed levels above 1,000 pmol/L caused desensitization, then please explain why in pregnant women or in women like myself who are on injectables or even men with prostate cancer with levels far exceeding 1,000 pmol/L on patches (steadier levels but still less steady than pellets) do not experience any desensitization.
QuoteSo there is a treshhold. The study you cited also mentions levels above that with those persons who had symptoms. With all other persons there were no symptoms.
Earlier, you said in the absence of studies but now you yourself admit there is a study. In that study, there was no other group, just that group with high levels. No such thing as "with all other persons, there were no symptoms".
Quote from: KayXo on April 05, 2016, 08:12:16 AM
But there are studies on women who are on implants. Endo's assertions are only opinions, speculations. They can be wrong.
There are no studies concerning higher levels and desensitisation concerning bioidentical estrogen implants.
Even the study you provided speaks of presumably desensitisation.
Concerning studies its very important to exactly read what they say.
Some endos presume adverse effects from higher levels of estrogen. But studies concern non bioidentical estrogen and oral intake.
Cis people have higher levels without adverse effects.
Same with Progesterone. There is bioidentical progesterone and other forms which have different effects.
Quote
Blindly trusting is not something I do, sorry. If indeed levels above 1,000 pmol/L caused desensitization, then please explain why in pregnant women or in women like myself who are on injectables or even men with prostate cancer with levels up to 2,500 pmol/L on patches (steadier levels but still less steady than pellets) do not experience any desensitization.
Its a AND connection. Higher levels AND very stable levels. Otherwise EVERY person with implants would have this effect.
The study you provided cites affected persons only with high levels.
Levels in pregnant woman vary to a degree also with time of day and levels from patches fall off during a few days until they need to be replaced.
Quote
Earlier, you said in the absence of studies but now you yourself admit there is a study. In that study, there was no other group, just that group with high levels. No such thing as "with all other persons, there were no symptoms".
The study you provided was not conducted to look at desensitisation. They even speak of presumed desensitisation.
The majority of people had no adverse effects.
Those who had adverse effects had raised levels.
*hugs*
Quote from: Laura_7 on April 05, 2016, 08:30:19 AM
There are no studies concerning higher levels and desensitisation concerning bioidentical estrogen implants.
Even the study you provided speaks of presumably desensitisation.
The study in question...
CLIMACTERIC 2005;8(Suppl 1):3–63
"There are report
s on recurrence of hot flushes within 3–16 weeks after implantation of (...) estradiol, although (or because?) the estradiol levels were measured in these women to be extremely high (between 400 and 1000 pg/ml)149.
The underlying mechanism is unknown;
perhaps the symptoms are due to a desensitization phenomenon by extremely high estrogen levels causing the recurrence of estrogen deficiency symptoms."
These are high levels, in excess of 1,000 pmol/L and desensitization is reported, more than once. Authors admit they don't know why this happens and suggest a reason why but that is far from certainty. One could just as well speculate that it is because of steady levels because the same thing doesn't occur in pregnancy or in individuals who are on injectables/patches with very high levels but with less steady levels.
From study:
"In contrast to the transdermal treatment with estradiol which showed large intra- and interindividual variations, the administration of estradiol pellets was associated with
relatively small fluctuations during the 6 months after implantation"
QuoteConcerning studies its very important to exactly read what they say.
Indeed and I have done just that. :)
QuoteIts a AND connection. Higher levels AND very stable levels. Otherwise EVERY person with implants would have this effect.
The study you provided cites affected persons only with high levels.
Levels in pregnant woman vary to a degree and levels from patches fall of during a few days until they need to be replaced.
In all cases, there are high levels but in the case of pellets where desensitization is noted, levels are more stable. By simple deduction, one can conclude that steadiness is the problem, not high levels.
Quote from: KayXo on April 05, 2016, 08:42:21 AM
In all cases, there are high levels but in the case of pellets where desensitization is noted, levels are more stable. By simple deduction, one can conclude that steadiness is the problem, not high levels.
It needs to be both otherwise there would be a high incidence of people with symptoms with less higher levels.
This is not the case.
Most people have no adverse symptoms.
They even speak of bioidentical estrogen implants very favourably.
Bioidentical estrogen implants simply would not be around if it would lead to a desensitisation on a large scale.
*hugs*
There is one document in particular that asserts that "Tachyphylaxis can occur with all dosages and is more common with repeated implants."
And from another article, it states this is one of the risks associated with implants.
And also from another article "This condition, known as tachyphylaxis, seems to be confined mainly to women who take oestrogen implants"
Quote from: KayXo on April 05, 2016, 10:39:29 AM
There is one document in particular that asserts that "Tachyphylaxis can occur with all dosages and is more common with repeated implants."
And from another article, it states this is one of the risks associated with implants.
And also from another article "This condition, known as tachyphylaxis, seems to be confined mainly to women who take oestrogen implants"
Clin Endocrinol (Oxf). 1995 May;42(5):445-50.
An audit of oestradiol levels and implant frequency in women undergoing subcutaneous implant therapy.
Buckler HM1, Kalsi PK, Cantrill JA, Anderson DC.
Abstract
OBJECTIVES:
The aim of the study was to review our long-term use of subcutaneous oestradiol (E2) implant therapy for the treatment of climacteric symptoms in post-menopausal women. On the grounds that the aim is to restore premenopausal serum E2 levels, our declared clinical policy is not to repeat implants even in the presence of symptoms if serum E2 levels are > 400 pmol/l. Therapy was with 50 mg E2 implants inserted subcutaneously in the lower abdominal wall.
DESIGN:
All women who had attended the gynaecological/endocrinological clinic who had received subcutaneous E2 implants for the relief of climacteric symptoms between December 1981 and 1992 were included.
RESULTS:
Between December 1981 and December 1992, 275 women received a total of 759 50 mg E2 implants. The median length of implant therapy was 34.2 months (range 3.7-109.5 months), and the median number of implants per patient was 4 and ranged from 1 to 13. One hundred and twenty-nine women had more than four implants and their mean recorded serum E2 level was 425 +/- 187 (mean +/- SD) pmol/l; the mean level over the first 24 months of therapy was 408 +/- 157 pmol/l. This was not different from the mean value of the remaining period of therapy (439 +/- 168 pmol/l). Following the second implant there was no significant progressive rise in serum E2 with time and implant number and the mean E2 level per patient was no higher in those patients who received implants more frequently. The mean time between the first two implants was 9.7 +/- 0.4 months and between subsequent ones was 11.7 +/- 0.5 months. After the first two implants there was no progressive change in this interval with time.
CONCLUSION:
This study shows that effective, safe and sympathetic management of women with oestrogen deficient symptoms may be achieved by use of two criteria to determine re-treatment; the return of symptoms, and a serum E2
level no higher than 400 pmol/l. Once therapy is established, E2 implants may need to be prescribed only on an annual basis. There appears to be no justification for giving E2 implants more frequently as this policy achieves satisfactory (physiological) premenopausal E2 levels and good symptomatic relief
without any evidence for accumulation of E2 or 'tachyphylaxis'.PMID:
7621560
There are endos who consider values of 1000pmol still safe.
From another source:
Levels of E2 at which Implants are advisable.
Most women feel well with E2 levels between 300 and 600 pmols/litre but there is great individual variation.
Even the experts disagree about the desired upper level at which new implants should be inserted - 350 pmols/litre or 400 pmols/litre are thought appropriate by some. Others feel that 600 pmols/litre is the level below which many women start to get symptoms of oestrogen withdrawal.
Once therapy is established, E2 implants may need to be prescribed only on an annual basis.This is what some people have described.
Due to older implants still giving off levels new implants may be needed only half a year or a year later.
A huge advantage for some people, needing no estrogen meds in the meantime.
With some people the levels of estrogen are enough to drive down testo without anti androgen.
Post op it is not an issue.
*hugs*
Quote from: Laura_7 on April 05, 2016, 11:51:38 AM
Clin Endocrinol (Oxf). 1995 May;42(5):445-50.
An audit of oestradiol levels and implant frequency in women undergoing subcutaneous implant therapy.
Buckler HM1, Kalsi PK, Cantrill JA, Anderson DC.
On the grounds that the aim is to restore premenopausal serum E2 levels, our declared clinical policy is not to repeat implants even in the presence of symptoms if serum E2 levels are > 400 pmol/l.
In other words, if a woman experiences menopausal symptoms but has levels above 400 pmol/L, additional implant insertion is denied. Why? Because they say supraphysiological levels may result. I question this for the following three reasons:
1) According to https://en.wiktionary.org/wiki/supraphysiological, supraphysiological means
"Of or pertaining to amounts greater than normally found in the body." I seriously doubt that levels above 275,000 pmol/L, found in the bodies of ciswomen during pregnancy, can be achieved with subsequent insertion of pellets upon return of symptoms. They don't truly understand the meaning of supraphysiological.
2) What is so wrong with achieving higher levels? Studies in men with prostate cancer (with levels up to 2,500 pmol/L), studies in transsexual women probably experiencing much higher levels with high dose injectables and observations in pregnant women with extremely high levels have shown that despite these levels, the risk of cardiovascular and embolism complications is NEGLIGIBLE. Also, from this study
Br J Obstet Gynaecol. 1990 Oct;97(10):917-21."There is some anxiety about the possible harmful sequelae of supraphysiological estradiol levels but
no data are currently available to show any deleterious effects of these levels on coagulation factors, blood pressure, glucose tolerance or the occurrences of endometrial or breast cancer (Hammond et al. 1974; Thom et id. 1978; Studd B Thom 1981; Armstrong 1988)."
3) Women during a cycle achieve levels as high as 649 pg/ml (2,382 pmol/L). http://www.specialtylabs.com/clients/outreach/web/site/details.asp?tid=44312&cid=301&keyword=
Hence, additional implants are denied upon return of symptoms for no good reason and aren't justified. Some women end up suffering unnecessarily. :( Some women may need more to feel good as the above study suggests...
"Complete withdrawal of oestrogen therapy as suggested by Gangar et al. (1989), to allow levels to return to 200 pmol/L is wrong and in severely depressed patients may be
dangerous. Supraphysiological oestradiol levels are an uncommon consequence of oestradiol implants occurring most frequently in women with a history of depression or surgical castration. These high serum oestradiol levels were not associated with any deleterious effects and
may be necessary for the control of symptoms in specific women."
Although the threshold mentioned here is lower, this observation nonetheless applies to the policy earlier stated because these women did best with levels much higher than 400 pmol/L, in excess of 1,750 pmol/L. Not all women respond the same, some being less sensitive than others and doctors treating transwomen should learn a thing or two from this study, realizing that one size fits all levels is perhaps not the best way to go about treating us.
QuoteTherapy was with (...) E2 implants inserted subcutaneously in the lower abdominal wall.
Dosages aren't allowed, Laura! Oops!
QuoteThere appears to be no justification for giving E2 implants more frequently as this policy achieves satisfactory (physiological) premenopausal E2 levels and good symptomatic relief without any evidence for accumulation of E2 or 'tachyphylaxis'.
If one delves deeper into the study, one notes that not all women had "good symptomatic relief" as is asserted by authors in the conclusion. In fact, at 50 months implant therapy, 15 % of women complained of hot flushes, 5% of irritability, 3 % of either lassitude/lethargy, 3% of anxiety and 2% of low libido which are symptoms typically associated with too low estrogen and which improved for the most part in women after implant therapy.
Also, upon further review, one notes that 16 women discontinued treatment because they preferred other forms of HRT and 3 saw no benefit, perhaps because some of these women were getting menopausal symptoms well before the level of 400 pmol/L was reached.
Did these women experience desensitization OR instead just needed higher levels to feel good as opposed to some others who do well on lower levels and whose threshold to experiencing symptoms is much lower? Who knows? But, certainly, tachyphylaxis cannot be written off as the authors seem to do. It could well be that some women experienced desensitization and there may be evidence for tachyphylaxis.
The last statement from the original study which I disagree with based on the findings that not all women were symptom free:
"The policy of implanting, purely based on perceived return of symptoms without regard to the plasma oestradiol level, is illogical and may lead to accumulation and supra-physiological oestradiol levels."
This seems very wrong to me for the reasons cited above. These are NOT supraphysiological levels (far from), there appears to be no harmful effects that result from higher levels and not all women respond the same level due to varying sensitivity and this is shown in the fact that not all women showed good symptomatic relief as is implied by the conclusions of this study.
Further investigations are warranted to determine whether desensitization occurs in certain women or whether the return of symptoms may simply mean that some women need higher levels to feel best.
Just to repeat a few important points imo:
Levels of E2 at which Implants are advisable.
Most women feel well with E2 levels between 300 and 600 pmols/litre but there is great individual variation.
Even the experts disagree about the desired upper level at which new implants should be inserted - 350 pmols/litre or 400 pmols/litre are thought appropriate by some. Others feel that 600 pmols/litre is the level below which many women start to get symptoms of oestrogen withdrawal.
Once therapy is established, E2 implants may need to be prescribed only on an annual basis.This is from another study :
The incidence of tachyphylaxis was 1.7% (2 patients).
So its rather rare.
I'd agree that most important should be how people feel. This is included in the passages above.
Quote from: KayXo on April 05, 2016, 02:22:27 PM
Dosages aren't allowed, Laura! Oops!
There was an understanding that with pellets there is no self medication possible.
*hugs*
Here is another study
Aust N Z J Obstet Gynaecol. 1998 Nov;38(4):455-60.
"We undertook an audit of the medical records of 118 women who received 673 oestradiol implants"
"The incidence of tachyphylaxis was 1.7% (2 patients)."
Furthermore, it is stated:
"Tachyphylaxis is a reported problem in some patients receiving implants. The incidence of this condition varies with the definition used. The pharmacological definition is the absence of a response to a pharmacological treatment in the
presence of therapeutic drug concentrations. Unfortunately it is difficult to define a therapeutic drug concentration when considering implant therapy because patients may vary in their oestradiol requirements, particularly those with premenstrual symptoms and depression (9). In addition, serum oestradiol levels may not necessarily reflect tissue oestradiol levels. Other authors have defined tachyphylaxis as the development of supraphysiological oestradiol levels during implant therapy."
"Garnett et a1 (9) in their population of 1,388 women undergoing treatment with (...) implants used an oestradiol level of 1,750 pmol/L (maximum physiological oestradiol level) as the definition of tachyphylaxis. They reported a 3% incidence among their study population. Gangar (7) used the development of an oestradiol level of >1,200 pmol/L
as the definition of tachyphylaxis. Using this criterion 12% of our study population would be defined as tachyphylaxis compared with 1.7% using Garnett's criterion."
"Oestradiol implants, when administered on the basis of return of symptoms without a strict target oestradiol level will result in a steady increase in oestradiol levels. The dosage used and the number of implants received are important influencing factors. Whether this increase in oestradiol levels is harmful remains uncertain. It seems that higher mean oestradiol levels achieved with implant therapy are important for patients with osteoporosis"
The question remains: does desensitization occur in some women or are these women simply needing higher levels? I think that if women continued to get symptoms at progressively higher levels, than this would suggest desensitization whereas if this was not the case, then it was clearly a case of too low E levels for them.
Quote from: Laura_7 on April 05, 2016, 02:49:41 PM
This is from another study :
The incidence of tachyphylaxis was 1.7% (2 patients).
So its rather rare.
As I showed above, the study indicated that the incidence would be higher (12%) were the definition of tachyphylaxis changed to 1,200 pmol/L at which symptoms returned. Had this threshold reduced even more, the incidence would have even been greater. 12 % (or more) is not rare anymore and the earlier study showed
at least 15 % of women (up to potentially 28% of women) experiencing symptoms at 50 months. It's important to not just read the abstract but I also understand not everyone may have access to the full study.
Quote from: KayXo on April 05, 2016, 03:03:35 PM
As I showed above, the study indicated that the incidence would be higher (12%) were the definition of tachyphylaxis changed to 1,200 pmol/L at which symptoms returned. Had this threshold reduced even more, the incidence would have even been greater. 12 % (or more) is not rare anymore and the earlier study showed at least 15 % of women (up to potentially 28% of women) experiencing symptoms at 50 months. It's important to not just read the abstract but I also understand not everyone may have access to the full study.
Well as cited above:
levels of reimplantation at 600pmol seem safe for endos ...
and there is an accumulative effects since older pellets still make for certain levels ... so this can be accounted for by longer implantation intervalls ...
*hugs*
Very interesting discussion KayXo and Laura_7. Thanks for posting.
Paige :)