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Survivor's Guide to Surgical Menopause
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Women in surgical menopause share strategies for maximizing wellness
Women in surgical menopause share strategies for maximizing wellness

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Stopping Hormone Therapy Linked to Cardiovascular Death
<http://www.medscape.com/viewarticle/852126> (free signup required)
<http://press.endocrine.org/doi/pdf/10.1210/jc.2015-1864> (full article)

Okay, this is big. This is the biggest news in hrt/menopause since the WHI cancellation. And, as the news article notes, it's gonna be controversial and an uphill battle, but so far the results look really really inescapable. Short form:

"In the first year after a postmenopausal women discontinues hormone therapy, her risk for cardiovascular mortality is higher than if she had continued the therapy."

Or to put it in more quantitative terms:

"In the first post-treatment year the discontinuation of HT use was accompanied with 26%– 66% elevations in the risk for cardiac or stroke death. This risk elevation was markedly higher in women who were younger than 60 years at the initiation or discontinuation of HT use."

So much for quitting hrt to a timeline. We already have data that the post-WHI hrt-cutting cost the economy billions of dollars in lost productivity by women, that being more important (sigh) to many than the level of misery experienced by those women, which was astronomical. Now we have data that arbitrary discontinuation of hrt to a schedule, absent other health considerations, is not just miserable but fatal. Oops.

'In women 50 to 60 years of age, "we clearly see" that this "is doing more harm than benefit," he reported. "If women are otherwise healthy, they could continue hormone therapy as long as they wish."'

Now this immediately raises two questions with respect to surgical menopause. First is of course the woman who is left post-op without hrt support, effectively the same thing as taking then stopping hrt. This makes "let's wait and see if you need it," a witless approach with surgical meno, not just cruel but potentially fatal. Let's take a moment and think about that. Yeah, not easy to come up with a lot of gratitude for that, is it?

We do have to raise the question: what about women with cancer risks or who have had cancer? And here it's obvious, I think, that we need to individualize a great deal more than has been done with the current default policy: cancer of any kind = no hrt. That's going to be a challenge for women and their oncologists, and I don't expect that issue to be resolved in any useful way very soon. But that doesn't mean that women shouldn't ask and shouldn't press for a very clear evaluation of their relative risks beyond the kneejerk one that prevails right now.

The other issue is at the other end of the timeline. Does this mean that we need to continue hrt forever? I don't think that's what this is saying. I suspect that the underlying action here will be seen not to be some magical property with which hrt is imbued but rather one of meeting current hormone needs. We've well established that our needs do decline with age, such that lower and lower doses of hrt make up coverage for that level of need. So there's no reason at this point to doubt that we can and should continue to step down, meeting our needs at their current level, until we are covering them on our own without an increment of supplementation. I see nothing to indicate that easing off of hrt in this fashion would present the same problems as discontinuing hrt when it was still needed, although that may change as this continues to be researched.

I've linked to the full journal article, which can be downloaded in pdf format, and it'll also be in our bookmarks account. It has some good examinations of the good and less-good aspects of the study, which will come into play in the quibbling over it that has undoubtedly already begun. This is going to complicate the practice of prescribing hrt for doctors, but in a way that brings it in a direction that women have always espoused: normalizing health rather than treating menopause like a disease. And that's good news for us. 

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While we don't support thyroid issues, they can be a concern for many menopausal women. One of the things hypothyroid women can struggle with is failure of T4 supplementation to provide fully for their needs. This research explores why that may be so and gives women new information to take to their doctors in support of their requests the routine use of T4 does not meet their expectations.

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Every now and again an interesting bit of research comes along that is a lightbulb moment for something that's previously produced mixed results. And if anything is a poster child for mixed results, it's soy. Over many years and many research studies, the best that researchers have been able to come up with is: sometimes it works and sometimes it doesn't. 

But thanks to a supplement study, we may have at least one of the answers about why soy has presented that inconsistent picture, and it has nothing to do with soy and everything to do with the women using it.

Some women who consume soy experience fewer hot flashes <http://www.medicalnewstoday.com/releases/285686.php> explains in a study of 357 women with hot flashes that:

"Urine tests showed which women produced equol, which is metabolized from the soy isoflavone diazden by bacteria in the gut.

"Of the 357 participants, 34% were equol producers. And among the equol producers, those who had the most soy in their diet were 76% less likely to report a higher than average number of hot flashes and night sweats than those who had the least soy in their diet. But for the women who did not produce equol, soy made no difference."

It's still important to note, however, that "Soy intake didn't affect how severe or bothersome the hot flashes and night sweats were for either group."

So we've got several things we can work with here. First, soy's either going to work or not work for us in reducing the number of hot flashes we experience. It's also not going to reduce the severity of the ones we nonetheless do have. Still, that's more than some women who don't want to use hrt or who are in natural perimenopause may otherwise have to work with. 

But we have to remember that there's still no such thing as a free lunch. Soy estrogens are close enough to our own estrogens that they can activate other estrogenic effects as well, which may make them as unsafe for women with fibroids or those undergoing cancer treatment with estrogen deprivation as estrogen itself. So we still need to remember that "safe" doesn't always come into it, even when something's a fairly innocuous-seeming food item. 

It's also important to recognize that soy on top of hrt is a bit counterproductive. In occupying estrogen receptors, soy estrogenic compounds may not fully activate receptors in the way estrogen itself would. So it may actually seem to lower the efficacy of our hrt rather than extend it as we might have hoped. In fact, for a woman marginally stable on hrt, a soy binge can actually be a destabilizing influence. 

So how do we determine if we are an equol producer or not? The articles suggests:

"'Women who are interested in trying dietary soy for their hot flashes can do their own experiment by incorporating it as a healthy food in their diet. If it doesn't help in four to six weeks, they can assume it probably won't and can try other lifestyle or medical therapies for their hot flashes,' says NAMS Executive Director Margery Gass, MD, NCMP."

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At this year's annual meeting of the North American Menopause Society, the ongoing battle of medical professionals (with the backing of pharmaceutical manufacturers and insurance companies) turned up the heat for another round. 

"Many U.S. women use custom-compounded hormones for menopause" <http://www.reuters.com/article/2014/10/16/us-compounded-hormone-therapy-idUSKCN0I52UT20141016> (free signup required) discusses a pair of surveys the data from which was interpreted to suggest that 3.6 million women use compounded hrts, representing an estimated more than $1 billion in revenue lost by pharmaceutical companies.

While acknowledging that women might need a custom-compounded hrt if she were sensitive to a retail drugs ingredients, the survey presenter goes on:

"If you think back to the deaths with the fungal meningitis cases, we learned a lot about the unique risks with custom-compounding, that they aren't FDA-approved, monitored or regulated, that there is concern about under dosing or over dosing and there haven't been any large clinical trials to test safety and effectiveness of these products."

And not all of that is true or particularly makes sense. What is? Let's take a closer look and these "unique" risks.

"they aren't FDA-approved, monitored or regulated": This is a distortion. The active ingredients, the hormones themselves, are indeed subject to federal standards. Your pharmacist is not driving down to the drug-dealer district and buying little plastic baggies from the pockets of a skeevy character standing on a street corner. The final product, the hormone plus the vehicle, is not regulated because it's a non-stock preparation—which is the whole point of compounding. This accusation undermines the authenticity of the ingredients by conflating them with the whole preparation, which is fundamentally an apples/oranges argument.

"there is concern about under dosing or over dosing": Of course there is. But this is in no way different to retail hrts aside from the fact that there is a "recommended dose" as part of the FDA product data sheet that represents the sole dose(s) that has been through the approval process. That doesn't mean that other doses can't or won't work, but rather is a literal statement that they just haven't been licensed. But as we well know with hrts, that's just not important. Many of us need more or less than the stock retail doses. Additionally, there's nothing to keep anyone, doctor or user, from taking more dose iterations of retail hrts or from splitting the official dose into a lower one. So that's a legalistic quibble but not one that has particular weight in practical terms. 

"there haven't been any large clinical trials to test safety and effectiveness of these products": And that's a business concern, really. No, compounded hrts have not in each and every variation gone through the huge and expensive FDA approval process. And it's to the commercial interest of pharmaceutical companies to assert that given as how they've had to make this investment, any product that hasn't done so is illegitimate. It also is part of the pharmaceutical marketing mystique that each drug is unique and can never be pitched head-to-head based upon common ingredients and actions. But many hrts in fact grandfather into the FDA approval process on existing product testing with a nominal clinical trial and data set that involves well under a hundred and sometimes only a score of participants, so it's not actually as universal a standard as the accusation makes it sound. Doctors, in fact, resolutely insist that the actions of some hrts can be taken to represent the actions of their ingredients (Premarin, in research trials, is often used to represent all actions of all estrogens, the fallacies of which approach were only beginning to be explored in the WHI study results). So in the end, this argument is really more about that $1 billion of "lost" business revenue than any true statement about the safety or effectiveness of a compounded hrt competitor.

But there's a further implication to this as well that exposes the flaw in this whole premise. If it's a legit use where a woman is sensitive to ingredients, as the researcher allows, then why don't those same concerns about "not tested" also rule out compounded hrts despite the sensitivity? You can't really have this both ways: if compounds aren't for all women, they shouldn't be for any women. Or do women with "sensitivities" not deserve functional hrts? 

Now, it's true that compounding pharmacists are not as well-supervised as they might be and they certainly are not educated and licensed to prescribe, as many in effect do with the whole BHRT marketing scheme of multi-hormone testing and prescribing. I take as much issue with this as anyone. There should indeed be better controls to be sure that pharmacists are practicing in keeping with their licenses and practicing safely. Absolutely. But that's a legislative/regulatory issue, and putting that between women and menopausal treatment is, again, a misplaced argument. 

It's also true, although never mentioned in this argument, that retail pharmaceutical companies routinely must recall drug batches for errors, sometimes substantial ones. Go to <http://www.fda.gov/Safety/Recalls/ArchiveRecalls/2014/default.htm> and take a look at what's listed and how often. For example: take the 09/11/2014 recall order against Hospira, Inc. for an injectible drug, heparin, that is used to prevent blood clots...and is contaminated by particulate matter...that could potentially cause blood clots. Does that sound serious? It is, very. But that's an FDA-legal drug. And one of many each year that is on the market in a dangerous state. So the implied situation of compounded=dangerous and FDA-approved=safe is as specious an argument as the dose-related one because it looks only at one side of the situation and damns compounds for situations that exist in the retail market as well. 

The researcher states in the article that she presented it at NAMS to '“get the message out” in the hope that more health providers will talk to their patients about the potential risks of using non-FDA-approved compounded products.' And that's a worthy goal, always, to talk about risks. But drumming up scares instead of a balanced discussion of risks on both sides: not so much. 

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I wrote a bit ago about the new ap that the North American Menopause Society (NAMS) is releasing, but a new article in medscape (free signup required) has a few more details <http://www.medscape.com/viewarticle/833147> and a link to the full discussion of it in the journal Menopause at <http://journals.lww.com/menopausejournal/Citation/publishahead/Algorithm_and_mobile_app_for_menopausal_symptom.98295.aspx> (click on the link to the right for "article as PDF" to read or download the whole thing). 

The medscape article has a nice summary, in which we learn that there are two tracks, one for patients and one for clinicians. 

The app has several unique features, including calculating a 10-year cardiovascular disease (CVD) risk score for the patient, which can be incorporated into decision-making. It also has links to breast cancer risk scoring and to the fracture risk assessment tool (FRAX) for fracture risk calculation. The app was developed in collaboration with NAMS and includes NAMS educational materials that can be directly emailed to the patient, including NAMS "meno notes" on behavioral and lifestyle modifications to reduce hot flashes; pros and cons of hormonal versus nonhormonal options, and transdermal versus oral hormone therapy; and an information page about options for genitourinary symptoms and their treatments. The app also includes direct links to tables with information about different formulations and doses of the medications, as well as information on contraindications and cautions.

The thing that most encourages me is that, contrary to the original announcement which spoke only of an app for iDevices, "it is expected to be available for other devices and possibly for electronic health record systems in the future." I think that's an important thing for the vast numbers of women who may not have the financial resources to afford these pricey devices and yet who might well benefit from access to this information, especially if their doctors will be applying it to them.

Of course, it all comes down to the quality of the information. And naturally the thing most on my mind was: is there a track for surgical menopause or are we supposed to go on being lumped in, inappropriately, with natural meno? According to the journal article, yes, "The algorithm can also be used for women who have had removal of both ovaries, regardless of age."

And yet they immediately go on to state "The algorithm encourages all patients to try lifestyle modifications for at least 3 months before beginning HT or other pharmacologic therapies." Yeah, that's really not such a great strategy for us and builds on the old premise that women had to earn their hrt by the magnitude of their post-op symptoms instead of being offered the option of a smooth, lower-stress transition with immediate hrt. And that further sets women up to feel that choosing hrt represents a failure on their part, that they're not tough enough to shrug off the effects of low estrogen, when in fact the impacts of oophorectomy can be profound and irresistible. 

The qualifying symptoms for hrt are limited to the indications in FDA licensure for hrt: hot flashes or vaginal atrophy, leaving aside all of the other effects some of us know only too well. This may mean that a women troubled by other symptoms could need to magnify reporting of the impact of her hot flashes in order to even open the dialog about hrt. Even though the FDA also licences hrt for osteoporosis, the NAMS article suggests that only applies to women "unable to tolerate" the medications (bisphosphonates, about which there are many concerns as to safety), thus adding yet more stigma to the hrt decision.

I'm also concerned about their decision algorithm in that the "yes" for hrt track requires a woman be "free" of breast cancer or endometrial cancer. Since many women had their surgeries for these disorders and yet many oncologists now believe those women can successfully and fairly safely use low dose hrts, the notion of "free" is problematic. I'm also not sure how any of us can be affirmed fully "free" of these cancers in that they may exist in undetectable states...room for a doctor who fears hrt to turn a woman down flatly. So while NAMS speaks strongly for how impartial and fact-based this algorithm is, I can see multiple places where a doctor of strong opinion can still subvert the process and use the terminology to support his opinions. 

(image from "Algorithm and mobile app for menopausal symptom management and hormonal/non-hormonal therapy decision making: a clinical decision-support tool from The North American Menopause Society" <http://journals.lww.com/menopausejournal/Citation/publishahead/Algorithm_and_mobile_app_for_menopausal_symptom.98295.aspx>, Fig. 1, p. 2)

In discussion of the no-hrt, drug-supported track, I see lots of listings for drugs but no mention (without delving further into the supporting data) of the fact that many of them cause things like osteoporosis themselves or have serious side effects such as suicidal risk. The fact that medicine willingly engages with these risks, not even necessarily warning patients about them, while fleeing in terror from treatable cancers, terrible as they may be, says something about how perceptions remain skewed by the WHI panic (which, let us remember, showed a reduction in cancers, even breast cancer, with estrogen alone). 

Can I say anything good about this? Yes, they do call for re-evaluation every 6-12 months. That's something we do need to do, since even in surgical meno our hrt dose needs typically decline with age. I would suggest that the 12-month interval is more appropriate in surgical meno since we are less likely to "get over" symptoms than a woman in natural perimenopause, but I suspect the 6 months provides more incentive to a medical practice business model's profits and we may be forced by practitioners using this algorithm to comply on those grounds.

There's some waffle room in duration of use of hrt, but "NAMS generally recommends treating for the duration of time consistent with treatment goals but avoiding durations longer than 7 years for estrogen-alone". That again gives wary doctors grounds to cut us off, even though the algorithm does leave room for patients who have no risks to try to earn more. The algorithm cites another NAMS document, "NAMS Practice Pearl: Extended Duration Use of Menopausal Hormone Therapy" (<http://www.menopause.org/docs/default-source/2013/nams-practice-pearl-extended-ht-duration.pdf>), which covers the issue in greater depth and takes a gentler and more realistic line. So it might be good to have that particular document on hand should one end up facing an abrupt 7-year cancellation of hrt by a doctor unwilling to go beyond the basic algorithm.

I am also pleased that they speak to beginning with lower doses, but their timeline for readjustment of 3-6 months is unreasonable and cruel should a woman be suffering symptoms of inadequate coverage. The time it takes—and this is pure physiology—to adjust to an hrt dose change is accepted by endocrinologists as 6-8 weeks, and of course we know that within a week or two we can sense the direction and coarse adequacy of a dose, even though we can feel some fine tuning go on past that point. I suspect that this is, again, wishful thinking that a woman will "get over" her symptoms and not need hrt any longer...while in fact being totally unlikely and dismissive for us. We may need to advocate strongly for symptom relief sooner than this very long and inappropriate timeline, but doctors will now have justification in this algorithm to dismiss our suffering. 

As much as I am frustrated by the use of the term, I'm pleased to see the inclusion of "FDA-approved bioidentical options" in the hrts choices. Of course, that seems as though it disallows the option of compounding hrts entirely. While I'm personally deeply skeptical of the "bioidentical" marketing scheme of testing and multi-hormone prescribing, I have seen that there are many women who do not find a good option amongst retail hrts and who do find value in compounded versions. I find it disingenuous that medical practitioners decry mistakes made by pharmacists while ignoring the large number of retail drug recalls by pharmaceutical companies, and I feel that their snubbing of compounding has more to do with the medical industry economy than patient welfare. 

I don't know what hrts they acknowledge within the app, but the article references the NAMS document "Approved Prescription Products for Menopausal Symptoms in the United States and Canada" (<http://www.menopause.org/docs/default-source/2014/nams- ht-tables.pdf>). There are several hrts on that list that I'm not sure are available any longer, based upon what women trying to find them have been told by pharmacists trying to fill scripts for them, but it does cover the major retail options. Things like transbuccal use of Estrace generics or other off-label approaches women have cobbled up to get better or more affordable hrt coverage remain beyond the pale.

Overall, then, I am guardedly cautious about this ap. It's clearly more focused on natural menopause, a reasonable tactic given what a relatively small portion of the menopausal population we represent. But because of that aspect, our different level of need is given short shrift and we risk being subject to considerable inappropriate and insensitive handling accordingly. 

Of course, this is only an app, only being touted by one medical society and a notably conservative one at that. The problem is that it could prove very attractive if, as is intended, doctors stop worrying about trying to individualize treatment or keep up with current practice literature and research to take a more time-effective approach and simply follow this to the letter without thought or discussion. While these are at all their bases worthy considerations, reduction to a binary process of quick taps on a screen does not provide the greater depth and complexity that many of us in surgical meno require in our decision process. While I understand entirely how this is beneficial to the medical industry, I think it represents a disservice to the women who deserve more than a simplistic choice between 100% safe and the risks of drugs or lack of normative systemic function. 

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New Menopause App to Launch at NAMS Conference (<http://www.medscape.com/viewarticle/832925> free signup required to read)

The North American Menopause Society is releasing a free ap that is a flow chart to guide doctors and women through all of the decisions they need to make about menopausal treatment. 

"It is a decision-support algorithm designed to help clinicians understand treatment options, decide which patients are candidates for the pharmacologic treatment of menopausal symptoms, and guide shared decision-making between the clinician and the patient. It also guides patients through the same process."

Oh, but you only get to use it if you have an iPhone or iPad. The rest of us are out of luck. But if you have a supported device, you can download the ap free from the App Store starting October 15. There's no mention made as to whether or not there's any sort of geoblocking on this, so I can't say whether or not it's available to non-US or non-North American users. 

The ap purportedly contains no advertising and was developed independently of the pharmaceutical industry.

"'Many clinicians have shied away from prescribing hormone therapy because it's difficult for them to identify appropriate candidates and they're worried they might be prescribing for the wrong patients, who may be at increased risk. This makes it very straightforward, in an algorithm flow-chart sort of way,' Dr. Manson explained."

Which of course is worriesome because as soon as you try to fit all women into a single treatment path, any woman for whom that fails to work out is thus to be blamed for her failure, rather than offered additional help. We have no idea whether this will include any particular track for women in surgical menopause or include disease treatment (such as endo), and we're a little worried that the options will be limited because of the prevailing opinion that all hrts are interchangeable and equally functional for all women, thus depriving us of things like vaginal progestogens to limit systemic impact or transbuccal hrt use. 

Since we don't have any iDevices, it would be swell it if someone would download the ap and, if possible record all of the decision paths and options in either screencaps or text, so we can examine what it actually contains and determine whether any specific strategies need to be developed by us in surgical meno to help doctors use it in our particular situations. 

Our old discussion forum has gone offline but that doesn't mean we've stopped talking. Please join us in our new SGSM Google Group at <https://groups.google.com/forum/?hl=en#!forum/sgsm> where we continue to explore using hrts and other menopausal health options as well as looking at the latest news in the field. 

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A newly-released study (discussion at <http://www.medscape.com/viewarticle/819753> but free signup required for that one) finds a risk for pancreatitis associated with hrt use, especially that greater than 10 years. Unfortunately, the study did not in any way use information about route or type of hrt, which we know makes quite a difference on liver and other internal organ processing. For a discussion of what this means to women using hrt, please join us on the forums at <http://sgsm.phpbb3now.com/index.php>

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It's a quiet time on the forums right now, mostly because everyone's taking a deep breath at the start of the winter holiday season. 

Even if you're fairly well balanced on your hrt, holidays can derail balance in a number of ways. Travel and changing time zones, stresses (even happy ones but we all know that holidays aren't 100%), different food, drinking alcohol, and even changed water supplies: all of these things can affect hormone balance and make us wonder why our hrt seems not to be working as well as it used to. 

If your hot flashes are picking up in number or intensity, especially around 4-5 am, or you are feeling more emotionally fragile and teary or impatient than usual, these could be signs that your holidays are slightly disrupting your balance. 

What do we do? Usually altering our dose or timing of our hrt is not a good answer: that just adds more disruption and if there's anything our bodies—and especially brains—detest, it's disruption. 

What works best, and it's terribly trite sounding for all that it's effective, is taking time to re-center ourselves. One of the best ways to give our brain chemistry a boost is exercise out of doors. This may seem like it's just adding another demand on our time, but it's actually an investment in our own continued functionality. Remember: now that we don't have ovaries, we need to take over some of our previously "automatic" functions on "manual" and getting ourselves through the holidays without disruption is one of those new tasks we have to consciously take on. 

Your holiday may be fully booked and your time at a premium, but we can keep ourselves functioning at our best by investing a bit of that time in going for a walk. Whether it's a stroll around the block with the little ones or a snowshoe hike alone in the woods, just a few moments of fresh air and exercise can readjust our brain chemistry as potently as a dose of the standard antidepressants and help stave off that holiday hormone meltdown. 

Here's hoping that your holidays are festive and joyous. And if you want to talk more about hormones, hrts, and how surgical menopause is impacting your life, please join us on the forums.
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