Hot Flashes vs. Hell Flashes

Here’s my story and I’m sticking to it.  Really I am.

Once upon a time I had hot flashes intermittently throughout my late 30s to late 40s.  It took THREE attempts to get off the combination hormone Estrogen/Progesterone, but I did!  After the third and final attempt, I was hot flash free after just over six weeks.  This final time I stopped hormones my mindset was different.  I embraced the burning ember feeling in my face, the formation of beads of sweat with the burning up sensation at night with cold shivers to follow.  I felt the heat rise and fall, reassuring myself this was a normal process when adjusting to being not so hormone-augmented any longer, hoping this feeling was transient.  The bothersome perimenopausal symptoms slowly faded, with the hot flashes and facial flushing being the last to go.

After this reprieve I decided to have my thyroid tested.  My TSH level (thyroid stimulating hormone) was barely elevated above the normal range of high — I was (still am?) sub-clinically hypothyroid.  I had some hypothyroid symptoms so my general partitioner put me on a low dose of Levothyroxine — 25 mcG to be exact.

For better or for worse, hypothyroidism is largely not under our control, [my emphasis] says Dr. Daniel Einhorn, M.D., an endocrinologist at Scripps Memorial Hospital La Jolla., who notes the disease is primarily genetic. Family history may be the greatest indicator of troubles ahead, but since so many people are undiagnosed, you could have a family history of thyroid disease and have no clue about it.

Full article

After four weeks of Levothyroxine I felt like I had more energy.  Then just about six weeks into this medication regime I started to have WEIRD hot flashes — more like HELL flashes — periods where it felt like ice was dripping down my neck covering my back and upper arms while simultaneously feeling an inner burn. Nighttime became its own hell.  I couldn’t sleep through the night because I was sweated profusely. I was hot and freezing at the same time.  How was this possible?  I thought maybe these symptoms were from drinking coffee in the daytime and wine at night.  Ha ha ha!  Cute  me and my hypotheses!  These symptoms were different than those related to coming off the hormones.

I thought these problems instead could be from the Levothyroxine. 

If your thyroid is out of control, all of your efforts to curb perimenopausal and menopausal symptoms, like hot flashes, insomnia, weight gain, hair loss, and achieve hormone happiness will be for naught [my emphasis]. What’s more, your symptoms might not be perimenopausal or menopausal at all. So talk to your perimenopause and menopause specialist about your symptoms and when you’re experiencing them. It’s a great first step in determining if your so-called menopausal symptoms are really symptoms of an underactive thyroid.

Ellen Dolgen

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From The Awkward Yeti comic — Check it out!

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I broke the scored thyroid tablet in half and tried taking a lower dose daily for four weeks … the chest pain and palpitations stopped with this decreased dose.  Oh, did I forget to mention I was having those too — the chest symptoms?  Oh, and the hyperacusis  … read below:

Individuals with hyperacusis have difficulty tolerating sounds which do not seem loud to others, such as the noise from running faucet water, riding in a car, walking on leaves, dishwasher, fan on the refrigerator, shuffling papers [husband’s voice, his breathing or even his heart beating … possibly the sound of any new hair growth on his beard as well]. Although all sounds may be perceived as too loud, high frequency sounds may be particularly troublesome [good thing I am not married to a canary!].

By this time I’d had enough experimenting on my body and said “F-you Levothyroxine!” and stopped it.

I am sub-clinically hypothyroid and many people aren’t even medicated at the TSH level I had!  (I don’t recommend anyone stop their medication without consulting a real life professional … just so you know!)

Subclinical hypothyroidism, also referred to as mild thyroid failure, is diagnosed when peripheral thyroid hormone levels are within the normal range, but thyroid stimulating hormone (TSH) is mildly elevated. It is common, occurring in 3-8% of the population, and carries a risk of progression to overt hypothyroidism of 2-5% per year. There is no absolute consensus on which patients to treat, although there are some clear recommendations.

It took another four weeks until the weird hellish symptoms went away. In the meantime I kept drinking coffee in the daytime and wine at night — you know, a healthy balance!  I’m no longer having hot flashes or night sweats.  Hallelujah!  I feel fine and am off any routine medication.  So happy.  Hormones are just plain weird and their effects REALLY linger.

I have concluded that hot flashes from Levothyroxine’s thyroid-hormone effects are much, much, much worse than any hormonal perimenopausal symptoms — a very interesting comparison and an experience I don’t wish to re-experience.  On an interesting note, the Levothyroxine lowered my cholesterol though!

How Does the Thyroid Cause Cholesterol Problems?

Your body needs thyroid hormones to make cholesterol and to get rid of the cholesterol it doesn’t need. When thyroid hormone levels are low (hypothyroidism), your body doesn’t break down and remove LDL cholesterol as efficiently as usual. LDL cholesterol can then build up in your blood.

Thyroid hormone levels don’t have to be very high to increase cholesterol. Even people with mildly low thyroid levels, called subclinical hypothyroidism, [that’s me!] can have higher than normal LDL cholesterol. A study in The Journal of Clinical Endocrinology and Metabolism (JCEM) found that high TSH levels alone can directly raise cholesterol levels, even if thyroid hormone levels aren’t high.

Full article

Why The Connection?

When thyroid hormone levels drop, the liver no longer functions properly and produces excess cholesterol, fatty acids and triglycerides. The liver, which metabolizes cholesterol, also has a key role in thyroid hormone metabolism. In addition, thyroid hormone serum level is very important for normal liver function. The liver in turn metabolizes the thyroid hormones and regulates their effects in the body. What’s more, thyroid dysfunctions are frequently associated with abnormal liver tests.

Another explanation for the thyroid-cholesterol connection is that hypothyroidism slows the body’s ability to process cholesterol. This processing lag occurs thanks to reduction in the number and activity of receptors for the bad LDL cholesterol. These receptors normally help metabolize LDL cholesterol. When the number of receptors decreases, LDL builds up in the bloodstream, increasing both LDL and total cholesterol levels.

Hypothyroidism also significantly changes the metabolism of steroids and other hormones that are made from cholesterol. For example, the hormone progesterone is made from pregnenolone, which in turn is derived from cholesterol. Likewise, vitamin D is produced through the action of ultraviolet irradiation on cholesterol in the skin. Hypothyroidism reduces the conversion of cholesterol into progesterone and vitamin D, contributing to total cholesterol load.

Full article

Let’s just say that stuff quoted above EXPLAINS A LOT!

I had vitamin D deficiency.  I am now in the normal range (at least my Vitamin D is) after taking 10,000 units of vitamin D3 daily for three months.  I am eating oatmeal intermittently to help improve my cholesterol.  I simply can’t tolerate the thyroid medication.  I feel OK … but my ankles still have a slightly swollen butterfly appearance on the outer aspects.

Hormones are simply weird and mysterious.  Cats are also mysterious and often weird as well.

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Hormone Confusion

I’m still reading The Estrogen Errors: Why Progesterone Is Better for Women’s Health.  It is not quite the book I expected. I was hoping for more information about progesterone, but am getting a rather lengthy history about estrogen studies.

So far I’ve learned that estrogen isn’t really good for the heart, especially for any woman who starts estrogen therapy after menopause.  Apparently numerous studies set out to detail and prove why estrogen was good for a woman’s heart only to find either no evidence to support this idea or that it was actually harmful.

Big Pharma is to blame, according to author Dr. Jerilynn Prior, is to blame for most of these erroneous studies and the push for estrogen to be the forerunner hormone.  Interestingly, Dr. Prior discusses the errors with the quasi-estrogen DES – Diethystilbestrol as being an estrogen that could save failing pregnancies, when in actuality it caused more miscarriages that it helped, gave the women taking DES and their daughters vaginal carcinoma.

In 1971, DES was shown to cause clear cell carcinoma, a rare vaginal tumor in girls and women who had been exposed to this drug in utero. The United States Food and Drug Administration subsequently withdrew DES from use in pregnant women. Follow-up studies have indicated that DES also has the potential to cause a variety of significant adverse medical complications during the lifetimes of those exposed.[1]

The United States National Cancer Institute recommends[2] women born to mothers who took DES undergo special medical exams on a regular basis to screen for complications as a result of the drug. Individuals who were exposed to DES during their mothers’ pregnancies are commonly referred to as “DES daughters” and “DES sons”.

Source Wikipedia

Not only is estrogen, pharmacological estrogen, bad for the heart, but it plays no part in helping bone preservation or density either.

Personally, I’m not taking Lo LoEstrin, my HRT (hormone replacement therapy) with estrogen, for heart or bone health.  Those thoughts hadn’t even occurred to me, nor did my GYN tout estrogen as being helpful for either the cardiac or skeletal system when he prescribed it.  I am taking this HRT for hot flashes, night sweats and insomnia AKA vasomotor symptoms.

The next section in the book I’ll be reading is about breast cancer risks from pharmacological estrogens.

Past research has highlighted potential risks of HRT. The principal results from the Women’s Health Initiative Randomized Controlled Trial was that hazard rate of invasive breast cancer exceeded the stopping boundary for this adverse effect and the global index statistic supported risks exceeding benefits.[

Source Wikipedia

One of things that bother me about the book so far is how much the history of estrogen is talked about without addressing the current use of progesterone.  The authors also mention hysterectomy several times throughout the book but fail to clarify if this is a hysterectomy with or without cervical removal, or a hysterectomy with or without ovaries removed.  To me there is a huge difference among these operations.  A hysterectomy without a salpingo-oophorectomy isn’t the same as a total hysterectomy (cervix removed with tubes and ovaries kept intact).

Anyway, I’ll keep trudging though this book, learning what I can, applying any knowledge to my own real life.  So far, I’m leaning towards asking my GYN for topical estrogen (again), and requesting to take progesterone (the non-synthetic form) 100-300 mG nightly.  I hope I don’t have to make an extra appointment for this request but can to speak to one of his nurses who will relay the information to him.  I’m also trepidous about changing from Lo LoEstrin to the two aforementioned hormones because currently, my vasomotor symptoms are well-controlled.

Dr. Jerilynn Prior states that in the beginning of menopause — perimenopause — estrogen is actually not low, but elevated and/or fluctuating greatly.  She states there is widespread misconception that the perimenopausal symptoms are due to decreasing estrogen.

PERIMENOPAUSE:
The period of time before and for a year after the final menstrual period during which ovarian hormonal patterns, experiences and sociocultural roles change.  The average age at which irregular cycles develop is approximately age 47.  Perimenopause probably begins several years before that in women with regular cycles whose ovaries are making higher amounts of estrogen and tending to make lower amounts of progesterone.  Like menopause, this is a normal part of a woman’s life cycle.

Dr. Prior also goes on to explain the difference between symptoms and estrogen levels in perimenopause and menopause:

ESTROGEN’S LOW IN MENOPAUSE, AND HIGH IN PERIMENOPAUSE — WHY FLUSHES IN BOTH?

Hot flushes occur in both perimenopause and menopause, yet hormone levels are very different. Why? Hot flushes appear to be caused by dropping estrogen levels when the brain has been exposed to, and gotten “used to” higher estrogen levels. Therefore the hot flushes in perimenopause occur because of the big swings in estrogen from super- high to merely high, or even from high to normal. In menopause, hot flushes occur because estrogen levels have become low after the normal levels of the menstruating years and the higher levels of perimenopause.

Although previously hot flushes were thought to be caused by low estrogen levels, in their brain actions, hormonal associations and experiences, they closely resemble an addict’s drug withdrawal. CeMCOR attributes hot flushes to “estrogen withdrawal.” The key trigger appears to be a dropping estrogen level (from high to normal or normal to low). 

Regarding OHT (Ovarian Hormone Therapy), Dr. Prior has never advocated the wide use of hormones as an ongoing “replacement” for menopause. She does not think menopause is a medical condition that should be “fixed”, but is instead a normal stage of life.

According to Dr. Prior, there are only three main reasons to recommend OHT:  If a woman is experiencing early menopause (<45 with hot flushes and for sure < 40) hot flushes are interfering with sleep and for prevention of osteoporosis.  For hot flushes progesterone is equally effective as estrogen [my emphasis].

Dr. Prior also says that OHT should only be taken longer than five years if menopause came early. She has never advocated OHT for prevention of heart disease.

More at CeMCOR

While writing this post, and looking over Wikipedia information I’ve come across this piece of startling information:

A study [2006] where women [aged women] going through menopause using HRT with Progestin as a major component of the therapy showed a few negative effects on hearing, [my emphasis] which highlights the importance of choosing bioidentical progesterone instead of synthetic progestin. Not only does the Progestin decrease the functionality of many regions of the ear it also reduces the effectiveness in parts of the central nervous system used for hearing.

Yes, you heard that right!  Synthetic progesterone, progestin, has been show to affect hearing in at least one study!  Ay carumba!

I actually had to go to the website with research by Dr. Prior to find the information I’ve been looking for — so far, I haven’t found it in her book.  I could have saved some money and time by simply reading the CeMCOR site.

Here’s what I’ve been looking for:

The reasons I believe that progesterone is preferable to estrogen for menopausal women with hot flushes are detailed below.

Progesterone is probably similarly effective as estrogen for hot flushes.  The first reason I prefer progesterone to estrogen for hot flush therapy is that it has been shown to be effective for hot flushes [my emphasis].

However, progestins (synthetic hormones derived from progesterone) have repeatedly been shown to significantly improve hot flushes in randomized double blind placebo-controlled trials and with similar 85-95 percent improvements as estrogen.

Progesterone has a “side effect” that it significantly improves deep sleep  thus particularly helping night sweats and one of the major reasons VMS interfere with women’s well being. (Progesterone cream and progestins don’t help sleep).

Stopping estrogen therapy causes a rebound increase in the number and severity of hot flushes and night sweats to greater than they were initially. There is no evidence from clinical experience (although the definitive study has not yet been done) that stopping progesterone or progestin leads to a similar rebound increase in VMS.

Estrogen or estrogen with low dose medroxyprogesterone increases the number of abnormal mammograms and need for further investigation. It is likely, although not proven, that progesterone alone would not do that.

Estrogen or estrogen/progestin increases the risk for many diseases such as blood clots and strokes, gall bladder disease, incontinence and dementia as well as the more publicized increased risk for heart attacks and breast cancer. By contrast, these adverse effects are not seen with progesterone or most progestins. In particular, progestins “caused only minor effects on coagulation and fibrinolysis” (Kuhl, Maturitas, 1996) meaning no risks for blood clots that estrogens, especially in a pill form, increase.

From CeMCOR

But … I don’t know about changing what I’m doing just because Dr. Prior touts the positives of progesterone.  I wonder what taking actual progesterone is like?  All hormones have side effects, whether synthetic or not.

THIS BLOGGER talks about her negative experience with progesterone.  Granted, she was taking an injection form to get pregnant … which is a whole other different colored bag of worms on why I’d consider taking it.  The bloated feeling, insomnia and constipation sound dreadful!  It reminds of the time when I was briefly pregnant and I attribute all those side effects to progesterone.

Have YOU fallen asleep yet?

THIS IS SO CONFUSING!!!!

Got my book!

I received The Estrogen Errors: Why Progesterone is Better for Women’s Health (2009) two days ago.  I’m still reading the introduction and overview section.

In this revealing work, a medical writer and an internationally-known physician team up to explain the controversy over medicine prescribing estrogen for perimenopausal women in North America, and to detail why progesterone is actually a far more effective, and a far less risk-ridden, approach. Citing long-standing and emerging research, patient vignettes, and personal experience, endocrinologist Jerilynn Prior and writer Susan Baxter tell us how false beliefs on estrogen became entrenched in North American medicine and culture, and why business and politics have played a role in this erroneous thinking.

Like most women in Europe, Prior’s patients find progesterone the key to dealing with a life cycle transition that, contrary to Western medicine, these authors do not see as a disease. Challenging medical orthodoxy, this work presents arguments and evidence both women and doctors will find compelling and useful.

In my internet searching, it’s been difficult to find information about progesterone. Estrogen seems to be ubiquitous, but progesterone seems to be largely ignored.  This has baffled me.  Apparently, one of the authors of the aforementioned book felt the same way.

All of these women were going through something similar, and none of them knew what to do, particularly because being told that low estrogen was the problem simply felt wrong.  Women know what high estrogen feels like — with birth control pills, for instance.  It’s sore breast and headaches, anxiety and bloating.  It made intuitive and physiologic sense to all of us that during perimenopause estrogen was high and we needed progesterone.  Various women asked me what to tell their doctors because most of them had gone to medical school at a time when it was all about estrogen, and it became patently clear that women needed a book on perimenopause and progesterone.  It took me a few years, but here it is.  ~ Susan Baxter, Ph.D.

This reminds me of when I went to see my gynecologist and there was a sub due to his illness.  The sub GYN wanted me to go off my Lo LoEstrin and only use either a low-dose topical hormone or nothing!  I was only 45, still had my ovaries and having the slew of perimenopausal symptoms.  There was no way I was going back to simply topical estrogen.  It has always seemed odd to me when women are taking only estrogen.

You can read more about that situation here: THE SUB GYN THAT ALMOST GOT RID OF MY PROGESTERONE!

I was hoping that my current gynecologist who has returned to practice would be able to provide more in depth answers to my questions about perimenopause and medication management.  I don’t feel like badgering him because, well, frankly, he is frail and has returned to his practice recently after dealing with serious recurrent head and neck cancer.  By no means do I doubt his intelligence, but in the same token I know he’s a man who will never personally go through menopause and his academic training occurred during a time period when estrogen was hot, hot, hot!

What do midlife women expect from their gynecologists?  Too much.  The average midlife woman believes that her gynecologist is familiar with the whole gamut of complaints associated with natural menopause and that he or she could (if only they would) explain exactly what is going on in that woman’s body right now, as well as what she might expect in the future.  Since it is impossible to predict the course of a natural menopause, this would call for unusual prescience on the part of her physician.  And it is no big secret that the training of gynecologists allots very little time to natural menopause.  ~ Janine O. Cobb

As the above excerpt suggests, I too expect too much.

Jerilynn Prior goes on to say:

Gynecologists, however, are trained in surgery, not hormone physiology, and too many of them respond to symptoms with a prescription for ‘HRT’ or a recommendation to have a hysterectomy — since, from the perspective of obstetrics and gynecology, the womb is no longer useful — as ridiculous as that might seem.

After starting this book I’m beginning to think I need a higher dose of progesterone, not the synthetic form and no more estrogen.  These are my early thoughts as I read this book.  We’ll see what conclusion I come to by they end.  Currently, my hot flashes are fairly well-controlled now that I’m back on the Lo LoEstrin regularly.  Some say, why fix it if it’s not broken?

Stay posted.

The TWO WEEK follow-up appointment

Today was my first follow-up appointment … it was supposed to be about a week ago but my doc had an emergent c-section to attend to.

Overall the appointment went well and all my questions were answered.  I am surprised that he didn’t examine me physically; he said he will do that at my six week follow-up.  I was hoping he’d look down there simply for reassurance that everything was healing well.

I told him about my TWO pain concerns:

1. pain in the upper left side under my ribcage under the suture area and
2. low back pain.

The upper left side pain is intermittent and worse with prolonged sitting — any sitting over an hour!  He explained that the upper left side pain is due to a large internal suture he placed to reconnect a ligament and that this pain should definitely lessen.  He assured me that this pain was quite normal in the healing process for the da Vinci hyst.  He also explained that low back pain is common in hysterectomies of all kinds and this too should resolve in time.  I let him know that I took only OTCs during the day but in the evening due to the back pain I am still taking one to two hydrocodone 5-325 mG tablets once daily; he assured me this is fine and quite normal as well.  I read in the HysterSister booklet (see booklet link below) that the majority of women should not be taking opiates and / or narcotic pain medication after six weeks for their hysterectomy … I’m sure this is provided that the women is healing well and is not suffering complications.

Hystersister *FREE* Booklet:

http://www.hystersisters.com/vb2/bookletorder.php

My next question for him was about the Single Site Platform Laparoscopic da Vinci Hysterectomy.  This single site surgery makes only one incision in the umbilicus.  I asked my doctor (even though I’d already had surgery) why wasn’t this method / option available at the time of my surgery.  I was feeling like I missed out on having only one incision — not that I’m some abdomen model.  Obviously you can see from the previous photos I’ve posted I’m not any abdomen model.  I’m not vain … it simply would have been nice to have a single incision in regard to healing.   My doc explained that the maneuverability of the single site platform da Vinci with the existing instrumentation simply isn’t there yet … the technology is not quite perfected.  He said he’s going to an upcoming seminar on the single site soon.  He did mention there is one surgeon who has performed over 1000 of these surgeries to date … I don’t know if this is the surgeon (see below) he was talking about, but here’s the link: http://www.farnammd.com/blog/dr-farnam-leads-the-nation-with-single-incision-robotic-surgery

And … my doc didn’t seem to mind me asking him about this other surgery at all!  I think he actually appreciated that I’m an informed patient.  My doc is so great — he always has up-to-date information, not to mention he is both sincerely kind and caring.

I also asked about those stitches that might pass through my vagina.  My doc said it was unlikely as they were quite internal and would dissolve on their own.  I also informed him that I was spotting only requiring pantyliners.

As far as hormone replacement I thought he’d be starting me on some sort of topical patch.  I need to take hormones despite still having my ovaries … I started menopausal symptoms (hot flashes, night sweats, insomnia and brain fog) last year … summer of 2013 to be exact at age 44.  To my surprise my doc has given me ESTROGel 0.06% to be applied topically once daily.  I don’t like the idea of doing this every day.  He explained to me the patches can cause rashes and localized irritation.  I trust my doc and will give the ESTROGel a try.

Here’s the site on ESTROGel: http://www.estrogel.com/what-is-estrogel

A concern I just thought of was in regard to flying with the gel as a carry-on.  I get really paranoid about having my stuff taken away from me at the airport.  I’d probably cry, yes, sometimes I am that sensitive and immature, if they took away my medication gel … my mind would go spinning thinking about all the hot flashes, night sweats and insomnia I’d have on my planned trip. I checked the bottle and the ESTROGel is only 1.75 oz. Whew! 🙂

The TSA (Transportation Sercurity Administration) states:

Liquids, gels, aerosols, creams and pastes must be 3.4 ounces (100ml) or less per container … [my emphasis]

Medications …  are allowed in reasonable quantities exceeding three ounces, and they don’t have to be in the zip-top bag. [my emphasis] Declare these items for inspection at the checkpoint. TSA officers may need to open them for additional screening.

I told my doc about the insomnia I’ve been having and he had no real explanation basically chalking it up to post-anesthesia effects.  I’m not so sure about that because I’ve read not only with hysterectomies, but also with other surgeries that people sometimes do have insomnia post-op.  Of course, my immediate post-op period and the first few days that followed I slept incredibly well … almost too well!  I told my doc about my sleeping regime and he didn’t bat an eye simply told me if it’s working to keep it up.  When I do return to work, since I work closely with some very experienced anesthesiologists, I’m going to run the whole post-op, post-anesthesia insomnia issue by them and see what they have to say … I’m planning on asking more than one anesthesiologist too!

I brought up the HysterSister booklet (and website) to my doc —http://www.hystersisters.com/vb2/bookletorder.php … he hadn’t heard of the site or the booklet and said they might start telling their patients about it.  I gave them my copy of the booklet since I’d already read it.  I thought it was a great booklet and wished I had read it before my surgery, but the information was still incredibly helpful post-op.

And speaking of books I received my copy of The Essential Guide to Hysterectomy: Advice from a Gynecologist on Your Choices Before, During and After Surgery by Lauren F. Streicher, MD (2nd ed., copyright 2013).  I ordered the book used for less than $9 online (see link below).  I can’t offer any personal review of the book right now because I just got it today! 🙂 However, I did finish the chapter on Hysterectomy: Past & Present.  All I can say is holy cow I’m glad I live in this day and age … very interesting historical information.

http://drstreicher.com/books/the-essential-guide-to-hysterectomy/

Personally I think I’m probably past most of the information in the book being a nurse and already having had my hysterectomy … but I think it will help me with any post-op information and also help me educate future patients with information undergoing a hysterectomy.  I’ll be able to recommend the book too if it’s a good one!