Lupron - Page 2

Lupron, Surrogacy, and Multiple Sclerosis White Matter Lesions

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I decided to be a surrogate after watching a birth story on TV. I felt like it would be a meaningful way to give back. I was adopted as an infant and I wanted to help another couple have a baby of their own. I did some research, found an agency, met a couple, and went through reproductive screening at a fertility clinic. They explained to me that they would give me hormone injections to artificially stop my body from releasing an egg. I was a gestational surrogate, meaning I only carried the embryo. The embryo was made from a donor egg. Once they confirmed that I had not ovulated they would begin giving me estrogen to produce a uterine lining. After two weeks, it was time for the big day, the transfer of the embryo to my uterus. The embryo transfer was successful and so for twelve weeks following I took a daily injection of progesterone.

I am ashamed to say that I did not do my research and I did not know exactly what I was taking, other than “hormones”. I recall the potential side effects being listed as headache, fatigue and hot flashes and that these side effects were temporary and would dissipate after I stopped taking the medication. I remember glancing over the package insert for the leuprolide acetate (Lupron) noticing nothing was too alarming.

Post Lupron Symptoms

I went on to deliver a healthy baby boy in May of 2013, his parents were thrilled and it was time to focus on me again, get my body back in shape and move on with my life. It was August when I had my first “attack”. I was feeling extremely dizzy and had tingling in my left hand so I went to my primary care provider. She could not tell exactly what was going on but felt that the dizziness was caused by allergies and the numbness in my left arm caused by carpel tunnel. She sent me home with an antihistamine and a brace for my left arm. Eventually my symptoms subsided and I felt perfectly normal.

In January of 2014, I began feeling dizzy again, I tried an antihistamine and it just made me tired. The tingling and numbness came back in my left hand. I went to a different doctor who told me I had vertigo. The doctor tried a few tricks, such as hanging upside down and flipping up really quickly to try to “reset” my equilibrium (that didn’t work). The tingling in my arm was thought to be a pinched nerve in my neck because I lifted weights. Several days went by and I was still feeling terrible, the numbness was also occurring in my face. I was convinced I was having a stroke or that I had brain tumor. I went back to the doctor, insisting on an MRI. I was relieved when I was told that I did not have a tumor. The doctor said that I had signs of a demyelinating disease, such as multiple sclerosis. There are six lesions on my brain.

Multiple Sclerosis or Something Else?

Obtaining the actual diagnosis was a very long process which involved a lumbar puncture to check my cerebrospinal fluid for elevated levels of antibodies and a specific group of proteins called oligoclonal bands.  The findings indicated I did have elevated levels of the antibodies but that the group of proteins were not present. Still the neurologist felt that it was enough for a diagnosis for multiple sclerosis and prescribed a disease modifying drug, a three times a week injection. Multiple sclerosis cannot be cured but there are drugs designed to try to prevent the immune system from attacking the myelin sheath (protective nerve coating). I sought the opinion of another neurologist who had a specialty in multiple sclerosis. She agreed with the diagnosis of Relapsing Remitting Multiple Sclerosis, which is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks are followed by periods of partial or complete recovery. During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.

Another Surrogacy and Another Round of Lupron

During this process, I knew that I was going to be gestational surrogate again. I had already committed to the couple to carry a second child for them. I stopped taking my disease modifying drug and began the gestational surrogacy protocol again of Lupron, estrogen and progesterone. Thankfully we were successful on the first round as we were with the first baby. Many surrogates are not successful on the first round and go through the protocol over and over again.

I was advised by my neurologist that many women have an exacerbation of MS after birth, as it is very stressful on the body. He advised that I begin taking steroids immediately following the birth to prevent a relapse. I had a very traumatic birth, resulting in surgery and I decided I did not want to take steroids. I would take my chances with the relapse – nothing happened, I felt perfectly normal again.

I am currently not treating myself with the medication prescribed for MS. I have not had any new or worsening symptoms in three years and each MRI shows no new lesions, although I live daily with existing symptoms. I have damage to my trigeminal nerve causing constant pain and numbness in the left side of my face, I also have occasional numbness and tingling in my left arm and leg.

When I was first diagnosed, I searched for nearly every cause I could think of. There is no one in my family history with MS. I didn’t have a vitamin D deficiency. I didn’t have the Epstein-Barr virus or any of the other things thought to be linked to multiple sclerosis. I started searching though my life for anything unusual, which is when I finally researched Lupron. There have been less than 5% of adverse effects reported; however, neuromuscular conditions are listed. I have since learned that there are no clinical studies on the safety of Lupron for IVF and it is being used as an “off label” medication. This allows for it to be used for medical purposes that were not originally specified in the FDA’s approval of the drug and it is not on the labeling. I have reached out to many women online and have heard similar stories of MS, or MS like symptoms or other autoimmune conditions and the use of Lupron.

I feel that I was lucky, I only took Lupron for a short amount of time, many women take it for much longer and at higher doses, possibly causing more damage. I want women, potential surrogates, reproductive endocrinologists and fertility clinics to be aware of this. I want more research to be done on the hazards of the drug. I want to prevent the off-label use of medications.

Share Your Story

If you have experience with Lupron and/or with surrogacy would like to share your story, send us a note.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on February 13, 2018. 

Tank Estradiol and Lose Metabolic Flexibility: Pitfalls of Lupron and Oophorectomy

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Over the last several weeks, I have been looking at the role of estradiol in mitochondrial health. In the first post Hormones, Hysterectomy and the Aging Brain, we learned that estradiol depletion wreaks havoc on brain mitochondria turning them into misshapen donuts and blobs. Digging a little deeper, the next post (Lupron, Estradiol and the Mitochondria) pondered the connection between estradiol-depleting drugs such as Lupron, other Lupron-like drugs, and the devastating side effects that often follow suit. Could Lupron-mediated mitochondrial damage be at the root of these side effects? Quite possibly?  A question that remains is how. In this post, I will be digging even deeper into the role of estradiol in mitochondrial functioning, especially its role in something called metabolic flexibility.

A note of caution, while I focus on estradiol, the mitochondria, and what happens to health when we remove estradiol pharmaceutically via Lupron or surgically via oophorectomy, it is important to remember that estradiol is not the only hormone synthesized in the ovaries nor are the ovaries the only hormone-producing tissues. Moreover, the chemical castration induced by Lupron and other medications or via ovary removal disrupts and diminishes the synthesis of a myriad of hormones. Estradiol is simply where most of the research is focused, and so, it is where I too must focus, at least for the time being.

Steroid Hormones and Metabolic Flexibility: A Critical Factor in Post Lupron and Post Oophorectomy Ill Health

Steroid hormones regulate metabolic flexibility at the level of the mitochondria. Estradiol, the most frequently studied among the steroid hormones, plays a pivotal role in determining how food fuel is converted into cellular fuel or ATP.  When we eliminate estradiol with medications such as Lupron and other GnRH agonists or antagonists, or when we remove a woman’s ovaries, depleting her primary source for estrogen synthesis, metabolic flexibility diminishes significantly.  With the lack of metabolic flexibility comes several health issues, some noticeable, like weight gain, and others less noticeable, at least initially, like cardiac and neurodegenerative diseases. A common component of each of these conditions is mitochondrial dysfunction. Mitochondrial dysfunction can be initiated and accumulated via a number of mechanisms and over time, so estradiol is not the only variable, but it is a key factor that is often ignored.

Mitochondria

Mitochondria are the cellular powerhouses that consume oxygen and transform the foods we eat into a currency that cells can use (ATP) to perform all of the intricate tasks needed for survival and health. Mitochondria are also the site of steroidogenesis (steroid synthesis), immune signaling, and all sorts of other functions that determine cellular life and death. When you think about it, how well the mitochondria perform these tasks affects health at every level of organismal physiology. Without the appropriate amount of mitochondrial energy/ ATP, cell function becomes deranged, and ultimately, grinds to a halt. When that happens, disease is imminent. Indeed, genetic perturbations of mitochondrial function are some of the most devastating diseases known to medicine.

One has to wonder, what happens when we perturb mitochondrial function from the outside in – via toxicant exposure or by eliminating critical hormones or other co-factors such as nutrients that are necessary to mitochondrial operations? Worse yet, what if an individual with unrecognized genetic defects in mitochondrial functioning faces additional mitotoxicant exposures; what then? Complex, multi-system disease – that’s what. I would argue that mitochondrial dysfunction represents the final common pathway, a convergence point, connecting an array of seemingly disparate disease processes. Mitochondrial metabolism, and specifically, metabolic flexibility, may be at the heart of the derangement, with estradiol, and likely other hormones, in the driver’s seat.

Metabolic Flexibility: Adapt and Survive

When we think of stress and flexibility in general terms, it is easy to recognize that the more flexible one is in his/her behaviors or coping mechanisms, the easier it is for one to respond to, and survive stressors. Flexibility means that options exist for when everything hits the fan. Imagine if there were no options or if you had to respond to each and every stressful event in your life using exactly the same behaviors or response patterns. You would not get very far. The same holds true for cell behavior, and more specifically, mitochondrial behavior. The mitochondria need options to respond to the differing needs of the cells that they supply with energy. If those options become limited in any way, the mitochondria become less effective. They produce less energy, scavenge fewer oxidants (toxicants), and when stressors present, cannot easily adapt. In fact, the more inflexible the mitochondria are forced to become, the less likely they, and the cells, tissues, organs, and organism within which they reside, will survive. Estradiol is integral to mitochondrial flexibility. Remove the estradiol and the mitochondria become less metabolically flexible and less able to respond to the demands of a changing environment.

Estradiol Equals Increased Mitochondrial Efficiency and Decreased ROS

Estradiol maintains metabolic flexibility via two important mechanisms: increased mitochondrial efficiency and ROS management. With the former, estradiol regulates metabolic flexibility by altering the expression of genes that control the enzymes within the fuel conversion pathways. It is a complex algorithm of responses, with some proteins upregulated and others downregulated. The net result, however, favors increased efficiency in ATP production by maximizing metabolic flexibility or adaptability to the environment.

With the latter, estradiol, along with progesterone, manage the clean-up tasks inherent to any energy production process. In effect, estradiol manages ROS both on the front end and the back end of mitochondrial ATP production. On the front end, increased metabolic efficiency and flexibility equals fewer ROS byproducts. On the backend, estradiol cleans up the byproducts of processing -ROS – and tempers the damage these byproducts can cause.

Estradiol, Pyruvate, and ATP

Of particular interest to our work here at Hormones Matter, estradiol upregulates a set of enzymes called the pyruvate dehydrogenase complex, PDC. The PDC, responsible for converting glucose into pyruvate, is the first step in the long process that nets multiple units of mitochondrial ATP. The PDC is key to carbohydrate metabolism and more recently has been linked to fatty acid metabolism, making this enzyme complex central to mitochondrial energy production. Diminished PDC derails mitochondrial functioning, producing serious diseases. Children born with genetic pyruvate dehydrogenase deficiency suffer serious neurological consequences and rarely live to adulthood.

Importantly, the PDC (like all of the enzymes within these cascades) is highly dependent upon nutrient co-factors to function properly. Thiamine and magnesium, are critical to the PDC complex. Since PDC function demands thiamine, children and adults with thiamine deficiency also suffer significant ill-health, ranging from fatigue and muscle pain, to disturbed cognitive function, disrupted autonomic function affecting multiple organs, psychosis, and even death if not identified. Thiamine deficiency is most well known as a disease associated with chronic alcoholism but has recently begun re-emerging in non-alcoholic populations relative to medication and vaccine reactions.  Many medications and environmental variables deplete thiamine and magnesium, diminishing mitochondrial function significantly, by way of pyruvate.

Along with nutrient co-factors, estradiol is critical for pyruvate. Estradiol upregulates the expression of the enzymes that make up the PDC (in the brain). If estradiol is reduced or blocked, mitochondrial ATP production will take a hit. If estradiol is blocked in an already nutrient-depleted woman, the first step in mitochondrial fuel conversion would take a double hit. One can imagine the consequences.

In light of the direct role that thiamine, magnesium, and other nutrients play in the cascade of reactions required to produce ATP, can we maximize mitochondrial functioning with nutrients to compensate for the mitochondrial damage or deficiencies likely to occur post oophorectomy or as a result of GnRH agonist or antagonist drugs, like Lupron? I can find no research on the subject, but it is certainly a topic to explore given the millions of women already suffering from the mitochondrial damage induced by Lupron and/or pre-menopausal ovary removal. Even without the necessary research, correcting nutrient deficiencies and dietary issues should be undertaken for general health.

Another question in need of exploration, if we maximize mitochondrial functioning, does that then increase steroidogenesis in other endocrine glands? A section of the adrenal glands called the zona reticularus, for example, produces a complement of hormones similar to those of the ovaries. In postmenopausal women androgens, precursors for estradiol, produced by the adrenals account for a large percentage of total estradiol production. Could we take advantage of that to help stabilize circulating hormones?

Finally, beyond the nutrient requirements for mitochondrial ATP production, enzymes throughout the body, even those involved in post-mitochondrial steroid metabolism, require nutrient co-factors to function properly. Could we maximize those enzymes for more efficient steroid metabolism to net sufficient estradiol to maintain mitochondrial function?

What about Natural Declines in Estradiol?

It is not clear how menstrual cycle changes in estradiol affect mitochondrial functioning or how the postpartum decline in pregnancy hormones affects mitochondria. One would suspect there are compensatory reactions to prevent damage, but this has not been investigated. In natural menopause, however, researchers have noted that some form of compensation occurs as estradiol declines and, at least for a time, and in rodents, mitochondria maintain efficient production of ATP. In contrast, no such changes are noted with premature menopause or oophorectomy.

Also not investigated sufficiently, is the impact of chronic synthetic estrogen exposure on mitochondrial functioning. In other words, what are the effects of oral contraceptives, HRT, and the growing list of environmental endocrine disruptors, on mitochondrial ATP production? Since these compounds bind to estrogen receptors and displace the endogenous estrogens like estradiol, some evidence suggests endogenous production of estradiol is reduced. Do the mitochondria respond also by downregulating estrogen receptors or by some other mechanism?  Short-term, animal research suggests that supplementing 17B estradiol post oophorectomy reduces mitochondrial damage. In research in humans, where synthetic estrogens are used, results are less clear and longer-term studies do not exist beyond the broad brush strokes of epidemiology.

Metabolic Flexibility and Tissue Type

One of the more interesting aspects of estradiol’s role in metabolic flexibility is that it is site or tissue-specific and may point to novel therapeutic opportunities. Since different cell types, in different parts of the body, prefer different fuels for power to survive, when we eliminate estradiol from the equation, mitochondria from different tissues or organs respond differently to the lack of flexibility. Perhaps, we can utilize the information about fuel requirements to design diets that compensate for diminished metabolic flexibility.

Heart Cells. I’ve written about this research previously, not fully understanding the implications. Estradiol allows cardiomyocytes (heart cells) to switch from their preferred fuel of fatty acids to glucose during stressors such as heart attacks (and theoretically during any stressor like exercise). That ability to switch fuel types is protective and allows the cells to survive and heal. It may explain why women are more susceptible to heart damage post-menopause when endogenous estradiol declines. This may also point to a pathway for post oophorectomy and post Lupron declines in normal heart function.

Brain Health. Declining estradiol affects brain mitochondria differently. As I noted in a previous post, without estradiol, brain mitochondria become progressively less functional and misshapen. These structural changes impair mitochondrial ATP production. Unlike the heart, however, the brain prefers glucose as its primary fuel source. Estradiol appears to enhance glucose uptake from the periphery and across the blood-brain barrier. When estradiol is absent, brain glucose uptake diminishes significantly (in rodent studies), leaving the brain perpetually starved for glucose.

We know from brain cancer research, that with declining brain glucose, secondary fuels can kick in, but only when the mitochondria have sufficient flexibility to switch. For example, mitochondrial fuel flexibility is critical to battling brain tumors. Under conditions of stress and when brain glucose concentrations are low, healthy mitochondria can readily transition to ketone bodies for energy, at least in vivo. The transition from glucose to ketone bodies is believed to be an evolutionary adaptation to food deprivation allowing the survival of healthy cells during severe shifts in the nutritional environment. Estradiol appears to be key in maintaining that flexibility.

Weight Gain and Fat Accumulation. Post-menopausal, post-hysterectomy, and oophorectomy weight gain are well established research findings. Anecdotal complaints of Lupron weight gain are also common. These findings may be related to derangements in metabolic flexibility mediated by the relationship between estradiol and mitochondrial functioning. The increased lipid or fat accumulation in skeletal muscle though associated with impaired insulin-stimulated glucose metabolism may be related to the reduced capacity to adjust to a changing fuel environment. More specifically, weight gain may represent a declining ability to utilize fats effectively as a mitochondrial fuel source, possibly via a derangement in a mitochondrial channel responsible for shuttling fats and cholesterol into the mitochondria for processing. When the mitochondria become less flexible, a channel called the TSPO, shuts down, disallowing fats that would normally be shuttled into the mitochondria and processed for ATP (and steroid hormones), from entering. Instead, they are stored peripherally in adipocytes. I wrote about this in detail here: It’s All about the Diet: Obesity and Mitochondrial Dysfunction. It is possible in estradiol-depleted women that TSPO downregulation is a compensatory reaction to diminished metabolic flexibility.

It is also conceivable that the lack of brain glucose, as discussed above, leads to overeating and, more specifically, cravings for sugary foods. This would be a logical compensatory reaction to bring more fuel to the brain; one likely meant only for the short term and that when held chronically begins the cascade of other metabolic reactions known as obesity, diabetes, and heart disease. Perhaps, just as fat storage becomes a survival mechanism when mitochondria can longer process it effectively, the craving for sugar in estradiol-deprived women is also a survival mechanism.

Finally, adipocytes can synthesize estradiol. It is conceivable that in response to declining estradiol concentrations, the body stores fat to produce more estradiol.

Final Thoughts

Central to mitochondrial dysfunction, whether by genetic predisposition or environmental influence, is the inability to efficiently produce ATP (the fuel that all cells need to survive) and to effectively manage the by-products of fuel production and other toxicants. Estradiol plays a huge role in both of these processes. Eliminate estradiol and mitochondrial functioning becomes less efficient and less flexible initiating cascades of chronic and life-altering conditions. This suggests the ready application of medications like Lupron that deplete estradiol or the prophylactic removal of women’s ovaries is misguided at best, and dangerous at worst.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

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Image by Triggermouse from Pixabay.

This post was published originally on Hormones Matter on February 11, 2015. 

Puberty Blocking Drugs

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On Twitter I came across a post from a physician suggesting that 1) puberty-blocking drugs were completely safe and reversible and 2) that for one to believe otherwise suggested a bias in that individual. Having studied these drugs when they were used across various women’s health modalities, long before they were used so broadly for this current application, I can say without a doubt that these drugs are neither safe nor are their effects completely reversible. As far as the bias argument goes, while it is true that many individuals use these and other hormone-modulating drugs as cudgels in various culture wars, to foreclose upon a discussion of drug safety a priori for fear of being aligned with a particular viewpoint is medical negligence pure and simple. Every drug, no matter its cultural or political significance carries with it certain risks. Those risks are not minimized because we want them to be or because we choose not to recognize them. That is not how pharmacology works. Heck, that is not how life works.

We see this type of behavior with hormonal birth control. If one dares to question the safety of these drugs, one is accused of being anti-women’s rights. We see this in discussions of vaccine safety. If one dares to question the safety of vaccines, one is accused of being anti-vax, or more recently, anti-science. We now see it with the puberty-blocking drugs where if one dares to question the safety of these drugs, one is accused of being anti-trans. In all cases, the ‘anti – [fill in the blank]’ label serves the manufacturers of these drugs well. So long as we bicker amongst ourselves, so long as the drug itself can signal some sort of inherent virtue or lack thereof, the safety of these drugs can never be impugned.

What many in the current battle fail to recognize, is that these drugs have been on the market for decades, first as a treatment for prostate cancer, then and currently as ‘treatments’ for endometriosis, fibroids, ovarian cysts, precocious puberty, and with in vitro fertilization. In every case, those who take these drugs are rendered chronically ill. These are drugs neither new nor safe, or even specifically designed for their current application. They have simply been rebranded to take advantage of a new market.

What do these drugs do? Technically, they override the hypothalamic-pituitary-gonadal or ovarian feedback loops that control the synthesis of the androgens and estrogens, the sex hormones. They do so at the level of the hypothalamus in the brain by overriding the production of something called gonadotropin-releasing hormone (GnRH). This then prevents signals to and from the pituitary gland and the testes and ovaries from fully cycling, effectively blocking the synthesis of testosterone, estradiol, and some of the other metabolites. Non-technically, and more accurately, they chemically castrate the user, by severely and immediately blocking the synthesis of the reproductive hormones, testosterone, and estradiol.

This begs the question, why would anyone think this type of drug would be a safe option for anyone, let alone children? Compartmentalization.

Within the current medical framework, reproductive hormones are believed to affect only the reproductive organs and nothing more. So if we block them, we needn’t worry about anything but their direct effect on reproductive tissues. This framework allows one to see only what one wants to see. It is the framework that buys into such silliness that we can fundamentally alter the regulation of these hormones without so much as affecting anything else in the body or the brain. Nothing. Nada. Nil. Reproductive hormones control reproduction and that is it. If one buys into this nonsense, well of course we can postpone puberty by using some of these drugs, and when ready reverse course, open the spigot and let puberty flow. Easy peasy.

Not only is this framework completely ignorant of how the body works, but blatantly negligent. The body is connected to itself. Its individual parts are not separate entities. Its systems do not work in isolation from each other, especially not hormones. Steroid hormones are synthesized and metabolized from each other and into other steroid hormones. They are part of extensive pathways that are constantly reconfiguring based on all sorts of endogenous and exogenous signals. Steroid hormones organize and activate critical systems relative to sex and development but are not limited to just those related to sex and reproduction. They modulate every cell in the body. There are steroid hormone receptors on the neurons in the brain that modulate neurotransmission (and vice versa), on the cardiomyocytes that influence heart rate, rhythm, and pressure, on muscle and bone cells that regulate growth and stability, on immune cells that influence inflammation and other patterns, and on the mitochondria, where cellular energy and all sorts of other processes, including steroidogenesis, are managed.

Estrogen receptors, for example, are all over the brain and are responsible for upregulating hundreds of genes involved in all sorts of brain activity, not just those involved in the development of sex characteristics or reproduction. These hormones are so important to brain function, that the brain not only allows them to cross the blood-brain barrier but also synthesizes these hormones de novo – from scratch. On the mitochondria, the estrogen receptor influences the shape of the mitochondria, such that in the absence of estradiol, a hormone blocked by these drugs, the mitochondria become misshapen, only to die a messy, necrotic death.

This begs the question, if these hormones are so important to general functioning, what do we think happens when we block their production, especially during a critical phase of development when the totality of the organism is poised for a huge growth and development spurt? Do we think somehow that magically only reproductive function is affected? That all of those other hormone-influenced cells will not be affected? Or that the other hormone pathways will not be affected. Or that the mitochondria, the energy engines of the cells, will somehow function just as well absent a critical substrate? Apparently, we do.

While there are people for whom these drugs represent an existential threat to their narrow ideologies, for most of us, questioning the safety of these compounds has nothing to do with ideology or bias and everything to do with the chemistry.

For more information on mechanisms, ill effects, and the long history of unethical marketing of this class of drugs, please read the various articles on Lupron. That is the name under which this type of drug is used in women’s health. This study illustrates the scope of injury.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

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Short and Long Term Consequences of Lupron for Precocious Puberty

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As a child, at around age 5, I started experiencing severe pain in my legs and back. I had migraines from hell that made me feel as if my head were going to explode. I had hair in places that no five-year-old should and I needed a bra for kindergarten. I looked down on all my peers because I was a good 12 inches taller than most of them. I always had to be the mom when playing house in kindergarten. My parents struggled to find help for me because no doctor could explain why I hurt and felt the way I did. Finally, after being hospitalized for over a week my parents had answers. I was diagnosed with a hormone imbalance. The doctors in the area where I lived had no answers about how to treat me, so I was sent to a specialist in Augusta Georgia. He then called my diagnosis precocious puberty, a hormonal imbalance. After more needles and tests, he decided to start me on Lupron.

I took Lupron as a child from 1989 to 1994 for my hormone imbalance. I received a shot once a month in my thigh and sometimes in my butt cheek. I can remember the burn of the Lupron going into my body like it was yesterday. The injection always took me a week to recover from. I experienced soreness in the injection spot and redness every time I received Lupron. I could not run and play as a child. My legs either hurt or my mind would make me feel as though I had no purpose. From the outside, the Lupron shots were a success. The shots slowed my abnormal hair growth in private places and stopped my breast from growing, but on the inside, where it counts, what was the Lupron doing to me?

After being on the Lupron for half a year, I had lumps in my thighs where I received the injections (which I still have today). One time it crippled my legs, leaving me on crutches for two months when I was 7 years old. Yet still, I guess my doctor felt it would be more beneficial for me to continue my treatment with the Lupron because I received injections for 3 to 4 more years.

While on Lupron, I struggled daily to focus. I had blurred vision. I battled depression and I hurt daily. I couldn’t be active in sports due to my low bone mass and what kid feels like playing ball when her body feels like it’s been beaten with the bat already? By age 11, I finished up my treatment. I saw my doctor a handful of times after and then I was written off as cured, and I did feel good and enjoyed life for a few years.

At age 15, I began to battle depression. I struggled to remember things. I was diagnosed with asthma. My sight was getting worse and I had an eating disorder where I never wanted food due because my stomach felt like someone was squeezing it with all their might. I fainted several times because I was dizzy. I struggled to stand and I would walk holding onto things. My legs, arms, fingers, and toes would tingle and go numb. My doctor at the time seemed to always just prescribe me Lortabs for the pain and never dug any further to figure out why I felt the way I did. At age 17, I overdosed on Lortabs not trying to hurt myself but only trying to find relief from the pain. I didn’t realize that my body couldn’t handle all the medicine I was putting into it. My mom found me in my room and rushed me to the hospital where my stomach was pumped and I had to drink this disguising chalky drink. My pain seemed to decrease shortly after I turned 20. I looked and felt like the average healthy person. I had my first baby at 21 and my second at age 22. I had healthy pregnancies and healthy babies. I had my third baby at age 32 and again I was a healthy mama and had a healthy baby.

For the past two years, however, I have been experiencing a pain that is all too familiar. I feel as though my body and mind are failing me. I cannot pinpoint why all of this is happening to me. I am now 34 years old and experiencing horrific body aches and pains. I’m searching for answers as I struggle to hold my baby and even get out of bed due to the pain I feel. I hurt in all my joints, my back, my neck and I have leg pains that put me on my knees and unable to walk. My feet and ankles swell, my arms, fingers, and toes tingle with pain. I sometimes drop things because I can’t squeeze my fingers together to hold them. I am experiencing night sweats, hot flashes, nausea, and abnormal weight loss. I have dropped 90 pounds in 15 months. My stomach hurts every day and I never feel hungry. I have so many other symptoms, I feel as though I’m falling apart. I am working with my doctor now to try and find answers. I want to find quality in my life again. I want to feel good when I wake up and not have to lay in bed for at least an hour (waiting for pain meds to kick in) before I can move. Most importantly, I want to be able to pick my baby up out of her crib and hold her and not cry because it hurts my body so bad.

I am in the beginning stages of trying to figure out why I feel this way. I have had blood work drown which was good and I have a CT scan this week. It never even crossed my mind that all of this could be the side effects of taking Lupron as a child until I started reading other people’s stories. Please help?? What test do I need to take to help find answers? What meds are helping restore bone mass? What are other past Lupron patients experiencing and what is working to help them find quality in life again? Thanks in advance for your help!

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

This story was published originally on June 18, 2018. 

Endometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration

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I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.

Early Warning Signs

1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.

1998: started feeling off, not sure yet at this point still very young

2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.

2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.

2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.

2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.

2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.

The Lupron Disaster

September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt.  I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.

At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.

Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix

2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head.  I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.

I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.

2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.

Was it Endometriosis All Along?

2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.

Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.

Mitochondrial Damage and Autonomic Disintegration

April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.

2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits

2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.

In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.

We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.

Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.

2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.

I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also.  Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.

2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.

I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.

This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.

Supplement List

Upon waking:

  • 600mg potassium,
  • 1 1/4 grain Naturethroid

Breakfast:

  • 3 200mg potassium. Daily total 1200mg
  • 1 Chewable Hydroxo B-12
  • 1 COQ10 100MG
  • 1 Biotin 10,000mcg chewable
  • 1 Chromium picolinate 200mcg chewable
  • 1 Desiccated adrenal from Standard process
  • 1 magnesium malate 100mg
  • 1 Thiamin 50mg
  • 1 Mitocore – it is like a multiple vitamin
  • 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.

Mid-morning:

  • 3 200mg potassium again – daily total 1800mg
  • B12 shot, a 100iu syringe

Lunch:

  • 3 200mg potassium, daily total 2400mg
  • 1 vitamin A 10.000iu
  • 1 vitamin K 90mcg
  • 1 Lugol’s iodine plus
  • 1 nettle leaf cap 400mg
  • 1 Monolaurin 600mg
  • 2 L-lysine 1000mg
  • 1 thiamin 50mg
  • 1 magnesium malate 100mg
  • 1 more Hydroxo B12

Diner:

  • 3 200mg potassium, daily total 3000mg
  • 1 thiamin 50mg
  • 1 milk thistle 150mg
  • 2 L-lysine 1000mg
  • 1 DHEA 25mg
  • 1 magnolia bark 450mg
  • 1 Digestive enzymes
  • 1 Dr. Berg Hair formula.
  • 1 L-carnitine 250mg

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.

Posted originally on Aug 20, 2019.

Recovering From Medically Induced Chronic Illness

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Unexplained or Medically Induced Chronic Illness?

“Unexplained.”  That’s what doctors say about chronic illness. Conventional medicine says, ‘learn to live with it.’ Rather than offer a true treatment or cure for these debilitating conditions, they suppress the immune system and offer more drugs for depression and anxiety – none of which are effective. I’m here to tell you that common wisdom is wrong. I know, because my own lucky story proves we can heal from chronic illness. Pharmaceutical insults created my disabling illnesses  – Chronic Fatigue, Fibromyalgia, estrogen dominance, adrenal fatigue, POTS, Graves’ Disease, Hashimoto’s, Bell’s Palsy, infertility and more. I share my journey to offer hope. The doctors were wrong. I have recovered and am once again, healthy.

Early Clues and Pharmaceutical Insults

My childhood had some clues – things I now know predict chronic illness. My lymph glands swelled when I was otherwise healthy. Mosquito bites turned into angry 3” welts. Childhood bunions and hyper-mobile joints suggested leaky gut. All these issues correlate with chronic illness and, seen in hindsight, hint at the difficulties that awaited me in adulthood.

My immune system may have been awry from the start, but pharmaceuticals tipped the scale toward chronic illness. As a teen, I took birth control pills for heavy periods and cramps. When vague symptoms appeared in my early twenties, I asked about pill side effects. The gynecologist laughed at the idea, but I trusted my gut and finally stopped the pill. I felt better in some ways but developed new symptoms.  Sleep became difficult. I was hypersensitive to noise and light and struggled with unquenchable thirst.  The doctor suggested my extreme thirst stemmed from hot weather and salty foods. This explanation didn’t add up to me, but I was young and so was the internet. I had no resources to connect the dots. Today, I recognize that 10 years of hormonal birth control created nutrient deficiencies (folic acid, vitamins B2, B6, B12, C, and E, along with magnesium, selenium and zinc) while also raising my risk for future autoimmune disease.

Recurrent UTIs, Fluoroquinolones, and New Onset Graves’ Disease

A few years later, recurrent urinary tract infections led to many doses of the fluoroquinolone antibiotic, Cipro. Cipro now carries a black box warning and is known to induce mitochondrial damage. My mid twenties also brought pre and post-menstrual spotting and bleeding for 10 days each month. Doctors did nothing for my hormonal imbalance but diagnosed Graves’ disease (hyperthyroidism). Everything about me sped up. Food went right through my system. I was moody. My mind was manic at times. I was unable to rest and yet physically exhausted from a constantly racing heart.

The doctor said Graves’ disease was easy – just destroy the thyroid and take hormone replacement pills for the rest of my life. I didn’t have a medical degree, but this treatment (RAI, radiation to kill the thyroid) just didn’t make sense. Graves’ disease is not thyroid disease. It is autoimmune dysfunction, where antibodies overstimulate a helpless thyroid.

As I studied my options, I learned that RAI could exacerbate autoimmune illness and many patients feel worse after treatment. It was surprising to find that the US was the only Western country to recommend RAI for women of childbearing age. Armed with this knowledge, I declined RAI and opted for medication. The endocrinologist mocked my decision. I was in my 20s and standing up to him was hard, but it marked a turning point and spurred me to take responsibility for my own health, rather than blindly trusting doctors. Recent reports suggest RAI treatment increases future cancer risks. My Graves’ disease eventually stabilized on medication, although I never felt really well. I pushed for answers for my continued illness, but doctors refused to test my sex or adrenal hormones.

IVF and More Damage to My Health

Things turned south again when I was unable to conceive. The supposed best fertility clinic in Washington, DC could not find a cause for my infertility. I’ll save that story for another day, but the short version involved a few years of torment and four failed IVF attempts. The fertility drugs and the stress worsened my overall health considerably.

Our last try at pregnancy was with a specialist who practiced functional medicine. Labs and charting uncovered a clear progesterone imbalance, and also explained my spotting. This simple diagnosis was completely missed by the conventional fertility clinic. A brief trial of progesterone cream resulted in two naturally conceived, healthy pregnancies. Isn’t it remarkable that several years and over $100,000 failed to produce a baby with IVF and $20 of progesterone cream on my wrist did the trick? This could be a cautionary tale about profit motive in modern medicine, but that, too, is a topic for another day.

Years of Conventional Medicine: Thyroid Damage, Autonomic Dysfunction, and Profound Fatigue

I weaned off thyroid medications and felt fairly well after my babies, but my system took a big hit when life brought an international relocation. The move was intensely stressful and my health sunk after we landed half a world away. I had no energy, gained weight, and lived in a fog. The tropical heat and humidity of Southeast Asia felt like a personalized form of torture.

Perhaps the stress of our move left me vulnerable to the reappearance of autoimmune and adrenal dysfunction, as my next diagnosis was Hashimoto’s Disease and adrenal fatigue. Doctors ordered functional medicine tests (hair, organic acids, stool, saliva cortisol and hormones) that identified nutrient imbalances, but their treatment ideas fell short. Despite replacement hormones and supplements by the handful, I remained very sick, with profound exhaustion, brain fog, sleep disruption, pain, and terribly imbalanced sex hormones.

Taking Matters Into My Own Hands

If setbacks have a bright side, it is in the drive to get better. I started studying when my doctors ran out of ideas to treat my illness. Fibromyalgia was the best description of my pain, but I knew conventional medicine offered no help for this condition. I dug into the topic and found the work of Dr. John C. Lowe, who used T3 thyroid hormone for fibromyalgia, and Paul Robinson, creator of CT3M, the circadian method for using T3. CT3M and high daily dose of progesterone cream improved my quality of life in the short term. Near daily bleeding eventually regulated back into a normal cycle and my adrenal function improved greatly.

Postural Orthostatic Tachycardia Syndrome (POTS) was the next bump, bringing a very high heart rate, very low blood pressure, heat intolerance, and extreme sweating on the lightest activity. By this time, I didn’t even ask the doctor for help. My research pointed to salt and potassium, and so I drank the adrenal cocktail and salt water daily. POTS symptoms vanished quickly with this easy strategy, as did the nocturnal polyuria that plagued me for many years.

I steadied after this time. I was not well but functional, despite some major life stressors, including another international move and a child’s health crisis. Even though I managed the daily basics, things like house guests, travel, or anything physically taxing required several days to a week of recuperation.

The Next Step: Addressing Nutrient Deficiencies

The next step in my recovery came thanks to a B12 protocol that includes co-factor nutrients, developed by Dr. Gregory Russell-Jones. Addressing the deficiencies connected to B12 helped and things progressed well until I had a disastrous reaction after eating mussels, which I hoped would raise iron levels. I vomited for hours and stayed in bed for days. I kept up the B12 protocol, but just couldn’t recover. Largely bedridden, and napping 4 hours at a stretch, I got up in the evening only to drive to a restaurant dinner, too exhausted to prepare food or deal with dishes.

Debilitating exhaustion lasted for a month, and then two, with no relief. It was an awful time, but hitting rock bottom proved a blessing in disguise, as desperation turned me back to research. Slowly, I pushed through brain fog and started to review studies on chronic fatigue and fibromyalgia. This led me to a promising Italian study using thiamine for these conditions.

Studying thiamine, it seemed plausible that the allergic reaction to mussels drained my B1 reserves, making it impossible to recover. Inspired by the research, I started on plain B1 at very high doses. To my surprise, I felt better right away. The first dose boosted my energy and mental clarity.

I continued to learn about B1’s benefits, thanks to this website and the text by Drs. Marrs and Lonsdale.  Two weeks went by and thiamine HCL seemed less effective, so I switched to lipothiamine and allithiamine, the forms recommended in Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. WOW. What a difference! Virtually overnight, my gears began to turn, and I felt better with each new day. In a single month, I went from bedridden to functioning well 2 out of every 3 days. I had ideas, I had energy, and I could DO things. The setback days were mild and disappeared entirely after 2 months on thiamine.

At the 2 month mark, I had to travel for a family emergency. My pre-thiamine self would have needed at least a week of rest following this kind of trip, and I expected pain and fatigue as I stepped off the plane. But to my great surprise, I felt well! I remember walking through the airport late that evening and thinking it felt amazing to stretch my legs. Maybe that sounds like an ordinary feeling, but years of chronic fatigue and fibromyalgia conditioned my body to stop, to sit, whenever possible. It was entirely novel to FEEL GOOD while moving! The next day came and I did not collapse, I did not require days to recover and was able to carry on like a normal person. It was a remarkable change in an unbelievably short time.

Recovery From Conventional Medicine’s Ills Came Down to Thiamine

Getting better feels miraculous, but it’s not. The real credit for my recovery goes to experts like Dr. Marrs and Dr. Lonsdale who spread the word about thiamine. Despite years of illness and dead ends, I believed I could heal and I kept trying. Tenacity eventually paid off when posts on this site helped connect the dots between my symptoms and thiamine deficiency. More than anything, my recovery is a story of tremendous luck, as I finally landed upon the single nutrient my body needed most.

The difference between my “before thiamine” and “after thiamine” self is beyond what I can describe.  Birth control, Cipro, and Lupron created nutrient imbalances and damaged my mitochondria, leading to multiple forms of chronic illness in the years between my 20s and 40s. Replacing thiamine made recovery possible by providing the fuel my damaged cells so badly needed. At this writing, I am 7 months into high dose thiamine and continue to improve. I have not experienced any form of setback, regardless the stressors. My energy feels close to normal, the pain is resolving, and brain fog is a thing of the past. My sense of humor, creativity and mental functioning are all on the upswing. I owe thanks to the real scientists who dare to challenge wrong-headed ideas of conventional medicine, and who provide hope for these so-called hopeless conditions. My wish is that this story will do the same for someone else.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Why Lupron is a Poor Diagnostic Tool for Endometriosis

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In my work with The Endometriosis Network Canada, I have heard many women say that their doctors told them that if their pain does not go away on Lupron, then the pain must not be from endometriosis. Lupron never has and never will be an effective tool for diagnosing whether pain is due to endometriosis. Not only does Lupron have the potential for significant side effects, which alone should abrogate its use as a diagnostic tool, but it also is not at all effective at diagnosing endometriosis and distinguishing it from other conditions.

Lupron is a synthetic version of a naturally occurring hormone called gonadotropin-releasing hormone, and its action is actually stronger than the naturally occurring GnRH. It is a long-acting medication that initially stimulates hormones in the pituitary gland that control the menstrual cycle, and then suppresses these functions. It is typically given as a 1 month or 3 month injection.

Lupron Side Effects

Lupron therapy is associated with a significant potential for side effects. One of the biggest problems with Lupron is its effect on bone density (it can decrease bone density), and this effect is not always completely reversible after Lupron is discontinued. Lupron can also cause joint pain, which in some cases is permanent. Other potential side effects include hot flashes, vaginal dryness, headaches, mood swings, decreased interest in sex, depression (in some cases severe), cognitive problems, fatigue, acne, headaches, and upset stomach. Personal stories of women’s experiences of the downside of Lupron can be found here, here, here, here, and here.

Given all of these side effects, you might be wondering: why would anyone subject themselves to the potential for at best, a month of these side effects, and at worst, a lifetime of some of them, for the purpose of diagnosis? Even from the side effect perspective, using Lupron to try to diagnose endometriosis seems like a bad idea. But now we come to the more technical part of the discussion, which will address whether Lupron could even work as a diagnostic tool for endometriosis.

How to Evaluate a Diagnostic Tool

To evaluate the effectiveness of a diagnostic tool, the two measures that are used are called sensitivity and specificity. Sensitivity addresses the question of how often the diagnostic tool will pick up the disease, in people who have that disease. Specificity addresses the question of how often the test will be positive in people who actually do not have the disease (but may have conditions other than the one you are testing for). A good diagnostic test will pick up the presence of the condition in most people who have it, while not testing positive in people who may have similar symptoms but have a different disease. In other words, a good diagnostic test will have fairly high sensitivity and specificity.

All devices or tests that are approved by regulatory agencies as diagnostics have to undergo testing to demonstrate sufficient sensitivity and specificity. Lupron has not undergone such testing, because it was not developed as a diagnostic, and is not meant to be used as one. However, given the clinical trials that were done looking at the effectiveness of Lupron as a drug therapy, it is clear that the sensitivity and specificity of it as a diagnostic would not support its use in that way.

Lupron as a Diagnostic?

The clinical trial data published by the manufacturer in its prescribing information can be illuminating when considering its sensitivity and specificity for diagnosing endometriosis. The clinical trials used several measures to assess response to the drug, such as pelvic pain, dyspareunia (pain with intercourse), dysmenorrhea (pain with periods), and pelvic tenderness. The results showed that Lupron was by far the most effective at treating dysmenorrhea, compared to the other symptoms. Almost 90 percent of study participants had dysmenorrhea before taking Lupron, and after 6 months of treatment, fewer than 10 percent still had dysmenorrhea. (Not surprisingly, within 6 months after completing treatment, about 80 percent had dysmenorrhea again.) Looking at endometriosis symptoms other than pelvic pain, about 75 percent of study participants had pelvic pain at the start of the study, and 45 percent still had pelvic pain at the end. Lupron was similarly less effective at treating other symptoms of endometriosis.

From these results, we can get an idea of what the sensitivity of Lupron as a diagnostic would be. Imagine giving Lupron to a group of women with endometriosis, whose symptoms will vary from primarily dysmenorrhea, to all different types of pelvic pain at different times (or in some cases, all times) of the menstrual cycle. Those who have primarily dysmenorrhea will feel that their pain has been treated, whereas, because it is less effective on all other types of pain and symptoms, some women may feel that their pain did not decrease at all (remember, 45 percent of women still had pelvic pain after 6 months of Lupron). This is why it is completely incorrect for any doctor to say that if a woman’s pain did not decrease on Lupron, the pain cannot be from endometriosis. Therefore, the sensitivity of Lupron as a diagnostic for endometriosis is predicted to be poor, because in a significant number of women who actually do have endometriosis, it will not treat their pain substantially.

The specificity of Lupron as a diagnostic would be even worse. Clearly Lupron is effective at treating dysmenorrhea, because by its very mechanism of action it puts a woman into chemically-induced menopause, and you cannot have dysmenorrhea when you are not having periods. However, there are many causes of dysmenorrhea other than endometriosis. So even if Lupron does work to treat a woman’s pain (by preventing periods), this does not ensure that the cause of the pain was endometriosis.

A Call for More Research

There is no doubt that women would benefit greatly from a non-invasive diagnostic test for endometriosis, given that surgery is currently the only way to definitively diagnose it. However, Lupron is not sensitive or specific enough to be useful diagnostically. New diagnostic tests have been developed for many other diseases using recent advances in technology such as imaging methods, blood biomarkers, next generation sequencing, and others. A sensitive and specific diagnostic test for endometriosis is desperately needed. However, with so little funding going to basic and applied research into endometriosis, it is unlikely that this need will be met until this funding situation improves. As Siddhartha Mukherjee said about cancer in his book The Emperor of All Maladies:

“A disease needed to be transformed politically before it could be transformed scientifically.”

This is the situation that cancer research was in, during the 1940s, and sadly this is where we are at now, with endometriosis, a disease that affects one in ten women and has for centuries, in 2016.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on March 14, 2016. 

Lupron Induced Osteoporosis?

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Women who suffer with endometriosis do not have many options for treatment. As a result, many women try Lupron because they are desperate to be pain and symptom free. I was one of these women. In 2011 and 2013, I tried Lupron for a total of three doses and wish I knew then what I know now.

In 2010, I was diagnosed with endometriosis laparoscopically. After that, I tried everything from many different types of birth controls and pain medications to depression medications that can also be used to treat pain. Nothing worked. My doctor at the time suggested Lupron to me and I was desperate. I felt like I had already put my life on hold long enough because of this disease and just wanted to be out of pain. However, now I feel like I am suffering the consequences and it didn’t even get rid of my pain.

In 2015, I was diagnosed with osteoporosis. Prior to this, I had never had a bone scan done, not even before being administered Lupron. In 2009, I was diagnosed with Vitamin D deficiency and have been taking a supplement ever since. Three months before being diagnosed with osteoporosis, I stress fractured my knee and was told at my age, it should not have happened. In 2014, I had a hysterectomy because of endometriosis; I couldn’t take the pain anymore and had disease on both ovaries.

Before this, I had never had bone problems or been told that I could. I blame Lupron and strongly believe using it as a treatment for endometriosis led to me having osteoporosis. At 27 years old, I am still trying to work with doctors to determine if there are any treatments I can do because people my age having osteoporosis is rare. Many medications women use for osteoporosis could negatively impact my bones even more because of my age. If I don’t use any treatment, I could suffer from even more fractures or bone breaks the older I get. Right now, my average T-score for my left hip is -3.6 and was -3.3 when I was first diagnosed. I have no idea when my bones became so brittle. In my case, I wish I would have never tried Lupron as now I know this is one of the many side effects of this terrible treatment for endometriosis and something I will have to deal with for the rest of my life.

There are not studies done on medications for osteoporosis in my age group because there are not enough people with the disease to study. The medications my current doctor wants me to try would be a daily injection I would give myself in the abdomen for two years. They are known to possibly cause osteosarcoma, a bone cancer. Based on my history, I don’t like my odds. At this time, I don’t know how I will try to treat osteoporosis. I am planning on looking into natural ways of treating the disease and see how that goes.

As a result from my knee injury two years ago, I had to have an arthroscopic surgery. My doctor repaired my torn meniscus and removed scar tissue. It is taking me longer to heal than I anticipated and I wonder if it is because I have osteoporosis.

If doctors use Lupron for patients, they should be required to give these patients bone scans before their first dose and do follow ups yearly. It is a known fact that Lupron should not be administered in more than 12 doses over a patient’s LIFETIME. I wonder why this is?

I hope my story helps someone make a decision that is best for their body and raise awareness about Lupron. I am not a doctor, nor do I claim to be, but I am a patient that continues to live with the outcomes of having endometriosis.

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