low testosterone

Parasites Ate My Thiamine!

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I’m a 36 year old male and I’ve probably been thiamine deficient my entire life. Everything about my body has always just been a little bit different compared to everybody else. I was always weaker, less coordinated, skinny, sickly, slow, low testosterone, always clammy to the touch, prone to mood swings, occasional hallucinations, and nightmares every single night. This was the only experience I knew and it never occurred to me that any one particular thing could be the underlying cause for this rogue’s gallery of symptoms. I took these challenges in stride, worked hard to overcome them all, and for the most part was a reasonably healthy person. However, nothing could prepare me for the nightmare experience that is dry beriberi deficiency caused by a parasitic babesia infection.

At age 33, my body began to rapidly deteriorate and present a wide variety of confusing symptoms such as intense nerve pain, aching joints, rapid temperature fluctuations, full blown panic attacks that made me want to pass out, confusion, upset stomach, nausea, vertigo, and mild hallucinations again. I went from being relatively healthy to having all of these symptoms in less than 72 hours. This was the start of a 3-year medical odyssey to discover the cause. I got very lucky with tests twice during this journey. At the 2-year mark a neurologist discovered that I was thiamine deficient. Then, at the 3-year mark, my internist discovered that I likely had a parasitic infection of babesia. This is my story.

Early Childhood Illness, Abuse, and Diet

I was born jaundiced and generally very sickly. This shouldn’t have been surprising given that my mother smoked and drank during the pregnancy. The first 3 months of my life were marked with difficulty eating and or keeping food down. In my early childhood, let’s say the ages before 7 years old, I was also prone to frequent ear infections and never grew out of wetting the bed.

My home life was also very abusive. I suffered from lots of neglect, emotional abuse, physical abuse, and thankfully only mild sexual abuse. Given the bad environment, I adopted a number of violent maladaptive behaviors and psychological issues. The night terrors came first. Then I started to hallucinate and see ghosts or demons. It was mostly visual hallucinations but every now and then they would talk or communicate without words. My extremely evangelical caregivers were not impressed by this and finally brought me to a series of psychiatrists.

I was given varying diagnoses which included Oppositional Defiant Disorder, antisocial personality disorder, borderline personality disorder, ADD, and/or schizophrenia. I was forced to take six different SSRI or antipsychotic meds before I was 12 years old. The only one I can actually remember is Tofranil (Imipramine), which I would later learn causes thiamine deficiency.

During this time I also started to experience rather severe migraines and rapidly decreasing visual clarity. My optometrist thought that he had discovered a massive tumor in my head but thankfully it was just a pseudotumor. This is another rare disorder that I did not fit any of the traditional demographics for. I would later learn that this is a symptom both of thiamine deficiency and several tick-borne illnesses. The pseudotumor was treated with bimonthly spinal taps such that I had received at least a dozen before I had turned 12. Some of them had to be anesthetic free for some reason too. After I began to get uncooperative with the spinal taps, the doctors recommended loop diuretics. This is another thing that I would later learn drains thiamine from your body.

The loop diuretics forced and unexpected change upon my system and highlighted a problem that I had never really considered before. Prior to being on diuretics I was drinking somewhere between 6 to 10 sodas per day, usually Pepsi or ginger ale. This was on top of eating a diet of mostly processed foods and desserts at every single meal. All of this was very normal to my parents and grandparents who were Boomers and Greatest Generation respectively. They didn’t grow up on high fructose corn syrup and probably didn’t have the best understanding of the danger that processed foods brought. I don’t know how much of my problem was influenced by soda, but I do know the soda definitely didn’t make things better. Looking back, this kind of diet is absolutely insane. However, it was also very common in my community and so I never thought to question what I was eating.

At age 13, I contracted pneumonia but did not have a caregiver at the time. I just had to deal with it for a couple of months. This would eventually lead to a change of custody and a massive change in medications. My father is a traditionalist and he never believed in any of the SSRIs that my mother had me take. When I moved in, I was cut off from all medication entirely including the diuretics. I stopped wetting the bed after 3 days and have never done so again. I also began to quite rapidly feel better.

Despite all of this, my teen years were comparatively more normal. I played football despite not being particularly athletic and hurt my back in a way that would catch up to me decades later. My mood leveled out and my hallucinations faded. I did have an atypical puberty. For some reason I developed gynecomastia and had no facial hair. I was always skinny and it was much harder for me to build muscle than it was for the other guys. I was also almost always cold even at extremely high temperatures. I found myself getting sick and shaking in 72F. However, weirdly I almost couldn’t feel hot at all. Little did I know then that many of these issues were probably symptoms of low testosterone which was probably caused by the low thiamine.

Insomnia, Nightmares, Zoloft, and Exceedingly Low Testosterone

I suffered from really bad insomnia in college because I was terrified of going to sleep. My nightmares were so bad that I preferred just being awake. They were also very specific and complex.

Much later I would be prescribed Zoloft for depression, which is yet another thing I can drain thiamine from your body. It worked quite well until I missed six doses due to travel. Afterwards, I could never quite get back on the medication right. I wanted to discontinue use of Zoloft but my psychiatrist insisted on doubling or tripling the dose instead. We had a disagreement and because of that I was forced to quit Zoloft cold turkey at age 29. It was a profoundly miserable experience and at the time the worst thing that I had ever felt. It was much worse than child abuse.

It took me about 6 months to stabilize from Zoloft withdrawals and then something else weird happened. I started showing symptoms of bipolar disorder but mostly mania. I was extremely aggressive, energetic, could not sleep at all, and hypersexual. I still had my intelligence about me so I noticed these changes and I knew something was wrong but didn’t know what.

I took the advice of a friend and decided to also get my testosterone levels checked. The testosterone tests revealed a level of 34ng/DL. For reference, this is off the charts low. This isn’t even 10% of what would normally be considered low. I also recognize that my symptoms of extreme energy and hyper-sexuality are kind of the opposite of what you would expect from low testosterone. Thankfully a urologist treated this with Clomid and anastrozole. Symptoms disappeared almost overnight.

The next year my L5 S1 facet joint broke and I suffered a debilitating disc slip for seemingly no reason. My only guess at this point is that perhaps I suffered an injury from football that only manifested itself later as an adult, or perhaps my body was truly failing and I didn’t know it. It took 18 months to reach full recovery, but I did achieve a near miraculous full recovery thanks to disciplined exercise.

The Bottom Falls Out

All of the aforementioned struggles combined pale in comparison to what awaited me in the winter of my 33rd year. My urologist instructed me to discontinue use of both clomiphene and anastrozole without any weaning. I think this stress on my body was the straw that broke the camel’s back.  About three months after discontinuing the use of my medication, my entire body basically went on strike within 72 hours.

It started mildly with just a feeling of being more tired than usual. Then I started having a hard time keeping my food down. Next I noticed that my joints were starting to sprain somewhat easily and I was almost always cold. The symptoms were milder than most seasonal colds and were maybe comparable to just not getting enough sleep. Then suddenly, out of nowhere, on day three I had the most intense panic attack of my life. It was the most intense fear that I have ever felt. I felt that I was imminently about to die and that these were my last moments. The fear was deep and profound as if my body was recognizing some important process just got turned off but I had no idea which one or how to fix it. This attack also immediately coincided with vertigo bad enough to force me to lay down on the floor and wait for it to pass. Thankfully, the entire event lasted less than a minute. Sadly, it would not be the last time this happened.

I would continue to have panic attacks similar in nature to this over the next few months. My mental health almost immediately crumbled despite my best efforts. It felt like the emotions of agitation, irritation, and paranoia where artificially cranked up to their maximum. My mind was moving a million of miles per hour but it was mostly some sort of deep irrational fear. To make matters worse, after the first day I was hit by not fatigue but rather full blown exhaustion that left me nearly unable to move. Then the cold spells hit.

My body started going through hypothermic episodes for no clear reason. I would drop from 97.7F (my normal) down to his low as 94.8F within a matter of minutes. I only know this because my wife is a former nurse who decided to take my temperature after I had complained enough. After seeing sub 95F temperatures her expression went from frustration to deep concern. Hypothermia was a painful experience that would also light up all the nerves in my hands and feet. It often came with mental confusion, agitation and at least a few times hallucinations. Seemingly nothing could warm me up either. No amount of blankets or clothes or heating pads made any difference. The only thing that seemed to work was a really hot bath and that would only work while I was in the hot water. These episodes were scary.

The next day, I started to experience burning feet. Both of my feet suddenly felt weak and as if they were being burned by a cold fire or perhaps an electrical burn. I had no idea of what was going on at the time but this is actually a classic symptom of dry beriberi onset. At this point everything was just way too intense and I felt like I had to seek medical care. This was the start of a very long medical odyssey.

Over the next 6 months I would bounce around between about a dozen different specialists who had various degrees of skepticism about my symptoms. A truly huge number of doctors were instantly dismissive. I got a lot of hand waves of this just being stress, or a mental disorder, or that I just need to take a vacation. The dismissal of symptoms became even more prevalent when every test I was given indicated not only that nothing was wrong but that my blood work was much healthier than normal. Eventually, I saw a pituitary endocrinologist who felt that the symptoms I was experiencing could be related to the testosterone drop. So we did a series of labs while on Clomid and then while off of Clomid to see if anything was being pushed out of balance. There was absolutely no difference between the tests, other than T levels, but I felt much better on Clomid. I felt like I had been cured after resuming Clomid for about 2-3 months. Sadly, this was a false hope. Before we move on to the next section I wanted to mention my back again. During the 6 months of dealing with exhaustion and various body pains every day, I was not able to maintain my disciplined exercise schedule. So while nothing was injured during that time, I now realize almost all of my supporting muscles were probably very weak.

A New Low

My wife convinced me to go on vacation to celebrate my recovery into good health. This might be the last vacation that I ever will ever get to take. About two days into the vacation, my left hand suddenly got De Quervain’s tenosynovitis. My right wrist started suffering from severe tendonitis about 12 hours after that. Then I started feeling a burning nerve pain in both hands. Both of my hands were limp, weak, painful, pale, and in braces within 48 hours. The old familiar feelings of exhaustion, confusion, and difficulty keeping my food down returned the day after that. I foolishly decided to try to finish the last few days of my vacation and get healthcare at home. For some reason, I didn’t connect the issues with my hands to my greater health problems and instead had assumed that perhaps I use them too hard while on vacation. I don’t know, maybe I was getting old and could not go for as long anymore? Maybe I tweaked them by lifting heavy luggage or playing the Switch on the plane? It probably didn’t help that I was getting increasingly delirious too. I made a huge mistake during the next few days of the vacation and hurt my back very badly. This is perhaps the biggest L of my entire life. This back injury never healed properly because I was suffering from thiamine deficiency and a babesia infection at the same time. My body just had no ability to heal, so I was left semi-bedridden.

Upon returning home, I once again immediately sought medical assistance wherever I could get it. Orthopedic clinics were very confused with my hands. They had symptoms similar to carpal tunnel and bad tendonitis, however no MRI or x-ray would ever show even mild versions of such things. My nerve conduction studies were also very normal, which is surprising. Most of the doctors once again recommended mental help but were willing to sign me up for physical therapy to see if that made a difference. I did physical therapy for about a year and never got consistent results. I did sometimes get stronger but that strength was easily lost if not maintained. Any minor injury could set me back for months. I felt like my joints just wouldn’t heal.

Discovering Thiamine Deficiency

I continued to push forward and request more tests from more new specialists to try to figure out what in the world was going wrong with me. I’m going to be honest with you, I was terrified. I had no clue what was going wrong and could tell that none of my doctors did either. After nearly a year of begging doctors for various tests that revealed nothing, I finally gave up and accepted that I was crazy. The first step in this process is to get evaluated by a psychiatrist. I’m thankful every day that I went to see a truly S-tier psychiatrist who sincerely listened to my story. My psychiatrist was not convinced that my problem was a traditional mental disorder. He said that I had some very abnormal labs with my testosterone levels that could not be faked even with the most severe of mental disorders. So he recommended that I see several other specialists including a neurologist before he was willing to move forward with any kind of diagnosis of his own.

The neurologist I saw was equally helpful. He actually believed the symptoms that I described and believed that while I was stressed, I wasn’t mentally ill. The neurologist told me he believes I have a neurological problem but he doesn’t know which one. He put me on an ultra-priority referral to the best neurology clinic in the state and ordered 15 different very rare and unusual labs. He told me that my problem was probably weird and that the specialist he was referring to would probably want at least some of these labs already done. All of the results were perfectly normal except… my thiamine levels were low. This neurologist actually called me about 30 minutes after the lab results came back to tell me to go buy thiamine supplements and take them immediately. I felt a tremendous improvement in all areas within 24 hours of starting supplementation. At the time, I immediately knew that we had found the thing that was causing me all this suffering. Or at least I thought I did. As it would turn out, there was one more surprise in store for my medical journey.

Something Still Wasn’t Right

Now knowing my issue, I immediately researched everything I could about thiamine deficiency and reached out to the handful of experts on planet Earth that exist for this rare disorder. That’s how I got in touch with Dr. Chandler Marrs who not only runs this website but was also able to give me a lot of helpful advice. The next year of my life was basically me thinking I was right around the corner from getting cured now that we discovered I had a thiamine deficiency. There was also some element to trying to figure out why I was thiamine deficient because I didn’t meet any risk factor or demographic for it. During this time I have come to believe that my family possesses genes that aren’t as good at processing thiamine as normal. I think that for almost my entire life I was dipping in and out of mild thiamine deficiency and had no idea it was happening.

I spent a year trying to recover to normalcy but failed spectacularly. I couldn’t seem to quite shake all of the symptoms despite the thiamine supplementation. I was probably just too happy that the constant 24/7 burning hands finally ended. I spent pretty much all of the previous year feeling like my hands were burning and almost no medications would make it stop. It was really difficult to sleep or focus when you feel like you’re on fire. Being relieved from this probably skewed my perspective away from having any more objective take on my situation. While my symptoms were lesser, they were still inconsistently present.

New symptoms began to appear too. I noticed that all of my joints were even weaker. It felt like my connective tissue was falling apart and my muscles were all so atrophied. I had assumed this was from the inactivity due to exhaustion in the previous year or just some lingering nerve damage. However, another year of healthy living, proper supplementation, and all sorts of physical therapy made no difference to my situation. In several ways my joints actually got worse and weaker. It became incredibly easy for me to sprain ankles, strained my hands, get tendonitis in my wrist, or even experience a lot of pain in my knees and hips. This pain continued to spread until it was affecting basically every single joint in my entire body. At this point I returned to seeking medical care and was pretty uniformly told that I should be instead seeking mental health care.

Stubbornly, I decided to work only with the handful of doctors that believed I did not have a mental disorder. I also begged them to give me a wide variety of unusual tests for rare disorders. I knew that whatever this problem was, it had to be unusual. One of these random tests actually popped positive for something interesting. I was positive for a babesia and bartonella infection but did not have Lyme or any other tick-borne illnesses.

Parasites

Babesia aren’t even bacteria. What I had was technically a protozoan infection. These ultra-tiny parasites live inside your red blood cells. They have also been known to take up residence and intracellular spaces, joints, and sometimes nerve tissue. It was extremely difficult to find even a single infectious disease doctor was willing to take me as a patient. Most of them did not feel qualified to treat this particular type of infectious disease. I did find one however and she did believe that my symptoms were within the ballpark of a babesia infection. She believed the bartonella may have been a false positive. Unfortunately we were not able to confirm this diagnosis with repeated testing with local labs, though it should be noted that both babesia and bartonella are extremely difficult to test for. We decided to move ahead with treatment for babesia given that the treatment was just a round of antibiotics that had relatively low risk. There was definitely some risk given that I was already thiamine deficient. Many of you reading this website or article are probably already thiamine deficient so in case you didn’t know, antibiotics tend to really disrupt thiamine absorption and make beriberi worse. However, I decided I certainly wasn’t going to be getting any better as long as these parasites were in me. So I worked with several doctors including Dr. Marrs, to come up with a plan to protect my gut biome as much as possible during this process.

The babesia treatments were almost immediately successful. Within 48 Hours of starting antibiotics, I already felt much better. About 3 days after taking antibiotics, I stopped having nightmares entirely. I used to have nightmares every single night and suddenly they just stopped. After completing the entire course of antibiotics, I overall felt much healthier. My body was still weak, my muscles still atrophied, and my joints still in pain, however they suddenly felt as if they were improving and also recovery times were much faster. The biggest improvement is that my recovery times are now probably about two or three times what a normal person’s would be for the same activities. Even that is probably still 10 or 20 times better than where I was before. My tolerance to cold got better and the last of my lingering minor mood swings disappeared. I started feeling good enough to resume physical therapy and this time I think it’s actually working. The strength in both my hands, my knees, and my back are slowly improving this time. I fear that a 100% recovery is probably impossible from this much damage. However, I would be happy to hit about 80% again.

Parasites Probably Ate My Thiamine

So how did this happen? That’s a question I ask myself almost every single day now. Babesia is about as well researched as thiamine deficiency which means that there’s very little research about either of them. They barely even have standard treatment protocols. However, in my deep readings I did discover that a babesia infection can cause low testosterone and thiamine deficiency. My peasant non-doctor understanding is that babesia and other tick-borne illnesses will actually sap thiamine directly out of your bloodstream. They can also cause SIBO, which is known to lower thiamine absorption in the stomach as well. This is of course on top of damaging joints and causing a great deal of mental stress, which increases my thiamine need. All of these are ultimately systemic problems that can disrupt not just thiamine absorption. I now know that my family absorbs thiamine worse than other people. So my assumption is that I have probably been somewhat deficient my entire life and this babesia infection was the perfect straw to break the camel’s back and send me into full blown thiamine deficiency. It’s also entirely possible that given my incredibly low income and frequently outdoors upbringing, that I had contracted babesia as a child and had carried that infection with me my entire life. Maybe even my body got used to it? It’s also theoretically possible that it could have been congenital. I really don’t know how I contracted a super rare tick-borne illness but I do know that it was the perfect thing to sap the tiny bit of remaining thiamine of my body.

Between the two, I think the thiamine deficiency caused much more severe problems for me than the babesia infection. Moving forward, I’m just going to keep supplementing, testing to make sure the infection doesn’t return, sticking with physical therapy, and hope that it all works out in the long run. I’m 36 years old now which isn’t young but in the medical field I’m told it’s young enough to have a much better chance of recovery than most patients. It is frustrating to know that this kind of recovery will take years instead of months. Thankfully, I still have plenty of discipline to keep pushing through.

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Unexplained New Onset Fatigue and Other Symptoms

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For almost a year, I have suffered from fatigue, morning sinus and congestion problems, and other health issues including type 2 diabetes, insomnia, and depression. For the last four months, I have been dealing with a skin rash on my legs, arms, stomach, and small outbreaks on my face. I have been misdiagnosed by my primary doctor and two different naturopaths. They told me that it was fungal and I was given anti-fungals. I don’t remember the name. After a second visit to a dermatologist, the doctor did a scraping and a biopsy and told me that it definitely wasn’t fungal. They are going to do some patch tests this week. I have had to keep my mental outlook positive because, for the last year, the doctors have had no answers.

My primary has told me that I am an anomaly. Great! But still no answers. She has done a plethora of blood tests, two or three CAT scans, and other imagery. The only blood test that was a little high was my white blood cell count. My iron is high because of my testosterone injections. I was initially told that I had Lyme’s disease but my blood tests found that to be negative. Then I was told that I have Epstein Barr, but my blood tests were negative for that also. I am used to an active lifestyle, lifting weights, hiking, backpacking, fishing, martial arts, etc., but, for the last year, I have been extremely low energy with significant fatigue. I will sleep 8 hours, get up for a while, and just feel like going back to bed. I would like my life back!

Early Thyroid Problems

I take levothyroxine because my thyroid was low about 20 years ago. They did a scan of my thyroid and told me that my thyroid was quite small, probably due to my Graves’ disease treatment when I was 16 years old. I was told that I was close to death at that time. I remember some of the unpleasant things I went through at that time. They gave me a drink called a “nuclear cocktail” and then, for the next 4+ years, they treated me with propylthiouracil. I fought my way through this disease and started lifting weights and working out when I felt better. I was about 16 years old at the time. I continued to work out and have been athletic all of my life.

Back Pain and Spine Curvature

After years of athletics that included snow skiing and martial arts, I began to develop significant back pain. After an MRI in 2004, the doctors asked if I had polio. The test showed curvature of the spine, a bulging disc, and some areas of bone on bone.  At that point, I was prescribed oxycodone and have been on it ever since. Despite the back issues, I have functioned fine until this last year when a variety of new symptoms manifested, including unremitting fatigue. I have had a big change in my energy levels, sex drive, and the pain issues have increased and so it is a struggle to lift weights. My hands, shoulders, spine, and feet have increased pain. I have always been very self-motivated, but this last year has been very tough. The doctors say that I have osteoarthritis and fibromyalgia. I don’t know anymore.

Maybe Thiamine for the Fatigue?

Recently, I listened to Elliot Overton’s interview with Dr. Marrs about thiamine and found many of my symptoms were possibly linked to thiamine deficiency. I have taken a myriad of nutritional supplements over the years. They are listed below. All to no avail. I have also started taking thiamine, but the jury is not out on that yet. It has been pretty expensive with all the doctor appointments and nutritional/medical expenses.

There is a lot more that I have probably missed, but I wanted to keep this to a short story, not a novel. What am I missing with my health issues? The fatigue is unending. The doctors have no advice and consider me an anomaly. Am I? Or are we simply missing something?

Current Medications

  • Levothyroxine-125mcg – for approximately 29 years.
  • Sertraline-50 mg – last two years
  • Lisinopril-10mg – last year and a half
  • Metformin-750mg – last two years
  • Hydroxyzine-50 mg – at bedtime for sleep issues for the last year and a half
  • Oxycodone-10 mg up to 4 times a day since 2004. I see my spine doc every 2 months. I have some spine damage and joint issues from the martial arts and various other sports.
  • Dicloflenac- 50 mg (Rarely use)
  • Lunesta-3 mg (1 at night) – this was given to wean me off of clonazepam.
  • Testosterone-.5 ml – injection every 2 weeks – for low testosterone
  • Aspirin-81 mg-one a day for thick blood due to the testosterone replacement therapy
  • Kenalog injection for rash. I have had only one injection and the dermatologist told me that it would be good for a month.
  • Triamcinolone cream to use on the various rash sites.

Current Supplements

  • Vitamin D3-10,000 IU a day (Kirkland brand)
  • B12-5000 mcg sublingual 1 a day
  • Saw Palmetto-450 mg, 1 a day (ZHOU brand)
  • Ceylon Cinnamon-1200 mg, 1 a day (Spring Valley brand)
  • Garlic-2 capsules, 1 a day (Kyolic brand)
  • Niacinamide-500 mg, 2 times a day (Nutricost)
  • Liposomal Vitamin C-1400 mg, twice a day
  • Benfotiamine-300 mg, twice a day

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 article was published originally on February 19, 2020.

Hormone Treatment During Pregnancy and Gender Variance in Later Life

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For as long as I can remember, I’ve always had an unusual partially feminine gender identity, but until recently I never consciously acknowledged it. Then, a couple of years ago I realised that, although at a conscious level I identify as male, my body language, my pattern of arousal and orgasm, and my instinctive social behaviour are all very much more like what you’d typically see in a woman rather than a man. In addition, I appear to be suffering from secondary hypogonadism (i.e. my brain regions that control hormones aren’t working correctly), and I have a “eunuchoid” body structure, which indicates that my testosterone production has been below normal all my life.

Is Being Transgendered Just One of Those Things?

Although it never became my career, as a student I excelled at both chemistry and biology, and I’ve retained an amateur interest in the sciences ever since. Most people seem to assume that being transgendered is “just one of those things”, but I resolved to use that background in science to try and figure out whether there was an actual physical explanation for it. Accordingly, I tried to discover as much as I could about sexual development in the unborn child, and the kinds of things that can go wrong with that process.

Sexual Blueprints

Our sex-determining chromosome, the Y chromosome, is far smaller than any of our other chromosome and only has a few dozen functional genes on it. Basically all the Y chromosome does is to tell your undifferentiated gonads to turn into testicles (without it they’ll turn into ovaries instead). All of the genetic blueprints for actually building a male or female body are located elsewhere in your genome, so everyone has the full set of instructions for both sexes.

By default the “female” instructions are what get followed during fetal development, but if there’s testosterone present, the “male” instructions will be followed instead. Ordinarily this system works quite well, and you’ll develop as one sex throughout the pregnancy (which one depending on whether you have testicles churning out testosterone or not).

An Endocrine Disruptor

What appears to have happened in my case is that the pregnancy was no different from that of any other male baby, except that partway through the second trimester, something catastrophic happened that severely disrupted my endocrine system, so that for a few weeks I wasn’t producing any testosterone. Following that, my endocrine system recovered and everything went back to normal for the remainder of the pregnancy. The result is that I was built using the instructions for male development for most of the pregnancy, but during the time I wasn’t producing any testosterone, the instructions for female development were followed instead. That seems to have happened after all my physical development had completed, but very early in the process of wiring up my brain’s permanent structure (all the things that are affected seem to be associated with evolutionarily ancient parts of the brain, which points to the period of female development having happened early on in the process of wiring up my brain).

Based on when genital development takes place and when the process of building the permanent structure of the brain begins, I was able to work out that whatever it was must have happened somewhere around 16 or 17 weeks after conception, at or very soon after the time my mother would have first felt me moving inside her. Knowing what she was like when I was younger, my immediate thought was that she must have had a depressive episode, decided that she couldn’t cope with another child so soon after the first, and taken an overdose of something in an attempt to bring on a miscarriage.

A DIY Abortion That Didn’t Take

A bit of snooping on maternity forums soon revealed that the first thing most unhappily pregnant women contemplating a DIY abortion seem to think of is an overdose of contraceptive pills. I was able to subsequently confirm that my parents were using birth control pills for contraception at the time – the high dosage first generation ones. There was also something otherwise completely inexplicable that happened later in my childhood, which makes me think she must have been hiding a guilty secret along those lines.

My mother passed away in 2010, and in a way I’m glad that happened before I discovered any of this, because I would have been angry with her and she didn’t deserve that. She did her best to be a good mother to me and to all her other children, and I don’t hold her responsible in any way for what happened. I can’t blame my father either. He lost 3 brothers during his childhood and then his first wife died on their honeymoon, so I can understand why he became so obsessed with the idea of having a large family.

Brain Sexual Identity and DES

One further thing that made me think an exposure to artificial female hormones is the cause of my conditions was reading in the book “Brain Sex” about a pattern of behaviour commonly shown by teenage boys whose mothers were given treatment with a drug called diethylstilbestrol or DES in an attempt to prevent miscarriage . The boys in the study were typically very shy, socially withdrawn, had low self esteem, were regarded as sissies, bullied, ostracised by their peers, with no ability to fight back when attacked and no interest in sport. The authors of the book described it as “feminized behaviour”, and my teenage years matched it so closely it could have come straight out of my school report!

The main hormonal component of the contraceptive pills my parents were using is norethisterone acetate, a progestin, whereas DES is an estrogen. What estrogens and progestins both have in common is that they are female hormone derivatives, and are basically completely incompatible with masculinity. Both types of hormone have the ability to disrupt testicular hormone production at quite modest doses, well below those commonly used for medical treatment for women.

DES was for many years used to chemically castrate men suffering from hormone-sensitive prostate cancer, while progestins are commonly used for chemical castration of sex offenders and transsexuals. If they also suppress testosterone in a male fetus, then any use of them during a pregnancy of a male child carries a risk of creating a baby who developed as the wrong sex for part of the pregnancy. This is what I think happened to me, and to the DES sons.

For nearly two years I’ve been trying to find out as much as I can about DES sons, reading their personal accounts of how they’ve been affected and chatting with them online. Among the ones I’ve had contact with or whose life stories I’ve read, there seems to be a very high incidence of both intersex-related genital abnormalities and gender dysphoria. As a group they seem to commonly experience many of the same problems I have (a genital abnormality, feminized behaviour as a teenager, low testosterone and problems with hormones, gender variance). The key difference is that on the whole they seem to be far more psychologically female than I am (which is exactly what you’d expect, considering that their exposure was for a much larger part of the pregnancy than mine). I think it’s quite likely that for most of them, their testosterone production was completely suppressed and they were developing as female throughout the time their mothers were on the drug!

DES and all other estrogens were withdrawn from use in pregnancy 30 years ago, however, treatments for prevention of miscarriage, based on progestins rather than estrogens, continue to be used to the present day. One of these involves a progestin called hydroxyprogesterone caproate, given as a weekly intramuscular injection of either 250mg or 500mg, starting 16 weeks into the pregnancy – just around the time I think my hormone exposure occurred. The difference is that this treatment continues to be administered for the remainder of the pregnancy. If this drug does suppress testosterone production in a male fetus, then it’s hard to imagine a treatment better suited to creating as baby with a male body but a female brain! I’m fairly sure that if you gave an adult man 250mg per week of this drug, his testosterone production would be seriously impaired. Why wouldn’t the same happen to a male fetus?

Females Affected Too

In this article, I’ve only been looking at the effects of artificial sex hormones on a male fetus, however it’s likely that, under the right circumstances, a female fetus could be affected too. This could happen if the external hormone mimics the action of testosterone (e.g.progestin induced virilization), or if it disrupts endogenous hormone production in a way that causes excessive androgens to be produced (hyperandrogenism).

Postscript: This article was published previously September 2013. 

Hypogonadotropic Hypogonadism, a GnRH Pump, and Craniocervical Instability

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Early Hormone Issues

In my mid 20’s, as a married woman I wanted to become pregnant. I went off birth control pills and discovered, once off birth control, I did not have periods. It became clear I would have trouble conceiving. It was initially thought maybe I had PCOS since I was a bit overweight. Progesterone challenge yielded scant to no vaginal bleeding. I ultimately ended up at Mass General in Boston for a clinic trial using pulsatile GnRH for anovulatory infertility.

As a part of the trial, my LH levels were measured multiple times an hour for over 10 hours. The testing revealed that my LH was flat lined. I was a candidate for the GnRH pump. Once one became available, I flew back to Boston. An ultrasound of my uterus revealed a prepubescent sized uterus and the GnRH pump was inserted. Within a week, I was pregnant. I was told I had hypogonadotropic hypogonadism. Labs were also performed on my two sisters and my mom. It was determined that my condition was a result of a head injury that I received in a motor vehicle collision in 1995, at the age of 16.

I felt phenomenal when pregnant, what I feel like ‘normal people’ feel like all the time. I had a good amount of energy and mental clarity. The pregnancy was uneventful. Postpartum, I developed severe vaginal dryness and atrophy of the tissues. I had diffuse muscle and joint pain, numbness particularly in my hands and a lot of achiness. Within a few months, I was having difficulty climbing stairs. My legs would shake. I eventually found myself at a functional medicine doctor. All of my hormone levels were low. FSH, LH were always low. In addition, I had low progesterone, nonexistent estradiol and testosterone levels. IGF-1 was 11, the lowest he had ever seen. I started Semorelin 0.3 subcutaneous nightly, along with estrogen, testosterone and progesterone, and thyroid replacement. Over time, I began to feel more ‘normal’.

Craniocervical Problems

As a young person, I always recall having lower amounts of energy than others around me, required more sleep and poor exercise tolerance. Interestingly I have never been able to blow dry my hair or hold my arms above my head for any period of time due to fatiguing of my arms.

In December of 2019 through March 2020, I developed tightness of the right side of my body which developed into difficulties with balance, and right sided weakness, dysphonia, dysphagia with liquids, shortness of breath, and urinary incontinence. An area was found on my cervical spinal cord and it was felt to be the beginnings of MS. I was admitted for IV steroids without significant change. I strongly felt my symptoms were positionally worse when I slept prone with my neck extended. An initial neurologist, I saw felt I had cervical stenosis and when the neck extended I was pinching my cord due to lack of space in cervical canal. After progressive worsening for 2-3 months, I underwent C4-7 fusion for cervical myelopathy and my symptoms improved dramatically but began to return 6-8 weeks after surgery albeit not as severe. By the fall of 2020, I was experiencing worsening fatigability, shortness of breath and voice fatigue worse after being upright for a period of time I would have to lay down between seeing clients. If I wasn’t working for myself I would’ve had to stop working. Symptoms stabilized a bit once I returned to wearing a hard cervical collar nightly.

In January of 2021, I saw a specialist in craniocervical instability. He reviewed my flexion/extension MRI images and felt C3-4 was a problem, he called it a rotary disc herniation and a slight Chiari malformation. I returned to my surgeon, who on March 6, 2021 performed C3-4 fusion and revised C4-5 and C5-6 due to lack of subarachnoid space or residual stenosis. Post-surgery, I could finally lift my arms above my head, my balance was restored and my reflexes returned to normal. I felt like I finally had my life back. I followed a low inflammation diet because he had told my mom there was a lot of scar tissue. My right leg was not tight or heavy when I woke up in the morning. No numbness to my hands. The deformity I had developed in my right hand had resolved. Unfortunately, just over 8 weeks after surgery some of symptoms began to return. I am back to wearing a cervical collar every night, provided I do this, my balance is better. I still occasionally have muscle fasciculations in quads and glutes. Hyperreflexia and Hoffman’s sign had returned.

Heart Rhythm Irregularities, Hypermobility Disorder, and Vitamin Deficiencies

Incidentally found on pre op electrocardiogram was an interventricular cardiac conduction delay. I was cleared for my second cervical fusion by cardiology. This had developed between March 2020 and March 2021.

During my work up the doctor diagnosed me with hypermobility spectrum disorder and ordered a micronutrient test which was telling. Over the years, every vitamin I have been tested for has been low. So I have taken a multivitamin, B12 and vitamin D for years, but it doesn’t appear that supplementation has helped. Intrinsic factor was high normal at 17. The micronutrient tests showed abnormally low vitamin K1, K2, zinc, iron, and selenium as well as low serine and asparagine. While many of the vitamins tested within the reference ranges, most were at lower end and below average.

I have an identical twin sister and she has helped me along this journey. Given our family history she worries about her own health and our future. She found the Hormones Matter website and began investigating thiamine issues and I began investigating mitochondrial deficiencies.

I uploaded my Ancestry DNA data to Genetic Genie and found homozygous pattern for mitochondrial disease Allele GG

Gene: MT-ND4
Variant: m.11467A>G
rsIDrs2853493

Livewello results for mitochondrial dysfunction revealed three sets of homozygous SNPs.

  • Rs1142530. TT
  • Rs 11666067. AA
  • Rs 1051266. CC

Results of Mitoswab testing: citrate synthase 15.58 (128%); RC I 4.8 (71%); RC IV 0.585 (189%); RC II 0.218 (113%); RC II + III 0.041 (45%).

I have an appointment pending at Children’s Hospital of Philadelphia for October for their Mitochondrial Medicine Clinic.

Diet and Supplements

I am currently on Thorne multivitamin elite, allithiamine – 50mg two daily, one carnitine 500mg two times per day. Coq10 2 times a day, Thorne 3-k complete one per day.

My diet is good and always has been. I eat more fruits than vegetables; more lean meat than not, rarely if ever a soda. I have a sweet tooth and eat some carbs, but keep it under control. Alcohol max of 3-5 drinks per week.

Weight has always been an issue. I am currently 210lbs at 5’8”. My energy level is low and I feel the need to nap daily.

Family History

  • Maternal grandmother developed ALS at 72 and died the same year she was diagnosed.
  • Dad died at 52, insulin dependent diabetes mellitus, depression, headaches, enlarged heart.
  • Paternal uncle died at 53, non-insulin dependent diabetes mellitus. He had poor health his entire life.
  • Paternal aunt died at 60 after greater than 10 year battle with Parkinson’s disease.
  • Paternal aunt died at 70 after ten year battle with immobility and memory loss, Alzheimer’s with ataxia. She also had IDDM, as did all three of her children by the age 12.
  • Niece and nephew have a MODY 2 genetic defect, which is a form of maturity onset diabetes of the young causing elevated HbA1c.
  • My eldest sister age 44, has always suffered with severe headaches, severe insomnia (melatonin level 0), hip and back issues. Multiple back surgeries and hip replacement at 39. She started on good multivitamin and saw significant improvement in muscle pain.
  • Twin sister has easy fatigability, shortness of breath, headaches and jaw pain. Noticed improvement with Thorne’s multivitamin elite, Neurochondria, and magnesium.

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Opioids, Chronic Pain and Low Testosterone in Men

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Does your guy suffer from chronic pain? Does he use opioid based pain-killers on a regular basis? Then he may also have low testosterone. Low testosterone or as the advertisers call it, Low T, is associated with a range of health issues beyond just reduced libido or sex drive. His low testosterone could be an important factor in his health and recovery.

Testosterone influences, muscle mass, bone density, cognition and memory, depression, and even insulin production. Many men with low testosterone are at risk of osteopenia and osteoporosis. Lower testosterone or hypogonadism has even been associated with an increased risk of heart attack. That means, in addition to worrying about managing chronic pain, the risks associated with long term opioid use, you and your guy now also should be aware of the critical hormone changes taking place. It is possible these hormone changes are compounding an already difficult recovery.

The study, published in the Clinical Journal of Pain, found that 53% of the men tested who were using daily opioids had low testosterone. Moreover, 74% of men using long-acting or time-released opioid pain killers had low testosterone compared to only 34% of those using short acting opioid pain-killers. Interestingly, the morphine-standardized equivalent dose (MSE),  a measure of how much pain-killer is circulating in the bloodstream, was not associated with the testosterone levels. This means that higher dose pain killers were not tied to lower testosterone, only the duration of the medication action was associated with the hormone change.  Long-acting (time release) pain-killers were linked to lower testosterone while short-acting pills were not.

 Long-acting Opioids

  • Buprenorphine
  • Fentanyl
  • Methadone
  • Morphine CR
  • Oxycodone

Short-acting Opioids

  • Oxycodone IR
  • Hydrocodone

If your guy is using is opioid pain-killers to manage a chronic pain from injury, have his doctor check his testosterone levels too.

Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

Should your Guy be Taking Testosterone

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Testosterone prescriptions for men have increased almost 4-fold over the last decade. It’s marketed to treat everything from low libido, depression and middle-aged weight gain to improved cardiovascular health. Is it safe? Does it work? Should your guy be taking testosterone?  Here is the research.

Testosterone Treatment

Trials in older men with low testosterone levels have shown beneficial effects, such as increased strength, muscle mass, bone mineral density, insulin sensitivity, and libido. However, in elderly men, the treatment effects were short-lived (<6 months).

An observational study of over a 1000 male veterans aged >40 years compared mortality rates between those treated with testosterone and a group of controls with low testosterone. The treatment group showed almost half the rate of mortality, all causes, and lived longer compared to the control group.  Other research shows that testosterone replacement lowers HDL levels but only in younger men taking supra-physiological doses (anabolic steroids).

In contrast, a recent research trial with frail, elderly men (>65 years of age) was stopped early due to a greater occurrence of cardiovascular-related events in testosterone treated men.

Conclusion: The Jury is Still Out

Although some testosterone treatment trials report positive results, there is ongoing concern about the risk of incident prostate cancer or prostate cancer mortality because studies have not been large enough or long enough to address this. The report of adverse cardiovascular events associated with treatment highlights the need for further data on the risks and benefits of testosterone treatment in older men, particularly given the large numbers of older men who are prescribed testosterone. And data supporting the libido boost is still out with only some studies reporting benefits.  Should your guy be taking testosterone- the jury is still out.