dysphagia

Precocious Puberty: Are There Options Beyond Supprelin and Other Drugs?

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Precocious Puberty

My daughter was recently diagnosed with precocious puberty and advancing bone age despite her short stature. At 6 years old, the endocrinologist estimated her bone age to be 11 years. She began her period in August, at age 8, weighing 63 lbs and standing only 4’4 tall. Our physician recommend the GnRH agonist Supprelin. After researching the side effects, I am concerned and have decided against using this drug. I am at loss, however, as to what to do. I am hoping someone with experience with precocious puberty will read this and offer suggestions beyond the drugs. Below is her health history.

A Baby Girl is Born

In January 2012, I gave birth to our beautiful and long awaited baby girl. My pregnancy was uneventful. I had a vaginal birth delivery but developed a complication right after her birth. I continued to bleed and required a blood transfusion the next day. During the transfusion, I developed a severe allergy to the plasma, and was given an Epi shot.

My daughter was 6lbs 5 oz at birth and healthy, however because I had to be taken to the OR to be stitched up and was given narcotics, I could not breastfeed and she was put on Similac. I continued to give her Similac, as I did not have a good enough output of breastmilk and stopped breastfeeding at two months. At the hospital they said her bilirubin level was a bit low and she went under some light for about half a day or one day. She was a very petite baby. At one month, she was 8lbs. The pediatrician did not seem concerned as I am also very petite.

Early Feeding Issues: Oral Dysphagia

In addition to the formula, I started Gerber oatmeal at around 4 or 5 months and she liked to have that cereal. At around 9 months, however, when I tried to introduce stage 3 foods, she started throwing up, as she tried to swallow the tiny pieces of food without chewing it. She refused to eat crackers and other food that required chewing. We continued to offer her pureed food. She also could not drink from a sippy cup, so after every meal I used to give her water in a spoon. The doctor said she may just need some time and to continue to try and offer her solid foods.

When she was around 4 years of age, we started on feeding therapy. The doctors said she has oral dysphagia and requires therapy. After about 6 months of therapy, she improved slightly, however still refused food that required chewing. Her diet at this time was mainly milk, cream of wheat, cheese, yoghurt, pasta, sweet potato puree, spinach, carrots and eggs. The doctor recommended Pediasure, so that was added to her diet as well.

We took her for feeding therapy again when she was 6 years old and the therapist told us that she needed to stop drinking milk from a bottle as it could impair her speech. When we switched to offering milk in a cup, she refused to drink milk. I was told not to force her to eat, as the therapist indicated that she appears anxious around food. Her diet expanded around the age of 7. She ate rice, quinoa, bread, lentils, more vegetables, and salmon. Occasionally she would eat chicken and beef it was very soft. The only food she eats from outside is the occasional cheese pizza or mac and cheese. She doesn’t like sweets, so no cookies, cake, candy, ice cream, sodas, juice etc. She also doesn’t really like any fast food. The only fruit she eats is bananas. I try to offer a banana at least once a day.

She hardly gets hungry, she never asks for food or water, which was concerning to me and I brought it up to the therapists. They did a physical exam and said she was okay. They said to increase fiber foods, and prescribed a laxative.

She continues to take a long time to eat her meals, on average dinner is around 2 hours. The lunch break in school is not enough for her to finish the sandwich (almond butter and jelly) that I send so most days when she comes home around 4.30PM she has hardly had any lunch. She finishes her sandwich at home, while I scramble to get her dinner ready, which she finishes quite late and just in time for bed.

At around age 7-8, she started eating bacon and hot dogs,. She doesn’t really like bacon that much but seems to like hot dogs.

Vaccines, Medication, and Medical History

My daughter is up to date on all her vaccines and takes the yearly flu shot. For a brief period in time, when she was 4 years old, she had asthma that was brought on by a cold and was prescribed Albuterol and Qvar. Her asthma cleared up very soon though and only appeared when she got sick with a cold, but that was also just a few times. Since then she has had many colds and not required any asthma medication. When she was 7 years old, she underwent a small procedure to remove a congenital nevus on her tummy that the doctor was a bit concerned about, however it was benign. She sometimes complains of stomach pains but I believe this is because of constipation. She doesn’t drink water unless I make her drink water.

Physical Activity

My daughter is not very physically active. I have to coax her to leave the house and that’s the only time she throws a tantrum. She prefers to play with her toys or video games and watch TV. She goes for swimming once a week, and in 2020 I enrolled her in yoga classes and circuit training classes but then COVID hit, so she could not attend many sessions. In school she has a PE class and does play with the other kids in the playground.

Early Signs of Precocious Puberty

Around the age of 6 years old, I noticed breast buds poking through her shirt, I convinced myself that I was seeing things but took her to the pediatrician a few months later and she ordered a bone X-ray to determine if this was ‘early normal’ puberty. I got a call from the doctor indicating that her bone age was 11 and that she was referring us to a pediatric endocrinologist. The endocrinologist confirmed that bone age was 11 because of something that looked like a white circle on the X-ray near the thumb. She said that only appears at age 11. She also said that based on physical appearance that she may be at a tanner stage iii.

She wanted us to start on the supprelin implant right away, my daughter was then 7 years old. I did some research and saw that GnRH agonists have a lot of side effects and are used to treat cancer patients. My husband and I decided not to treat, as my daughter, even though she was aware that she was maturing, didn’t seemed bothered by it and was always happy and joyful. The thought of her having any of the side effects was too much to bear and we were happy with our decision.

I tried to look at natural ways to perhaps stop it and I found out that cows milk is loaded with hormones, so then I switched her to almond milk (in her daily cream of wheat) for about a year, but at the start of this year, I switched back to cow’s milk as she seemed to be losing weight and since she doesn’t eat well at school I didn’t want her to miss out on the calories.

Looking back, I think we were in denial because I was an early bloomer as well and I got my first period at 10.5 years old. I had early breast development as well but don’t remember the exact age my breast development started. I was around a B cup at the time of menarche (bigger than my daughter for sure). I was never tested for precocious puberty. I was a chubby kid and do remember developing earlier than my classmates. I don’t remember hair growth, but it was definitely present at the time of menarche. I also remember my mom telling her friends that I was the biggest kid in class, but that I suddenly stopped growing. I thought my daughter would be just like me.

Menarche At 8 Years Old

My daughter got her first period in August, at age 8, weighing 63 lbs and only 4’4 tall. She handled it well and this did not seem to bother her at all, however by the 3rd day she wanted to know when it will stop. Her cycle lasted four days.

It has been quite a shock to me because I thought she’d get her period at 10 like me. All I’ve been doing since is Googling, and Facebook messaging anyone who may have gone through something similar with precocious puberty. Almost every article I read indicates that there is not much growth left and that growth plates close at bone age 14 or 15. In my daughter’s case I’m guessing her bone age is 13, given it was 5 years advanced when she was 6. I suspect her tanner stage looks to be around IV based on physical appearance. I don’t know how tall my daughter will end up at. She is her usual happy and cheerful self, but I am a wreck. I am only 4’11.5  and my husband is 5’7.5 so I know she may not be that tall but I’m hoping she can at least reach 4’7 or 4’8.  My daughter is otherwise healthy.

Potentially Relevant Family Medical History

I have a history of ovarian dermoid cysts. I have had two surgeries; one in 2005, the other in 2017. I have only been pregnant once. Last year I was diagnosed with pre-diabetes and I’ve been trying to clean up my diet. I also have fatty liver (liver function tests are normal) and gallbladder stones (I’m 37). I had to see a hematologist prior to my dermoid cyst surgery in 2017 because the doctor was worried that I might have a bleeding condition. The hematologist, after a battery of tests, said he thinks I have some kind of bleeding issue but that it’s not severe. He did prescribe iron supplements for 6 months. I was also found to be deficient in vitamin D and I was prescribed 50000IU of Vitamin D2 once a week. I think I had to take this for about 2 months.

My husband’s sister started her period at age 9 and is currently 5’3 tall. I am unsure if this was a case of precocious puberty, as she was not shown to a doctor either. She does remember being taller than the rest of her peers in school. She was overweight as a kid.

Early puberty is somewhat common in the South Asian region that we originate from. I remember quite a few of my friends getting their periods at 9 or 10. No one ever goes to the doctor to get checked, so this bone age concept is new to me and I am very worried on how it would impact final height.

Where We Are Now

I’m on the lookout for some nutritional supplements that would help her grow, but not cause further acceleration that could cause her growth plates to close as I feel I failed her already and do not want to do anything that could impact her final height negatively. I read that physical activity can increase growth hormone, which I really did not know before this, so I now make her run outside and do some physical activity daily. I’m meeting with another endocrinologist this week to determine impacts to final height. I really don’t want to treat her with puberty blockers, but I’m worried she will end up very short and blame us for not treating. I did come across some other parents whose kids started menarche at 8 or earlier who grew around 5 – 6 inches without treatment, however their bone age was  not as advanced as our daughter’s, so I worry that she may not have that same level of growth.

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.

Image by Rudy and Peter Skitterians from Pixabay.

This article was published originally on August 17, 2020. 

Surviving and Thriving After Cerebellar Stroke

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At age 23 I attempted suicide after years of mental and physical self-destruction. Something inside of me assumed the position of thinking that life was nothing but unbearable suffering and misery; that all was lost and there was no hope or joy to be found. Looking back, the fact that I even entertained that way of thinking astounds me. I do not say this jokingly but I am fortunate that rather than dying, as was predicted, I suffered a massive stroke that affected my cerebellum. This left me unable to move, but I lived. Often, what are seemingly our darkest days are a gift. If I hadn’t lost the ability to move and continued to physically ply myself with alcohol, drugs, food, cigarettes, etc., I would have surely died incredibly quickly. If I did not have that year of immobility and inability to move my arms, I am sure I would have very quickly perished by another means, probably self-inflicted. I am grateful for all the heartache and the pain. It has made me who I am and helped me find strength. Without a cerebellar brain injury and the hard work it has taken to face it, I wouldn’t be alive to tell my story. That sounds odd, but trust that it is true. I pray you may find my story inspirational.

Every Story Has a Beginning

I lay comatose in my still hospital room with the sound of whirring machines and regular beeps from hospital equipment the only noise in otherwise silence. Incessant beeps from the EKG monitoring my weakened heart broke the thick stillness that was my current home. I resembled Frankenstein’s monster with all the wires and IVs protruding from veins and arteries throughout my emaciated, anorexic body.  It was Thanksgiving and wearily, my grief-stricken family decided that they should possibly should possibly have some Thanksgiving dinner. My family could not travel far from my room, on the off chance I passed away and they were not on hand. The hospital cafeteria would have to do. This was hardly how they imagined this holiday turning out. The wounds left by my father’s suicide were still fresh. My family’s still beating hearts were now on display for everyone to see. Such familial tragedy was unheard outside of books and film.

So they prayed with all they could muster, which was not much; prayed that somehow, someway my completely ravaged body would miraculously pull through and actually revive itself back to life. They had little hope. The medical team had prepared them for my demise. This scenario was familiar to them. I had, to date, 5 suicide attempts and many ambulance rides, ERs. ICUs, hospitals, jails, rehabs, psychiatric wards, and treatment center stays since age fifteen. I had recently turned 23. The chances did not look altogether well that I would reach my 24th birthday. Only an act of providence would save me from my fate now.

My extended family had traveled from as far away as Pennsylvania and North Carolina to offer my mother and siblings support and to be with them while they grieved. Sweet whispers graced my ears with the hopes that, by chance, I would subconsciously receive these messages. I believe in my heart, that I did. I believe that everyone’s prayers came to fruition. I believe in miracles. There is no other way to explain what was about to bring shock to everyone involved. As they prayed for some sort of miracle, on a bleak Thanksgiving, in the cafeteria of a random hospital in Winchester, Virginia, all prayers were answered. I woke up.

The medical staff interrupted their prayer vigil with the incredible news. I had just regained consciousness. As they prayed for me over their Thanksgiving meal, I slowly opened my eyes. I believe, now, that prayers are miraculous if they are sincere. God performed a true miracle on that day. The fact that it was Thanksgiving Day is enough to incur shock and awe from anyone who is aware of this scenario. This was my rebirth, the day I cheated death. To say this was by far the most miraculous day of my life would be a massive understatement.

It Is Always Darkest Before Dawn: Learning To Live With Cerebellar Injury

Thus began my neurological downfall. It would be too simple if that was all, wouldn’t it? Neurological issues are complex. They are not even remotely simple. After the cerebellar stroke and my two week coma, I was transported by a non-emergency ambulance to a physical rehabilitation center, primarily with patients there for numerous neurological issues. I had severe dysphagia –the inability to swallow. Because of the dysphagia, I had regular cameras shoved up my nose and down the back of my throat. Luckily, they were coated in KY jelly to soften the shock. Having lost all muscle control, I had to be rolled onto a tarp and be hoisted in the air to gather my weight. I looked like a fish you’d see on the side of a pier. I was forced to play connect four during therapy sessions to work on my fine motor coordination. At first, I could not manage to pick up a single chip. I had depleted the oxygen in my cerebellum so severely that is was now around 1/3 the average size.

If there is one thing to know about me it is this: I do not even remotely appreciate being told what I can or cannot do. So when they told me that I would spend my entire life in an assisted living facility and would never walk again, I had to make a choice. I decided they were wrong and that I would walk again and live on me on my own. So I fought and was prepared to fight to regain my life. After all, I woke up from a coma on Thanksgiving Day. This was no different. I was prepared to get my life back.

Thus Begins My Defiance of My Doctors: Simultaneously Battling Physical and Mental Illness

I do not think my therapists expected what they got from me. If they gave me home exercises, I did them twice to improve twice as well. It took me close to a year to actually verbally communicate again, but I was quite incoherent. It took close to 7 years for people to actually understand what I was saying. I spent my first 3 years post-stroke convalescing in my mother’s home. My family steadfastly believed in me and supported me. My mother and siblings surprised with a fancy recumbent bicycle that I could keep in the living room, near my chair so I could hobble over to it with my walker. They wanted to surprise me with something that would help rebuild my leg muscles.

I remember doing hours of wall sits. I once tried to do the in the dining room and was straining very hard. The carpet scooted forward and my feet flew out from under me. I landed squarely on my tailbone. My family somehow got me into their car and transported me to the nearest medcare center. Luckily it was not broken, but I spent the next 2 weeks lying sideways on the living room couch in sheer misery. Fortunately, there was not a huge amount of force on my tailbone, as I was battling anorexia nervosa at the time and did not have very much mass. This was also of year of my favorite potato starch thickener. This is what they give to patient in nursing homes with dysphagia so that they do not aspirate fluid into their lungs and wind up with sever pneumonia. I had to add this to all my drinks. Coffee and water took on the constituency of pudding.

I was also severely mentally ill and was unable to take any psychiatric medication. Add to that, I was drinking a liter of vodka daily and using heroin and cocaine before my stroke. Suffering from untreated mental illness, substance abuse, an eating disorder, a severe disability, and issues with self-mutilation is not exactly a cake walk. Somehow, thankfully, at this point in my life, I had to realize that this was my current physical situation and that no amount of praying or wishing it was different would change a damn thing. I was here… now I was here… nothing would change that except hard work on my part. I learned that recovery was a process and that there is no finish line. It is something you have to constantly put effort into if you want to grow and progress. Was it easy?? HELL no! Worth every single second of misery and struggle? Without a doubt!!

The Courage To Be Strong and Happy

recovering after cerebellar stroke.
Battling anorexia while recovering from cerebellar stroke.

Fortunately, yes, fortunately, I did not feel as though that was enough. Shortly after I believed I was healing, I went back to my old behaviors. I had experienced the joy in life and it was unbearable. My motto was that pain is comfortable. Happiness scared me. On December 15, 2013 I said: ENOUGH! I decided I was willing to do ANYTHING! I had worked so damn hard to regain my life, if I did not give my heart and soul to my life, I knew I’d die. And that was not worth anything. If I had to scream and cry, if I could not stand the mental or physical torment, I would face it with all the courage I could bring forth. I’m glad to say that I have been sober and eating disorder free as well as mentally stable for years now. If there is one thing I know with certainty, it is that life has many hurdles. When you trip over one, you have a choice between staying on the ground or standing up and brushing yourself off. You will see now how, when you are determined as HELL, NOTHING can stop you.

From Soup Cans to Barbells and Patient to Trainer

Shortly after I got sober, I decided I was not just going to live and walk again. I was going full throttle. I worked full days at GNC using my walker and spent my spare time every day at the local gym. I thrived amongst weights. I decided to become a personal trainer, with my walker if I had to. I had risen from a pile of ashes. I no longer believed anything was impossible. I enrolled at NASM and then I thought, I am not stopping there and so I also enrolled in courses to train senior citizens and to become a certified corrective exercise specialist. Several years later, I became certified to train clients with Parkinson’s disease.

Surviving and thriving after cerebellar stroke
Lifting weights to recover from a cerebellar stroke.

Not long after sitting through a proctored exam and passing it easily, I had a talk with my stepfather (who is really my dad). He also believes in achieving the impossible and has consistently done it himself. I asked him what big thing I should attempt next. He suggested I try the Paralympics. I thought “That might be the most insane thing someone’s ever suggested to me! I used to weigh 80 pounds and eat sugar free gum for dinner!” Then I realized that I had actually been insane and that it was time to become “good” insane! I want to inspire others through example; to show others with physical disabilities that if someone like ME can use exercise to vastly improve their physical situation, they ABSOLUTELY can too. I have people tell me I work too hard but it’s not up to them, is it? So I got to work. As is the case with me, the universe decided it was not yet done challenging me.

In January of 2020, I was told my cerebellum was now 75% too small and I might possibly have congenital ataxia. I have yet to see specialists, and honestly, I am not concerned right now. My physical training is making me better and any negative diagnosis is null and void to me. I carefully listen to my doctors, but they are fallible. Every human being is fallible. So I will keep going, whatever challenge I face. I know what giving up on yourself is like. It is a feeling I would not wish on my worst enemy. I will not give up. No one will limit me or make me feel small because of my condition. Medicine does not measure the human spirit. Guess what? I can now walk holding walker with 25 pound weight plates inside of it. I can deadlift 190 pounds and squat a 180 pound barbell. I began this journey lifting soup cans. Soup cans! If you’re struggling physically, remember that I started with curling soup cans in a wheelchair and now can lift almost 200lbs.

Final Thoughts

I would absolutely never change the fact that I am disabled. It has changed my life for the better. It has taught me responsibility, a sense of awe of how difficult things are for some people, and gratitude for literally everything. Every minute I exist, everything I am, is a gift. I absolutely REFUSE to waste it. When everything you believed was important and everything you took for granted is taken away from you, you realize at some point that you are at a crossroads. Either give up and literally die or accept your lot with dignity and grace. I do not know what my future holds, but you can be damned certain that I am not going down without a fight! We all have choice. Many things are beyond my control, the effort I put towards my physical self is absolutely up to me!

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. 

Recovery From Alcohol Induced Gastric Beriberi and Dysautonomia

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Early Alcoholism: A Precursor to Thiamine Deficiency and Dysautonomia

When I was in my 20’s, I was an alcoholic student in a Nordic country. I was a perpetual student enrolling every year, but getting very little done. I mostly read and drank. I stopped drinking in 2015 because it was too tiring to be drunk all the time. Stopping wasn’t difficult. I didn’t get any joy of alcohol anymore anyway. I became fit, resumed studies, and graduated in 2018. I went on a vegetable-based low carb diet and took B vitamins thinking I might need them after years of drinking. I felt fine. I was a little overweight but not too much. I also took a handful of basic vitamins and magnesium, in addition to the B complex. I had four years of a pretty healthy life before everything fell apart and I developed a variety of dysautonomia symptoms related to thiamine deficiency.

The Emergence of Dysautonomia

In February 2020, I became ill with a myriad of symptoms. I had costochondritis. (Defined as “an inflammation of the connective tissue where the ribs attach to the breastbone .Characterized by dull to sharp pain at the front of the chest wall that may radiate to the back or abdomen.”) I had constipation to the point of impaction, I couldn’t regulate my temperature, and kept shivering under several blankets. I wasn’t able to swallow properly because food got stuck in my throat.

In March the Covid-panic was at its worst and I sat tight at home, thinking I’d just need to weather it out rather than make an appointment with my doctor and risk getting Covid. During this time, I had constant vertigo and had to hug the walls of my house as I moved around. Vertigo made me motion sick.

In May things looked up, the panic had changed into hopeful masking. The state I lived in hadn’t gotten its first wave yet and so I made an appointment with my doctor. I left with motion sickness medicines and routine labs done, which showed nothing remarkable. I was able to recover from the costochondritis and constipation. I was using laxatives now regularly. It didn’t bother me after the agony of an impacted colon.

I was now having fulltime dysautonomia, with hypothermia and vertigo being the most prominent symptoms. I still had difficulty swallowing but it was something I decided was psychosomatic because of the stress. I just ate very carefully and avoided things that would make me choke.

Stumbling Onto Thiamine Deficiency

I ran into Hormones Matter blog after joining a reddit group r/dysautonomia. One poster kept repeatedly posting “thiamine deficiency” to people describing their symptoms and quoting parts of Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition by Lonsdale & Marrs. I bought the book and read it.

I went to see my doctor again, telling her that I wasn’t recovering. I asked to get whole blood B1 tested, she refused saying I don’t look like I had beriberi, with a chuckle. That hurt. Pictures of beriberi patients are invariably people who are emaciated to the point of starvation. I am still slightly overweight.

I began high dose thiamine in October 2020 on my own.

I started taking Allithiamine and later Thiamax. I tolerated the TTFD (thiamine tetrahydrofurfuryl disulfide, a thiamine derivative used in the formulations for Allithiamine and Thiamax) fabulously. I titrated the dose per symptoms until I felt fine. I was startled how high I needed to go. At times in December, I was at 400-500 mg TTFD per day + 300 mg of benfotiamine during the night. I would notice the effect wearing off in 4 hours and needed to re-dose because all the symptoms came back.

My Experience with Thiamine Supplementation

My experience with TTFD was head clarity and enormous sense of wellbeing. Benfotiamine made my temperature regulating issues go away and gave me good sleep. I was often having bouts of hypothermia when ill and shivering under blankets. Benfotiamine helped in this more than TTFD.

TTFD solved the constipation and swallowing issues, which would support the vagal lesion theory. Lonsdale describes gastroparesis and dysphagia as a “central lesion” in the GI tract affected by beriberi. I noticed the effect of feeling GI peristalsis kick start and make a sort of “chugging” motion after I took TTFD. If I ate steak, I made sure to take TTFD before because it made my swallowing effortless. Previously, I always had choking hazard because bits of meat would get stuck in my throat and I had to flush them down with water.

I took other B vitamins individually to supplement. The amounts were the same as most B complexes. I took 300 mg of magnesium taurate through the day and 1/2 teaspoon of potassium chloride in water through the day as well. I began taking 150 mcg of molybdenum and 200 mcg of selenium. I took one drop of iodine a day too. I listened to Elliot Overton’s talks about TTFD.

Titrating the Supplements Down After Recovery

Over the spring, I was able to reduce TTFD, going down about 50mg a month, most months. If I felt symptoms coming back – the coldness, vertigo – I decided I wasn’t ready for nipping more off and resumed the previous months’ dose where I felt fine. I have been off of TTFD now since June and completely symptom free from my dysautonomia, constipation, vertigo, swallowing difficulties, continuous nausea – all since April.

I’m still intolerant to many supplements, but I can take Thorne’s Basic B to keep covering the B’s. I still take magnesium and potassium with the B complex, occasionally molybdenum and selenium in small doses. Iodine, if I remember. I don’t know if they contributed any, but they may have.

I must mention that years past when I took Basic B, I felt nothing. Now, I feel a bit energized after taking it and I have a bowel movement. This is similar to my experience with TTFD. I believe that TTFD has enabled me to uptake the regular thiamine HCL, and that for some reason with my history of heavy drinking and bad nutrition, my early beriberi-affected system was not able to transport thiamine HCL that was in the B complex. However, now it feels like it does. I will try to get the other nutrients from food.

What I did not do:

  • megadose any other B vitamin
  • address any oxalate issue
  • make any dietary changes. I kept eating the same low carb I always ate
  • address any histamine issue

I did not do any of those because I was making progress with TTFD and B complex with the usual minerals.

My illness wasn’t long compared to others that I have read about. That may be also why recovery was swift. I also had a pretty good nutritional status to begin with, with magnesium and potassium on board – and probably no other vitamin deficiencies. This is my story. I am forever grateful for Drs. Lonsdale and Marrs for the book and this website.

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.

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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