Many of you have asked about my estrogen issues I've mentioned these last months. I've felt torn about discussing this on the blog, but ultimately I've come to realize many other women are struggling with what I've been struggling with. I started this blog to help others and if my story can help even one woman out there, then it's worth it. If you're a male reading this, I'll forewarn you we're talking girl stuff today. Now it's time to tell my story.
Several years ago ago, I lost my period. It stopped mysteriously about a year after my weight loss. Despite being on birth control since 16, nothing was happening. My OBGYN told me this "normal" due to my low body fat and high activity level and to not be concerned with it. Little did I know how very concerned I should have been and how detrimental this was to my health.
Around the same time my periods disappeared, I was diagnosed with iron deficient anemia. I was very sick during this time. Twice I almost needed blood transfusions. After having thousands of dollars worth of tests and being passed around from specialist to specialist, I was never diagnosed with anything. I eventually ended up at hematologist who I still see to monitor my anemia. I mention the anemia because one cause of iron deficient anemia is heavy periods which I wasn't having. I was told this was highly rare.
In addition to the anemia, I also suffered other symptoms. I had bouts of B12 deficiency. After giving myself 2 rounds of B12 injections my doctor prescribed, my levels returned to normal. I experienced low libido and vaginal dryness. Then there were the night sweats. I would wake up in the middle of the night drenched in water. I kept a shirt next to my bed to change into during the night. This went on for years. I thought it was just part of getting older. Things begin to change in the female body after 35. I assumed this was normal for my age. I was wrong.
Fast forward to January 2014, my first stress fracture. Then in June, following the stress fracture, I saw my primary care doctor. She's a friend from the gym and knew what I had been going through. Since it was my first time seeing her, we went through my entire medical history in detail. Knowing of my stress fracture then hearing of my missing periods, she was immediately concerned about my estrogen. She explained how critical it was to have enough estrogen to protect bones and even more important as an active person. She did blood work and a bone scan. The blood work showed the following.
I had no estrogen or testosterone. My doctor advised me to share the results with my OBGYN which I did and she then referred me to an endocrinologist. When I saw my first endocrinologist, he went through my history and the tests he could run to identify the cause of my missing estrogen. Oddly enough every test he named, I already had for my mysterious anemia. Thyroid, pituitary, bone marrow, kidney, stool, urinalysis, biopsy for celiac, endoscopy, colonoscopy, uterine & ovarian ultrasound, autoimmune disease and genetic predisposition tests. All of which returned normal in the past. He told me I had all the tests and there was simply no explanation for my missing estrogen and "as long as you're not trying to get pregnant, you're missing periods aren't a problem." I saw this endocrinologist August 2014.
By October, I had symptoms already of a second stress fracture, however, I was misdiagnosed by 3 orthopedic surgeons and it went undiagnosed until December 2014. At that time, I began going to Mayo Clinic thinking they are the "best doctors" in the world and will be able to get to the bottom of my mysterious issues. In January/February 2015, I was passed around like a Thanksgiving turkey from one Mayo Clinic specialist to another.
First I consulted with an endocrinologist. He did more blood work, another bone scan (because they claim theirs is better than the one I had at my PCP) and gave me a calcium urine test as homework. When I returned for the results, I was told I have no estrogen or calcium and had osteopenia. No estrogen and no calcium were the cause of my stress fractures. But I already knew this. The doctor told me things I already knew, but I wanted to know why. He couldn't answer why. I was so frustrated.
He further stated I showed no calcium in my urinalysis. From what I understand, calcium is supposed to appear in your urine. Despite my taking daily supplements for years and eating plenty of foods high in calcium nothing showed in mine. I asked him why that would be. Am I not taking the right kind of calcium? Do I need to take it with something else to be better absorbed? He didn't know those answers. He simply told me to start taking more calcium and stop working out. "You're not meant to be active."
I've discovered through my own research that in order for calcium to be properly absorbed in the body it should be taken with magnesium, vitamin D3 & vitamin K12. Otherwise the calcium can calcify in the arteries or joints. This really scares me. My Mom had open heart surgery last year due to calcification. Every person in my family has had heart problems. I can only imagine where all the extra calcium pills have been going.
After the endocrinologist, I saw an OBGYN at Mayo. He theorized a brain tumor, premature menopause or ovarian cancer. He told me the pill I had been on was a low estrogen pill and that over time it's common for females to lose their period on that pill.
Finally something that made some sort of sense. What he didn't know was why my body didn't kick in and produce estrogen on its own. He ordered another ultrasound and more blood work to rule things out. He also switched me to a high dose estrogen pill to protect my bones. A few weeks later, I received a call from Mayo saying my OBGYN had to take a leave of absence and they had to transfer my follow-up appointment to another OBGYN. You know what my reaction was to that.
When I saw the new OBGYN, I was done. DONE. DONE. DONE. I was not nice to her and she wasn't nice back. I expressed my extreme frustration with the medical system and that no one was advocating for me or my health. I was being passed from doctor to doctor getting no real answers. She simply said "that's not the way our medical system works, right, wrong or indifferent."
Once we agreed to disagree, I told her I had a period after switching to the new birth control pill. She confirmed again that I didn't have a brain tumor and wasn't pre-menopausal. She told me my ultrasound showed a polyp in my uterus which formed from not having periods for many years. She explained they needed to monitor it and that if it didn't go away on its own, I would need to have it surgically removed.
Then she asked about my stress around the time of my missing periods and first stress fracture. I told her how my crazy consulting job had me stressed like never before in my life, I was averaging 40-50 miles a week, working out 2-3 hours a day and went through a really bad breakup. To say I was under a little stress, was an understatement. I told her it was the most stress I felt in my life. I have no idea how I survived it. That's when she told me I have hypothalamic amenorrhea.
HA is not very well known or documented and there isn't a specific test for it really. Missing periods is the key along with low body fat and stress. People have HA when their body is under too much stress. When the body senses stress, it shuts down the non vitals. The way she described it to me was to imagine myself on a deserted island.
The body senses the stress of being stranded and begins shutting down what it doesn't need to preserve itself. It stops producing estrogen first to prevent pregnancy. When it comes to exercise, the body interprets it as stress. It doesn't know the difference between good and bad stress. It's all just stress. My entire life I have always been an anxious stress ball.
The problem with being diagnosed with HA is there is no cure. You can control it by reducing stress and eating more. She told me I needed to drastically reduce my stress. Quit my job if I had to. I've done what I can to reduce my stress by trying to not letting work stress me out, getting enough sleep, doing more of the things I enjoy like photography and writing and doing less intense workouts (more walking, hiking, swimming, weight lifting). Truthfully stress will forever be a balancing act for me.
My biggest challenge is lack of hunger. Since my injuries, I feel very little hunger. I feel like I'm forcing myself to eat. It's as if my metabolism has stopped working. I eat because I know I need to. In fact, it's really important when you have HA to eat. One of the reasons I count calories is to ensure I'm getting enough food. I don't want people reading this to interpret this as an eating problem. I have a very healthy appetite. But something changed with my last injury. I suspect my hormone imbalance is the cause along with the sadness I've been feeling.
While I'm relieved to have a diagnosis, I'd be lying if I said I'm ok with it. I'm not ok with it. I want my body and my health back. Being on a higher dose estrogen pill for 3 months changed my body. My breasts, butt and thighs have grown. I can't lose weight. From what I researched, this is a side effect of being estrogen dominant. I also have a weird sensation I can't describe. It's like I'm teenager with raging hormones again. I have belly fat that has appeared out of no where despite being very active and watching my diet. I felt going from zero estrogen to the highest dose estrogen birth control pill was too much for my body. It should have been done in stages. Additionally, my periods were so horrible I was throwing up from the severe cramping. I never had cramps like this in my life.
A few weeks ago, I saw my PCP & we discussed alternate options to birth control. I told her I want my body to find it's own rhythm and heal itself naturally. She prescribed me a medication that stimulates bone growth (prescribed to osteoporosis patients) and can help induce estrogen production. She switched me to this medication and I stopped taking the pill.
It scares me because I don't want another stress fracture especially now that my good foot is hurting, but I can't see using birth control as a crutch the rest of my life. Who knows what that does to you long term either. Earlier this week I saw a naturopath doctor who has me doing specific things to naturally rebalance my hormones. She also identified issues with my kidneys and thyroid. After seeing her, I felt optimistic about my health for the first time in months.
These months I've cried a lot. All the time actually. In bed at night, in the car, in the bathroom at work because I feel so very alone with this and have no one to talk to. Someone to give me a hug and tell me it's gonna be okay. I don't think people understand how cautious I have to be about taking on too much work or resting when I need to.
Thankfully I've had many amazing women reach out to me these past months. To Ashley, Emily and Margo I'm thankful for your emails and support. I don't know if I'll ever be able to accept how sensitive my body is and the fear of not knowing where I am on the stress scale. I never know if I'm working too much. I never know if I'm exercising too much. I never know if I'm not eating enough. It's scary how very fragile our bodies are.
What I do know is not having a period isn't okay. It can wreak havoc on your body and damage your health. If you're reading this, and this is you, I urge you to be your own health advocate and get answers. And do not let a doctor tell you it's okay.
If you are a medical professional reading this, I urge you to advocate for your patients and investigate their issues. Remember why you went into medicine, to help people.
Related:
My Gluten Free Story, How Gluten Stopped My Hormones
My Battle With Estrogen The Aftermath of An HA Diagnosis
Why I Became A Nutrition Practitioner, My Health Battle
After 20 years of HA I am a month into being birth control free and stopping all exercise and eating 2000+ calories a day. I hate to say it but I think you need to let go of the strict exercise and calorie restriction and be kinder to yourself. In fact by eating more you will reset your metabolism so that it can function properly and you can go back to a reasonable amount of exercise, eat enough to sustain your lifestyle and your cycles. Your body has likely been in deficit for a long time and you can’t expect it to want to nourish a baby too. Be kind to yourself and your body will thank you. Believe me I totally understand how hard this is. My husband nearly had the weighing scales thrown at him for suggesting I look healthier . Take care x
Hi Laura, not sure if you're talking to me with your comment or another commenter. This post was written in 2015 and my issues had nothing to do with my exercise or not eating enough. That is common for some women with HA, but was not true for me. The cause of my issues was undiagnosed Hashimoto's disease and gluten issues and my birth control use for decades worsened my symptoms. During 2015, I was eating 2500 calories daily and still losing weight. You should never assume you know someone else's health journey and assume that food and exercise is the root cause. In my case, there was much more complexity going on which is why you don't diagnose someone you know nothing about on the internet. I wrote about my healing in a follow-up post: https://skinnyfitalicious.com/my-gluten-free-story-hashimotos/
If you’re still struggling with this read No Period Now What!
The related posts at the bottom of this post explain how my issue was resolved. Mine was Hashimoto's and gluten related.
Hi Megan!
The exact same story happened to me a while ago. I was also a vegetarian for some years and my period we went off for 3 years. I didn't know what was wrong with my body and the only answer i ever got from the doctors was that I should take the pill, which I never did.
During this time, I learned that my body needs more protein than I was giving it in order to function correctly.
I started craving meat again so I gave myself the opportunity to start eating meat again and a week later I got my period back.
I have been quite regular since then but then I recently went under a lot of stress at work and now I'm waiting for my period to come back since 1 month already.
Im taking a supplement of Ashwaghanda mixed with Magnesium and Vitamins D and B which hopefully is going to help me cope with the cortisol levels.
My recommendation would be to go visit a psychoinmunorologist, a doctor who studies the link between your diet, your gut heatlh and your hormones.
I read a book from a really good one (he's Spanish) but I'm sure there are many other English-speaking good ones.
Wishing you all the best!!
Esther.
Hi there, this post is from 2015 and since then the root cause was identified as Hashimoto's. The follow up post is here: https://skinnyfitalicious.com/my-gluten-free-story-hashimotos/
Your story sounds very similar to mine. I've been dealing with doctor bingo now for over 2 years, spending thousands and thousands of dollars and trying all kinds of treatments that were just making me worse. I also thought that going to Mayo Clinic would be my savior. "If they can't figure me out, then no one can!" Not so much! I went through all of their specialists and all of their tests and everything came back normal. So I went back to my regular PCP outside of Mayo who determined that I am copper toxic, most likely due to estrogen dominance. Most doctors don't know to test for this, only the one's with specialty training or naturopath. Getting off of birth control is essential!!! And if you haven't had a copper serum test, I urge you to do that as well. I finally went and had my tubes tied last October so I could be done with birth control once and for all. During that time it was also discovered that I have endometriosis. Which could have been caused by estrogen. Since then I changed my diet, started taking certain supplements, stopped using plastic, changed my water and so many other things. I am still in the process of detoxing and after YEARS of being on the pill, it may take a while to get back to normal.
Would you be able to share which drug this was? --> "She prescribed me a medication that stimulates bone growth (prescribed to osteoporosis patients) and can help induce estrogen production."
Did you end up taking it / did it work? (I'm having similar convos with my PCP right now, and the options terrify me.)
Thank you!
I don't remember the name of it, but my PCP took me off it a week later stating it was for 75+ people and was not appropriate for me. It was an assistant who originally prescribed it. Given my lack of estrogen, this would not have solved my issues anyway.
Hi Megan! I can sympathize with you 100 % our stories are very familiar. I recently suffered a stress fracture- was diagnosed with low estrogen, constant infections along with other frustrating vaginal symptoms. Going off the birth control pill on the advice of my gyno seemed to fast track me into menopause it’s awful. Going back on high dose birth control seems to be their only recommendation.
I am currently seeing a specialist in your neck of the woods in Arizona.
Would love to connect more with you about the new medication you’re on if you would be up for a chat.
Take care,
Kathryn
Hi Kathryn, I'm sorry to hear about what's going on with you and I hope you can get it resolved soon. I really don't wish this on anyone. I'm actually not taking anything. I wrote a recap post here about everything that happened: https://skinnyfitalicious.com/my-gluten-free-story-hashimotos/ Feel free to reach out anytime.
Thank you for sharing! my cousin, Amanda Tobin battles with HA and I was not sure what it was but. This thing that you put on here really helps explain everything really well. So thank you!
I'm glad you found it helpful!
Thank you for your blog, gave me comfort that I'm not the only one with the mysterious lost periods. I came off the pill 2 years ago, my period never returned. I'm average weight, rarely exercise and eat plenty. I'm 43. The only explanation I was given as I didn't want to have tests was that possibly I went into menopause during the time I was on the pill. Interesting to know from your blog it may well be another reason! Although I don't need it to come back as I'm not having children, I'd still like to know what caused it. I need the closure!
This hypothalamic amenorrhea has something to do with the hypothalamus?
Yes, the hypothalamus senses too much stress and slows down metabolism, thyroid and reproduction because it thinks the body is under attack. Both real and perceived (psychological) stress can cause it.
I have the same issues but I have premature ovarian failure since age 35, now I am 40. I have the same symptoms and cannot find a balance anymore. I tried HRT but I keep getting cyclic problems. Due to this I have a lot of stress, also because POI is causing me daily migraines. I also had to quit my study and live with my parents. My body is aging fast after menopause. Have you any suggestions. I was always thin, 1.82 and 65 kg. Now I weight 63 kg. I have a list of 34 menopause symptoms.
If you have ovarian failure and are in menopause, then I would expect you not to have a period. I guess the question is why did that happen. What was the root cause? I'm not really sure how to provide suggestions because I don't have enough information on your medical history.