If you're new to my blog, please check out my previous blog post to know more about my background and how I was diagnosed with Hypothalamic Amenorrhea (HA) here
A Brief Overview of HA:
Hypothalamic Amenorrhea - when you lose your period completely, have prolonged periods, or irregular periods due to lack of energy for the reproductive system to work properly. There are a lot of factors that play into this but it typically comes down to exercising too much and not eating enough.
Main Factors Involved:
As you know from my previous post, I had a difficult experience with a nurse practitioner diagnosing me with Polycystic Ovarian Syndrome (PCOS) without discussing my symptoms or my history.. let alone doing bloodwork or an ultrasound!
Once I found out I had HA, I was very hurt and discouraged. I was embarrassed that as a healthcare professional - Physical Therapist and Strength & Conditioning Specialist- that I didn't know there was something wrong with me. But now the truth was right in front of me the entire time.
All of those years I went to countless physician appointments (primary care and gynecology) and was told that "you are the picture of health" and "you have nothing to worry about" continued to haunt me.
How could I have not known this??
For those of you who know me personally know that I am a researcher.. AKA nerd #nerdalert.
I took several days to research PCOS and Amenorrhea and learned more about HA. I can give you SO many statistics about the average BMI and body fat of women who conceive and the FSH, LH and progresterone levels to ovulate but I'll spare you just this once :)
Through my research, I found a book called No Period, Now What? It has been so very helpful throughout this process. It shows evidence-based research (right up my alley!!) to support HA diagnoses and a step-by-step Recovery Plan. It even has a section for significant others and spouses!
I learned that it was very commonly misdiagnosed and not many people knew much about it (even specialists in obstetrics and gynecology).
To be honest, I'm not sure why that surprised me so much. I see it in my profession all the time.. where many people are mislead to take pain medication and undergo unnecessary injections and surgeries to end up right where they left off..
STILL IN PAIN.
If it's that way in the Orthopedic world then why would it be any different in Women's Health?
Our first thought is, "What medication can help me with that?" rather than figuring out the underlying issue.
Okay.. I'll get off my soap box!
So I decided to follow the Recovery Plan in the book No period, now what?
The plan looks a little something like this:
For someone like me - I have NEVER had a regular cycle and usually only have 1-2 per year - then the recovery process needs to be drastic... literally, life altering.
My body fat was also very low so I had to gain some weight and provide my body with a little bit of extra cushion ;)
Now if you're reading this and thinking, "this is bonkers.. how does this help anything?" then you're not alone. I had a VERY difficult time hearing this.
My entire life I've been active and moving. I rarely sit down. I eat when I'm hungry (which is pretty much all the time) and like to keep moving throughout the day. I can also be a bit of a stress ball and that's partly due to me wanting to please and be accepted by everyone.. I also overthink everything I say (not always but sometimes) which causes unnecessary stress.
So to counteract all of that I have to go for long walks, do light yoga, eat as much as want and listen to my hunger cues. I have to incorporate more fat and carbs into my diet- I was unintentionally eating a low carb and low fat diet without realizing it.
I wasn't properly nourishing myself even though it seemed like I was eating ALL. THE. TIME. It wasn't enough and I've learned tricks to incorporate more fats and needed calories without even noticing it.
Moving on.. let's get to the meat and potatoes..
I recently had my bloodwork done and all of my hormone levels were within normal limits!! And I'm talking mid-range levels.. not on the lower range of normal. I wish I had done bloodwork before I started the Recovery Plan to show how much of a difference it made!
When I was in my early 20s I had bloodwork done and at the time I didn't even care to look at the numbers.. I blindly trusted my physician. But I do remember them being very low. I remember the physician telling me they were well below normal limits but that birth control would get them "back on track."
Since that encounter, my exercise, eating and stress habits haven't changed much so I can assume that my bloodwork would have been quite low before starting the Recovery Plan.
I also ended up having to get off birth control. With birth control, my periods were "regular." However, after undergoing an arthroscopic shoulder surgery I developed a blood clot in my arm that eventually went to my lungs (AKA pulmonary embolism (PE)- the silent killer).
After the blood clot and PE, I was not allowed to take estrogen supplements (AKA birth control) and guess what? ... 4 years later and still irregular periods. I thought the birth control was supposed to "fix" it?
This recovery process has been one of the most difficult (if not THE most difficult) thing I have faced in my life. I didn't realize how important exercise was to me. I also didn't realize the impact that my body image had on my life.
Since starting my company, I had a healthy view of my body and grew to love my muscles and strength. I was empowered to be a fit female confident in my ability to move and explore the world!
I believe that I will be able to return to working out and moving freely! But my first priority is my health.. BMI and body fat doesn't define me. I have (and probably will) continue to gain more weight during the recovery process but that's okay.
It can be frustrating seeing other women work out as often as they please without having to worry about it affecting their hormones. But I have come to appreciate how every body has a unique genetic makeup.
One person may function great at a BMI of 19 and someone else may function better at a BMI of 23. One person may function well at a body fat of 18% while someone else may function better at a body fat of 23%.
I believe that I'm going through this for a reason.. whether it's to raise awareness for HA to individual women or if it's to discuss this diagnoses (respectfully) with physicians to prevent other women from being misdiagnosed.
I haven't figured out what my role is just yet but I look forward to finding that out.
I want to give a shout out to all of my friends, family and followers who have been so supportive through all of this! There have been many times I wanted to say "forget this, give me the medications!" so I could return to my old way of life but so many people encouraged me to keep on the Recovery Plan.
I also want to throw an extra big shoutout to the hubs!! There have been many nights where I have questioned (and I"m sure there will continue to be more) if I'm doing the right thing. And time and time again, he would continue to tell me how much he loves me and is thankful that I'm doing this for our family. I could not be doing this without him!
For those of you who have been to countless physician's to be told that "you're perfectly normal" but are fearful that something isn't right.. I urge you to read the book No period, now what? It's an informative read backed up by evidence-based research!
The book also teaches you how to read your lab results after having bloodwork done. It also explains how you may have follicular cysts on your ovaries that are from lack of ovulation. They will go away once you have recovered and are regulated but if you're not careful, can easily be misdiagnosed as PCOS.
It's important that we advocate for our health! And in order to properly do so we have to be educated! That may require us to respectfully disagree with our physicians on occasion.. but that's okay! As long as we do so in a kind manner then there should be no issues.
Just know that with the change in healthcare, physicians are seeing more and more patients daily. It's tough for them to remember everything you told them when they're juggling 20-30 other patients that day. So knowing your specific measurements and understanding that BMI is not the only indicator. You can be in a "normal" and "healthy" BMI range but still have HA. You can also be below the "healthy" BMI range without having HA. It all depends on a thorough understanding of your history.
Please feel free to shoot me any questions that you might have! I would love to hear what you think about HA and to see if you might have possibly been misdiagnosed or even overlooked entirely and labeled as "healthy."
If you found this helpful please let me know by commenting below or emailing me at email@example.com
Dr. Katie Spruell, PT, DPT, CSCS
Hey friends! So if you had told me just a few months ago that I would write a topic about being TOO fit then I would have told you that you're bonkers! This is my expertise.. there can never be too much of a good thing, right??
Okay, let's back it up before we get into the real nitty gritty..
Let me start by giving you a brief background about me :)
Sooo.. I've been active pretty much my entire life. I mean really.. I started dribbling a basketball when I was 3! I couldn't let my older brother show me out! Fast-forward 10-15 years later and I'm playing on a Nike traveling team in the summer and playing for my high school the rest of the year. It was a full-time job and I had very little down time. My entire focus was on my basketball career.
I earned a full ride scholarship to UMBC- for you March Madness fans, you might recognize that name. This past year the men's team was the first #16 seed to defeat a #1 Seed, Virginia, in the tournament! I played there for 2 years and decided I wanted to be closer to home so I transferred to Belmont University located in Nashville, TN. That's where I met the hubs and pursued obtaining a Doctor of Physical Therapy.
During Physical Therapy school, I got away from the world of basketball and started to dive head first into training for half marathons and olympic triathlons. I have always (and will always) be a competitor so I needed something to train for and compete in.
I also started researching and learning more about nutrition - even though I was just scratching the surface - because I wanted to learn how to properly fuel myself for training. I believe that proper nutrition is paramount to succeed at any sport. You can train twice as much as everyone else but if you're not adequately fueled then your body will not be able to perform at the optimal level.. That's why the things I'll discuss a bit later have been so tough on me!
Even though I had experience playing at the elite level, earned a Doctor of Physical Therapy and became a certified Strength & Conditioning Specialist, there was still a HUGE aspect of my life that I was putting on the back burner. It had become the norm to me so I didn't think too much into it.
Over the years, I had yearly check-ups and discussed this topic with specialists in that particular field with little to no avail. Each physician told me that I was completely normal and that I need not to worry..
Okay.. so you might know the direction I'm heading in or you might be thinking TELL US ALREADY...
This is a topic that most people do not talk about and to be quite honest, I'm not the most comfortable sharing either. However, I want to raise awareness because (especially in the fitness industry) I know there are other girls who struggle with this and feel as though there is no hope.. or perhaps, they have been misguided and will not realize it until later in life (like me).
What I have struggled with, every since hitting puberty, is amenorrhea- which is absent or missed periods. I started my period when I was 13 but then would only have one a year for the next 3 years. Each time I would go in for my check-up with my gynecologist, she would say not to worry and it's completely normal for someone who is active to not have a period. She would continually encourage me that I was healthy and all was well.
Now before I continue, I want to say that I highly respect the health professionals within Women's Health and that I know they are able to help MANY women all across the boards.
My main point is to raise awareness for this particular topic because it seems that it is quite often overlooked BY EVERYONE. Most healthcare professionals are being taught that the pill (birth control) is the bees knees and that's all we need to make the world go 'round.
The fact that I have seen 5 different gynecological specialists - 1 in Knoxville, 1 in Baltimore, 3 in Nashville - and they all have said the same thing over the past 10 years says a lot. I have read the literature and have seen that there is more research being done to show the negative implications of amenorrhea and that it can not simply be treated by birth control. The underlying cause NEEDS to be addressed and we need to stop putting band-aids on things crossing our fingers in hopes that they will heal on their own.
Now that's cleared up.. back to what I was saying before..
I have gone YEARS without having a regular cycle and had no clue what that was doing to my body. 10 years later - 5 years into marriage - my husband and I are in the early stages (emphasis on early) of trying to conceive and I had an appointment to see a nurse practitioner that works under my current gynecologist (I saw her because I would have had to wait 3 months to see my regular doc).
I went into the appointment excited to break the news that we were ready to have the baby talk! I'm no dummy so I knew that I had irregular periods and that could complicate things. But since I had always been told I'm healthy (and all was well in my fertility world) then I figured they would have a few magic tricks up their sleeves to help get things flowing.. pun intended :)
Welp.. needless to say, that is not how it went.
A healthcare professional that I had never even met before who has been doing this for over 20 years stated that I could NOT have a baby because I don't have periods.. therefore I don't ovulate.
I stared at her blankly... thinking, "I didn't hear her correctly. I'm healthy. I'm a fertile myrtle. This can't be right!"
She then proceeded to say that since I have a protein C deficiency (more on that later) that I can't take birth control (remember, that's the bees knees) so she's going to refer me back to my regular gynecologist and maybe I could take some medicine or something.
Oh yeah, I almost forgot.. She also said that because I don't have regular cycles that I was at risk for cervical cancer and that she thinks I may have PCOS.
For those unfamiliar with PCOS:
PCOS stands for Polycystic Ovarian Syndrome. it is a hormonal disorder causing enlarged ovaries with small cysts on the outer edges.
3 major symptoms include:
The only symptom I had was irregular menstruation. And without doing a blood work-up or ultrasound, there is no way of knowing whether you have PCOS. They typically do it based on general presentation.
This brings me to my next topic:
Hypothalamic Amenorrhea (HA)
According to Shady Grove Fertility:
"Hypothalamic amenorrhea is a condition in which menstruation stops for several months due to a problem involving the hypothalamus. The hypothalamus is in the center of the brain and controls reproduction. It produces gonadotropin-releasing hormone (GnRH). GnRH) signals the production of other hormones needed for the egg to mature and for ovulation, such as follicle-stimulating hormone (FSH) and luteinizing hormone (LH) after ovulation. In turn, FSH and LH signal the ovaries to produce estrogen. Estrogen thins the cervical mucus and - along with progesterone (from LH) - prepares the uterus for a fertilized egg."
Now in English:
Hypothalamic amenorrhea is when you lose your period completely, have prolonged periods, or irregular periods due to lack of energy for the reproductive system to work properly. There are a lot of factors that play into this but it typically comes down to exercising too much and not eating enough.
So I have 4/5 symptoms listed for HA and only 1 symptom for PCOS. I have below average body fat, I tend to stress out a lot due to starting my company, and I exercise frequently. I could fall under the low body weight category but to me, 5'9" and 135-140 lbs is pretty average if not a bit higher than average due to muscle mass.
One other topic is food.. with doing further research, I realized I was not getting enough healthy fats into my diet and that is paramount for optimal reproductive health. I enjoy and eat all food groups but other than avocados, almonds and coconut oil, I was unintentionally eating a low-fat diet. I thought I was properly fueling myself and would average between 2,000-3000 calories per day. However, I was always and hungry and that should have been an indicator that something's not right.
A Few Fast Facts..
So clearly fertility issues are quite common. And if we are all generalized in the broad PCOS category without looking at other possible diagnoses then we are doing ourselves a disservice.
Also, if you have irregular periods.. THAT IS NOT NORMAL.. I repeat.. That is not normal!! No matter what anyone says! It might be convenient at the time to not have to worry about Aunt Flo but this is your body's way of communicating with you and begging for heeellllpp!
Here is an article from a nutritionist and nurse practitioner, Robyn Nohling, who struggled with HA (and overcame it, she has a precious nugget now) and was misdiagnosed for years. She underwent countless tests that further discouraged her until she decided to dig further into the research herself and go back to school to become a nurse practitioner. Her story is amazing!
She discusses the difference between PCOS and HA here
She also wrote an article specifically about why not getting your period is NOT normal
And lastly, she discusses a topic regarding your body's healthy set point.
Every person has a unique and individual personality and our body's are the same way. There are elite athletes who compete at a very low body fat (some even at 15-18%) who still have regular cycles. Other (like me) don't operate well at 17.5-18.5%. Each person is different and one key way of knowing if we're at our healthy set point is by our monthly flow!
Robyn goes on to say in her blog post:
"One thing about set point theory that is overlooked or not spoken about clearly I think, is that your "set point" isn't one certain number. Or even one number give or take a few pounds. No. Research estimates that the average person has a set point range of ten to twenty pounds. Ten to twenty pounds."
To wrap things up...
This has been one of the most difficult things for me to write about, or even talk about (just ask my bible study peeps from Monday!!). Part of me wanted to wait until I had everything figured out so I could say, "Look at what I struggled with and how I overcame it!" That way no one would know that, as of right now, I feel broken.
I'm broken and beaten down. I'm discouraged and ashamed. I'm even embarrassed.
I can't believe that with all of the knowledge and experience I've acquired over the years that I didn't realize this sooner.
How did I not realize that my body wasn't operating at a healthy set point?
Why didn't I think about eating a high fat diet?
How did I not know that something was wrong?
I continue to beat myself up over this.. and blame myself for the fact that I may not be able to bring a new life into this world.
The fact that I'm at the point of even considering have a nugget is a BIG DEAL. God had to do a mighty work within me to come to get to this point..
And this is what keeps bringing me back..
This is why I feel led to share this with you now! I want to take those who are interested through this journey. Because not all hope is lost!
I believe that I have been given a platform to raise awareness for this topic. And if I can help just one person (like Robyn helped encourage me) then feeling super awkward and vulnerable will be more than worth it!
I also highly encourage you to ask you OBGYN these questions. In one of the articles listed above, Robyn shows how to interpret blood work to differentiate between PCOS and HA. You can also get an ultrasound that will rule in or out PCOS by physically seeing if there are cysts on your ovaries (btw.. it's not uncommon to have cysts but those with PCOS have 12 or more.. don't quote me on that though!).
Once all the bloodwork and ultrasound checks out.. I recommend seeking out a Registered Dietician (like Robyn) to help you make sure that you're eating properly to achieve your healthy set point.
Lastly, if you LOVE exercising as much as I do and truly enjoy eating whole foods then you might want to reassess where you're at and what your goals are.
My two main goals are:
1) To continue to pursue what I love in life.. helping adults and athletes of all ages stay active and fit without relying on pain medications, injections or surgery. Through this experience, I understand the body even more now and that each person requires different nutritional requirements.. and that it's waaayy more than just calories in versus calories out when it comes to reproductive health.
You want to know how to lose weight and gain lean muscle mass or rehabilitate from a nagging injury.. then I'm your girl!! But hopefully through this journey I will learn how to help other women maintain a healthy set point while achieving their fitness goals!
For most people, not much will change. However, for the elite athlete or fitness enthusiast, it will look quite differently and I look forward to helping others navigate that process after going through it myself.
2) To make my reproductive health a priority! I want to be able to have a nugget or two (or three!) so that means I'm going to have to make some changes.
I'm going to incorporate more healthy fats to my diet. I am also going to back off high intensity exercise and switch to yoga and light walking. This will naturally entail that I'm going to gain some extra fluff and lose lean muscle. Once I regain a normal cycle, then I will once again reassess where I'm at.
I truly believe that I will once again be able to perform high intensity exercise but that I need to find balance in my life and establish my body's healthy set point first.
And I want to be honest with ya'll.. I'm not looking forward to it. Part of me fears that people won't listen to me if I gain weight. The other part says, gurrrr.. you gotta do what's best for you! Take care of yourself!
At the end of the day, it doesn't matter what others may think. I have to do what's best for me and my family. We are a unit. Nothing can break us unless we allow it to get in between us.
Sooo.. I'm both excited and scared to start this journey! I have another appointment to have a full blood work up done as well as an ultrasound. After that, I'll have an even better idea of how to navigate this temporary obstacle :)
For those who took the time to read this post in it's entirety.. THANK YOU!
Until next time...
Dr. Katie Spruel, PT, DPT, CSCS
KS Fitness + Co, LLC
"Be still and know that I am God." - Psalm 46:10
Dr. Katie Spruell, PT, DPT, CSCS
I am a licensed Physical Therapist and Certified Strength & Conditioning Specialist practicing in Nashville, TN. I started a small private practice - KS Fitness + Co, LLC - in April 2018. Recently I moved my practice to Knoxville, TN.