Why You May Feel Like You’re Losing Your Mind — And Your Hair
Hey sisterfriends, today I’d like to talk to you about why I thought I was losing my mind and why you might feel like that too. Here’s what happened + how you might be able to solve what seems like depression and anxiety, or possibly even pregnancy difficulties…
First I should say that my journey with Hashimoto’s and Celiac sure has been an interesting one. The honest truth: It totally sucks. The upside: I’ve learned empathy in spades.
For me, the struggle has been having my two main symptoms (digestive stuff and brain/visual stuff) be good at the same time. For a long time it’s seemed like I could only have one or the other.
By brain and visual stuff, here’s what I was dealing with: Not being able to process visual stimuli quickly enough. If we would drive faster than 40mph, it would set off a panic response. Same walking down the aisles of grocery stores. It’s visual overload for my brain, like my brain can’t keep up with what my eyes are seeing. Flashing lights also are a total bummer to my brain. The question was: Why?
Sometimes this isn’t an issue at all. And other times BAM. So we started playing detective…
Many months ago, we started to suspect hormones were playing a role in setting off autoimmune flare-ups. Basically half of my month was taken up by feeling awful (which is why endometriosis was suspected for years). So in an attempt to even out my hormones, I decided to go back on birth control pills (Yasmin to be exact). To not have any hormonal shifts, I would take the pill continuously without breaks, meaning you don’t have your period.
I noticed an instant difference when taking them. While my stomach wasn’t as good on them, my brain issues all but disappeared. Which was amazing. The negative impacts on my stomach were tolerable compared to the huge upside I was having on the visual stuff. Which no longer bothered me at all. So I decide to keep taking them.
But after a few months, I was becoming a hot mess again stomach-wise and not getting enough nutrients, therefore didn’t have enough energy. Why, why, why?
Two things:
One: We discovered that the Armour thyroid that I take for Hashimoto’s changed manufacturers, and now had corn as an ingredient. My immune system is as intolerant to corn as it is of gluten, which means I was poisoning myself every day.
Two: We discovered that Yasmin also has corn in it. So this was likely also setting off autoimmune reactions.
So, I stopped taking Yasmin about two months ago (and had a compound pharmacist make my thyroid medication without any added corn fillers).
When my period came I was a total disaster. I was weak from not getting enough nutrients, but also now in lots of pain with bad cramps too.
I hadn’t had any grains in over a year (yeah, you heard that right), which always made it a struggle to get enough to eat, and my doctor agreed we needed to get me more nutrients as soon as possible and start reintroducing foods like rice and quinoa. On rice I was okay, but quinoa felt like knives stabbing my insides as it went down. After a week, just as my period was over, I finally started to feel okay again.
And we started discussing with both of my doctors (both my functional doctor and my internist) on whether you could have a compound pharmacy make a birth control pill but without the corn filler. But we never got an answer…
Less than a month later, I felt like I was losing my mind.
It started on a drive from Palm Springs to LA, in which I felt so anxious that we had to pull over for 30 minutes on the side of the road and wait out a panic attack. Was it too much for my brain to be going over 40 mph? I hadn’t had much for dinner and felt like I was starving, so was it a blood sugar drop that set things off?
Following that fun episode, my anxiety seemed to be keyed up and on top of that I started feeling like I was on the verge of tears or in tears, for several days in a row, with no reason. I wasn’t sad about anything, but the littlest things like the idea of a friend coming over was too much to bear. I felt like I had zero control of my emotions and the thought of randomly bursting into tears in front of someone was adding more anxiety. My voice was small and weak. I was totally zonked. And my hair was falling out. From the outside, it looked like depression and anxiety. I felt like I had zero capacity to deal with any of it. In the past, I’ve been able to dig down deep, push throw, slap a smile on my face and fake it (for a short time anyway) if need be. But I felt like I had no reserves.
In the shower one day as I was washing my hair, a huge clump came out in my hands and I burst into tears. It was like the episode of Parenthood when Christina goes out dancing after her first chemo treatment and she runs a hand through her hair and all of the sudden there’s a huge clump in her hand.
Totally unsettling.
While I felt like I was tumbling towards insanity and crumbling before my own very teary eyes, luckily my sweet, thoughtful, level-headed husband got to playing detective.
Since we knew hormones played some role in this, we worked with my functional medicine doctor to do a hormone test.
And it was SO revealing.
It revealed that I had zero progesterone, like NONE.
It also showed that my cortisol was sky high and I was swimming in melatonin (which explained why I could never fall asleep at night and why I was so, so tired).
In a nutshell: I had what’s often referred to as adrenal fatigue.
While you never want to hear a bad diagnosis, it was such a relief to finally have an answer to why I felt this way.
I’ve started taking over-the-counter progesterone cream with bio-identical progesterone (this one) and noticed a HUGE difference almost immediately. (I know, I thought these things wouldn’t be a topic until my 50s either!) No more weak voice, my hair is falling out a lot less, and I finally feel more like myself again. I can’t even believe that was me in tears feeling completely hopeless. And that was less than a month ago. It’s almost like an out of body experience looking back at that person, because that person is so not the person I am.
What I was going through was a huge hormonal crash, and it resulted in me feeling completely different in every way. And it’s not just me! I remember this really wonderful post Joanna wrote about her own hormonal crash after weaning her son from breastfeeding. She had the same type of reaction. I can’t believe I didn’t remember it sooner. It was like my body was having withdrawal symptoms from going off of the birth control pill, but the symptoms were much more extreme and varied than I would ever have expected.
BTW: The birth control pill Yasmin contains estrogen and progesterone, which explains why my brain felt so much better on it. Now that I have the progesterone cream I am finally getting that much needed progesterone and I feel completely different.
So, why am I sharing all of this?
Because I am seeing SO many of my friends experience similar things. And we’re all about the same age (in our 30s).
Why have so many of my friends in the past year alone had to start on anti-anxiety and depression meds? Why is my sister also losing her hair?
I really think it’s HORMONES!
The hormone test I took was only $150 + insurance, and it’s a simple saliva test (mine was through Genova Diagnostics), which is super easy to do and non-invasive. I am now taking another “cycle” test which will show how my hormone levels change during different days of my cycle. I didn’t know this, but the variation in hormone levels is huge day-to-day. And we go through this variation every month!
I wanted to share and urge anyone dealing with similar things to consider getting your hormones checked, in case it is a factor or the cause of what you are going through.
I am not saying that all cases of anxiety or depression would be solved by this, but I have a gut feeling that so many people are mindlessly written prescriptions for those meds before any doctor ever tests hormones or anything for that matter. My doctors never tested anything beyond standard blood-work before I pushed them to do so, and once they tested my hormone levels the answer to this particular part of my medical mystery was blatantly obvious.
Actually I’d love to know, if you’re willing to share, if those of you who have been prescribed anti-anxiety meds or depression meds were ever advised to have your hormone levels or any levels (vitamins, thyroid, etc.) checked before being prescribed.
Also, if you are on those medications and they are working for you, that is wonderful. I am not advising stopping them (that would be dangerous). But I hope that for some it might open up the dialogue to think about possible root-causes of any troubles you might be going through.
If you think this might help someone you know, please do share.
And if you’re in the thick of it right now, know that you are not alone. There is hope. And the answer might be much, much simpler than you can even imagine.
p.s. This podcast is fascinating. Have any of you tried Flo Living?
p.p.s. For those of you trying to get pregnant, having the right hormone levels is SO crucial. If you have low or no progesterone, it makes getting pregnant or keeping a pregnancy very, very difficult. Cortisol also makes it unlikely to conceive, which could explain why many women, after years of trying, finally end up pregnant once they’ve stopped trying. While I’m not on the baby train, if I were, I would totally get my hormone levels checked before going down that road.
p.p.p.s. HUGS!
Photos by FRED MOSER
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Yikes, I am sorry you are going through all this but THANK YOU so much for sharing!!
There are so many of us who often don’t feel well and who suffer from stomach problems, anxiety, or who are constantly sick. If we go to a psychiatrist we get prozac and we go to an internist we get diagnosed with fibromyalgia, irritable bowl syndrome, or some other disorder which is non dispirit and doesn’t have a root cause. No one seems to know why we are sick, and there doesn’t seem to be a good cure.
I am amazed by how much difference diet and over-the-counter supplements have made for you. It gives me lots of hope to know that that there might be some long term answers out there.
Please keep us posted in how you are doing. It really helps to know we aren’t alone.
Lots of love, and I hope you keep feeling better and better!!
Kate
Thank you, Kate!
Hi, I have autoimmune also. The sensitively to light / sounds blurry vision have. Do you have any inner ear issues like ringing or imbalance? My hair came out in globs and the texture changed to dry brittle & awful! I hate it…. I was told lupus. Because I would get fevers after being in the sun. Positive ANA, double stranded DNA… Also low magnesium causes hair loss & I had real low of that and D. You can ask for a vitamin panel & that alone can help w hair. B12 can cause hair loss too & u can get shots now for that. My hair never changed its still thin dry and awful! It’s 70 gone. Use to be super thick shinny and healthy. I hv hashimoyoys too. Hyper. as my ANA is sky high..Well nice to read your story, thanks for sharing!
LR,
I am really sorry that you are going through all that. I know it’s really hard and really frustrating. A lot of what you describe sounds really similar to what Kelly had been going through, and if docs are mentioning Lupus it’s clear that auto-immunity is factor for you as well.
The one thing that helped us was that we didn’t accept Kelly not feeling well as an acceptable. We had to push past lots of doctors who didn’t know how to help before we found doctors who would really find the root cause of her issues. Good docs are hard to find, and even when you find them you have to keep pressing them to keep digging until you are truly healthy!
I wish you the best of luck as you get everything worked out!!
Hi LR. Thank you for sharing and so sorry to hear your struggles with this too. I do take Vit B and Vit D supplements as well (I was chronically low for years in both). I don’t have inner ear issues, but my sweet hubby used to suffer from ear ringing a lot. When I had to go gluten free because of the Hashimoto’s, he went gluten free with me. And miraculously, the ear ringing went away (as did chronic bronchitis — amazing, right?). If you haven’t gone down that path yet, it is a game changer. Before finding out that if you have Hashimotos that you can’t eat gluten, I had started getting fevers after eating all kinds of random foods — healthy foods like avocado and papaya. It would wipe me out for a week. And with Hashimotos, cold weather and hot weather can be triggers for auto-immune reactions. I wonder if that might also explain your fevers after being in the sun? I wish you well!
Hi LR. Thank you for sharing and so sorry to hear your struggles with this too. I do take Vit B and Vit D supplements as well (I was chronically low for years in both). I don’t have inner ear issues, but my sweet hubby used to suffer from ear ringing a lot. When I had to go gluten free because of the Hashimoto’s, he went gluten free with me. And miraculously, the ear ringing went away (as did chronic bronchitis — amazing, right?). If you haven’t gone down that path yet, it is a game changer. Before finding out that if you have Hashimotos that you can’t eat gluten, I had started getting fevers after eating all kinds of random foods — healthy foods like avocado and papaya. It would wipe me out for a week. And with Hashimotos, cold weather and hot weather can be triggers for auto-immune reactions. I wonder if that might also explain your fevers after being in the sun? I wish you well!
Sorry your going thru all this. It’s hard when there’s so many different things happening at once. Hope you continue to feel better and figure out exactly what’s wrong with you.
Thanks so much, it’s truly appreciated!
Wow. I have been following your blog for about a year and am a fan of design, fashion, and Palm Springs. I was diagnosed with Hashimoto’s just over a year ago. Now it seems everywhere I go I meet someone who has a thyroid problem. What the heck is going on!?
I have seen two doctors. I stuck with doctor number two. Neither of them suggested anti-depressants. They both did full blood panels.
I started with a lot of questions like “How do I fix this without taking meds?” “What happened? Why did this happen?” And really I don’t have any clear answers except, “It is a combination of things.” Now I’m on Nature-throid, which has relieved many symptoms and my hormone levels are looking great. Every day I wait for the wall of fatigue to hit and it doesn’t! However, I have not had a period in 4 months (I take Microgestin everyday), my hair is still falling out, and my scalp is a mess (very dry, sensitive, blotchy skin on forehead).
My doctor and I agreed to wait to see if my body is trying to cycle back to a regular period. I had spotting last month, which is a good sign. Plus, I’m feeling good, no cramps, bloating or anything. We are going to see if I start to cycle again and if not we are going to go ahead with the full hormone check.
My doc also suggested I try going gluten free. That’s hard for me to take. I’m only on day three and I hate it already. Yeah, I’m working on an attitude change and today went grocery shopping and realized I can do this. I’m curious to see how I feel after being gluten free for a time. I’m not convinced I have gluten sensitivity since I do not feel bad like you and many others describe after taking gluten in. But my doc explained that while I might not have gluten problems now Hashimoto’s is an immune disease and that can cause gluten allergy over time.
I am also working on bringing resistance training into my work out routines. I used to do interval training every evening but that tapered after this entire thyroid thing hit. I practice yoga too but I think resistance is key for an overall healthy lifestyle.
Reading posts like yours is so helpful. I am reluctant to really tell friends or family because everyone has an opinion and some can be judgmental. Try telling my Italian family that I need gluten free pasta! Yeah, it doesn’t go over well. 😉 Thank you for sharing! Keep on keepin’ on.
Hi Suzy,
I hear you, having to explain and defend to loved ones has been one of the most stressful parts of this for me. You may want to check out Jennifer Esposito’s book Jennifer’s Way, where she shares her Celiac/gluten-free story. It hit home big time for me (she shares her story in some YouTube videos as well).
Great that you are going gluten free and you’re in the midst of the toughest part—that first week. Keep on keepin’ on! It sounds like you have a good doc. And that you are asking the right questions. What kind of doctor are you seeing?
Gluten was the one thing I didn’t think I had a problem with. After stomach problems for years, I realized certain things made me sick (garlic, onions) but I thought bread and pasta were the most gentle on my stomach.
But here’s the thing with Hashimoto’s + why going gluten free is essential: Your body can’t tell the difference between thyroid hormone and gluten (their makeup/DNA code looks very similar). Your body sees them both as foreign invaders, and your immune system attacks them just the same – meaning every time you have gluten, more thyroid tissue will be destroyed. Gluten is also inflammatory, meaning it creates holes in your stomach lining, leading to leaky gut. This is why over time, people develop so many food sensitivities (like me).
It sounds like you are in a really good stable place, so you might be one of the lucky ones who if you make the lifestyle/dietary changes now, you won’t have to go down a rougher road.
I hope you continue to feel well xo!
Would you kindly share the contact info for your functional doctor?
I am in the LA area, and was hoping that you could also share the info re: your functional doctor. I have Hashimoto, and while my symptoms are not as severe as yours, I would love to see a recommended functional doctor. I have hair loss, fatigue and do not sleep well at night. Thank you so much and thank you for sharing your journey with us.