One Mom’s Journey With Hashimoto’s (which is more common than you think)

Most people don’t talk about Hashimoto’s Disease. There’s a lot we don’t talk about, like how being a mom is hard.  No one understands just how hard until they go through it.  Anyone that isn’t still knee-deep in poopy diapers and sleep deprivation is probably experiencing at least partial amnesia and can’t remember how hard it was not that long ago. But some people have a harder time than others. I firmly believe that every woman goes through something tough when it comes to having a baby. You might be horribly sick for months while you’re pregnant, or you might have a really tough labor and delivery. Or you might have a sh*tty postpartum phase.

I had an amazing pregnancy. I LOVED being pregnant. But I had a pretty difficult 26 hour labor, and a very challenging postpartum period.  It took me at least 5 months to realize what I was experiencing postpartum wasn’t “normal.”  It took me two more months to see a professional about what I was going through. My son Charlie was 18 months old before I felt like my old self and started to forgive myself (and everyone around me) for what I had been through.  So I thought if just one new mom read my story and felt less bad about what they were going through, it was worth telling.

The Postpartum Follow-up Appointment

Theoretically, your six-week OBGYN follow-up visit is supposed to detect if you’re suffering from postpartum depression, as well as other health issues. For me, it was basically a vagina check-up and an all-clear for sex (as IF!)  No one asked me how I was feeling, and frankly I don’t even know if I was feeling bad yet. So my first lesson learned from this experience: women should have a 3 or 4 month postpartum OBGYN follow-up visit. Seriously. It should be routine.

Anxiety and Fear

I can’t remember when it all started for me, but I do remember that my husband was supposed to go to a party with some friends and I was unreasonably anxious and overwhelmed at the prospect of being left home by myself with my baby for several hours. He must have been around two months old. It started like that: a building anxiety at little things. The thought of dealing with a  diaper while we weren’t at home made me a nervous wreck. I hated going anywhere because I was nervous about someone waking him up while we were out on a walk or coughing on him or touching him. And we had stressful breastfeeding issues, so forget about a major outing where he would have to nurse while we were out. That was a nightmare for me. Packing the diaper bag to leave the house was overwhelming, so packing for our first trip on an airplane was almost debilitating. My anxiety and feelings of being overwhelmed were normal and understandable to me, but no one around me understood. People took my feelings personally. I felt judged and alone. I didn’t have any mom friends where I lived to lean on, and my mom friends in other parts of the country that I would talk to seemed like they were doing so much better than me. I also had been unable to lose any of my baby weight. In fact, after losing a little bit in the very beginning, I was actually gaining weight. And I was eating relatively healthy foods (though often because breastfeeding makes you SO hungry) and I was walking a lot with my baby.

Finally An Answer

When my son was around 6 months old, I started seeing a personal trainer for the first time in my life because I was so sick of gaining weight and feeling fat and hating myself. I went at it pretty hard for a couple of weeks, and then my body went into shock. I developed a fever and felt like I had the flu, but I didn’t.  That lasted for two weeks with no change, so I finally went to the doctor.  A two-week fever was what finally made me see a professional – thank goodness for that fever!  The doctor asked me my symptoms and I started listing them off:  exhaustion, sluggish, aches & pains, extreme lethargy (some days I couldn’t get off the couch for hours, which is not easy with a 6 month old), depression, weight gain…as I listed them off a light bulb started to form.  Then the doctor said “I want to check your thyroid.”  As soon as he said it I realized I had hypothyroidism. Actually, as I would find out with my official diagnosis, I had Hashimoto’s Thyroiditis.

What is Hashimoto’s

Hashimoto’s disease is a condition in which your immune system attacks your thyroid, a small gland at the base of your neck below your Adam’s apple. The thyroid gland is part of your endocrine system, which produces hormones that coordinate many of your body’s functions. It is the powerhouse for your entire body and if it gets sick, you get very very sick as well. Inflammation from Hashimoto’s disease, also known as chronic lymphocytic thyroiditis, often leads to an under-active thyroid gland (hypothyroidism). Hashimoto’s disease is the most common cause of hypothyroidism in the United States. It primarily affects middle-aged women, and 10% of postpartum women develop Hashimoto’s disease.

My struggle with autoimmune and thyroid disease is directly tied to my motherhood. That in itself is hard, because the most wonderful thing that ever happened to me in my life (becoming a mother) is aIso the thing that led to a major physical and mental health deterioration (Hashimoto’s). I developed Hashimoto’s after I had my first baby — my difficult labor and delivery was likely the stress trigger that allowed the Hashimoto’s to take over my body. Looking back to the time of my diagnosis, I didn’t have a clue about my disease. I thought one of the symptoms (postpartum depression) was the toughest part at the time. I had no idea that the depression and anxiety would come back and persist and that I would struggle with so many more symptoms because I never treated the Hashimoto’s, I only dealt with the resulting hypothyroidism and replaced my thyroid hormone per my doctor’s instruction. But honestly, I had no idea that there was more to do because my doctors never told me otherwise and I didn’t realize there were answers out there to look for. I thought that as long as my thyroid levels were within range that I was good. But I never felt great. Maybe I didn’t feel as terrible as I had been, but I never felt GOOD.

Cut to a couple of years later and we were ready to have another baby. I struggled with infertility for almost a year and had a miscarriage as well. I then became pregnant with my second son, and 8 months after he was born was surprised with a third pregnancy (another boy!). My third son’s birth was traumatic and he developed colic and severe infant reflux. My health deteriorated rapidly. I had postpartum depression again. I also had a lot of new symptoms and random things happening to me, so I made a list on my phone over time of all of the symptoms I was having.

This was my list:

• Racing heart
• Noise intolerance (like, severe and panic attack inducing)
• Tunnel vision & blurred vision
• Ringing in ears
• Anxiety/Panic attacks
• creepy crawly feeling up my back and neck
• Achy joints
• Brain fog
• Irritability/Mood
• Extremely heavy periods (like needing to change tampon and backup pad every 1-2 hours for days)
• Severe PMS and depression a week before and into my period
• Insomnia
• Tired/sluggish/lethargic
• Fibromyalgia-like chronic pain
• Weight gain/inability to lose ANY baby weight
• Bruise easily
• Water retention/swelling
• peeling nails
• increased skin tags/moles
• extremely dry skin
• Swollen hands/feet & numbness in hands and arms
• Repeated sinus issues
• Snoring
• Restless leg

I went to my doctor (who was new to me due to new insurance) and had a gamut of tests run. I was shocked when my thyroid levels were described as “within normal range.”  It made no sense to me, since I was feeling terrible and very similar in many ways to how I did right before my diagnosis. I was living in survival mode for almost two years and barely surviving. Some days I thought I was dying and some days I wanted to die just to not feel so bad anymore.

My doctor didn’t seem to take my concerns seriously and said my levels were normal and sent me on my way. But I knew what I was feeling wasn’t normal, so I started doing my own research. Seven years after receiving a Hashimoto’s Thyroiditis and Hypothyroidism diagnosis, I finally figured out that taking synthroid wasn’t actually treating my Hashimoto’s at all — it was only treating my Hypothyroidism. I never understood that Hashimoto’s is an AUTOIMMUNE disease and Hypothyroidism is the result of your body attacking your thyroid. You have to treat the thyroid so your body has enough thyroid hormone, but you also have to take steps to treat the Hashimoto’s, or your body will continue to attack itself in other ways. This realization was like a face palm and a lightbulb ‘ah ha” moment at the same time. Why didn’t I know this sooner!? Why hadn’t my doctor explained that? Why didn’t I think to look into it more myself? Once I did start looking and researching and educating myself I realized so many other people were also suffering from this, but that many were also treating it and going into remission from it due to diet changes, supplements, stress-relieving activities like yoga and massage, and medication changes. So I decided that I was going to surround myself with medical professionals that I trusted and that really listened to me.

My Treatment Plan

The first thing I did was find a good and highly recommended naturopath and functional medicine family doctor for myself and my family.

What I loved about seeing a naturopath was basically everything about the experience. I spent two hours talking to her about my symptoms. She asked questions that showed me she really knew what she was talking about when it came to Hashimoto’s and my answers shed a lot of light on what was going on in my body. After our first appointment together, we formed a plan:

• Test my thyroid to get a new idea of what my levels were. Since she doesn’t have access to a lab, I could either be referred to one or I could do an at-home test. I chose to do an at home test through EverlyWell. I used their Thyroid Function test, which checked my TSH, T4, T3, and TPO antibodies (which often isn’t checked when DRs do thyroid tests and is what shows Hashimoto’s). This test was easy to do with a finger prick at home and it only costs $159. My results showed that my T4 was in normal range, that I was converting T3 well, my TSH was elevated but still technically within normal range, and that I had  elevated TPO antibodies present.
• Take a good look at my gut health. I feel like “leaky gut” has become all the rage, like the new “gluten-free” thing to do. But honestly, it is a real problem for many people (as is gluten) and when we looked at how often I was getting sick, how much sugar I was eating, if yeast seemed to be present in my body (which uses sugar for food to get out of control and take over the good bacteria in your gut). And I wasn’t as consistent about taking probiotics myself as I was in making sure my kids did. Also, my stomach was so bloated and distended, like I was 5 months pregnant still, which is another big indicator something is happening in your gut that isn’t good.
• Significantly change my diet.
  • Removing gluten: I used December to get acquainted with the idea of going gluten-free — researching products that would make good replacements when I needed something like pasta or pizza or a cookie. I started pinning recipe and meal ideas. I started cutting it gradually. And then on Jan. 1 I started a Whole30 to jumpstart my diet changes. For people with Hashimoto’s it is really important to remove gluten from your diet, even if you don’t have Celiacs or a traditional gluten sensitivity. Here is a great article to read more about this. Basically, it is believed that TPO antibodies and even some thyroid proteins and a protein found in gluten have a similar molecular makeup, so when you put gluten in your body and you are autoimmune, your body reacts with an autoimmune response, which makes you feel sick. I am just starting to understand it myself, and I’m not a doctor or scientist so I encourage you to do your own research from reputable sources and talk to your own doctor. For me, it was worth it to try. And I’ve seen a huge improvement.
  • Removing dairy: Dairy is thought to be another food that does not help people with autoimmune disease, especially if it contains casein because It is a high inflammatory food. I have to admit that I haven’t done the best with this so far, but I try. My main focus is staying gluten-free. But my goal is to get back on track with this in the next couple weeks. Even when I’m dairy-free, I eat goat cheese and use Kerrygold Irish butter and cheese (made from grass-fed dairy cows).
  • Removing sugar: sugar is a hard one for me, but since I did the Whole30 I’ve stopped having cravings and am satisfied with dates or a small piece of dark chocolate. I stopped drinking soda. And when I want to have a drink with friends, I allow myself a glass or two of wine or cider (can’t have beer because it has gluten 🙁 ) Regulating my blood sugar is really important based on my labs and symptoms that are indicative of inflammation.
• Reduce stress and increase self-care. Stress is a huge trigger for autoimmune flare ups. It’s a no brainer that reducing stress can help you feel better, but putting a plan into action is a different story. I’ve put a reminder into my phone to do 10 minutes of yoga each morning (I’ve yet to actually do it), I bought some yoga classes and haven’t yet gone to one. But I am meditating daily (usually before I fall asleep), try to take 10-15 minutes for myself to shower or take a bath, to have a quiet cup of coffee, or anything that makes me feel calmer in my mind. Epsom salt baths are huge (magnesium really helps!) so I buy a big bulk bag for much cheaper on Amazon and add my own essential oils. I’d love to do one every couple of days but I’m lucky if I get one weekly.
• Consider other medications. If you take thyroid medicine, looking at which you are on is important. There is Levothyroxine (which is synthetic T4) and Armour (which is desiccated pig thyroid gland). Armour contains both T4 and T3, so if you aren’t converting T3 well, then Armour might be the better fit for you. If you are converting well (like I am) then levothyroxine might be better since you don’t need the T3. However, there are also different levothyroxines out there and some can make you feel worse rather than better (something else I never really understood). If you use generic levothyroxine, you don’t know what you are getting as far as the additives and fillers. Gluten and corn are commonly found in generic levothyroxine, and many people who need it are sensitive or intolerant to gluten and corn. Makes no sense right? And many of us only have insurance coverage for generic drugs which means unless we want to pay out of pocket the drug we need and are given might actually be making us feel bad. Another option is Tirosint, which is also synthetic T4 but is super clean and only contains  four ingredients. I took this when I was first diagnosed and did really well on it. When my insurance would no longer cover it I was switched to regular Levothyroxine. I’m in the process of switching back and have found that you can sometimes get coupons from the manufacturers website or discount prescription cards in you need assistance paying for it.
• Take supplements to help support my thyroid: Based on my specific levels and symptoms (so these might not be the right fit for you — check with your doctor first) I started taking the following:
  • Fibro-Ease Multi
  • Berberine Complex: supports immunity and gastrointestinal health by balancing intestinal flora
  • Vitamin D3 (between 5,ooo and 10,000 IUs a day — I was deficient in Vitamin D. Now that I’ve been taking 10,000 for a couple months, I’m going down to 5,000 unless I start to feel like I’m getting sick and then I’m supposed to go back up to 10,000). Also make sure it is gluten-free, like this one.
  • Thyroid Support: I actually started taking this on my own and felt like it was helping me. However, it has an ingredient that my doctor said is known to increase anxiety in some people (Tyrosine) so I discontinued it for a bit to see if I notice an improvement, plus my other supplements are now providing the same support without that ingredient. But it is worth checking out if you need thyroid support. It helps with metabolism, energy, and focus.
  • a daily Probiotic: choose one with a higher number of different strains of bacteria and make sure it is dairy, soy, and gluten free, like this one.

At the end of the day, I’m just one person with Hashimoto’s who went way too long being a passive patient and not feeling good. I was tired of not having energy, patience, and happy days with my kids. Sometimes I feel like that wasted a lot of time of this motherhood phase with babies and it makes me sad, and a little angry too. I’m not trying to knock all western medicine doctors and physicians — most are wonderful, but I do think that there is a traditional way of doing things that doesn’t work for everyone. If you are a passive Hashimoto’s patient I highly recommend you do your own research. This book is a great resource. I also love this book and this cookbook and the podcast also by the authors. The conventional model of Hashimoto’s treatment is based only on lowering your TSH with whatever thyroid medication your insurance plan or doctor prefers. Once TSH is within “normal” range, this model has nothing more to offer except to check your TSH once a year. That was the treatment I got for so long as well. It takes time and effort, but the thyroid patient who wants to feel better needs to really learn and gain a better understanding of Hashimoto’s. For me, that has been the key to taking control of my health. I still have a long way to go, but I’m feeling so much better already. Knowledge is power and I now have the power when it comes to my health and well-being. This is by no means meant to be medical advice — you should always ask your doctor before starting or trying anything new. I’m just sharing my experience in case you are like I was: feeling really sick and not knowing why or feeling bad and being dismissed after your TSH comes back within “normal” range. Or if you’re feeling some of those symptoms that I listed just go to your doctor and ask to have your thyroid checked. Hashimotos and thyroid disease are so so common among women.

Do you have Hashimoto’s or have a loved one who does? Have you found anything that works well for you?