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Getting to the root of my autoimmune symptoms

Sometimes I feel like my whole life is ruled by my autoimmune disease. I can wake up and tell if I’m going to have a good or bad day as far as symptoms go. Sometimes that wakeup happens at 4:30 am, because my joint pain and insomnia are major struggles. Sometimes I can wake up feeling ok but then my reaction to a daily stressor is not “normal” and can send me into an anxiety spiral and even an anxiety attack. I haven’t felt like myself or like a healthy late-30’s person for 2 1/2+ years. I’ve been to doctors (“depression” “age” “stress”…). I’ve had my thyroid tested (“within normal range”). I’ve changed my diet. I’ve taken medications and supplements and made lifestyle changes. And while some of those things have been been like a bandage, giving me temporary relief, it has never truly gone away. So I’ve been trying and trying and trying to get to the root of my autoimmune symptoms. And I wanted to share what I’ve learned and some suspicions that I have regarding their root cause.

Girl's trip to Ojai: Where to stay, eat, shop, and relax in Ojai, CA

First, if you aren’t sure what Hashimoto’s is or aren’t aware of autoimmune illness symptoms, I wrote a post about it here that you might find helpful (especially if you found this post because you are searching for answers regarding your own health issues). I developed Hashimoto’s Thyroiditis after the birth of my first son almost 8 years ago. He was 6 months old before I started to realize what I was experiencing and going through postpartum wasn’t typical. By 8 months postpartum I had a diagnosis and was prescribed medication to treat the hypothyroidism that resulted from my Hashimoto’s (it basically caused my immune system to attack my own thyroid, causing it to stop working). Once I started taking medication many of my symptoms got better, especially the lethargy and sluggishness. But one thing that didn’t go away (and has actually gotten worse in the last 2 1/2 years) was my anxiety, erratic moods, and occasional bouts of depression as a result. So I was given medication for that as well (paxil, which worked but was a bitch to come off of when I was ready and wanted to get pregnant again).

Cut to 6 years later when I had my third son and shortly after any progress I had made came crashing down. It was a really dark time and I suffered from pretty heavy postpartum depression (with a colicky newborn who screamed for months). I was put back on antidepressants (zoloft this time) and I made sure to schedule an IUD insertion at my 6 week postpartum visit because I was certain I could not and did not want to have any more babies. This is important and I’ll talk more about this a little farther down.

I was so sleep deprived and desperate to make it through each day that I did what I needed to survive and push through. This often meant sugar, caffeine, and carbs. I had to go dairy-free during this time (to help with my breastfeeding baby’s colic and reflux) and that was challenging at a time I was already a mess. So I made it up to myself by indulging in more of the foods that weren’t good for me but were free of dairy. It got to a point where I had a habit of making it through segments of the day (like wake up to morning nap, then wakeup to later nap, then wakeup to afternoon nap, then wakeup to bedtime) by treating myself to something sweet each time I survived that portion of the day. I realize looking back that it was an addiction to sugar that I was using to feel better during a really hard time. And I think that’s ok — I’m not judging myself. But I think it set up a really bad habit of feeling like I “earned” a treat that I’m still trying to conquer 2 years later. It also caused my gut health to plummet and created an environment in my body that set me up for other health issues (yeast infections, mood issues, poor sleep, and more).

By the time we moved to Ohio some of my symptoms had gone into overdrive. I had numbness in my fingers that went from occasional tingling in my finger tips to numbness from my elbow or shoulder down. I couldn’t lift a gallon of milk out of the refrigerator. I couldn’t lift my kid into his crib. I wasn’t sleeping. My mood was on a constant rollercoaster ride that never came to an end. I was having horrific periods, adult acne, body aches and joint pain, brain fog, fatigue, irritability, and panic attacks. Those were only the absolute worst symptoms. I finally went to a naturopath because I hadn’t gotten any answers from endocrinologists or other western medicine doctors in the past beyond “take levothyroxine to treat the thyroid.”

This is the first time in 7 years that I learned that my diet was important to my autoimmune disease and that things like sugar and gluten could be  contributing to my symptoms. I realize some people might be like “duh! of course it does.” But when you’re a new mom or the mom of a colicky baby when you get a diagnosis like this you really need your doctor to spell things out for you. I didn’t have the time to figure things out on my own. I didn’t have the brain power to do my own research. I haven’t been able to read a book in years because 1. holding a book is hard when your hands are numb, 2. retaining information is hard when your brain is foggy, and 3. I would fall asleep anytime I tried. I now listen to audiobooks instead, which works much better for me, but back then I couldn’t even wrap my head around doing that. So when my naturopath told me to try cutting sugar and gluten I finally felt like someone was trying to understand and help me understand what I was going through.

I cut sugar way down and cut gluten almost entirely. And it did help me a lot. My aches and joint pain improved and my moods and sleep were also improved. But slowly my symptoms would come back. I suspected that other foods were causing inflammation in my body and maybe other things as well. That’s when I started going clean with our household products and my beauty and skincare products as well (more on that here.) And that helped a bit too. And then my symptoms would slowly come back. I decided to investigate further and see if something else could also be contributing to or causing my symptom flare ups.

After a lot of research I suspected two things: that my IUD was causing me major issues (this deserves a whole post in and of itself and I promise there will be one) and that I had other food triggers besides gluten. I have wanted my IUD out for a while but getting to yet another doctor was hard to prioritize during a time when we’ve been visiting doctors for our sons (therapy to help one with anxiety related challenges and frequent follow-up doctor visits for another after a scary hypoglycemia incident that left my middle son in the ICU for two nights). And then once I did get to my OBGYN we discovered my IUD was stuck and I would need to do an outpatient procedure at the hospital in order to have it removed. Insurance issues followed and cut to months later and I’m still trying to get it out. So first I decided to do EverlyWell’s Food Sensitivity Test to see if I could get some answers regarding dietary triggers. The answers I got were eye-opening and super helpful in giving me a starting point in making dietary changes.

EverlyWell Food Sensitivity Test Results and What I learned

Food Sensitivity & Inflammation Triggers

I had highly reactive results to the following foods: cheddar cheese, clam, egg whites, cow’s milk, mushrooms, peanut, soybean, yeast, and yogurt. I had moderately reactive results to cottage cheese, mozzarella cheese, and egg yolk. And I had lower reactivity to quite a few things, a few of which were pretty surprising: barley, bay leaf, chia seed (!?), cinnamon (sad face), cola, dill, gluten (this may have registered lower because I haven’t eaten much gluten for months), kelp, oregano, pear, white potato, tarragon, black tea, walnut, watermelon, and wheat. So based on these results I have decided to first remove the following foods from my diet completely for a few months (and then reintroduce one by one to see how I react and whether I truly need to avoid them for good):

  • dairy (cheese, milk, yogurt especially)
  • soy (something I already avoid for the most part)
  • egg
  • peanut
  • yeast
  • wheat and gluten (which I was already doing)
  • chia seed
  • cinnamon
  • cola (I also rarely have this)

IUD Issues

Now back to what I now suspect has been the biggest cause of my health issues over the last 2 1/2 years: my Paraguard copper IUD. I choose this method of birth control because I was pretty sure we were done having babies and I knew I did not want a surprise pregnancy while I was getting through Quincy’s colic and reflux and my PPD. Frankly, we were mostly practicing abstinence because three-kids-colicky-baby-PPD-fog, but still… I didn’t want to risk it and was hoping that no sex wouldn’t be a permanent birth control method for us (and my husband was really hoping 😉 ). We weren’t quite ready for a vasectomy yet, just in case. I didn’t want anything with hormones because my body was already so affected by my thyroid and hormonal issues. After discussing my options with my doctor and confirming that the worst side effects reported are heavy periods for the first 6-12 months, I choose the Paraguard. I should have done more research on my own, but again: colicky newborn, three kids, PPD, survival mode.

I was nursing so I didn’t have a period until Quincy was around 12 months old (and I got the Paraguard when he was around 2 1/2 months old), so I didn’t have those “heavy periods” for a while. So I attributed things I was feeling — joint pain, insomnia, anxiety, brain fog, depression, inability to lose any weight, fatigue, numbness in hands and feet, back pain and hip pain, restless leg syndrome, and lots more (I was having so many new random issues that I started keeping a list on my phone and below is a screenshot of that list) — to my Hashimoto’s and thyroid, plus age and having a new baby. But instead of gradually getting better it just kept getting worse. And some of the symptoms like the panic attacks, noise sensitivity, restless leg, numbness in hands and feet, etc. were brand new and had never been problems with my Hashimoto’s before. After researching my symptoms I realized that my copper IUD was the culprit! I’ve yet to have a medical doctor confirm this but I know it in my gut to be true. Once I came to this realization I started doing even more research and learned that women with autoimmune disease should never get an IUD (and really should avoid medical devices and implants whenever possible because it is a foreign body being introduced and will often trigger autoimmune flare ups since your body already attacks itself and introducing something like an IUD can only exacerbate that. Again, every doctor I’ve seen in the last 7 years has been well aware of my autoimmune and thyroid issues and I’ve never once been counseled on this. My OB, who I trusted and loved and delivered two of my three babies and is known as a midwife of OBGYN in her approach and mindset, didn’t mention anything, nor did my endocrinologist. The first person who raised any flags at all was my Naturopath.

my symptoms that appeared after I got the Paraguard copper IUD

In addition to IUDs being a problem in general for people with autoimmune issues, copper IUDs specifically can lead to copper toxicity in some people. While most of my research has found that Western medicine does not believe that copper IUDs can cause copper toxicity because the amount of copper released into the body is too low, I have also found a large number of women out there who are all reporting the same type of symptoms as me. And many of those are the same symptoms that show up for copper toxicity:

Signs of copper toxicity that you may notice with Paraguard copper IUD

I had all of those symptoms, plus many of the ones listed under zinc deficiency (and we did discover a zinc deficiency as well as a Vitamin D deficiency about 18 months ago. And yet, I couldn’t find one doctor (in person or online) who wasn’t totally skeptical and dismissive of the idea that IUDs are causing these issues and that copper toxicity could be a problem. I’m not that crunchy mom who doesn’t believe in any western medicine (not judging, just giving  you an idea of where I come from and how I approach western medicine). I give my kids ibuprofen, we vaccinate, I’ve gotten a flu shot every year since law school. But I also know that I have struggled with health issues since the birth of my first son that have gone unrecognized, been dismissed, and have not been well-explained to me by doctors. I know now that autoimmune illness is still very misunderstood and thyroid treatments are outdated and overgeneralized based on a “normal range” that may not work for everyone. I have been helped by alternative medicines and treatments and I refuse to dismiss those as hokey or with an eye roll. I have learned to be a health advocate for myself because clearly no one else will. And I’ve realized that women are often dismissed as irrational or depressed (if you’re a woman of color this is even more common). Heart attacks are dismissed as anxiety, for example. And IUD issues seem to be attributed to things like age (I’m 39) or being in your head. But the more I read other women’s stories about how they felt like they turned into a different person after getting the copper IUD, the more I realized that I wasn’t alone. I believe the Paraguard copper IUD is making many women sick. I believe that we can get better and much of this improvement will come from alternative medicine treatments. And I believe our doctors need to start listening to us and do better by us.

If a woman in a mom’s group or a friend says they are thinking about getting an IUD I immediately tell them my experience. I know many women have had one and loved their experience. They are convenient for sure. But I’ve lost the last 2 1/2 years of good health and struggled and suffered and in turn so has my family. These issues are so misunderstood and they can impact your marriage, your kids, your job, and other relationships. I forget to pay bills, to renew my auto registration, to make appointments, miss deadlines, etc. because of my complete brain fog and fatigue. I used to be a highly functional and productive person. Now I can’t trust myself to do simple tasks some days. My short term memory is shit. I have to write everything down. I’m extremely disorganized. I’m a hot mess. It is not worth it.

So, I’m currently waiting to see a new OBGYN who has privileges at a hospital who is also in my insurance company’s network (my old OB was in network but the hospital where she has privileges was not — tell me how that makes any sense whatsoever!?). I’m hopeful that she will schedule my procedure quickly so that I can begin to detox from the copper, to heal from the IUD embedding itself in my uterus, and to get back to my old self in the coming months. UPDATE: I hit ‘publish’ on this post from my new OBGYN’s waiting room and shortly after she was successful at dislodging my stuck IUD. It was excruciating but worth it. I’ll share a post-IUD update in a couple of months!

My husband is scheduled for a vasectomy, which is a much less invasive procedure with no side effects and is completely reversible — so why aren’t we using this method more often vs. making women to suffer through the side effects of birth control or, in the alternative, an unwanted pregnancy? If men were the ones being implanted with devices that were then making them sick, I truly believe they would be taken more seriously.

If you read this whole post, bravo to you. I hope you find it helpful. Please share it with women’s groups, friends, and your fellow moms if you think it will help them too. Here are a few other resources and things I’d like to share:

Watch this documentary for more on the dangers of medical devices and implants: The Bleeding Edge on Netflix.

Join my Battlefield Motherhood group on Facebook for other non-judgy mom support on all things woman and motherhood.

See this Facebook support group for other women struggling with their copper IUDs.

Slightly off topic but still women’s health focused, this thread by Design Mom (Gabby Blair) is a must-read and makes some fantastic points that I think fall in line with my experience with my own healthcare services. Women are simply not given the care we should be. In this same arena, I watched Reversing Roe (also on Netflix) last night and it was a fascinating history on the politics surrounding abortion (it wasn’t always such a hot button political issue and actually used to be supported by republicans until the Alt Right movement decided to use Christian Evangelicals to push forward their own agendas (it is easier to gain power calling yourself a Christian than it is a racist) and abortion took a central role in conservative politics. It is a really interesting watch whether you are pro-choice or anti-choice and might help both sides to find some common ground.

Also, EverlyWell is offering my readers a 15% discount on all orders with code CHANDRA. I have used their thyroid test, food sensitivity test, and plan to also do their Women’s Health test once I get my IUD removed to check on the progress of my overall health. I have found them to be very helpful in being proactive in my own health.

This post is not intended to give medical advice, but to share my own health experience. Take this information to do your own research and then arm yourself with that knowledge when talking to your doctor. You know your body more than anyone else and have to be an advocate for YOU.

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