This post has been a long time coming, and after doing an Instagram Live a few weeks ago where I talked all about my story since my diagnosis in 2014, I finally sat down to write it! I'm going to try to break this down into sections for easy reading, but if there's anything I've left out or that you would like more information on, please feel free to ask in the comments here or on Instagram!
It's long, but there's a lot of information here, and I hope you find it helpful!
Initial symptoms:
I first tuned in to the fact that something wasn't right in September of 2014. I had a persistent abdominal pain on my right side that I couldn't get to go away, no matter what I tried. I explored all of the options that Western medicine had to offer: a GI consult, an ultrasound, endoscopy, colonoscopy, etc etc. Nobody could give me any answers, and after reassuring me that they didn't see anything worth worrying about (I was afraid of something like a structural abnormality or a growth), they sent me home with the explanation of "it must just be IBS."
I was having ongoing pain, so obviously something wasn't right, and I decided to seek out another opinion from a naturopath. I was having other symptoms at the time as well, but didn't realize it until she started asking me some specific questions at my first visit. These symptoms included lots of brain fog, fatigue, lack of excitement/passion for life, cold hands and feet, and amenorrhea (lack of a period). She ran a bundle of lab tests, including a breath test, and then I waited.
About a week later I got all of the results, which showed that I had a positive breath test for SIBO (small intestinal bacterial overgrowth, which I had never heard of) and Hashimoto's antibodies above the testable lab limit of 900. I wasn't surprised about the SIBO once I learned what it was, because it explained the bloating, gas, pain, and constipation that I was experiencing, but thyroid issues weren't even on my radar! I also tested positive for H Pylori.
This kind of bloat was a daily occurrence.
Initial recommendations:
The first thing that my ND did was prescribe a round of Rifaximin + Metronidazole for the SIBO, followed by a low dose of Erythromycin as a prokinetic for 3 months. She also recommended a low FODMAP diet both during and after treatment, but that's all she really changed from my diet. Herbal antibiotics are also an option for treating SIBO (you can find more info about this on siboinfo.com) but I didn't know that at the time. I also didn't know that it is generally recommended NOT to eat a low FODMAP diet during antibiotics, because this is associated with a better eradication of the bacteria.
I was eating a loosely paleo diet already, but up until that point, would still have gluten once a week or so, at an event, date night, etc, which I stopped doing immediately because it is a common trigger in Hashimoto's. She also recommended a thyroid support supplement and an adrenal support supplement, as my cortisol was borderline out of balance. Her hope was that by treating the SIBO first, the other things would regulate as well. She did not treat the H Pylori at that time.
My take on diet:
My diagnosis came in December of 2014, and I decided that in January of 2015 I was going to go on the elimination phase of the Autoimmune Protocol, which I had been using with patients with great success for at least a year. I also did some food sensitivity testing using the LEAP/MRT test, and continued with a low FODMAP diet. When I overlaid all of these protocols, I was left with a VERY narrow food list (at one point less than 10 foods), but I was determined. This is one thing that I do differently in my practice now, as I have found that an overly restrictive diet is often counterproductive, but I won't get into that here. I launched into the protocol with gusto and started the two antibiotics for SIBO at the same time.
I followed this protocol for 3 months, during which I also moved across the country from Seattle to Austin. I had no noticeable improvement in my bloating, gas, or pain, but at the three month mark I did go get my Hashimoto's antibodies tested, and they had come down to around 700, which I was proud of! At that point I decided to go ahead and start to bring some foods back in. I knew that to stay true to the AIP protocol, I should wait until my antibodies were at goal (<35), but the compounded limitations of the three diets were wearing on me. I began cautiously reintroducing foods with no noticeable consequences.
Life happened:
Of course, as soon as I established care with a new ND in Austin (who put me on a maca supplement to try to help me regain my period, unsuccessfully), my husband and I moved across the country again. This time we moved to San Diego, where I needed to establish care with a new practitioner once again. I started working with a naturopath who decided to re-treat me for SIBO, as well as treat the H Pylori. She also ran a stool test which showed an overgrowth of a different bacteria, so she decided to treat that as well, with the mentality "let's just wipe everything out and then rebuild." This was a (negative) turning point in my health, because I was on 5 antibiotics over the course of 4 weeks, and I just don't think my system could bounce back from it. However, I was so desperate for any kind of relief from my symptoms at that point that I didn't even question it.
There were a few positive things that came out of my time with this ND though. She discovered that I have a homozygous 677T MTHFR gene mutation, which means that my methylation capacity is around 30%. Methylation affects everything, but in particular, detoxification, so I started supplementing with methylated B vitamins (MethylGuard Plus by Thorne) as well as doing things to support my liver, like castor oil packs (I have shared about this on Instagram in my "getting well" story highlight, but can do a post on it too if folks are interested!). She also tested for various other autoimmune conditions, and I showed up with some Scleroderma antibodies too. I did undergo a thorough workup at the Mayo Clinic around this same time for both the Scleroderma and my ongoing digestive issues, but they didn't have any answers for me either.
Waiting for a CT scan at the Mayo Clinic, where I spent a week and a half doing every kind of test imaginable to try and figure it all out.
However, I was still having extensive bloating, pain, and gas, my antibody numbers weren't moving, my thyroid was still sluggish, and my period was still MIA. My ND wasn't sure where to go next, and wanted to continue to wait it out and do stool tests every few months to see if things were changing. I wanted to be more proactive than that, so I sought out a new naturopath once again. (Moral of the story: don't be afraid to seek out a new doctor if yours isn't supporting you the way that you need!)
Finally, some progress:
I started working with a new ND in November of 2016. She did a fresh batch of lab work (which I'm always a fan of), including some testing for underlying viral infections and different genetic mutations. A few things cropped up: I tested positive for both Epstein Barr (which has a high correlation with Hashimoto's) and Cytomegalovirus. The testing also revealed that I have some genetic SNP's (single nucleotide polymorphisms) for Vitamin D and Nitric Oxide processing. Low vitamin D is associated with a myriad of health concerns, including autoimmunity, and low nitric oxide is associated with cardiovascular issues and for me in particular, brain fog. (This test also revealed that I am slow to process sulfites, which is why alcohol always gives me a headache. This is also correlated to histamine intolerance, so I was on a low histamine diet for several weeks until I was able to get this system up to speed again with some strategic supplementation.)
Treatment plan:
With this new information, I increased my dose of Vitamin D and started a supplement that is a precursor to nitric oxide. Immediately I noticed an improvement in my brain fog! I also agreed to bump up my dose of compounded T3, which I had started a few months prior. My levels were borderline, and since thyroid is interwoven with other hormone systems AND digestion, we decided to be a little more aggressive. After about 4 years without a period, I also decided to start supplementing bio-identical progesterone at her recommendation. This approach isn't for everyone, but it was what my body needed (all of my hormone levels were postmenopausal, and I was only 28). Last but not least, I also increased my prescription of Low Dose Naltrexone, which acts as both a prokinetic (to prevent a SIBO relapse) as well as an immune system modulator. (More info on that here.)
In response to the viral infections, I also started an antiviral protocol. I used this colloidal silver (1 tbsp TID, this is also great when you feel like you're getting sick!), this monolaurin (2 capsules TID), Artecin by Thorne (1 BID), and started doing IV therapy (Vitamin C and H2O2, one of each per week). All of this was targeting the underlying viral infections, which were continuing to trigger my Hashimoto's, and subsequently, my digestive issues. I believe this is one of the factors that helped me reach a turning point in my health.
There were a few other key supplements that I was already using that I continued:
-L Glutamine by Thorne, 1 scoop AM/PM on empty stomach with water; this is one of my most recommended supplements for healing the gut!
-MegaSporeBiotic, 2 capsules daily with breakfast (this one has been a GAME CHANGER for my gut health and I recommend it to everyone with gut issues // you can order this from me directly through the contact form on my website)
-FloraSport by Thorne, 2 capsules in AM on empty stomach; I tried about a dozen probiotics before finding the ones that work for me
-MBC by Systemic Formulas, 1-2 capsules at bedtime on an empty stomach (this is a practitioner only brand, you can order this from me directly through the contact form on my website)
-Multivitamin Elite by Thorne, to make sure my nutrition intake was covered while I was on a super restricted diet
-digestive enzymes and HCL to aid in digestion (there are differing opinions about the use of digestive enzymes, but I have found them helpful!)
-NAC for liver support
And a few that I added:
-SAT by Thorne, for additional liver support
-Meriva by Thorne, to reduce inflammation
-Berberine, to help prevent a SIBO relapse and support blood sugar balance
-Moducare, to reduce Hashimoto's antibodies
-Theanine, to decrease anxiety, which is common with Hashimoto's
Progress:
I didn't notice a difference immediately, but after a couple of months, I realized that my bloating wasn't as pronounced, and there were days when I didn't really notice the abdominal pain. At my first follow up about 3 months later, we did lab work that showed that my Hashimoto's antibodies had come down to around 500! We did not re-test the viruses at that time. Since things were moving along, we kept with the same protocol.
Since then, my protocol has stayed pretty much the same. I went to Europe for my 5th anniversary in April of 2017 and ate pretty everything except gluten while I was away. I had dairy almost every day, some gluten free grains, and definitely indulged in the gelato! I did take all of my supplements with me (which took up about 1/4 of my backpack, hah), and when I came back, I was happy to find that my numbers hadn't regressed at all. I also decreased the frequency of my IV's to twice per month instead of weekly, and added in acupuncture. I FINALLY got my mercury amalgam fillings out, which I think definitely made a difference, because my numbers had stalled for about 6 months and after that, they dropped another 200 points! I also bumped my thyroid dose up one more time to what we have discovered is my optimal dose, and slowly but surely, my periods are getting back on track.
The key thing to note here is that I wasn't treating JUST the Hashi or JUST the SIBO, but rather addressing all of the body systems that weren't quite up to speed. The body is a cohesive unit, and if something is out of balance, something else will pay the toll. As I addressed my body from a holistic perspective, everything started to improve.
A little more on IV therapy:
I get a lot of questions on IV's, and it's something I try to share about on my Instagram on a regular basis. In short, both the Vitamin C and the Hydrogen Peroxide IV's that I do are targeting the underlying viral infections, but they work in slightly different ways. The H2O2 converts to oxygen and water in the bloodstream, and as the oxygen works its way through the body, it helps to eradicate any infections that are anaerobic (aka live without oxygen). The Vitamin C IV is 100% bioavailable, and because it goes directly into the bloodstream (as opposed to being digested and then absorbed), it is able to much more effectively reach all of the tissues in the body, where it acts as an antioxidant and helps to reduce oxidative stress. It also targets infections and is frequently used in cancer treatment as well.
I have not experienced any major side effects from IV therapy. If the drip is too fast, the Vit C can cause nausea, and the H2O2 can cause some achey feelings in the arm and shoulder similar to the feeling of a sore muscle, but my tolerance to both has significantly increased as I have continued to use them. There is no "down time" afterwards, and I get right back to normal life immediately.
There's not a ton of research on these because they are much more of an alternative therapy, but I have found them to be incredibly beneficial! I do pay out of pocket for them, and I budget for them like I do with any other big expense. The Vitamin C IV is $150 and the H2O2 is $100, but I'm able to purchase in a package at my naturopath's office for a slight discount. Insurance does not cover them, but I have been able to get them reimbursed by my flex spending account.
Triggers/Causes:
It's hard to say what it was that caused all of this to start so many years ago, but I believe there are a few different factors. My digestion has always tended toward constipation, and growing up I ate a ton of candy and junk food (I was a very picky eater). Coupled with a history of regular antibiotic use for things like upper respiratory infections and sinus infections, I think my gut was compromised from the beginning. Then, in 2011 I started taking hormonal birth control, which I believe further impaired my gut and disrupted my hormones (which had always been balanced up until that point). I used hormonal birth control for about 18 months before I lost my period entirely and my gut symptoms really started to flare up. That is when all of this really started, back in late 2014. I also spent several years of my life growing up in a house with mold, which we learned about after the fact. Given my MTHFR genetics, which hinders my body's ability to detox, I think this was another factor that put my body into overload and created a condition for things to get out of hand. I believe that the viruses were one of my underlying triggers, which caused my thyroid to get out of balance, which subsequently caused the SIBO, which exacerbated the leaky gut, which continued to trigger the Hashimoto's, and so on and so forth. As you can see, it's all very intertwined!
A few specifics on SIBO:
After my second round of Rifaximin, I followed a combination of the GAPS + low FODMAP diets. I held off on supplementing probiotics again for a couple of months. When I did start supplementing, it took me a few tries to figure out the ones that worked the best for me. As mentioned above, I have had the most success with the following:
-MegaSporeBiotic, 2 capsules daily with breakfast (this one has been a GAME CHANGER for my gut health and I recommend it to everyone with gut issues // you can order this from me directly through the contact form on my website)
-FloraSport by Thorne, 2 capsules in AM on empty stomach
-MBC by Systemic Formulas, 1-2 capsules at bedtime on an empty stomach (this is a practitioner only brand that is amazing for recolonizing the digestive tract after antibiotics, you can order this from me directly through the contact form on my website)
When I first started incorporating probiotics and ramping up my dose, I had to go slow. However, I believe that my gut was so depleted from all of the antibiotics that there were just not any good bugs left! At the recommendation of my naturopath, I bumped up my dosage significantly after a few months, and at one point was on 200+ billion CFU per day. It took about 6 months after my second SIBO treatment for me to see a significant improvement in my bloating, gas, and pain. It was slow, but steady progress, and I believe it was a result of treating the underlying viruses, optimizing my thyroid, and finding the probiotics that worked for me.
Where I am now:
I'm not quite at goal yet with my Hashimoto's antibodies, but they are on their way and making consistent progress. The rest of my thyroid labs are at goal. The other autoimmune antibodies that popped up, Scleroderma, went from severely elevated to below the detectable limit. At my most recent lab tests, both viruses were completely in remission. My pain is gone, except when I do things that I know that I shouldn't, like eat when I'm in a hurry or graze all day. (I can talk more about how I get myself out that in another post as well.) Last but not least, my brain fog is gone, I have energy to get through the day, and I feel a sense of adventure and passion again! Two years ago I never would have thought any of this was possible. While it has been an expensive journey and at times felt like I would never see progress, when I reflect on how far I've come I am so incredibly grateful to have the health that I have worked so hard for. With the exception of the antibiotics and a couple of other prescriptions, it has all been a predominantly holistic approach.
As I have been writing this, I have realized that there are SO many other factors that I would like to address, such as exercise, mindset, sleep, stress, and more. Each of these has had an impact on my health as well. I might have to come back and write a Part 2 to talk about those!
I'm definitely not perfect, but have learned so much about how to tune into my body, how to slow down when I need it, and how to take note of the foods that don't sit well with me. I hope my story is encouraging or helpful to you in some way. If there's only one thing that you take away, I hope it is to keep digging for your root cause and keep asking questions until you find the answers!
With love,
Tracey
UPDATE: I have taken all of the information that I have learned through my journey and successfully used it with several clients to help them heal their Hashimoto’s as well. After seeing just how powerful this information is, I co-created an online course to help get this information out to MORE people! You can download my free PDF all about the top 5 things I have done to heal my Hashi naturally and learn more about that course here.
Now, as long as I'm taking care of myself, I live a pretty normal life with minimal symptoms!