As a 20 plus year “veteran” of Hashimoto’s and with 10 years of interaction with the Internet thyroid community, I feel I can really say “I know your pain.” Although I have healed quite a bit in the last two years, I have no trouble remembering and sometimes reliving the symptoms that used to be my common, day-to-day life with Hashi’s before I got the help I so desperately needed. After giving up gluten which really marked the beginning of my more accelerated healing, I found a world of new food choices and this has really helped me with my transition to gluten-free and nutrient dense food. As I write this post, I am enjoying a handful of beautiful blueberries. These types of moments have given me some simple pleasures that have replaced my previous sugar gluten laden and nutrient destroyers. This has nothing to do with this post but just thought I’d “set the mood” a bit and give you a little glimpse of one of my newfound favorite foods.
In order to show you why I know your pain and exactly where I’ve come from, here are just some of the symptoms I had on a regular basis before I started the GAPS Diet a couple of years ago (by the way, this list is long and although many people without Hashi’s will look at this with disbelief, I know my Hashi friends will believe me so I am going to list as many of the symptoms as possible):
No particular order but here it goes (* = these are symptoms that can come back with triggers like gluten, or are now very minimal – bold means they are gone or significantly reduced so much I don’t consider them current symptoms):
*brain inflammation as a result of food sensitivities and leaky gut triggering autoimmunity (no, I haven’t been tested so I cannot be sure on this – regardless – it was the symptom), *bloated stomach after eating, upper stomach pain after eating, pounding in the upper stomach (like blood rushing to the area) after eating, *racing heart after eating, *racing heart at bedtime, *dizziness, *unsteady gait, weight gain for no reason even after eating only one small meal a day, heavy “bones,” terrible debilitating eye pain that came in cycles and spasms, numbness in arms while sleeping, twitching before falling asleep (always explained this as an electrical charge), throat pain and inflammation, chronic recurring infections and colds, *extreme cold extremities, feeling like I have the flu, no energy at all, *lack of concentration, *lack of motivation, *severe anxiety and feelings of “doom,” lost words (which made me feel I was losing more than words, this accounted for loss of time and relationships), headaches/migraines that brought me to the emergency room, brain fog that felt like cotton in my head, disorientation, terrible short-term memory loss, inability to explain my own thoughts, allergies to everything, chronic acute asthma needing nebulizer treatments daily, breathing problems aside from asthma, irregular heart beats, *skipped heart beats, *eye floaters, extremely dry hands in the winter, dizziness in the car, motion sickness while just sitting on a chair that barely moved, light sensitivity (I had to leave restaurants due to the lighting which made me sick feeling), *chemical sensitivities (terrible), loss of small motor skills at times, GERD so bad I could not lay flat in bed for hours at night, *insomnia, *exercise induced fast heart rate (within seconds of the beginning of exercising), chest discomfort, body wide inflammation, fingers too inflamed to wear my wedding ring, foot pain when walking, joint pain at night, feeling like I am going to pass out when I laughed hard from the pressure that went into my head (boy am I glad that symptom is gone – imagine having to control your laughter all the time!), *pressure in head during any exertion or bending over that gave me the same feelings, and an obvious blood sugar imbalance that caused me to be extremely irritable before meals and happy after them which also included terrible mood swings throughout the day. And believe me when I say I have not covered all of them here! (I talk about some of these symptoms in my one year update after starting the GAPS Diet here.)
All the above symptoms caused me to never plan to be at any social event. My life had to be on a spontaneous basis and based on whether I could function at all that day or not. Often, even if I did make it somewhere, I would have to go home shortly after due to some trigger while I was there (food, environment, exercise, etc.). Need I go on? I can! But I won’t. Although sometimes I think I should. I’ll tell you why in the next paragraph.
The reason I sometimes think I should go on is that on my Facebook Support Group page I get questions every day about others feeling “weird” symptoms and wonder if anyone else has them. As you can see from the list above, you can understand why my common response is, yes, many people have that symptom! Why? Because we are dealing with a system wide problem. We are not dealing with the thyroid (although indirectly we are because our body needs thyroid hormone to function properly in almost every function and organ of the body). But what we are really dealing with is the foundational root problem of Hashimoto’s disease; which is not the thyroid. We are dealing with an autoimmune condition which has triggered the progressive destruction of the thyroid. There is a huge difference! It’s kind of like trying to fix a broken object while someone else continues to beat on it. You need to either address the attacker or remove the object. Unfortunately, with autoimmune disease, you cannot remove your whole body! You need to address the attacker or you will never make progress!
Fast forward two years now in March of 2014, I can report that few of these symptoms are left on a regularly basis; some are completely gone.
The most common trigger of these symptoms are accidental ingestion of food sensitivities. Getting through the fine tuning of a healing diet is one of the more challenging aspects of healing. Sometimes, these food sensitivities are not so obvious and it takes some real detective work to figure them out. I have used many resources for this task. My favorite resource has been looking into the Autoimmune Protocol and the Autoimmune Paleo Cookbook by Mickey Trescott in eBook form as well as the newly released hard copy. This guide helped me look into food I may not have otherwise questioned. Now, I also have Sarah Ballantyne’s awesome book The Paleo Approach and the why’s behind these possible culprits. I share more of my most used resources on my blog’s resource center here where you can also look at product categories on the right side links, like gluten free food choices and cookbooks.
The second most common trigger, and seems to be somehow related (probably hormonal imbalance), is insomnia causing sleep deprivation. I would say this is what causes me to miss the most time and makes me feel like I have literally lost part of my life. Not only I am so tired I cannot function, but I am hopelessly aware that those around me are not getting “me” and I feel so useless. These days are quite desperate for me as they remind me that it doesn’t take much to fall back into symptoms I, many days, forget about now. Sleep deprivation causes lack of detail in tasks, forgetfulness, complete lack of motivation, and the one track mind of getting to sleep as soon as possible. Wasted time is horrid but there is really nothing that can be done about it except to recoup the time the next day or when I catch up on sleep.
The last remaining trigger (besides blood sugar regulation) is hormone cycles. I know that I am not alone when I say that pre-menstrual days are not only draining but can cause the most distress each month and most often, the insomnia above is seen about a week before this monthly “event.” This is the area that I know is the hardest to stabilize with diet and lifestyle but I am working on this and making great progress. When we are healing, one of the most important things to remember is where we’ve come from and where we are attempting to go. Our focus on small victories is crucial to continuing to heal.
And finally, my brain sometimes gets discombobulated. I am slow thinking. I am methodical. I cannot have things happen too quickly or I get overwhelmed. I have finally realized that I cannot make life slow down and that this is the reality I must account for as I go through life. It is why I must set aside full days for a focus like a blog post (like I am today), or cooking a batch of food for the week. It is not easy. In fact, I often refer to this clip from I Love Lucy as the best way to describe the life of someone with Hashimoto’s when it is causing that “overwhelm” feeling. It, to me, represents a perfect picture of the cycles I go through with this disease:
I hope that made you laugh because it does that for me when I am needing to take a step back and re-evaluate how much is “on my plate.” I am not sure I can handle as much as a person who does not have an autoimmune disease or at least one that has not progressed as mine has over more than 20 years.
The bottom line here is that I wanted to remind you all that I do very much feel your pain. I have seen great changes over the last couple years. I am very hopeful we will continue to find more ways to help ourselves and that the awareness to help the autoimmune community is growing and will yield more support. In fact, I hope to introduce you to a new possibility in our healing approach next month after a bit more research is done on my part.
If I had ONE thing to tell a newly diagnosed person without all these symptoms, it would be please don’t wait until your thyroid is destroyed enough for medication like the conventional model suggests! Please look into the underlying autoimmune condition. Please look at the resources on the side of my blog and in my resource area so you can have time to study what is actually happening in your body before your brain or other tissues are symptomatic. It is easier to learn before you get to that point. At the point I am at, it’s a miracle I am still writing on this blog! It’s a miracle I am healing at the pace I am! I allowed the disease to progress to its advanced stages (not deliberately – the information just wasn’t available back then). Don’t let this happen to you. You have the fantastic opportunity to make changes NOW that will not only help you slow the speed of this disease’s progression, but might save you from multiple autoimmune conditions down the road! This interview is invaluable and provided by Dr. Marc Ryan and Dr. Kharrazian. Take some time to watch each part and be sure you don’t miss anything. This opportunity is not common so don’t miss it! I am so thankful to Dr. Marc for this incredible opportunity to get this information in the form of learning I do best. One of my other symptoms is I am not a fast reader so this type of video learning is exactly what I needed! Large books scare me!
Choose the type of learner you are and go after that material. There is enough out there for all of our personalities. If you just want a doctor to help you – consider a Functional Medicine doctor. If you want to learn about the very scientific basis of autoimmune disease and all the studies behind it, check out Sarah Ballantyne’s book, “The Paleo Approach” which will give you a plethora of references to help your curious mind. If you want a scientific approach without all the scientific data but would like the conclusions, get Dr. Izabella Wentz’ book, “Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause.” And if you are more of a “do it yourself” type person and would like to explore the metabolic functions, gene mutations and nutritional deficiencies by using diet and supplementation, you might like to look into Jeanette’s book, “The Eli Diet” where she talks about how she became bound to a wheel chair for unexplained reasons and when doctors couldn’t help her, she took matters into her own hands and used nutritional measures to walk again and continues to get stronger and stronger and now fighting to get these nutritional deficiencies noticed in the medical community. Her website is here if this subject interests you.
So you can see, I must know at least some of your pain because I have had to look into these resources for myself and continue to do this on a daily basis. This is the reason I keep my blog. When I find out that something is helping many people, I will report it here. So, if you are not signed up for automatic blog updates, feel free to do that now. Or hop on over to our Facebook Support Group where I will continue to bring my newest blog posts to that group as I do them.
Here’s to our continued healing journey!
Disclaimer: All posts are describing my personal journey through health issues and are in no way meant to guide anyone towards any method in particular. I am not a medical practitioner or have a dietary or medical license, and this blog is not intended to be taken as authoritative advice. Please see your doctor, or health professional before making any drastic diet changes! Also, occasionally I find others to partner with whom I have had tremendous help from and therefore, there may be paid advertisements and links to support them and help me financially run this website.