December 2017 – Lonely Hashimoto

My turning point

Since I was diagnosed almost 4 years earlier, what took me so long to make significant changes as I did in Summer 2017? Well like most, I was prescribed a magic pill of Levothyroxin when I was diagnosed. After a couple short months I noticed a huge improvement in how I felt. So that was that, take a pill daily and I can live my life happier forever, right?

I said I saw a huge improvement, but not everything went away. For example, heart palpitations never went away, but my doctor wasn’t concerned why should I be?

My indigestion was basically accepted to some degree. I had gone to the doctor for that and he of course told me to take an over the counter antacid. That didn’t help so he prescribed me a PPI (protein pump inhibitor). That also did not eliminate the symptoms completely so he recommended I go to a Gastroenterologist.

Nah. I decided to do more research. Did you know that indigestion remedies such as over the counter antacids and PPIs lower our stomach acids when in fact typically low stomach acid causes indigestion? Low stomach acid causes digestive issues. Seems counter productive.

I worked with a very good friend of mine who was a health nut and she recommended Good Belly probiotic drink. That was my introduction to probiotics. Drank that daily and bam!! The indigestion was gone.

I didn’t stick with it. I think we all have a tendency to feel better and after a while return to old ways. I won’t do that this time.

Well I should have learned a bit of a lesson with the indigestion/probiotic experience. What I put in my body on a more natural way helped me. But I still was okay with the daily pill. They even were able to reduce the mcg of my prescription from 125 initially to 75 so I took that as a good sign.

Early 2017 things started to change for the worse. I was playing single mom while my husband was out of town and run kinda ragged with my 3 at home very active daughters. I had 3 amazing job opportunities with flexibility that were perfect for my mom schedule. A couple of those jobs fell apart beyond my control (one of which was so dramatic it is silly). I didn’t understand how miserable and even depressed I felt after. Couldn’t really understand why it bothered me so much.

I felt more and more exhausted. Re: single mom role of three active daughters. Oh the taxiing!!! My eyes would feel so heavy as I drove that I was borderline worried I may fall asleep. Luckily I was driving mostly in town. Concerning and weird but I was just worn ragged I guess.

It really was the summer of 2017 that I had to start accepting (again) Hashimoto didn’t like to be ignored simply with a pill.

I had a feeling it was Hashimoto, so went to the doctor for some testing. As the tests were narrow scoped (only TSH, no antibody testing included) and “normal”, the nurse practitioner I saw of course diagnosed me with anxiety yet again. Eye roll. I refused, again, treatment for that.

I noticed things like milk started to make me feel bad. I went on a few vacations and one of which included a night out with my friends. It completely sucked because I felt so nauseous and just sick even though I wasn’t coming down with anything. I had had a delicious latte from one of my favorite coffee shops (shout out to Caribou coffee!!) The foo-foo drinks were my stress relief, but backfired now. That wasn’t cool, as my time with these friends out of state was my escape from stress of life too!!

Hair balls had never really gone away but the rate and size definitely picked up this year. Even my husband commented on his friendly hair ball greetings in the shower daily (I just forget to throw them away!!), but now had the addition of hair accumulation at the drain as well. Even with this and brushing I could still stand over the trash can and run my fingers through my hair and throw all the lose strands away for about 5 minutes.

Other symptoms raring and ready to show their ugly head included brain fog (I seriously was scared when someone I was working with mentioned something we had worked on the week before and I truly forgot about it completely), gassiness (the burping had become a not so funny joke in my house), restless legs returned, complete lack of motivation (I seriously felt like such a loser most of the time!), sudden desire to cry over nothing in particular, palpitations daily, heart racing suddenly at least weekly, almost daily headache on some level including migraines increasing in frequency, the “dead arm” while laying down, and the never ending non existent poop (I still am embarrassed to put that out to the world, but no holds barred here!).

Our last trip that summer included a visit to another piece of our family in another state. Luckily it was a laid back sit around with family type trip. My husband was there with us on this one (he wasn’t always). I can still picture us standing outside while he worked on repainting an antique light pole and I told him with tears I just don’t feel like I will live a long life.

That may seem an exaggeration to some but I truly felt like my life would not be long. I couldn’t continue to feel this worn down and miserable for another 40 hopeful years.

I had begun researching with the help of two expert written books: Root Cause by Izabella Wentz (she is my idol in all of this!) and Adrenal Thyroid Revolution by Aviva Romm. I learned that once a person has an autoimmune disease they are more likely to get another in their lifetime! There are more than 100 other autoimmune diseases including such horrible ones as Celiac disease, Crohn’s disease, Rheumatoid Arthritis, Type 1 Diabetes, Lupus, and Fibromyalgia. For a more complete list refer to https://www.aarda.org/diseaselist/.

Heck no!! I can’t let that happen!

I made the decision that trip I was going to make significant changes when I got back home. I vowed to find a doctor to change my prescription to one more recommended by fellow Hashimoto’s patients, natural dessicated thyroid (NDT). I also vowed to try and heal myself with a restricted diet plan called the autoimmune protocol (also known as autoimmune paleo), or AIP.

We returned home Sunday, Monday I shopped and planned, and Tuesday I dove in with the diet. I will say the first few days were hellish: I cut out sugar and caffeine (well 3-4 cups down to a small half cup since couldn’t go cold turkey as I thought I might die, then completely done after one week) which I am pretty sure while causing unknown to me destruction in my body, made my prior daily life feasible.

I was able to get an endocrinologist to switch my prescription as well a couple weeks later. In addition I researched and found a functional doctor (oh how expensive!!) that was willing to dig deeper into other potential issues (which we discovered multiple issues such as H Pylori, Small Intestinal Bacterial Overgrowth, and low pancreatic function thanks to her!). No holds barred for me.

My dietary restrictions are challenging mainly when I am out or at social gatherings. The cost of supplements and healthy food is a tad insane. Why the hell does healthy food cost so much anyway?!! When I say healthy I mean organic, grass fed, cagefree, all natural type stuff. I don’t eat anything with added sugars, caffeine, alcohol, dairy, gluten, most nuts, eggs (recently added back) anything artificial, certain vegetables, and vegetable oils. I’d like to say I am saving so much money without my foo-foo Starbucks and caffeine drinks, but definitely doesn’t balance out.

The past 5 months have been hard and had plenty of ups and downs but I am still full steam ahead. I constantly research and put myself pretty far up there on my to do list. That last one was probably the biggest change for me as a very maternal-put-kids-first-always mom of 4.

I really believe overall I am getting better and feel better. Many symptoms have gone away. This battle isn’t over yet though for me. It won’t be over until a doctor can tell me I don’t have the antibodies for Hashimoto’s disease any more.

I don’t ever want to feel like I won’t live a long life again.

Who the heck is Hashimoto?

So who the heck is Hashimoto?

Just shy of my 39^th birthday I was feeling awful (refer to my first blog post), and I am so thankful I found a doctor who ran a few extra tests to make sure I was okay. He did of course prescribe some Xanax for my apparent anxiety (I can’t tell you how hard that was for me to accept as I am adamantly opposed to unnecessary medication, especially drugs that can be habit forming), but luckily for me he didn’t stop there. Through my visits while battling this disease, I have become quite the doctor skeptic now, unfortunately, and believe so many would have sent me on my way with a diagnosis of anxiety and left it at that. Did I emphasize how grateful I am to have found him?! I was diagnosed as being hypothyroid and subsequently, again after more tests, also as having Hashimoto’s disease.

Hypothyroid is when one has a low functioning thyroid gland (while hyperthyroid is the opposite, overactive). The thyroid gland is a small butterfly shaped gland we all have in the base of our neck. This gland releases thyroid hormones and has an essential role in our body functions. The primary functions of the thyroid hormones are to regulate our metabolism, growth, body temperature, heart rate, even blood pressure. If the thyroid is underactive, it has a huge effect on our bodies and how we feel.

There are multiple reasons a thyroid can be low functioning. One of the most prominent is Hashimoto’s disease.

Hashimoto’s Disease, also known as Hashimoto’s Thyroiditis, is an autoimmune disease in which our own immune system attacks our thyroid. Diagnosis is determined by the detection of thyroid antibodies in the bloodstream. It was discovered by a man named Hakaru Hashimoto in 1912. Why in the world the body malfunctions and attacks itself is still a mystery. It is understood at this point the body has to have a perfect storm in order for Hashimoto’s disease to kick in. According to the woman I refer to as the most knowledgeable in this field to date, Izabella Wentz (https://thyroidpharmacist.com/), we need to have three things in order for Hashimoto’s to kick in.

First, we need to have a genetic predisposition. This is a toughie for some of us with the disease to see in an obvious way. I don’t have any known family members with Hashimoto’s. However, I don’t really have a large family and at this point can only base that off of my mom, sister, and one grandmother. Maybe someone had it and didn’t even know. Or maybe someone carries the “gene” but didn’t have the perfect storm in order for the disease to fully kick it in gear. Either way, no proven genetic predisposition is known for me. I did recently find out from a 23andme testing I did for other reasons that I carry a genetic predisposition to Celiac disease, which is another autoimmune disease in which the small intestine is damaged stemming from Gluten intolerance. This is the closest I have to any validation in the genetic territory.

Second, we need to have intestinal permeability. Intestinal what?! Another even less appealing phrase for this is “leaky gut”. Ew. This just makes me cringe thinking about it. As awful as it sounds it is actually pretty common and easy to have with the Western diet and lifestyle we Americans are so used to maintaining. Our gut is our biggest immune system organ and what we put in it and how we treat it has an astronomical effect on our health. When one has leaky gut, the tight junctions in the gut have flawed us and are allowing particles to seep into our bloodstream. Our immune system is thought to kick into high gear when these foreign particles are in our blood stream.

I don’t think I have ever treated my gut very well. From a young age I had quite the sweet tooth. I would eat sugar, confectioners, brown, regular, any really, straight out of the box with a spoon. We really didn’t have a lot of treats at my house as a kid, but my lunch every day was packed by my dad. He made a deli meat sandwich on a nice keiser type roll, a piece of fruit, and a Little Debbie type snack. I only ate the treat. Oh the guilt, and regret, I feel to this day. Kids can be kinda dumb sometimes. My brother admitted as an adult he did the same. Rock candy was one of my favorites, and I used to ride my bike to the bulk candy store and stock up. Even as an adult, I was always fairly thin so didn’t really think too much about the calorie count, forget about the nutrition content, and my sweet tooth reigned daily. In addition, I was a coffee addict. I understand coffee can be healthy in moderation. My 2-3 cups in the morning were probably okay, even with the occasional flavored creamer, but the afternoon “fufu” drinks…..probably not the best to an already damaged tummy. Veggies…..hahahahahahaha….I would eat them but I recall saying to a coworker as recently as 3 years ago that I thought she was crazy for craving colored peppers for a snack. Coffee or treats….now that was my craving.

In addition to not always eating the best, I must say I had a decent time in my early 20s (if we’re being honest, even some times in my 30s). Some of these times definitely included a little too many alcoholic beverages. Alcohol is known to damage the stomach lining and decrease digestive enzymes. Now, I was no alcoholic by any means, but if my stomach was already not in tip top shape, these fun times most likely damaged it even more. Again, if we’re being honest, I wouldn’t change those times at all. Maybe just eat better overall. And stress less, which leads me to the last item in my perfect storm.

The third thing needed for Hashimoto’s is a little more brood based or less specifically called “triggers”. A trigger could be a serious illness, food poisoning, serious stress inducing event in our lives, or a constant exposure to something such as radiation, even the toxins in our food and daily environmental surroundings,something that sets us off and wears us down. This is also another one of those tough to pinpoint items. For me I have analyzed this for months, and can only guess at what it could be. For some it is more clear after the trigger event occurs. I believe the sudden death of my husband in 2005 was most likely the primary trigger for me. I do believe in a combination of triggers, and for me having 2 children within 2 ½ years of this highly stressful event probably contributed as well. Pregnancy can be hard on a body and this alone can trigger a negative reaction. In addition I had a serious case of food poisoning early in the first of those two pregnancies (nothing quite like raw slimy lobster in your lobster bisque).

I don’t have to get into the details of what I went through emotionally, but I will tell you I had a constant nervous feeling in the pit of my stomach for years. Even when I didn’t think I had anything to be nervous about, it was there. Still to this day, it can appear, although less frequent. Just typing this actually is bringing it back. The subconscious and the effects of stressful events can be picking at us even when our conscious state isn’t aware. In can continue for so long even when we tell ourselves we are fine. Occasional stress isn’t bad, can even be good, but constant stress is bound to take a toll.

Genetics, leaky gut, and stress are probably what led me to this battle today. Some things I could have done differently, some I had no control over. I can only learn and change what I do going forward.

Hashimoto’s Disease does not have a known cure, and once diagnosed, typically the treatment is a daily pill to help increase our thyroid hormones. I am taking this one step further by trying to fix what is wrong in my body with hopes of remission one day. The battle is a tough one as the damage done and continuing to occur is hard to offset.

Luckily for me, I am known as a fighter.

(Un)Welcome to my home, Hashimoto

I never expected to receive an unwelcome guest who would stay with me for the rest of my life. Heck, I didn’t even know who Hashimoto was. Even when we were introduced I didn’t really think much of Hashimoto from it’s appearance and the brief introduction by my doctor. We had almost crossed paths years earlier by a different doctor, but that doctor incorrectly told me we didn’t need to meet.

I didn’t realize even after we’d been introduced, how ugly Hashimoto really was on the inside. How volatile, sensitive, depressing, energy sucking, vile, and really invisible to the rest of my loved ones around me. I have learned over the years of knowing Hashimoto better all the time, Hasimoto is quite lonely and wants me to feel the same way in our relationship.

Even when I told people I have Hashimoto’s, and subsequently found out they do too, our guests Hashimoto don’t seem to have the same personality traits. Apparently Hashimoto affects each of us differently, we each deal with it differently, some of us are able to simplify it like the general doctors do, some others aren’t able to due to the strong characteristics of our own personal Hashimoto.

My Hashimoto greeted me with a vengence. Apparently Hashimoto didn’t like to be ignored for any longer. Hashimoto made sure I felt pretty miserable with the most seemingly random symptoms. It was almost like a ghost from the dead trying so hard to reach out to me, and I continued to explain everything away as something other than what it really was.

The sudden sadness coincidentally once I returned to work after being home with my kids for 9 years was pretty obvious. I couldn’t handle being away from my kids. Crying in my cubicle office daily was easy to explain away. It was also quite the valid reason to quit my job.

Cold? I lived in Minnesota. Cold and MN are equivalent.

The feeling of weakness and lack of energy and motivation, well I was getting older. I guess I should just work out more, but where the heck do I find the energy?!

The restless legs….well I had seen the commercials for sufferers of this and medication for it (which of course I would not take). I just seemed to accept weird things happen to weird people, and restless legs happened to me for no apparent reason.

The trouble staying asleep….I have seen so many people complain of that on Facebook, so I guess that is a symptom of our aging that we have no choice but to accept.

Teeth grinding became just yet another added symptom of my “stressful life”. I mean, I also had a constant nervous feeling in my stomach most days for years. I would wake up to an immediate anxious feeling. I had experienced some pretty traumatic events in my life, my marriage wasn’t always great (of course THAT couldn’t be due to any of my symptoms like my quite frequent irritability!), I was a super mom to 4 super active daughters. Of course I was going to have symptoms of anxiety! Back to the sleeping……stressful life to blame possibly too! I felt quite often overwhelmed with life in general (thank God not in a self harming sort of way!), but I just chugged on through.

I felt pretty tired a lot. I even posted on Facebook once asking for advice on how to stop feeling so tired even though I was getting plenty of sleep. Exercise was a suggestion…but again, back to that lack of energy thing.

My daily hair loss, that is the one that took me to the doctor the first time. As apparently Hashimoto wasn’t introduced yet, I just compared myself to an animal shedding excessively. It seemed dramatically more in spring and summer months so I really was just shedding my extra coat. I could easily wipe up the excessive hair on the bathroom floor with a circular swipe of a tissue, and in the shower hair balls on the ledge greeted my husband daily. Hey, at least I tried not to clog the drain! As far as why, well my mom has pretty thin hair too so genetics just suck (in more ways than I knew then).

The ringing in my ears….now that’s a weird one. No explanation for that one, but simple enough to ignore.

Weight gain is just supposed to happen as we age, especially as women, and personally a woman who gave birth to 4 children. At least that is what we are told, and expect to happen. It is true our metabolisms slow down, and refer back yet again to my loss of energy and motivation, so not enough exercise will certainly contribute to that. Even though I was keeping detailed track of my calories and still watching the scale ever so slightly creep up, I just had to accept I was getting old. I mean, I was in my late 30s after all (insert eye rolls here). Older=fatter.

The very dry skin in such random places such as my eyelids. Well, I guess I have become super sensitive to eye shadow, and I never really wore much of it anyway, in my “old age”. Simple solution, don’t wear eye shadow.

Pooping and I have never really had a good thing. Pretty much all of my adult life I have been researching constipation and trying everything to alleviate it. I just wanted to poop on a daily basis like they say you should. I had accepted that I just wasn’t a pooper. Human nature, be damned! I had tried everything recommended, from increasing fiber, supplements, exercise, occasional laxative, you name it. Pooping just wasn’t much of a thing for me. And that, my dear friends, is a symptom you really don’t discuss with many people, heck no one really, as I am quite the modest girl. So I suffered and just silently rejoiced when an occasional good BM came my way! (Insert the blushed face here)

Headaches are just a part of life. Who doesn’t get headaches? I didn’t think much of the fact I had multiple types of migraines. Well, actually, I did try to keep a log to discover any triggers, to no avail. I could still function with my many headaches and migraines and I knew so many others have it much worse with debilitating headaches. I just either had a constant pain in the left side of my head and face or I couldn’t see clearly with a visual aura of squibbly (is that a word?) lines in my peripheral vision for about 30 minutes followed by a dull exhausting ache in my head for the rest of the day. Functional, so just part of my life.

Palpitations are scary. The first time I mentioned them to a doctor I told him I didn’t think it was my heart but a fluttery feeling in my chest. His reply was that it probably was my heart as palpitations and he was not concerned at all. Mentally I have always been concerned since it started but reminded myself the doctor was not, even with no additional testing or explanation. (insert wtf here)

Now waking up in the middle of the night with a completely dead numb feeling in right arm was a little freaky. Only saving grace for my sanity of that is that it was my right arm, and not my left. No explanation could really be found, but I guess for my long term mental state it is a good thing Hashimoto and I were introduced shortly after this crazy scary symptom appeared. I guess this is when Hashimoto was really starting to try everything in the book to get my attention.

Hashimoto was just sick of being ignored at my house.

The sadness upon waking, to the point of crying before my head even lifted off the pillow didn’t make a lot of sense, but we had just made a big family move. I knew I was stronger than that though, which I guess made me feel worse….what the hell was going on?!

It wasn’t until the anxiety attacks in the middle of the night did I realize something was definitely wrong. The feeling of being awoken suddenly with an intense panic and feeling of imminent death (honestly, sat on couch in dark, alone, feeling like I must be dying) finally led me to the doctor again and my introduction to Hashimoto.

Oddly I can say I was somewhat relieved to meet Hashimoto. I finally had an explanation for so many crazy things that I had been experiencing and feeling in the past couple years. I didn’t learn until more research almost 4 more years even after my introduction that Hashimoto was to blame for so many horrible things. One of those was literally starving my last sweet baby girl as my body couldn’t make sufficient breast milk anymore, no matter I had successfully nursed 3 other children (one of which was just a year prior), and no matter what I did to try and increase production.

Additional symptoms like bloating, acid reflux, eye strain unrelated to vision (verified by an extremely knowledgeable eye doctor), brain fog, sudden onset of intense fatigue randomly, sudden need to cry for no apparent reason even if had just been laughing, rapid heart rate randomly even while resting, low blood pressure, orange peel type texture skin, all appeared even after my introduction to Hashimoto. This was all even while on medication to keep it at bay.

I have learned quite intensely I don’t like Hashimoto. I am sick of all the complication Hashimoto brings to my life and the way it makes me feel. The unwanted guest at my house needs to get the boot. This is my journey of trying so hard to evict Hashimoto. It is such a lonely journey, but I know finding others that experience even part of what my Hashimoto has brought to me helps in knowing I am not really alone. I am hoping this does the same for you.

Hashimoto is lonely, but we don’t have to be.