Hashimotos Thyroiditis: It’s a Journey

 

 

IMG_4311When I was first diagnosed with Hashimoto’s Thyroiditis, I immediately thought the doctors would have a handle on it and give me the right pill and I would live the rest of my life having control over this disease. Why do you think I thought this? Because I was told by my doctor that a pill would take care of the symptoms and I would live a healthy, long life because of it. That has never played out as true and honestly, I know no one in the Hashimoto’s community who has had that experience either! But, because my doctor said this to me, I spent years believing all the symptoms I was having had to be from “something else” and that I should never question that the thyroid medication might not be controlling my thyroid symptoms, especially since my lab results were “normal.” Boy, was I lead astray. It didn’t help that I had never heard of the condition prior either. I just trusted my doctor which is the way it was for me back then, now about 20 years ago! I sure wish Dr. K’s book was available back then! And as you will find out below, I wish I had access to the supplement I found this year which has really just changed my life and I am not the kind to joke around about that! Keep reading though because I have gone through a LOT to get to that point and I know I had been doing a lot of healing and want to share what I learned before that.

Keep in mind as you read this that this is my journey. I am not a doctor and not an expert but I like to think I AM an expert in the suffering Hashimoto’s deals to us as a community and that is why I started my blog and I am thrilled at how far we have come since I started my blog over 10 years ago! It is so encouraging! There is so much more to help the community than when I was diagnosed so if you are a new sufferer, take heart, you have a LOT of support if you just make a point to find the help.

So, today I thought I’d take a “snapshot” of the journey I took. It only contains the highlights as most of us know how terrible this journey can be when trying to find anyone to listen. You feel alone as you walk this road without support. That is why I created my support group. Not necessarily for answers, but for emotional support (although there are many resources now available you can find there to hook up to). I want this post to be a “snapshot” of my journey so you can see that nothing usually gets better without trial and error and that you must depend on your desire and intent to get better in spite of what your doctor might be telling you is not related to your disease. Truly, they don’t always understand autoimmune thyroid disease. They look at your TSH and make a determination that you must be fine, not realizing you may have a full blown attack going on inside of you.

Here’s my journey in a quick and precise, order of events (with autoimmune disease, there is no real “quick and precises process” so I have made it as precise as possible) which I may go into further in the future depending on the interest level (all the steps below began about 15 years ago and progressed steadily over the last 15 years):

  • Before getting to this first step, I realized I was not getting better and after being in and out of the emergency room with rapid heart rates, migraines, etc. (see My Story), I knew I needed help outside of what I was getting. I read a book called Solved: The Riddle of Illness, at that time the author was Dr. Baroda Barnes. Learning how to take my basal body temperature was critical in seeing I was still having thyroid problems. This lead me to The Wilson’s Syndrome which I generally don’t recommend but it was the only other natural treatment being discussed that I found through books (the Internet was still not an option back then for me). I didn’t have any real healing through either of these avenues as far as doctors go because the cost associated with finding doctors who even humored these methods were out of reach. So I continued my search. But here is where I learned about Armour thyroid. I began to seek my doctor’s help to get this.
  • I began to ask my HMO doctor if I could try natural thyroid medication (I was on Synthroid for about 7 years before this), but as most of you have experienced, this request was met with a very typical distrust of any “natural” supplement and regarded it as “dangerous.” Forget that I had heard that Synthroid could be pulling calcium out of my bones and that I was apt to have early onset osteoporosis if I kept taking it (don’t hold me to this – rather research it for yourself as it was just what I heard at the time). I guess he didn’t see that as dangerous. So, I tried more than one doctor. I moved a couple years later to a new area and thought maybe I would be fortunate enough to get a doctor who would be more open-minded within my HMO but no, it was worse. He said emphatically that if I thought diet or a natural supplement would help my disease I was wrong. Isn’t that nice of him? So, this is when I knew I had to look outside of my insurance as I was miserable and knew I needed help I couldn’t otherwise get.
  • I looked for a doctor who was listed on the Armour website as being a doctor who has prescribed Armour. I found one in my town! Whew! He instead gave me Naturethroid (he liked it better) and I was finally able to try this option (this website helps you find a doctor who may prescribe this medication). It was wonderful! I finally got some energy back and my bones stopped hurting. I remember before this I felt like my bones were dry and heavy when I walked. I haven’t felt that way since. This was a great way for me to find out that I needed to trust my “gut feeling” and if I had to pay for the help I was getting, well, it was worth every penny. So, I turned from my HMO forever for thyroid issues as they simply will not prescribe Naturethroid for me even though I told them how well it works for me!
  • Some symptoms were still with me though (many actually) and this led me to another natural doctor who would help me with my head issues which was my scariest symptom. I had what I felt was like little seizures, brain inflammation that caused me to not to be able to think and it came in cycles or “episodes” which sometimes lasted hours, days or longer. I couldn’t figure out what the trigger was. It was worse in the spring but I had the problem throughout the year. I found another doctor who also was a massage therapist and found out I had blood flow problems going to the left side of my brain. She performed deep massage to my neck and it helped the blood flow. But still, this wasn’t the root problem but did give me relief. She recommended I consider diet as a possible help which came in the form of a cleaner diet than what I was currently on. It was more like the Mediterranean Diet and eliminated preservatives and focused on whole foods. I thought this was a good idea. So I began this diet.
  • It was shortly after that when my world began to open up and the “answers” began to flood in, a little at a time. I finally was willing to look at diet for a change and now I saw other possible solutions. I found the book of all books, as I like to call it, better known as Nourishing Traditions, by Sally Fallon and now, we were getting somewhere! I can’t say enough about this book. Then I began to take cooking classes from what I believe to be the best online cooking class on the net. I am still a member of this class to this day because she keeps expanding her offerings of traditional cooking and food preparation that continues to benefit me. The class is called GNOWFLINS by Wardee Harmon and I not only have to thank her over and over for this opportunity to learn to cook this way, but I think she is one of the most wonderful people I have met on the Internet over all these years! I highly recommend this step for anyone feeling overwhelmed with learning traditional cooking as described in the book Nourishing Traditions. If you miss the link in this post, I always have her class announcements on the right side of my blog. I love these classes that much!
  • After I learned that gluten might be a problem and linked to Hashimoto’s Disease, I thought that breaking down the gluten in sourdough would be a good way for me to digest it. So I took Wardee’s online classes and learned how to make awesome sourdough bread! Yay! I LOVED this. However, I found out this did not do the trick for my digestion problems and I did not see my thyroid antibodies lower from this method unfortunately. This is when I realized I might have a leaky gut. NOW, we are getting closer to the root problem! Gluten is a possible culprit of breaking down the lining of the intestinal wall causing multiple food sensitivities as the particles then are able to get through into the bloodstream. Wow! This was great information and now, maybe healing the gut will be the answer!
  • So, in came The Maker’s Diet, by Jordan Rubin and although there was some success, it wasn’t enough. This led me to begin looking for another doctor who was more knowledgeable in Hashimoto’s. That led me to the best break I had in my whole journey to that point. In came Dr. Robert Boydston, the first doctor who really listened to me and really knew I was not going crazy! He knew to look at the gut as a possible problem and knew what tests to run. I was in heaven for the first time in years! Someone really understood AND knew what to do! Amazing! And more incredibly, he was within an hour of driving distance. So, I began to work with him.
  • This Functional Medicine doctor recommended a grain free, sugar free, low carb, high good fat, whole food diet. It was even more detailed than that, but you get the idea. I resisted a lot of this but the bottom line was that I knew I needed to get well. I was very sick. I knew I needed to get off of gluten so I concentrated on that and realized I was going to have a fight to get rid of cross-contamination. If you think you are off of gluten, make sure you are. I never realized I was still getting cross-contaminated for many months by washing my dishes with dishes that had gluten on them, restaurants who put my grilled meat on a grill which was also used for bun toasting, etc. This was a serious learning curve for me. Once I got through this hurdle, things got much better. But I didn’t really want to go off of the grains….yet!
  • I continued to have some problems, although I knew I was on the right track because a lot was changing. Now I knew I wasn’t getting gluten and still had some problems. I knew I hadn’t healed the gut. This led me to the GAPS Diet which I have used as a base for over 2 years now, minus any food sensitivities or small variations for my particular needs. My blog consists of many posts regarding the GAPS Diet now because was the first thing that really turned me around. And looking back, it was very close to what Dr. Boydston recommended a year before but I didn’t “get it” back then. I wasn’t emotionally ready to go on such a strict diet. I needed to first get the gluten free thing down. (If you are working to be 100% gluten free, make sure you read my 8 part “Let’s Go Gluten Free Series” for valuable tips and important information you might not be aware of yet!) This diet made a big difference in my most serious symptoms but along the way, I learned about other food sensitivities which can be different for each of us, and I outline those possibilities in that series. My before and after the GAPS Diet journey is recorded in my post here.
  • In August of 2013, I did a post about a new book that I felt delivered much needed troubleshooting information that helps us sift through the maze of symptoms we battle and gave ways to manage them better than any book I have read so far for the basic reader (it wasn’t over my head). I highly encourage you to get this book asap to give you the tools to understand your symptoms and learn ways to manage them. It also helps you understand how to move forward with healing. The book is called “Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause” by Pharmacist Izabella Wentz and even more conveniently now available in eBook form for immediate help! My book review for this can be found here where I recorded a video about how I feel the book will help other sufferers as well as myself. I can’t tell you enough how much this book has meant to me, especially knowing this information can now be at the fingertips of all sufferers! I know this will help many people! It has a special place in my heart since my blog has always been about finding the “root cause” and now Dr. Wentz has a book with a focus on just that!

Update January 2015: I’ve saved the best for last (in my personal journey) because I have had significant help from a supplement I was introduced to over a year ago.

So speaking of healing the gut and dealing with the triggers: I am thrilled to tell you that I have turned a major corner with my daily symptoms in a way which has never happened before! I have found a supplement that has done incredible things to help with some of the triggers I have been working on through diet alone, but hadn’t had enough success to feel as well as I desired! I have been taking it for about 10 months now and had waited to report on it because I wanted to be sure that the changes were lasting. And they have been!

So I have created a separate blog for the weight loss and blood sugar balancing supplement that is changing my life and overall health. Blood sugar regulation is HUGE when it comes to autoimmune conditions which is just one of the reasons I believe I am feeling so much better when taking it. I am not talking about a little better either. I am talking about a whole new me! A “perfect me?” Of course not. But a whole new level of improvement is what I am reporting here. I am no longer a “hermit” and can finally plan ahead for events, instead of always “waiting to see how I feel,” like it used to be. I talk about my story with this supplement on the front page of my new blog where you can learn more about my journey and more about the supplement. If you have any questions, there is a contact form over there for that purpose. This blog remains all about Hashi’s! So please no comments here. I will be happy to answer any questions over there!

We have to be persistent and know we will find healing as we go. And let me add, what works for me, may not necessarily work for you. It is an individual journey but I have a lot of confidence in the focus of healing the gut based on my own experience and the experts I have listened to in our wellness community.

The bottom line is: Don’t ever give up! And don’t believe ever that there are no answers because they are coming faster and faster to our community! Stay tuned as we all learn more and more together!

 

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.
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Comments

8 responses to “Hashimotos Thyroiditis: It’s a Journey”

  1. BETTE Avatar

    GREAT SHARE. This will help many people by telling your story! Bette

  2. maureen Avatar
    maureen

    Thank you Bette!

  3. Apaloosa1 Avatar
    Apaloosa1

    I diagnosed myself last year after doing research on auto-immune disease which I was diagnosed with in my twenties and Hypo-thiroid desease diagnosed in the last 5 years. My symptoms sounded like Hoshimoto’s disease, my doctor ran the tests and told me I should have been a doctor. If I had not suggested it Im sure he would have figured it out eventually maybe. My point is you must be pro-active regarding your health care. Sometimes go it alone because I have learned more about this disease from the people that have Hoshi’s than any doctor. Thanks for all the information and your own personal journey.

  4. maureen Avatar
    maureen

    Toni (?), Thank you for your comment! You are right – sometimes we need to move forward without the doctor if they won’t do anymore to help us. Good job! I did this with my daughter too. She showed all the signs of Hashimoto’s but here regular thyroid panel was “normal”. It took a lot of convincing but because I told her doctor that Hashimoto’s “ran in the family”, they were willing to give the test. It shouldn’t be so hard to get tested but the problem is that there is no benefit to them to diagnose you because there is nothing they can do for you from their standpoint (medicine). 🙁 Thanks again for the comment. Keep up the good work in your own health!

  5. kdj21368 Avatar
    kdj21368

    Strange I was just sitting in a doctors office and there was a video library and just happen to hear the same thing you just stated”Thyroid Medication -causes Bone to break down” And I thought to myself everything we do if just taking an aspirin has side effects, to the air we breathe. I found out a yr ago I had this disease, was told to take a pill everyday for life and everything would be better,NOT!! And everytime I have other issues I wonder if it’s from this disease? Seems like I have just went down hill-other health issues and seen a lot of doctors and they all think this pill fixes everything!! I believe unless you are walking in our shoes, others can’t even begin to understand. I had Cancer yrs ago was told I would not make it, and here I am 19 yrs later, I basically seen my life flash before my eyes,and I could tell you how scared I was etc, unless you were in my shoes you honestly could not even imagine what that was like, trust me no one understands, been there done that. Had a very bad car accident, and from these 2 major changing events I learned something and found some meaning in the end, BUT I will say I am not doing so well with this disease, not found a bright spot that’s for sure and I have always been a very strong person, but I have to admit this disease is kicking my butt! Just asking if it’s just me? I feel like some days it hurts to think, memory is worse, seems like my nerves are shot, pain seems like it’s magnified, and to not have people close to me understand makes it harder to cope with, so I am happy to see this facebook group. I do believe you have to take over on your health and this disease, don’t believe doctors can give the quality of care they once did, Insurance Company- Another big topic. Well I wish everyone well and keep posting and helping others

  6. Tammy Avatar
    Tammy

    I am still undiagnosed however I have every symptom of Hashimoto. When this all began I was exercising intensely and had been for years. My weight was always consistent and I ate a clean healthy non processed diet. I started with bloating once a month, then horrible monthly cycles where I would bleed uncontrollably and have to change my close quiet frequently at work and the pain was unbearable. Then I gained 10 lbs almost over night and had pain in my right side when I ate. My gynecologist wanted to do a full hysterectomy but I opted for the ablasion instead. The monthly cycles were better but I continued to gain weight and bloating became continuous. I looked 6 months pregnant everyday. I began feeling tired, and unable to workout without pain. I had numbness and tingling in my right hand, loss of balance, sore muscles and joints and stiffness to the point that I could not exercise at all. I began to journal the foods and pinpoint what caused the pain. I visited my primary physician and while she was awaiting results had to go to the emergency room for side pain. They removed my appendix and 6 weeks later still had all symptoms plus more muscle twitching, pain in right shoulder. When I went for a follow-up a hyda scan was ordered for my gall bladder. All came back normal but the surgeon wanted to remove the gall bladder. I went to a gastro and he agreed with the surgeon. I knew it was not my gall bladder because my side hurt when eating broccoli, cabbage, red potatoes, strawberries, oatmeal and brown rice. I decided to fix myself and during online research determined it must be a leaky gut. I went to another physician who said it was stress. ibs and gave me Zoloft. I knew I didn’t need Zoloft so I gave up on doctors all together, more determined to diagnose myself. I felt swollen and puffy, tired, muscle pain, body pain, weight gain. bloating, lip twitching and so much more. I felt crazy!!! but I knew this was not normal. I assumed it was fibromayalgia and went to a pain management clinic. They gave me trigger point injections and chiro care. Xrays did show I have 2 degenerated disk in my neck and 2 in my lower back. So nerve damage….. I decided to give up… Then about a month later the weight was still climbing. I went to a weight loss clinic. All labs normal but during the exam she mention my thyroid felt swollen on the right side. I told her every doctor I had been to since I was 19 had noticed it but the blood work always came back normal. She scheduled an ultrasound. So I just got the results back yesterday, 2 nodules but they are concerned about 1 because it has extra blood vessels? I am scheduled for a biopsy next week. The doctor told me all of my labs are perfect no abnormal thyroid levels. So… I wait but the emotional stress over the past 2 years has taken a toll. I just don’t know what is wrong with me. Sorry for the long post but I just needed someone to vent to. My family is tired of hearing it and I am told to just start working out again. It’s not all in my head and I would love to exercise. I do try but if I work out 2 days in a row I need a week to recoup. Any advice?

  7. maureen Avatar
    maureen

    Tammy – I am so sorry. I think you might like to listen to my podcast interview and see how many people are getting help outside conventional medicine. However, in your situation, I would ask the doctor if they have looked at your thyroid antibodies. I can’t stand when doctors say “all your tests are normal” but don’t give you the numbers! In the post I am referring you to, you will find links to a different type of doctor called a Functional Medicine doctor who looks at your whole body chemistry and finds a way to balance the system so all your symptoms begin to subside. As far as the nodules, I can’t comment on that as I have never allowed myself to have an ultrasound. I would if I was not getting better by natural treatments but for now, I am so pleased with the results, I don’t need extra stress. You also might want to check into getting this book which I highly recommend. You can get a downloadable copy for immediate access. Hang in there! You are not going crazy – you are dealing with a real condition that is not being addressed by conventional medicine – which is the real problem. If you can get to a better doctor, you may find validation there. Listen to my podcast and you will understand what I am trying to express. I hope you feel better.

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