My Thyroid Journey – Living with Hashimoto’s Thyroiditis
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More than 25 million Americans have some type of thyroid disease. In my case, I have been diagnosed as hypothyroid (under active thyroid) due to Hashimoto’s Thyroiditis, which is an autoimmune disorder where the body attacks the thyroid gland. In this post I’d like to share with you part of my thyroid journey.
Hashimoto’s Thyroiditis Diagnosis
In the fall of 2008 I was diagnosed with Hashimoto’s Thyroiditis. I had been having some symptoms commonly associated with hypothyroidism (cold hands and feet, fatigue, dry skin, some depression). I was not experiencing weight gain, but I was not losing weight, either, even though I exercise nearly every day. TSH and free T4 test results were high normal, but the antibody test for Hashimoto’s was sky high.
My thyroid is enlarged and has three nodules on it. Two ultrasounds about six months apart showed no growth in the nodules. They appear to be benign. My current doc has me get an ultrasound every 2-3 years to make sure they’re still behaving.
My Results on Levothyroxin
I visited my doctor in November to get my thyroid checked again. My TSH and free T4 levels had come back at the edge of high normal range and the doctor suggested I try 25mcg Levothyroxin daily. He asked me to retest TSH and free T4 in four weeks.
When I specifically asked the doctor about diet or lifestyle changes I could make to treat the underlying causes of my disease, he told me there was nothing I could do. I should just get on medication and resign myself to my thyroid eventually destroying itself.
My symptoms did not improve. In addition, I developed moderately severe joint pain in my right knee (this knee has bugged me occasionally but rarely this bad). During my menstrual period, I had severe cramping (much worse than normal) and felt physically ill for 2-3 days. I felt that I had difficulty concentrating, and found myself rereading the same paragraph over and over again. With no previous history, I developed gastric reflux and by the third week it was starting feel as though my throat was closing up and it hurt/was difficult to swallow. This was similar to the (I believe) allergic reaction I experienced on amoxicillin and prednisone.
When it came time to renew my prescription I decided not to do it. I called the doctor and canceled the blood work and notified them that I was going off the medication. We had no health insurance and I did not know when we would have insurance again. (Note – my husband was unemployed at this time. Stress levels were very high.) I told them that I would check back in sometime in the future. The doctor was not happy and instead wanted to increase my dosage, but I declined.
Once I got Off Levothyroxin
December 2009 – The throat swelling went away in under a week once I stopped the Levothyroxin. I am no longer having acid reflux. My knee does not ache excessively. My hands and feet still tend to be cold and my skin is still dry, but it has been very cold this month with record breaking snowfall (over 3 feet for December alone). I have started using coconut oil as a face/body moisturizer, too. My head is clearer and I am able to read normally again. My menstrual cycle resumed without any significant cramping/pain/fatigue, etc.
Trying Alternative Thyroid Treatments
I decided to try alternative thyroid treatments. After doing some research online, I continued to use NatraBio Thyroid Support tablets three times per day. My supplements included about a teaspoon of coconut oil three times per day, a Women’s Multivitamin/Mineral, 1000 mg vitamin C and 2000 2000 I.U. Vitamin D.
I have been starting each day with listing things that I am thankful for and practicing counting my blessings instead of my worries.
January 2009 – Symptoms are about the same – skin still dry, hands still cold – but, hey, it’s winter! Joint pain has decreased significantly. I am exercising every morning again.
December 2009 – I started dry brushing and cold rinses in the shower, and decreasing my carbs while increasing my fat intake after reading “Eat Fat, Lose Fat”. Over the month of December, I dropped ten pounds, even with the holidays. Skin is much less dry and itchy, as are eyes.
January 2011 – Down about another ten pounds. Recently read “Primal Blueprint”, and other material indicating that gluten may be contributing to my Hashimoto’s Thyroiditis. Working to reduce/eliminate gluten/grains in the diet, but I’m not there yet. I’ve changed up my work out routine, and started including “sprints” and weightlifting again. Still under a lot of stress due to job uncertainly. My skin is softer and smoother, and bowel movements are regular (constipation is a common symptom of an under active thyroid).
Eating for Thyroid Health
Where I’m at nutritionally:
- Plenty of fat, protein and veggies
- Less carbs, especially grains
- No refined salt, only sea salt
- Kelp, nori or other sea vegetables daily
- Coconut oil before every meal
- Limit cruciferous vegetables, and cook or ferment them before consumption
- Eat a Brazil nut every day, as they are high in selenium
- Consume one or more fermented foods/drinks per day, including kombucha, water kefir, milk kefir, sauerkraut, raw milk cheese, yogurt and other fruit and vegetable ferments
- Include turmeric and plenty of other anti-inflammatory foods and spices
- Avoid unfermented soy, excessive amounts of peanuts and raw cruciferous vegetables
- Processed foods, fake fats and all the other garbage passing itself off as food is a no-no
- Sourcing my meat and eggs locally, from people I trust. All of the critters spend time on pasture and are light on grains
- Grow most of my own veggies, and try to source the rest organically. Working towards the same with fruits
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Continuing on My Thyroid Journey
Since I wrote this back in 2011, I was able to find a doctor who finally listened to me and was willing to switch me to Armour thyroid. I felt even better, and lost a little more weight. For supplements, I use a probiotic, selenium, zinc, magnesium, B complex stress formula with C, and vitamin D3 in winter when I can’t get much sun. I don’t have any joint pain now.
I made some mistakes. For one thing, I think I overdid the kombucha, which led to candida overgrowth that threw my system out of whack. This in turn led to psoriasis over much of my body in 2015. Again, the doctor said, “Live with it”, but thankfully I got back on track again and am doing well. You can read the first post of that series, “Psoriasis – The Year my Face Exploded“. After that round of diet changes, I lost even more weight, even though my thyroid medication remained the same.
I had food allergy testing done, which flagged several types of beans, kale, pineapple and Brazil nuts. No more daily Brazil nut, and no more bean flour as a gluten free baking substitute, no more scrambled eggs and kale. Dairy and grains, which bother many people with thyroid conditions, didn’t show up on my testing. That said, because autoimmune conditions are commonly associated with a leaky gut, I still limit grains and dairy. It makes it easier to get more veggies in, which tend to be more nutrient dense, and I feel better.
Do you have a thyroid disorder? If so, what have you done to help your thyroid heal? I hope you find my story and these resources useful.
Additional Thyroid Health Resources
Some folks has asked for additional resources, so I’d like to recommend the following books that I found helpful:
Hashimoto’s Thyroiditis: Lifestyle Interventions and Finding the Root Cause – If you only get one thyroid book, this should be it. Dr. Wentz breaks down all the connections to thyroid health, and gives you tools you need to make lifestyle choices and ask the right questions to get the thyroid treatment that is right for you.
Iodine: Why you need it, Why you can’t live without it by David Brownstein, M.D.
I read Dr. Brownstein’s books first, and they opened my eyes to the importance of iodine. I’ve read some mixed reviews on Dr. Brownstein’s supplement recommendations, so please do your own research before making any decision to supplement and speak with a trained healthcare provider.
A couple more related books that deal with coconut oil that may also be helpful are The Coconut Oil Miracle and Eat Fat, Lose Fat. I know saturated fats are currently demonized, but I have lost weight on coconut oil, and these books explain why.
See also: Start Healing Thyroid Problems by Identifying Key Toxicity Sources
Originally published in 2011, updated in 2017.
well the best to u laurie. thanku for ur posts, website, fb.etc. u truly are a remarkably knowledgeable farm girl. I appreciate u and all ur work ethics. things work out w perseverance and educating ourselves thru research. being our own advocate. as far as thyroid nodules, sometimes they just show up w age. labs have a large range. gluten is the culprit. try kelp tablets, it may help. energy levels, eat every 2-3 hours a lil something, not past 4 hrs at a time or 5/6 small meals/d. eat whole foods. limit to no processed, refined foods. water, drink 1/2 ur weight in ounces. put in blender peeled lemon, 4 c.water, 1 TB each chia and.flax seed, turmeric etc. capsicum sprinle the spice on food. cinnamon to regulate blood sugar. antiinflammatory foods!!! look up candia and leaky gut syndrome. detox – all skin care products shld be natural. stress- things work out in time. gem
hi laurie, wow what a story! hope ur feeling better. ty for sharing.
gem
Most days are pretty good, but I’ve still got a lot of healing to do. I’ve started using my Herbalix Detox Deodorant over my thyroid area, and from the neck to the underarm, as well and the underarm and soles of the feet. I noticed there is more odor again, so something is shifting and clearing out. I’m planning to attend Magdelena’s Hashimoto’s workshop to see what I can learn. If I could just ditch some of the stress in my life, I think it would help quite a bit, too. I’ve been working on it.
I have been searching for a website such as this. I too have a swollen thyroid. I believe at times in the past few years I have had what they called thyroid storms. I will be in bed and my heart will start pounding like I am running a marathon. Then I am told it was a panic attack and it is all in my head.
I went for an ultrasound a few weeks ago. I do also have nodules on both sides. The thyroid surgeon stated that they have not grown much since 2008. My neck is visibly swollen at the base and there were 3 nights that it kept me up because I could feel my heat beat in the swollen area of the thyroid and it would feel like my throat was closing up.
Hi comments to me were (and I quote):
“there is no reason for biopsy’s because they are not reliable in instances like this”
“mine is not so bad as others and that I should deal with this for another year and come back to get another ultrasound done to see if the nodules have grown anymore”.
“That if I feel like I cannot breathe at night, he gives me his word that the symptoms are not from my thyroid”…..really??
I told him how uncomfortable my neck and throat feels and he smiled and said, yes it probably feels like a monkey around your neck doesn’t it? I was done with him after that comment.
Then he said that if I went home and thought about it and did not want to go through all of this, that he would send it through to my insurance to have the surgery to have the thyroid removed.
According to the thyroid tests they took at my primary doctor, they said that my thyroid was producing what it needed to do. I am lost at what to do now. I want to go for a 2nd opinion. Thyroid issues have run in my family (on my Mom’s side). But I also do not want a swollen neck either.
Need suggestions and help. 🙁
Sharon
That doctor (the one with the monkey comment) was a complete turd! Can you find an naturopaths locally? I’ve got a different doctor now, but she still hasn’t got a clue about addressing underlying causes. If you can’t find local help, you may want to look at Magdelena’s site, which focuses on healing the thyroid instead of just treating symptoms. She’s got an intro post here – https://commonsensehome.com/how-to-heal-thyroid-with-foods/
I need to update it with the current special, but if you visit her site she has all sorts on information and different programs available.
Thanks for the post. Its amazing how many people are suffering needlessly. I’ve been autoimmune since 1997, rheumatoid disease diagnosed first, in addition to type 2 diabetes (not autoimmune). Hashimoto’s diagnosed in 2003, however, I’m convinced it came first, and was undiagnosed for that long. I spent more than a decade on traditional treatments, began paleo eating in 2010, and started seeing a functional medicine doc mid 2011. By this time my gut was in bad shape, even after paleo for a year because I was still eating gluten now and then, so it’s taken until now to clean it up enough to begin metal detoxing. Having all metal dental work replaced this year. Another good resource is ” Stop the Thyroid Madness” site, http://www.stopthethyroidmadness.com
Thanks for sharing your story, Nancy. I hope removing the metal dental work improves your health.
I’ve been researching my own thyroid issue (Hypo) I religiously take kelp selenium and -Tyrosine, grow my own veggies, eliminated fluoride, cook my cruciferous veggies etc. But I have weight and other issues still though my energy is great. I am exploring the possibility that my estrogen and progesterone levels are out of balance. Phytoestrogens are everywhere (plants,pesticides in water, etc) even sadly in most beloved essential oils. Estrogen causes you to retain toxins and fat… it has good uses too, but those are the bad ones that result from too much. You may want to research the symptoms of having too high estrogen which complicates thyroid issues. Insulin responses, progesterone, estrogen, and testosterone rely on good cholesterol to be formed. Unfortunately if your body is inflamed by an allergy or you are stressed out, it skips making those hormones and concentrates on using its good cholesterol to make cortisol (fight or flight hormones that make you retain fat). Estrogen and testosterone can also be made by other body chemicals but progesterone can’t. It’s only made by good cholesterol. You may consider taking fish oil and vitex- an herb that balances estrogen and progesterone. Albeit only take Vitex when you are not on your period as higher progesterone is not needed by your body when it needs to release the egg and clean out the lining of the uterus. Weird I know but it may help you on your quest for hormone equilibrium.
Thanks for your input, Shannon. Unfortunately, I’ve been caught in a lawsuit over my mother’s estate for nearly three years, and my husband’s job situation has been unstable for even longer than that, so I do have a lot of stress in my life.
You sound just like me. I have been fighting Hypothyroidism for a long time. I go to the gym 5 days a week and work out hard. I need to lose 20 pounds and can’t. I go to a Bio-identical doctor which is awesome. He treats for natural replacement hormones and etc. He takes blood from you to run tests. I am hoping that He can get me right soon.
Good luck, Cindy.
I have no choice but to take a thyroid supplement. I started out with Graves’ Disease, which causes an overactive thyroid (hyperthyroidism). I didn’t not respond to medications to slow it down. Because my heart was also racing at a resting rate of 124 bpm, something HAD to be done to slow it and my thyroid activity. Like you, I was told there was nothing that could be done naturally, and that since I wasn’t responding to medication, I needed to have either surgery to remove the gland or a radioactive iodine ablation to put it out of commission. I chose ablation because that’s what my doctors said I should choose.
As out of control as my thyroid seemed to be, I am not sure if I could have controlled it with diet, but I didn’t have the knowledge then to even try. If I had it to do over again, I would at least try.
The worst of it all was the transition from hyperthyroidism to hypothyroidism. It happened over the course of a few months, but when you’re going from one extreme to the other, that’s very quick. I was miserable once I quit producing the thyroid hormone on my own but before the correct dosage of Synthroid was found for me.
I went through 3 endocrinologists and 3 family physicians before I found my current doctor, a female doctor of osteopathic medicine, who “gets it” that just because a TSH test is normal, that doesn’t mean all is ok, and just because all the thyroid results are normal, that doesn’t mean I’m right where I need to be. I bet you won’t be surprised to know that she has hypothyroidism herself.
All I can say is that if I knew then what I know now, things might be a lot different. Or not. Who’s to say? But I feel like I wasn’t given much of an option and that I was mislead into thinking the transition from one thyroid state to the other would be “no big deal”.
Hope you continue to have good luck on the natural path.
Annie – I really need to update this post. After hunting and hunting, I finally found a doctor who was willing to prescribe natural thyroid, and I responded better to that. Then, she retired, so I had to hunt down a new doctor. Luckily, a friend recommended a local osteopath, who was also willing to prescribe the natural thyroid. I just met with her last week and am back on my low dose. Right now I’m waiting for my levels to normalize again, because I ran out when I was hunting for a new doctor. In a couple of months I’ll get new bloodwork and see where I’m at. Thankfully, this doctor was willing to discuss free T3 and T4 levels and antibodies, not just TSH, so I am hopeful.
This was VERY interesting to me! I stopped taking Levothyroxine about a year and a half ago, and aside from a bit of weight gain(which with watching what I eat DOES respond rather well), I have not noticed a worsening of the initial symptoms. I too have begun using coconut oil.
It is so frustrating to try to find a doctor that will work WITH you–it was a red flag to be told “You’ll just reach a happy place with the medicine and be on it the rest of your life.” I’m sorry, sir, but that does NOT sound like a “happy place” to me!
Your blog is so informative and helpful; thanks for putting the time into sharing your experiences for others’ benefit!
~april
Thanks for your comments, April. I found a doctor I liked better, and then she retired, so now I’m trying another doctor in February. Hopefully this one will be more helpful! I did get on natural thyroid recently, and it helped me to drop more weight. Feeling pretty good overall.
Nadine – strength to you on your journey.
It's so frustrating to have one's symptoms and concerns dismissed by the mainstream medical community. They never want to admit that they can't heal you – ONLY YOUR BODY CAN HEAL ITSELF. At best, they can help your body heal, at worst…well, prescription drug deaths now outnumber traffic fatalities in the US – http://articles.latimes.com/2011/sep/17/local/la-me-drugs-epidemic-20110918
We have to be our own advocates, and find what works best for each of us.
Very interesting blog full of encouragement and help…just what I need right now…this is not foreign information for me…I have been sick on and off for several years and have healed myself several times over only to "return" to old ways and have symptoms re-appear…I am one of those people who need support and encouragement to be able to make it…
I am 43 with hyperthyroidism yet I am very over weighed…any time I have ended up in hospital they look at me and think I am hypo…but I always need to make a joke out of it and say no I AM hyperthyroidism without being thin. I fact everytime I got blood work done I was always extremely over the top…this was affecting my heart and that was the main reason for several 911 calls…surgeons want to remove my nodule and my right side of my thyroid promissing to leave the left side alone…in this last year I was able to totally get my blood levels to normal…my nodule is still there but I rub it with Myrh oil every single day…
One day at a time towards better health…oh…the surgeon was shocked with my blood results and said as long as I was "stable" he would leave me alone…ya right….too funny…
Nadine
I'm so glad that you feel better. Everyone is different, so it's important that each individual find out what works best for them.
Alternative health resources in my area are almost non-existent, but I have finally tracked down a doctor who is at least willing to talk about my history and symptoms and consider alternative treatments. I am sensitive to a number of different substances, so I suspect that had something to do with my bad reaction. As I said in the post, I don't believe are bodies are designed to fail, so I figure it's up to me to figure out what's causing the problem.
Thank you for posting this! I was recently almost not diagnosed with Hashimoto's. My TSH level was 4.5, and since we're trying to conceive, my fertility specialist put me on 50mg Levothyroxine. My herbalist/acupuncturist asked me if I'd been diagnosed with Hashimoto's, and I realized I didn't know WHY my level was high. A week later my dad called to tell me that my aunt had Hashimoto's and that I should get a test done. I called the office, and the nurse I spoke with told me that there was no way I had it, my levels weren't high enough. I didn't believe her, and later when I met with the doctor, he confirmed that it was, in fact, Hashimoto's, but only after I asked him specifically about the issue.
I've not had the negative effects that you have on Levothyroxine. In fact, as soon as I started taking the medicine I began to feel like I came out of a cocoon. I'm no longer as tired anymore, and not nearly as down. Someday, hopefully after we actually do manage to have children, I would like to move to a more natural method of treatment. It creeps me out that I would possibly need a man-made drug to survive in the future.
I don't know what kind of alternative medicine doctors you have in your area, but my herbalist/acupuncturist is super. I pretty much treat her like my primary care physician now and go into the "regular" doctor only when I know I need to. If my western primary care physician (who I really like actually) comes up with something to watch out for I make sure my herbalist is aware of the issue and she compliments my other treatment.
Pamela – thanks again for your thoughtful comments. Much of the information you posted is in the three thyroid books I recommended, but you certainly won't get it from most main stream physicians (at least I didn't). I asked about using natural dessicated thyroid supplement for just the reasons you mentioned, and my doctor flat out refused and said he would not prescribe it.
When I went in this past week to get an ultrasound and blood work, the only blood test the doctor ordered was a TSH check. I was so frustrated! And of course you can't get additional blood work done unless they approve it. I think I might finally have a lead on a physician who is more open to treating the underlying causes instead of just handing out more pills. I'll keep working on all of it until I find a better solution.
A few quick comments:
Synthroid is synthetic T4. T4 is only one of several thyroid hormones – the storage form that has to be converted before being able to be used by our bodies. Some hypothyroids have difficulty making this conversion so T4 only meds are ineffective in treating their hypothyroid.
Natural desiccated thyroid is a product that has been used for over a hundred years. The currently preferred brand for many people is NatureThroid (it used to be Armour until Armour Thyroid reformulated and became troublesome to many, many people). The problem is that most mainstream docs worship Synthroid and the TSH test.
To get a complete picture of thyroid function, TSH is inadequate. Free T4, Free T3 and the antibody tests give a much better view of what's happening with one's thyroid. Again, getting a mainstream doc to order these tests can be difficult.
Many people have found that iodine supplementation (in adequate amounts that are usually MUCH higher than those recognized as safe and necessary by mainstream docs) helps with thyroid issues. Good clean sources are important since much iodine is found in seafood that can be tainted by mercury. Iodoral and Lugol's Iodine are two good sources of iodine.
Another supplement that helps is Selenium. In addition, hypothyroids are often deficient in many vitamins and minerals beyond Selenium and Iodine. B12 is often low and needs to be supplemented with methylcobalamin form that is available to the human body. The cyanocobalamin form that is common in supplements is inexpensive and attractive to supplement manufacturers but it is ineffective in the human body.
Kathy – did you read the bowel movement post? (Now there's a sentence I never thought I would type…) I wonder if any of those suggestions would help. More fiber, which is commonly recommended for many conditions, may or may not be the best choice for you, as every person is unique. Do try and work with your doctor to keep your digestive system moving well, as that is a common area for toxin build up.
It's very interesting that you crave gluten, and could well be a symptom. As come folks have pointed out, many sources recommend eliminating gluten entirely from your diet if you have autoimmune thyroiditis. Reducing (as I have) is not likely to resolve the issue if you are gluten sensitive. I don't crave gluten, per se, as much as I crave carbohydrates, but even those cravings have been significantly reduced. Stress and less daylight are my big carbohydrate triggers.
I'm going to add links in the post to a couple of books that I have read that I found helpful. While they don't have all the answers, I do think that they are at least asking some of the right questions, which is a good place to start.
I have a friend with similar symptoms but she was diagnosed with PCOS. Maybe you might want to look into that too.
I have to write this down. I'm on 137 mcg of levoxyl, which I believe is high, higher than the girl I work with that has no thyroid! I started out much lower but gradually increased over the years. I had been feeling about 90 yrs old, couldn't concentrate, constipated, and sore. I do have arthritis but every joint had been sore, really it still is. I have to be careful with everything. I feel better now but still not right. My nails are very ridged, noticeably so. I tend to cut them very, very short- interferes with the keyboard at work anyway. My ob gyn said I do better on a low fiber diet even though my doctor says I need high fiber for the diverticulitis (which was probably caused by the thyroid constipation). I have felt gluten is a problem, I crave it, and form what I understand, that is a symptom. I'll have to try some of the things you are discussing. Thanks.
I should note, all other blood work was very "normal", and I do visit my chiropractor once in a while, who checks my blood pressure, which also looks good.
I believe the choices I have made would be helpful to almost anyone, regardless of the state thyroid and barring allergies or other complications, but please do your own research and consult a qualified health professional (if you can find one).
Laurie, I've got goosebumps. It sounds just like me, as I read. Up to this point – I had found common denominators with Celiac Disease. And like you – my doctor told me my levels were " on the edge, but more to the 'no' side " on my blood-work done for my thyroid. Gonna save your posting. The regimen you've posted will be very helpful! Thanks for taking all the time to share this!!!
It's not just me – autoimmune diseases have been skyrocketing. I'm working on a new post related to this. Still hunting for a good holistic practitioner in the area, but so far no luck. The folks from Herbalix have been an excellent resource for bringing my attention to a number of potential triggers with which I was not familiar.
Wow. I had no idea you were dealing with thyroid issues. Very interesting journey you're on…including the fact that going homeopathic has been healing, whereas traditional medicine would have been destructive. I really wish our area had more trustworthy, non-traditional practitioners, but I haven't found any other than our chiropractor. He does do nutritional therapy, too, though so let me know if you want his name/contact info.