Update as of summer 2014: My hair is falling out again and after being off Synthroid all winter, I started to lose my ability to talk in late Spring. This symptom used to be classified as a disorder called Myxodema, and I realized I do need medication. I got a prescription for Nature-throid, and continue to keep up my nutrition regimen. I feel good, albeit a little tired and have been losing a lot of hair. Lesson learned: Don't go off your medication on a whim. Someday when I can afford to see a holistic endocrinologist, I may try going off medication again. It worries me that my thyroid doesn't work at all. I'll update next Fall pending future bloodwork to see how Nature-throid is reflected in my TSH levels and whatever other tests I can convince my doctor to run.
My Story: A Brief Summary
I spent most of 5 years taking Synthroid 125 mcg/daily tablets, brand name (because Levo wasn't working to get my levels "normal.")
My doctor said it might be the highest amount she ever prescribed for someone.
I never researched Hashimoto's Disease when I received the "hypothyroidism" diagnosis. My doctor made it sound so simple. Take this pill. Your thyroid needs it. You'll feel better.
And I did and I think I did feel better.
But a few years later I began to wonder about the shared symptoms of hypothyroidism. My particular symptoms began (I believe) at puberty. I was eleven when I got my period.
My hair turned from wavy to curly that same year. I'd gotten a perm, but then I kept scrunching the new hair that grew. I used cakey gels like DEP and LA Looks. I looked great. My hair has been curly since then. I'm 32 now.
But by age 13 my hair was falling out in the shower, seemingly by the handfuls. It's a wonder I never went bald.
I was cold all the time, even with a heated waterbed and the heat cranked as high as I could get it in my room. If I warmed up, I became too warm and would sweat profusely. I sweat a lot in high school and had to be conscious of the shirts I wore because somedays I just could not understand why I was sweating at all. I wasn't on any medication. My diet consisted mostly of school cafeteria lunches and at home snacks like lays salt and vinegar chips, diet bubba, and ice cream. My mom sometimes cooked dinner. But most of my diet was junk.
I was irregular day to day, and had irregular periods, too. Emotionally I was rather subdued but comfortably awkward with people when the opportunity arose to talk to somebody.
Other symptoms that my hormones were off balance were things like excessive hair growth in undesirable places. I can only mention this now without embarrassment because it hasn't been a problem since I tweaked my diet this year by going "grain free."
I am technically following an AIP diet (AIP=Autoimmune Protocol) and I follow the guidelines in "The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body," by Sarah Ballantyne, PhD. I also follow Sarah as PaleoMom on FB and she has been posting amazing recipes to help people still have the meals they've always enjoyed with just a few slight (sometimes virtually unnoticeable) substitutions in cooking ingredients. For example, I now bake cookies and muffins and breads with things like coconut flour and shredded zucchini and bananas and honey. I roast vegetables and meats in coconut oil or beef broth. I have fish once or twice per week. I'd tried successfully to be a vegan for about a year and ended up going back to having small quantities of healthy-sourced meat (mainly fish) to help my body get the complete proteins I know it needs to heal my body's autoimmune disease.
Autoimmune Disease is really a disease of the body attacking itself because it cyclicly recognizes something as an invader. My personal theory is that I had to be triggering my body into this self-attacking state with something I did over and over again. And that was my diet. I finally recognized gluten as the invader.
Gluten has the same molecular structure as thyroid tissue. I am not the first person with this theory, but I believe my body has been mistaking gluten for thyroid tissue, and when it gets to the thyroid, my body attacks it, recognizing that it isn't performing like thyroid tissue should.
Not only gluten, but ALL grains were certainly making me feel tired. Even oatmeal and quinoa were triggering my sluggish feelings. They weren't giving me the energy they seemed to give other people. That's for sure. I now get my energy with nutritional supplements and a restrictive but very manageable diet.
Let me rewind for a minute. I tried a 30 day juice fast 18 months ago and that's when I went off Synthroid for the first time in 3 years, sheerly because I believed my body would get truly pure and cleansed if I was extremely restrictive to only having juice during my fast. I wish I'd known then to take a hemp fiber powder supplement since juice releases toxins but the body needs fiber to attach to the toxins and eliminate them from the body. I should have eaten a green salad once a day with the juice fast. Otherwise you just have toxins spinning around in your body, and it can make you more toxic than having them just stored somewhere.
After my juice fast ended, I got bloodwork done, and my levels were way off. My TSH was 246.28 (normal range is 0.35-5.5 uIU/ML) and my T4 was 0.23 (normal range is 0.8-1.9 NG/DL).
1. Enerfood drink powder (I mix with apple juice and some water and an additional scoop of hemp protein fiber which actually masks the fishy taste in the Enerfood dried seaweed ingredients). You could also blend Enerfood with a banana and even berries and an apple or whatever it takes to get the taste tolerable for you. I am almost at the point of mixing it with just water. My apple juice to water ratio has decreased over the last few months. My tastes are changing. Yours will too. But it will taste nasty at first. I swallow the following pills with my Enerfood drink:
2. Thyroid Strength - my most important pill, which contains things that healthy thyroids thrive on. Ingredients: iodine (10 mg/100%), Zinc, Selenium, Copper, L-Tyrosine, Holy Basil Leaf Extract, Senoril Ashwagandha, Root and Leaf Extract, Coleus Forskohili Root Extract, and Organic Kelp Powder. Good stuff. This pill ends up costing me about $1/day. I think its worth it.
3. Vitamins A, E, D, each in a separate pill form, but maybe you can just take a multi-vitamin. I don't know. I order my Vitamin D from Purity Products and had my Vit D levels tested recently and while most of America is deficient (under 30%), I was at 68% (in April after a long, cold New England winter!) I take Vitamin B using a spray bottle of methyl-B12 Liposome spray. Vitamin B is a serious vitamin for brain health. And one of my symptoms was brain fog. I've actually had extreme mental clarity since taking this Vit B spray. There is a holistic medicinal practitioner in my hometown of Tupper Lake, NY who sells this spray to me and has other good supplements. She knows her stuff. Privately message me if you'd like her contact info.
4. I don't take a Vit C pill. I bought a powder once but read something bad about absorbic acid being GMO or something. I don't recall. But the powder tastes horrible even mixed with juice, and I eat clementines almost every night. So I'm covered. I also eat plenty of other fruits and vegetables and many contain lots of vitamin C.
5. L-Tyrosine and L-Arginine. These are separate pills, but both are enzymes recommended for thyroid support. L-Tyrosine supports healthy mood and memory under stress, while L-Arginine aids in the flow of the circulatory system. Daily exercise is a must for Hashi sufferers, because very little of what nutrition we take in gets circulated when we don't move around enough. Using a feather or shower brush to brush up your skin in the shower (moving the brush or feather in the direction of your heart) stimulates the lymphatic system which stimulates blood flow. Sweating in a sauna is great. Taking a hot shower but making it cold just for a split second 2 or 3 times in the shower will also get your blood flowing. Wearing an ice pack on your thyroid will help stimulate it to do what its supposed to do. Being in a cold environment is actually good for Hashi sufferers, as it just helps push the thyroid to get with the program and do its job. The thyroid regulates metabolism and body heat amongst hormones and so many other things in the body that we need to do everything we can to give it the right tools and conditions to flourish.
6. Fish oil or Hemp oil - Depending on which I have, I take oil with my vitamins because Vitamin D is fat soluble and needs fat to be incorporated into the body well. I recommend Ruth's organic hemp oil, but it has been out of stock for a while now at iHerb.com. Since I started recommending these products on chat forums, I've noticed I can't buy them anymore! Sheesh!
7. Nascent Iodine - my recent bloodwork showed I was super high in iodine. I'd been taking 6 mg/day in the nascent dropper bottle form, plus I was getting 10 mg/day in my thyroid support pill form, along with iodine in my Enerfood seaweed powder drink mix, and Clean Chlorella seaweed tablets. My recent iodine level was 417 (normal range is 52-109 mcg/L). Yikes. I feel great but I decreased my dosage to 1.5 mg/nascent iodine with a half portion of Clean Chlorella seaweed tablets.
8. Clean Chlorella seaweed tabs - I was taking the suggested 25 tablets per day and now I take 10. They are super tiny and cute.
9. Daily Probiotics - I'm avoiding dairy as part of my protocol, but I do have a lactase supplement for the occasional cheat with cheese. I do miss out on the natural probiotics in yogurt unfortunately. So I supplement with my own homemade Kombucha. It is a mushroom you can order online. You put the mushroom in a glass gallon container with black tea and sugar. Look it up online. It's cool. The mushroom eats the sugar and turns it into healthy gut bacteria. It tastes good too. I also have probiotic pills. I usually buy whichever one is on sale in a health food store. If I'm feeling rich, I go for the bottle that says "billions." I think you get the most healthy gut bacteria in those large samples. I also make my own apple cider vinegar with infused spices and herbs. A sip a day helps with my gut bacteria. It consists of apple cider vinegar and ginger root, turmeric root, onion, garlic, habanero peppers, hot chili peppers, jalapeno peppers, and a squeeze of lemon and orange. I use a food processor to grind everything up so more surface area is exposed to the apple cider vinegar. I jar the apple cider vinegar and spices for a couple weeks then open, strain (or don't strain) and enjoy a spoonful a day or use as part of a marinade or salad dressing. I love the stuff and sometimes drink several sips throughout the day. Kimchi is another natural food probiotic. You can buy it in a health food store or look up a recipe online. It's basically fermented cabbage with ginger and garlic. It's good but you have to develop a taste for it if you're not used to spicy food. It will come with time and practice if you keep trying to eat spicy food. A little here, a little there. Just keep trying out garlic and ginger and hot peppers in moderation and cut up real small in food (or ginger root in tea or lemonade) and your taste buds will change. I promise. Your body in its own wisdom will learn to crave these new flavors.
10. Milk Thistle - This herb (or thistle, or whatever it is) helps detoxify and clean the liver. The liver's primary job is to clean the blood. All the blood in our body passes through the liver every 3 minutes. I also did a coffee enema once to cleanse my liver. I do not recommend.
11. Magnesium - I read up on just how important this mineral is for thyroid health, and how, like many essential minerals, the soils our food is grown in today are so mineral-deficient. I also recommend epsom salt baths which help the body absorb tiny minerals in the salt, such as magnesium. Taking epsom baths is very relaxing, and even comparable to taking a strong pain killer. It is vital you drink a cup of water both before and after the epsom salt bath because otherwise the salt will dehydrate you and you'll have a serious headache the next day. Trust me, I learned the hard way! Also, just use a half cup of epsom salt. The instructions may say to use 2 cups, but you don't need that much. Another way to get minerals is to drink mineral water or spring water (it has minerals from the rocks it touched, as opposed to distilled water which has no mineral content). And finally, use celtic salt or himalayan salt instead of regular sea salt. And you MUST stay away from iodized salt. The iodine is virtually not usable by your body in that form, and iodized/table salt actually leaches onto nutrients in your food and escorts them out of your body in the urine. This has been tested and proven. Be safe and only use Celtic salt or Himalayan salt!
ALSO: You might notice the green and white bottle called "Zeolite," which is a powder you mix with water to remove some heavy metals from your body. I take it from time to time. It is tasteless but has a slightly off-putting grainy texture. Its made of vulcanized ash that has a certain ionic charge to attract heavy metals in your body and carry them out in your urine.
ALSO: You might notice nuts in that little clear container. These are brazil nuts. A single brazil nut has the full daily recommendation of selenium, one of the most vital nutrients for thyroid health. I try to eat a nut or two a day, but it's hard because I had two fillings fall out last year and nuts get stuck in my tooth holes and hurt. (Update: I am now following AIP dietary restrictions and don't eat nuts anymore. I get my selenium in a thyroid support pill only, although there's probably some selenium in the many fruits and vegetables I consume.)
Symptoms That Disappeared
In treating my body as a system of interconnected systems and taking a proactive stance in my diet and vitamin habits, I no longer suffer from the following symptoms:
1. Losing hair in the shower - I lose only 5-10 strands per wash now, if that, even when washing my hair only 2-3 times per week.
2. Feeling cold and sluggish and tired all day long - And the lack of those symptoms alone is a great source of joy for me. What joy each new day brings now. I have such an energy and outlook now that makes me really believe in God and second chances and the good of humankind. I just feel so alive and happy.
3. Sweating profusely for no reason - I practically don't sweat anymore other than mildly during exercise, and I usually sweat equally over my body when I do, not so much in my armpits though. I also make homemade deodorant (coconut oil, cornstarch, baking soda, essential lavender oil). I haven't had an "unsure" moment for the last 6 months, no shirt stains, nothing.
4. Irregularity - The protein hemp fiber helps keep things moving through me. I never have diarrhea or constipation anymore. Unless I cheat. I recently had some stove-popped non-GMO popcorn kernels popped in coconut oil and then had diarrhea the next couple days. I have to treat popcorn as a grain, not a natural vegetable. Cheese is binding and causes constipation. I recognize I can't even get away with having a little bit of cheese anymore. And dairy can be harmful for people with an autoimmune disease. Sugar is a big no-no. As long as I stay away from these 3 main groups (grains, dairy, sugar) I feel great.
5. Emotional Meltdowns - I had silent internalized meltdowns my entire life that sometimes spilled out onto other harmless bystanders. Sorry if that was you! I've been mean to people in the store, drivers on the road, and just plain out had bitchy thoughts about people I didn't like and what should happen to them. Maybe this is partially a shared human thing, but I blame Hashi's. I don't feel that way toward anyone anymore.
6. Anxiety - I never thought I had anxiety until I recently started experiencing peace. I've had a wild ride this year, too. I lost my substitute teaching job in my little hometown where I was living comfortably with my parents, and then landed my first full-time teaching job at an inner-city high school in Providence, Rhode Island where I'd formerly spent 5 years living and working side jobs with my boyfriend at the time. It was during that time I shared his work benefits and got diagnosed with Hypothyroidism (specifically Hashimoto's Thyroiditis). Despite this career change and the stress it could involve, it really hasn't been stressful at all. I feel great and calm throughout the day. I sit back and take in the energy of my students, 11th and 12th graders. It's such a pleasure getting to know them and knowing they do work for me and learn something everyday. I sneak in some nutritional info and tips when I get the chance. I don't have the same socially awkward experiences I used to have. Conversations with faculty and students goes smoothly. I don't have those Homer Simpson moments of saying "doh!" mid-conversation. That used to happen a lot. It just doesn't anymore. I just feel at ease with people and myself.
Since thyroid support is so directly connected to the adrenals and hormones, I believe hair growth/loss along with emotional meltdowns/anxiety are all symptoms of hormonal imbalance and thyroid and adrenal malfunction. We know we have a hormonal imbalance by the sheer nature of the hypothyroid disease diagnosis. But I don't believe the thyroid is "broken" and needs a replacement hormone. The thyroid is simply "malfunctioning" because it doesn't have the puzzle pieces it needs to correct itself. The body is an amazing thing. Scientists are being baffled everyday by unexplainable stories of healing and recovery.
Most Recent Bloodwork (April 2014)
When I was initially diagnosed with Hashimoto's Thyroiditis in 2009, my TSH level was 16. Not too shabby, but also on the high end (a red flag for an underactive thyroid). However, since taking Synthroid for almost 5 years, the last 2 times I went off Synthroid my TSH tested in the 200's within 2 months of going off that pill. Holy Moses. My thyroid worked better BEFORE I took the prescription. I've since learned that the thyroid becomes dependent on Synthroid and fails to make any of it's own appropriate T4 etc hormones. NOT COOL. My mission now is to get my thyroid to function again like it USED TO before being given this uncool medication.
I stopped taking Synthroid twice in the past 2 years. Just to see what would happen. And here are my results:
My most recent thyroid bloodwork, taken 2 months after going off Synthroid once again in 2014, was "abnormal" but not as out of range as it was 18 months ago when I went off Synthroid. My recent TSH (April 2014) was 207.03 (as opposed to 246.28 18 months ago). I am optimistic my TSH will continue to lower and normalize this time. Many people with Hypo- or Hyper- thyroidism fluctuate high and low but my few readings over the years have only been very high. Still awaiting my original diagnosis bloodwork from 5 years ago to see how high my TSH was before ever taking Synthroid.
I'll update my story as it continues to unfold. Please check back to this blog entry in the future as I will continue to edit this post with new bloodwork and any changes to my vitamin regimen or diet protocol.
(Update as of July 2014: I read the book "Stop the Thyroid Madness, got my doctor to prescribe me Nature-throid, and have yet to build up my T4 levels. I'm on 65 mg now, which is considered 1 "grain" and I'll up my dosage by a half grain every couple weeks until I get up to 4 or 5 or 6 grains. I've been losing a lot of hair all summer, probably due to the on and off relationship I had with Synthroid this year).
I should mention I had a splurge of eating some candy and drinking a single (sugary) margharita last week over the course of 2 days. I noticed much more hair falling out in the shower and my feelings of sluggishness took over. I stayed in bed until nearly 2:00 that Saturday afternoon. I felt like I hated the world. It took me nearly 4 days of getting back on track with my diet and vitamins to feel back to my new normal. I never want to go back to feeling sluggish and lazy like that again. I can't believe I lived that way for so long. Very sad.
Most Recent Bloodwork (April 2016)
I'm still on Nature-throid, though I'd switched pharmacies for a few months and was on WP Thyroid (Walmart) for a little while but back on Nature-throid now. My TSH this April 2016 was 0.02 and I was feeling manic. My doctor lowered my dosage from 130 mg to 65 mg. I'd made some drastic lifestyle changes these past 8 months, including the complete giving up of alcohol and processed sugar. All this was spurned by a grand mal seizure I had in September 2015. Since my dad has epilepsy, I was diagnosed likewise and given a medication called Keppra, and didn't like it, and since changed to Topiramate, which helps me sleep better than the Keppra did. So now I take Nature-throid 65 mg each morning, and Topiramate 25 mg (half pill a.m. and p.m.) I've removed all stress triggers from my life, including work, toxic people, toxins (I use beauty care products by Pure Haven Essentials now) and get to bed at a decent hour. I can't be in the sun much anymore, which sucks, but is probably better for me anyhow since I'm a pasty Irish girl. See my more recent blog entries to see how I'm doing. A lot has changed.
