AHHHH...RELIEF!!! OMG!

How is everyone pooping these days?

I guess I shouldn't start there. Let's start with background so those of you who are tuning in late will have some kind of context. 

I have Hashimoto's Thyroiditis, an autoimmune disease that causes your body to attack the thyroid gland causing all kinds of misery. Couple that with MCS and thyroid prescriptions make me incredibly ill with side effects that match if not exceed the symptoms of Hashimoto's. I've spent a good ten years managing this illness with diet and lifestyle only. For the most part, it's worked out really well. However, I've read too often untreated Hashimoto's can cause significant kidney, cardiovascular and vascular problems. I've been expecting death any day now. It's not a good mindset.

So...about four years ago my colon abruptly stopped working. I've always believed a properly working colon is the foundation of good health. I had never in my life had any kind of constipation, let alone what doctors love to call "chronic constipation" so this was shocking. And scary. The pain landed me in the local emergency room and then over the course of the next three months I saw another fifteen different health care providers: conventional MDs, naturopaths, functional medicine doctors, nurse practitioners and one colonic technician as I desperately searched for a solution. Over the next FOUR years I added four more health care providers to the list and I subjected myself to thousands of dollars worth of testing hoping to get answers to why this was happening. And for my time, money, and trouble, I received NO answers, NO solutions, NO help.

I tried every home remedy, dietary remedy, and nearly every over-the-counter remedy with no success. I even tried very expensive colonics every couple days mostly to relief the pain, but I really hoped it would jump start my colon into working again. My colon would not work. I asked a friend, "Where does all the ruffage go if absolutely nothing comes out the other end?? After all, I am eating!" Well, until I started a liquid diet out of desperation. She didn't know.

I did read on a few websites that claimed the colons of some people never work. Nothing works. They end up with a colostomy bag after too much chronic constipation damage. Oh great....

Several people suggested I try Miralax. I had been afraid of Miralax. It says right on the label, "Do not use if you are allergic to polyethylene glycol." 

I had no idea what polyethylene glycol was, but I'm chemically sensitive and "allergic" to every medication known to womankind so this did not give me comfort. (Note: Polyethylene glycol is the reason some have life-threatening anaphylactic reactions to the COVID vaccines.) Still, I was desperate. I threw all caution to the wind and tried it as a last resort. It worked! Besides anaphylactic shock, Miralax is known to cause gastrointestinal problems including stomach ulcers, kidney damage, and OCD, aggression and psychotic/personality changes in children. I was convinced Miralax would kill me, but what choice did I have? Between the Hashimoto's and the Miralax, I was doomed.

Constipation is a common Hashimoto's symptom. After a year of intermittent shutdowns and startups, my colon finally found a schedule of sorts: it would stop working in the fall when the weather cooled (around October) and miraculously start up again in the spring (around March). This is typical of thyroid function anyway...in the winter months during colder weather the thyroid slows down even for people who have no thyroid issues. This is why so many become slightly lethargic, eat too much, pack on the weight, and basically hibernate. Hmmm...so is my non-working colon just another symptom of Hashimoto's? How do I get my thyroid functioning without poisoning myself?

I presented my theories to many of those health care providers. Most just looked at me like deer caught in headlights not knowing what to do with a patient who needs drugs, but can't take them. Some treated me like everything I said was a lie or argued with me insinuating it was all in my head. No, you couldn't possibly have problems with thyroid medications, and no, Miralax is very inert and healthy after all it's given to children as well as quadriplegics and paraplegics who have no colon function. One medical doctor with an office lined with credentials told me he didn't know if constipation was a symptom of thyroid disease. Morons have taken over the medical system yet I am expected to pay these people for an appointment! Orange fucking cones.

Faced with the incompetent American health care system, I realized I had to figure this out myself because no one was going to help me. I went to an acupuncturist. Maybe he can jumpstart the thyroid by poking needles in the nerves? The second treatment made me violently ill for two weeks as if it triggered an autoimmune attack. The fact that it triggered an attack indicated it did something, but it was too much and too much money if I wanted to maintain the treatment and experiment. Besides my colon was not amused. It refused to do any jumping.

In the meantime, my stomach was ripping with pain, my back hurt right around the kidney area, and my blood labs showed I was at stage three kidney disease...in March. In September after six months not taking Miralax, my kidneys went back to looking fine. Miralax was killing me. I was desperate now. I was depressed and anxious. I was afraid. If nothing works, this was definitely going to kill me!

I decided to try one more idea for a thyroid prescription. If I could control the amount of drug I take, maybe I could tolerate a little at a time. All I need is enough to make up for thyroid drop during the cold winter months. Maybe that would do the trick? I'll need a compounded prescription with no fillers, no additives, no flavors, no scents. Topical drops for my skin. Then I had to find a health care provider who would prescribe compounded drugs. This was nearly impossible. Most of them argued with me saying I wouldn't get enough absorption and ignored me when I said, "That's the point [ORANGE CONE!]." (See my post on orange cones.) Even one of the compounding pharmacists argued this point! Orange cones are everywhere.

I finally found a naturopath who claimed she had compounding pharmaceutical experience. Bottom line, she was willing to prescribe my idea, or so I thought. First, it took six weeks to get an appointment with her. Second, it took her seven more weeks to call it in to the pharmacy. She doesn't understand I'm on a timeline and need the drug before the weather cools. Third, she failed miserably at listening to me and prescribed it incorrectly because although she might have minor experience with compounding drugs, she has absolutely no experience with MCS. Fourth, the pharmacy mixes it wrong adding fillers I can't tolerate and even using the wrong dosage!! Really? After a dozen conversations they still get it wrong???!! Finally, after four months of struggling at every turn, I get the correct prescription. I mark on my calendar six weeks because that's how long it takes for thyroid drugs to affect one's thyroid levels. 

I started with one drop of Levothyroxine under the arm every three days because it's usually the second and third day when I get sick. The first week I start taking it, my colon STOPPED working! Fall is here! The weather cooled. UGH! I was disappointed it took too long to get the prescription, but I hoped continued dosing would still my raise my thyroid levels. I was praying for a miracle. 

In the meantime I unfortunately read more on Miralax about the lawsuits against Bayer Corporation attempting to get Miralax banned in the US or at least labeled correctly. "Do not use if you have kidney disease..." Yes, they boldfaced those words on the container. Great.  Miralax is killing me. This experiment has to work. I am hoping the thyroid hormone supports my already stressed kidneys caused by hypothyroidism and makes my colon miraculously start working so I can stop poisoning myself with this so-called "inert" over-the-counter medication that activist groups are trying to get banned in the US. I can dream can't I?

I also considered if it doesn't work, I think my only option left is to move to Mexico....near the equator. Warm weather year round. My thyroid would love it, but can I get good, organic, wholesome food in Mexico? I hope so. Hasta la vista, baby!

The one drop dosage every third day seemed fine, but I was eager and impatient to get more assimilated in my system. How to increase the dose and still avoid side effects?  I tried two drops every third day and I was hit with severe nausea, dizziness, back and neck pain, headaches, fatigue and depression. I tried one drop every other day, but on the "off" day I was hit with debilitating fatigue causing me to sleep all day. I pulled back and went back to one drop every three days and let my body recover. Then raised it again to 1/2 drop every other day and decided, well hell with the fatigue, take it at night and get tired while sleeping. This seemed to work. Common practice is to take the medication in the morning before one eats as it won't assimilate correctly if food is in the stomach. I wasn't digesting it anyway. I just needed to somehow get it in my system while avoiding the side effects that are debilitating.

At five and a half weeks, MY COLON STARTED WORKING! OMG! 

At first I was in disbelief. Could this be true? I didn't trust it. After four years of hell, have I really discovered the secret? The cure? The remedy no idiotic health care orange cone's brain could comprehend? I very carefully weaned myself off Miralax and waited. My colon kept working. OMG! The more thyroid I take the more motility I get, but it comes with the risk of overdosing side effects. The key is balance!

I AM SO HAPPY AND RELIEVED!! (Pun intended.) 

A week later it stopped. I started doing some cleanses to mitigate the kidney damage (back pain) and that will often slow down a colon. This was probably done too early as I should have waited for the colon to regain a happy normal. I persisted and hoped for a rebalance. I also worked up to two drops every night (10mg.) and after a few days my colon started working.

HOORAY!

Acupuncture

I managed to avoid all health care for exactly one year. It's a huge savings especially since the previous three years was such a drain on my bank account. Acupuncture was the only thing I hadn't tried although I did acupuncture many years ago. It was painful. I think she hit a nerve. And I'd bled. It seemed really wrong and it didn't seem to improve anything so I stopped.

About a year ago when in the throes of a non-working colon I went to the local "commune" style acupuncture clinic. This is where you pay a fraction of what an acupuncture treatment would normally cost, but you are in a darkened room with a bunch of people. It was kind of creepy. Every needle was painful, but I laid there obediently praying the time would fly. It didn't. It was the longest half hour of my life and I couldn't wait to get out of there. The acupuncturist said it could be his technique. I assumed he was a newbie.

I looked around for other acupuncturists but most of them do all kinds of fancy, expensive add-ons using moxa which is some kind of smelly thing. Others use incense, essential oils or have other herbal products that stink up their offices. So I gave up and waited.

I wanted to give acupuncture a serious try. I've read on numerous sites it can help with thyroid dysfunction and autoimmune diseases. Since I can't do thyroid medications, I wanted to find something that would get my thyroid working on its own without inciting any kind of autoimmune attack. Most supplements incite attacks.

I found this guy who didn't do herbs or incense. He said he did moxa with some patients, but I opted for the first appointment of the day when the office wouldn't be contaminated. His room smelled fine. I checked out his bathroom before I made the appointment. It's a bad sign when a bathroom has air fresheners or scented soap. It screams UNENLIGHTENED. His bathroom smelled very unscented and clean.

The first appointment was kind of fun. He reviewed my health history, we discussed diet. He said he thought I had a yin deficiency and a yang deficiency and he listed various foods that would support health. This gave me hope. He is the only health care provider who seemed to have a theory for my full-body inflammation and my digestive problems. He asked if I could do the rubbing alcohol he uses to sanitize skin, but told me it wasn't necessary. I appreciated his awareness and thoughtfulness and say, "No thanks. It stinks." At one point he discussed how fear can affect our health in various ways. As I laid there pondering silently why I would be in fear, he said, "It must be frightening to walk into a location or room and wonder if you are going to be poisoned." Wow. He seems to have more of a grasp for my chemically sensitive situation than I do. I was quite happy with him.

I'm very sensitive to everything around me so discomfort wouldn't be a surprise. The first needle he stuck in me inspired a loud, "Ouch" and he removed it opting for some kind of weird band-aid needles that just sit on your skin. Even some of those felt like a bee sting and for the next few days I felt like I had a sliver embedded in my skin. He did some acupressure, kept checking my pulses, looking at my tongue. It was fun. I liked the heater on my cold feet.

I didn't feel any different. At least it didn't make me feel worse. He said it usually takes 3-5 visits to notice a change. OK. I was hopeful.

At the second appointment I arrived early as usual. After an hour and half drive I always have to go to the restroom. It stunk like a toxic waste dump. What the FUCK? So what do I do? I can't lay around with needles in me while my bladder feels like it's exploding and I can't leave and find another bathroom or I'd be late. I peed as quickly as possible, holding my breath for as long as possible. It bothered my lungs but I didn't feel sick or anything.

I lay on the table and before I even know what is happening he swabs me all over with rubbing alcohol. Damn. He does a variety of extra things, more than what he did the first appointment, but he did inform me he is being careful not to overdo it. He also contradicts nearly everything he said during the first appointment, especially about diet. Hmmm...maybe he's having a bad day. It is, after all, his first appointment on a Monday morning.

After the appointment I have to pee again so I find a bathroom in a store. It has air fresheners. Damn. So that's three exposures in a matter of an hour. I'm starting to feel really lousy. I start feeling really hungry. Quadruple damn. I ate a salad for breakfast with no protein and since it's been too long since I ate it and I start to feel it. I get something to eat, but I fear I waited too long. Thirty minutes after the acupuncture treatments, the headaches start. By the time I get home I feel sick, light-headed, joint pain, and I crash. I can hardly sit up due to exhaustion. The migraines become unbearable.

So what happened and what is causing this, my constant question? The usual suspects are the exposures...or the acupuncture. The exposures wouldn't exhaust me. More importantly, I'm ravenous. I can't go an hour without food or the headaches, nausea, and exhaustion return and become debilitating. These are thyroid symptoms, not MCS.

The night before my next acupuncture appointment I am thinking maybe I should give it another try to confirm what my instincts are telling me: the acupuncture treatment worked...it revved up my thyroid too much causing an autoimmune attack. I've been exhausted and sick all week. I don't like the idea I'd have to leave not 1 1/2 hour for the drive, but I'll have to add another half hour to find a suitable bathroom. I'm feeling stressed and angry about this appointment. If it is the acupuncture, I don't want to go through that again. I call and cancel.

At this point I'm convinced it was the acupuncture. I was sick for three weeks before I started feeling better. I might wait a bit and try it again, but three weeks of hell isn't worth another experiment.

That was my last health care option. I'm out of ideas.

Menu Samples for the Paleo/Hashimoto's Diet

Every now and then someone asks me what I eat and since this changes from time to time depending on what I've added or restricted in my diet, I thought I'd update.

Below are lists of meals. All food items are organic, healthy, and natural with meats grass-fed or wild-caught. There is no such thing as a specific breakfast, lunch, or dinner dish. I eat whatever I eat whenever it feels right. These meals are in order of most often eaten, followed by snacks, treats/cheats, and drinks.

MEALS:

Mixed Salad with Lettuce, Avocado, Carrots, Zucchini, Sweet Peas, Basil, Red Peppers, and Orange/Lemon Juice Dressing.

Hamburger Patty with Jalapeno Peppers
Original Sauerkraut
Spicy Garlic Sauerkraut
Onions
Avocados
Olives (sometimes)

Baked Cod or Salmon *
Broccoli or Carrots or Peas or Mixed Vegetables

Baked Chicken with Tarragon and Olive Oil
Delicate Squash or Olive Oil-Fried Zucchini

Baked Chicken with Beans, Potatoes (sometimes), Garlic, Olive Oil, Lemons

Chicken with Broccoli, Beans, Red Peppers, Onions, Garlic, Basil, Coconut Milk, Chile Flakes *

Pot Roast with Carrots, Onions, Garlic, and Celery
Delicata Squash

Chicken Soup with Carrots, Celery, Garlic, and Onions

Sauteed Prawns with Onions, Red Peppers, Basil, Garlic and Coconut Milk *

Hamburger with Red Peppers, Onions, Jalapeno Peppers, Garlic, Zucchini, Cilantro, Oregano, Cumin, Chili Flakes, and Cayenne Pepper

Salmon Salad with Olives, Basil, Garlic, Canola Mayonnaise, Green Onions, Avocados and Lettuce

Chicken Salad with Chicken, Celery, Onions, and Canola Mayonnaise on Lettuce

* About once a month I eat rice with one of these meals. And you'll notice some of the not-so-Paleo foods below. I found if I don't eat some carbohydrates, my body stops digesting fat. Strange I know. I started losing a lot of weight, but I worried about not getting enough fat soluble vitamins, too. I spent way too much money on doctor's who had absolutely no clue why I wasn't digesting fat and finally figured it out myself through experimentation. So now I eat carbohydrates every now and then, not often: rice, popcorn, corn tortilla chips, potatoes.

SNACKS:

Apples
Almonds
Almond Butter
Blueberries
Blackberries (in season only)
Raspberries (in season only)
Plums (rarely, in season only)
Apricots (rarely, in season only)
Oranges (rarely)
Fresh Figs (rarely, in season only)

TREATS and CHEATS: 

Apple Crisp (Apples, Lemon Zest, Almonds, Coconut, Coconut Flour, Butter, Vanilla)
Blueberry Crisp (Blueberries, Lemon Zest, Almonds, Coconut, Coconut Flour, Butter, Vanilla)
Unsweetened Carob Chips (trying desperately to break this habit)
Yogurt (currently trying to replace carob with yogurt)
Corn Tortilla Chips (rarely)
Popcorn (rarely)
Watermelon (rarely)

DRINKS:

Water
Peppermint Tea
Fresh Lemonade

The Perfect Diet (For Me)

I've been asked about my diet and what I eat. After perusing the too many posts I've written on what I eat, how I eat, how it's changed and what does/doesn't work, I realized I really don't have a clear list of foods and practices. Granted, this is because with all the dietary experimenting I do in hopes of discovering the secret to perfect health, the list gets tweaked all the time. (I'm tweaking it as I speak....) However, this is my basic diet followed by the "rules."

Meat:  Cod, salmon, beef, chicken, lamb, turkey, chicken liver, oysters, tuna

Fruits:  Apples, oranges, avocados, lemons, pears, grapefruit, limes, coconut, grapes, watermelon, cantaloupe, blueberries, raspberries, blackberries, strawberries, plums, prunes, cherries

Vegetables:   Lettuce, spinach, arugula, dandelion greens, onions, garlic, peppers, cauliflower, broccoli, carrots, celery, squash, peas, green beans

Herbs and Spices: Oregano, basil, cilantro, thyme, black pepper, Himalayan or Celtic sea salt

Nuts: Almonds

Oils and fats: Olive oil, coconut oil, butter, avocados

Other:  Coconut milk, peppermint tea

Notes:

Do not overeat. It creates inflammation and stress on your body triggering autoimmune responses. Eat every two hours to avoid blood sugar fluctuations.

Eat 80% fresh produce (if possible), 20% meat and everything else. Must have a little protein with every meal to stabilize blood sugar.

All food must be organic and fresh. No canned, packaged or processed food.

All meat must be grass-fed, organic or wild-caught. I stay away from canned meats but on occasion I eat tuna. I buy only gluten free, wild caught tuna. Don't trust big-box grocery stores even if they claim it's healthy. Find a food co-op or source you can trust.

Stay away from pork and shellfish because they are toxic. I cheat with oysters but only because I've been told they are the cleanest shellfish and I live in the oyster capital of the world. I don't eat them often, and I don't have problems when I do.

No grains of any kind.

No gluten. Watch for hidden gluten in makeup, body products/lotions, chap stick, hamburger, spices, canned anything including tuna, supplements and thyroid medications.

No dairy.

No sweeteners of any kind including high glycemic fruits: dried fruit, mangoes, bananas, papayas, etc. as they are just as bad.

No high starch vegetables: potatoes, yams, sweet potatoes

Avoid or rotate goitrogens like broccoli, kale, cauliflower, or Brussel sprouts as they decrease your thyroid function. I rotate these things and cook them as cooking decreases the goitrogenic effect.

No mushrooms or fungi.

No legumes like peanuts, beans, lentils. (Fresh green peas and green beans are fine.)

Avoid lectins like tomatoes, cashews, beans, peanuts, potatoes, sweet potatoes, corn, bananas. Remove peels from fresh fruit (apples) and if I cheat with potatoes or sweet potatoes, remove the peels. This decreases the amount of lectins.

Drink as much water as possible with the goal of reaching the required number of ounces (your weight x .67 = number of ounces per day). Preferably clean water with natural minerals like artesian water. This is important for detoxification and hydration. 

Yes, now and then I cheat. And I pay for it. Sometimes.

You're NOT Crazy and You're NOT Alone

The title of this post should be the mantra of everyone with MCS, however, it just happens to be the title of the latest book on Hashimoto's Thyroiditis. Unlike most other Hashimoto's books that explain in detail what is happening, how it is happening and why it is happening, this one refreshingly addresses the emotional and mental challenges faced by those diagnosed with this debilitating condition.

Naturally I was skeptical. I was anticipating another dry, scientific consumer health book. Yeah, I know about the TSH labs and the T3/T4 conversion and the adrenal connection and the five hundred supplements I should be taking. I even know about the miracle diet. When one has years of first-hand experience with Hashimoto's and has read nearly every book on the subject, finding new information is rare. Most books say the same thing over and over again boring me to tears. I'm very happy to say I actually learned something new with this book and it was surprisingly entertaining! Thank you Stacey Robbins!

Author Stacey Robbins is writing from her own personal experience and right away claims she's not a doctor nor a scientist. She doesn't even pretend she has any authority on the subject other than her years of suffering. She is sharing and that's all. I love people who share! Her writing style is conversational and at times hilarious. The text is broken into short digestible paragraphs and more often single sentences with double-spaced lines for conversational emphasis. It's rather creative and makes the book really easy to read. It feels fun and her stories are often charming, but I have to admit I felt irritated by the style at times. She often babbles and constantly says, "But I digress..."  I also didn't care for the constant references to religion and often found myself skipping over anything that looked like God talk. I skipped over most of the chapter on supplements. Still, overall I liked it anyway. She confesses dietary challenges, weight gain, bathroom traumas, child abuse, crippling exhaustion, and bad doctor experiences. Commiseration is easy and more times than not I was overwhelmed with the feeling finally someone who understands me! Hence the title, You're Not Crazy and You're Not Alone. It doesn't matter if I know thousands of people out there have MCS or Hashimoto's, I always think I am alone with my experiences. I'm really not!

Here are the highlights I found especially enlightening:

She calls bad doctors "Orange Cones". You know, the construction cones that are put out to warn and protect you from dangerous situations. LOL Her advice on how to handle bad doctors...go around them! They are only obstacles on our paths to finding quality information. "Orange Cones don't do the work. They simply point to you, in their bright orange color to 'Go around.'" She suggests as a path to forgiveness to take them "out of the "The Asshole Who Didn't Help Me" category and put them in the "Orange Cone" category". She's heavy on forgiveness which I also found a bit irritating.

Fettuccine Alfredo is a "formula for weapons of mass destruction."

"If you eat that way with Hashimoto's and it's not your last meal, you'll kinda wish it were."

Most people with Hashimoto's have been abused as children and experienced love patterns of rejection.

Perfectionism is a side effect of child abuse, but it is a form of self-rejection.

Most people with Hashimoto's were in a car accident or experienced whiplash just before they were diagnosed. Hmmm...now that is interesting.

People with Hashimoto's don't like water. Sometimes it makes them sick. Consequently, dehydration is a common problem and contributes to EMF sensitivities. Anxiety is a symptom of dehydration.

People with Hashimoto's have severe mitochondrial dysfunction. Our cells aren't working optimally and that makes exercise difficult. Mild exercise is good; strenuous exercise is a trigger for an autoimmune response and it weakens the immune system.

She talks about walking as the perfect exercise for Hashi's people, but she says resist the urge to run. "Let go of romantic notions of what looks good." (Too bad I didn't read this book before I got the bright idea to jog last year! It might have saved me a whole lot of misery.)

Synthroid (thyroid medication) has gluten in it! WHOA!

Flappy, wiggly underarms are a symptom of hypothyroidism and adrenal fatigue! She calls them "lunch lady arms". HA! That's probably not a nice thing to say, but I thought it was funny.

Soy pulls iodine from your thyroid.

People come into your life to give you gifts of information.

She uses bentonite clay for cleansing especially if you eat something bad and need it expelled quickly.

Jin Shin Jyutsu is a Japanese modality of healing, or energy work. It sounds fascinating and I already believe our bodies are total health systems. I need to do some research into this...

She's big into gratitudes. I like people who focus on being grateful.

A lot of her information is directly related to MCS and at times thought I was reading a book on chemical sensitivity. I believe it's all related anyway.

HOORAY!

HAPPY VALENTINE'S DAY!

The Reality of Autoimmune Disease

This is an awesome article about what it's like to have an autoimmune disease:

 

http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me

 

 

 More specifically, what it's like to have Hashimoto's.

 

Love her writing style and her turn of words:

 

“…multiple autoimmune diseases - each slowly developing, in sequence, like a garden coming into terrible bloom.”

 

 I can totally relate to her experiences especially the incompetent doctors and loss of self.

 

I cried my way through the whole article.

 

I get it.

ARE YOU LISTENING TO ME??

My latest doctor I first saw about five years ago. She loaded me up with pills and I had bad reactions, of course. This time I spent almost an hour explaining in detail how I seem to have an intolerance to drugs of any kind. Did she listen? She seemed to get it, and we talked at length about alternative dietary treatments, but she also slipped in a few drugs just for the fun of it. I should have stood up and screamed immediately:

ARE YOU LISTENING TO ME? 

But I didn't. I looked at the new drug, Low Dose Naltrexone (for inflammation) and with much anticipation for a miracle cure said, "YES! Let's try it!" I have realized this is how I contribute to the problem. They don't take me seriously because I give them conflicting messages.

However, this time I didn't jump on the drug bandwagon quite as enthusiastically as I have in the past. I AM learning! I ordered only two weeks worth of the LDN, just as a sample. On the third day I started having side effects: hip pain, neck pain, weird dreams, sleep problems, nausea, sweating, migraines and BRAIN DEATH. I lost all short term memory capabilities. And I was taking only one third of the recommended dosage. That stopped immediately.

Next I thought I'd try the Siberian ginseng from her list. This is to support the adrenals as the new doctor seems to think I'm having drug reactions because of adrenal fatigue. It is a common theory in the world of hypothyroidism that if your adrenals aren't working optimally, the thyroid drugs won't either or might cause problems. Still, I wasn't buying that adrenal fatigue was the cause of my drug intolerance.  First, I've treated any adrenal fatigue problem I might have before and it doesn't stop the drug intolerance problems nor does it make a difference with anything. Second, it's not just thyroid medication I have problems with. Third, I'm chemically sensitive and I am intolerant to drugs. Fourth, my DNA testing showed I have a gene mutation that causes detoxification issues which contributes to chemical sensitivity. The interpretation of my gene mutation clearly states I have a problem detoxing pharmaceuticals as does my latest gastrointestinal test. This seems clear to me. I can read these test results. Why can't she? I tried to explain this to the new doctor. Her response was, "I'm not sold on all this DNA testing." Again, I should have stood up and screamed:

ARE YOU LISTENING TO ME?

Still, like the brain-dead patient I am (due to previous drugs), I dove right in and decided it's a good idea to poison myself again. However, I AM learning. I didn't buy pills. Instead I found an herbal shop that sold the real root for tea. I wasn't sold on the Siberian ginseng, but what I didn't realize is I have notes from taking it a few years ago. In my (faulty) recollection, I thought I didn't have a problem with ginseng. However, on the third day I had slight neck pain. Didn't think anything of it. The next day unexplained fatigue followed by slight depression, but again, I passed that off as minor as could have been caused by anything. I am my worse nightmare. I don't even listen to myself! I ended up running out of tea only to buy more and start again. The fatigue became unbearable with headaches, weird dreams, and extreme dizziness if rising too fast while gardening. Finally, I found my Siberian ginseng notes from a few years ago...same reactions then, right down to the bizarre gardening-induced vertigo.

I emailed the new doctor and explained AGAIN about my intolerance to drugs of any kind. She suggested when I come in for the next appointment she'll have to tweak the prescription and we'll experiment how best to take it because, hell or high water, she will make sure I'm taking drugs! Again, I wanted to scream:

ARE YOU LISTENING TO ME?

Next on the list: thyroid. I am of the belief all my issues from foot/leg pain to kidney damage is related to my untreated thyroid issues. My previous doctor, the crazy one, was also treated to a lengthy description on my bad reaction to dessicated thyroid. Her response was, "OK, I"ll give you a prescription for dessicated thyroid." I should have stood up and screamed:

ARE YOU LISTENING TO ME?

I went into great deal with my new doctor about the last four thyroid prescriptions and how they all nearly killed me, especially the dessicated thyroid. Again, I repeated my descriptions of drug intolerance. Her response was, "OK, I'll give you a prescription for dessicated thyroid." Again, I should have stood up and screamed:

ARE YOU LISTENING TO ME?

Instead, I calmly explained AGAIN I had very bad reactions to dessicated thyroid and called attention to the fact every thyroid drug I've taken has had one thing in common, besides my horrible intolerance to them, they all have T3. Is it possible I am reacting badly to T3? Also, my T4 labs are low. Not my T3 labs. I also explained AGAIN Dr. Kharrazian's theory of hypopituitary caused by over medication. My side effects are exactly as he described and if I'm not detoxing the drug, I am being over medicated because my body is hoarding it.

She thought about that for a minute and prescribed just T4. Finally I felt heard. But it's like pulling teeth.

What is it that makes doctors not want to listen to me? It's such a waste of time to go into such detail and I'm ignored constantly. I have to explain details repeatedly, emphasize lab results, point to what I think is very obvious data I've collected throughout my health history with evidence from books and websites, yet they persist in following their own agenda. How many times must I repeat myself and correct their assumptions in order to get viable medical attention? And I'm paying THEM for this. I may need to start screaming:

ARE YOU LISTENING TO ME?

Still, I need a doctor. If I start screaming at them, no one will want to work with me. I legally can't prescribe my own drugs. I am convinced I am drug intolerant because I am chemically sensitive. I don't detox chemicals whether they be chemicals found in food, air, water, or drugs. I hoard the chemicals in my body creating overload consequently creating more misery. This was diagnosed by an environmental specialist years ago and recently supported by DNA testing that clearly suggests I have a detoxification mutation. Still, I need my thyroid issues treated, if only to see if they alleviate the foot/leg pain and rectify the kidney damage. Untreated thyroid can also cause heart failure. I don't want my organs to start failing. Something must be done and I seem to be the only one who can do it.

I realize I'm on my own. I'm treating myself. I'm hoping my theories are right. So my new plan is to try the T3, but not take it every day in order to avoid overload. We'll see...

My Current Doctor is a Drug Fiend, For Sure

  

My feet feel like they have no padding and I am walking on sharp rocks. At times the pain radiates all the way up to my back. It's a little scary. I'm nearly positive it's a Hashimoto's symptom or is somehow related to the fact my thyroid issues have gone untreated for the past ten years. Time to jump back into the experiment, but I know I don't want to go back to the nurse who knew nothing and looked at me like a deer caught in headlights.

I went searching yet again for a new doctor, one that might know something or at least one that might know a little more than I do and who is fragrance-free. This doctor has huge boldfaced notices on the front page of her website demanding everyone is fragrance-free. I had hope. Minimum requirement is they must know fragrances are poison.

Unfortunately, this one is crazy. She's moody and flies back and forth between between rage and stupor with occasional little girl regressions. The first appointment she began reading aloud my list of symptoms from my intake form and she kept exclaiming dramatically, "OOOOOHHH!" "OH MY!" "OH NO!" It was a bit unnerving and stressful until I realized she was not being serious nor sarcastic, just insane, then it was almost comical.

At the end of her reading she looked at me with wide eyes, excitement bursting from every pore, and pondered aloud, "What could this possibly be?" Looking at the second page she exclaims as if she's just discovered the cure for cancer, "Well, there it is! Hashimoto's!" She looks at me with surprise and delight like I just handed her the keys to her brand new, free Mazerati. I looked back at her with disbelief. If I ever get cancer I don't want her to be the one to tell me.

She talked a mile a minute but it was like self-babble. She didn't ask me questions but continued to rely on the intake form. Several times she made assumptions so I'd correct her, she'd glare at me, dramatically shuffle through the pages and asked, "Where is that? I don't see that information. It's not on here." If I didn't write it down, it didn't exist.

Heaven help the person who interrupts her or tries to ask a question. Every time I would try to talk she would stop, turn her head to glare at me, listen to my question, smile like she's forcing it, and say, "You are jumping ahead." I failed to realize she has a secret plan, a method of madness that involves step by step procedures. After she said that a second time I said, "Well, the appointment is only so long and I guess I'm afraid we'll run out of time before we get anywhere." She looked at me, smiled sweetly like she's being filmed, and said, "Then you can schedule and pay for another appointment." Whoa!

When she asked me if I take probiotics and I began to explain. She interrupted me and without looking up or at me screamed, "DO YOU TAKE PROBIOTICS, YES OR NO?" I think she was confusing me with a step-child.

The second appointment was for the lab results. I was NOT looking forward to this but I was hoping she'd have some answers. Any answers. Maybe I was thinking she might know something because she has a life-sized cardboard cutout of herself displayed in the office? Why would that give me hope? It certainly didn't give me courage. She seemed a little less high strung and almost catatonic on this visit, but she didn't disappoint with the animated dramatics.

When I told her for the fifth time I don't tolerate drugs well which was the purpose for one whole set of tests, she used her little girl voice to tell me I needed to have a test done to see if I have some kind of blockage in my throat that prevents me from swallowing effectively. Who said anything about swallowing? Does she not read the intake forms she requires we fill out with every appointment? She's not listening to me. She has no idea who I am or why I'm there, but she's still talking to me like I'm a kindergartener.

She wrote me a thyroid prescription anyway. She writes a new and different prescription at every appointment!

When I told her for the sixth time I don't tolerate drugs well and went into great detail about the side effects I get that could or could not be associated with the additives and fillers in the pill she said in an incredibly condescending tone, "Well, you are going to need to learn to read labels. I realize it will be really, really difficult with that tiny print so you'll need to wear your glasses and read the label very, very slowly. Maybe you can find someone to help you." Does she think I'm five years old or ninety years old? Who doesn't read labels?

When I asked her about the two thyroid antibody tests she ordered as I was wondering what the difference was between them, she looked at me with impatience, reached over and wrote on MY note paper in big, bold letters H-A-S-H-I-M-O-T-O-S and added, "It's a thyroid disease that was discovered by a Japanese physician." Excuse me?????? Did she not read on my intake form I've had Hashimoto's for the last fifteen years? Or maybe she thinks I don't know how to spell? I know these tests are for Hashimoto's. I tried to clarify I needed more information and she just smiled at me like her brain was not programmed for that question.

And her most memorable response was when I asked her about my issues with the previous thyroid drug and all its horrible side-effects, I wanted to know if it could have anything to do with an inability to convert T4 to T3. She looked at me with a really scary smile and said, "OH! That's a very complex theory." That was it.

So far I have spent about $300 in office visits and $400 in lab costs and she hasn't answered any of my questions nor addressed any of my symptoms. My feet still hurt and now I find out my kidneys are damaged and my butt is bleeding.

I think she's dipping into the drug sample drawer...

I admit when she makes these stupid comments I tend to mimic her body language: widen my eyes, nod at her, and raise my eyebrows with dramatic effect like I'm amazed and surprised. It's all I can do not to burst out laughing and a few times I have. I wonder if she knows I'm being sarcastic?

I need to keep searching for a new doctor. I'm not sure which is worse: stupid or crazy, but I'm so tired of the incompetence. These are people who are AMA board-approved to give health advice. It's scary. There should be a law against this....

Things I Learned This Week...

1.) Farting is good for you. It's caused by gut bacteria doing their jobs. I always thought it was a symptom of something not working right.

2.) MCS is thought to be an autoimmune response, or your body attacking the stored toxic chemicals and heavy metals in your fat and organs. Whoa! I KNEW IT! I've been saying this for years. Finally I found a doctor that agrees!

3.) Gargling makes your brain work better.

4.) Dogs are susceptible to Hashimoto's Thyroiditis because of the gluten in their chemically-saturated commercial dog food. I wonder if people know when their dog is showing symptoms or if they think he's just getting old and lazy? How sad. I can't imagine being a dog, feeling so miserable you can't move, and not being able to help yourself.

5.) Lipstick usage is connected to lupus.

6.) People with brain degeneration in the cerebellum area can feel sick from looking at patterns. They are also prone to motion sickness.

7.) Jesus was not a historical person. He's totally fiction. There is absolutely no historical documentation that he ever existed. This is mind boggling to me. Although I do believe Christianity is a outdated cult based on ignorant superstition, I always thought Jesus was a really cool rebellious dude who really lived. One theory is the Romans made him up to control the Jewish revolts of the time. Amazing what we are taught to believe as children and we accept without question as adults.

8.) Chelation should not be done by anyone with chemical sensitivities or autoimmune issues as it forces the heavy metals into your brain and may cause permanent damage. It will make you sicker. When you do get sicker, doctors will often tell you it's just your system detoxing. Nope. That's a lie. I KNEW IT! I've also been saying this for years having been an IV technician who used to administer chelation treatments in a former life. The stuff they pump into your veins smells putrid and unsafe. I'd never put it in my body no matter how many miracle cures are promised to me!

Drug Purge

I tried. I really did.

The first thing I noticed is eight hours after taking the 30 mg. thyroid pill, I'd get incredibly tired, crash, and feel the need to nap. I stopped crashing when I changed my diet so although low-level fatigue is what I was trying to address with these drugs, crashing was a newly returned symptom. My new health care provider agreed I should take a second 30 mg. pill in the afternoon. We assumed the drugs were wearing off. This seemed to work...for a short time. Then I started getting more tired in the afternoon, earlier in the afternoon each day, then waking early in the morning and beginning the day tired.  This was not an improvement.

I was also hungry all the time which wasn't new, but I started overeating.  Constant, compulsive overeating nearly to the point of vomiting. I had to pay close attention during a meal to know when to stop. I never felt real hunger and even after overeating, I'd still feel famished.

My legs and hips started hurting all the time. I read that hip pain is a hypothyroid symptom.

Then last week I started feeling borderline depressed. Just off. Like everything was not quite right. At first I thought this mild depression might have been residue from the heater chemicals offgassing. That would make sense, but it should have gone away once the heaters ceased to be a problem.

Prior to starting this Paleo with Hashimoto's Twist diet, I had severe inflammation, mostly at night. My skin would burn uncomfortably and my face was often burning red. It went away with the diet and since taking thyroid meds, it has returned. Inflammation is never good.

Unfortunately, all the muscle pain, muscle weakness and lack of muscle recovery never went away. The adrenaline rushes and hot flashes got worse. I had hoped a thyroid prescription would help with some of it. For a short time I did feel slightly more energetic and not as stress intolerant.

I worried about these new or returned symptoms and questioned whether things might get worse with a dosage increase.  I made an appointment with the formerly fired Nurse Lady.

Let me clarify. Yes, I had planned to fire Nurse Lady for failing at follow-through, but then I spoke to the pharmacist who said this was unusual behavior for her. So I thought I'd give her another chance. Maybe she was having a bad week? I know she wasn't having a bad week. She went to Hawaii. Can I blame her? Would I love to drop my life and go to Hawaii? Of course! But health care providers have a certain responsibility to their patients especially ones who's prescription needs refilling before it runs out. She should have done the research and settled her accounts before leaving. Instead she left me in a panic not knowing what to do. She never did get back to me about anything. Her failure makes that first appointment a waste of time and money.

Yeah, I should fire her, but then where do I find another fragrance-free health care provider? One who has Hashimoto's, acknowledges chemical sensitivity, recognizes my sensitivity to drugs, understands compounded pharmacies, and seems to have researched ideas relevant to my issues? Other than lack of follow-through, I really liked her. I wouldn't even know where to start looking for a new doctor. So she's not fired. I just won't rely on her to do what she says she will in the future. I really hate it we have to accept substandard health care for lack of any other choice.

My second appointment with her she said, "So, it's been over a year since you've been in?" Hmmm... I was in your office two months ago. She has no clue who I am nor what year it is. That did not inspire confidence. Did she leave her brain in Hawaii? I told her about my many new symptoms. The fatigue I have now is slightly worse, inflammation has returned, hips hurt, body hurts, and I am starving. During the course of the appointment I told her three times about the feelings of starvation and each time she stared at me with an occasional grimace. She had no clue. Her response was to give me dietary counseling. She knows I'm on the Kharrazian diet-that-saved-my-life and I know my diet is better than the diets of most Americans. It was frustrating to waste my time having someone tell me how to eat. I know my diet is what has improved my health, but she's not listening to me. I resent people who treat me like I'm a moron.

I did, however, lose two pounds which was odd since I'm eating like a horse, and my temperature is lower than the last visit (96.6). I asked her about how these meds work as I'm assuming they are killing my own thyroid's function causing more hypothyroidism which then demands a higher drug dosage to compensate. She disagreed but only on my choice of vocabulary. They suppress the thyroid. She told me people who take thyroid and want to quit can be weaned slowly off it and the thyroid will bounce back. I am skeptical. The thyroid gland doesn't just bounce back or no one would need any medication. I asked about a dosage increase since I read most people need to take three times more drug than I am, and she suggested the dose should be raised to 60mg. in the morning. The goal eventually was to take one pill strong enough to carry me through the day. I smell a drug addiction coming on. I just want to see an improvement. She ordered labs.

Breakfast...Yum.

So, the next day I took a double thyroid dose (60 mg.) and within an hour I was so incredibly hungry AFTER eating a multiple-course, multiple-helping breakfast, I wanted to eat my furniture. All day I was climbing the walls feeling like I was starving. I laid in bed that night and decided this isn't right. I checked online. There are others who have reacted to thyroid in the same way. Feelings of excruciating starvation not due to hunger. Their health care providers also had no answers for them.

The following day, I stopped the drugs. It was the first time in four months I was not hungry after eating a meal, did not overeat, and did not feel like I was starving.  Later that day, I felt no fatigue and it was the first time in four months I actually felt real hunger just before a meal. The next day I awoke to absolutely no depression and feeling really content and happy with everything.

Those damn drugs are poisoning me and messing with my brain.

Dessicated thyroid is real thyroid glandular from a pig, therefore, it has all the natural ratios of thyroid including T3 and T4. This natural balance is the reasoning behind taking it. Problem is it also comes with natural iodine, or iodide. Hmmm...I know people with Hashimoto's are supposed to stay away from iodine as it triggers immune attacks. Is this causing my reaction? Is this why I felt better at first and then slowly declined?

Kharrazian's book says taking thyroid medications unnecessarily will cause cells to develop a resistance to it creating pituitary hypofunction. The patient will feel fine at first, but then symptoms return. Hmmm....so the drug is killing off organs one by one? Kharrazian says your body's natural function will be permanently lost and dependency on medication will become lifelong. Great. That doesn't sound like anything will bounce back in fact quite the opposite. The whole thing is really frustrating and I get the impression most health-care providers fail to see the holistic side effects of any drug. Thyroid drugs are considered the easy answer, but everyone I know who takes them still suffers from fatigue which does not inspire confidence.

It's been a week and I actually feel much better without drugs than with them. I'm waiting for the thyroid lab results to see what has happened to my body while taking the drugs. I no longer think my low-level fatigue is related to just the thyroid, although I've been saying this for years. I was hoping this one piece of the puzzle would help a little. Not many people seem to know what to do with adrenal health problems. If I'm waking up every hour throughout the night with adrenaline rushes and hot flashes, it stands to reason I'd feel tired a lot. I read low cortisol incites the adrenaline rushes and this excessive cortisol will lower your blood sugar causing sugar cravings and digestive problems as well as muscle pain and weakness. I've known all along I should address the adrenal problems to support the thyroid and I've read if the adrenals aren't working properly, neither will any thyroid medication. Back to square one.

I'm currently trying to decide if I should go back to Nurse Lady or go to Gyno Doctor. The gynecologist has drug posters on the walls of her office and in the exam rooms. This indicates she will have little acceptance of chemical sensitivity, but she might know more about weird menopause symptoms than Nurse Lady. Also, her husband who shares the office with her is the only endocrinologist for miles. Still any treatments she will have will focus on chemical prescriptions and I already know I'm not very tolerant of drugs. What a game.

Health care sucks. It always feels like such a waste of money like I'm running in circles and getting nowhere. Just poorer.

Drug Intolerance...An Epiphany!

This thyroid medication has some interesting and not so interesting side effects. First, biting bugs all of a sudden love me. I haven't had any bug bites for years and now it's every day. A few months ago I came across an article that explained it's hormones that mosquitoes et al. are attracted to which is why adults get bitten more than children. I always thought they were attracted to sugar. Bugs biting made berry picking this year a bit uncomfortable.

Second, I've been getting less adrenaline rushes and hot flashes at night. For a while I was getting them once an hour all night long, now it's down to two or three. Hooray! I'm not quite sure if it's connected to the higher levels of thyroid, but I think so and this is a good thing. My new and wonderful doctor is thinking I should take a pill in the late afternoon and see if it helps even more.

Third, I have found every few days the nausea starts creeping up and the headaches begin and it lasts all day until 5pm. As I mentioned before, I start getting tired around 5pm and I've been assuming this is when the drug wears off so this makes sense. It stands to reason my liver is not liking the drugs. Most holistic thyroid doctors recommend you do a liver cleanse before starting the medication to help it work efficiently. So every few days I drink a glass of freshly juiced beet juice. Blah.

Blah Juice

One way to get the beet juice down is to mix it with other fresh juices. I mix mine with a little apple juice, but the best recipe is to mix beet juice, carrot juice and apple juice. There was a raw food restaurant in San Francisco that included this drink on their menu and called it "Blood". Aptly named as it looks just like blood.

I'm also trying to eat more cilantro, another liver detox food, and drink lemon juice in water, a kidney cleanser.

Of course, nausea makes me want to revert back to by childhood comfort food: cereal and milk. It reminds me of getting the flu at my grandparents' house and my grandmother telling me cereal is what one should eat for breakfast after having the flu as it is easier to digest than eggs. I associate cereal and milk with love. Comfort food. Every time I eat it I think of her and those are good memories. I caved to temptation and bought gluten-free corn flakes, milk, and bananas, all three are NOT on my diet, but do I care? It seems to help with the nausea, or maybe it just tastes heavenly. Or maybe there is something else at work here....

So...I'm laying in bed thinking I'll probably have to be on these drugs for the rest of my life if I want to be able to function with any amount of energy, but do I really want to drink that much beet juice in my life? First, fresh juices are high in sugar and not on my diet, and second, beet juice is blah. Not gross, just blah. What can I do? There must be a simple, or, not so simple solution.

There is...WATER.

 

WATER??? What an epiphany! The best way to clean out your body and detox your organs is water. Everyone knows that so why have I refused to acknowledge this? I know I don't drink enough water. It's all I can do to get four cups down in a day, and believe me, I've tried. I've justified my lack of water with not everyone needs eight glasses of water a day, a comment I made eons ago when I wrote a blog post on water. Or maybe they do? If you are eating sugary, salty, junky or unhealthy foods, I'm sure you need lots of water to wash it all out. I failed to realize I might not be eating unhealthy foods, but I'm certainly ingesting weird substances in the name of health. Maybe I need to increase my water intake and see what happens? Can it be that easy? And if it is that easy, why has no doctor I've seen in the past ten years made this simple connection when I tell them I'm drug intolerant? They all ask me how much water I drink. Even that last naturopathic quack asked this, but made no comment. (She didn't really talk at all so I guess I shouldn't be so surprised.) Cereal and milk craving? Is it the milk adding to my hydration which is why it makes me feel better? Hmmm...

I love a good experiment! For the last two weeks I've been gulping down eight to ten glasses of water a day which is like drowning to me. I pour them all out in the morning so I can keep track and set goals. The first four glasses have to be gone by noon and it all needs to be done by 5pm. The first few days were not fun. The water retention was uncomfortable and I felt bloated and sluggish. The first few nights I was up and in the bathroom nearly every hour! What a pain! Literally! Driving anywhere for more than a half an hour and my bladder would feel like it was about to burst. But I persevered. Two weeks later and this improved a just a little so I have hope perhaps my body will continue to adjust. BUT the nausea and headaches went away immediately! Then by the second week, any time I did something strenuous or even got warm, sweat would drip from every pore. Profusely. Even my knees were sweating! This is a strange phenomenon as I've never perspired in my life! The nausea creeps in ever so slightly if I drink under eight glasses a day or with an empty stomach and I now start to crave water if I don't drink it. This is somewhat of a breakthrough for me.

It kind of makes me wonder if my life-long dehydration contributed to my chemical sensitivity? The premise, or so I've been told, is I don't detox fast enough or at all. If I've been constantly dehydrated, how could anything possibly be flushing out so that would make perfect sense. Why has no doctor ever made this kind of connection? That, however, is no excuse because I've always known humans are supposed to drink eight glasses of water a day. I am the person to blame. I am stubborn.

Excellent epiphany!

How many glasses of water do you drink?

DAY SEVEN!!!

As I've mentioned before, I have about a 2-4 day maximum load threshold with drugs, herbs or any supplements. Multi-vitamin pills make me ill on day two. Herbs usually day four. Some supplements make me mental while others make my body hurt.

I began my thyroid hormone replacement therapy with much hope and some trepidation. The DHEA was a short-lived experience so I wasn't even sure if my adrenals got a jump-start. Will this type of thyroid fail like all the others? When I say "fail" I don't mean will they not do what they should, I mean can I even tolerate them long enough to allow them to work? I've done everything possible to select the most natural, tolerable form possible: low-dose USP Thyroid from a pig, gelatin capsules, and rice flour filler. On the Dr. Kharazzian diet I'm not supposed to eat pork or rice. I wasn't associating these pills with food. Next time I'll opt for bovine (cow) thyroid and coconut flour filler. Sounds like the latest gourmet recipe...Yatna's Coconut Beef Goulash.

I'm also taking them first thing in the morning on an empty stomach as directed, but with twice as much water as recommended. I'm doing everything possible to be successful. I'm tired of being tired all the time.

Day one came and went, although I did feel slightly more energetic. Was it just wishful thinking? I think most drug effects are mental, or the placebo effect. We are so desperate for something to work, we imagine it. I need this to work.

On day two, three hours after taking the pill I felt a tinge of nausea...so I drank more water and ate more food and it went away. Some days my neck slightly hurts which is a common chemical exposure reaction for me, and other days I've experienced very slight itching of the back, another common reaction to something foreign. Most days I'm feeling more energetic to the point where I want something to do, but this new motivation is so strange I don't know what to do with myself. My muscles still feel weak and sore with late afternoon moments of slight fatigue, but it could be a physical reaction to new energy levels or when the pills are wearing off.

I know medications take time and I don't expect this very low dosage to create much of a difference. I even read minor nausea might go away after a week or two of adjustment as long as the nausea is tolerable. Adjustment is the key to making this work as I read not to get too impatient and raise the dosage to quickly. Slowly ease into it and give the body a chance to assimilate the drug and figure out what to do with it.

It's now day seven, three days past day four, and these pills are tolerable!!! For me this is a MEDICAL MIRACLE!!!

HOORAY!
(So far...)

 

Drugs

It's that time of the year where I get the courage to go to a new doctor and try something new for the fatigue, muscle weakness, muscle pain, and all-encompassing feeling of blah. The diet has helped a lot and I think that is the reason I'm rarely totally exhausted now, but it's not quite enough. I want to be able to function better and not feel so...blah...all the time.


I've been reading a lot on thyroid hormone prescriptions lately, but I'm definitely not an expert on this information. Here are the basics: There are two categories: natural and synthetic. The natural sources are dessicated thyroid or thyroid extract and the source is from porcine or bovine thyroid. Yep, real thyroid from pigs or cows. The brand names are Armour, Naturethroid, and Westhroid. Because they are from natural sources, they have natural levels of both T3 and T4 and seemed to be well-tolerated by many.


The other category is synthetic or derived from laboratory-produced chemicals. Levothyroxine is the most commonly used and well-tolerated by most. Brand names include Synthroid, Levoxyl, Liothyronine, and Levothroid. These are often just T3 as it is expected the patient will convert the T3 to T4, but based on my recent readings not everyone is capable of this conversion and some are even sensitive to T3 which can cause problems.


In the past I've tried Armour dessicated thyroid and various forms of levothryoxine. I've not tolerated any thyroid replacement hormone well. Armour made me nauseous for six straight weeks, sustained -released levothyroxine kept me away all night and made me nauseous all day long, and non-sustained-released levothyroxine made me so ill and in pain I almost took myself to the hospital. Through all the discomfort I continued hoping it would improve my energy level and fatigue, but nothing did. These prescriptions are very expensive so each failure is incredibly frustrating and financial discouraging.


According to Dr. Datis Kharazzian who saved my life with his dietary protocol and book Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal, intolerance is often caused by the fillers used in these pills. I attempted to correct this by using compounded pharmaceuticals so I could control what goes into each pill. Still, adding something like a time-released feature takes an extra chemical and the pills must have some kind of filler. This came as a surprise to me. You can't just put the drug in the capsule without a filler? No. I'm learning.

Unfortunately I wasn't told this until after I received pills filled with Avicel, a filler that made me feel like I was painfully digesting shards of glass. I know it was the filler because I replace the sustained-released pill with this one and I assumed they would have the same ingredients minus the time-releasing chemical. Nope, someone thought they needed to add an unknown filler without consulting me first. When I called the pharmacy and asked why I was so sick, I found out I should have had a choice of fillers. You can't imagine how irritated I was to throw a $100 bottle of pills away. So...what is Avicel? Wood pulp. It sounds fairly harmless. Another pharmacist told me problems with Avicel are rare unless I have an allergy to pine. Well, there you have it. My whole family is allergic to pine so it stands to reason I would be as well. Also, I always hear about how rare side effects are and I can state with absolute certainty if there is a "rare" side effect of any kind, I will have it. I'm just that sensitive.

Recently I read not only should you watch for fillers, but prior to thyroid therapy, one needs to make sure their adrenals are working properly to allow the thyroid medication to be effective. I tried licorice root, but it didn't seem to make a difference. Astragalus, another herb, is also used for this but according to Dr. Kharazzian, if you are TH1 dominant, this will worsen an autoimmune condition. Based on information, I thought I was TH2 dominate which is common with chemically sensitive people. Astragalus made me crash with exhaustion.

DHEA is another method to support adrenal function. You can buy DHEA supplements over the counter, but they are often high dosages and filled with additives and fillers. My new doctor said she avoids prescribing DHEA because it stores to toxic levels very quickly. Dr. Kharazzian suggests sublingual DHEA as it is less likely to store as quickly and is more effective. He suggests not to ever take it for longer than four weeks. It's only to jump-start the adrenals and once you feel a difference, stop taking it or your adrenals will shut down and stop working on their own. I found this to be interesting since so many of my friends take it continuously as an adrenal booster. The sources for DHEA are synthetic (chemical), wild yam or soy. My new pharmacist says the company uses yam. Perfect. I don't want chemicals or soy.

In addition, it is advised to do a liver cleanse before starting these drugs and this will help avoid any side effects and assist in the effectiveness of the drug. There are many herbal remedies that will detox your liver, but I like avoiding drugs when possible especially since I react to so many. Instead I started drinking beet juice and eating beets.

The reluctant patient

My new naturopath doesn't seem to be very knowledgeable and as a friend recently said, that is the concern with naturopaths or any doctor: will they know more about my condition than I already do? Not usually. But I need them to be receptive to my requests and at least respectful to my knowledge. Even this is difficult as most doctors want to be put on a pedestal and worshipped for their expensive advice. They often treat patients as stupid subordinates who are expected to nod politely, not talk too much, and be very compliant. Too much power play which for me ends up to be a waste of money and a personality conflict. This new doctor, however, was receptive. I told her exactly what I wanted, but left it open to her advice. In the end her "plan" for me was to eat vegetables at every meal and at least one fruit a day. Really? Was she not listening to me when I went into great detail about my diet? I pretty much kindly, but assertively bullied her into some prescriptions. She also suggested astragalus tea and I decided to try it since it only cost $1.50, but it didn't go well. I know I don't do well with herbs. I should have known better.

She was hesitant about DHEA, but I think my own concerns about its toxicity and proper usage must have given her some confidence. She agreed to prescribe a very low dosage (1 mg), for a short time (30 days), sublingual form, just to jump-start the adrenals. I interrogated the pharmacist so much that when it came time to make the sublingual tablets she waited to ask me about which kind of filler to use. (THANK YOU!) My choice was gelatin (horse hooves) or ethyl alcohol. I started to laugh when she said ethyl alcohol. Really? After all the questions I asked about chemicals, fillers and toxicity why would anyone think I would choose ethyl alcohol?  I'm so glad she gave me a choice. I'm not excited about gelatin, but it is gluten-free and might even strengthen my fingernails. She also said they add a flavor. Hmmm...nope. I don't want a flavor. She said she didn't know if DHEA would be bitter, but I decided to chance it. The tablets are weird:

Little squares of colorless, wiggly JELLO. Put one under your tongue on an empty stomach and no swallowing until it dissolves. I was surprised they tasted sweet so I wonder if someone added something to it or if the gelatin comes sweetened. This is the issue. They can add anything without your knowledge. I don't even want to think about what is in the over the counter form. Thirty sublingual tablets were $50.

I also received a prescription for dessicated (pig) thyroid (Thyroid USP) which is much like the old Armour Thyroid that was re-formulated a few years back. My previous experience with natural thyroid was the stuff loaded with unknown fillers which may have caused the nausea. I asked about the fillers in advance and they gave me a list of types (this is when I found out about Avicel being pine-based) and then off hand it was mentioned they could use rice flour. Rice flour!? Although the thought of raw flour stuck to my stomach like glue wasn't appealing, I know I can tolerate rice flour. I'd have to buy a bag of rice flour myself and bring it in. I'm not sure why they don't have their own supply. I forgot to ask if I could use coconut flour as rice isn't on my diet, and later I was told it would depend on the texture so I'll try that next.


I think the capsules are gelatin and I wasn't given a choice. This is another question I failed to ask and I've found only with experience does one know WHICH questions to ask. I'm learning. Previous pharmacies have used tiny capsules that are about the third of the size of normal ones, but I received normal size which seems to be an excessive amount of rice flour. There is often a vegetarian or vegetable capsule, but again, I wasn't offered a choice. I requested an extremely low dosage of thyroid (30 mg.) to avoid shocking my system and I'll work up to find a suitable level. The doctor called it into the pharmacy, unfortunately, as I really wanted to double check what they were doing before they did it. I didn't really want to pay for a 90 day supply in case after my normal four days they made me ill, but they were already formulated by the time I went in. Ninety capsules cost $95. OUCH. But this is how the compounding pharmacy works. If I only received, for instance, 14 capsules they would have cost me around $70 due to the effort it takes to create the pills individually by hand.

So...

First step: liver cleanse with beet juice
Second step: jump-start my adrenals with DHEA
Third step: thyroid replacement therapy

I am ready for another pharmaceutical adventure, or, hmmm, experiment. At this point I feel like I've done everything in my power to be successful. Wish me luck!