Hyperthyroidism

goiters

After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!

A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.

I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.

A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.

When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.” It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.” I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.

My Career in Healthcare.

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My view this morning… and all too often.

Recently, I was imploring my husband to find opportunities for couple-time in his schedule, get me out of the house so we could do “fun” things, spend time as a family… I wanted to drive around and look at the extravagant Christmas house lights over the holidays or see the Christmas ships; I wanted to visit Snoqualmie Falls, especially while it was raining so hard and the water would be high and dramatic; I wanted to drive north to look at flocks of snow geese; Seattle Symphony–anything! These things never happen and my husband said, “But every week your energy is maxed out with doctor appointments.” This is true, but this is calculated behaviour so I don’t go stir-crazy or get depressed. I can manage about 3 things a week and I’ve been scheduling about that many appointments every week for years. Hydrotherapy, strain-counterstrain, myofacial release, pelvic floor PT, acupunture, mental therapy, dietician, as well as specialist appointments, follow-up doctor visits, blood draws and testing. When I don’t have something scheduled, my attitude goes down very quickly. I think I might quite literally go insane if I shuffle around the house in baggy pjs for too long, alone, talking to the dogs, cooking meals for one, keeping myself occupied with paperwork, illness research, watching tv– especially in the winter when I can’t at least shuffle into the garden.

I tried to take a week off once and I caved by Thursday and made a massage appointment for the next day. I was crawling the walls, feeling ineffectual, lonely, angry. I wonder how anyone without a spouse or support system survives, or patients who are completely housebound or bedbound or neglected in institutions (not to mention much more horrific situations of war, solitary confinement, POWs…). It’s the isolation more than the confined physical space, I guess. My appointments give me “somewhere to hang my hat” as my grandfather used to say — a reason to get dressed, a place to go and have a conversation. My “rehab specialist” asked me if therapy was helping and I said, “I get dressed and I get to talk to someone.” He’s obviously done a lot more than that for me (for example, helped me find the best doctors and get disability), but my point was clear. Shared experiences are much more important than I realised. Like the outcast monkey that would just hang out on the edges of the enemy monkey territory even though he could be torn to shreds at any moment because the drive for company and community is that strong (I saw it on NatGeo, it made me weep).

My physical therapist and I talk about books, movies, music, tv shows, politics and I get to lie supine and motionless while he gently fixes my pain. How could I give that up? But I would–to do things with my husband. So, that’s what I told him–my husband–and he seemed confused, asked: “You can just stop those appointments? You don’t need them?” It never occurred to me that he didn’t know I scheduled these things to save my sanity, to save me from offing myself. Isn’t that obvious? Of course I don’t need to go to them! I wouldn’t cancel my immunoglobulin infusions, but all other commitments would be trumped by the importance of quality time with people I love. Husband and dogs first, friends next (actually, friend, since only one visits. Love you, Z!), healthcare visits last. That’s how I schedule my weeks. If I think there might be the weather to go to the cemetery with my boys on a day that my husband can do it, I will cancel everything else. I’ve exhausted the search for The Doctor Who Will Fix Me. I’m happy with my GP, endo and body people. I’ve seen the best neurologists. I don’t really think I would benefit from an immunologist, allergist or rheumotolgist. Maybe one day in the future I will see an ME/CFS specialist, but, for now, I’m going to focus on other things. So, my goal for this year is to encourage my husband to work a little less and redirect some of our energy into more joyous experiences. I can’t be very spontaneous, but I can schedule an “appointment” to drive out of town or an hour in a coffee shop or even play a game at home.

I Found My Worst Nightmare

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On this day four years ago, Facebook reminds me, we were shopping for a recliner. I’d been sick one month. I’d seen my endocrinologist, assuming that the low-grade fevers, violent chills and drenching, shaking, sleep-murdering night sweats were something to do with my post-ablative hypothyroidism. I didn’t go to my GP for another few weeks, only after every Google search of my symptoms came up with malaria and I started to wonder, what if?

I’ll never forget the feeling I had that day. It was a Saturday and I’d gotten up early and gone to a “Pure Barre” exercise class — my knee-jerk response to not feeling well was to exercise more (ignorant and hopeful during that first year, I booked three yoga and exercises courses and was never able to go once). I remember leaving that class and calling my husband in tears. My body responded in such a violent way, I could barely walk. I sat in my car for half an hour before I could push in the clutch.

I was in a daze when we were looking for a recliner later on the same day, shuffling around the stores, feeling weak and fearful of whatever the hell was happening to me. I remember acting like a caustic recluse when the salespeople wanted to engage me in their spiels, giving my husband that look that said “get this person away from me.” I joked about my outfit in this photo, but in reality I couldn’t shower or change before we went shopping — it was too much energy — and that was such an alien thing for me that I had an overwhelming feeling of doom. In truth, as much as I hoped it was my thyroid, I knew as soon as this illness started that it was something bigger.

Today I feel worse than I did that day. There was no pain then, no sore throat, no daily headaches, no brain problems, no muscle wasting. I still had a job and friends, I still drove, and ran around in the dog park and laughed every day. Sometimes I can’t believe it. Every day for over four years? Isn’t it meant to plateau? Am I not meant to acclimate and get used to this? Find a quality life somehow? I don’t hope to feel good again… not even average… I just hope to eventually get to a place where the good outweighs the bad and makes me feel like it’s worth continuing this fight.

P.S. To all my friends who have been doing this longer than I have, you inspire me to continue the fight. ❤

The Reaction Chronicles

I’ve been adding a supplement or trying a drug or testing a food every few days for a while, holding off before and during my period and if I am reactionary. I have recently had some of the most violent side effects to some of the most innocuous substances and I still find it incomprehensible. In my old life — that old Elizabeth who started 10 supplements at full dose on the same day — I never would have believed that such a small amount of something “harmless” could cause such an extreme reaction. Most notably, ElectroMix electrolytes paradoxically causing extreme blood pressure crashes, D-ribose causing extreme blood sugar crashes and Dr. Yasko’s All In One vitamin causing such terrible bone and muscle pain and cramping from the waste down that I didn’t sleep for three days and was considering going to the hospital and begging for an epidural.

I wanted to chronicle these trials so I remember. Here are my notes from the last four months. No note means no discernible reaction.

  • 4/26/14: Started CoQ10 100mg
  • 4/23/14: Started Thorn Bio-gest
  • 4/20/14: Started Now Foods Yucca
  • 4/15/14: Started Prednisone (bad sleep, swollen hands and feet, grumpy, facial hair, very bad tachycarrdia)
  • 4/13/14: Started Thorne Riboflavin 5 phosphate
  • 4/12/14: Started 2 Fish oil capsules
  • 4/10/14: Started Calm magnesium + calcium
  • 4/3/14: Changed Zyrtec brand
  • 4/1/14: Started Dr. Yasko’s All In One vitamin (unimaginable pain from waste down in bones and muscles; spine muscles jumping; worst reaction ever)
  • 3/26/14: Started D-ribose (terrible BS crashes)
  • 3/25/14: Started Desonide cream and tried Valium (horrific headache, stuffy nose, SOB)
  • 3/24/14: Started Dr. Yasko’s digestive enzymes
  • 3/22/14: Tried Baclofen (bit of a headache)
  • 3/21/14: Started Molybdenum and Vivite face wash
  • 3/19/14: Started Finacea, Cereve face wash and clindamycin lotion.
  • 3/11/14: Tried Electromix (terrible BP crashes)
  • 3/8/14: Tried L-glutamine (sickest day in months)
  • 3/6/14: Started Jarrow Formulas Acetyl-l-carnitine
  • 3/5/14: Started Zyrtec
  • 2/27/14: Tried egg (very bad next day)
  • 2/26/14: Tried fish
  • 2/24/14: Tried avocado
  • 2/21/14: Started Zantac (terrible stomach pain and nausea)
  • 2/15/14: Tried gelatin again (helped sleep)
  • 2/14/14: Tried Valium (headache, stuffy nose)
  • 2/12/14: Tried Cannabis pill again
  • 2/5/14: Tried Thorn Medibulk
  • 2/4/14: Tried Benadryl for sleep and gelatin (hungover next day)
  • 2/2/14: Tried Tizanidine
  • 2/1/14: Tried egg, avocado and cannabis oil (very bad next day)
  • 1/26/14: Tried egg (itchy throat spot, very bad next day)
  • 1/20/14: Tried citrus
  • 1/5/14: Tried soy (bad headache)
  • 1/31/13: Tried Ativan (dopey, headache, bad the next day)
  • 12/24/13: Tried Trazodone again
  • 12/19/13: Tried Trazodone again
  • 12/16/13: Tried Trazodone
  • 12/12/13: Started PS
  • 12/6/13: Tried corn (next day bad bowel and headache)
  • 12/3/13: Started probiotics

Other reactions of notable mention:

DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?

Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!

So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.

Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).

raspberry pop tarts

raspberry pop tarts

Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.

To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.

The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.

I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.

If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.

To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…

Rag and Bone Blog Anniversary

I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.

Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.

This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.

Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).

I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.

I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.

I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.

Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

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