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.

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2016 Beach memories: Pictures worth 20,000 words.

Two years ago, I spent a few arduous days in L.A. with my mother and husband so I could have an appointment with Dr. Chia. Last year, we spent a few days on the Washington coast while I was very sick. We picked the closest coastal town to our house, so it was the shortest drive and my husband did all the work — I just had to get myself in and out of the car. I did it for the dogs, to see their joy on the beach, to try to make up for two and a half years of no adventures and lessened activity… but I was not in good shape.

This year, though… This year we took TWO TRIPS TO THE COAST. Again, all I had to do was pack (no easy feat — it takes me days) and get myself in the car. My angel husband, with good spirits, loads everything in and out and in and out of the car, including my mobility scooter, all my food, bedding, towels etc. I even brought my air purifier. I love being so low-maintenance.

Last June, was our longest trip since I got sick. We stayed in the same place in the same coastal town as we had in 2015, but I was feeling better than I had in years so, on the day we were meant to leave to go back to Seattle, we found a different rental and extended our visit for an extra two days. This new house was right on the beach and had a balcony. I had no idea the difference it would make to my experience. The first rental was further inland and had a fenced-in yard and trees enclosing the garden. It never occurred to me that a view might be nice — might even be soul-enlivening — I was just happy to see four different walls. But the simple act of gazing at an expanse of nature, even from inside a house, is everything when you’ve been housebound for a prolonged period. That first night, when I saw the vast black sky punctured with millions of bright stars, I started weeping. When was the last time I really saw the stars? I will never forget that moment. And the next day, sitting on the balcony, watching the waves… It didn’t even matter if I was feeling too ill to get to the beach. The funny thing was, I experienced none of that Oh-I-feel-so-much-better-near-the-ocean “locations effect” that so many people with ME report. If anything, I was taken down a notch by the wind, the marine smell, bonfire smoke at night, trying to manage my temperature fluctuations etc. Plus, there were, of course, a few difficulties for my sensitive system (a house on stilts that shook so violently, I couldn’t sleep, overwhelming bleach smell in the bathroom, strongly chlorinated tap water, too many stairs), but it was definitely worth it.

Over four months ago, I wrote a Love letter to my sons as a preamble to the big post I intended to write about the coast trip and then, of course, never got around to writing it. I’m struggling at the moment (this post has taken me a week to put together), so I’m going to let the photos do the talking.

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Half the house packed in the car, ready to go.

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ROAD TRIP!

This was the first night we arrived. A beautiful crescent moon welcomed us to the coast.

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Some days were overcast…

… with dramatic evenings.

Some days were glorious…

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…with breathtaking sunsets (taken from the balcony).

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The beach is exhausting. 😀

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The couple next door got married on the dune in front of our house. I wound up talking to them the day we left because I wanted to send them the photos I took and, in a bizarre coincidence, it turned out the bride had been suffering with a similar illness as mine, had tried many of the same treatments, knew all the same doctors. We both got tears in our eyes. It was a surprisingly beautiful thing to talk to someone so freely *in person, not on the internet*, without having to explain anything.

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The flag on the left is where they were wed.

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We had no plans to go again this year, but our best friends wound up renting the house next door to the one we had in June, so, at the beginning of this month and at the very last minute, we decided to join them. I’ve gotten worse the past few months, so I knew I wouldn’t be able to participate as much as I would like to (the first night they all played cards and had drinks, while I was in the other house, resting. The second night they had a bonfire on the beach, while I was inside, resting), but there were wonderful moments of normalcy: Z. chatting with me over morning tea, without the time-pressure of a planned visit; my dogs’ excitement when they saw Aunt Z. and Uncle J. on the beach — missed members of our extended pack; watching their family fly kites on the beach; colouring with sweet Anna while she talked my ear off more than she ever has before; eating dinner at a table with a group of friends, with conversation, laughing and music playing in the background (<~ this most of all: just hanging out amid all the normal sounds, feeling part of a group); and the social time my husband got, just hanging with friends he hasn’t seen properly in years.

The only downside was my dogs are showing their age much more now than they were even four months earlier. I couldn’t use my scooter as much as last time because they simply didn’t have the stamina to walk distances and were both limping after our first short excursion. The last — and warmest — day, Bowie didn’t even get out of the car for more than a minute. He was pooped. And Riley just sat next to me like a sentry, wondering why I was lying on the sand. I fear it really might have been the last hurrah on the beach, which makes me even happier that I pushed myself to go and create new memories.

The boys were thrilled to be back!

Our best friends frolicking. 🙂

Bowie and sweet Anna flying a kite.

One day was dark and brooding and that night it stormed with 50 mph winds.

Another day was sunny and clear.

 

Small steps with payback… But new memories and happy dogs are everything.

International Awareness Day for Myalgic Encephalomyelitis

Posted on Facebook:

Today is International Awareness Day for Myalgic Encephalomyelitis (ME/CFS) and this is my small effort to educate and contribute to a larger understanding of this disease. Like I said last year, there’s not much point in continuously sharing information within the patient community, since we know the hardships all too well, so I’m asking my healthy friends to take a minute to learn a bit more about this debilitating neuroimmune condition. Only with awareness can the tides change.

Like many illnesses, there is a large range of disability. Some people can hold jobs, while the severe end of the spectrum is horrific incapacitation*. Unlike other illnesses, however, there is virtually no budget for research (male pattern baldness has 6 times the funds devoted to discovering treatments, according to Dr. Klimas).

274c75c7-e926-442c-947c-68e020e95d2b-1-1In my own case, I have made a lot of improvement since starting immunoglobulin infusions 7 months ago. Facebook reminds me that this time last year I was bedbound, in pain, with flu-like symptoms, which still happens, but with much less frequency. Things are more stable, payback isn’t as vicious. I still use a mobility scooter in the dog park, but I have more than doubled my daily steps and I’m able to do more. Today I went to the bank. 🙂

More information:

Jen Brea on TED Blog
Occupy CFS: Very Very Aware
Learning to Live With ME/CFS: Today is International ME/CFS Awareness Day

How you can help:

On May 26th, MEAction has organised the #MillionsMissing project, which will take place in multiple cities across the world, with a coordinated campaign of demonstrations and demands. Learn how you can support it here.

Sign this petition to increase funding to find a cure.

There is very little funding for research for treatments, so, if you have the inclination and means, donations are sorely needed:

U.S: Open Medicine Foundation
U.K: Invest in ME

In the U.S:
Tell Congress to Increase Funding for ME Research.
Send your congressional rep Llewellyn King’s article on The Hill’s “Congress Blog”.
Buy a “Congressional pack“.

*More info on severe M.E.:
Severe M.E. and Invisible Illness Video
JK Rowbory: All the things that you never wanted to know about my life with an acute chronic illness

Migraine Help From Headache Neurologist

Last year I was taking an Uber (taxi service) to an appointment and, thankfully, the car wasn’t smelly with cleaning products or dangling air fresheners, but the driver had the radio on and I’ve found background noise difficult since I got sick. I asked him if he would mind turning it down because I had a migraine, which wasn’t exactly true in that moment, but I do get migraines and that’s usually a good excuse for the taxi conversation about scents and noise and why you have your sunglasses on and the window down when it’s gloomy and raining. Turns out, this man had to leave his 9 to 5 job because of crippling migraines and was really suffering until he saw a local neurologist. He said he was having a hard time with migraine meds and she put him on this mitochondrial supplement and a natural regimen that helped tremendously (my ears perked up at a random stranger talking about mitochondrial deficits causing migraines, so I bought the supplement right away, but haven’t gotten around to taking it in the last eight months). Of course, I wrote the specialist’s info down and, when I saw my therapist, I mentioned this doctor to him (my therapist sees lots of people with complex illnesses like mine and has a network of good doctors that he recommends based on feedback from patients). “Oh yes, I’ve heard great things about Dr. Murinova,” said my therapist, so that sealed the deal, I wanted to see her. “But she stopped taking new patients.” Somehow, though, I managed to slip in and get an appointment and, it was true, when I tried to reschedule it, she had nothing else open for the rest of the year, so I felt fortunate (and kept the appointment).

There are some not-so-glowing online reviews of Dr. M, but most seem to center on her brusque demeanor. She’s Eastern European and has that sort of no nonsense approach, which doesn’t bother me at all. I quite like it, in fact. At one point, I told her it would be really difficult to wake up early enough to see the morning sun and she looked at me hard and said, “Do you want to get better or not?” Gulp. Yes, I want to get better! She said there was no point in eating good food and enough protein if you aren’t getting up in the morning because the blue light signals the pineal gland to convert protein to serotonin and melatonin (see her handout below). Her bluntness was effective. I haven’t managed to change my sleep schedule, but I certainly started taking it more seriously.
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imageShe diagnosed me with: “Chronic intractable migraine, with status migrainosus and occipital neuralgia.” She also gave me a physical exam and then diagnosed me with fibromyalgia before we’d even talked about my primary illness. Believe it or not, that was the first proper hands-on work-up I’ve had for fibromyalgia since being sick — even during those early years of excruciating body pain. She said migraines are tied to mitochondrial insufficiency, IBS, fibromyalgia etc. and that low available energy kicks off the trigeminal nerve alarm which causes pain. My genetic predisposition (my father has a long history of cluster headaches) coupled with central sensitization and not enough energy to power the thalamus properly = migraines. I thought she was very thorough and obviously extremely knowledgeable. I especially liked that she had a natural protocol and a medication protocol depending on patients’ needs.

Below is the plan she gave me. I can’t say it is definitely her advice that has helped (I started immunoglobulin infusions right after seeing Dr. M), but my headaches have been much better in the last six months.

  • Change my posture (shoulders back and scapula close together). She said it will feel unnatural, but bring the shoulder blades together as much as possible. I’ve been doing this.
  • Yoga might help neck issues. Haven’t tried this yet.
  • Aerobic exercise and build muscle to feed mitochondria. My goal.
  • Good nutrition and enough protein. Try ish.
  • Deep breathing, relaxation and other parasympathetic nervous system activities. I do these daily.
  • Sleep better, but wake yourself up early for outside light from 7-9am to build serotonin (that time is very important for short wave light that feeds your brain; you need it to cross the retinas, but not through a window. She felt this was non-negotiable). I haven’t managed this, of course.
  • No more Tylenol (more than one a week will perpetuate headaches). Now I only take it once a week for my immunoglobulin infusions and on the rare occasion of a bad headache.
  • Drink up to 3 cups a day of feverfew tea (she thought this was most important. She has weaned patients off migraine meds with this tea). I drink it daily.
  • Consider SAMe (200mg/day), yarrow formula, magnesium, coq10, riboflavin (I already take the last three), other B vitamins (B12 shots are a possibility for a boost).
  • A device called Cefaly, which works on the trigeminal nerve to break the feedback loop and is proven to greatly reduce migraines. $300 out of Costco in Canada.
  • Instead of Tylenol, consider low-dose Lyrica as bridge drug, not a permanent therapy.
  • Book: Chronic Pain and Fibromyalgia by Stephen Stahl.
  • The study she gave me is great reading. It also suggested acupuncture, oxygen, capsaicin and butterbur, but she didn’t specifically mention those.
  • She also gave me the following handout, which you can hopefully enlarge to read:
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Treatment Update

Today (actually last Thursday, it took me a while to write this), I had my follow-up appointment with Dr. Kim to go over the gaggle of blood tests I had done in March. There is a lot that I am adding into my regimen, so I wanted to document it all asap before I forget everything she said.

We’re going to try hyperbaric oxygen therapy! I said it as a joke as we walked past the room with the claustrophobia chamber: “When do I get to dive?” And she thought it was actually a good idea. So, I’m going to start with a very short time (10-15 minutes) and work up to 60 minutes “at depth”, with supplemental oxygen, once a week. This is out-of-pocket, of course, and pricey at $150-$175 per 60-minute session, so I’ll try a few and see how I do.

I am starting a slow treatment for candida with Nystatin, Diflucan and Thorne SF722. Here’s the protocol:
*Nystatin on Mondays and 2 capsules a day of Thorne SF722 Tuesday through Sunday for 3 weeks.
*Then the same thing with Diflucan on Mondays for 3 weeks.
*Then Nysatin Mondays, Diflucan Thursdays and 2 SF722s on the other days for 2 months.
She didn’t mention diet and I didn’t bring it up. Yippee!

I’m increasing oral progesterone to 100mg/day (I’m at 25mg now), staying at 25mg of oral pregnenolone (uh oh, I just realised while adding this link that I’ve been swallowing my pregnenolone whole, not realising it’s sublingual… grreeaaat 😝) and changing from topical DHEA to 25mg oral.

My sex hormone binding globulin (SHBG) is high, which she said functionally lowers hormone levels. I’m going to start nettle root capsules (work up to 300mg twice a day) to bring SHBG down (not to be confused with nettle leaf, which I drink in tea every day).

I’m not anemic, but my iron is low. She wants me to add Floridix, but after reviewing the ingredients, I may just do a generic ferrous gluconate supplement for 6 months.

For sleep:
*5HTP, 75-150 mg at night (this was recommended by a friend–thank you, M–and Dr. Kim thought it was worth a shot). She says it may even interact with the 5HT4 receptors in my GI tract and help motility. 30-50 mg P5P (active vitamin B6) should be taken with 5HTP.
*Dr. Yasko recommended I get my lithium tested (she answered a quick question on Facebook, I’m not working with her) and Dr. Kim thought I could try supplementing a 20-40 mg per day without a test and see if it helps.
*Belsomra, a prescription sleep medication given to me by my sleep doctor, is still sitting on my shelf a year later and I intend to take a small nibble one of these days. It doesn’t interact with 5HTP, so I can try all the things.

For constipation, I am going to try MotilPro (work up to 3 capsules morning and noon) and a bit of iodine in the form of potassium iodide (5-20 mg 4 times per week).

She said my vitamin D at 40.4 ng/mL is actually fine and I should continue taking 4,000iu/day (I take Thorne liquid D3+K2). She bases this on my calcitriol (vitamin D 1,25) number, which is good at 48.2pg/mL, right in the middle of the range.

She’s not worried about my high cholesterol or LDL at all, so I’m going to shake off my concern about that and trust her.

She said not to worry about an Igenex lyme test or my positive bartonella test for now. She is going to treat my high mycoplasma pneumoniae eventually and she said that treatment is similar to what she’d do for tick-borne infections. I have to say, I kind of like that a reputable LLND isn’t jumping straight into Lyme testing and treatment. She’s definitely not a one-trick pony.

I’ll start antimicrobials for M. pneumoniae, CMV, HHV6 and EBV later this year when my body is stronger. She thinks it will most likely take at least 2 years to get those blood tests into the normal ranges (to the point where my immune system isn’t mounting a response against reactivated infections).

Other supplements* and prescriptions I currently take, many sporadically:

MitoCore
CoQ10/ubiquinol
Humic Acid
Thorne Trace Minerals
Thorne Riboflavin-5-phosphate
Thorne Niacel
Thorne vitamin D3+K2
Thorne B complex #6
Magnesium malate
Magnesium glycinate
Jigsaw magnesium
Potassium gluconate
Biotin
Thiamin
Vitamin A
Vitamin C
Wormwood
HCL + gentian + pepsin
Enzymedica Digest Basic
Enzymedica Digest Spectrum
Charcoal
Levothyroxine (100mcg/day)
Liothyronine (15mcg twice/day)
Prednisone (3mg), Benadryl (25mg), Zantac (10mg), fluids (sodium chloride 0.9%, 1 liter) and Gamunex-C (5g) during infusions.

*By the way, all the supplement links here are for Pure Formulas (and all brands are gluten-free, soy-free and well-regarded). I am not affiliated with them in any way and I can’t get kick-backs if you buy something from these links like lots of bloggers that make money that way (although, maybe I should look into that!). I’ve just done a lot of research and they are consistently the best for me. If you decide to order from them and you want to be a kind and selfless friend, you can use my referral code: RRKMLW or shop here. Once you complete an order (without using any of your own reward points), I get a $10 credit. 😀 I like Pure Formulas because a) free shipping with no minimum; b) 2-day shipping always if you have ShopRunner, which I do through my AmEx; c) you earn cash credits for your orders; d) you can return products you have problems with, even if opened; and e) I have contacted many supplement manufacturers to ask about recommended online retailers (because I’ve read some scary articles about knock-off supplements on Amazon) and almost all of them have told me Pure Formulas is reputable. Last thought: if you comment below with your Pure Formulas referral code I will use one whenever I order (which is often).