Remember the diet I was on back in October? It’s called The Whole 30 and it really works. The problem is that it’s difficult to stick to – cuts out all grains and grain-like seeds (like corn and quinoa), dairy, legumes (including peanuts), sugar (even artificial or “natural” like stevia), and oils other than olive and coconut. I did very well; lost almost 20 pounds and a pants size in the first three weeks, all with no exercise. The food was delicious and I did not cheat…until the end of the three weeks. That’s when both boys were home sick from school for two days. Home because they each threw up, but neither was sick enough to dampen his energy one tiny bit. At the end of that second day home with them, I was making gluten-free chicken nuggets and I stuck one in my mouth. I hadn’t had a chance to fix anything for myself to eat and I just kind of cracked. It went downhill from there and the only good news is that I’ve gained less than five pounds back in the two-plus months since. I’m still wearing the smaller pants, though just barely.
I heard about the diet from a friend who tried it hoping it would relieve some GI issues. She had great results. I have GI issues as well, but I chose the diet because I was afraid I had developed diabetes. I had gestational diabetes when I was pregnant with BamBam and experienced some hypoglycemic episodes then, but they stopped after he was born. Unfortunately for me, they started again last May. Around the same time, I started having hot flashes. The two explanations for those symptoms that I could think of were diabetes and menopause. I figured the diet couldn’t hurt either way.
The diet also purported to help with various autoimmune diseases, none of which I thought applied to me, and chronic systemic inflammation, which TOTALLY applied to me. I’ll come back to all of that, though.
So, I stopped the diet in early November. In mid-November, after a talk with BamBam’s teachers and some of his therapists, I decided to allow the boys to have some gluten again – they’d been off it since August. It doesn’t seem to affect their behavior, and there seems to be a threshold under which it doesn’t affect their GI systems either. In early December, two friends who have hypothyroid disorders told me separately that they think I have a type of hypothyroidism called Hashimoto’s disease. Furthermore, one of them, who knows me really well, told me the reason she thinks I have it is that I remind her of her before she was treated.
Now, my therapist has been telling me to have my thyroid checked for a couple of years. And I have. Up to that point, I’d had it checked four times in the last three years. All of those tests were within the normal range given by the labs doing the testing. When I told that to my friend, they told me there was a controversy about what ranges to use and that the labs generally went with the wider ranges. So I began to research it and found that she was absolutely right.
More than that, I realized that the symptoms that led me to start the Whole 30 diet could be explained by Hashimoto’s disease. And that Hashimoto’s is an autoimmune disorder. Remember how I said the diet I was on is supposed to address the symptoms of autoimmune disorders? Turns out Hashimoto’s is listed among them in that book. So, another reason to go on the diet. Actually, it’s more a way of eating than a diet.
I called my doctor’s office and asked for a referral to an endocrinologist to discuss possible thyroid issues. I threw in diabetes in case my doc was unwilling to make the referral, but I’m not sure the office even asked her about it. I called the place they referred me to and made an appointment. It was for January 3rd, my birthday, which was almost a month away at the time. Also, our insurance was set to change with the new year, so I called another place to see if I could get in sooner, but the soonest they had was February.
About a week later, I realized I was limiting myself by only checking practitioners close to me. A bigger clinic, one in, say, Seattle, might be able to get me in sooner. So I called the one where both my friends are seen. They had one doctor with a few appointments available on December 26th and 27th. Perfect, I thought. It wasn’t the doctor either of my friends see (I asked them later), but same clinic and who was I to be picky? I told them I’d take it. They told me to hold on because they couldn’t make an appointment until they had a referral from my doctor. No problem, I said, I’ll call them right now.
And I did. I told the staff I needed another referral for hypothyroid sent to this other doctor. They were a little put out, but said they’d do it. The guy asked what my symptoms were and I think this is where I made my mistake. I said something like, “I don’t know, whatever was on the other one…fatigue.” But the guy said he would send it. Actually, he said he’d have the clinic send it. You see, I go to a satellite clinic of a larger organization, so they have a central office that handles stuff like this by telling the satellites to do it. I’ve thought many times about changing doctors, but I really like the fact that they have my test results online where I can look at them myself and that I can email my doctor directly and make appointments online. I’ll put up with a lot of crap for good technology.
I called the Seattle endo place back the next day, but they hadn’t received the referral yet. I called again a few days later and it still wasn’t there. So, I called my doctor’s bureaucrats and was told that it was marked pending, but that she couldn’t see why and would tell the clinic to fax the referral right away.
I called the Seattle endo office again a few days later and still no referral. I called my doctor’s bureaucrats again and was told by yet another person that it was pending. Pending what? Pending verification of insurance. Here’s how the rest of that conversation went, with me getting more steamed by the nanosecond:
Me: Why do you need to verify my insurance for a referral?
Phone Bureaucrat: Well, we need to make sure it’s covered by your insurance policy.
Me: Yeah, I understand why you verify insurance in general, but why do you need to verify it for me to see an outside doctor? You’re just doing the referral, not the service.
PhB: Yes, but we need to verify that your insurance will pay for it.
Me: But this is the doctor that I want to see and I’m willing to pay out of pocket for the visit even if my insurance company doesn’t pay. I just need the referral before they’ll see me. I need the referral before they’ll even let me make the appointment.
FB: Well, we just need to verify that insurance will pay for it.
Me: The payment won’t be coming to you guys anyway, so why the fuck do you care?
Poor FB: I’ll have my supervisor call you back.
You’ve probably already guessed that I never heard back from his supervisor. I did call the Seattle endo office back an hour later and VOILA! My referral had magically arrived. What they did not have were any records on me. No labs and no chart notes, which they needed before they would make the appointment. No problem, said I, I can email the labs to you right now. But they only have ability for fax. Which meant I was going to Kinko’s to spend upwards of $20 to fax them my labs because faxing no longer works with our home phone service. So I trekked out to Kinko’s that afternoon and plunked down my credit card to send them my labs.
And didn’t hear from them for a week, when I broke down and called them. And they still wouldn’t make an appointment for me. Because the lovely people at my doctor’s office had listed fatigue as my only symptom. And my labs show that my thyroid hormones are within the normal range. I argued with them about the validity of those ranges, but they wouldn’t budge. They gave me two options to get an appointment:
Option 1: Have my doctor call the endocrinologist on Monday (December 24th, by the way) to make the case for evaluating me for a hypothyroid disorder. My doctor. The one who has been telling me for three years that my thyroid function is fine and I should just lose weight. Yeah, that’s gonna happen.
Option 2: Have my thyroid levels tested again and send them in. If they were outside the normal range, I could make an appointment with the endocrinologist.
So much for getting in to an endocrinologist before the end of the year. But I did take their advice and got the thyroid tests done again. I already had orders on file for a glucose and lipid panel, so I asked to add the thyroid tests on to those. And I just kept the appointment on the third with the endocrinologist who is closer to me and allowed me to make an appointment the first time I asked for one. And I have resisted the nearly overpowering impulse to write a letter to the Seattle endocrinologist demanding he remove the following statement from his web bio:
- “I strive to empower my patients to be active participants in their health care. By thoroughly explaining medical problems and treatment options, my goal is to educate and engage each individual in the decision-making process.”
I’d call that false advertising.
I found my thyroid tests disappointing. They were still within the standard range. Worse, my TSH was actually lower. Or I thought it was worse, until I looked at the functional ranges given in a book recommended by one of my friends called Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian, DHSc, DC, MS. According to that book, the pattern of TSH levels in Hashimoto’s is all over the map, so at any time it can be in, above, or below the standard range. What’s more, my Free T4 and Free T3 levels along with my TSH fit perfectly with the pattern listed for hypothyroid secondary to the pituitary gland. I printed out those pages to take with me to my appointment so I could use them to fight for an antibody test (the definitive test for Hashimoto’s) if I needed to.
That appointment was this morning. The endocrinologist was not very impressed with my TSH levels, though she did note that my T4 levels were consistently straddling the low number of the standard range. She was, however, very concerned about my glucose levels and, especially, my cholesterol. So, I got the standard lecture about diet and exercise and an admonishment to take my cholesterol medications (I stopped taking them while I was on the diet). I endured and promised I would (that was my plan anyway) and that I would figure out a way to exercise around my plantar fasciitis. My glucose levels aren’t high enough to make me a diabetic, thanks in part, I think, to my three weeks without sugar, but my fasting blood glucose is consistently over 100, so she prescribed a medication that’s supposed to help with that. And she ordered the antibody tests for Hashimoto’s. I didn’t even have to pull out my research. She told me I could wait and do the antibody test in six weeks when I have my cholesterol and glucose checked if I didn’t want to have my blood drawn twice. She obviously doesn’t know me at all. I drove straight to the phlebotomist from her office. The results should be in by Monday. I just wish her office had the technology to put them online.
Insomnia and fatigue are two of the symptoms of Hashimoto’s thyroiditis and I have both in spades right now. So, if this post is a little flatter than my usual stuff, I’m totally blaming it on that.
What I got from this?
You are amazing and powerful and smart and strong and awesome.
Also? Happy fucking birthday!
What Julie said. I’m impressed how doggedly you pursued this without giving up in the face of so much crap. I truly deeply hope that someone can get to the bottom of this and figure out what is going on with you and give you the tools you need to take care of yourself.
And HAPPY BIRTHDAY!!!! I was scrolling down to post on Facebook for you and then boy child needed the computer for homework and I never got it back until I was too sleepy to see.
Good for you. I have been seeing an endocrinologist for years and I love him. Granted I am still chubby – but that is on me, but 2013 is the year for a change. And just an FYI – if she stuck you on actos, that causes weight gain, switch. (I learned that the hard way 🙂 )
Thyroiditis and auto-immune diseases run in my family. My mother was hypothryroid, my sister had her thyroid killed when she was in her 30’s, and my brother was diagnosed around the age of 40. My older sister probably is, but just hasn’t been properly diagnosed, and also deals with insurance assholes so it probably won’t ever happen. The endocrinologist is next on my list even though every time they do my levels they’re within normal range. But as you get older your chances for the disease increase, and I’ve got this annoying throat flutter thing now that my mother said she used to get, so who knows? Autoimmune issues also run rampant but I’m hoping to avoid those. My dad was an alcoholic and I got that big disease, so I’m hoping I get a pass on my mother’s diseases! Seems only fair, right?
Good for you for sticking to your guns. Insurance companies will wear you down to save money because most folks give up. Don’t–you’re worth it. Happy Birthday!
My days you’ve been working hard at all this! Phew!
I don’t know what your plantar fasciitis is like, or what you’ve tried for it, so this is pure assvice… Some people try a night splint. I got one for Christmas and have been slowly introducing it to my foot, lol. (Tightening the straps a little each night.) Some people have great results with them–my mother’s was totally healed. Others just find it helps.
Also, when I started back on an on-my-feet job in October I bought “super feet” shoe liners. They’re just $30, and have helped my p.f. a LOT. Last summer I was walking my mum’s dogs every day, and started having a lot of problems with that foot. Now I stand on my feet 40 hours/week and have less pain than I did in the summer.
Best of luck and vibes for all the rest! My dad’s been on the Marshall Protocol for years and it’s helped him a lot with his sarcoidosis. Some people think it’s quackery, but other people with autoimmune problems find it amazing.