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.

Best Endocrinologist Ever.

Every time I have an appointment with my endocrinologist, I hem and haw about whether I should cancel it. It’s on the other side of town, $50 round-trip in an Uber, it only ever lasts about 20 minutes and couldn’t she just look at my thyroid lab results and email me about whether to stick with my current hormone dosages? Well, each time I go, I am so grateful for this doctor (last week I told her nurse I would walk on hot coals for Dr. B) and I vow to come straight home and write an update so I can remember everything she said. I never have managed to do this and the visit summaries hardly mention anything at all, so today I’m going to write a general update of her treatment.

I’ve seen a lot of endocrinologists in the last six years and they have all, without exception, been kind of odd, stoic and monosyllabic. Until Dr. B. She’s vibrant and engaged (after seeing her, I always mourn my lack of brain energy a little more), listens closely, talks about her ideas out loud, thinks outside of the box and is interested in conditions not typically related to the endocrine system. Imagine that: a big hospital allopathic endocrinologist taking the whole body into account!

The first time I saw her a year ago, I told her my basic story (anaphylaxis 2001-2002, vasovagal collapse 2005-2011, thyroid goiters 2009, radioiodine ablation 2010, SICK 2011), assuming she’d check my thyroid and update my prescription as per usual — and she did, but she also ordered pituitary blood tests, a Cortrosyn stimulation test (CST) (otherwise known as an ACTH stimulation test — it measures how well the adrenal glands respond to ACTH), referred me to two neurologists — one that specialises in headaches and one that specialises in dysautonomia — and said we would consider placing a continuous glucose monitoring device to assess the drops in my blood sugar (good news is, my blood sugar crashes got much better, possibly because I am eating all foods again and have put on weight). No other endocrinologist had ever suggested any of these things.

I was dreading the CST because of my reactivity and intravenous injections of anything don’t allow me to start low and slow, but it was fine. I did my research beforehand (yes, they were they only using 1mcg of Cortrosyn; no, I didn’t need to fast; no, it didn’t need to be timed according to the follicular phase of my menstrual cycle; no, I didn’t need to be off bioidentical hormones; and, yes, my husband could be with me), so I felt comfortable about the procedure and the results were normal.

The pituitary testing showed low LH (luteinizing hormone), DHEA and IGF-1. Because of the latter, at our next appointment Dr. B ordered a pituitary MRI to “leave no stone unturned” (LOVE her). The MRI was normal, but she emphasised that it was less reliable because of my unwillingness to use contrast (I didn’t think the risks of a reaction outweighed the benefits of a better MRI — and she was ok with that). She also gave me a prescription for Florinef to see if it would help with my hypotension (blood pressure was 80/60 at this appointment). I trialed it for a month (starting at 0.0125mg (!!), working up to 0.1mg) and thought it might be increasing my headaches (but not my blood pressure, of course), so I stopped, but it’s still on my list to retry.

My thyroid levels have consistently been tanked for the last 6 years and at every appointment Dr. B would tweak my meds. I’ve gone from 50mcg/day of levothyroxine to 100 to 125 and from 5mcg/liothyronine to 10 and — this is exciting — when I told her my naturopath suggested much higher T3 and lower T4, Dr. B said, “I’m totally open to that, let’s try it.” 😮 Typically allopathic endocrinologists and NDs do not see eye to eye on treatment and optimal thyroid levels and often one doctor will be resistant to another doctor’s suggestions, especially when the suggestion comes from someone who isn’t a specialist. Dr. B has no ego getting in the way. So, we increased my T3 to 15mcg twice/day and lowered T4 to 100mcg. I really don’t know if it has helped, but she seems more satisfied with my thyroid levels. She told me to watch out for tremors, heart palpitations and insomnia, but they are all within my normal constellation of symptoms, so who knows (although, as I’m typing this, I realise that my quite-vicious nightly palpitations haven’t happened in a while– maybe weeks). She diagnosed me with “euthyroid sick syndrome” which essentially means your thyroid will stay sick until the underlying chronic illness gets better.

I saw a headache neurologist and a dysautonomia specialist (more on both of those in separate posts), but neither of them were the ones to which Dr. B referred me. And — another reason to love her — she had no problem with that and was still interested in what they had to say. Even better, when I told her the dysautonomia specialist didn’t have much to offer and essentially told me just to make sure I don’t decondition any further, Dr. B raised her eyebrows in surprise and kind of dismissed this, still interested in helping me fix this piece of the puzzle (those of you that haven’t done the doctor rounds might not realise that almost all of them tell you to simply exercise more (or gain/lose weight) (or take antidepressants), so I expected Dr. B to take the specialist’s assessment as bible and agree that I was just deconditioned). She suggested I do a growth hormone challenge (it involves a 17-hour fast, an 8am check-in and a 5-hour test where they give intravenous glucagon and then measure human growth hormone (HGH) response through blood draws) and said the worst side effect she’d seen was vomiting. I wanted to vomit at the thought of getting to a hospital at 8 in the morning. I went home to do some research; that was in July of last year.

When I saw her again at the end of September, I hadn’t done the HGH challenge and she didn’t give me a hard time at all. Three months after that appointment I still hadn’t found the nerve, so I emailed her a long message about my glucagon fears (those of you with mast cell/anaphylaxis/medication sensitivity issues can read my email* below for the reasons it gave me pause) which any other specialist would either not answer or reply that I should come in for an appointment to discuss. Instead, she sent me a very thoughtful, validating reply (not “For fuck sake, stop being such a scaredy-cat and do the bloody test since I’m the one doctor who is investigating all these things!”) and offered an alternative to glucagon — an insulin challenge test — which I agreed to … and then never did. They give you intravenous insulin, drop your blood sugar to 40 and then test HGH. I told her I was more comfortable with the devil I knew (hypoglycemia) then the one I didn’t. But, it turns out I’m not really comfortable with voluntarily meeting any devil. I’ve had my blood sugar drop into the 40s. It was absolutely horrific — one of the worst feelings I’ve ever felt. And, although they give you intravenous glucose right afterwards, I still couldn’t bring myself to do this test and subject myself to the crash when I thought they probably wouldn’t find anything.

So, I waited until my appointment this month — 8 months after she first wanted to investigate this avenue — and told her of my fears about the insulin challenge test as well. I expected her to just give up, to say there’s probably nothing wrong there, anyway, but she didn’t. She said there was an additional reason to do the insulin challenge (other than for HGH output) and that was that it can pick up a hypothalamus issue that the glucagon stimulation test can’t. Ok, I can get on board since it’s a two-fer. However, in another display of out-of-the-box-ness and medical generosity, she suggested I just try HGH injections without doing the challenge test. She said she had two other patients with the dyautonomia-mast cell-EDS trifecta (more on my EDS diagnosis at another time) and, even though neither one flunked the stimulation test, they tried HGH and had really good results. A friend of my sister-in-law’s had a lot of success with HGH and it has always been in the back of my head as something to try when I win the lotto. I read it cost thousands of dollars, but Dr. B’s prescription is “only” $138/month, so I’m on board. If/when I get the nerve, I can stop the HGH for a week and do the challenge test and, if I fail, insurance will pay for my prescription. An added bonus is my nurse who comes to my home every week (to give me intravenous fluids with my immunoglobulin infusions) can show me how to subcutaneously inject the HGH and I don’t need to go across town for a tutorial appointment.

Gratitude for good doctors! Wish me luck with the HGH.

Throwback Thursday: Autoimmune Thyroid Disease

I have had an itch under my jaw, deep in the tissue of my neck for years. In 2009, I decided to mention it to a doctor one day and, although she didn’t feel anything abnormal in the area of the itch, she did casually say, “You do have a lump on your thyroid, though.” I had a thyroid nuclear test done and a radioactive iodine uptake test which showed two toxic multinodular goiters.”Toxic”, meaning thyroid hormone was being produced at an increased rate, which is why my thyroid stimulating hormone (TSH) tested so low. “Multinodular” because it was a late-stage goiter, meaning it had been around for a while and had a chance to grow and become lumpy. In my case, I had been hyperthyroid for at least 7 years ~ my first abnormal TSH result was in 2002, but my doctors never pursued it and I didn’t know enough to insist.

This was my first experience with specialists. I had only ever dealt with general practitioners and emergency room doctors. The research doctors that diagnosed me were bizarre. They came into the room and peered at me like I was a specimen, their faces frozen into pensive seriousness. I started cracking jokes to break the tension, but they didn’t respond in kind. They asked me questions with long quiet pauses in between, during which they would look at each other and mumble and nod: Do you have flushing? Are you intolerant to heat? Do you shake? Stick out your tongue. Hold out your hand. Have you experienced any anxiety symptoms?  I finally stopped them and asked what they had found ~ they had told me nothing! Do I have cancer? No. Do I need surgery? No. Okay, now you can ask me more questions.

I had to do both nuclear medicine tests twice because too much time elapsed from my first round of testing to go forward with treatment ~ radioiodine ablation. After you have radiation treatment, you must stay away from people and animals for a few weeks, use different cutlery, use a different toilet and/or flush twice. It seemed like a big decision, but the doctors told me it was a terminal problem. I’ll never forget that. They said there wasn’t a very long life expectancy for people with untreated hyperthyroidism. Huh? Seriously? I didn’t seem to have a choice. So, I did it. I killed the whole thyroid and started taking hormones every day for the rest of my life. I never missed a day of work through this experience. During the segregation weeks, I holed up in the restaurant office, alone. I remember encountering a pregnant lady on my way to the rarely-used toilet in the basement and leaping back out of her space as if I’d been electrocuted… high-tailing back into the office so she wouldn’t be exposed to radiation. What must she have thought? 😉

Interestingly, I never felt like the symptoms abated. The flushing and hot flashes (my most visible symptoms, which I chalked up to oddly increasing self-consciousness) and the anxiety (which I blamed on my job) ebbed a little, but not much. And, of course, this was undoubtedly part of the priming of my body for ME. Hyperthyroidism and my anaphylactic episodes started about the same time. It was the beginning of the end.

Below are the photos and email that I sent to friends and family back then, hoping that it might open someone’s eyes to thyroid problems or make them listen a little bit more to their bodies. The fact that I thought I was having “devastating” and “debilitating” symptoms then strikes me as funny now… and sad. What was happening to my body because of my thyroid problems was NOTHING compared to what is happening to my body with M.E. They’re not even on the same planet … in the same universe. Can’t I go back to my old serious  health problems?

I have attached 3 pictures that I took before I got radiation treatment (ablation). The first is looking at my neck as I stand relaxed, the next is with my head back and the third was taken as I swallowed. I can’t believe I never noticed the lump on my thyroid. I can’t believe nobody else did. I can’t believe, with 7+ years of abnormal TSH (thyroid stimulating hormone) levels, neither a doctor nor I, myself, looked any closer at my neck or my symptoms.  [The radioiodine must have swelled my thyroid, however there was definitely a visible lump before treatment that I never noticed until it was pointed out -and it is unforgivable that no doctor ever took the time to look further into my bloodwork or palpate my throat.]

straight on

Head straight on.

So, I guess I’m hoping this email influences everyone to pay closer attention to their bodies. Look closer: know every line and lump so you’ll recognise changes. Listen closer: if your body is constantly telling you it’s way too hot or way too cold or way too tired or way too hungry, don’t ignore it. Don’t wait for a doctor to find out what’s wrong with you ~ question everything that feels wrong.

It turns out I wasn’t overheated & flushing because I’d become suddenly self-conscious. It turns out I didn’t just “get lucky” with an amazing metabolism. I wasn’t having floods of anxiety that caused my heart to race & skip beats because my job was stressful. I wasn’t debilitatingly exhausted because I worked too much & didn’t sleep enough. Well, at least not entirely.

head back

Head tilted back.

It’s still going to be a long road ~ my doctors say we could be tweaking my medication for years. I still vacillate between feeling ok and feeling dizzy and wasted… I eat about half what I used to… I’ll have to take hormones forever…. But, it’s not out of the question to go to a movie after a day’s work and I don’t spend my weekends crumpled in a ball, sobbing, asking what’s wrong with me while my husband wonders what to say….

I’m angry that I spent so long feeling that way and just explaining it away. I hope this inspires everyone to take a minute to think about your body and your quality of life. It’s all too short! Take care of yourselves!

swallow

Swallowing.