[sparkkeh]

#1059750

Please excuse the “tongue in cheek” humor in here – it’s how I deal with stuff that scares me.

I’m 35, have a partner of 15 years and 4 now grown stepkids, two of whom live here, and two grandkids. My life is a hot mess most of the time – I mean, have you tried to clean up the house while a toddler is running behind you un-cleaning it? Anyway…

So, all my life I’ve had symptoms of hypothyroidism. Cold all the time, low-level depression that doesn’t respond to SSRIs, fatigue, heavy menstruation, etc. Just … almost right down the list. I finally convinced my PCP to test my thyroid, and she did – part at my request and partly because she said my thyroid felt “off”. So they do the blood tests in August, and do an ultrasound of my thyroid. There’s a couple little nodules, so off to the endocrinologist I go. More bloodwork, including vitamins and an 8 hour glucose tolerance – 19 vials of blood that day. Terrible day. Anyway, thyroid still within normal parameters, perhaps a little “low normal”. She says it’s Hashimotos – that i have thyroid antibodies, etc, but even if symptomatic, she can’t treat if my levels are normal.

Blah. So while this is happening, I get …. DUMDUMDUM… The new norovirus. My whole house gets it. My partner, 3 kids, and 2 grandkids. The barf-ocalypse. It was miserable. Everyone else gets better. I keep having… problems. Problems that aren’t funny at all. Takes me a full week after everyone else is better – even those who got it FROM me.

So then, I start to feel REALLY BAD. Just absolutely craptastic. I can’t sleep, I am STARVING. I can’t stop eating. I’m dropping weight like someone’s peeling it off me – and i’m 6′ tall and really fat, so this is new. I’m anxious and kind of mean, snapping at people in ways that’s just not normal for me. On the other hand, my depression seems to have lifted for the first time in ten years. The world has COLOR again. But then my legs stop working. First just having trouble standing up off the couch (which admittedly is very low to the ground – my behind is on my ankles when I am on the edge), then trouble getting up the stairs. By mid-February, I’m having to pull myself up the stairs with my arms, using the bannister, and I’ve twice been sobbing on the potty because I CANT STAND UP – my legs are quivery like I’ve got muscle failure. Then my arms start to fail. I lift my 11 month old granddaughter and nearly drop her. My hands are shaking like I’m on crack. (I’m not.) I call my doctor, throroughly freaking out, and they repeat the thyroid tests… and she calls me back freaking out because in 2 months, my TSH has dropped to .02, my other numbers are 6 or 7 times higher than they’re supposed to be, my heart rates resting at 144 and apparently this is BAD.

So she puts me on metoprolol and methimazole.

She didn’t ask if I had asthma. I do.

So, once I got released from the emergency room with strict orders not to take it anymore (um, duh?), she says “yeah, come see me.”

More bloodwork. Not Hashimoto’s. (yeah, no kidding?) Graves. Now I’m freaking terrified. Losing my shit. When I was in college, one of my best friends was a scrawny little guy named Matt. He had Graves, too. Only he was in college, and his parents cut him off when he came out, so he had no insurance – so no meds. One day, he went out bowling with his twin brother and some friends, came home and went to bed. A couple hours later, someone’s like … Matt’s asleep already? And he’d died – in his sleep. Heart failure from untreated hyperthyroid.

Now I’m freaking out too, and of course my endo’s crazy busy and hasn’t really been able to explain everything to me to my satisfaction, so I’m reading medical journals and asking Dr. Google (not a great thing to do!).

Anyway, fast forward 3 weeks. They said I can skip the atenolol except when I feel like I need it for symptom control (if my heart starts racing or I feel too panicky or too much insomnia), and stay on the methiamazole. I take that s*** like it’s religion – even though it tastes nasty if i don’t swallow it fast enough.

My legs are 90% back to normal, and my arms. My heart is at a rate that’s high for me and normal for regular people (70ish resting HR), my BP is going back down. The anxiety is lower, my depression’s still gone, and I can sleep a few hours a night most nights.

I am deeply in love with methiamazole. LOL. Please don’t tell my partner, her feelings would be hurt.

…… There’s the short-form backstory. Now for the questions.

I have other auto-immune diseases: Localized (non-progressive) scleroderma – morphea type. Mild narcolepsy. Endometriosis.

1) Did the stomach flu trigger the Graves? Seriously, it’s like my thyroid went batsh…… yeah, broke down just about the same time. Perhaps just pushed me over the edge?

2) Are the other autoimmunities related to the Graves?

3) Is there some kind of dietary change that will help me feel better? I told my doctor I was freaking starving all the time and I’d dropped 18 pounds in under 2 weeks, and her answer was “don’t eat.” I was like, WHAT? I wake up in the middle of the night with my stomach growling so loud it has woke my partner up before! I can’t think about anything but food! and she says “Don’t eat. This is your chance to lose weight.” *headdesk* I ‘m not going to stop eating and get back on the yo-yo diet train, but if there’s some kind of adjustment I can make…

4) It looks like the methimazole isn’t a cure, but just a treatment. Will I have to take it forever? Does Graves just “turn off” like scleroderma does? Like remissions?

I have more questions, but I can’t sit still much longer

Any advice or… maybe I’m just glad to see I’m not alone. Thanks, y’all.

[Kimberly]

#1177254

Hello and welcome! I’m sorry to hear that you’ve had to go through all this, but am glad that you found us. Keep in mind that we are fellow patients here, not docs, but here are a few thoughts…

1. The current theory is that certain individuals are genetically predisposed to getting an autoimmune disease — and then some “trigger” actually activates the disease. The trigger might be stress, a viral illness, or something in the environment. And it’s not at all understood why this trigger might bring about different autoimmune diseases in different people – Graves’ in one person, Lupus in another, and Rheumatoid Arthritis in still another, etc. So it’s hard to say with any certainty, but the illness certainly could have been a factor.

2. Scleroderma is definitely autoimmune, and I’ve heard some speculation that narcolepsy and endometriosis might be autoimmune as well. I saw one stat that noted that patients with Graves’ have about a 10% chance of having one or more other autoimmune conditions as well.

3. Although there is no one diet that is proven to help Graves’, we had a nutritionist at our 2009 conference suggest the following for patients who are losing weight. You are right to ask about this, as weight lost with hyperthyroidism tends to be muscle mass, which is NOT “good” weight loss!
* Add a serving of the following healthy calorie dense foods to each meal: 12 unsalted nuts, ¼ avocado, 1TB olive oil, 1oz cheese.
* Include a healthy snack in between each meal.
* Include at least 0.8g protein daily for each kilogram of body weight.

4. Yes, in some cases, Graves’ can go into remission following a period of treatment with anti-thyroid drugs. Other patients end up maintaining long-term on a low dose of the meds. Still other patients will choose a “definitive” treatment like surgery or RAI. (All three have pros and cons, so it’s important to do your research before making a final decision).

Take care – and please check back to let us know how you are doing!

[LaurelM]

#1177255

Hi!

Sorry you are dealing the GD but glad you found a diagnosis and this forum. I used Methimazole (I always want to shorten that to Meth but people could get the wrong idea ) my first diagnosed episode about 6 years ago. I had about a 6 year remission and am back on an ATD. I totally agree that they taste terrible. It took me about 6 weeks to feel 80% normal and by 3 months I’d say I was at 90-95% normal. I was also postpartum so there may have been other factors in the lenght of time it took until I was feeling better.

I also had the extreme hunger you described. I recall having dinner at a friend’s home and having seconds, thirds, cleaning out the serving bowls, and then finishing my husband’s leftovers. I still remember the wide-eyed looks on their faces at the amount of food I had just packed away. The one dietary caution you may want to be aware of is to avoid seaweed/kelp while you are hyper. Too much iodine is like throwing gas on the fire right now so no sushi binges.

Best wishes,
Laurel

[sparkkeh]

#1177256

LOL @ sushi binges … i HATE seaweed/kelp/nori *shudder* not an issue at all to avoid it.

I’m kind of aggravated because people are all “grats on your weight loss, fattie mcfatpants” and my endo was like “i know you’re hungry but don’t eat, this is your chance to lose weight” (i’ve been fat all my life, everyone in my family is fat, and i’m the healthiest one in my family because i recognized early that fighting my body was counter productive. i’m the one who doesn’t diet, and who doesn’t have high cholesterol, and who doesn’t have diabetes, etc.)

…. anyway, it’s been about a month on meds now and i feel … AMAZING. like… better than I’ve ever felt in my whole life. i am not tired all the time, not drowning in soul-sucking depression, can keep up with my grandson easily, … i can not express how much better i feel.

it makes me wonder how long my thyroid’s been screwed up! also, at my weight… i’m thinking the amount of protein you suggest is impossible (works out to about 120g of protein a day LOL) but i am making sure i get some.

[Kimberly]

#1177257

Ugh, sorry for all the uneducated and insensitive comments, but SO glad to hear that you are feeling great a month into treatment. Take care!

[Steph82]

#1177258

People are dumb! I’m recently diagnosed as well and I have had so many women say to me “I wish I had a thyroid problem, then I can lose some weight!” Yeah I don’t think you want this! I’m not even losing, i’m gaining!

[Author]

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