December 06, 2004

• Wish I could say I knew something more than I do. It's an immune disorder, right? Does she know that a ton of science has been directed to immune disorders because of AIDS? If she hasn't already, here's Medline.
• Hmm.. What other side effects do you have in mind? I was diagnosed with Graves disease a few years ago (just what my young male ego needed - the disease everyone's mom seems to come down wiith) I currently have the bugger in remission but have been told to expect it to come back some time in the short-/medium-/long-term. As I understand it, I'll be on that synthetic hormone sooner or later, but I've been there are basically no side effects outside of what you experience when your level needs tweaking. (I'm no fan of taking drugs long term of course, but at least you're just replacing a hormone you normally produce.) But I'd be real, real interested if you know about particular side effects associated with the synthetic hormone.
• Er, sorry, that was a little self-absorved: I believe it's quite idiosyncratic, but I think the symptoms of the untreated disease often include depression and anxiety, which I find quite spooky. Don't mean to be pollyanna, but I think the treatment is relatively safe and routine, for what that's worth.
• So is there sort of an oder of symptoms? Graves --> hyper/hypothyroid --> other side effects? That doesn't seem so bad, then. My mother says she has all but three of the symptoms listed in the FAQ I linked to (I didn't ask which ones). If she makes sure she keeps taking her hormone tablets, they should ease, I guess, from what you're saying. I don't know anything about the hormone treatment, although I do know that when she forgets to take them, she suffers from really bad mood swings and headaches.
• While every case is different, I can tell you that Grave's when caught and treated early, can be managed with minimal changes in quality of life. It more than likely will require life-long medication, but as previously noted, the medication is basically providing the homeostasis or balance that patient's with thyroid disease have lost. Of all the drugs out there, these are some of the most well-studied, and longest in use, with excellent side-effect profiles. Those with longstanding, severe Grave's that is left untreated run the risk of heart failure (which is usually reversible), eye problems, and osteoporosis. All-in-all, I'd say it's a bit of a drag, but yes, she'll probably be fine if she keeps up with it. My mom's got it, and she's been doing well for years.
• My mom has Grave's disease also. She had the radiation therapy years ago and has been on the synthetic hormone ever since. I think the biggest issue for her has been making sure that she's taking the correct dosage. Dosage too low - coldness, low energy, dry skin. Too high - hot flashes, bulging eyes, pulse racing. But she sees an endocrinologist for it and he keeps her on an even keel. If your mom can afford a specialist, that might be better than a GP - my mom was undertreated for years because her GP didn't know anything about the disease. You can inherit thyroid problems, so you should plan to be tested regularly as well. My two older sisters have both developed hypothyroidism in recent years so I make sure to get tested. Also, there's a correlation with other autoimmune disorders - In my family we have two different kinds of diabetes, rheumatoid arthritis, psoriasis, "pernicious" anemia, and some other stuff I'm forgetting. Not to scare you, just wanted to highlight the importance of regular blood tests.
• I have a couple of friends who have Grave's Disease. They both went through thyroid radiation to deactivate the gland and they take thyroid replacement hormone. Both have an excellent long term prognosis. I can understand your mom's anxiety, but hopefully stories like these will help to reassure her. One friend said that it takes a few weeks after radiation therapy for the hyperthyroid symptoms to subside. So, while your mom may be worried if she didn't experience immediate relief, she should start feeling more normal shortly. Also, it will probably take a few iterations with the doctor to establish the optimal level of thyroid hormone. She'll feel better over time as her dose is refined.
• Thanks for all the comments. Mum had her radiation therapy back in 2000 -- I wonder why they didn't diagnose her with it then -- and it sounds like maybe she should see a specialist to get the dosage right, or at least make sure she's on track at the moment. She obviously shouldn't have the symptoms she says she has if she was treating it properly.
• Some endocrinologists even prefer just to fully ablate the whole darn gland rather than futz around with keeping the level just right over time. (Just to add to the chorus that taking the synthetic hormone for long periods is supposedly very benign, which is pleasant and unusual news from the medical sciences.)
• Treating Graves disease nearly always leads to a breakdown of the thyroid, which leads to hypothyroidism (which is what I have). Treatment is usually simple and effective (sodium thyroxin pills every day). Even under treatment, she will probably have weight issues for the foreseeable future, and become unable to exert herself as she used to do, but will otherwise probably function quite normally. Depression is a common side effect of thyroid disorders, and needs to be treated separately. The symptoms of depression my looked to me like symptoms of under-treated hypothyroidism. Medical professionals should know the difference. If you'll excuse me, I'm off to get a blood test this morning.
• /sends global hug to all monkeys currently dealing with parental medical situations. Not easy, seeing the roles reversed... hope you all gather the strenght to cope with it.

• Depression is a common side effect of thyroid disorders, and needs to be treated separately.

  <plug>Crazymeds is useful here. Depressives I know swear by it for sanity checking treatment options.</plug>
• My mother was diagnosed with Graves almost twenty years ago. She had the radiation treatment and came out of it with mild hypothyroidism. She takes a low dose of synthetic hormone every other day, and has no weight gain, side-effects from it at all. Her doctor does do occasional thyroid uptake tests to make sure her dosage is right, which requires that she go off her medicine for a while, and then she has problems with fatigue, muscle aches, and inability to concentrate, that go away as soon as she starts taking the hormone again. Other than that, and the little pill (very inexpensive prescription, I might add) that she takes every other day, it's like she never had it. IANAD, but from my mother's experience I'd say your mother shouldn't be having any symptoms at all, at this point. Unless perhaps the radiation treatment didn't fully "take", which was one possible outcome they presented my mother with.
• Two of my friends have Graves diseaese. They both had their thyroid irradiated and take synthroid long-term. Neither has any serious issues except the need to keep their meds adjusted. They both remark that they know they need a med adjustment if their hair starts to get thin. Otherwise, no problems.
• My aunt has it - basically, she's very hyperthyroidic, so she doesn't gain weight, she very active and has lots of energy. And the rest of in the family thought that was just her personality! She's known about it for a while, been through remission, and now it's back again. The only difference I see is that she has to be careful to take her medication, which she sometimes jokingly refers to as her "fatty pill," otherwise she may lose too much weight. Apparently, people who have her hyperthyroidic symptoms sometimes have trouble sleeping too, but she's never had that problem.
• IANAD, but from my mother's experience I'd say your mother shouldn't be having any symptoms at all, at this point. Again, different people have different experiences. I have few problems with my hypothyroidism. A cow-orker of mine has tremendous trouble with hers, necessitating even admission to hospital. Shades of grey, people, shades of grey.
• My mom had it, and had some difficulties with her eyes. She had to use "artificial tears" to keep her eyes moist, and couldn't wear contacts anymore. I don't know if this is common or not, though.
• Just before she went in for testing, my friend was having serious sleep problems. She didn't know it though, she just thought she was sleeping. One night, she leaped out of bed, grabbed a phone book and screamed in my face 'This is a MAP! And a MAP is MADE of PAPER!' She had mood swings that would make a Bipolar I jealous.... It was like living with Ren and Stimpy.