Experiences and Information on Hyperthyroid aka Grave's Disease

August 24, 2005 9:00 PM

I've just been diagnosed as severely hyperthyroid, also known as Grave's Disease. I'm under the care of about 6 physicians, but want to know some more subjective information. Is there a really great book? A great tip for sleeping with my head raised on pillows? Other experimental or experiences you can pass my way would be great.

Some background information: I'm a female in my 20s, with a bit of a history of thyroid problems on both sides of the family. This went undiagnosed for 8-12 months until it basically exploded into the beginnings of a thyroid storm. I'm now on Tapazole and a betablocker (for the first month) and have several GPs, specialists, opthamologists and family working with me, treating me, keeping me under medical care. I had almost all of the symptoms, but not much orbitopathy (buggy eyes). We're going the drug route (and vitamins, including selenium, which may or may not be connected to thyroid levels) until it either doesn't work or surgery or radioactive iodine becomes necessary. I'm actually feeling better in some ways (emotionally, academically) but in others my levels have dropped (energy, hemoglobin, etc.) - again, the doctors know and are constantly monitoring this.

I'm wondering a few things:

a) Can you recommed a good book or two on the subject? Some look woefully out of date, and many websites have agendas, incorrect information or are extremely dense in medical notation. Something between these two extremes would be great.

b) Can you point me in the direction of medical or other literature on the side-effects of radioactive iodine? That seems to be one of the more prevalent treatments in the US, and the connections with opthamopathy startle me and make it more of a last-option approach than my doctors. I need to be well-informed when discussing this with them.

c) What have been your experiences? How do you feel, based on whatever choice you made (drugs, surgery, iodine) and what would you do differently? I know it's subjective, based on medical information and personal decisions, but just knowing what made someone choose one route over another is helpful to me. It lets me think of consequences and benefits that I might not have anticipated.

d) I'm continually making a list of questions to ask my doctors, but I'm obviously missing some. What kinds of things should I be worried about or on the lookout for?

e) Other than selenium, what are vitamins, important minerals or other acids that I should be taking?

Thanks in advance; this is my sock puppet account because I don't want this information linked to my personal name at this point.

posted by barnone to health & fitness (21 comments total)

"what are vitamins...." should be "what are SOME vitamins..."
posted by barnone at 9:26 PM on August 24, 2005

This went undiagnosed for 8-12 months until it basically exploded into the beginnings of a thyroid storm. I'm now on Tapazole and a betablocker (for the first month) and have several GPs, specialists, opthamologists and family working with me,

Yes, I went through this exact same thing and ended up hospitalized. My eyes did bug out and I was shaking uncontrollably. Also, I think I weighed maybe 120 lbs (I am 5'10') and looked like some wired-up meth user.

I stayed on Tapazole too for a while. In the end, I decided to take radioactive iodine. I think mostly because the idea of surgery was just too frightening.

The iodine is no cure however. After that procedure (actually, just swallowing a pill in front of the doctor) I was tested and was found to be mildly hypo-thyroid. The result is that I now take Synthroid, a thyroid supplement, on a daily basis.

This all happened to me when I was 21 years old. I'm now 37. After 15 years there have been no effects except the drudgery of the daily pill.

I don't think I would have done anything differently. What I found confusing is that I consulted two different doctors and each *strongly* urged a different course than the other doctor. This is very unsettling at a time when you need some authoritative advice. The reasons of course are that each route has its drawbacks.

You should be asking your doctors what the exact risks are with any decision and for references on the latest literature on the subject including controlled studies. Iodine treatment has not been around long enough that there is anything like clear certainty about the results. Because of so much uncertainty, the choice - which risk to choose - can become a personal option.

Feel free to email me for more information if you wish (username at gmail) Some of my decision was also based on further personal issues which I'd rather not post in a general forum.

In any case, best of luck.
posted by vacapinta at 9:34 PM on August 24, 2005

There are a number of good health-related websites out there, and I'm sure several specific to Grave's disease. To aid in your searching, you might try using the term "radioiodine ablation" or "radioactive iodine ablation," just to get some better hits on the more medical professional sites.
posted by gramcracker at 9:49 PM on August 24, 2005

You're not alone. I have it too, as well as the family history.

As with pregnant women, too much information (scary books, Internet sites of doom and gloom), can be worse for you than too little information. I opened up a book with scary buggy-eye photos and about freaked. (I have none of that, thankfully.)

I actually have NO symptoms and never had, but a physical found a super-high heart rate, which led to testing and the diagnosis. I had the radioactive iodine in January (as vacapinta says, it's just basically taking a pill) and now it's August and my blood shows I am still somewhat high. I am taking the thyroid supplement daily, but my dr just had me cut the dose since I'm still high.

Talk to your doctor, often as you feel like. Get one who doesn't mind you calling and has the time for you. And hang in there. They say 1/3 of the US may have undiagnosed thyroid issues, so by getting diagnosed, we are ahead of the game.
posted by GaelFC at 9:51 PM on August 24, 2005

I had Hashimoto's Syndrome and was experiencing hyperthyroidism which was making me an emotional wreck. I had the surgery and was back to work in two days. I take synthroid which is no big deal.

I think this worked a lot better than the medications for hyperthyroidism although with Hashimoto's, my thyroid would have bounced back and forth until it finally stopped functioning. I definitely would not have wanted to wait that out.

I would have done the radioactive iodine but my doctor thought I was a little too young for that (I was 35). I am now almost 60 and seem to be functioning fine with no thyroid and synthroid.
posted by phewbertie at 10:21 PM on August 24, 2005

I haven't experienced it personally but my best friend has. She sounds much like vacapinta in fact. Diagnosed in her early twenties (15+ years ago), took the iodine pill and now takes Synthroid (which is monitored and sometimes rarely adjusted if she isn't feeling quite right - weight & such can affect the dosage).

I certainly noticed her symptoms, mainly the eyes and that she was behaving like a real witch. She's normal now, as normal as anyone can get.
posted by LadyBonita at 11:36 PM on August 24, 2005

I take synthroid which is no big deal.

I wish I had known more about this before taking the radioactive plunge. (sigh)

I had Grave's disease for probably 7 years or more. (It often occurs in women after a profoundly tragic event such as loss of a child.) The high blood pressure, shakes, heart arrhythmia all were explained away by my GP. What was more worrisome to me was the hair loss. I asked my various hair dressers over the years and finally someone said try asking a dermatologist. And that is when I was finally tested for thyroid levels.

I went to a highly regarded endocrinologist who basically told me not to bother with other options but to go for the radioactive therapy right away.

You swallow a radioactive cocktail and then keep yourself isolated from family members for about a week. No sharing of dishes, beds, hugs, etc.

It hit me very hard. I went from having all the energy in the world to feeling as though every movement was being performed underwater. I could barely drag myself through the day and had little appetite. After three months I started on Synthroid with some slight relief, but by that time I had gained 60 pounds. 13 years later I can eat very little without gaining weight.

What I most resent is that for the rest of my life I have to be tested every 6 months whether or not I have money or insurance, in order to get my prescription renewed. I must visit my doctor, then have have my thyroid levels checked, and then schedule a follow-up consultation. 2 doctor visits (before and after) plus lab tests runs about $400 to $600 without insurance.

Sadly, even after trying Rogaine, my hair never grew back. It used to be very full and now it is very thin.
posted by Secret Life of Gravy at 8:55 AM on August 25, 2005

In January, my wife had surgery (and radioactive iodine) for thyroid cancer. She's now on Synthroid and is feeling well, but blood tests revealed that her calcium level was way low. So, she's also taking around seven Tums per day (per her doctor).

Apparently calcium uptake is controlled by the thyroid, so you may end up taking more that one pill per day if you go with the iodine.

By the way, her doctor told me that radioactive iodine has been used to treat thyroid disorders since at least the 1940s.
posted by Daddio at 10:58 AM on August 25, 2005

Apparently calcium uptake is controlled by the thyroid, so you may end up taking more that one pill per day if you go with the iodine.

I believe it's actually controlled by the parathyroid, which consists of several (I want to say 8?) small nodules on the back of the thyroid. These can be inadvertantly damaged or destroyed when the thyroid is removed. (I had thyroid cancer as well, so I remember getting checked frequently for my calcium levels for several weeks afterwards.)
posted by scody at 11:27 AM on August 25, 2005

I don't have Graves disease, but I do have thyroid cancer. For the last 4 years, I've had to go and do radioactive iodine therapy once a year because it is both the treatment AND the test for thyroid cancer. I had my thyroid removed within a few months of diagnosis.. hmm, almost five years ago now. I'm 30.

To be completely honest, my experience with synthroid and radioactive iodine has been horrible. I used to be an underweight anorexic (95 lbs), and I am now obese. My medication and my T4/TSH levels are STILL not correct. Once a year I have to wean off of my synthroid medication in order to undergo radioactive iodine treatment, and this process takes six weeks to recover from. During this weaning off and re-uptake time I am so depressed and lethargic that the only thing preventing me from committing suicide is the lack of motivation and energy to leave my couch.

I still have active thyroid cancer cells, but I hate dealing with the radioactive iodine so much that this year I've decided to simply not continue treatment. I would rather die of cancer than continue doing radioactive iodine treatment. If I had known then what I know now, I would never have agreed to have my thyroid removed/destroyed.
posted by xyzzy at 11:33 AM on August 25, 2005

A quick addendum: I do have 3 family members with various thyroid problems who've managed rather well on synthroid/levothyroxine. They are all overweight and have some energy problems, but they definitely don't suffer the way I do with this.
posted by xyzzy at 11:46 AM on August 25, 2005

I have also been recently diagnosed with Graves disease, and I have to say you people are scaring the shit out of me. Oh dear.
posted by redfoxtail at 11:51 AM on August 25, 2005

Once a year I have to wean off of my synthroid medication in order to undergo radioactive iodine treatment, and this process takes six weeks to recover from.

xyzzy: have you & your doctor discussed if it might be possible for you to use Thyrogen instead of withdrawing from synthroid to raise your TSH for the scan? I had to go thru synthroid withdrawal annually for the first 3 years I was in remission for the same reason, but have only used Thyrogen since then (and it's now every other year). It makes such an amazing difference -- instead of 2 months of abject misery, it's just 2 or 3 days of very mild inconvenience. Please consider it, rather than abandoning treatment -- my doctor says the synthroid withdrawal process is increasingly considered out-of-date for most thyroid cancer patients once they're in remission.
posted by scody at 11:54 AM on August 25, 2005

Thank you, thank you, thank you. You all provided great answers and lots to think about. I'm really reluctant to go the RI-route at this point, so hopefully Tapazole will work.

And to all of you who are still going through this treatment, I wish you the best of luck. I know it's a long process, with side-effects and downfalls at each corner.

Perhaps we should start a MeFi thryoid mini-listserv, so that we can ask each other questions as we go. Email me if that would be of interest to any of you.
posted by barnone at 11:55 AM on August 25, 2005

Hi scody :) Thanks so much for mentioning Thyrogen, both for my benefit and barnone's; I really do appreciate the suggestion. I did discuss it with my doctor last year, but she nixed it because I am not yet in remission. I would look for second opinions, but I have other issues (financial, transportation, insurance) that prevent me from easily getting medical treatment. I only just recently got out from underneath the financial obligations from my surgery, so I will probably revisit this issue at a later time.

Good luck to you, barnone.
posted by xyzzy at 12:08 PM on August 25, 2005

Just a note: The dose in radioactive iodine varies greatly. I see someone here said they had to be isolated for a week. Mine was 24 hours ONLY. In fact, my doctor told me I could really go back to work THAT DAY unless my job involved a lot of baby-hugging or something, but I chose not to.

So to the newly diagnosed, experiences can vary so, so widely that you need to take anything said here with a grain or two of salt, including my extreme no-symptoms experience and some of the harsher experiences.
posted by GaelFC at 12:44 PM on August 25, 2005

Diagnosed with Graves ten years ago, 25 yo male at the time. Still a male mind you, regardless if you had to pick one disease to get, it would be Graves. Radioactive Iodine, then synthroid forever. Big Deal. From my experience, you have nothing to worry about.
posted by Keith Talent at 2:35 PM on August 25, 2005

Based on my experiences with patients, you're about to feel a whole heck of a lot better. The hard part is usually making the diagnosis.

Good luck!
posted by ikkyu2 at 3:08 PM on August 25, 2005

vacapinta, I sent you an email.

Thanks again everyone. Grain of salt and lots of info taken.
posted by barnone at 3:52 PM on August 25, 2005

I had Graves 20 years ago (at age 14), had the iodine, and now take Synthroid. As ikkyu2 says, figuring out what the hell was happening to me was the hard part - the rest of it has been fine and I'd do it again the same way. Feel free to email me as well if you've got questions.
posted by judith at 7:33 PM on August 25, 2005

Jumping in late here, but I resisted having the radioactive iodine treatment for 2 years after being diagnosed with Graves Disease. In retrospect, that was a huge mistake. Finding the right dose of tapazole was a bear (at three points, there were 2 weeks where I had blood drawn for tests every day ). Living in a dorm with mood swings from hell and the attention span of a Jack Russell Terrier on meth was non-optimal.

I finally agreed to a good nuking (and worked out the logistics of getting my own radioactive toilet in my dorm). Easiest medical procedure I've been through - put on a lead apron, sip water through a straw. Unfortunately, the first time didn't do much.

Second time, I had an allergic reaction to the iodine. I'm still not sure what all was going on, because I was hysterical for much of it. This involved 3 days in hospital followed by a few weeks of meds I *had* to take every 6 hours, even when sleeping.

Got put on synthroid after that, did okish. Found out a few years later I do better on armour thyroid, which is what I've been taking the past 10 years or so. Must get my thyroid hormone levels checked every year. Gained weight afterwards, need more sleep now. I can also concentrate a bit longer and the mood swings are gone (well, except PMS, but that is another issue).

Bottom line, I feel better taking armour thyroid every day than I did taking tapazole, and my hormone levels are more stable. Emotionally, getting used to the idea that I needed a pill every day, or I was going to, at best, be in excruciating pain, was unpleasant, and I still don't like to think about it much.
posted by QIbHom at 9:30 PM on September 2, 2005