Thyroid advice badly needed

January 21, 2009 3:38 PM

I'm pretty sure I have thyroid issues. I see the doctor in three weeks. What can I do until then and how do I know whether I need to see someone sooner?

I strongly suspect that I have thyroid problems, particularly a hyperactive thyroid. I realize that YANAD/YANMD, and I've already made an appointment with the doctor, but it won't be for another three weeks. In the meantime, I need to know a few things:

o What else could this be, if not thyroid, that I need to look into?
o How serious is my condition at this point, based on the evidence available? Should I be pushing to see someone sooner? Should I go to the ER?
o What can I do in the meantime to manage my condition through more conventional means?

I also wouldn't mind hearing people's opinions on opting for RIT (radioactive iodine treatment) and replacement vs. anti-thyroid meds, so that I can be prepared with a decision if these are indeed my options.

I'm male and 34 years old if that helps.

First, the reasons I think I have thyroid issues. Please jump in if you think I might be wrong with the self-diagnosis, but I've done a lot of research on this and am all but convinced that this is hyperthyroidism.

Most of these symptoms started around March through June of last year. There have been a LOT of changes in my life starting around that time, and some of them have been "explaining away" or masking my symptoms. At the very least I've been so busy that I've been ignoring these things until I started noticing the pattern. I'll try to provide as much detail as possible.

Family history:
My mother has Grave's disease with VERY bad eye and skin involvement, my brother has Hashimoto's, and at least one other member of the family has had issues with severe thyroid problems in the past. When this was discovered, my family urged me to get a thyroid panel, but I kept putting it off.

Unexplained Weight Loss:
Growing up I went back-and-forth a few times from very skinny to very fat. This was not due to changes on my part AFAIK, and I always assumed that hormonal changes and growth spurts were responsible for the changes. As an adult I've had my natural "set point" change once on me - I was at 180, diet and exercise got that to 160, and then I relaxed that and stayed at ~200 for several years. This for me was overweight but not in the obese category. Since June I've lost about 40 pounds without even trying, and am now closer to my ideal weight. I had made a few diet and activity level changes, but nothing that seems to match up in time or severity with that kind of dramatic weight loss. As the weight loss continues, I've started trying to eat enough to maintain the same weight and don't feel like I can keep up no matter how much I eat. I should mention that my appetite has been a little smaller than before, but I believe this to be related to the behavioral changes, and I still have quite a bit of appetite, even ravenous at times.

Hair/Scalp Issues
I have very curly hair, and used a lot of products in my hair for several years. Early last year, I started noticing what I thought at first was very bad dandruff. I used the typical shampoos and remedies to try and correct the problem, but nothing seemed to work. It seemed to be confined to one "patch" of skin on the right side, and the scalp began flaking in bigger pieces as it progressed. I had a few spots where skin had partially flaked off and formed "flaps" of skin with raw skin underneath. There have also been periods where my scalp turned red along my hairline in front. I thought this might be a bad reaction to one of the hair products I was using, but after I discontinued all of them and went back to the stuff I knew wasn't a problem, the scalp issues persisted. They would "flare up" for a while and then go away. The only thing that may have helped, unless it was just coincidental timing, was Dawn dish soap. After doing a little more research, I figured it was either seborrheic dermatitis or eczema. It wasn't until just recently that I connected this to thyroid.

My hair has always been full but also fine, dry, and brittle. I have started to notice what might be more than my normal hair loss, but this might only be due to external changes - I've been growing it out longer, styling it differently, and using little to no styling products where before I used them heavily.

Other, more vague symptoms (possible, but not as certain)
I've been having pressure and dull aching in my chest near the sternum coming and going since November. It's very slight, and I was painting and ripping out very moldy tiled shower walls around the time this has been going on, but now that I have all the "contaminated" products removed from the house I still feel it. This one's harder to classify, because my wife and roommate have both been feeling the same pains. It may not be related at all, but may also indicate secondary problems that can result from untreated hyperthyroidism. This is the one that scares me the most and makes me wonder whether I can wait the extra three weeks to see the doctor.

My heartbeat and blood pressure, by the way, are good. Heart rate is around 60-80 resting, and BP around 120/80.

Temperature sensitivity: Hard to say - I was going back and forth between two different climates quite often from October 2007 to September 2008, and Florida plays tricks with your temperature sense. I seem to tolerate heat well, but I've never dealt well with cold.

Nervousness and muscle weakness: I've heard these tend to "sneak up" on people. My activity level is feast or famine, but mostly VERY low right now except for the occasional home improvement project. My stress level is also VERY high. I plan on changing both of those soon, but for now I can't tell if I've grown weaker or more nervous without external factors playing a part.

Skin changes: Not that I've noticed. Then again I don't normally pay much attention to these things and everything dries out during winter here, so again it's hard to say.

Tremors / trembling hands: I can hold my hand out straight and see very little movement, but I tried the "paper test" I found online (put out your hand palm down, place a sheet of paper to rest on the back of your hand, and look for trembling at the edges of the paper). I see some movement in the paper, but I thought that small tremors were somewhat normal. At least they seemed to be for me.

Sleep issues: As always, I get far too little and then sleep myself out when I can. When I lie down, I'm out almost as soon as my head hits the pillow. Sometimes I find myself barely able to keep my eyes open a few hours before my normal bedtime, but with my serious sleep debt I think that's a more likely cause.

Help!
I am working on taking in more calories to keep my weight stable, upping the activity level gradually, and cutting down on smoking (currently slightly over 1 pack/day for 20 years) with an eye toward quitting. I'm also working on getting more sleep and really paying attention to my body so that I can present my symptoms to the doctor in a better way. I've heard that 3:1 preparations of sodium and calcium, as well as copper, may help manage the symptoms. I've also heard that cutting back on iodine helps with hyperthyroidism but hurts in the case of hypo-. I also know that if I'm wrong in my guess I could be doing more harm than good but I think that reducing meat and salt may be a step in the right direction, which I will watch carefully.

Also as I said above, I'd be interested in finding out the hive mind's thoughts concerning the treatment options if I'm right about a thyroid issue. Is this an individual case-by-case decision, and what should I know before making a choice?

Thanks in advance for any help, support, or advice you can give me. Whether I'm being rational or not this is scaring me pretty badly right now.

posted by tkolstee to health & fitness (11 comments total)

You don't need to go to the ER. Thyroids work very slowly, and treatment takes months. They're not going to throw you into RAI tomorrow because you appear to be hyperthyroid. Wait the three weeks and see your doctor.

If you really want to be proactive, you can cut iodine out of your diet. Iodine is what your thyroid uses to make thyroid hormone. Iodine is in almost everything, so it's a bit tricky. If you have a thyroid problem, though, you'd want your tests to come out exactly accurate.

From personal experience, I'd avoid RAI if possible. You'd possibly just end up being hypothryoid instead, which is absolutely no fun at all, and RAI comes with a whole host of other possible side effects like joint problems, blocked salivary glands, and even a higher risk for cancer (possibly).

Take a deep breath, relax, take care of yourself, and talk to your doctor.
posted by Hildegarde at 4:25 PM on January 21, 2009

[As always, IANAD, etc.]

I've had thyroid problems for years (Hashimoto's disease, which is an autoimmune disease of the thyroid, then thyroid cancer; I had two surgeries, then radioactive iodine treatment, and now take thyroid replacement hormone on a daily basis). I also have a variety of other slightly kooky/rare conditions, and thyroid problems (as well as autoimmune disorders in general) run strongly in my family.

The number one thing I'd say is just to take a deep breath... and tell yourself that three weeks is not very long. During those three weeks, keep in mind that if you do indeed have a thyroid disorder: 1) generally speaking, thyroid disorders are relatively simple to diagnose and manage (even though it can sometimes take time and some trial and error to get medication dosages exactly right), and 2) waiting three weeks isn't going to make an appreciable difference.

That's not to say you may not continue to feel your symptoms, but rather that those symptoms are most likely NOT going to be indicative of a disorder getting appreciably worse. Or, to put it another way, even if you do have Grave's disease, Hashimoto's disease, or even thyroid cancer, getting the diagnostic process under way in three weeks (as opposed to three days or a week) is unlikely to cause you any lasting harm.

Based on what you've written here, I think going to the ER is unlikely to help you learn much beyond how surprisingly expensive a trip to the ER can be.

I know it's really hard with the internet at your fingertips, but believe me (I speak from experience here) when I say you will do yourself a big favor if you stop trying to put the cart before the horse. It's vital to be a well-informed patient and an active participant in your own medical care. But I believe you'll be more productive on that score if you can find a way to manage your own anxiety over the next few weeks and wait to see what your doctor tells you.

Thyroid conditions are generally rarer in men than women, so it might be important to make sure your doctor doesn't dismiss your concerns (e.g., if your doc says something like "don't worry, only women get thyroid disease"). Also, as a general piece of advice, if you get referred to an endocrinologist, try to make sure he/she is an endo who has experience with thyroid disease. Some endos are primarily specialists in diabetes, and can miss more subtle or ambiguous thyroid test results or symptoms.

It's also entirely possible, of course, that you don't in fact have a thyroid problem at all. There are other conditions that can cause weight loss (which is, generally speaking, associated with being hyper- rather than hypothyroid anyway), tremors, and scalp irritation.

In them meantime, for your scalp problems, try the extra-strength Neutragena coal tar shampoo -- it's the only thing that works for me when my dermatitis flares up.

Also, there is some thought that eating high levels of soy may be related to thyroid problems, though there really isn't a medical consensus yet. But if you eat soy daily it probably wouldn't hurt to cut back.

Good luck and be gentle to yourself while you wait. (I know it's frustrating.)
posted by scody at 4:26 PM on January 21, 2009 [1 favorite]

Thyroid cancer club! Paging nickyskye!

If it makes you feel any better, tkolstee, I was first diagnosed with thyroid problems 17 years before I had surgery for thyroid cancer. My surgeon is pretty sure it was cancer the whole time. Even from initial biopsy to surgery was roughly 9 months. 3 weeks is okay. It's pretty fast.

The hardest part of this is actually the anxiety that comes with the waiting and worrying. Consider finding ways to cope with the not-knowing. (Hahahaha yeah that's so easy to do.) Go get a massage, spend time with loved ones, express your concerns in healthy ways. Get artistic! Or go have a nice drink.

Let us know how things go.
posted by Hildegarde at 4:37 PM on January 21, 2009

From personal experience, I'd avoid RAI if possible. You'd possibly just end up being hypothryoid instead, which is absolutely no fun at all, and RAI comes with a whole host of other possible side effects like joint problems, blocked salivary glands, and even a higher risk for cancer (possibly).

Ignore this paragraph.

RAI would be followed by replacement thyroid meds, so you're not going to suffer from hypothyroidism. RAI is usually recommended because anti-thyroid meds incur more serious side effects than thyroid replacement meds. Also in my experience, the anti-thyroid meds do not lead to a stable situation - you will go back and forth to hyper/hypo, whereas the replacement meds do not.
posted by meowzilla at 5:00 PM on January 21, 2009

If it makes you feel any better, tkolstee, I was first diagnosed with thyroid problems 17 years before I had surgery for thyroid cancer

Yep, my story is similar, though the time lag was not nearly as dramatic! I was diagnosed with thyroid problems in the early '90s (after I'm sure I had them for at least a few years, if not longer). My cancer diagnosis came about 5 or 6 years later, and the docs figured I'd had it for years at that point as well.

I wouldn't personally try to cut your iodine at this point, mainly because you want your bloodwork to be as accurate a reflection of your current medical state as possible. There may indeed be reasons for you to restrict iodine intake (though you shouldn't cut it out entirely -- which is pretty difficult to do with a Western diet, anyway), but again, I'd wait to see what your doctor has to say first.

And just don't worry about RAI at this point, either. You have to get a diagnosis first before you can meaningfully assess treatment options.
posted by scody at 5:07 PM on January 21, 2009

I guess everyone has different experiences, meowzilla. I wish I could have skipped the RAI, personally.
posted by Hildegarde at 5:11 PM on January 21, 2009

(sorry, I realized that part of my first answer is based on momentarily thinking you were suspecting hypothyroidism, not hyperthyroidism. But my main point stands: the very best thing you can do for the next three weeks is to find ways to make yourself relax.)
posted by scody at 5:23 PM on January 21, 2009

No thyroid experience here, but a lot of experience with "HOLY SHIT WHAT BROKE" medical anxiety.

Stop Googling, don't obsess, take a few deep breaths, and print out your post, tuck it in a folder, and bring it to the doc with you in three weeks. You've illuminated your condition and your concerns pretty precisely, and that will be a big help. It'll also be a big help if you don't drive up your blood pressure and upset your sleep in the meantime.
posted by fairytale of los angeles at 5:54 PM on January 21, 2009

I'm going to reiterate that thyroid issues are generally really slow moving, and three weeks will not make any difference.

Beyond that, have you considered psoriasis as a possibility for your scalp issues? Sounds exactly like it.
posted by Edubya at 8:28 PM on January 21, 2009

Mr. Adams' only "symptom" was a sudden weight loss - 14 lbs. in three weeks. We just charged it off to his new job, which involved more physical activity than his previous one. However, he was with me at my rheumatologist's appointment one day, and my doctor said to him, "Hold out your hand." It had a slight tremor. Mr. Adams has always had large eyes, it never occurred to me that they were the bulgy-type eyes symptomatic of thyroid trouble. These symptoms plus the weight loss prompted my doctor to order blood work, and a few weeks later we were getting Mr. A prepped for his RAI. All went well, he now takes Synthroid every day, and is none the worse for his adventures. Best of luck to you!
posted by Oriole Adams at 9:33 PM on January 21, 2009

I had Grave's disease. It went undiagnosed for years. It took about 7 years before I finally decided to consult a dermatologist about my hair loss, and by that time I had developed many other symptoms like terrible insomnia, pebbly skin, hand tremors, high blood pressure, heart arrhythmia. My GP had never bothered to follow up on any of these symptoms as they appeared-- just suggested I cut down on my caffeine consumption. Once I was treated, all the problems corrected themselves-- so aside from my hair being a little thinner, I suffered no lasting damage.

I had the radioactive cocktail because I was told my case was too severe. Unfortunately for the next 10 years my medical insurance coverage was a bit spotty and sometimes it was a real hardship to find the money for blood work-up and office exam every six months in order to get my prescription refilled, so I often wished I had been given the chance to try the anti-thyroid medication. However, it sounds like you might be in the early stages. Try not to worry too much, 3 weeks really isn't that long.
posted by Secret Life of Gravy at 5:12 PM on January 22, 2009