If it's not my thyroid, what else might it be?

June 3, 2008 10:58 AM

I am looking for suggestions as to what medical problems may look like, act like, and walk like thyroid problems, but aren't. Specifically hypothyroidism.

Many times in my life, I have had my thyroid tested. The symptoms that caused the doctor to order the tests ranged from extreme fatigue [which has lasted years] to the unexplained hoarseness I am experiencing right now. The tests, which usually only include TSH and T4 tests, always come up fine. The doctor doesn't fix the problem, drops it, and I don't get better. Then I will eventually move somewhere else, something will come up that prompts a doctor visit, and the cycle will continue.

It wasn't until the most recent episode that I started looking at hypothyroidism symptoms and thought, "Wow, it really does seem like I have this." I am going in for another blood lab on Wednesday, with a brand new doctor, and I'd like to figure this out.

If it's not hypothyroidism, what else could it be? This way, I can ask them to test for as many possibilities at once as possible, minimizing my out of pocket expenses and blood loss.

My biggest symptoms right now:

--fatigue
--hoarseness for a month now with some difficulty swallowing [no throat infection, doctor checked for that last time]
--extreme sensitivity to cold
--sudden dry skin that has lasted a month
--increase in hair loss
-brain fog

Not the only ones, but the worst ones this time around. I suppose it's possible there's nothing wrong, but I'd like to know for sure.

Thanks in advance.

posted by starbaby to health (33 comments total)

Chronic fatigue syndrome. Speaking from experience - I was misdiagnosed with hypothyroidism for a few months. Didn't have throat problems, my hair is fine, and my skin problems are different, just FYI.
posted by bettafish at 11:10 AM on June 3

Check for allergies?
posted by lubujackson at 11:10 AM on June 3

Scroll down here for a list of differential diagnoses. (I found this, and a whole lot more, by googling hypothyroidism differential diagnosis.)

IANAD, but it sure sounds like your thyroid is out of whack. It can be difficult to diagnose, as you are discovering. Have you been seeing an endocrinologist, or your regular PCP?
posted by rtha at 11:13 AM on June 3

don't let your doctor drop it. if your insurance plan allows it, go straight to an endocrinologist rather than a general practitioner. or ask your doctor for a referral.

in the meantime, collect all of your medical records from all of your doctors (you usually just have to call them and they'll send them to you) and make a list of all your symptoms, when you noticed them, when they went away, what was more prominent, what changed, what was always the same. then give it all to your endocrinologist.
posted by thinkingwoman at 11:17 AM on June 3

The symptoms you've listed are, unfortunately, very general. You could have a thyroid problem, you could have 50 other things. It could (and I hesitate to say this since it's really obnoxious to hear when you know that you're sick) also be psychological. I know firsthand how much it sucks when doctors don't pursue a problem, though, and the people around you see that you're sick so much and assume that's just how you are, so keep going to doctors (not just thyroid doctors, go get a complete physical by your GP, ask to be referred to a ENT, an endocrinologist, and a shrink) until you are satisfied with a diagnosis/treatment plan and you can finally start to feel better. That sentence was too long.

That all said, I've known a good number of people who have had thyroid problems, both hypo- and hyper-, as well as some people with a family history of thyroid problems, who have been poked from here to tomorrow trying to find a reason for X general and minor symptom, thinking it was a thyroid problem. One thing that all of them (the people with an actual problem) had in common? Weight gain or loss. Almost invariably. Two women I knew would shoot up or down in weight, 40lbs or so, at the drop of a hat. Another was very overweight but was reasonably active and ate well. Others were so skinny they looked like they could be knocked over with a good gust of air, despite never being able to gain weight. (The two with hyperthyroidism also have bulging eyes.) It was the sudden weight gains or losses that lead to their diagnoses. Not knowing anything about the condition other than through my relationships with these ladies, I would have to say that your weight might be the deciding factor in whatever diagnosis or treatment you might receive, unless you're really pushy with the doctors.

But yeah, go see a lot of different professionals (not just endocrinologists). It might help to approach (all of them, even the minor ones) your symptoms as just symptoms, rather than "symtoms of a thyroid problem."
posted by phunniemee at 11:19 AM on June 3

not just thyroid doctors
I mean the people currently seeing you, whoever they may be
posted by phunniemee at 11:21 AM on June 3

What are your actual TSH levels?

There is some disagreement over what constitutes 'fine'.

Read this for some information and links.
posted by mumbleitaliano at 11:24 AM on June 3 [1 favorite]

I was sure I had hypothyroidism, and had all the symptoms you described, including gaining 17 lbs. in a year (I eat 1400 cals./day and work out 2 hours a day, 6 days a week, so this was very odd for me). My doctor tested my TSH levels and they were at 4.6. He said that was normal. So I did a little digging about subclinical hypothyroidism and went to an endocrinologist, who did really thorough tests, and agreed with me.

Since I got put on levoxyl, I've stopped being cold, started losing weight (after two months on the meds I've lost 6 lbs.) and my energy's back up.

Other things, too... my sex drive got stronger, I started sweating more at the gym (I had stopped sweating, almost! weird, huh?) and my brain got sharper, too. I stopped misplacing things and forgetting what I was doing. My voice got normal again; I didn't realize it was bad until it was better.

One of the thorough tests showed I had LOW uptake of T3 and HIGH uptake of T4; also, elevated cholesterol (208). These things (low T3 and high T4 causes the body not to metabolize cholesterol properly, especially in women) are classic signs of subclinical hypothyroidism.

I urge you to have extensive tests done by a specialist, if you can. He was at first hesitant to give me the meds, agreed to let me try them for 30 days, and when my symptoms abated, agreed to let me stay on them. I've never been happier. My friends thought I was going mental (nobody believed me, not even my doctor), but you can't go wrong with having a more thorough test by a specialist. General practitioners may not know enough to treat you accurately.

Other things that cause fatigue long-term: Lupus, Hashimoto's disease (a variant of hypothyroidism where your body vacillates between being normal, and attacking your thyroid as though it's a virus), and Epstein-Barr.
posted by Unicorn on the cob at 11:28 AM on June 3 [2 favorites]

Have you had a sonogram on your thyroid? I have some of the same symptoms you describe... brain fog and fatigue, dry skin, and trouble swallowing (going back 9 months to a year, some even longer). I was chalking the first two up to a mild depression. Then I noticed one side of my thyroid was swollen.

Go to my doc... the blood tests come back normal (T3, T4, TSH). Get a sonogram, and find that I have a 5 cm tumor, which has probably been growing for 3-4 years. I have a biopsy next week. If it's benign, I just lose that lobe. If it's cancer, I'll have a full thyroidectemy.

Maybe you have a small nodule that isn't detectable physically yet?
posted by kimdog at 11:34 AM on June 3

Let me preface this by saying that I believe I was an extremely unusual case and that I have never heard of anyone in a similar situation, but since you ask, and since it happened to me, I will tell you: I had all of your symptoms for several years, and numerous thyroid tests that all came back normal. Then I was diagnosed with thyroid cancer, had my thyroid totally removed, went on thyroid hormone replacement, and all of my symptoms resolved. My hair has grown in thick and shiny, my cracked heels have healed, I have a normal amount of energy, the brain fog has cleared, and we keep the thermostat a full ten degrees cooler now.

It is not normal as far as I know for thyroid cancer to cause symptoms of hypothyroidism. I think perhaps I had subclinical hypothyroidism that just happened to get cleared up when I started taking levothyroxine (thyroid hormone) after my surgery. Or, perhaps the cancer was somehow causing the symptoms. If you are concerned, you could ask for a thyroid ultrasound to rule out cancer although I don't know if they would give it to you.
posted by HotToddy at 11:40 AM on June 3

Answers:

I have never seen an endocrinologist. I have only seen my regular doctor.

I have never had an allergy test, so that might be something to look into, as well as chronic fatigue.

I did just list my symptoms to my doctor, as I have done every time. This time I actually went to the doctor for a UTI as well as menstrual problems, but I told her *everything* just in case.

As far as my weight, it gets tricky. I was anorexic in high school, which was then followed by massive weight gain. I always assumed that the anorexia messed up my metabolism. I have since [seven years or so] been almost completely unable to lose weight, which I always assumed was due to my lack of energy making it nearly impossible to get enough exercise. At this point, I am on a 1400-calorie a day diet. This allowed me to lose almost 20 pounds, most of which was probably water weight, but I am unable to lose more. Every time I do, it comes back [3-pounds-in-one-day-comes-back]. If I have had hypothyroidism for years, the initial weight gain could have been caused by it; but because I was able to lose 20 pounds to begin with, I would think that goes against hypothyroidism.

As far as my levels:

TSH: 1.798
T4: 9.4

HotToddy and kimdog: How did this feel? I woke up one morning and felt like someone punched me in the throat. It doesn't hurt inside, like a sore throat, but it's not on the outside like a skin problem either. Friday night I had an episode where it felt like one quarter of my throat was blocked or swollen or something, and I had trouble swallowing. Any of this sound familiar?

And, finally,

It could (and I hesitate to say this since it's really obnoxious to hear when you know that you're sick) also be psychological.

Most of the time I work under the assumption that I'm just a plus size girl who's tired a lot or not trying hard enough. It's not until a doctor or a friend or a parent notices a weird symptom like severe facial flushing that I get curious or scared. If it's all in my head, it's all in my head.
posted by starbaby at 11:48 AM on June 3

What is your basal temp on waking? Go to the drugstore and get a basal thermometer. When you open your eyes in the morning, before you even sit up, grab it and take your temp. Do this daily for a week or so. The actual temp that you need to be under to be considered someone with a thyroid issue is contested, but having that info in hand when you see a doc could be helpful. Some places cite below 97.7, some below 97.1, most in that range, but I'd say if you are consistently below 97.3 that is definitely a flag.
posted by 8dot3 at 12:26 PM on June 3

I should also mention that the levels I gave are from February 2007; I am being tested tomorrow morning, again, but I want to add anything else to the tests that might cause these symptoms, since it never seems to show up as my thyroid.
posted by starbaby at 12:29 PM on June 3

8dot3--that's really strange. I have always had a low normal range, usually it's something like 97.7. I always thought I just had a low body temperature. I haven't taken my temperature in months, though, since I always get red and flushed when I have a fever. Maybe I should try that. Thanks.
posted by starbaby at 12:31 PM on June 3

There's a pretty good list of recommended labwork here.
posted by vers at 12:40 PM on June 3

An earlier poster said your symptoms might be psychological. A better term might be psychsomatic. When something is psychosomatic, your physical symptoms are absolutely real, but they've been aggravated (or sometimes initiated, though I doubt it in your case) by stress or other emotional upheavals.

I don't think that person meant to dismiss you at all, but that's the association the word pscyhological has. Like when someone tells you, "It's all in your head." I simply happen to be hypersensitive to that kind of dismissal. Probably wouldn't even have noticed it otherwise.

I have many of your symptoms, and I'm hypothyroidal. Good luck!
posted by frosty_hut at 12:50 PM on June 3

It's absolutely true that you can have TSH around 2 and be functionally hypothyroid. You might be able to talk your doc into trying a course of levothyroxine. The suspected subclinical hypothyroid, the persistent cough, and a painful goiter are possibly enough to justify a fine needle biopsy.

A history on anorexia will make levothyroxine a little trickier, since it's not unheard of for bulimics to seek it as a weight loss drug. You could try to get the long history of this documented complaint paper trail from your past docs so that you can prove that you're not seeking.
posted by a robot made out of meat at 12:53 PM on June 3

Talk aobut hypothyroid fog! I meant:

psychosomatic
psychological
posted by frosty_hut at 12:58 PM on June 3

Seconding those who mention subclinical hypothyroid as a possibility. I know from experience that it is quite possible to have "normal levels" on the standard tests and still actually really need thyroid hormone replacement to get to a point where your individual body feels "normal."

In addition, some hypothyroid patients feel better taking some T3 in addition to and/or instead of the traditional synthetic T4 treatment. (I am one of them and would be happy to tell you more about it- just MeMail me.)

I wish you the best!
posted by oblique red at 1:20 PM on June 3 [1 favorite]

HotToddy and kimdog: How did this feel? I woke up one morning and felt like someone punched me in the throat. It doesn't hurt inside, like a sore throat, but it's not on the outside like a skin problem either. Friday night I had an episode where it felt like one quarter of my throat was blocked or swollen or something, and I had trouble swallowing. Any of this sound familiar?

Well, my tumors (I actually had multiple ones on both lobes) were only diagnosed incidentally--I had gone to an endocrinologist for another reason and as part of her exam she palpated my thyroid and felt a lump. Once it was pointed out to me, it was obvious that there was a big lump there, but it sat just under my clavicle so I never would have noticed it on my own. For a do-it-yourself test, you can take a sip of water and watch your neck as you swallow. If you see a lump travel up and then down (not your Adam's apple, a different lump), that's a big sign.

I also had a very hoarse voice for months before the diagnosis. According to my doctors, hoarseness is not from thyroid cancer unless it affects your vocal chords. My cancer didn't affect my vocal chords, but I did have hoarseness. Once the thyroid was gone, so was the hoarseness. My conclusion: Doctors don't know everything.

Don't freak out about the idea of it being cancer--thyroid cancer is not like other cancers, it has a 98% survival rate. But do get it checked out.
posted by HotToddy at 1:21 PM on June 3

I have thyroid problems, and had your symptoms, but there were other symptoms that were more pronounced, as well.

My hair would fall out, in the shower or just running my hands through it, several strands at a time, and it was very dry.

So--o-o tired. Not just lacking energy, but dozing off if I so much as read a few pages in a book.

My skin was really dry. Heels so cracked the kids would ask me what was wrong with my feet, putting on lotion several times a day just to keep from looking like I had scraped my knees, shins, elbows, forearms, etc.

Weight gain, and not from over-indulging. I'd maintained my weight for years after having my kids, and suddenly I gained 20 pounds in a few weeks. So I pumped up the exercise, tuned down the calories, and I kept gaining, just at a slower rate. Just maintaining my weight was a challenge until medication. Now I can actually lose weight again if I'm sensible, hooray!

Libido is a big deal to me, and my sex drive just tanked. I'm on anti-depressants, and at first thought that was the whole problem, but taking thyroid medication really improved the situation.

Best advice in the thread: go to an endocrinologist, AND keep track of all your test results!
posted by misha at 1:54 PM on June 3

misha--

I just moved to a house with no shower [!] and I started noticing my hair loss because there is a shower drain. I just don't know how much is too much. I need to clean my shower drain every two days due to hair loss. My hair is 2.5 feet long, though. Is that too much? I just thought a lot of hair loss was normal in people with long hair. My heels have always been hard and dry and cracked, but I thought it was a southern thing because I go barefoot more often than other people. I have noticed recently that my face looks like it's peeling in several places--this one is brand new!
posted by starbaby at 2:00 PM on June 3

My doctor started me on thyroid supplement, even though the test said it was in the normal range, and it has tested in the normal range for years. But he said "Let's try it,; the test is influenced by many factors." Yay for him, and me, too. I have more energy than I have had in many years, and have therefore lost weight. I'm not as cold all the time. It's not expensive medication, and apparently has few side effects, so I'm thankful that my doctor prescribed it for me.
posted by theora55 at 2:32 PM on June 3

I'm Southern, too, but if your heels start bleeding because they are so cracked, and your lips, too, that's a good sign there's something going on.

I don't know if your hair loss is normal because I don't know if it's always been coming out at that rate. I really noticed the difference in mine.
posted by misha at 2:32 PM on June 3

HotToddy and kimdog: How did this feel? My symptoms were very gradual. In fact, I didn't really think that my trouble with swallowing was the clinical symptom "trouble with swallowing". I could swallow just fine... except food would get stuck in my throat occasionally, then more frequently, and now it's on a daily basis. I do have occasional hoarseness too. But there was no sudden onset of symptoms.

And like hot toddy, I was pretty shocked when I noticed the lump on my neck. It's not something noticeable in the mirror, but when I actually felt it and then prodded, I was amazed to find something the size of a small egg on one side. This coincided with the first severe spring allergies I ever had, and I had been coping with intense post nasal drip with sore throat, sinus pressure, etc. I though it might be related to that. Actually, an ENT was the first doc I saw, who quickly told me to get it checked with my regular doc. She ran all the baseline tests, and then sent me off to the endocrinologist.

The worst part of this has been the waiting between tests. It took me three weeks to get a sonogram, and then another three weeks for a biopsy. I've resigned myself to the fact I'm having surgery. Now I just want it over with.
posted by kimdog at 4:43 PM on June 3

Starbaby, push your regular doc to refer you to an endocrinologist.

Is there a history of this in your family?
posted by rtha at 5:20 PM on June 3

Don't assume your symptoms are all related to the same problem. Trying to find something that fits everything that you deem unwell will make you a great episode of House, but have little to do with the real world. Have you had an ultrasound on your thyroid? I had many of those symptoms-- blood levels kept coming up fine, but they eventually discovered a benign tumor on my thyroid through ultrasound. After surgical removal, the hoarseness, fatigue, sleep problems and temperature sensitivity went away.
posted by nax at 6:10 PM on June 3

Like others have said, your symptoms are very generic and I think it's kind of tough to say "maybe it's psychosomatic" when we have no idea whether there is an actual problem or not. Those symptoms could fit any number of conditions but my first thought after reading the initial post was "I wonder if she's underweight". Your description is consistent with someone who is chronically underweight, which would be the simplest explanation. It sounds like from follow-up posts that you are currently overweight, though? It's hard to tell from your response. If your weight is low, though, it's quite possible that this is what's causing your symptoms.
posted by btkuhn at 9:27 PM on June 3

It's absolutely true that you can have TSH around 2 and be functionally hypothyroid.

This is highly, highly unlikely.

So-called subclinical hypothyroidism and the range of normal TSH has long been debated, but virtually every expert you might ever come across will tell you that the debate is generally over patients with TSH levels between 2ish and 5ish. Unicorn on the cobb's storry (with a TSH of 4.6) is a classic example. But while high-normal levels are debated, low-normal levels (like the OP's) are highly unlikely to reflect subclinical hypothyroid no matter how obsessed the folks on AskMe are about this subject. The lower your TSH, the better the negative predictive value of this test becomes with respect to hypothyroidism, and at levels below 2, functional hypothyroidism would be an extreme statistical aberration. I'm not saying it's impossible. What I'm saying is it would be downright foolish not to pursue other causes (of which there are many) of these constitutional symptoms as continued perseveration on the thyroid issue may lead to a delay in the diagnosis of another problem that may exist. It wouldn't hurt to get an experienced endocrinologist's opinion on this, and other tests like antibodies associated with thyroid disease may be of some help, but I'd urge you to be persistent with your primary physician regarding other possibilities.
posted by drpynchon at 12:18 AM on June 4

drpynchon's right. I know there's a syndrome of pituitary resistance to thyroid hormone (body tissues use thyroid just fine; the brain doesn't see it and screams for more), and was thinking of that reversed (brain sees it, declares t4 levels ok, body tissues don't use it right). Now that I looked I don't think that such an entity really exists, and a rare setup like that is way less likely that the many other things that give you fatigue and skin problems.

Still, problems swallowing, persistent hoarseness, and pain in the neck are bad. Hope those don't get blown off.
posted by a robot made out of meat at 7:15 AM on June 4

As far as I know, there is no history of thyroid problems in my family. There is a history of cancer, and one side of my family is all very petite and thin, while the other side tends to be too heavy. But nothing diagnosed that I know of.

I got blood drawn this morning, so we'll see how that goes. I might talk to her about referring me to an endocrinologist when I get my results.

If anyone knows the answer to this, I would appreciate it: Is it possible to have a tumor/nodule/anything that grows toward the throat and NOT outward? It would make it hard to swallow but not be easily felt by the doctor (she checked me with her hands for lumps and bumps last week, but my throat problems have gotten significantly worse since then).
posted by starbaby at 12:20 PM on June 4

If anyone knows the answer to this, I would appreciate it: Is it possible to have a tumor/nodule/anything that grows toward the throat and NOT outward? It would make it hard to swallow but not be easily felt by the doctor (she checked me with her hands for lumps and bumps last week, but my throat problems have gotten significantly worse since then).

Yes. Definitely, yes. I've seen it first hand a number of times. In fact, since we're discussing it, I've even seen a goiter do this which is a bit unusual. Trouble swallowing is something that needs to be looked at quite substantially. What I mean by that is, unless your doctor can already give you a good reason for it, you should at least get some sort of imaging and/or direct endoscopic visualizationof the anatomy there before being satisfied with a "this is just nothing, don't worry about it"-type of response.
posted by drpynchon at 7:51 PM on June 4

My results came back completely normal, but I have developed a "thyromegaly" in the front right side of my neck. My hoarseness has gotten worse, and I have an appointment for ultrasound on Monday. So I guess it was my thyroid after all.
posted by starbaby at 7:06 AM on June 7