Friday, May 30, 2008

Fat is a symptom, not a disease, Part Two: Hypothyroidism

About five years ago, I started developing severe symptoms consistent with hypothyroidism: crushing fatigue, widespread pain, weight gain, and other issues. I'd had them to some degree for several years before that, but for the first time in my life, the symptoms were interfering with my ability to work.

My doctor at the time, we'll call him Dr. H, did blood tests, and he told me that my thyroid levels were "normal". With every other thing ruled out, and some other things ruled in, he finally concluded that I had fibromyalgia, and got me started on some medications that were supposed to help. These medications helped the pain and depression somewhat, but I was still exhausted most of the time.

A few months later, I asked him to do another thyroid test. He told me that it was a good idea, since the standards for "normal" had been changed, and that my previous test, while "normal" at the time, now was outside of that range. The phlebotomist took a few vials, and I heard back a couple of weeks later that my levels were "normal". Now, at the time, I had not done my homework. I was still not fully aware of the extent to which I had to advocate for myself with doctors. Too trusting and naive, I didn't actually get told what the numerical results of my test were, only that they were fine.

Fast forward to a year ago, when I changed my primary doctor to someone I'd met through work, a very intelligent man who was very knowledgeable about hypothyroidism and fibromyalgia. Dr. D was of the opinion that, even if the test results appear to be normal, when a patient exhibits symptoms of hypothyroidism, it may be beneficial to treat for it anyway. He said that about half of the people in such circumstances show improvement with the thyroid medication.

Additionally, my previous doctor only tested for TSH, the chemical your brain sends to your thyroid to tell it to make the thyroid hormone. Basically, if you aren't making enough thyroid hormone, the pituitary gland keeps pumping out TSH, which reaches a high level because it's the equivalent of the pituitary gland screaming at the thyroid to step up production. So a high level of TSH will show that the thyroid's not responding enough to shut up the pituitary gland. In my opinion, that's a bit like determining if someone is deaf by whether or not their spouse is screaming at them to be heard. Maybe you can draw some conclusions from it, but it doesn't necessarily mean anything if the spouse isn't shouting.

In many people, the TSH test will not show hypothyroidism; people with fibro especially seem to be harder to test because of a biochemical feedback loop (and no, I don't know where my source for this is; I had it in a newsletter or something) that results in a normal-appearing TSH level. So, to see if there's enough thyroid hormone being produced, the most accurate way is (and don't be shocked here) to test for the actual level of thyroid hormone. Now, to me, that seems kind of common-sensical, but I guess it's more expensive to do the full testing.

The long and short of it is that, once Dr. D did the full panel of tests, it showed that I was, in fact, not producing enough thyroid hormone. He had already started me on the medication, however, preferring to begin treatment immediately instead of waiting. It can take a long time to get up to the proper dose, because you start very small and work upward toward the dose that works for you, so he didn't want to make me suffer any longer than necessary.

It has only been in the past couple of months that I've finally been up to the right amount of medication. My energy levels have noticeably increased--I can actually feel that my metabolism has revved up a bit. I feel cheated, though--I could have been feeling like this four years ago if my last doctor had been doing his job and using his brain. I don't know how much the years of hypothyroidism have actually damaged my body, and if I'm going to recover somewhat from that, it could take a very long time.

Left unchecked, hypothyroidism can damage the heart, kidneys, and mental state, and can cause osteoporosis and anemia, among many other problems. Because of the metabolic effects, it causes weight gain, and makes weight loss, even through intense dieting and exercise, nearly impossible. Hypothyroidism is NOT difficult to test for--and is fairly simple and inexpensive to treat. As such, there is NO excuse for anyone with the condition to remain untested and untreated; anyone exhibiting symptoms should be taken seriously by a doctor, instead of being treated like they are not worthy of medical assistance until they lose weight.

Educate yourself on the symptoms, and don't accept no for an answer if a doctor doesn't want to do the tests. Make sure you know what tests are being run, and if they aren't the full panel, ask why--insist that it be done. Don't accept a qualitative answer like "normal"--get numbers, and compare them to the latest medical literature. If your literature shows a result different from your doctor's qualitative answer (outside the normal range, when the doctor's said you're normal), find out why your doctor's opinion is different. If you find that you're not getting straight answers or considerate treatment, get another doctor. Remember, it's YOUR body, YOU have to live in it. It does not belong to your doctor, and you don't have to accept your doctor's word as gospel.

I sincerely hope that my experience can help others get the treatment they need.


Mercy said...

I had a similar experience... I (and when I was a child, my mother) had been asking doctors to check for hypothyroidism since I was 8 or 9. The majority of responses? "You can't have fatigue, you're too young." "You don't have fatigue, you're just in college/grad school." In the few cases when I managed to actually get a doctor to do any tests, they said that the TSH was normal and they wouldn't do any further tests.

Then I moved to Germany. Where the 'normal' range is quite different. The test results I had gotten in the states were out of the normal range here. So I got started on medication for it at age 28, twenty-one years after the start of symptoms. (we're still working up to the dosage after a year)

fetchfox said...

What you were trying to reference (I believe) were T3 (the precursors) and T4 hormones. In layman's terms, the T3 hormones "make" the t4 hormones that are the main hormones referenced in the TSH testing. (If I have that correct, it's very early here and I'm very tired. I should be in bed.)

Also, find out what type of hypothyroidism you have. Whether it is simple hypothyroidism or Hashimoto's (autoimmune).

I have Hashimoto's. I was originally dx'd when I was 20 back in 1994, but received nearly no treatment for it until last AUG. when my TSH was near 180.

Are you keeping track of your ANA and SED rate? Do you know that once dx'd w/one autoimmune disorder your chances of being dx'd w/another increase greatly of being dx'd with another?

Are you avoiding/lessening goitrogenic foodstuffs such as soy?

Sorry if too many questions, the whole hypothyroidism is my thing. It runs in my family. My son was just dx'd on TUES.

Rachel said...

Your post's timing couldn't have been more ironic. I was just telling my husband last night how I was going to demand a full thyroid work-up and not just the standard test my doctor runs every year. I was diagnosed with hypo about 6 years ago and am on Synthroid for it, but I still experience many of the symptoms of one who is untreated I'm cold even when everyone else is hot, dry skin and cracked nails/cuticles, lethargy, and I've gained 25 pounds in 3 years despite a healthy, balanced diet and regular activity. I, too, have heard that the tests can be inconclusive or misleading, so I wanted to get a full work-up this time. Thanks for the added info.

Rachel said...

I want to also add that if you are prescribed Synthroid, insist on the name brand. I've been told by both my doctor and several pharmacists that the generic brand is not as effective, because it works in different ways. I pay about $25 a month for the name brand out of pocket, since my copay for name brand is $35.

SexxxyBitch said...

Very interesting read, I enjoy your blog thoroughly. Here's what happened to me with my thyroid (WARNING: VERY LONG):

For as long as I can remember I have always been very overweight/obese my whole entire life, everyone in my family is obese/morbidly obese. I never knew of any family history for thyroid but at the age of 19, I noticed a lump growing in my throat.

I did have a part time job but knew nothing of health insurance so I had to go to this place for the poor people with no doctor. First off, they make you find EVERY SINGLE document of every kind you could possibly imagine. Getting letters notarized for any reason costed money. Granted, not a lot but when you're poor and barely scraping by, 7 dollars IS hard to come acquire.

Then you have to wait a good 5 hours before you're even SEEN, it's a real HUGE pain in the hooha. Anyway, turns out I had precancerous cells on it and had half of it removed (Grandmother had to help pay for operation, just glad I paid her back and applying for medicaid? Would not wish that on my worst enemy! Again with the scrounging for documents and gas and metrorail money just to get downtown not to mention co-payments..on medicaid!!This was a good 10 years ago when they actually helped ppl).

Sorry, this is getting kind of long. After the surgery I did not keep up on taking my meds b/c I could not, for the life of me come up with 20 every month for my 0.05mg of synthroid much less have any kind of doctor. You will never know the pain and horror of having to apply for medicaid or go to "The Poor People" hospital for treatment unless you have lived it, it's pure and utter Hell!!

This was 10 years ago, before gas cost an arm & a leg, when you could get government assistance and NOT have kids, basically when things were good. Now when I got pregnant I DEFINITELY made sure I was where I needed to be with that (Ugh! Applying for medicaid downtown when you're pregnant..NOT FUN!!).

Well, I'm 29, now, I have 2 kids 2 and 4 and my 4 year old had Type1 Diabetes (not sure if related to taking thyroid meds when pregnant with her or not. I mean it's not like I had a regular doctor, they always threw a new one at me every single time I went). Funny thing is, I haven't been on my synthroid since I had my Daughter 4 years ago, I apparently didn't need it being pregnant with my Son and I am the thinnest I have EVER been in my life!!!

Could your thyroid go from hyPO to hyPER or just regulate itself out? I know better to have health insurance now even though it costs 300/mo. which we DEFINITELY can not really afford. But now that I have 2 kids, do you think I get GOvernment assistance? OF course not b/c my Husband has a full time job and he "makes too much". Whatevs, he makes so much why do I go days w/o eating sometimes, about to be evicted, electricity going to be shut off, car illegal, etc.

I'm just saying, a little poor, a lot poor, it is damn HARD to get health care, even when you have insurance. Because I'm so preoccupied with getting the kids checked up and my Daughter's diabetes I find it hard to acquire the time and money it would take to see an endocrinologist for myself. I can only pray to God this thyroid doesn't eff up on me again. Sorry so long and thanks for listening, God Bless!!

Mary said...

o. o. o. This describes what I am going through. . . o, thank you - for giving me some more things to check out before I decide life can't get better than it is now.

Anonymous said...

I agree 100% about getting actual numbers, not just "normal" diagnoses. Especially since I would not in the least put it past a doctor to softpedal a hypothyroid result if the patient is fat, figuring that she would see it as an "excuse" for her weight. No, I've never heard of this happening, but it doesn't seem farfetched at all.

I'm glad you're feeling better.

Anonymous said...

Delurking to comment because this is so close to what I experienced, too. I don't have fibro, but have really irregular cycles. 8 years
ago, I mentioned this to a doctor, and she told me I was "normal" and that my thyroid was "borderline". Because we moved a lot, I saw 3 more doctors, each one ignoring that I kept saying, "I have a problem" because they saw "normal".

Finally, now that I've been diagnosed as infertile and saw a specialist, I am on meds that will hopefully let me conceive. The "borderline" thyroid - which my last doctor actually said was "a smidge low", because "smidge" is a medical term, apparently - is still borderline. I got put on Synthroid for a test period, and I liked it. My metabolism revved up a little bit and I had more energy. But the subsequent tests came back "normal" again ("borderline"), so she didn't renew my prescription, saying that it didn't do anything and I was being treated for the thing I needed to be (the infertility).

I'm thankful for my specialist who finally treated my most pressing issue, but I'm not sure what to do about the thyroid. The Synthroid seemed to make me feel better. It just pisses me off that if 8 years ago the doctor had listened to me (or I had been more forceful), it wouldn't have come to an infertility diagnosis.

starky said...

I was one of the "lucky" ones. I didn't have a hard time with my doctor. She knew right away I had a problem.

*I* gave myself a hard time. For literally years, I had resisted going to the doctor about my fatigue and weight gain, thinking that this was some failing on my part. I was biking upwards of twenty miles a day, falling asleep on my recumbent bike because I was so tired, and having to force myself to eat a bowl of soup because I had no appetite, and I just kept insisting that this must be *my fault*. I wasn't doing something right, I wasn't exercising or eating right or something.

My husband was no better. I was forced to quit my job over the horrible, wrung out pain in my muscles, and he insisted that if I had just stuck with it, I would "get used to it". He didn't want to, or couldn't make himself, believe that maybe I really was sick.

Anonymous said...

Amen!! I was just diagnosed with hypothyroidism three weeks ago and have been taking medication for that length of time now.

For the past two years, I've been gaining weight, which really didn't make sense, considering my habits hadn't really changed. I didn't experience the absolutely crushing fatigue that many who have hypothyroidism do, but I was definitely less energetic and was having problems being motivated to do even fairly basic things. After a year of the weight gain, I started going through ridiculously irregular menstrual cycles (read: twice as long as my normal cycle) and heavy periods. And to top it off, I'd been getting some pretty bad acne. I hand't had acne since adolescence, so this was rather baffling and extremely annoying.

After about a year of that, I finally went to the doctor and told her all about what I had been experiencing, and she told me it was some kind of hormonal imbalance and sounded like a thyroid issue, so she had me get my blood tested.

My T4 levels (the hormone that the thyroid itself produces) were pretty damn low, though not off the charts, but my TSH levels came back extremely high (7.2 uIU/mL, with the standard/healthy range being 0.3 - 5.5 uIU/mL).

I am just so glad I have an answer for all the weird stuff that's been going on during the past couple years, and I'm glad that it's treatable.

My doctor is rather amazing, so I was fortunate that she was able to catch this immediately - sorry that you had to go through so much to get an answer!

Aislinn D. said...

sexxxybitch: I just wanted to reassure you that your daughter's type 1 diabetes has NOTHING to do with you taking Synthroid while pregnant. (Not a doc, but a med student, so I know a bit about this stuff). Not taking it, and being hypothyroid while pregnant, would be bad for the developing baby, but wouldn't cause diabetes. It's more likely she just inherited the family tendency towards autoimmune diseases, since type 1 is basically the immune system attacking the part of the pancreas that makes insulin.

It sounds like you're really struggling, but I hope you find the time to get yourself checked out, to make sure things are cool with your thyroid. I'm not sure how common it is, but it is possible to go from being hypo to hyper.

Anonymous said...

i'm so glad you posted this.

i've been going similar rounds with my doctor over the same symptoms and she ran the same thyroid panel ("normal") and i am getting more and more annoyed - and too tired to deal with it.

i think my doctor's office spends a lot of time in the company of drug reps who are pushing anti-depressants, because they keep trying to treat me for it. i wish i could wave a wand and get kate massengill's doctor here; she sounds like she knows what she's doing.

oh, and my mom? had thyroid problems, too. i mentioned that in the doctor's office. i harp on it, even. but no. nothing. grrrah!!

Anonymous said...

I looked at the symptoms on Wikipedia. There are so many things that may or may not be attributable to Hypothyroidism, it's really difficult to say if you could have it or not.

Would you say just to be safe, perhaps all fat people should just get a test to be sure?

RioIriri said...

violet_yoshi, I think every person who has the symptoms, regardless of their weight, should be tested.

Pungo said...

I am going to insist on the full testing. My mother has hypothyroidism, and although I've had the TSH tests and the doctors said they're "normal", I don't know if I've ever had the full testing.

I did have to self-diagnose my sleep apnea, and being on a CPAP machine has given me so much more energy! It seems like fat people are just assumed to be "lazy" and have no energy, so doctors dismiss it as a symptom. Sigh!

Anonymous said...

WOW. This is the most amazing post I think I've ever read on self/patient advocacy. AMAZING. I love it all. I have thyroid disease myself -- the autoimmune form of hypothyroidism called Hashimoto's -- and am always searching the internet for other people living with thyroid problems. I cannot agree with you more than patients first and foremost need to get educated, and also, not be afraid to stand up to their DRs. It is so important. At the end of the day, we can't trust our health to anyone but ourselves, you know?

How are you doing with it now? Are you feeling any better since? Sooo sorry it took them so damn long to diagnose you!! I actually write and co-edit a site called, which has a huge community of people living with thyroid disease. We'd absolutely love for you to stop by and get involved!! It helps to know you're not alone in this, you know?

Liz :)