Sunday, September 21, 2008

My Own Experience With Hypothyroidism

Previously, I wrote about hypothyroidism issues in pregnancy in general. Now I want to write a little bit about my own experiences with hypothyroidism. It's a widely varied journey, but one with lessons for others who think they might have thyroid issues, so I want to share it.

Hypothyroidism Begins with a Roar

When I was younger, everyone always considered me "overweight" and I had lots of pressure to diet, but I wasn't really "obese" at that point. Then the PCOS and hypothyroidism really hit.

Starting at about age 16, I began skipping periods. Scared me to death, but it didn't happen that often and I knew periods could be variable, so I figured I was just one of those people who was a bit irregular.

Then around age 17 I began gaining weight and lots of it. I had been on a diet recently so I just figured it was re-gain (and I'm sure some of it was). Looking back now, though, I think much of it was also the big gain that often accompanies the double-whammy of PCOS and hypothyroidism.

Between 17 and 21, I gained about 100 lbs. That's right, a hundred pounds. [Wow, it's upsetting even writing that; I can still hardly wrap my mind around it.] It happened without changing any of my food habits or anything else significantly. It was devastating. But I couldn't seem to stop it, no matter what I did........and I did a lot.

I fought it with everything I could think of. I cut back on food......but I kept gaining. I thought maybe it was dorm food, so I moved out of the dorm and started cooking for myself.....but still kept gaining. I went to Weight Watchers again......but kept battling crazy fluctuations of weight. I signed up for a college fitness class and spent an extreme semester exercising like crazy.....yet I gained 25 lbs. in that semester alone, WHILE doing all that exercise and being on Weight Watchers. (And no, that was definitely not muscle gain.) The coach thought I was lying and that I must be a binge eater....but I wasn't.

Dealing with Doctors: Round One

During this time period, I went to the doctor a couple of times and they tested my thyroid levels. I was told they were always "normal" or "a little on the low/borderline side, but nothing that needs treatment." So we concluded that thyroid wasn't an issue for me, despite the tremendous weight gain I was experiencing.

Now, of course, I wish I had the exact results from those tests to look at. Back then, the ranges considered "normal" were much wider, and I suspect strongly that I fell into a gray area, where TSH tests are within normal limits as they were defined then but would now be considered abnormal by many endocrinologists.
[So lesson #1: Always get your exact test results and know the range the lab used to define "normal," and then keep those results so you can track them over time.]

I finally got so desperate about the weight gain that I signed up with a radical commercial diet center. 500 calories a day, plus vitamin/mineral supplements. Seriously. I did that for 6 months. I lost 50 lbs. all right, but it was NOT a "good" or "healthy" loss. I'm lucky I didn't seriously damage my body. That was the turnaround that began my fat-acceptance journey.

I ended that diet for many reasons, but in particular because by the end of 6 months, I began gaining weight on 500 calories per day. Yes, GAINING weight on 500 calories a day.

That's when I realized that the whole "calories in/calories out" mantra was full of crap, and that there must be something more to all this. The math didn't add up; there must be more variables than doctors realized.

I also began realizing that the whole dieting thing was taking me places mentally and emotionally that I didn't want to go, and I felt for my own health and sanity I had to stop. So I did. (Smartest thing I ever did.)

For the time being, I gave up on seeing doctors and concluded I must not have any thyroid issues. I knew something was going on, but figured that yo-yo dieting had screwed everything up. I gave up on trying to find answers and tried to concentrate on stabilizing my weight.

Dealing with Doctors: Round Two

Fast forward a few years. I was married and working at a career, but seeing more and more signs of problems. I was skipping periods again, I had many other symptoms that were bothering me, and I was constantly fighting my weight. I finally decided I had to go consult an endocrinologist because I just knew something was wrong.

We had just moved to a new town so we picked an endocrinologist from the phone book. I went there and filled out all the paperwork, extensively describing my symptoms and history. The doctor didn't even really look at it. He was very disdainful, very dismissive. He didn't take my concerns seriously at all.

He told me I was just looking for an excuse for being fat.

I was devastated and didn't go back to a doctor for several years. I continued to skip periods and to experience other worsening symptoms, but I couldn't see going back to a doctor and being dismissed like that again. So I only kept getting worse.
[Lesson #2: Don't give up if you can't find a doctor who will take your concerns seriously; don't let a fat-phobic doctor keep you from getting the care that you need. Find a new doctor!]

Dealing with Doctors: Round Three

Finally a friend gave me a book about thyroid issues. I read it and went, wow, that's me. I got a basal body thermometer and starting taking my basal body temps (BBTs) and sure enough, they were in the basement, and I had so many of the other symptoms they listed too.

This friend recommended a doctor to me who was trained in complementary medicine as well as traditional medicine, and who might be more inclined to listen to what I said. I was dubious.....complementary medicine?......but decided to give it a shot.

This doctor was SUCH a breath of fresh air. He was so nice, and he really listened to me. He didn't discount what I said just because I was fat and therefore "must" be lying about food. He asked me lots of questions and took a lot of time with me. He wasn't a whacked-out hippie; he knew his science and used traditional treatments, but he also kept an open mind to the possibility that traditional views of medicine might be missing some things. He was a gem.

My blood tests were nominally in the "normal" range. However, he said that my symptoms certainly pointed to hypothyroidism and he took all the BBT data I brought seriously. He suggested a "trial of meds"----putting me on a low dose of thyroid meds (Armour thyroid) for a short period of time to see what happened, re-doing the blood tests, and then re-evaluating at that point.

WOW, what a difference. I felt SO much better, so quickly. I had energy again, my periods became regular again, my weight dropped without any change of habits, my skin was no longer like a lizard's.....I felt like a new person.

We tested my levels again after a few weeks on the thyroid meds, and my levels were much better within the normal range instead of at the edges of normal. He felt that if I truly didn't have hypothyroidism, the meds would have made my TSH levels go into the abnormal range, when what they actually did was get them into a better range. So he felt that this (plus the symptom improvement) merited a diagnosis of hypothyroidism. We continued my medication.

Dealing with Doctors: Round Four

A few years later, my insurance changed and this doctor was no longer "in-network." So I switched to an internist closer to home, thinking it wouldn't make that much difference.

Unfortunately, he insisted I switch to Synthryoid instead of Armour Thyroid for meds, and I never quite had the same level of benefit again. But I guess I should count my blessings that he kept me on some form of thyroid meds; some doctors might have taken me off them completely.
[Lesson #3: Not all doctors are equally knowledgeable and willing to work with you on your thyroid issues. It's worth it to hold out for a good one.]
My Experiences with Pregnancy and Thyroid Issues

After that, we moved and I began my family. I am so relieved that I didn't start a family before my hypothyroidism was discovered and treated....who knows how things would have gone without it!

I think having my thyroid levels normalized helped me conceive without any problems (despite my age and size) and it helped me keep my pregnancies normal. We tested my levels periodically in my pregnancies and they never went haywire at all, so I was lucky in that way.

However, after baby #4, I did experience postpartum thyroiditis. I never experienced the hyPERthyroidism that often accompanies this, but boy howdy, did I experience the hypo part! I gained a lot of weight postpartum (normally I lose weight postpartum while breastfeeding), I was exhausted, I was cold all the time, and my skin started looking lizardy again. Yet even with all my years of experience with hypothyroidism, I didn't recognize that my thyroid had gone whacko until many many months later, in retrospect. I just failed to see the patterns.
[Lesson #4: A history of thyroid issues means you may be particular vulnerable to thyroid wackiness during vulnerable times such as pregnancy, postpartum, menopause, and advanced age.]

I'd had my thyroid levels tested at about 4 months postpartum, as part of my yearly thyroid tests. My TSH came back higher than usual, but still well within normal so they didn't adjust my dosage. Now, we don't know how much it fluctuated before and after that; my personal opinion is that it was probably bouncing all over the place and we just didn't know it because we only tested once.
[Lesson #5: If you suspect your thyroid is out of whack, you may need to test multiple times over a short period of time to catch the variations.]

Fine-Tuning Thyroid Meds

Over the years, with much experimentation, I have found that I feel best when my TSH levels are between 1.0 and 1.5, and any even small deviation over that really affects how I feel, the stability of my weight, and skin etc. symptoms. So even though my TSH postpartum had come back "normal," it wasn't normal for me and where I feel best.
[Lesson #6: Some people are exquisitely sensitive to even small changes in TSH levels, and even when levels test "normal," they may not be optimal for that person.]

I also found that I feel better with a combo of both T4 and T3 meds; if I take only Armour, my TSH may be fine but my T3 numbers are too high. If I take only T4 meds (Synthroid and its equivalents), I don't feel as well. It's a combo of a little of both that seems to keep me closest to normal. Makes for twice the prescription co-pay, but it's worth it.

[Lesson #7: Many people feel better when using alternatives to Synthroid, or combos of T3 and T4 meds. However, it's important to track not only your TSH but also your T3 and T4 numbers, as these may be out of whack even when the TSH is fine.]

After going on thyroid meds, I never skipped a period again. EVER. Many of the skin problems I'd experienced (cystic acne, boils etc.) lessened significantly. I was no longer gaining weight uncontrollably. Keeping a stable weight was still a struggle, but not a losing struggle anymore. And I just felt so much better, in so many ways.

Now, I have to be honest.....I didn't experience a total resolution of all my symptoms. I still have some of them.....even after fiddling with my dosage, even after getting meds with both T3 and T4 in them, even after doing all the things I'm "supposed" to do.

There may still be something out there to try yet, or there may be some other problem complicating full resolution......but I also have to concede the possibility that hypothyroidism may be more complex than we think, and even with thyroid meds my symptoms may never be fully resolved. I hope doctors will keep researching hypothyroidism and its implications because there are a lot of people out there like me that experience help but not full resolution of symptoms with treatment.

But the improvement I have experienced has been remarkable in so many ways that I am grateful that I persevered in getting diagnosed and treated. It has absolutely been worth the time and trouble.

[Lesson #8: Not everyone gets full remission of symptoms even with best current treatment, but perhaps as they learn more about hypothyroidism and its co-morbidities, treatment will get even more effective. Partial remission of symptoms is far better than no remission at all.]

Hypothyroidism Needs to be Taken More Seriously

My experience (and the similar experience of many others) tells me that many symptomatic people with "borderline" TSH readings actually benefit significantly from treatment to optimize their thyroid levels, yet there is a great deal of resistance to this in the medical community.

Although more study is needed, some research does seem to indicate that people of size and those with PCOS do tend to have thyroid issues (especially the "borderline" kind) more frequently. People in these categories should have their thyroid levels tested regularly throughout their life, as a precaution, and especially before pregnancy.

Yet it's still so hard to get doctors to take "borderline" TSH readings and symptoms seriously, or to get newer diagnostic standards widely accepted by most doctors and labs. Far too many people are still being told they are "fine" when they are not, or are not being tested at all.

This is a story that is so common among people of size. We tell doctors over and over that something is wrong, that something is "off" and we just don't feel right. And over and over, we are not taken seriously, or it's all blamed on being fat.

The tremendous resistance to our experiences and concerns seems to come from the belief among some healthcare professionals that fat people are "just looking for an excuse for being fat" and you can't really trust what they say. And that if they'd just get off their butts and lose weight, all these issues would be resolved.

For a while, there was some headway on this problem, but now I see the pendulum swinging back again towards blaming and closed minds. If you protest that something else besides "calorie math" must be going on, they think you are making excuses for yourself, lying about what you actually eat, or are simply in denial.

Healthcare professionals simply MUST start stepping outside the paradigm that obesity itself is the main cause of all problems in fat people, and that weight loss is the only way to really deal with these issues.

They must consider the possibility that obesity may sometimes simply be a symptom of other issues, instead of the cause of them. They must recognize that permanent weight loss is difficult and not just a matter of willpower. They must start recognizing that this focus on weight loss at all costs often causes more problems than it fixes. And they must start looking for ways to improve symptoms and quality of life in people of size that don't necessarily involve weight loss as the "fix."

And they simply must lose the judgmental attitudes that fat people are always simply looking for an excuse for being fat.

Final Advice to Those with Hypothyroidism

If you suspect you may have hypothyroidism, or if you have already been diagnosed and are working with a healthcare professional, inform yourself as much as possible about thyroid issues. Find a healthcare professional who listens to your concerns, will work with you to find the best possible meds and dosage, and keep reading the research.

There are good, decent healthcare professionals out there that will take your concerns seriously; it's really worth finding them. But the first step is informing yourself and becoming an advocate for your own needs.


Katrina said...

Thank you for posting this. It's been difficult read, because there's a lot of my own experiences in there and I'm still trying to find a doctor willing to fiddle with my medication.

I mean, I think I've wrung out my current dosage as much as I can - see as I wait a half hour to eat, an hour for coffee, 4 hours until dairy and my multi-vitamin, and later an iron pill.

I've cut out soy products, some goitergenic foods that I loved and I'm even trying to cut down on my gluten intake, in an effort to increase my vitamin/mineral absorption.

I do yoga and swimming. And still. I have weeks where I'm functioning a little lower. Or gaining weight.

And I'm so tired of everyone saying, "Wait a little longer..." or saying that I'm using my thyroid as an excuse.

Anonymous said...

Thanks for taking the time to write and post this. I don't have any experiences to share, but I've been finding your posts incredibly informative.

Shelly said...

I wonder if you will come across this but I am hoping you can gice me some guidance. I am a technically "obese" woman. I have been bigger than the "norm" all my life. In 2000 I was diagnosed with fibromyalgia. I am a classic case and have most symptoms that are included in the laundry list of fibro symptoms. In 2004 I had a full blood work up done and was basically told I was fat and lazy and while I have a slow metabolism there is nothing wrong with my thyroid.

Flash forward to 6 months ago and I have been experiencing extra special, what I thought to be, increasing fibromyalgia symptoms. The fatigue is so terrible I am having trouble functioning at all, I also noticed an increase in my overall pain and some wildly fluctuating mood swings. I am 37 years old and will be trying to get pregnant very soon so I went to a new OB/GYN even though I was terrified, and got the check up. He was very nice and didnt mention my weight and when I told him that for the previous 6 weeks I had spent 3 weeks on a diet of LESS THAN 1400 calories a day without losing a single ounce, and another 3 weeks on Atkins only to lose a total of 6lbs, with 1.5 lbs coming back immediately upon eating 1/2 cup of cooked rice. He agreed that I could probably use a thyroid function test.

Well the results are in and I was told by his nurse, over the phone that I am normal. But all my research indicates that they are wrong. I am hoping you can tell me if I should continue to persue this or if I should just accept my sluggish metabolism, moodiness, irregular menstrual cycle, flakey dry skin and amped up fibromyalgia and try to live with it.

I live in a VERY small community with very few options for doctors. The closest endocrinologist is 75 miles away.

Age 37
Weight 210
Free T4 .63
I was told "normal" is .63 - 1.60
T3 106.26
I was told "normal" is 60 - 181

Thank you very much and I love your blog. I hope to refer to it often when I am finally having a baby :)