A message to family or friends of those with thyroid disease:
For twenty years, I had chronic and debilitating problems due to my thyroid problem. Yet…practically no one knew how horrible it was for me. Because in spite of my ongoing miseries, I still raised children, made money for the family, did what a wife and mother would do…when I could.
And my scenario is shared by millions of thyroid patients around the world—those you may love and care about. So this is written to help you understand what it may be like for someone YOU love with thyroid disease.
Janie A. Bowthorpe, M.Ed.
1) Just because we are on a thyroid medication doesn’t mean we cease to have problems.
Unfortunately, the vast majority of medical professionals are poorly trained in the treatment of thyroid disease. They have put millions of us on medications that work poorly. Or they use particular lab work with so-called “normal” ranges that are so broad, they mean nothing. So when we complain in our doctors offices about certain continuing or newly-manifested problems, they fail to see the connection to our thyroid disease and push more medications upon us (with more side effects), or imply it’s in our heads (it’s not), or tell us to exercise more (we can’t due to our fatigue) or that it’s due to our age (ridiculous)…on and on. It’s crazy-making!
And even when we figure out that the medication is not doing the job, and move to a better one, we now have other problems we have to deal with from being held in a poor thyroid treatment state for so long. It’s not fun and can take awhile to get out of.
2) Sure, our struggles with having a thyroid problem aren’t the same as “dying from cancer”, but we are still dying in our own way, trying to get well again.
Did you know that the little gland in your neck called your thyroid is affecting every single cell in your body?? Yup, it’s that important. Your thyroid is what gives you energy, keeps you warm and raises your metabolism. Thyroid hormones are key for your immune function, heart, skin, liver and kidney health. Your thyroid plays a role in absorption of nutrients in your stomach. Thyroid hormones play a key role in your moods and your brain’s ability to absorb, learn and concentrate. A healthy thyroid helps to break down fat so you can eliminate excess, including cholesterol and triglycerides. And all that barely touches the surface.
So you can imagine what starts to happen to us when our thyroid goes wonky.
We become chronically fatigued and don’t recover well from most activities; we can feel cold when you are warm; our bodies can gain weight on calories that simply give you get-up-and-go; we have trouble retaining information and tend to become forgetful; our skin and hair dry out or our hair thins: we end up needing naps when you are wide awake; we can get sicker more often due to our lower immune state; our adrenals can start making less cortisol which means we don’t cope as well with stress; we can have sex hormone problems. And all that barely touches the surface of what can be going on with us.
3) We’re not being picky or silly when you see some of us avoid certain foods.
For a large body of thyroid patients who have the autoimmune version called Hashimotos, we have to avoid foods with gluten. If we eat them, our thyroid is attacked even worse! Gluten is a protein found in foods like most grains, such as wheat, rye and barley. And it happens to increase either our thyroid antibodies (if we have the Hashimotos autoimmune brand of thyroid disease) or it tears apart our guts. So that’s why you might see us avoiding all forms of breads, pastries, pizza crust and other foods where gluten is sneakily put in! And it’s hard when we see you eat what you want, but we most certainly can’t!
4) Our growing hips and bellies are not necessarily because we are eating more than you!
We agree with you: if someone consumes more calories than they burn, they will put on the fat. But we gain fat FAR easier than the average Yogi Bear due to the down-regulated metabolism of our hypothyroidism. Some of us eat like birds and STILL gain weight. And though we try to adapt, it’s embarrassing and we hate it. It’s hard for many thyroid patients to avoid weight gain.
5) Those terrible mood swings you see in some of us? That’s because we may now have a cortisol problem that makes life harder to cope with. And we may not even know it!
Because many of us were either undiagnosed or poorly treated for years, our adrenal glands have become wonky from being over-worked. That can mean we either have excessively high cortisol, or more likely, very low cortisol. And either will negatively affect our ability to cope with life. We will tend to overreact to things, become super sensitive, act paranoid, seem angrier, be more defensive….on and on.
Hopefully, we end up figuring it out sooner than later and get the right adrenal treatment.
6) We aren’t faking it when we complain of pain or discomfort!
Sadly, being hypothyroid, especially if we are poorly treated or trying to correct the results of a poor treatment, can mean chronic inflammation, and that can equal chronic pain in some of us. It can occur on the bottoms of our feet, our backs, our calves, in our hips, in our wrists (aka carpal tunnel) and all-over body aches. Sometimes, our doctors call some of our painful areas “Fibromyalgia”, but in reality, it’s usually the result of being hypothyroid.
7) Just because some of us had our “bad thyroid” surgically removed doesn’t mean our problems ended!
To have one of your most important endocrine glands removed is not a picnic. We are now totally dependent on thyroid medications. And it’s not fun.
First, many of us are forced to wait too long after removal to get treatment. So we suffer.
Second, even when we do get a prescription, most of us with removed thyroids are put on a medication which doesn’t work, or gets worse the longer we are on it. Then we are made to feel crazy if we mention those continued or rising symptoms to our doctors who worship the meds they put us on.
And if our thyroid was taken out because we had cancer, we are forced to keep an eye out that the cancer doesn’t return to any area around it. And some of us, who had a treatment called Radioactive Iodine to further kill any cancer cells, suffer with the side effects of that treatment…and wish we had never consented.
8) It all takes time!
Because we were either undiagnosed for awhile, or poorly treated, we may now have a lot of issues which have cropped up and can take time to treat. So we are glad when you have patience with us.