photos of woman show different sides of hypothyroidism

The Different Sides of Hypothyroidism

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Since January is Thyroid Disease Awareness Month, I’m posting photos in this story to raise awareness about the different sides of hypothyroidism.

Hypothyroidism, especially the autoimmune kind, can be an up and down journey. It can be difficult to diagnose, difficult to get the correct medication for it and difficult to keep under control. Certain things can flare the condition up, and, contrary to popular belief, it’s often not easy to treat or live with.

The thyroid gland, located in your neck, produces hormones that are needed for every function and cell in your body. When you’re not making enough of these, it’s called hypothyroidism. Producing too much is known as hyperthyroidism. Both are unpleasant conditions that have dangerous risks associated if not properly managed.

Hypothyroidism is not just an excuse for being overweight, and hyperthyroidism is not an “easy way” to lose weight.

Both wreak havoc on thousands of people’s lives every single day. Both can leave you not just unable to work, but unable to get out of bed, unable to have a family (infertility) and even unable to think clearly, since thyroid hormones are important for brain function, mental health, heart health, as well as metabolism, energy and body warmth.

photos of woman show different sides of hypothyroidism

Photos of me looking at my best on social media often disguise the truth behind what thyroid disease can really do to someone. I have good and bad days where I might look like the top two photos on the worst days, which were taken before I was diagnosed. The lower left image is me on an “OK” day, and the lower right one is me on a great day. 

Living with thyroid disease means living with a limited amount of energy (referred to as “spoons”) every day and learning how to use it efficiently, so I can function like the next person. Some days I can spend most of the day in bed, paying for doing things average people do without a second thought like going to a social event. Other days, I have the energy to make myself look presentable.

It’s important to know that although thyroid disease isn’t well known generally, and you may think you don’t know anyone with it that:

• The World Health Organization estimates that 750 million people in the world have some form of thyroid disease.

• One in 20 people in the UK have thyroid disease, according to the British Thyroid Foundation.

• The American Thyroid Association says that as many as 60 percent are undiagnosed.

So could this include you, a friend or family member? Review the symptoms of hypothyroidism and hyperthyroidism at the American Thyroid Association’s site.

If you believe it’s possible you have a thyroid issue, please make an appointment with your doctor and have them run a full thyroid panel.

For those of us already diagnosed, we can gain awareness this month about how to check our thyroid glands regularly for any abnormalities, what vitamins may help us and what tests we need. We should also be aware of what results we are looking for. And we should share any resources we’ve found helpful. For example, I would suggest all hypothyroid patients to follow the organizations recommended under “Organizations I Support” on my blog.

And finally, if you know someone with hypothyroidism or hyperthyroidism, please take the time this Thyroid Disease Awareness Month to learn a bit more about their condition and don’t be afraid to ask us questions! It’s nice to know you care.

Follow this journey on The Invisible Hypothyroidism.

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Fighting for a Hypothyroidism Diagnosis

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What was wrong with me? Tired. Depressed. I’d gained almost 40 pounds in a year.

Something was going on. I respected my doctor, but I knew me, and he didn’t. So I decided to help him figure out what was going on. I requested a copy of my blood work.

When I’d locked down my suspicions, I confronted him and demanded a referral for an endocrinologist. He wasn’t happy about it.

“Doctors are human, too,” he said. He scratched out a script for the sixth antidepressant in about four years. He had no problem giving me antidepressants. But a referral? Out of the question.

I insisted.

“When a doctor sees you’re on antidepressants,” he continued, “he’s not going to take you seriously. I mean, you’re on an antidepressant. We’re human.” He handed me the script and the referral and left the room.

Like many women, I was overwhelmed, exhausted.

For years, I’d complained of:

  • depression
  • dry, brittle heels
  • hair loss
  • weight gain
  • dry, brittle nails
  • insomnia
  • achy joints
  • fatigue

And my doctor had handed me script after script for sleeping pills and antidepressants. His reason for the fatigue: children. His reason for the weight gain: age. If I’d accepted that, I might’ve been dead, divorced or both by 50. I was just that miserable.

He, like so many other doctors, didn’t connect the dots and realize that I’d been complaining of common hypothyroidism symptoms. But, my blood work “said” my hormone levels were “within the normal range,” so my doctor said my thyroid was normal.

Year after year, the same result. Everything seemed OK.

Everything was not OK.

My body wasn’t getting enough thyroid hormone, and it was screaming for more. When I got a copy of my blood work, I discovered that, yeah, my thyroid numbers were “within range” – barely. That’s when I insisted on the referral.

I was convinced, even if my doctor wasn’t, that my body needed more thyroid hormone than I was putting out. Each of us has a hormone level that’s ideal for us. Just because I was “within the normal range” didn’t mean I was OK. He’d been treating my lab results – not me – for years and didn’t want to give me a referral… until I insisted. When I did, he wasn’t happy.

Hypothyroidism affects millions (yes, millions) of people worldwide, mostly women. And, yet it’s one of the most unrecognized and misdiagnosed problems in the world.

The thyroid is a butterfly-shaped gland that sits below your Adam’s apple, about 8 inches below your nose. According to the American Thyroid Association, when your thyroid hormone levels are too low, you can experience symptoms that wreak havoc on every aspect of your life. And, you think you’re going out of your mind.

I took the referral, saw an endocrinologist, and realized my doctor was right: The endocrinologist didn’t take me seriously after I told him I was taking an antidepressant.

I had a family history and symptoms, but after I said the “a” word, he switched gears and said my decided symptoms weren’t my thyroid and could be attributed to a lot of things. I was a walking poster child for hypothyroidism.

But he insisted “no self-respecting endocrinologist in the world would prescribe thyroid hormone with your numbers.” And that was that. My life continued to crumble: my marriage, parenting, relationships. I felt like a big fat failure as a mom, as a wife and as a woman.

I went back to the same primary care doc a few months later complaining of the same symptoms. He was ready for me. Armed with the endocrinologist’s report, he handed me a referral for a psychiatrist, whom he said could prescribe an anti-psychotic. I walked out of the office near tears, doubting myself.

I eventually found a new doc. I moped in and started with the usual drone of symptoms and problems. Thank God my hair was falling out because when she moved in to examine me, it caught her attention. I was shedding. Short broken-off strands were sprinkled all over the exam table, my shoulders and my back.

She sent me to a different endocrinologist, who after looking at my lab results, reluctantly (because of my numbers) agreed to try a three-month trial of thyroid hormone.

In three months, my thyroid numbers had inched up to the middle of the range, I felt good and was on my way to getting my groove back. I’d had a treatable condition that took five years to diagnose because my doctors refused to look outside of the scope of common practices.

Like many, I trusted my doctors without question. It never occurred to me that they might not be fully versed in hypothyroidism, its symptoms and causes. Don’t get me wrong. I have the utmost respect for the medical profession. But, I’ve learned I’ve got to question my doctors, get second opinions and most importantly, never give up if I believe I’ve got a legitimate health issue. Doctors are fallible.

After all, they’re human, too.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Taiginda

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Naomi Batty - National Academy of Hypothyroidism

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Naomi Batty is a patient advocate who lives with hypothyroidism.

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What 'I’m Tired' Means to Someone With Hypothyroidism and Adrenal Fatigue

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Imagine this:

You go to bed at 8 p.m. because you’re so unbelievably tired. You sleep pretty much straight through the night, maybe waking briefly, but nothing to hugely disturb the amount of sleep you get, before your alarm goes off at 7 a.m. for work. That’s 11 hours of sleep. Yet you feel more tired than when you went to bed the night before. How is that possible? 

You drag yourself out of bed, because unfortunately you have to work to keep your house and pay the bills, so you take a shower (if you’re lucky, you can manage this), get dressed and make your way downstairs. All of this was hard because it felt like you were moving a dead weight. A body that didn’t want to do any of those things. Putting on your trousers left you breathless and getting in the shower almost made you collapse. You likely also felt a bit dizzy, lightheaded or weak whilst doing these things as well, but you’ve learned to manage them, with enough time and persistence.

As you make your way out of the house, your legs are making their best effort to stop you. Walking to work/your car/the bus stop is draining every ounce of energy you do happen to have left after that shambles of a night’s sleep. You feel sick, your heart is pounding and you’re having hot flushes.

You get to work, and even if you have a pretty sedentary job, it’s going to be a long day. The room feels freezing, even though everyone in the office doesn’t feel the same. When someone opens a window or puts on a fan, your bones ache even more and it makes all your symptoms ten times worse. You struggle to get out of your chair and walk to the toilet. You struggle to get yourself a drink or some food, if you even have the appetite for it. You struggle to type on your computer because your fingers individually hurt and your hands are weak. When the phone rings, your heart stops with the shock of a loud noise. Your reflexes are poor and your arms are absolutely aching with this heaviness that’s like having weights tied to them, but you manage to answer the phone. You forget for a second what you’re supposed to say, then you muster up a “Hello, ___ speaking. How can I help you?” It comes out quiet and often croaky. You feel drained already and it’s only 9 a.m. You’re exhausted in every inch of your body. Your fingers are heavy and stiff.

For the rest of the day, it’s a struggle to get anything done. You can’t think straight, and even the simplest of tasks take 100 times more energy than if you weren’t so fatigued. You answer the phone again later and completely forget what you’re supposed to say. You type an email and completely forget halfway through what you were going to type. Someone asked you if you want a cup of tea, and you can’t compute what they’ve asked you. You have this mental block. This is thyroid brain fog.

Mid-afternoon, you get a sudden slump where you feel even worse. Your eyes are now heavier than ever, your blood pressure speeds up or slows down (could be either) and things like backache and headaches set in. They’ll stay with you all day.

After what feels like a 20-hour day, you make your way home, barely even standing anymore. Your body is punishing you without any reason. Yesterday was a normal day. You didn’t overexert yourself and you haven’t done anything to deserve this struggle today.

You get through the front door and collapse on the sofa, just a few feet away from the door. You sleep for a couple hours, before waking up and seeing it’s about 8 p.m., so you make your way to bed and sleep for another 10-11 hours, maybe even more. If you’re lucky, you manage to get some food and drink. The fatigue can make you feel sick, though.

You might sleep through the night, or, despite feeling like you’ve ran a marathon, you might toss and turn, unable to sleep, knowing how awful you’re going to feel the next morning. You’re in despair and can’t bear to think about the next day. Your alarm goes off at 7 a.m. for work. You get up feeling more tired than when you went to bed the night before. Again.

The same day unfolds.

*****

Most people, when reading that, would imagine this is the life of someone with the flu or a similar illness. Most people only experience a day like this when they’re ill. Not every day.

But this is a typical day of many thyroid patients and/or someone with adrenal fatigue. I have both, and I’ve had many days like this. Adrenal fatigue affects many people with thyroid problems, so those people, in effect, receive double the dose of fatigue. Often this level of fatigue and struggle are signs of a patient who is not yet on the optimal dose of medication for them (this can take a while to figure out), but for some it never really goes away. We’re all so different.

Can you imagine how fed up you’d feel, feeling this way every day? How frustrated you’d be? How much of an impact it would have on your daily life? This scenario demonstrates how thyroid patients typically have no time for socializing or doing anything they enjoy. Our lives revolve around sleeping and trying to stay awake. It’s a struggle to function “normally” and maintaining a job with this condition can be incredibly difficult. Some are even bedridden.

The impact it then has on mental health can be devastating.

This absolute fatigue leaves you unable to climb stairs, unable to type on a computer at work, unable to get out of your chair, unable to just stay awake – or at least very hard to do so.

It’s more than being tired. I don’t mean “you had a late night and are a bit groggy today” tired, I mean absolutely exhausted. Like you could fall asleep with every blink you take. When getting up the stairs is such a horrendous task that you have to start planning about half an hour before you want to go upstairs to physically prepare yourself for it. And even then, you need someone to help you. I guarantee, if you do not have a chronic illness, you will not know what this fatigue feels like.

A lot of thyroid patients wake up in the morning and no matter how good their night of sleep was, they never feel refreshed. They often feel more tired and incredibly unwell. Mornings can be so difficult for a thyroid/adrenal patient. Everything is a huge effort and they never find themselves “rearing to go.” Many find themselves having to start the morning with caffeine, and it barely does anything – if it does anything at all – to help their fatigue. We get the “mid-afternoon slump” around 1 p.m. – 3 p.m. where we feel ready to drop off completely. People are often unsympathetic and can’t understand why we need to sleep so much, often thinking it’s laziness or avoidance. But little do they know!

Can you imagine your life being ruled by sleep, where everything you do has to be considered alongside your energy levels?

Many thyroid patients say they can only get things done if they have a “can’t stop” attitude. The moment they sit down or rest their eyes, they’re done for the rest of the day, and they pay for it over the next few days.

Before I got my thyroid properly treated and began looking at my adrenal health, completing simple tasks like taking a shower, doing the food shopping or putting the laundry in the washing machine would knock me out. I’d wake up after 14 hours of sleep some mornings, load the washing machine, sit down with a cup of tea and fall back asleep immediately for another five hours.

On weekends, my Saturdays and Sundays were both reserved for trying to get as much sleep as possible. I’d binge-sleep on the weekend, hoping it’d “top me up” for the working week, but it made no difference. I had no life.

With thyroid fatigue, you could get 14 hours of sleep or four hours of sleep and feel exactly the same. At my worst, I felt like a 21-year-old in a 91-year-old’s body! And that is no exaggeration. It’s especially frustrating for those of us who used to be so active. I loved keeping active and exercising a lot, but my hypothyroidism and adrenal fatigue stopped me from walking anywhere and working out, which I used to do most days. I was lucky just to get to the toilet upstairs unaided. My ability to keep up work, relationships and housework was diminished.

So you can probably imagine that sometimes thyroid patients living with this have to cancel plans, and sometimes it’s quite last-minute. Though it’s no fault of their own. All they do is sleep and think about sleep and plan sleep, so when they have plans to do something else, it’s usually the light at the end of the tunnel. So if they have to cancel, you can imagine how devastated it makes them. The next time you think they might be making up excuses, being lazy or being a cop-out, please realize that when this is your life, you have no real control and you’re not to blame.

We didn’t choose to have underactive thyroids.

When a thyroid or adrenal patient says they’re tired or fatigued, we really mean truly, absolutely, abnormally exhausted.

This post originally appeared on The Invisible Hypothyroidism.

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Image via Thinkstock.

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When Friends Think I'm 'Milking' My Chronic Illness

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You are invited to a party. You feel rubbish but decide to say yes. The thought of socialization when you feel like absolute dirt, mentally, physically and emotionally, scares you, but you want something to look forward to. The diagnosis of an underactive thyroid and its many, many symptoms has gotten you down. Spending some time with friends, relaxing and having a laugh sounds like a good idea, though. It’ll take your mind off it for a bit, and you’ll feel like you’re taking back some of the control hypothyroidism has stolen from you by making the decision to go.

But then the day comes and you feel really unwell. You’re gutted. Your thyroid has decided to punish you for even thinking you could go out and enjoy yourself. – OK, maybe not exactly, but you end up having to pull out of the social event because you’re just not up to it. You’re absolutely exhausted, you can barely stand and you feel like you have the worst flu ever. There’s no way going would be a good idea.

Your friends may say it to your face, or not, but they think you’re a let-down. They think you’re lazy, not making the effort and a cop-out.

They’re so wrong. You feel bad for pulling out. You do not need to justify yourself. This is not your fault. They likely have no idea what you’re going through. You didn’t ask for this horrid, devastating, life-changing disease.

You shouldn’t feel sorry. So don’t. 

Your friends and those around you should be understanding. I’ve experienced it myself, and it’s so heartbreakingly frustrating. The people who should understand and feel for you, dismiss what you’re going through. It’s as if they have no idea. Well, they likely don’t, or they don’t actually care that much at all.

I hardly ever cancel on people. I’ve had people do it to me, and it’s frustrating, so when I do do it, I really am very ill indeed. I’ve learned since having an underactive thyroid and adrenal fatigue that I must put myself and my health first. I can’t afford to get that ill again or begin on that slippery slope. And real friends would recognize and respect this. They’d want the best for you and care about you.

But at times, I’ve felt like people think I milk being hypothyroid and having adrenal fatigue. They don’t understand the full extent of just what it’s like to live with. It can be unpredictable. We might feel well one day and then be struck down the next. Think we’re being over-dramatic if you will, but we may even feel like we’re dying on bad days. We may feel quite well when we first agree to the plans, and then a few days before, or on the day itself, we become really unwell. Mentally, physically, emotionally… going would make us more unwell. People who don’t live with our health conditions have no idea and should not judge. If we have to pull out, we shouldn’t feel bad about it. If someone else had to pull out because they had a sickness bug, or a diarrhea bug or the flu, then people might be more understanding. I live with flu symptoms every day of my life, and yet, I’m put down for needing some “me” time. I have nothing to apologize for. I have nothing to feel bad for. I have a lifelong, chronic health condition that is unpredictable and difficult to manage. I did nothing to cause this, and I’m already handling this the best I can.

A good friend would understand that. They’d understand your struggles or at least sympathize.

To those who think we’re cop-outs, lazy or just not making the effort, the next time you think this, please realize that when this is our life, we have no real control and we are not to blame. Imagine yourself in our shoes.

This post originally appeared on The Invisible Hypothyroidism.

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Thinkstock photo by Digital Vision.

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When I Reached the Top of the Stairs Without Having to Crawl Up Them

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There was a time when I really hated stairs. I mean really, absolutely, undoubtedly hated stairs. My hypothyroidism was so bad that I needed help to get up them, or I crawled up on my hands and knees, taking a few steps at a time before sitting to rest for a few minutes. I’d usually sit and cry while resting in between steps. It made me so sad to think I couldn’t even get up stairs.

In 2014, the year before, I was incredibly active. I completed 5K runs, I ran twice a week, went to the gym three to four times a week, walked four miles five days a week, played badminton once or twice a week and participated in a two-hour dance session once a week. My weekly schedule rotated around what exercise I was doing. Every day had some form of physical activity scheduled in.

Then, in September 2014, I started noticing I was more tired than usual, and it never went away. I was permanently exhausted and that concerned me. I also started getting random leg cramps, which impeded my running and walking. And I had aches and pains and long recovery periods after exercise.

Between then and April 2015, I got much, much worse, collecting new symptoms as time went on before eventually being diagnosed with autoimmune hypothyroidism (Hashimoto’s thyroiditis) in the summer and started on medication.

So sitting on the stairs, unable to climb any higher on my own, I sat and cried while thinking about all of this. I used to have to plan when I needed to go upstairs — to use the bathroom, for example — because I could only go up them maybe three times a day — max.

Since changing medication for my health conditions and taking a few supplements, I’ve been feeling much better. I’ve been aware that I’m able to tolerate more exercise, not get sleepy until around 9 p.m. and get up more easily in the mornings as part of my drastic recovery.

But this evening on a walk to the train station with my other half, I unexpectedly sprinted up the stairs to the station bridge. I ran up them like I used to a couple of years ago without thinking. My other half shouted, “Whoa! Take that, thyroid!”

I reached the top of the stairs and paused for a moment. Did I really just do that? That was amazing.

My other half then joked that it resembled a moment in the movie “Rocky,” so he got me to pose for this embarrassing photo:

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I’m feeling good. I’ve made progress, and I’m proud of how far I’ve come in my thyroid journey so far. I don’t want you to give up, either. You’ve got this. The change I’ve gone through in just a year is through sheer determination and persistence.

Sitting on the stairs and crying because I couldn’t get myself to bed was a real low point. No one should have to feel like that. Make sure you get the treatment you deserve and conquer those stairs.

Follow this journey on The Invisible Hypothyroidism.

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