On Friday evening I took the students that I teach to a performance of one of their set works. Beforehand we went for a meal in a noodle bar. We had a lovely evening and I was relieved that I felt well enough not only to function, but to actually enjoy it.
Saturday morning I woke with a slamming headache, I was weak and jittery and disorientated. Pay back! Yesterday was a write off. This morning there was some improvement and during the course of the day I have gradually got myself back (almost).
When I was deciding whether to run the trip, I found myself weighing up, calculating. I decided to go ahead, and I am glad that I did, but there was apprehension playing out in the back of my mind. What if I had one of my bad days, what if one of my colleagues had to step in? I don’t feel that I can voice any of this at work. It would not be viewed sympathetically, so all last week I was pacing myself.
I was diagnosed with Hashimoto’s at the beginning of last year. At about the same time a male colleague had a persistent sore throat and hoarse voice. He googled his symptoms and pitched up on a couple of sites suggesting hypothyroidism (sadly not this one). He eventually landed on the NHS Choices website and decided that he wasn’t hypothyroid. He now thinks that hypothyroidism is JUST a case of
•tiredness
•weight gain
•depression
•being sensitive to the cold
•dry skin and hair
•muscle aches
“Choices” seems absurdly inappropriate. What I do know is that this list doesn’t even begin to scratch the surface.
“Treatment for an underactive thyroid involves taking daily hormone-replacement tablets, called levothyroxine, to raise your thyroxine levels” (NHS Choices). Simple. If you take the pill every morning, problem solved!
My colleagues wonder why I am not better yet. I try to explain, that it is more complicated but sense that some of them think I am making a fuss…..being needy……precious….. another middle-aged woman struggling with the menopause. So I keep my head down. I don’t feel that there is anyone that I can turn to for support at work and that, when you are trying to manage a condition like this, is hugely stressful.
On a day-to-day basis I feel so much “less” than my previous self. In class I stop in the middle of sentences, lost for words. I have forgotten the beginning of the question by the time they get to the end. They’re sixth formers, intelligent and quick. I roll my eyes and we giggle at my ineptitude. One of the students that I teach left college. We were initially told that her absences were because “she couldn’t settle”. It was only after the event that I learnt that she has a thyroid condition and her symptoms made her think she was dying. Poor kid - fancy carrying that around with you. It doesn’t make for a very carefree existence. I wish I’d known.
In the office, I feel like a fly on the wall. On the days when I am really struggling, when I have to go straight to bed when I get home, I observe my colleagues laughing and talking, full of energy, taking their stamina for granted, confident to take on new challenges. And although I don’t like myself for it, I feel envious. In Tears Behind Closed Doors Diana Holmes said she felt “persecuted and resentful”. That chimes. I think my Hashimoto’s remained undiagnosed for a long time, and it has taken a toll on my many aspects of my physical health. For years as I my health gradually deteriorated, just when I thought I was making some headway, I was floored again. So yes, there are times when I feel persecuted and resentful.
The modern work environment - hugely busy with no slack in the system. I don’t want to be seen as the weak link so I don’t feel that I can take time off. Recently I received a letter from the principal congratulating me on my excellent attendance over the last four years. Okay, I know it was just a HR strategy, I don’t even think it was his signature at the end (…….I suspect his secretary has a stamp), but when I think of what has unfolded over the last four years I feel validated. One of the spin-offs of the Hashimoto’s is, I think, osteoporosis (though my ex GP would have me believe that all of these separate issues are entirely coincidental.) I am no stranger to the Fracture Clinic at the local hospital. When I turn up at work with yet another plaster cast on some part of my anatomy I laugh it off – “my annual breakage”. But when I am like this I feel clumsy, slow……and emotionally vulnerable. And of course, the broken bones have, physically speaking, been just the tip of the ice berg.
A couple of years ago, pre-diagnosis, I completed a Level 3 counselling course. I should have started a university course last September, a diploma that would hopefully lead to my qualifying as a counsellor, but my health got in the way. I have for the time being withdrawn my application, but in the meantime I am particularly interested in the emotional effects of living with a thyroid condition. Writing helps me make sense of what I am feeling. Off-loading! Reading over it, I also recognise that I am fortunate. I manage to work (albeit part-time these days) and for that I am massively grateful.
Even if you’re not suffering from crippling anxiety (been there) or the psychological effects of sleep deprivation (wear the T-shirt at least three or four times a week), I believe that living with a thyroid condition reaches to the very core of your psyche. Even though I try to get on and simply live life it somehow keeps rearing its head with every decision that I make.
Written by
MacG
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You've kind of described my life - I went self-employed around 20 years ago now to stop people sacking me for being off sick and to get away from the unbelievers. I don't have Hashis, and didn't have thyroid problems back then (as far as I'm aware), but I do now know that I was hypoadrenal. Have you had your adrenals tested with the saliva cortisol test?
Thank you for responding. In answer to your question, yes I have had my adrenals tested and yes, there are issues there that I am dealing with.
Once again, adrenal fatigue is a contentious issue isn't it. When I was first diagnosed with Hashi's I started researching and looked on another national thyroid association site. I was really confused to read under their "Falsehoods" section that "There is no recognised medical condition called "adrenal fatigue;" the adrenal glands cannot be "fatigued." Either the adrenal is fine and needs no treatment or there is adrenal insufficiency due to adrenal or pituitary failure, as measured by an endocrinologist."
Those of us who know ourselves know that this exists.
A poignant snapshot and a sad indiction on today's workplace, failing to discuss disabling symptoms with HR because of the fear of being seen as unable to cope/being 'let go'.
Have you had serum bone profiles and Dexa scans to measure your bone density? Sounds like you may have osteopenia, if not osteoporosis.
It's a dreadful situation isn't it. I think a lot of organisations make the right noises don't they, but how things play themselves out "on the shop floor" is very different.
Re. the osteoporisis. Yes, I have had a Dexa scan, which told me that I do have osteoporosis. I am eternally grateful to this scan for actually galvanising my GP into action. I was virtually on my knees when I fell and broke a bone (reading that back it sounds funny doesn't it.............IMPOSSIBLE.......but you know what I mean). I asked for the bone density scan and when the results came back they recommended a battery of tests. It was the rheumatologist that I saw who wrote to my GP and suggested they look at my thyroid.
What a beautifully written piece - and so true of the struggle life can be living with this illness. The laughing at yourself and making excuses for your clumsiness to people rings true on so many levels, the one good day followed by several bad days is something I dread, so in the end you try not to have any good days as you know what price has to be paid.
Below is a well know letter to family, friends and work colleagues - print it off and leave it for the people at work to read and maybe, just maybe, their attitudes will change.
Dear Friend/Family Member:
Someone you care about has thyroid disease. You may not know much about thyroid problems, but I imagine, like many of us, you've heard things here and there. If anything, you probably associate the thyroid with weight problems, or think it's an excuse people use for being overweight. Or, you may already know someone else who's taking thyroid medication -- usually Synthroid -- and they seem to be doing fine, so you assume thyroid disease will be similar for your friend/family member.
There's so much more to thyroid disease, and while I can't cover it all in this letter, I'm going to try, briefly, to give you a sense of what your loved one is facing. So can I ask that you set aside for a few moments the information you do have about thyroid disease, to open your mind and heart?
The thyroid is our master gland of metabolism and energy. Every single body function that requires oxygen and energy -- basically, everything that goes on in our bodies! -- requires thyroid hormone in proper amounts. That means we need the proper balance of thyroid hormone in order to feel and live well. We need thyroid hormone to think clearly and remember things, to maintain a good mood, to grow hair and nails, to have basic energy to get through the day, to see well, to digest our food, to burn calories, to be fertile, to get pregnant and have a healthy baby, to have a good sex drive, and much, much more. In some ways, you can think about thyroid hormone as the gasoline that makes the car go. No gas, and there's no way to move forward.
Typically, a thyroid problem comes in one of several forms. Your loved one may be hyperthyroid...that means that the thyroid gland is overactive, and producing too much thyroid hormone. When the thyroid becomes overactive, you can think of it a bit like the gas pedal on the car is stuck, and the engine is flooding. If your loved one is going through hyperthyroidism, he or she may be feeling extremely anxious and nervous, with a rapidly beating heart, higher blood pressure, and even palpitations. Some people describe the sensation as like their heart is beating so hard and loud everyone around them can even see it and hear it! They may be hungry and thirsty all the time, suffering from diarrhea even, and losing weight. Others may even be wondering, wrongly, if your loved one's rapid weight loss is due to an eating disorder or some sort of illness like cancer or AIDS. His or her eyes may be sore, sensitive, gritty and irritated, and vision can even become blurry. Sleep may be difficult or impossible, and lack of sleep combined with the body zooming along at 100 miles an hour can cause extreme exhaustion and muscle weakness. Frankly, people who are in the throes of hyperthyroidism have told me that they feel and look like someone who is strung out on drugs, or who has had 20 cups of coffee after not sleeping for a week. With heart pounding, and all body systems going full tilt, your jittery, stressed-out hyperthyroid loved one may even feel like he or she is losing it, ready to fall apart at any moment. If your loved one has thyroid cancer, they have an entirely different challenge. The majority of thyroid cancers are considered highly treatable and survivable, so doctors and others often cavalierly refer to thyroid cancer as "the good cancer." But the reality is, no cancer is "good," and someone who has thyroid cancer has cancer, "the big C." Cancer as a concept is frightening, and raises fears and concerns. Someone with thyroid cancer initially may have few, if any, symptoms. In some cases, however, they may have hypothyroid, hyperthyroid, or a combination of symptoms of a thyroid imbalance. Most thyroid cancer patients require surgery to remove the thyroid -- and this can be daunting, including the idea of a several-inch incision in the neck and resulting scar. After surgery, many thyroid cancer patients will need to have followup radioactive iodine treatment to ensure that all the cancerous tissue was removed, and it can be many weeks after surgery before a thyroid cancer patient -- who by that point is typically quite hypothyroid -- can start thyroid medication to again get lifesaving thyroid hormone they need. And the thyroid cancer patient in your life will require lifetime of medical treatment for the resulting hypothyroidism, along with periodic -- and sometimes physically challenging -- follow-ups and scans to monitor for a recurrence of the cancer.
These are just a few of the conditions that can affect thyroid patients. There are autoimmune diseases -- Graves' disease and Hashimoto's -- that can be at the root of hyperthyroidism and hypothyroidism. Sometimes people develop a goiter -- an enlarged thyroid -- or benign nodules that cause symptoms. Sometimes a temporary infection causes thyroiditis. And again, these problems can be difficult to pinpoint, misdiagnosed as everything under the sign, and even when diagnosed, poorly treated.
So what many thyroid patients have in common is living in a world that overlooks, downplays, poorly treats -- and sometimes even makes fun of -- their condition.
Magazine articles, books by doctors, patients brochures in doctors offices -- and doctors themselves -- insist simplistically that thyroid disease is "easy to diagnose, easy to treat" even though patients know that this is far from the truth. As for "easy to diagnose," your loved one may have even struggled to get diagnosed -- to get taken seriously -- in the first place. Doctors regularly misdiagnose hyperthyroid patients as having an eating or anxiety disorder, and hypothyroid patients as having stress, depression, PMS, or menopause.
Worse yet are the truly unsympathetic physicians that we all too frequently encounter in thyroid care. Like the marathon runner with hypothyroidism who was in training, on a strict diet, and still gaining weight and was told by her doctor that she had "fork in mouth disease." Or the endocrinologists who tell patients, "Well, you should be GLAD, you know, because you have the GOOD cancer!" Or the doctor who diagnosed a woman with hyperthyroidism by clapping his hands together loudly behind her head, chortling: "Oh, I can always tell you hypers, because you practically jump off the examining table when I do that!"
There are advertisements and comedians who use "thyroid problem" as the not-so-secret code to describe someone who is fat. And there's a whole realm of scam artists out there trying to sell us cockamamie Thyro-this and Thyro-that "cures" for thyroid disease that in many cases can make things a whole lot worse -- or at best, not help at all.
Even Oprah admitted she had a thyroid problem, then claimed it went away, then said she had it but it wasn't an excuse for her weight gain, then decided not to get treatment, and continues to struggle with her health issues.
And perhaps saddest of all, there are friends and relatives who say "I don't buy this thyroid disease thing, it's just an excuse for not losing weight" or "Thyroid? Hah! She's just lazy!" Or, "Why can't he just get OVER it and get back to normal?"
Husbands criticize their wives for gaining weight. Teenagers whisper behind a friend's back about anorexia. Coworkers complain that their colleague is "lazy."
Once we're diagnosed, treatment is not an easy fix for many thyroid patients. Doctors try to rush hyperthyroid patients into permanently disabling the thyroid with a radioactive treatment that will make them hypothyroid for life. Many doctors believe there is only one medication to treat hypothyroidism -- a medication that does not resolve symptoms for all patients. When patients learn about other available options, doctors may stonewall, refuse additional treatments, or push antidepressants, cholesterol medications, weight loss pills and more, instead of addressing the thyroid issues. The conventional medical establishment believes that treatment for thyroid problems is one-size-fits-all. This cavalier attitude means that many thyroid patients struggle for years to live and feel well, despite being diagnosed and "treated."
I'm here to ask you -- in a world where thyroid patients are disregarded, overlooked, misdiagnosed, abused, exploited, mocked, and ignored -- to be the person who truly "gets it" for the thyroid patient in your life. Be the person who understands that while thyroid disease may not be visible, it is causing your friend or loved one to suffer. Be the person who understands that even though celebrities aren't talking about thyroid disease, and sports figures aren't wearing bracelets to promote thyroid awareness, that this is a genuine, difficult, and life-changing diagnosis.
Be the person who opens mind and heart to the thyroid patients in your life. Be the person who listens, and learns about the struggles and challenges. Be the person who empowers the thyroid patient in your life, by helping him or her do as much as possible to improve health. Be the person to help find doctors and practitioners who do not view your friend or relative as a cookie-cutter patient on a thyroid assembly line. Be the person who helps the thyroid patient in your life to maintain balance-- to help find time for rest, for exercise, for stress reduction, for self-care, for proper nutrition, for fun!
Live well,
Thank you for the insight into your life and for sharing you frustrations, hopes and fears with us.
Thank You, MacG for that - Snapshot - Wonderfully written.
I think most of us, if not all, can relate to your experiences. I talked this afternoon to a friend of over twenty years, and came away feeling yet again like a fraud, liar, lazy, hypochondriac etc. etc..... I need to... Toughen Up...and deal with what life has thrown at me!!! And Listen to The Doctors!!!... They Know Best !!! Do They ? Not in my book they don't. She has watched me be at deaths door for goodness sake...and struggle with my health all these years (have now lost my marriage, home, job etc) and still she tells me I read about too many illnesses on the internet! so that the following week I've just got to have them. It's not shoes and handbags I'm researching! It's how to fight to get my health back! People just don't have a clue! It is no wonder that you (and me and all of us) can sometimes feel persecuted and resentful, who wouldn't.
Drs. receptionist told me off for reading about.. medical things.. on the internet ! What about NHS Choices? Oh Yes! the doctors say you can read that but definitely not anything else!
Please, do not put yourself down for working...albeit part-time these days...you will have been through hell, be proud of what you have done....against the odds. I'm glad you enjoyed Friday evening,and and I'm sure you students did too.
Thank you for responding. I know what you mean about the reading/researching. I was told by a friend that I had "read too much". What I was trying to do was make sense of what was happening to me and desperately trying to get my life back. I'm so glad that I persevered. Knowledge is power!
I will never forget the first time I encountered Peatfield's book. I kept yelling out to my partner "THIS IS ME............THIS IS ME.................come and read this........THIS IS ME"
I know this wasn't the point of your post, but I notice you said you went to a noodle bar. I can be absolutely floored by eating Chinese food - I'm assuming it's the MSG - think it's called Chinese Restaurant Syndrome.
I saw this posted somewhere else and thought it was very apt - it's written by a Lupus sufferer but I think can be applied to any chronic unseen illness:
"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted."
"Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”."
Many, many thanks for this. It really makes you stop and think about the reality of living with and managing a condition. (I have filed it away for future use.)
Re. the noodle bar. We chose a well-known chain that has a detailed section on its website on nutritional and allergy information re. their food (inc. gluten etc....), so we sort of trusted it would be OK. It's good that restaurants are getting up to speed like this.
Reading your post was indeed a pleasure as it was so beautifully written - albeit the difficult and sometimes sad content is all so familiar to many of us. I am sorry for you that you are still struggling so much - however your writing reveals a calm and thoughtful person that will methodically work things through....in the same way you probably do when learning a new piece of music
On the plus side you do have a diagnosis which is helpful in some ways - that to me is a positive and enables you to start your journey of healing. My profile will tell you how my illness has held me back for fifty years and without a diagnosis until 2005. There are many things not included in that list It is just so sad that GP's look at you as having lots of individual conditions without joining up the dots. I rarely went to the Docs as I always blamed my past illness and treatment for the debilitating fatigue and pain. My retirement to Crete in 2004 allowed the focus to shift from work to health...and Hashimotos was diagnosed. I too downgraded at 47 from a demanding career to having a business whereby I could sneak away and sleep when fatigue and pain completely overtook me....this I did for 10 years.
I just want to share that there will be light at the end of the tunnel as far as the Hashimotos is concerned - and I am sure you will have read all the information available. At 67 I am feeling so much better - have just returned from taking a yoga class in the village and was told I had worked them too hard this morning Have two more classes to go this week. I have learnt so much from this forum as to how to tweak my health - and it has worked well. I am grateful to the many people here who guide you in many different directions of learning and information.
Thank you again for sharing your snapshot - it was poignant and sensitive. I am sure you are a very valuable member of your school - as Music is your gift then you must be very talented and in demand - they simply cannot do without you.....
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Newly diagnosed hypothyroidism- struggling
Stopping my thyroxine - a bad idea?
“Feelings of suspicion and distrust” - known Levothyroxine side effect
Update on Total Thyroidectomy last February. 
BBC4 Programme - 26th February 2014
