Hi, I was diagnosed with hypothyroidism (Hashimoto's) a couple of months ago. I'm on the starter dose of levothyroxine and waiting for my next blood test. I'm not noticing any difference yet and am still very tired and keep gaining weight, so I expect that the dosage needs to increase.
I have mentioned the diagnosis to a few friends, colleagues and family. Some are nice, most are confused, and some - with no medical knowledge or personal experience of thyroid issues - make the most annoying suggestions: I am sleeping too much; I need to stop eating dairy, etc. It is driving me up the wall. I wonder if other diagnoses attract this kind of advice. It is a medical condition and I will continue to feel unwell until it is correctly treated, but their suggestions imply that I am doing something wrong and if I correct my behaviour I will feel better. Is it just me or is that quite offensive, particularly in the workplace?
Before I throw a wobbly, does anyone have any suggestions on how to talk about hypothyroidism with colleagues? Or is it best not to mention it and carry on as best you can?
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Sorry to hear that you have hashi's but this is a great site to find people in similar situations and advice as well. I saw this a few years ago its from a facebook group called Thyroid Sexy. There are a few "open letter's" like this floating around. I sent a few of them to friends and family. Some read it some ignored it. Yes it always a frustration to be misunderstood, but they won’t ever really get it, my partner is the one who understands it the most but even he struggles at times. Sometimes you just have to let things go, their ignorance is not on purpose. Rxx
Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.
I'm so sneaky--I don't always show up in your blood work.
Others around you can't see me or hear me, but Your body and brain feels me. I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun? I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems.
You know those crazy mood swings? That's me.
Crying for no reason? Angry for no reason? Irritable, everything looks black, feel like you can’t find anything positive to hold onto? Relationship problems because your partners or friends don’t understand? No sex drive? Feeling flat emotionally?
You can thank me for that too.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are trying to look forward to a great day, I can take that away from you.
You didn't ask for me. I chose you for various reasons: That virus or viruses you had that you never really recovered from, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me which is more common than most realize. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others?
That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Shortness of breath or "air hunger?"
Yep, probably me.
Liver enzymes elevated?
Yep, probably me.
Teeth and gum problems? TMJ?
Yep, probably me.
Hives? Headaches?
Yep, probably me.
Vision problems? Yep, probably me.
Heart or high/low BP problems? Yep, probably me.
I told you the list was endless. I can cause medical problems from the tip of your head to the tips of your toes.
You may be given a TENs unit, get massaged, told if you just sleep, eat and exercise properly I will go away. You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better" or "change your thinking and be positive."
They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac or crazy, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next, or worse, what that person’s name is.
You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
They will not understand that having this disease impacts your body from your brain to your feet and that every cell and every body system and organ requires the proper amount and the right kind of thyroid hormone medication for YOU.
Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto's Disease; welcome to my world.
THIS IS THE ONE I SENT OUT as I don't have Hashi's
I think it is time that we come to some understanding, some realization of the reality of my life, and how that affects your lives. You see, I fear that if something were to happen to me, and you had to call an ambulance and they asked you if I had any medical conditions, what would you say?
“Yeah, she has some kind of thing, don’t remember what it’s called.”
Why? Why wouldn’t you remember? Because you didn’t take the time to learn about it, to embrace and to learn how it would affect you as much as it does me.
You see, I am a hypothyroid mom
What is hypothyroidism? In layman’s terms, my thyroid no longer functions (nor has it functioned for many years).
What is the big deal you ask?
Many, many people suffer from hypothyroidism. It’s quite common in fact, but it’s a game changer.
So what does your thyroid do?
Well, it does so many incredible things in your body, that is, when it works. It stores and produces hormones that affect the function of virtually every organ in our bodies and regulates our metabolic rate (how the body absorbs nutrients from the foods and vitamins that we ingest). In a nutshell, when the thyroid shuts down completely, the body shuts down. But you didn’t know this because you didn’t take the time to listen, to do the research that I asked you to do.
Thyroid disease is largely hereditary. There is no warning. It just manifests one day until you cannot function any longer. You drag yourself to the doctor and find out that you will be poked, prodded, and pilled for the rest of your life. Along with hypothyroidism, come many other ailments – arthritis, high cholesterol, depression, fibromyalgia, and a plethora of other good stuff. In my case, arthritis appears to be slowly setting in.
So, what are the signs, the symptoms? Extreme weight gain (or extreme weight loss for others, and that’s awful too), hair loss, mood swings, chills, exhaustion, constant napping, insomnia, pain, aches, foggy brain, dry, flaky skin (you know, when you say “Mommy has furry skin”), and general malaise.
Treatment? Constant monitoring of blood levels, a cocktail of pills from thyroid hormone replacement medication to statin drugs to pain medications.
Is there a cure? Nope.
Does it suck? You bet it does.
There are however two ways to attack this disease. You can be a hypothyroidism warrior as I like to champion myself, or you can stay in bed for days on end without lifting your head from the pillow (and trust me, there are many a day that I would love nothing more than to do just that).
Me, well, instead I choose to be a warrior.
I get up at 6:30am, spend an hour waking up this foggy and tired brain, wake you up, get you ready for and off to school, go to work myself and do my best to keep these eyes open until the end of the work day and the drive home looms ahead. I get home, and plunk. Down go my things, and down I go.
You see, by this point, I am both mentally and physically exhausted – not in any way that you could possibly understand. This is a constant lifelong sentence of exhaustion. So I close my eyes for a few minutes to give myself a little boost before I wake up to do household chores, pay bills, do homework checks, help with studying, laundry, refereeing squabbles, and anything else that may come up in between. Then, well, then I run off to my second job – a much more physical job. Perhaps physically easy to everyone else, but by the time I get there, there truly isn’t much left in the tank. After a short stint, I return home to finish up what is left of the household duties (and yes, they have to be done) before the tank reaches completely empty and the engine shuts down.
So, call me lazy, whiny, negative, miserable, but you know what? I AM a warrior!
I have not given up or given in. Yes, some days are more difficult than others, but I fight and do my best not to let anyone see this, albeit, this is becoming more and more difficult to hide. Please do not take offense if I need some quiet time, some help and most importantly, some love.
I walk in the door every day and the first thing I do before plunking everything down, is ask each of you how your day was. When was the last time anyone asked me how my day was?
I’m not whining, I’m winning,
I’m not lazy, I’m tired.
I’m not grumpy, I’m in pain.
So on those good days, I love to celebrate – a day with no nap in the car, a day with minimal pain, a day where I actually accomplished everything I set out to do, a day when I shared love with my family. The bad days, I promise myself that tomorrow will be better. Sometimes it is, sometimes it isn’t, but do you even notice?
It’s time to notice that your wife, your mother, IS a hypothyroid warrior and will not give up, ever.
However I need the support and love of a hypothyroid husband and children more than ever. This disease is also your disease, like it or not.
Tomorrow when I walk in that door and before I plunk, look at me, look into my eyes, my soul, and you will know exactly what I am feeling. Do this every day, and you won’t even have to ask me how my day was, you will see how my day was.
Easiest way is not to talk about it, people who don't have chronic conditions wont understand and to be honest probably don't care, as long as those close to you know then don't bother trying to explain to others 🙂
It happens with any medical condition. People are normally well-meaning, but unless they have been through exactly the same (and often, even then), they are often uninformed and talking nonsense. I find it best to simply not tell colleagues about medical stuff. If you find that your thyroid is impacting your work, then if your company has an occupational health team you might want to talk to them and make sure that they keep a record. If your direct line manager is an empathetic type then you might want to tell him/her. My last manager was a complete g*t, so health matters would be the last thing I would talk to him about, as he would use it as a reason to criticise, downgrade performance evaluations, and change the way work was allocated. But, beyond those, I would not tell other colleagues unless they happened to also be good friends with common sense.
When the well-meaning do suggest stuff, just do the mental equivalent of putting fingers in ears, singing la-la-la-la-la in your head, whilst smiling and nodding.
Thanks folks. I've only mentioned it to a couple of colleagues that I'm close to as I wanted to explain why I don't have energy for doing social stuff in the evenings, and also why some days I seem low energy (in their words). I think they think they are being helpful. I'm going to just not mention it in future but I have to say it's a really disappointing aspect of human nature...
Any attempts to explain my various health conditions to others have just left me despairing of the human race. Just tell the people who really need to know about your condition. As for the rest, I've found it's better to say nothing beyond making a vague statement about living with 'the limitations of a long term health condition', and just politely decline to respond if they follow up with ignorant questions or remarks.
The vast majority of people don't get it, and will never get it, even if they become ill themselves (in which case, no-one else on the planet will ever have been as sick as they are). Sickness and disability remain huge taboos in our society, so keep close anyone who does not appear to be judging you. Take care though; I made the mistake of thinking my in-laws were reasonable people, when in fact they were just skilled in polite fakery. When I found out, too late, what they really thought of me and my situation, I cut off contact for the sake of my sanity.
If your lucky you get a poor person face if your unlucky like me you get a this guy is making stuff up face. Nobody believes that one day I’ll be feeling a little ok and the next day I couldn’t get up from bed.
Its a tough one, my last team leader at work was very supportive and she always monitored my wellbeing, my new TL I've knowen for years but he has more on his plate and his own personal issues which I completly understand. As for telling family thats not always straight forward, I have 3 sons and none of them really understands how bad and low you can feel at times. Just have to get on with it.
The best thing to do is to learn about the condition, then hit them back.
E.g. cutting out dairy: there's no point cutting out any foods just now, until you're steady on your meds, otherwise you won't know whether it's the food or the medicine that's making the difference.
Sleeping too much: Hypothyroidism causes chronic fatigue, and if you push through, you risk making the chronic fatigue a permanent thing, so it's worth listening to your body for the next little while, if it will stop you from developing a bigger problem in the future. That is also a good response for lack of motivation.
It is pretty tough, I know myself how much people underestimate the impact of thyroid issues. My mum was hypo, and I will admit I didn't appreciate how hard she had it until I developed hashimotos myself (you can quote me to others with that one if you think it will help your case).
Bloods should be retested 6-8 weeks after each dose change in Levothyroxine
So you are due blood test NOW
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels if not been done
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
ALWAYS get actual results and ranges on test results
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
You should ,and get the results with ranges and post for advice.You may need to have private testing as many do here as GPs usually only repeat test TSH and as Slow Dragon says you need more than that alone.
Have a look at Thyroid UK website for more information including the symptom list.
True ,but remember that around 80% have no problem at all on levothyroxine and most of them are not watching this site and have not heard of Thyroid UK ,Patient Thyroid Advocacy and other such sites.
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Hadn't seen the NICE guidelines before, thanks. Going to push for more regular tests otherwise it could be a very long time before they find the right dosage, if they increase in 25mcg increments.
My defence has been to learn as much as I am able to understand about my condition and as many faults as I can discover in the way I have been treated. Then, if somebody asks me, I swamp them with information, most of which will be incomprehensible to them. When I say list out the organisations that are at fault they change the subject. I then find they never ask me again about my thyroid again.
Oh dear I so sympathise. I had same problems. Sadly in the end I did isolate myself . Doing better now but never let on how I manage to cope . Lie a lot , make out all is well .
When it comes to meeting up with friends(!) say I am already busy elsewhere.
Yes I do get a bit lonely but I am SANE as a result .
I find this site important to me . Often makes me mad but it is a great source of knowledge and comfort . These good people are very helpful and supportive
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An Open Letter to Family and Friends of Thyroid Patients 
Increase Dose (but not telling GP) 
can you tell me what the best brand to take for low folate 
Can anyone tell me what a good starting out dose of NHT is. 
