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What Your Doctor Doesn't Tell You About Hyperthyroid and Hypothyroid

Updated on March 10, 2017
Nell Rose profile image

When I was diagnosed with thyroid disease, I discovered that my local doctors knew nothing about it. This is what I learned.

Thyroid disease encompasses hyperthyroid and hypothyroid types.
Thyroid disease encompasses hyperthyroid and hypothyroid types.

What and where is your thyroid?

Thyroid disease is one of those illnesses that hardly anybody thinks about—until they find themselves suffering from it.

You never see it talked about on TV, and magazines never mention it. In fact, the only time I'd ever heard of it before was when someone was talking about not being able to lose weight.

So, because of this experience, I assumed that thyroid issues were insignificant and easy to control. I thought that once the medication kicked it, it could easily be forgotten.

I couldn't have been more wrong. I discovered that suffering from an overactive thyroid was hell. Not only that, but the side effects of the medication, along with the way the thyroid can swing so easily toward under-functioning, was even worse.

Take it from me, being diagnosed with a thyroid problem is not easy. In fact, it can take over a year to get your body balanced and back to normal again—and even then it is something you must keep your eye on every day.

So what are the symptoms of an over active and under active thyroid?

An overactive thyroid can start to show up in quite a few ways. In fact you may feel really healthy as it can speed up your motor functions and make you rush around feeling full of energy. The trouble starts when you notice that you have lost a lot of weight, your eyes seem to be more staring, and your hands start to shake.

This is caused by the thyroid gland in your neck producing too much of the thyroid hormone. It is a bit like the fight and flight stimulation caused by stress. And the really bad thing about it, is that it can cause your heart to work too fast, pumping the blood around your system.

When I was diagnosed with Graves Disease, another word for Hyperthyroid, I was told in no uncertain terms to go home, sit down, and don’t move until the tablets that my doctor was going to give me had kicked in. Why? Because if I had an accident, and needed surgery, it could kill me! Not such and easy going illness, is it now?

Symptoms of Low Thyroid

  1. Sluggishness
  2. Weight gain
  3. Stomach problems
  4. Slow or stopped menstruation
  5. Depression ( A lot of depression is mis diagnosed, when really it is a thyroid problem)
  6. Slow thought process
  7. Can't focus properly with your eyes
  8. Dangerous to drive as your mental process doesn't work properly
  9. Panic attacks
  10. Poor sleep and nightmares
  11. Skin problems such as lack of elasticity.
  12. Very low thyroid can cause pockets of water to form on your face and body.

Symptoms of Over Active Thyroid

  1. Weight Loss
  2. Fast Heartbeat
  3. Shaking of the hands and poor elasticity of the skin on your hands and arms
  4. Out of breath
  5. Stomach problems
  6. Over active brain, can't sleep.
  7. Panic attacks.
  8. Goitre (Swelling in the neck)
  9. Very heavy menstruation
  10. Aching bones and muscles
  11. Bad eyesight such as dizzyness and after glow. Imagine a camera that has taken a picture of someone holding a torch. The glow from the torch spreads across the photo. This is similar to what happens when you look at something.
  12. Night sweats and sleep paralysis, very bad I might add.

Thyroid eye disease
Thyroid eye disease

Thyroid Eye Disease

Thyroid eye disease is another side effect. Your eyes will look puffy or strange, and your eyesight will start to suffer. You will also get watery eyes and pain. Not everybody will get this, but it is very common. Any thyroid problem is an auto immune disease. This means that your body is attacking itself. That's why its better to have a low thyroid than a high one.

Diagnosis and Pain

When you have been diagnosed, there are a number of different options for you to take. Tablets, radioactive tablet, and surgery. All depending on how bad your symptoms are. Your doctor will find the best one for you.

What the doctors do not tell you.

Now we get to the part that is really important. And trust me when I say that I have tried and tested all these! Not deliberately you understand, but by way of pain, trial and error.

For a start, lets take a look at the tablets.

You may think that the doctor will always give you the right medication. You have to remember that they probably have never had a thyroid problem so they are just doing it by the book.

But everybody is different. I was given a set of tablets called Carbamazole. To start with they were fine and my hyperthyroidism started to go down nicely. What I didn’t realise was the effect that they would have on me. I started to feel pain in my arms. In fact it got so bad that I couldn’t move them without yelling in agony.

Then it spread to my legs and back. The only way I can describe it is, imagine laying down on the road and letting a car run you over! Then being left to walk home. Yes, it was that bad. Every time I moved my arms, legs and back, it was excruciating. The strange, and very disturbing thing was, I called the doctor, and they gave me pain killers, not knowing why I was suffering like this.

I was admitted to hospital twice, and the doctor thought I had arthritis! In other words, nobody knew what was wrong. So, I did the only thing that I could think of. I bought a book about my illness.

That was the best thing I could have done. It turned out that I was allergic to Carbamazole, and when I told the doctor, he sat there, looked through his medical book and decided to change my tablets! I actually told him the ones that I wanted, and after that the pain went away!

Learn About The Disease

The second that you are diagnosed with thyroid disease, make sure you get a good book about your illness.

Do not take it for granted that the doctor knows about thyroid illness. They may have training, but they do not know how it feels. Apart from that, a thyroid illness has many symptoms. Some very subtle, others more obvious.

A doctor will learn the basics, and know what to look out for, but everybody is different. Its one of those illnesses that has so many side effects and different aches and pains. Unless you suffer from it, you will not know. It's not something that can be learned.

I discovered that hyperthyroidism is a very different illness. I was literally in the dark, and the annoying thing about it was that the doctors had no idea. You have to keep an eye on it yourself. Simple as that.

Take Charge

If you are told that you may have to have the radiation tablet, make sure that you ask as many questions as you need to know. Its your body. Don’t just go in there, take the tablet and go home. You choose. If you would rather carry on with the tablets, or have surgery, let them know. Taking a radioactive Iodine tablet can make some people sick, and you must keep away from babies and small children for at least two weeks. Saying that, its not strong enough to cause you any problems. It has been used for years. But you must be careful hugging people and staying near them for a few days.

That’s where the book comes in handy. The Internet is good for information, but the trouble is that you have to keep clicking on different sites to find exactly what info you are looking for. If you buy a book, then its there for you, all you have to do is flick through the chapters. Take this illness into your own hands. Its not only good for your health, but mentally you will feel a whole lot better if you know exactly how you are going to feel.

Radioactive Iodine Tablet laist.com
Radioactive Iodine Tablet laist.com
Mental Confusion caused by Hypothyroidism careman.wordpress.com
Mental Confusion caused by Hypothyroidism careman.wordpress.com

Hypothyroid can be frightening

On the other end of the scale, hypothyroidism is when you haven’t got enough hormone in your body. According to doctors this is much easier to control and sort out than if its too high. that’s all very well, but once again, doctors do not know how you personally feel. A low thyroid can be a very scary thing.

Why? Because bluntly speaking, it can make you feel like an idiot. Harsh? Sorry, but it’s the truth. A low thyroid is frightening because unless you have someone who knows how to recognise the state you are in, then basically you can go downhill fast. I don’t mean to frighten you, but it’s the truth.

Mental Confusion

According to the book that I read on the subject, a few years ago a young girl kept going to the doctor because she said she was ill. He diagnosed depression and gave her tablets. The situation got worse, but the doctor still said it was depression, and never looked for anything else. The young girl ended up in a coma and nearly died because the doctor had misdiagnosed her! True story!

Why did that happen? Easy, the symptoms are very similar to depression. And the worse thing about it is, when your thyroid hormone is too low, you cannot think! Your brain feels woolly and numb. Even looking at something will take you ages to figure out, purely because your mind is working too slowly. Your eyes see, but your mind does not connect.

How the hell are you going to look after yourself if the doctors misdiagnosis you?! Trust me on this, it happened to me!

The reason why it happened in my case was that the stupid doctors knew it was too high, so they gave me tablets, and the radiation tablet, and sent me home. Not one of them said come back in a month.

So, without thinking, I carried on taking them. My face filled with water pockets, I couldn’t recognise myself as it was swollen, and my mind felt as thought it was full of wool. Eventually, luckily for me, I looked in a mirror and realised that something was wrong. Just that one little voice in my head saved me.

I went back to the doctors and he said, your thyroid is dangerously low! And quickly changed my tablets! The stupid doctors, the specialist and all of them put together never ever said anything about this! The fact is, they didn’t know! They presumed that I would figure it out! How the hell could I figure it out when I couldn’t think?

So please, please get a book, read all about the symptoms, what happens when you are too high, check to make sure you are not to low and so on.

Do it before your mind decides to pack up on you. Trust me, nobody else will help.

And before you say, well, my friends will tell me. Or my partner will see.

NO! Two points on this one.

First, friends are too polite to say, hey, you look ill, anorexic, shaky, etc.

And secondly, your partner simply will not notice! It's true. It's such a subtle thing; it's very hard to spot.

Did You Know?

There are many celebrities who suffer from thyroid problems, including:

  • Rod Stewart
  • Oprah Winfrey
  • Kelly Osbourne
  • Kim Cattrall
  • Linda Ronstadt
  • Missy Elliott
  • and many more

Make A List And Stick It On The Wall

To wrap up, take note of the list below. If you find yourself in this situation and have been diagnosed with thyroid disease, make sure you:

  1. See a doctor.
  2. Buy a book on subject.
  3. Change your tablets the second you feel ill or in pain.
  4. Keep nagging and phoning the specialist, he is the only one who can help. GPs are useless!
  5. Keep looking in the mirror. If your face gets skinny, fat or filled with watery sacks, get down the doctors fast.
  6. Check your hands for the shakes, its one of the best signs of over activity.
  7. Check your heartbeat sitting down, running, and then sitting again, to see if it beats too fast, or changes normally.
  8. If you suddenly find that you are staring into space a lot, or sitting around without thinking, take more thyroxin and get to the doctors, your thyroid is too low.
  9. If your eyes start to get wobbly vision, get checked out again, some of the symptoms can either be too high or too low, they do overlap. Symptoms can feel scarily similar, so you may not know if you are too high or too low. Do not diagnose yourself.
  10. And last but not least, whenever you go to the doctors with any of the above symptoms, make sure you have a blood test. Never, ever let the doctor give you medication for depression without first checking to see if it's your thyroid that is causing your symptoms.

A mistake like that can kill you!

Sources

© 2012 Nell Rose

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    • Nell Rose profile image
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      Nell Rose 3 weeks ago from England

      Hi Lindy, I am so sorry you are feeling so ill. If you are too high you will need some other tablets that will take your thyroid hormone back down, like carmazole, or propylthiouracil . the second one is by far the best. Maybe your doctor is trying to take you slowly off the levothyroxine? it really does all depend on how high you are. Go back to see him and ask how high, and when do you start taking the tablets for getting it lower? you need to keep an eye on it. as I said above, doctors are useless where thyroid is concerned. if you print of my article take it to the docs and say, this is the meds I need! you MUST keep an eye on it yourself, try to measure up your meds. if you feel dizzy cut down on the levothyroxine, make sure you keep getting blood tests, okay? good luck! and let me know how you get on!

    • profile image

      Lindy 3 weeks ago

      Hi my name is Lindy and im from south Africa. I had under active thyroid for 8years. A month a go I felt very bad and my symptoms felt different and worse. So I went back to the dokter and took some blood tests. My dokter told me that I have hyperthyroidism know. So he told me to stay on the levothyroxine. I was taking 300 mg and he told me to take 200mg know. It does not seem right. I feel so bad and it is effecting my work. Please help

    • Nell Rose profile image
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      Nell Rose 3 weeks ago from England

      Hi Rukeya, sorry to hear that, maybe she is suffering from depression too? it can make you feel really ill with a high thyroid. Just talk to her and tell her that it will be okay as long as she gets her meds right she will soon feel much better.

    • profile image

      Rukeya 3 weeks ago

      My mom has a overactive thyroid, we only found out about two months ago. My mom do not talk at all, she will only say yes or no sometimes. Can this be related to the overactive thyroid? please help..

    • Nell Rose profile image
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      Nell Rose 5 weeks ago from England

      Thanks Gillian, glad it was helpful.

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      Gillian Foley 5 weeks ago

      Your information is very help full as I have over active thyroid myself and I'm on neomercazole

    • profile image

      cindi 7 weeks ago

      My mother in law has a hyperthyroid and is on medication. The tsh level is 6.1 now. She is experiencing paranoid symptoms which are very scary. Can this be a result of this tsh reading?

    • Nell Rose profile image
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      Nell Rose 8 weeks ago from England

      Thanks Snakesmum, yes it does take time doesn't it? and you always have to check that it doesn't go too high or low, thanks for reading.

    • Snakesmum profile image

      Jean DAndrea 2 months ago from Victoria, Australia

      About two years ago, I was diagnosed with hypothyroid - my Dr knew something wasn't right so sent me for blood tests. Took about a year to get the dosage of meds right, but I'm stable now. Tests twice a year to confirm everything is still ok though. Learned a few things from your article, thanks!

    • Nell Rose profile image
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      Nell Rose 2 months ago from England

      Hi, Not sure what you mean? I think I get your point, so on that thought I would say that the thyroid is either too high or too low. best go and get a blood test to check your thyroid, okay?

    • Nell Rose profile image
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      Nell Rose 2 months ago from England

      Hi Lily, first of all don't panic! I know how stressful it is obviously because I have had high and low. first of all there are thousands of Americans and Europeans who walk around each day without knowing they have a bad thyroid! fact. so that puts it in perspective. being high is dangerous, simple as that, so if they say take the iodine then please take it. you won't feel a thing trust me. as for your lovely baby surely you have family who can help? if not, then maybe friends? its not ideal but she will need her mum so a few weeks of being uncomfortable away from her will be best in the long run. I did it, I just kept to the other side of the room from my family, or slept in a different bedroom from my partner. as for your grandmother I am sure they would have tested you by now? if not make sure you get all the blood tests etc. it does make me mad to think that such a dangerous thing as bad thyroid is totally ignored by docs.

      so make sure you double check everything yourself. and if you get tablets that make your body ache and hurt go to the docs and say you need another type. I did it. carbamazole messed me up by making my arms and legs hurt so badly! I bought a book and read it through, then did it myself. its your body, double check all the time. best tablets are propothouracil.

      one thing to double check is that when you have had your meds, keep an eye out for going too low! thats what happened to me! your thoughts get muffled, you put on weight and my face blew up like a puffer fish! docs are very lazy with this. blood tests all the time okay? and it will get better I promise you!

    • profile image

      Lilyp 2 months ago

      I've just been told I am hypethyroid after 7(!) Years of complaining of the symptoms. I cannot for the life of me understand why it's taken so long to diagnose. Apparently my doctor had to do a different test than usual. I am now terrified as my grandmother had thyroid cancer and my mother had all the symptoms of hyperthyroid but was never diagnosed and died in her late 40's. I have a baby and don't know how I can possibly have the radioactive iodine as there's no-one to take care of her for the two weeks I can't be near her. I am finding the whole situation frightening and overwhelming.

    • Nell Rose profile image
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      Nell Rose 2 months ago from England

      Hi Malissa, it sounds like your thyroid has got dangerously low! the trouble with graves is that the symptoms seem to overlap, the eyes and seeing go funny when its too high, but the tiredness and feeling strange is classic low thyroid, you really need to keep up with your blood tests. being high or low can change so quickly! good luck, and get that blood test done.

    • profile image

      Malissa Anderson 2 months ago

      Hi everyone, firstly I would like to thank you all for your stories, I was diagnosed at the age of 35 and was told hyperthyroid and graves 3 years on was told I had to have a full tbyroidectomy due to thyroid cancer. No I am sicker than ever my doctors have never seemed to get it right. I feel funny in the head and in the front between my eyes, my vission has been weird and eyes seem to water a lot and light hurts, by memory is very bad and some times get pain in my chest. I do not feel normal at, all and find myself tired but it seems like a weird tired( hard to explain ) no one seems to understand especially my doctors, but I am getting very bad. There are other symptoms as well but mainly the weird feeling in my head. Any help would be greatly appreciated thanks

      Malissa

    • Nell Rose profile image
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      Nell Rose 2 months ago from England

      Hi Trina, anything and everything! but because you are feeling probably still ill its best to eat healthy but top up in between with high calorie drinks that you can buy in the chemist, good luck! hope you feel better soon!

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      Trina wallace 2 months ago

      What foods can you eat to gain weight after starting the medication for hyperthyroidism?

    • Nell Rose profile image
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      Nell Rose 3 months ago from England

      Thank you Honest Person, I hope you feel well soon. It took me quite a while too, just rest and recuperate, and thanks again.

    • profile image

      Honest person 3 months ago

      I had radiation for severe hyperthyroidism. I did have a thyroid storm following treatment and lost 24 lbs in 22 days. You only have to be in isolation 3 days . It's not the end of the world. I will say it's been 11 months and I'm still not stable. I have headaches frequently, go days without sleep and then go days where I can't stay awake. It's a life long battle yes. But living is another way to look at. Do the treatment that's best for you . Not getting treated will make your life worse. This article is an opinion. Graves is not the same for everyone. You would never know I had it by looking at me. My eyes are normal and I'm the right weight for my height. You can't assume you will be 100% ever but you can't assume you will feel horrible all the time. Stay positive or you will never recover. Don't believe that you will have all the symptoms and problems that someone else has. Don't pity yourself over Graves disease we are living not dying.

    • Nell Rose profile image
      Author

      Nell Rose 4 months ago from England

      Thank you Jeanne I am so glad you found it helpful. Its only when we live through something like this that we know what's going on and how much the doctors know. I have to admit I was shocked at the lack of knowledge. Good luck in the future, hope you are better soon.

    • profile image

      Jeanne Garner 4 months ago

      Thanks so much!! I have learned a lot!

      Thank GOD for people like you!!

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