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

Thyroid disease is one of those illnesses that hardly anybody thinks about—until they find themselves suffering from it. You never see it being talked about on TV or in magazines. In fact, the only time I'd ever heard of it before I was diagnosed was when someone was talking about not being able to lose weight. Because of this experience, I assumed that thyroid issues were insignificant and easy to control. I thought that once medication kicked in, 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 from overactive to underactive, were even worse.

Take it from me, being diagnosed and living 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.

Common Symptoms of a Thyroid Problem

The First Signs of Hyperthyroid

An overactive thyroid can start to show up in quite a few ways. In fact, you may feel perfectly 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 vision is off, 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 or flight stimulation caused by stress. And the really harmful thing is that it can cause your heart to work too fast.

When I was diagnosed with Graves' disease, another word for hyperthyroidism, I was told in no uncertain terms to go home, sit down, and stay put until the prescribed tablets kick in. Why? Because if I had an accident and needed surgery, it could kill me. Not such an easygoing illness now, is it?

The Danger of Misdiagnosing Hypothyroid

On the other end of the scale, hypothyroidism is when you haven’t got enough of the hormone in your body. According to doctors, this is much easier to control and sort out than if it's 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.

According to a book that I've read on the subject, there was a young girl who kept going to the doctor because she said she was ill. He diagnosed her with 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. Just 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 to 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 my face was so swollen, and my mind felt as though it was full of wool. Eventually, and 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 doctor and he discovered that my thyroid was dangerously low. He quickly changed my tablets. The stupid doctors, the specialist and all of them put together never 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?

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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 too 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.

Thyroid Complications

Menstruation

One of the most distressing side effects of thyroid disease has to be the slowing or stopping of menstruation. Even after medication, some women take months or even years to experience a normal cycle—and sadly, a few never see another period. Doctors have been known to blame this on early menopause, but that is debatable. If this has happened to you, make sure you get a second opinion and keep talking to your GP to find out exactly what is happening.

Hyperthyroid can make your periods much heavier, but strangely enough, it may also stop your periods—confusing stuff! Since hyperthyroidism makes everything go faster in your body, you would think that it would make your periods heavier. This is what happened to me. I would use up to two boxes of menstrual products a day when my thyroid was high. However, there are women who have commented on this article that have had hyperthyroidism stop their periods.

Additionally, both hypo and hyperthyroid can cause something called precocious puberty. This appears in children younger than ten years old who start their periods way before the right time.

I think the main point to be learned here is that both over and underactive thyroid disease have overlapping symptoms, and I think this is where the confusion stems from. If you are diagnosed with Graves' disease, it literally means that you have both hypo and hyperthyroid problems. I always like it to a seesaw—it goes up and down until you can balance it in the middle.

If you are experiencing menstrual complications, make sure your GP schedules you an appointment with a thyroid specialist. This is really important. Do not let the doctor fob you off with their opinion! You must see someone who specializes in this field.

Thyroid Eye Disease

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

What Your Doctor Doesn't Tell You About Medication

Now we get to the part that is really important. When you have been diagnosed, there are a number of different options for you to take such as tablets, radioactive tablets, and surgery. Your doctor will recommend the best one for you depending on how bad your symptoms are.

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 themselves, so they are just doing it by the book. But, everybody reacts to medication differently.

I was given a set of tablets called Carbimazole. 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 like 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 when I called the doctor, and they gave me painkillers not knowing why I was suffering like this.

I was admitted to the 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 Carbimazole, and when I told the doctor, he sat there, looked through his medical book, and finally decided to change my tablets! I actually told him the ones that I wanted, and after that, the pain went away!

What to Do When You Are Diagnosed With Thyroid Disease

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 assume that your doctor knows about thyroid illness. They may have training, but they may not know how it actually feels. Apart from that, a thyroid illness has many symptoms—some very subtle and others more obvious. A doctor will learn the basics and know what to look out for, but everybody is different. It's one of those illnesses that has so many different side effects, aches, and pains. Unless you suffer from it, you will not truly know. It's not something that can be fully understood if not experienced. 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.

That’s where a good 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 you are looking for. If you buy a book, then it's all right there for you. All you have to do is flick through the chapters.

Take Charge

Take this illness into your own hands. It's 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. If you are told that you may have to take a radiation tablet, make sure that you ask as many questions as you need to know. It's 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. That said, it's not strong enough to cause you any problems. It has been used for years. But you must be careful hugging people and refraining from close contact for a few days.

Write Down This Thyroid Checklist

Take note of the list below and stick it on your wall. 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—they are 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 to the doctor fast.
6. Check your hands for the shakes—it's one of the best signs of overactivity.
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 doctor. Your thyroid is too low.
9. If you start to get wobbly vision, get checked out again. Some of the symptoms can either be too high or too low since 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 doctor 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!

References

• Rosenthal, M. Sara (2009). The Thyroid Sourcebook.
• The American Thyroid Association

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Questions & Answers

Question: I've had my bone density test and prior blood tests and I've had my gynecologist run more blood tests. They told me that I have a hyperactive thyroid and to see an endocrinologist. My appointment isn't until 8/9, the first available. Should I call UPMC concierge to get in sooner or is waiting until August ok?

Answer: I don't know what UPMC is as I am in England, but yes you need to get it seen to a soon as possible. A hyperactive thyroid or hyperthyroid can be dangerous. As I said in the article, it makes your heart beat much quicker, you can get the shakes and if it gets too high then your body will start to 'eat' itself. as my doctor put it. In other words, you will lose weight, and your body will turn on itself and cause all sorts of problems. And if you have an accident and need surgery it can kill! Of course, if you are only a little bit high then waiting is an option, but I personally wouldn't take the risk.

© 2012 Nell Rose

Comments

Nell Rose (author) from England on April 27, 2019:

Hi Melanee, that's awful! they should have given you something to take away some of the thyroid. I was was given a radioactive tablet that zapped it. made it low but as its easier to deal with low, I just take levothyroxine daily. hope you feel better soon.

Melanee1971 on April 26, 2019:

I first was diagnosed around 2006 with hyperthyroidism along with Graves Disease. I had lost an incredible amount of weight leaving me look like i was anorexic with my bones sticking out. I started having panic attacks and my mother always asked me why i would talk and use jerking motions with my body. I still had not gone to a doctor thinking i was just working alot of hours and i had cut out all soda and meat thinking that was why i lost so much weight.......it wasnt until i started losing my muscle capacity leaving me fall after so many steps. My mom noticed my eye bulging and went to a doctor to find i had graves and a very hyperthyroid. I was put on methimazole for years and in 2014 i stopped taking it. My levels were normal and my graves disease was dormant............well i just had bloodwork taken and i am once again hyper and graves is back. Ive been extremely agitated and have a very short fuse also getting headaches and my right eye which is affected from the graves disease is always feeling lile there is something on the side of my eye causing a blurr like feeling. I really dont even know how to explain it because i dont see blurry but like something us pressing against the side of my eye. Im also becoming a bundle of nerves and im usually a very calm and stress free person. I am going to start methimazole once again but im also going to try a gluten free diet. My biggest concern and fear is the bulging eye fetting worse.

Nell Rose (author) from England on August 03, 2018:

Hi Doris, good luck, I hope Mary answers you.

Doris James MizBejabbers from Beautiful South on August 03, 2018:

Mary, yes we do. Mine was removed in 2010. I tried to answer you privately, but apparently you are not a member or you aren't signed in the Hubpages. If you will register or sign in and email me through HP, I will discuss it with you. We both might learn something from each other.

Nell Rose (author) from England on August 03, 2018:

Hi Mary I am so sorry to hear that. I think you need to go back to your GP? Hopefully they can help you.

Mary Van Pelt on August 02, 2018:

I had both my thyroid glands removed no cancer it has been almost a year and my blood work is still no level. My last TSH was 17,5 so my dose if synthroid was upped to 100 mcg and i cant sleep and my joints ache and my vision is also affected. Does anyone gave this problem?

Nell Rose (author) from England on May 07, 2018:

Thanks Erika, I am so sorry you have Hyperthyroidism its a real pain and can be so scary. just make sure you take the meds and keep watching your face. sounds weird I know but it does show up on your face as it did mine good luck.

Erika on May 06, 2018:

This was very helpful I just got diagnosed with hyperthyroidism with a nodule on right side its scary and the symptoms I have are so scary! I also came down with guillian barre 20 wks preg another auto immune disorder and believe I developed hyperthyroidism after my baby its terrible but thanks good article

Nell Rose (author) from England on March 30, 2018:

Hi Sherri, its a nightmare isn't it? I am glad you figured it out. It totally annoys me that the thyroid and thyroid disease is completely ignored by the media, medical papers, and even doctors who only have half hour training! When are they going to realise that its a killer? take care.

Sherri Estrada on March 30, 2018:

My symptoms started with shaking hands could not sleep then I started getting severe hives all over. The Dr’s could not figure it out so I started researching everything that caused hives. I was on steroids for over a year until I read that hyperthyroidism could be the cause. I went to see a specislist and sure enough I was off the charts. I told her to remove it. After 3 days after surgery the hives were gone. I had total thyroid removal as I also had 4 large lumps.

Nell Rose (author) from England on December 14, 2017:

Thanks Miz, yes they can be a real pain, luckily most can be balanced after a while on the medication, thanks for reading.

Doris James MizBejabbers from Beautiful South on December 14, 2017:

I think I may have read this article before, but I went back and read it again. Thyroid problems can't be stressed too strongly.

vi on November 22, 2017:

Hello Nell,

Thank you for posting this, it was extremely helpful to find someone who is describing symptoms above and beyond of what other websites tell you for hyperthyroidism. My partner was diagnosed with hyperthyroid a week ago and has been so ill from medication, he is also really suffering from not being able to move at night, as soon at 8pm comes around his ability to move around goes out the door. He suffers alot from body pain and is just fed up with not being able to move around much, especially at night. He also experienced the same treatment of "heres your pills, now go home".

What book did you purchase to read up on thyroid disease, I would love to buy him the same book.

Thank you

Vi

Nell Rose (author) from England on August 03, 2017:

CC, this is what you told me two months ago.

'One of your symptoms needs to be switched over. When you have hyperthyroid menstryation slows or stops. You have it as increasing. Every medical site and dictums will tell you that it stops or slows'

As its not Hyper that causes it to slow down, but Graves which is hyper and hypo I never changed it!

Yes low thyroid which is part of Graves will do that and I will add that to the article. to be honest I forgot! I have written over 400 articles, and two books. also work full time, so it was a mistake. one question? why so angry? I didn't do it deliberately? I will change it now.

CC on August 03, 2017:

So, you won't change facts about something that is a Graves disease symptom? How so? How about making a note that your symptom of no periods is very rare.