When I was diagnosed with thyroid disease, I discovered that my local doctors knew nothing about it. This is what I learned on my own.
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
|Hyperthyroid (Overactive)||Hypothyroid (Underactive)|
poor skin elasticity
poor skin elasticity
shortness of breath
slow throught process
inability to sleep
inability to sleep
goitre (swelling of the neck)
slow or stopped menstruation
joint pain and muscle aches
altered vision like afterglow
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.
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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?
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.
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 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:
- See a doctor.
- Buy a book on subject.
- Change your tablets the second you feel ill or in pain.
- Keep nagging and phoning the specialist—they are the only one who can help. GPs are useless!
- Keep looking in the mirror. If your face gets skinny, fat or filled with watery sacks, get down to the doctor fast.
- Check your hands for the shakes—it's one of the best signs of overactivity.
- Check your heartbeat sitting down, running, and then sitting again, to see if it beats too fast, or changes normally.
- 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.
- 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.
- 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!
- 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
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:
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.
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.
Graves DOES slow down or stop menstruation. I know this for a fact because it's stopped mine. My endo tells me so as does my GP and every other legitimate site out there. The Mayo Clinic says so as well. Perhaps it did the opposite for you, but it's common knowledge that it stops or slows your periods. I have had Graves since December and have not had one period since November. I also have a few friends who have Graves and their periods stopped.
HYPO causes longer and more frequent periods. Very rarely is it hyper. So while it has happened for you, it's very rare that it happens for others as the majority of women with Graves have less frequent periods, lighter periods, or none at all. You are passing it off as a common symptom not uncommon, which is what it is. Perhaps a side note to it as it is mis-infromation to provide it as a regular symptom.
Also, Graves isn't another name for hyperthyroidism. Graves causes hyperthyroidism.
I appreciate your article and it's mostly informative, save for that glitch. I hope all who encounter Graves can get relief and get back to being themselves. We know it can take one down pretty hard.
Nell Rose (author) from England on July 20, 2017:
Thanks for reading Linda, good luck to you both and I am glad you found this helpful.
Linda Locke on July 20, 2017:
My youngest Daughter just diagnosed with Thyroid Cancer.
So.....I started googling thyroid....
I found out good info to help her, and info for me, as I have been diagnosed with hypothyroidism
Nell Rose (author) from England on July 14, 2017:
Thanks James, I am so sorry you are going through this. I would get a book and find out the alternatives to the medication. then go and tell your Doc that you won't take that other one purely because its hurting your body. I changed mine from Carbamazole to propotheracile and it worked! good luck!
James on July 13, 2017:
I agree with what you said to CC, i have never had problems with hair growth, thats for sure and have also had very extreme shoulder socket pains for months on end. I have also always had problems with zoning out. Not to sound horrible but i have never trusted doctors. So i quit taking the synthroid i was issued and my shoulder pain went away but that was about two months ago and my recent blood work says my level is low Again, he has increased my dose and im scared to take it due to my shoulder socket pain returning. What to do? YOUR AWSOME!
Nell Rose (author) from England on June 30, 2017:
Thanks Marcie, that is awful! Doctors get on my nerves with their misdiagnosis of Graves disease or hyper thyroid! I know how you feel. and how scary it must be. buy a book about it, it tells you more than a doctor will ever know. as I said in the article they only learn for a short time.trust yourself. and look in the mirror. your thyroid will show on your face. If you look normal then your thyroid is 'probably' normal, obviously get blood tests to make sure. If you look thin and your eyes poppy and sore then its too high, but and here's the danger, happened to me..., DON'T GO TOO LOW! its easy to take too much for too long meds. if your face looks puffy and water under the skin in pouches, yep me! then stop the tabs and get to the docs fast! the stupid docs HADN'T made me an appointment or told me about overdose too low! good luck!
Marcie on June 29, 2017:
Thank you for sharing your story! I was just diagnosed hyper about three weeks ago and have been trying to read as much as possible. It's been confusing and scary. The beta blocker has curbed the heart symptoms and helped bring back my appetite, but make me tired and a little woozy at times. My doctor too has told me to stay cool and no exercise for sure. I know it will get better with time after the best treatment source is figured out. I have a scan scheduled for next week. By the way, I think this has been going on some time to a lesser degree - started with heart palpitations and a lump in the throat feeling four years ago! Had two doctors try to convince me over multiple visits that it was anxiety even though I insisted it wasn't. It's only recently that the tremors and palpitations developed and I went to a new doc who caught it! Anyway, I ramble, thank you again for sharing! It's helped me a lot.
Nell Rose (author) from England on June 01, 2017:
Thanks Sarah, yes exactly! I am sorry to hear you suffered so much, its awful how doctors are useless where this is concerned! That's why I wrote about it, I think its terrible! thanks for reading.
Sarah on May 31, 2017:
I had an overactive thyroid for years and didn't no until I lost my baby and the hospital did tests, my heart rate was dangerously high and I had to stay in hospital. When I had gone to the doctors previous to this the doctors asked to see my arms and accused me of taking drugs because I looked that bad its a shame they chose to judge me rather than help me. Years later I've had a the whole thyroid removed and its still stressful as I have good days and bad days, and when I ask for a blood test it takes my doctors forever. But once you no the signs of when ur feeling high or low it yes easier to manage. Also !y eyes were really swollen and coming out of my sockets they have gone back to normal now but I have to wear glasses all the time as it did affect my vision. I think people need to be more aware of the disease! I never heard of it and had to do lot of research because the doctors wouldn't or couldn't explain what it was to me. Also this disease is hereditary
Nell Rose (author) from England on May 18, 2017:
Hi Anne, I am so sorry to hear you are going through this. I do think that maybe you need to higher your dose? I am on 100 every day, but got a bit to high so now on 75. it does take a while to settle down, and get the dosage right. keep on at them until they listen! its the only thing you can do. get a book read all of it, and even if it means arguing with the Docs then do it, okay? good luck.
Anne Gee on May 16, 2017:
Thanks Nell.. Had Hypothyroid. All what you was helpful. God bless you for the info. Am on Levothyroxine 50mg. Still having pains and cant stand cold environment and battling with weight gain too. Doc said its Reumatoid Arthritis before i went for thyroidectomy. Yet the crampy painful movement in my muscles (or veins) is unbearable. Had severe pains on the sole of my feet up to my hip right through my waist and back. Went for Physiotherapy (6 sessions) yet no relief on the sole. Went to see an Orthopaedic Surgeon. He gave me injection on the right sole of my foot saying everything will be alright. The pain is still there. (Called it Plantar Fasciis) Dont know if the thyroid is still at work.
Nell Rose (author) from England on May 12, 2017:
Hi Marie, oh my goodness! Yes that nearly happened to me! I went up to 19 ! I am sure you know what I mean. bloods should be around 6-8 and I was 19! once step away from a thyroid storm too! and that's my point! thank goodness I had a brilliant doctor who chased me up, yelled go home! sit down and do not move etc! yes we look like its anxiety with shaking hands and body, losing weight etc, I just wish someone, anyone, friend, family or someone at work would have pointed it out, as we wouldn't notice it as its part of the illness! how long ago was this Marie? are you still on beta blockers etc?
Marie on May 12, 2017:
I quite agree with Nell Rose. I ended up with only one week a month with no bleeding! Nightmare! And after having a TT I was OK for a while but became very hypothyroid, and instead of bleeding I had massive clots! Sorry if it is TMI but these are facts, actual experiences, not out of a medical book. Also, when I was overactive, I was sent by my GP to a psychiatric unit because he said I was suffering from anxiety neurosis. Missed the thyroid diagnosis completely, I ended up in hospital with Thyroid Storm, a life threatening condition requiring IV rehydration and Huge doses of antithyroid drugs plus beta blockers.
Nell Rose (author) from England on May 12, 2017:
Sorry CC but you are wrong. When you are hyperthyroid everything speeds up. Heart, hair growth etc. And one of the worse side effects, I know for a fact is your periods are a nightmare! they go on and on! happened to me! maybe for some people they stop, but all the people I interviewed said the same as me. As for saying I might want to fix that, this isn't a copy, made up or read article. its about me and what happened. I won't change facts. Thanks for reading, nell
CC on May 11, 2017:
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.
You might want to fix that.
Nell Rose (author) from England on March 02, 2017:
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!
Lindy on March 02, 2017:
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 (author) from England on February 27, 2017:
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.
Rukeya on February 27, 2017:
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 (author) from England on February 12, 2017:
Thanks Gillian, glad it was helpful.
Gillian Foley on February 12, 2017:
Your information is very help full as I have over active thyroid myself and I'm on neomercazole
cindi on February 01, 2017:
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 (author) from England on January 26, 2017:
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 on January 24, 2017:
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 (author) from England on January 24, 2017:
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 (author) from England on January 22, 2017:
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!
Lilyp on January 22, 2017:
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 (author) from England on January 12, 2017:
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.
Malissa Anderson on January 12, 2017:
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
Nell Rose (author) from England on January 05, 2017:
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!
Trina wallace on January 04, 2017:
What foods can you eat to gain weight after starting the medication for hyperthyroidism?
Nell Rose (author) from England on December 07, 2016:
Thank you Honest Person, I hope you feel well soon. It took me quite a while too, just rest and recuperate, and thanks again.
Honest person on December 07, 2016:
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 (author) from England on October 28, 2016:
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.
Jeanne Garner on October 28, 2016:
Thanks so much!! I have learned a lot!
Thank GOD for people like you!!
Nell Rose (author) from England on August 23, 2016:
Hi Desaray,don't worry too much, the name graves disease does sound scary doesn't it? but its literally just named after the guy who first got it. it just means that your thyroid can be a bit like a seesaw, goes up goes down etc. you just have to monitor it and make sure you take the right tablets. your body will take a while to settle but it will start to feel healthier after a few weeks. takes a while, but do not worry, and try to get enough rest if thats possible, you will feel tired, and then hyper, just try to balance yourself and drink lots of water, not caffeine and keep of mixing vitamins with your tablets okay? just make sure that you see your gp frequently to monitor your levels of thyroxine, good luck. :)
Desaray on August 23, 2016:
I just found out a month or so ago that I have hyperthyroid and possibly graves disease. I'm 29 and a mother of 2 little girls.
Nell Rose (author) from England on May 18, 2016:
Hi Micah, sorry to hear you think you have thyroid problems. Yes if your thyroid is too high it will make you more active, but, and this is a big but, if it gets too high your body will start to shake and you could end up in hospital with serious side effects! this is serious stuff. if its too low you will start to feel 'fuzzy' slow and maybe put on weight. just get a blood test, it can be easy controlled with just a tablet a day! easy! the reason why I had to take the iodine was that I was so high that it was dangerous, get it checked out early and you will be fine, don't worry.
Micah on May 16, 2016:
Im a bit unsure if whether i would take the radio active iodine , because of the symptoms of hypothyroid , i would rather be active one than the slower one. And my body just feel normal about it. I am so afraid that after the r.a.i there are some changes in me. Im 20 and still studying what would happen if im a hypothyroid now ? Slow thinker ? I cant. I just cant. I've been crying thru nights thinking of this. Can you give me advise ? Im glad i found this site. Hope you will respond.
Nell Rose (author) from England on January 23, 2016:
Thanks Larissa, yes it does doesn't it? luckily my thyroid seems under control now, and I hope yours is too, and thanks for reading, nell
Larissa Wilcox on January 21, 2016:
I have hyperthyroidism and possibly Graves' disease and I have the mental messed up stuff. So just keep in mind that just because you have hyper not hypo does not mean that isn't what's causing you to feel spaced out because it definitely will!
Nell Rose (author) from England on December 10, 2015:
Hi Cheryl, first of all, don't worry. Hyperthyroidism is pretty scary, but now they have found out that you are so high they will give you meds to sort it out. Its pretty easy, after a couple of days you will notice you're not shaking so much, and after about a week it will settle down. it does take time to get the meds just right, and it can be a bit of a seesaw time with them, too high, too low and so on, but you will soon get used to it and know your own body.
Two things to watch out for. One, make sure you watch how low thyroid it goes, if it goes too low it can be dangerous, see above, and second, if you need to swallow a radioactive tablet don't worry, it doesn't hurt, but you will have to let someone have your children for a couple of weeks just to be careful, I know its scary, but don't worry, it will be fine, glad they found out through blood work, the worse is over. of course you may get thyroid eyes for a while, not nice, you will look a bit strange, but wearing dark glasses will help. okay? if you need more info, just come back, okay, good luck, nell
Cheryl on December 10, 2015:
Thank you for this. I was diagnosed with hyperthyroidism 4 days ago. I went to see a Dr because my heart was pounding out of my chest and I was shaking terribly. My husband who is an RN came with me. The Dr prescribed Xanax and wasn't going to do blood work. My husband pushed the blood work and I'm so glad he did. I'm only 29 and a mother of 2 small children. I'm very scared of what the future holds for me.
Nell Rose (author) from England on August 24, 2015:
Thanks Linda, yes the docs never ever tell you anything about it! that's where books come in, its disgusting, thanks, nell
Linda Bilyeu from Orlando, FL on August 24, 2015:
Kudos to you, Nell for making others aware of this disorder. I hope your info helps many others.
Nell Rose (author) from England on July 12, 2015:
Hi Colleen, that must have been awful being young and not understanding what was going on with your body because of this illness, thanks so much for coming back and I am glad it was helpful to you, nell
Colleen Diemer from Florida on July 12, 2015:
Nell, It was a great pleasure. I wish everyone understood our struggle. You did an excellent job explaining it.Most of all the fact that no one talks about it and Dr.are incompetent in this field. Even the specialists.Maybe we can work to change that. You sure have already started and I commend you for it. I still have not told my story because of the shame attached to it. So much family trouble and going undiagnosed as well as misdiagnosed is an awful thing for a perfect young child with a bright beautiful mind.I know you understand.Reading your story I feel I have a friend for sure. Thank you for not giving up your fight and writing your article to help others. Colleen
Nell Rose (author) from England on July 12, 2015:
Thanks Colleen, glad to help, and thanks for reading, nell
Colleen Diemer from Florida on July 09, 2015:
Loved this article. With my own personal experience I had to read it. Great job.
Nell Rose (author) from England on June 26, 2015:
Hiya mary, that's so true, they don't know hardly anything at all about thyroid problems its pretty scary if you ask me, thanks
Mary Craig from New York on June 24, 2015:
Excellent information Nell! You've certainly warned people about what to look for and what to ask at the doctors. We sometimes attribute super powers to doctors and that just isn't so!
Voted up, useful, awesome, and interesting.
Nell Rose (author) from England on May 04, 2015:
Hi pmc, great to see you! thanks so much for reading, and I am glad it helped you, thanks, nell
pmccray on May 02, 2015:
Hey Nell: thank you for authoring