Can you cure Graves? -The Rush for Permanent Solutions

This is a question I hear a lot online,from all over the world. People get their thyroid killed off with RAI (radioactive iodine) or thyroidectomy to remove the thyroid and their doctors tell them they are ‘cured’.

Beware any doctor that tells you that removal of your thyroid is going to ‘cure’ you of your autoimmune disease. All it does it remove the main target of the messed up immune system. You can still bear the brunt of the immune system being out of whack for the rest of your life. If you have a doctor that tells you as soon as the thyroid is removed or killed off that you are cured, run to get a new doctor.

For instance, one of the common things that happens is that the immune system also attacks the eyes (this sometimes happens in Hashimoto’s in rare cases as well). Graves’ eye disease or Thyroid Eye Disease (TED)as it’s also known,  can happen with or without your thyroid being intact. It is known to be made worse in many instances when someone chooses RAI to kill off their thyroid. The RAI can actually exacerbate the eyes and make TED flare up, or get worse.

Even surgery does not always eliminate the risk for TED. There is currently no way to make sure every single thyroid cell is removed during surgery. There is some chance that some of the tissue can grow back. I am one that had RAI back in 2001, when they did the ultrasound a year later, all of the thyroid tissue was dead, no thyroid tissue living. I had another ultrasound two years ago and they detected that 1% of my thyroid had grown back. I’ve talked with several people over the years who had total thyroidectomy or partial thyroidectomy and a few years later some of it has grown back.

Now days most doctors will want you to try anti-thyroid medication first to see if they can control the thyroid levels that way. They may also advise you to change your diet to help control inflammation and antibodies. There is a small number of people who have gone that route, who have also achieved remission for months or years. Remission is  where their Graves’ antibodies have all but disappeared. Other people haven’t achieved remission, but have been able to keep their disease safely under control for quite a long time, in some cases years. Most people, if they are able, will want to see if they can go this route instead of jumping right to a permanent solution of RAI or thyroidectomy.

There comes a time in many people’s treatment where anti-thyroid drugs are either not working or are causing problems with a person. When someone is unable to control their Graves’ disease with anti-thyroid drugs, it is time then to consider a permanent solution. Especially with Graves’ disease, if it becomes uncontrolled, it can cause heart problems, stroke or even thyroid storm (a deadly situation that can and has killed people). Then you need to carefully consider which option you want to take to take care of your thyroid so it can no longer overproduce thyroid hormones. This is an individual choice, as RAI is something that works better for some and surgery is a better option for others. Research both if you are at this point and weigh the pros and cons of each before making a decision.

Once your thyroid is gone, then the work will really begin. You will have to monitor your thyroid levels for the rest of your life. Even without a thyroid your levels can be still affected by medication, stress and other lifestyle choices. You will have to really start watching your body to find out what your “new normal” is going to be. New Normal being where you feel at your best post thyroid.

There is a lot of information out there for us thyroid people, even if our doctors don’t always seem to know it. Do your homework and don’t be afraid to talk to people online who have been where you are. Others can share their experiences and give you an idea of what your best options may be. Just remember the cardinal rule, if they say they can cure you, keep on going. Good luck in your thyroid journey!


Our Friend TED (Thyroid Eye Disease)

What is TED? It stands for Thyroid Eye Disease, also known as Graves’ Eye Disease. It usually happens more frequently to people who have Graves’ disease antibodies, but it can also attack people with Hashitoxicosis, hypothyroidism and Hashimoto’s Disease. So what is it? It’s defined as an auto-immune disease of the eye socket and muscles surrounding the eye. Simple definition right? Unfortunately for the people who suffer from it, it can go from annoying to excruciating in effects.

In the early stages, it can be an irritation. Starting out feeling like there is something in the eye making it irritated and red. The tear ducts may cause the eyes to be either “wet” or “dry”, either too much tears lubricating the eye or too little, and this can happen near the same time to the same person. The immune system may make the eyelids swell up and start to look like there are really bad bags under the eyes, or major puffiness.Extra spots in the eye or minor vision problems may come and go.

Next it starts to make the eyes look like they are going to pop out, like they are bulging out a little or a lot. Double vision and major blurriness shows up to make seeing difficult. Pressure starts to build making the eyes ache. The upper eyelid can retract, making the eyes look even more bulging out and make the person look startled. People also often become extremely light sensitive.

When it’s at it’s worse, it will push the eye forward due to swelling in the eye muscles. It can make the sufferer unable to properly close their eyes, which makes lubrication of the eye a problem and can have a side effect of producing a corneal ulcer. If a person has severe redness, pain in the eye, diminished ability to see, color vision becoming abnormal, get to an eye doctor who is familiar with Graves’ Eye disease or TED, this needs to be treated asap so it doesn’t cause permanent vision loss. The muscles can also start to scar leading to other issues with vision and how the eyes look to everyone else. This is when surgery to correct this may be brought up.

The inflammation period of TED can last up to 3 years. During this time most eye doctors and eye surgeons will not perform surgery as more inflammation could bring a patient right back to where they were before the surgery, to correct the eyes. Lubricants, eye lid taping at night, steroids and other medical methods are use to alleviate the worst of the issues. There has also been some evidence showing that taking Selenium 200mcg a day can halt or slow down the inflammation and damage of TED to the eyes.

If you have thyroid disease and you suspect that you may have signs of Thyroid Eye Disease (TED), consult an eye doctor or ocular surgeon, who knows how to deal with signs of thyroid eye disease. Even if you do not have signs of this, it is a good idea to get your eyes checked once a year and measured to make sure that your eyes have not changed from  year to year.

10 Positive Things I’ve Learned From Having Thyroid Disease

While thyroid disease isn’t fun in a lot of ways, it’s a life changer for sure. Not all of those changes are bad if you don’t want them to be. Here’s my top ten things I’ve learned or discovered that were good things from having Graves’ disease.

  1. Don’t take your health for granted.  Gone are the days when I dismiss my symptoms and try to work through them to the point of being very ill. Which leads me to..
  2. I know my own body. I now know my own body better than most people. I know if what I’m feeling means I’m coming up with a cold, allergies or if my thyroid levels are a little off and it helps me react accordingly.
  3. Priorities are made more clear. My priorities have been made very plain to me. No longer do I just do something that I don’t want to do solely to please others unless it is what I want as well. If I attend a party, it’s because I want to. I don’t have so much extra energy anymore I can waste it on things that do not matter to me. This is a great gift to give yourself, it helps you clear up a lot of clutter in your life.
  4. I have become my own advocate for my health. Since I spent so long being misdiagnosed and then afterwards saw so many doctors who knew less than me about my own disease, I have learned to speak up. I have learned it is ok to question your doctor, find out WHY they want to do or not do a certain thing in my treatment. It is my body and I have to speak up for it’s health.
  5.  Research skills have improved. I have learned how to do research on medical matters. Learning how to pick out the hype and patently wrong information that is out there, from the partially correct, and the spot on medical information out there is something I’ve become better at. There is a lot of good information, and there is a lot of crap out there. Learning how to spot things that could be dangerous if you follow them is very valuable. It hones your critical thinking skills to the maximum.
  6. No matter what is thrown at me, I’m still here. I have learned that if something hasn’t killed me, it really has made me stronger. I have been through a lot of health emergencies, including an allergic reaction that put me into shock and almost killed me. I have survived them all. I am stronger than I realize and I now know to keep reminding myself of that when bad times hit.
  7. Everything will eventually pass.  Maybe it only passes for a short time, maybe a long time, but nothing lasts forever. That applies to positive and negative experiences. The thyroid disease may go on, but you won’t have every single day be bad. This also helps me to try to hold on to the good that happens and cherish it before it goes as well.
  8. Relationships change and that is ok. I have learned who is a true friend, who really cares about me, by who has stuck by me when my health has been at the worst. When my thyroid has made me deal with Graves’ rage, irritability temporarily and people have still stuck by me, knowing that it would pass, that means something. I have developed loyalty to those who have stayed by me and support me through whatever happens. Some of them will read this, you know who you are. I don’t have fair weather friends anymore, and I don’t have family who doesn’t know how to be family to me. The people I surround myself with me are loyal, honest and caring people and I am very thankful for that lesson.
  9. Growing up was a must. I had to learn how to take care of myself, only accept responsibilities I was sure I could follow through on, and learn how to deal with all situations as an adult. I can’t afford to sit around and whine or cry all the time and do nothing. I have to take matters in my own hands and find ways to deal with them. This has made me search for answers when before the diagnosis I would not have. I have created a better life for myself.
  10. New Experiences. I would never have thought to start a thyroid support group, or website, or a blog before this. I would never have been motivated to reach out to people in several different states in the US and countries around the world to find out how others are dealing with their thyroid disease. Having thyroid disease has broadened my world, and made me more understanding and compassionate of my fellow human being. That is a great gift for anyone!

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Scary side of Hyperthyroidism-Thyroid storm

The more I speak to other people about thyroid disease, and Graves’ disease specifically, the more I realize too few people know about this dangerous issue that can come up with Graves’ disease and hyperthyroidism. Most of the time thyroid disease if managed, can cause a lot of issues with your health, most of the time it’s not going to have you in danger of dying immediately. Thyroid storm is one of those exceptions. Medline plus defines thyroid storm as “Thyroid storm is a life-threatening condition that develops in cases of untreated thyrotoxicosis (hyperthyroidism, or overactive thyroid).”

Great definition there. Except it doesn’t tell you what it can cost people. After speaking to several people who have gone thru a storm, I am finding out what the real cost can be.  Modern gives us some scary stats: “Only 1% – 2% of people with hyperthyroidism will develop TS, but the mortality rate for patients with untreated TS ranges from 50% – 90%. With early intervention, mortality drops to less than 20%.”  Now THAT is cause for concern. Latest estimates on how many people have hyperthyroidism is about 1% of the population. Population of the world is about 7 Billion, so 1% is 7 million so 2% of that still leaves a possible 1.4 MILLION people at risk of thyroid storm.

So, you are someone with Graves’ disease or hyperthyroidism. What should you be aware of for this condition, so you can get help in the event that it does happen to you? Here’s the various symptoms you will have:

  1. Tachycardia, heart pounding extremely hard
  2. Shaking
  3. Extreme sweating
  4. Unable to get your breath properly
  5. weakness
  6. Very restless, can’t sit still at all suddenly
  7. Body temperature will start going up
  8. Agitation, very angry suddenly for no reason, unable to settle down, anxiety
  9. Confusion
  10. Loss of consciousness
  11. Sudden Diarrhea
  12. Chest pain
  13. Heart problems
  14. Death

Some of the things that can lead to a thyroid storm can be; Graves’ disease pushing your thyroid levels too high, over medication of thyroid hormones when you are not being  monitored correctly, treatment with RAI (radioactive iodine), severe infection in a person with hyperthyroidism and medical stressors such as a heart attack. If you have hyperthyroidism, make sure you keep these symptoms above in mind, if they come up, get to the ER and tell them you suspect thyroid storm. Several people on the thyroid boards have reported that a parent with Graves’ disease died or had permanent heart conditions after going through a thyroid storm that went untreated.

If you have Graves’ disease and/or hyperthyroidism. Always make sure you keep your appointments for labs and doctor visits. Keep on top of your levels and if they give you anti-thyroid medication, TAKE IT. Many people decide not to take their anti-thyroid medicine because they start gaining some weight back they lost with hyperthyroidism untreated. Please do not do this. One of the Graves’ disease groups I am a member in, lost a member last year. Her daughter came in earlier this year and told us that her mother who was age 42 had died. She didn’t take treating her Graves’ disease seriously and frequently skipped her anti-thyroid meds. By the time she decided maybe she should take it seriously, that is when she had thyroid storm. She made it through the storm, but the resulting damage to her heart caused her to have a heart attack and die shortly afterwards. Do not be that person who leaves behind their family because they did not take their illness seriously.

If you can take care of yourself, be mindful of your symptoms and your thyroid levels, you can manage your hyperthyroidism and Graves’ disease quite well. There are many dietary paths you can take to help calm your system down somewhat, and various techniques to keep your levels where they need to be.

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I can’t be gaining weight, my thyroid levels are hyper!

One of the many fun things about Graves’ disease is changes in weight. Probably 75% of people who are hyperthyroid start losing weight. When you are hyper your body goes into overdrive. Everything speeds up, including your metabolism and for a lot of us, also our appetite. Some of us have our appetite rev up higher than our metabolism is burning calories. So for some lucky people with Graves’ disease, we gain weight. Sometimes it’s only a few pounds, and sometimes you are like I was, gaining over 100 pounds in a six month period. When I was first diagnosed with Graves’ I was told that I must be doing something wrong, I was exercising, eating healthy and very few calories and still gaining twenty pounds a month or more until my RAI and subsequent going hypothyroid. After I went hypothyroid, which is when most people start gaining weight, I actually lost some of what I’d gained, but not even close to all of it.

The more I talk to other Graves’ disease patients online, the more I find I am not alone. About 10-25% of people who are hyperthyroid gain weight. Doctors are not sure why. Once you go into normal thyroid levels or into hypothyroidism it becomes harder to lose the weight you put on. Mary Shomon-in Thyroid Diet Secrets, who is a noted thyroid expert, explains that sometimes when we have a thyroid problem, our bodies can more easily go into what is called “hoard” mode, where your body doesn’t think you are getting enough calories to maintain your metabolism, so despite being overweight, your body won’t let you lose weight. So when the person tries to restrict their calories to too low, their body rebels and does everything to make sure the pounds won’t come off.

I’ve come across this many times in the various thyroid and Graves’ disease support groups I’ve been an admin in online. The poor person is already mourning the loss of their old self and then you have body images to contend with because you are no longer the size you used to be.

Just as devastating is the person who goes the typical way and loses a huge amount of weight. Those  people will sometimes get insensitive remarks about how thin they are, and then have to contend sometimes with muscle wasting issues, lack of energy and inability to move around much as they have grown so weak.

Whether Graves’ has made you gain way too much or too little, it’s a terrible thing to a person’s self image. My recommendations are to first find a good counselor to help you with body image issues caused by thyroid disease, someone who is somewhat knowledgeable and knows that it’s not “all in  your head”, and can give you tips to cope with this new you. Second, is to work with your doctors and other health care professionals to try to get your thyroid levels as optimized  as possible so you feel the best you can. Then when those two are in motion, you can try various dietary and lifestyle changes to see what will help you control your weight the best.

There are many different paths to helping you overcome weight issues, whether it be a need to gain weight or a need to lose weight. This isn’t a one sized fits all disease, so sometimes you have to find what has worked for others and see if it will work for you. The most common things dietary paths tried that I’ve seen are the following…

-Low Glycemic index diet (eating like a diabetic), controlling blood sugar levels so they are more stable has helped many people  stabilize their weight as well. Examples are South Beach Diet (phase 2)

-Gluten free. Some people with Graves’ and other autoimmune issues develop Celiacs which makes a person have many issues when they consume gluten containing products, some people have success controlling their weight and other health issues by going gluten free.

-Anti-Inflammatory diets, there are several anti-inflammatory diets, some are explained here. Some people feel better when they eat less foods that cause inflammation.

-Paleo diet- recently a few have tried the paleo diet and have had some success with this.

Just remember, always check with your doctor before starting any diet or lifestyle change, what works for one doesn’t always work for everyone, and a diet may have to be modified to work with your health conditions. For example, I tried the gluten free diet and it made me feel a lot worse, but eating like a diabetic ended up helping me lose about 30 pounds and control my fatigue. I know another person who doesn’t seem to be bothered by sugars, but if she eats anything with gluten, she’s miserable for days. We are all different and sometimes we have to try multiple things to figure out which one works best for us.

Lastly,  it’s important to make sure your nutritional needs are being met. Once a year at least, I’d recommend getting these tested: Vitamin D, calcium, potassium, magnesium and if you have Hashimoto’s disease have them check your iodine levels as well. Many people with autoimmune thyroid disorders can become low on various nutrients and that can also hinder your ability to control your weight and feel your best.

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Radioactive Iodine treatment and Zombie thyroids

I got RAI (radioactive Iodine) to kill off my thyroid due to Graves’ disease in 2001, I think February of that year if I remember correctly. I went from hyper thyroid to hypo in less than 3 weeks. They did an ultrasound after six weeks and there was no living tissue. So, for the last several years my only source of thyroid hormone has been a thyroid supplement medicine. I’ve been having fun playing tag with my thyroid levels. They put me on one dose, six months later they test me and I’ve gone into hypo ranges, so they bump me up. Six months later I’m normal. YAY! Then six months after that I go hyper, so they bump my dose down. Sometimes I have felt like a human yoyo. I have no thyroid so why would my levels go up and down so much?

What they didn’t tell me, but what I’ve figured out, is when you have a working thyroid, your body usually does a great job of figuring out how much thyroid hormone you need. Extra amounts of stress currently? Then it pumps out a little more to help you cope? Been sick? Then it pumps out a little more to help you heal. Things going fairly smooth and calm? Then it sends out a little less.

So what happens if you have no thyroid at all to regulate things? Then you enter the Guessing Game. Your doctor guesses how much average thyroid hormone you are going to need, sometimes based on labs and usually also based on your weight. Sometimes the guess is good and you don’t need your labs adjusted. Some people never vary much so they stay on one medicine and do really well. Others (like me) the Guessing Game fails. Say for instance your doctor puts you on 137mcg of thyroid hormone daily. Now say that over the month you average one week needing about 140mcg a day, next week you need 125mcg daily, the next week is stressful and you really need 150mcg daily and the fourth week is also bad and you need 140mcg. This whole time though you are going along taking your 137mcg. You add what you actually needed during that month divide by four weeks and you get an average of 138.75mcg is what you needed for the month. Not a huge difference from 137mcg, right? Well thyroid is a very sensitive thing and it doesn’t take much to throw you off. Now you average needing more than you’re getting for five, six months and your thyroid levels aren’t enough to keep you going. Then you start going into hypo thyroid ranges. All the sudden you are tired, muscle fatigued, brain fog where it’s hard to concentrate, your skin and hair start suffering and so do other parts of your body. Go on too long and it gets worse and can affect everything. Just the same if you start averaging needing a lot less than what you are on, then you can gradually start going hyperthyroid and your entire body gradually speeds up until it’s going 100mph.

Not a good scenario, either one. This is the world I’ve been living in since 2001. If I’m really lucky they guess right and no major body changes to need more or less for several months. I’ve gone as long as 12 months without needing a dose change in the last several years.

So that’s the pattern I’ve had forever. Thyroid goes into hyper, lower the dose, a few months later back to normal, and on and on.

This year was a little different. I kept going more and more towards hyper. So doctor did what she always does and lowered my thyroid medicine. Went back four months later for a checkup. My thyroid levels went UP. How is this possible when my thyroid is supposed to be dead and as of 5 years ago when they did the last ultrasound it was all still dead. So we do another ultrasound, I have now some regrowth of thyroid tissue. You know doctors almost never tell you this can happen? Right now I’m waiting to figure out how much of this regrowth is affecting my current thyroid levels. Is it pumping out a lot of hormone? A small amount? Will I need to reduce my dose again? The Zombie thyroid has struck and I am no longer safe in the knowledge that it can’t torment me. Stay tuned as I find out in the next month what this all means.

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Life on the roller coaster called Thyroid Disease

Many years ago, when I got out of college (B.S. in Financial Planning/Counseling) and started to work a “real” job. I found after a year or so in my career as a brand new stockbroker in a call center that I was suddenly having all sorts of weird health issues cropping up.

First I started steadily gaining weight, and I attributed that to being out of college and not walking everywhere. Then I started having problems with horrible anxiety, which I attributed to the stockbroker job I was in. Then hair started falling out. Finally I stopped sleeping. We’re not talking regular insomnia, not sleeping for a few nights here and there. I actually stopped sleeping. I went to just 3 or 4 hours a night for several weeks, then it went to 1 to 2 hours a night. Went to doctor, let them know. My grandfather had just passed away so they thought maybe grief. So on sleeping pills I went. Still not sleeping after a week. So up the dose. Still not sleeping the next week, so switch to a new pill, sleeping even worse. Finally after about a month they thought to test my thyroid. Found out my thyroid levels were off the charts they said high. Sent me to an endocrinologist and diagnosis: Graves’ disease. I had never heard of this. Graves’ disease sounds like a super scary death disease. So I am a crazy person, no sleep, anxious, still gaining weight, hair falling out, skin super dry, heart rate going very high, blood pressure going very high. I’m sure people thought I must be on meth at the time.

First they started me on anti-thyroid meds. I tried a couple of different doses and medicines and after two months my levels were still steadily climbing. The doctors were worried about heart attack or stroke. I couldn’t work, I voluntarily gave up my car keys and I was living with a boyfriend who was only home on the weekends and worked in another state. I had one friend at the time who was willing to come by and try to help me stay sane. My nickname at the time was “Babbling Britney” as I couldn’t stop myself from babbling on endlessly. I also was trying to emulate a Mexican Jumping bean as I couldn’t sit still longer than a minute or two.  I was annoying the crap out of everyone and especially myself. If I could have done the body jumping I so would have at that time.

Finally we talked about permanent options as the medicines just weren’t working. I asked about surgical removal, they told me it was at that time too risky (now it’s not nearly as risky as it was in 2000). So I went with RAI, radioactive Iodine, with the theory that your thyroid absorbs iodine and the rest of  your body just eliminates it after a few days. You take this pill that a person all covered up in protective gear gives you out of a lead container, and then you avoid other people for 3-6 days, including using your own utensils and other fun things. No, I checked, I did not glow in the dark!
This process is supposed to gradually kill off your thyroid slowly. Except of course if you are a freak like I am, and then you go from alive thyroid, super hyper, and fast running, to in a short time of just two or three weeks thyroid is completely dead and producing exactly nothing. Think about your body being a race car going 100 mph that suddenly hits a brick wall and you’ll know about what happened to me. I went from wired and tired, super nervous energy, heart racing, insomnia and anxiety Queen down to making a sloth look active pretty quickly.

They tell me, no dietary changes, just take this pill and everything will be fine. Um, in my case they lied. I’ve had this diagnosis since the  year 2000 and RAI in early 2001 and my life has NEVER been the same. I have been doing research for as long as I can remember having this disease and I am hoping to pass on what I’ve learned to you all reading this. First of all, if you are diagnosed with thyroid disease, your life WILL be different. Even if you are one of the lucky ones who take a pill and are back to normal, you still will have to keep your thyroid levels in mind the rest of your life. However, you can learn to manage things and eventually you will learn your body so well, that you will end up being more proactive than anyone else you know. This is a journey that will take you to places emotionally and mentally and sometimes physically you never thought possible. Everyone who is diagnosed needs to give themselves time to absorb the info and then to grieve their old self. Then they can get on with the new adventure.

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