About a year and a half ago I was diagnosed with Graves Disease. What that means is that my thyroid was pumping out hormones so fast that it was uncontrollable.
Prior to being told this I never knew what a thyroid did or what it's purpose was. Once it was explained to me, I began to understand the numerous strange things I could not explain.
You see what drove me to see the doctor was a few different things that just began to click in my mind. I paid attention to what I ate, but eating McDonald's two or three times a week did begin to seem unusual.
Then I noticed that if I was on my feet for a half hour or more I would get faint, sometimes even throwing up. I also got hot all the time. I could walk outside in the dead of winter without a jacket. Not for a long time but still. So I went to the doctor.
He performed a test and when the blood results came back it looked like every hormone possible was out of whack in one way or the other. It was simply unbelievable.
At least now we knew what we needed to begin treatment. How do you treat a thyroid gone wild you ask? Well this is how.
I needed to see a specialist. They no longer cut out your thyroid but instead treat it with radiation. It begins like this.
They hold this machine to your neck for 10 minutes or so. You have to sit as still as possible for it to be effective.
Once it’s completed, they give you a very low dose of radiation to see how much of it is absorbed by your thyroid. This takes 24 hours though so you go home and come back the next day.
The next day they hold that machine to your neck again and can tell how much of the radiation was absorbed into your thyroid. This let’s them determine how much or how little you need.
Mine absorbed a shocking 76.7% of the radiation, which the doctor had never seen in all of his years of doing this. Off the charts to say the least. Then they take you for an X-ray of sorts and see the size of your thyroid.
Mine turned out to be two to three times the normal size. It was because of all this that I needed only a low dose of radiation.
How do you take radiation though? Well in this case it was through a straw. Yeah that's right you drink radioactive liquid.
After three days, you cannot be around people, babies, or small animals. I could have actually hurt babies or small animals if they got near me. That is freaky to think about!
I also had to eat all my meals off of paper or plastic products because the radiation comes out through your saliva glands. I had to sleep on the couch while my wife slept in the bed so wouldn't harm her. You think it ends there right? Nope!
Now that they have treated my thyroid, I still needed to get those hormones the body normally produces. if the doctors did their job right you should not have a thyroid gland anymore and so begins the hormone replacement pills.
They put you on a dosage, you take it for a month, and then go back to the doctor for more blood work. They then decide if it is correct based on your hormone levels. This can take a while.
The worst part is once they think they have it, well your levels can still get thrown off over time. The biggest frustration is I have put on 50 pounds and nothing I do makes a lasting impact.
Until they get my TSH hormone correct (still a work in progress to this day) I am going to struggle with some weight gain. Now it appears to have plateaued at least but I would like to lose it.
So there it is folks. I am writing this because nobody really understands what a thyroid disease can do to you. I know I sure didn't until having gone through this mess. Just info I wanted to share.
Does this disease sound similar to any other disease you've heard or known someone who has it? What do you think the hardest part of having a life threatening disease is?
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Comments (7)
There's a lot of thyroid disease in my family. Some of us have low thyroid, some of us have high thyroid, some of us have autoimmune thyroid disease. My uncle had to do the same "radioactive milkshake" thing that you did after having a thyroid storm. Myself, I'm just slightly low thyroid, so it's not life-threatening in my case.
I don't know about having a life-threatening disease, but chronic disease states suck.
I have hypothyroidism. I just got my med changed to .088mg. Over 3x what I was taking before. I have been taking the new dose for 2wks but my DR said it could take up to 4wks to feel any changes. I can't wait, because I feel tired and lack energy ALL the time no matter how much rest I get. I was diagnosed with this a year after I had my daughter ( almost 3yrs ago ). I have to go back in 6wks to get more bloodwork done to see if it's the right dose or if they need to up it again. It's frustrating at times, because I will always have to start my day off with this pill. Not to mention having to wait an hour after I take it to eat something.
For me the hardest thing would be making everyone else understand why I'm not going to put myself through treatment. I mean, I guess if it was on my own dime, maybe I would, as long as it wasn't cancer (treatment is way too expensive.. screw that), but anytime in the near future, it would be my parents' money, and so I would rather die cheaply than prolong it with medication and then eventually die anyway. In theory, my mom is okay with this. In practice, probably not.
I have enough chronic issues to make my world go 'round for now anyways..
I feel like having hypothyroidism is about the least of my worries right now. So what I have to take a pill every morning for it? At least people don't blame it all on being "weak" or "emotional". It's just simply one more pill that I have to take anyway. And the least costly one at that.
My Mom is always tired, sleeps 18 hours a day, has gained weight, she's always freezing even when it's 90 in her place. The DR has her on meds but, I don't know why it isn't working. I read up on this and if a certain blood test comes back almost normal for T3 and T4, it could mean it's related to the pituitary gland. Then, you need a special test - a TRH test because the initial test could be misleading. I suggest that if you have a problem with this, go to
WebMd.com They have very helpful articles about this and it might help. Having this condition for a long period of time can cause heart problems and it needs to be looked into thoroughly.
Hope this helps.
Steve
Thyroid disease runs in my family.
My mum had glands removed when she was 17 and now she's got lumps in her neck, that can be felt when you touch.
She has to keep checking them just to make sure they don't get cancerous and such.
I had to get a blood test done coz my doctor noticed my thyroid looked a lil bigger than normal.
It was normal though.
My mum's thyroid was just overactive- she could somethign the size of a buffalo and still weigh about 110 lbs.
Now with age & early menopause though it's not that easy- she gains & loses weight really quickly though.
In case there is anyone else reading this who has this but hasn't had treatment yet ---- know that there is another way to treat a thyroid that is affected by Graves that actually works on the immune part too. (radiation only makes that part worse). It's called ATD meds. My son was told he'd never be cured from Graves using ATD meds, but I found another doc who put him on them for 3 years and he's now back to normal totally. He hasn't taken any meds in years.
I was dx'd not long after him, and have been on low dose ATD meds (low dose because I am sensitive to meds) 2 years now and am almost in remission too. My antibodies are going away.
I'm sorry you had somany problems with gaining weight, etc. My sister is also in that same boat (radiation for thyroid cancer). I wish her doctors could find out why she's gaining too. ;(