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  • judy
    Participant
    Post count: 20

    Hi Diane
    I have had graves disease for 5 years to.. I have had 2 treatments of RAI
    Why did you have RAI then surgery?
    I thought once the RAI destroyes the thyroid thats it??
    Can your thyroid come back alive??
    I still don’t understand graves disease?? <img decoding=:” title=”Question” />

    grneyeladydi
    Participant
    Post count: 16

    Hello board,

    It’s been a very long time since I have posted anything. This is year 5 of being finally diagnosed with Graves. So far as most of you know I have had thyroid surgery and RAI. My thyroid is still with me kicking me in the butt. I’m back taking meds for being hyper. My doctor wants to wait three more months before deciding what’s next with me. Oh Yippee I am one of the lucky ones with TED. Like my thyroid, I’ve had surgery and radiation. Again, it’s back giving me a run for my money. I recently had a CT of the orbits and will see my doctor next week to discuss what’s next with that. My heart, well it’s still thinks it’s a race car and searching for the finish line. It continues to go very fast even with the 200mg of toprol xl I take per day. Muscles ache, tired, lack of sleep. All these things we all can relate to. Does anyone know of any wizard or fairy that could wave their wand over me to make this all go away? I’m so frustrated with this leading me to be more depressed. I guess I just needed to vent today. Thank you all for letting me get this off my chest.

    Diane

    grneyeladydi
    Participant
    Post count: 16

    Hi Judy……sorry, I had surgery and my thyroid grew back in 6 months, then I had the RAI and a year later the darn thing is still hanging around making me crazy. HA HA HA I don’t think any of us will truly know all about Graves Disease.

    DianneW
    Participant
    Post count: 292

    Hi Diane,

    I’ve been wondering how you’re doing! I can’t believe that thyroid of yours is still hanging in there! It’s like the cat with nine lives, only more so! Now, let’s just hope your heart is as tough as your thyroid is.

    I can’t even imagine how frustrated you must be, but I admire you for your strength in the face of all this. For those who don’t know, Diane has a really bad case of Graves’ Ophthalmopathy as well as a crazy thyroid that won’t die, and the eye disease is as persistent as her thyroid disease. It’s difficult to take care of the eyes without being able to stabilize her thyroid, so she’s been living for a long time with some very difficult problems.

    Diane, I sure wish I had that magic wand. If so, I’d sure use it on YOU.

    Sending love and warm wishes your way, and when you get through this AND YOU WILL, you can tell the rest of us how you coped so well. You ARE coping amazingly well!

    Dianne

    judy
    Participant
    Post count: 20

    Hi Diane – It’s Judy I still don’t understand.. This might be stupid to ask can your thyroid come back alive?? :mrgreen: HE HE .. I was told it is dies?
    Does anyone know exactly what happens to it?
    Is it healthy to have a dead thyroid living inside of your body??
    maybe I should of had the surgery.. :shock:

    DianneW
    Participant
    Post count: 292

    Judy, as I understand it, in Diane’s case she first had her thyroid removed surgically. However, it’s not possible to remove ALL thyroid tissue, and sometimes the thyroid can grow back when it’s been surgically removed. It doesn’t grow completely back, but just enough so that under extreme antibody attack the tissue that does grow back can make the person hyperthyroid again. When this happens, the patient has to have another treatment.

    When Diane’s thyroid grew back she had RAI, but apparently she didn’t have a large enough dose to stop her hyperthyroidism. Her case is very unusual. She has a VERY stubborn thyroid that doesn’t want to be destroyed!

    When a person has RAI the thyroid doesn’t grow back, because the thyroid cells that aren’t destroyed outright by the RAI are damaged, and even though they may be capable of putting out some thyroid hormone, they aren’t likely to be so healthy that they will increase in number and then make the patient hyperthyroid again, In fact, the opposite is the case. Over time, they usually decline in function. As years go by, RAI patients usually need higher doses of thyroid replacement hormone (at least until the thyroid has failed all it’s going to).

    If your RAI treatment was successful and it’s been some time since your treatment, you don’t have to worry about becoming hyperthyroid again except by taking too much replacement hormone. There are a few RAI patients who become hypothyroid temporarily early on, and then find it was just a "stunning" effect and they become hyperthyroid again, but once you’ve been hypothyroid and on replacement hormone for awhile, this won’t happen.

    As for having dead thyroids living in our body: There won’t be. Any tissue that is damaged enough to die will shrink up and be eliminated by the body’s waste system, so it won’t be hanging around. Is that process healthy for us? That’s a good question for your doctor. There are certainly effects on our antibody levels. One of the reasons our thyroid stimulating antibody levels rise following RAI is that our immune systems react to the damaged tissue. Most of the tissue damage occurs in the early months following RAI, and the rise in antibody levels that is seen in RAI patients corresponds to that time. However, the antibody levels are still slightly higher even five years following RAI, while with antithyroid drug treatment and surgery the antibody levels tend to normalize. (Thyroid tissue is still declining in function for many RAI patients during that time.)

    As long as thyroid levels are under control, does it have health consequences to have a rise in your thyroid stimulating antibodies? This question hasn’t yet been answered to my satisfaction, considering that higher levels of some kinds of thyroid antibodies are associated with a higher likelihood of having Thyroid Eye Disease. There is still a lot not known about the cause of TED, or about other extra-thyroidal manifestations of Graves’ Disease. These are all questions to discuss with your doctor, but many of these questions don’t have definitive answers, no matter whom you talk to.

    Back to Diane’s thyroid: Even though she’s still hyperthyroid following her RAI, it’s likely that some damage was done, and that if she waited long enough she would eventually become hypothyroid. It’s simply impossible for radiologists or endocrinologists to predict how any particular thyroid gland will react to any set dose of RAI, and perhaps in her case, her doctors underestimated how much it would take for her, since she didn’t have a complete thyroid to start with. It’s also possible they gave her a good-sized dose and her thyroid tissue is just VERY resistant to treatment.

    Diane, what did your doctors say about what happened? I’m curious! How long ago was it, and do you have any idea what they’ll recommend next?

    grneyeladydi
    Participant
    Post count: 16

    Hi Dianne, so nice seeing your name once again. My doctor told me exactly what you said. My thyroid is resistant to treatment. After I had my surgery my thyroid grew back so quickly and was large enough to see the goiter again. My understanding is I had the highest dose of RAI without going into the hospital. But as luck shall have it I’m back to dealing with being hyper. Is it the same size as before RAI, no, but I have NEVER been on any type of thyroid replacement therapy. My numbers just won’t allow that to happen. I am going to have another CT done before I see my doctor and we will decide what to do next. He is thinking more along the lines of RAI again. It’s been about 1 year 3 months since I had my dose of RAI. It’s just a stubborn darn thing. I know what the truth is, I’m so sweet and kind that it doesn’t want to leave my body. :lol: HA HA HA You have to keep a sense of humor with this lovely disease. Hang in there Judy, it WILL get better. Please don’t pay attention to my situation, I’m just a……..weirdo. :roll: Ahhhhh I crack myself up. I was in one of those moods when I posted where I needed to vent. God Bless you Dianne and thank you as always for thinking and praying for me.

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