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  • NormaRae
    Participant
    Post count: 3

    I have just recieved RAI and am wondering about the care process from here, dealing with the anxiety and poor health, would like to know what to expect through care. Anyone? Thanks,
    Norma

    Kimberly
    Keymaster
    Post count: 4294

    Hello – Glad you found us! Hopefully, you will get some additional responses from those who have had RAI, but you can also do a search on this board for "RAI" to read stories from others who have been through the various stages in the process. The first step is to wait for the RAI to do its work in destroying the thyroid gland. Early on, some patients may temporarily experience a worsening of hypER symptoms as the thyroid gland dumps its existing stores of thyroid hormone. Definitely consult a doctor if these symptoms become severe.

    Keep an eye out for symptoms of hypO, which can include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. If you notice these symptoms *before* your next scheduled appointment, see if you can get a set of labs run sooner – as you don’t want the hypO state to persist too long.

    Once you do go hypO, your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make a dose adjustment, and you will follow up again with another set of labs in another few weeks and repeat the process if your levels aren’t yet stable.

    It *is* a long process, but hopefully one that will restore you to good health.

    Best of luck!

    RickInFla
    Participant
    Post count: 1

    My daughter is 15, and received RAI in July of 2010. We have yet to ‘normalize’ her levels, but are increasing the synthroid just about every 4 weeks. She is currently taking 125 micrograms daily. She remains hypo, with weight gain her biggest challenge. Our pediatric endocrinologist stated it could be 5-7 months before her levels return to ‘normal’ – which is something we have not had in almost 3 years. Continued success and recovery. Rick

    NormaRae
    Participant
    Post count: 3

    I have had blood drawn now after having RAI 03 Dec 2010. I will go to see general pract on the 10th. Unknown when/if I can make another appt to Endo? Went from 6-14 in size in a week around the end of November. It is very hard to function physically or mentally and I am terrified of having a stroke. I am still on inderal 2x/day. I enjoy being busy at work, I have been given extra work 12hr days. I guess today is a venting day as I am struggling every day about this weight gain. I really need to get back to my real size. I appreciate this sounding board, though I have told my new endo that I am really depressed and my weight gain, he says he’s got this. I am trying to cope and find myself saying and doing the most stupid things anymore, and am getting sick of obsessing about this. Am down to loosing only a handful and a half of hair when I shower instead of 5 handfuls. Thank God I have alot of hair. So far I have had no sypmtoms with my eyes and am still scheduled to have PRK? surgery in April. Thanks for being there. I sometimes am not sure how I endure each day or night. Take care all.
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    Ski
    Participant
    Post count: 1569

    This is definitely a tough time for you, I know ~ the first thing you need to know is that recovery is a very slow process. Each step along the way is a step closer to health, and you really need to see it that way in order to get through it with the least possible frustration. It’ll be tough anyway, I won’t lie.

    Wow, that weight gain is really substantial ~ and it happened before you had RAI treatment, while you were still hyper? I would ask your doctor specifically about that part of it, because that’s alarming and extremely unusual for GD patients.

    RAI takes about six weeks to have the majority of its effect on the thyroid, but can continue to lessen thyroid function for up to six months, if it doesn’t destroy the thyroid outright at the beginning. In addition to that, your body still has within it the excess thyroid hormone that existed at the time of RAI, and that takes about six weeks to be flushed completely out of the bloodstream, so for a while, even without new thyroid hormone being made by the thyroid, you may still feel a bit hyper, and you are definitely not "well."

    If your general practitioner is confident and capable of checking/managing your thyroid hormone levels, it’s possible to use them to manage your condition from here on out. If you feel that they are inadequate for that, you should be able to go back and consult with the endo. I would recommend getting blood tests done prior to any appointments with either doctor (in time to have the results in hand at the appointment), so you make the best use of both of your time. It’d be great to have a standing order at your lab, but be very clear with your doctor about how often they allow you to go in, or what threshold they feel you should pass before you go in ~ it’s a blessing, if you can get it, but if you abuse the privilege, they can revoke the order, so it just makes things harder. You should be looking for symptoms of hypothyroidism ~ add up 4 or 5 of the classic symptoms and be feeling them frequently ~ at least, before you get your blood tested. It doesn’t ALWAYS reflect how you’re feeling, because the TSH can lag behind the T4 readings ~ so at first, you should ask your doctor to please ask for both test results. It’ll help you and your doctor figure things out more quickly. The wait to hypothyroidism may take a while, so you should discuss with your doctor any pattern of appointments. You may want to make one a fair distance off (maybe even 3 months away), but leave the door open to call for an urgent blood test and consultation if you feel you’ve dropped off a cliff into hypo. It’s not extremely common for that to happen, but it does happen to some, and you want to make sure you’re prepared to get tested and evaluated if you need it, because it’ll have a direct relationship to how quickly you can come back to normal with replacement hormone.

    You are on the way to recovery, be glad for that. Remember that your body has been the object of a great assault, and once you reach normal thyroid hormone levels, all that means is that your newly healthy body can now BEGIN to heal from the attack. Even after you reach a normal point, there is more improvement to be had. I know this isn’t what you want to hear ~ it’s true, we’ve all been where you are, and we felt JUST the way you do, so please hear me when I say that we know of what we speak. Find a way to enjoy the small improvements, and someday in the future you’ll look around and say "hey, I’ve hardly had a thing to complain about that related to Graves’, all day!" I am sorry to say that it won’t be tomorrow, but it WILL come, I know it. I really wish there were some magic potion to accomplish a truly rapid recovery, but there isn’t. So grab a blanket of patience, rally the forces within, drop encumbrances to your time that suck everything out of you, bulk up on the activities that feed your soul, and you’ll be able to ride this out okay. I promise.

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