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Raising the head of our bed cured my husband’s middle-of-the-night heartburn, so now he loves it too.
” title=”Very Happy” />Hi John,
Typically, if we were hyperthyroid before we took RAI, it can take six weeks just for the body to flush out the thyroid hormone that was in your system on the day you took it, so January is not "too late" to be tested, though I completely understand your concern. To be completely frank, you may not have gone hypo by that point, so you wouldn’t want to start taking replacement hormone if you don’t need it yet. At the six week mark, you will probably begin to have some sense of the effect it has had on you, and things may change quickly after that, so do get some guidance from the doctor on how to proceed in the event you suddenly feel as if you’ve dropped too low.
It’s pretty normal to feel a little depressed ~ lots of things can play into it, and it may be the shift of chemicals in your bloodstream, but could be other things as well (just coming to grips with everything that’s going on, for instance). Some people do use anti-depressants during this time, and they can help, but they take time to build UP in your system, so it’s something you may want to discuss with your doctor to see if they believe it would be worth it for you.
There is the potential that you may feel even more hyper for a few days ~ this occurs because the thyroid cells that are destroyed will release their stored thyroid hormone all at once (we call it a "dump" of thyroid hormone). It can happen at different times for different patients, and some never experience it (I was one of those), but it’s good to be aware of the possibility. The most common timeframe I’ve heard is about 2 weeks after RAI. If you are on beta blockers, sometimes the doctor will recommend taking a little more of the beta blockers on those days, but don’t do it without instructions from the doctor.
My favorite advice for getting your dose "dialed in" (once you are measured in hypothyroid territory) is to have a standing order at the lab. It can take a while for the replacement to build up in your system, so starting sooner will ultimately result in a shorter curve required to get back to normal. Keep a list of classic hypothyroid symptoms handy, and go to the lab when you can say you’re feeling 3 or 4 of them regularly. Remember that, at first, your TSH may well remain suppressed, and your T4 will be a better way to see where you stand, so make sure the lab is running both levels. After you’ve stabilized, for the most part, TSH is much more sensitive, but T4 is more helpful at the very beginning.
Once you’ve started taking replacement hormone, make sure you take it in the same way each day. Not necessarily at the same exact time, but same time of day, on an empty stomach, wait 45 minutes to an hour to eat, wait 4 hours to take mineral supplements. You need to wait 6 weeks after beginning or changing a dose in order for your test results to accurately reflect the way your body is responding to that dose, so it can be time-consuming to "dial in," especially since your dose needs to be changed by small increments as you’re going through the process. Any change in your dose is likely to trigger some symptoms, which are related to the *shift* in thyroid hormone, rather than to the *success* of your dose. Our body is finely tuned to thyroid hormone levels, which (in a normal person) do not change as much as they do when we’re being treated, so it is trained to react to any large change in thyroid hormone as if our body is in an emergency state which requires protection. For that reason, during those times, you may notice your hair falling out a bit more than usual, and you may notice that your nails get brittle. These things will correct once your levels are stabilized, and should resolve completely once your levels are NORMAL and stabilized.
You should also know that it’s "a little better every day," not "all better one day." When your levels reach (and remain) at a normal level that works for you, THAT’S when your body can begin to heal, so know that you still have healing to do, even after your test results are good.
Also remember that the normal range is VERY wide, simply because many people feel well at different points along the range. If you don’t know what your "normal" was before you were sick (and almost none of us did), then you have to rely on your own feelings as you reach that point. A symptom diary can help your doctor zero in on where you might need to go in order to feel completely well.
So, it’s a long road, but you’ve begun. Congratulations on the new child, how exciting!
” title=”Very Happy” />Let us know any questions you have as you go through this, glad you found us!
Hi Rebecca,
You’re actually dealing with two separate (but related) conditions, so let’s try to draw those boundaries first.
Graves’ Disease, the thyroid disease, is why you are hyperthyroid, and why you would be deciding on thyroidectomy as your treatment.
If the ATDs have not been working for you this time, then you need to figure out how to achieve normal, stable thyroid hormone levels. There is one other ATD (PTU), and it can be effective in patients who do not respond to carbimazole. It is controversial here because it has recently been prohibited for use in children due to a potential of causing liver damage and, in rare cases, liver failure (both ATDs have that potential, but the risk is slightly higher with PTU). Perhaps this is something you’ve already tried, but I’m trying to cover all bases.
Thyroidectomy is a good way to treat your hyperthyroidism, and it sounds as if you have a handle on what happens after surgery in your healthcare system, so funding the interim testing to be sure your levels are good can shorten your recovery time and ensure that you don’t slip into hypothyroid territory for long. Thyroxine is chemically identical to our own thyroid hormone, the substance your thyroid is overproducing right now, so it’s EXTREMELY rare for people to be intolerant or unable to achieve normal levels using it. There are various inert substances inside the pill that some people are sensitive to, and there is a very strict protocol for taking the replacement hormone (empty stomach, wait 30-45 minutes to eat, wait 4 hours to take mineral supplements), so sometimes patients need to use another brand or pay closer attention to the way they take their replacement hormone, but taking the leap that you’ll have to buy Armour clandestinely and manage your levels alone is a BIT far to take this right now.
” title=”Very Happy” /> I understand, I was hyper too… Just try to manage what you can manage TODAY, and cross the next bridge when you know you must.Thyroid Eye Disease (TED) is the reason you may need to take steroids. It is related to GD, and TED happens often coincidentally with GD, but in the strictest sense of the word, does not respond one way or another to thyroid treatment. It has the potential to be aggravated by radioiodine (RAI) treatment, so if you are experiencing severe TED symptoms, your doctor may not want to use RAI treatment. In a rather odd sideways twist, if you have RAI treatment AND take steroids concurrently, typically there is no aggravation of TED symptoms due to RAI, but that’s not the decision you appear to be faced with just now. TED can also be aggravated by going severely hypothyroid, but that typically resolves when thyroid hormone levels are stabilized, so minimizing your risk of becoming severely hypothyroid will serve you well.
If your doctor is recommending that you take steroids for your TED symptoms, then it’s possible that your doctor is trying to protect your sight, and also manage your "hot phase" so that you have a better result in the "cold phase." TED has a well-defined disease curve, but the actual time associated with the whole process is something that’s unique to each patient. It can be anywhere from one to three years, and cigarette smokers get the longer disease curve, but everyone who is conclusively dealing with TED has basically four phases of disease: an initial "hot phase" where changes are rapid and dramatic, a "plateau" where things don’t change much, a period of some improvement, and finally a "cold phase" where changes have ceased to occur. Some patients’ eyes return nearly to normal in the improvement cycle prior to the cold phase, and so they thank their lucky stars and move on with their lives. Other patients have continuing issues with bulging, double vision and tissue swelling, and once the cold phase is reached, those patients can look into surgical solutions for those problems. Surgery earlier than that could aggravate the condition and negate any benefit gained through surgery, so it is only recommended in the cold phase (except for patients who may be experiencing compression of their optic nerve ~ that could take your sight, so surgery is done on an emergency basis to save sight). Now, the reason I go through all of that litany is to let you know that steroids, used early enough in the process, can minimize the damage caused by the "hot phase" so that your eyes are in better shape when you ultimately reach the "cold phase." It’s true that they carry their own side effects (though none that would affect your thyroid hormone levels, FYI), and those risks must be weighed against the benefit of reducing the effects of TED’s hot phase, but I think you should have a frank discussion with your doctors about those specific points, rather than giving them an "I WON’T" statement. It’s important to have all the information, including your doctor’s insight, before you make that final decision. It is still your choice, after all is said and done.
I wish you luck! Let us know how you’re coming along!
