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in reply to: weird eye sensations should I worry? #1172014
Sitting here thinking how much easier it would have been for that doctor to say something like, “Yes, it IS frighting to have our appearance change due to disease.” Because it is frightening. And it’s not just appearance, either. Oh, well. That doc’s empathy response was down in the negative column. He could still be knowledgeable about the technical details of the disease, even if hand-holding isn’t in the cards.
You probably have heard of the Serenity Prayer. If not, I found it helpful when I was going through TED to remind myself that there are some things over which I have NO control, and to let them go. Not easy. But it put things back into perspective.
in reply to: Curiousity… #1172045Just fyi, Jennifer. Bri stated that the bruising had started PRE meds. Not that you are wrong about medications being associated — RARELY — with aplastic anemia. Just that her question appeared to be about Graves (antibodies) and bruising.
So, the cause of the bruising needs to be investigated by a doctor. There can be multiple possibilities.
in reply to: weird eye sensations should I worry? #1172012Kells1, be sure you are using the drops frequently enough. Some people have to use them every 15 minutes or so. And, also be careful to use the preservative free drops unless otherwise instructed by your eye doctor.
in reply to: Curiousity… #1172042I cannot say that I’ve ever read anything about bruising being associated with Graves.
Sore throat and stomach upset this long after RAI are not normal events. I think you should make an appointment with your doctor to see what might be going on.
in reply to: Labs normal but I don’t feel normal #1172025Hair and nails are considered “frills” by the body. They are the first things denied nutrients when we fall ill, and the last things to be replenished once the body heals. (This info from my dermatologist.)
Just because you have hit normal levels of thyroid hormone, it does not mean that your body considers things to be completely normal yet. Your body needs to heal. That can take many more months AT normal levels of hormone than you have experienced. My GP — when I was first treated for Graves — told me that based on her experience with patients nine months AT normal levels of hormone — on average– were needed before the patients started to truly feel normal.
Try thinking of hyperthyroidism being hurricane winds hitting a town. Just because the winds are gone, the town needs time to rebuild before things are truly “normal” again.
in reply to: weird eye sensations should I worry? #1172007While it is important to be under the care of an opthamologist when we have TED, they typically only “watch and wait.” We need to be seen at somewhat regular intervals. If there are new, and disturbing symptoms, making an appointment to have them checked out is appropriate if the symptoms persist or increase in severity. Even then, unless the doctor suspects that your optic nerve is in peril, (i.e. if your sight is threatened), they watch and wait, weighing the known, signficant and common side effects of intervention with the knowledge that TED subsides on its own, over time.
If you are experiencing symptoms like this in the a.m. primarily, and if they go away as the morning progresses, you might try elevating the head of your bed slightly with bricks or boards, so that you sleep on somewhat of a slant. This helps to minimize the possibility of swelling that can occur overnight while we are in a prone position.
Sending hugs, catstuart7. I know how scarey this time is in your life.
Personally, I suspect that some of the medications used to control things play a role as well. That was my experience, anyway. I shudder to think of any student trying to function academically the way MY brain worked while on PTU, even though my levels were supposed to be “normal.”
One thing to keep in mind, though. It takes time AT normal levels for our bodies to heal. Many of us spent months, if not years, with abnormal levels of thyroid hormone, and we need to expect some time for our bodies to recover. If someone gets hit by a truck, we do not expect them to function completely normally right after the surgery that resets the bones, etc. We expect a period of time where they do rehab to restrengthen muscles, and all. And, if they are students, they do not typically go back to a “full load” academically the day after the surgery. Being hyperthyroid is a bit like being hit by a metabolic truck, in my opinion. A big one.
First off, we do NOT get elephantiasis, exacerbated by RAI or otherwise. Pretibial myxedema and elephantiasis are two vastly different things. Elephantiasis is caused by microbes, carried by mosquito as the vector, it is not caused by antibodies. Pretibial myxedema is caused by antibodies. And while pretibial myxedema can be at least temporarily disfiguring of the SKIN on the legs, it tends not — in general at least — to be anywhere near as bloating and disfiguring as elephantiasis.
Please be careful what you pull off the web from other sites. The web is an uncontrolled environment where anyone can say anything regardless of it’s veracity, and have a reading audience. There’s a whole lot of BOGUS information out here in cyberland.
From what I have read, pretibial myxedema is associated with TED. What I mean is that people who do not experience TED tend not to get pretibial myxedema. But not everyone who gets TED gets pretibial myxedema, either. The skin disorder is very rare. I managed to “win” the trifecta, but most people do not. So, insofar as the symptoms of TED can be aggravated — at least temporarily — by RAI, due to antibody action, so, then, one might see pretibial myxedema symptoms as well. Although I have NEVER heard of studies looking at its association or with RAI.
Pretibial myxedema and a distortion of finger joints (I think it is )– called acropachy, are both associated with people having Graves. They occur rarely — I believe it is less than 1%. Also associated with Graves is, of course, TED, which is much more common. Precisely why this is, we do not yet know. But given that TED can occur decades after Graves has been diagnosed and treated (by whatever means), so, too, then, I would suspect one might turn up with the other problems if TED does occur.
And, no, to my knowledge, “keeping our thyroids” does not prevent any of the above. That statement was made, wherever it was made, out of ignorance. People with functional thyroids, and no discernable malfunction, have developed severe TED. People with thyroids on antithyroid drugs develop TED. Whether or not you keep you thyroid is immaterial to the development of these other problems as far as I know.
in reply to: Relapse about 4 months after RAI #1171916Sometimes our doctors put us back on the antithyroid drugs after the RAI in order to keep us from spending any more time hyperthyroid. Sometimes, our doctors have us ride out the hyper period without those drugs. It just depends upon the doctor. But as your thyroid cells die off, you need less of the antithyroid meds obviously. Which apparently is what has happened in your case.
Going five weeks between blood tests is pretty standard. My endo waits typically six weeks to three months. It gives all the various hormones time to “settle in.” It isn’t easy to wait, but waiting does, ironically, help shorten the process of finding the precise level of replacement hormone that we need. It takes time for certain of the blood tests to accurately show the reality of our current levels. TSH is, for example, a bit of an average over time, so it most definitely lags a bit behind the actual thyroid hormones themselves. It is, however, a much more accurate test. So our doctors do like to rely on it.
Try to keep in mind that when our thyroid levels are wonky, our emotional responses to the world around us are also off-kilter, abnormal. We feel things more intensely, and have wider emotional swings than we normally would experience.
in reply to: Anecdotal evidence #1171940Bringing this back into view.
Hi, Bri, and Debbie, and welcome to our board.
Bri — you asked about the eyes bulging. LOTS of us get a kind of wide-eyed stare with hyperthyroidism. It makes us think that our eyes are actually protruding, when in fact it is only our upper eye lids that have pulled tight in response to too much thyroid hormone. If that is what is going on with you, you might see some extra “white” part of the eye, above the colored part. Typically, if our eyes are actually protruding, we see the white all around the colored part. This “upper lid retraction” often (although not always) goes away once we regain controlled normal levels of hormone.
Your eyes might be extra dry, however, as a result of being exposed to more air than they are used to. If your eyes feel gritty, or dry, it is important to supplement your tears with products called “natural tears.” They come in various brands, and there can be a bit of trial and error before you find one that you prefer. They come in daytime and night time formulae. The night time product has the consistency of petroleum jelly. And, our opthamologists prefer that we use the artificial tears that come without preservatives in single dose packages. Preservatives apparently can irritate when used as frequently as many of us have to use the product. These drops are NOT the “get the red out” type of drops, nor are they they drops that are advertised for allergies. If you have questions, ask someone at the pharmacy to direct you to the proper brands and types.
in reply to: HELP: Could it be a misktake???!!!….. #1171936Just get copies of your lab reports, so that you can double check things. Fingers crossed that you are, indeed, in remission. But keep in mind that to be a “real” remission, it has to persist for over a year. (The technical definition of remission)
in reply to: Controversy over T4 vs. a T3 / T4 combo #1171977T3 is immediately available to the cells — and USED in the cells, regardless of whether or not it is needed at that point in time. We do convert T4 into T3 as needed. People online who say they do not convert T4 into T3 should be taken with a grain of salt. If they were not converting, they would be dead.
I took a minimal dose of T3 for a while, with my endocrinologist’s approval. I became thyrotoxic and had to stop it. By “minimal,” I mean that I was taking half of the smallest dose possible per day. It caused heart issues. Some people may be able to tolerate a minimal dose. But it is more hazardous, and probably isn’t necessary. Be very, very careful of those who suggest the supplementation of T3 in addition to T4.
I am on T4 alone, and doing wonderfully well.
It pays to note that in these articles the cognitive issues are associated with HYPERTHYROIDISM, not Graves antibodies. Not when we are back to normal levels of hormone. I don’t know of studies that talk about this cognitive problem persisting once normal levels of hormone are reached and controlled.
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