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in reply to: Medication Dosage Lowered, Not Feeling Well #1073721
Welcome, glad you joined us!
Did you have the nausea before you were treated, or is it a completely new symptom? How long have you been on the lowered dose and feeling less well than before? How long do you have to wait to be tested again?
I can reassure you quite a lot about the eye disease. Only about 5-10% of patients will have serious enough eye involvement to need medical or surgical interventions; and for the rest, any eye symptoms range from moderate to completely unnoticeable. Since the majority of patients who have eye involvement experience its beginning within six months before or after the thyroid disease begins, you’re already statistically past the most dangerous period.
There is little a person can do to prevent Thyroid Eye Disease. The only risk factors known at this time are cigarette smoke (first and second-hand), and having abnormal thyroid levels (especially hypOthyroidism). Too much still remains unknown about the causes of TED for much to exist medically in terms of prevention strategies. By keeping your levels under close management and avoiding all forms of cigarette smoke, you’re doing everything possible at this time.
It’s a good idea for everyone with Graves’ Disease to get a baseline exam so you know where your eyes are to begin with. Your ophthalmologist can do a measurement of how far your eyes normally protrude, and when you go back a few months later he can tell if they have changed. There’s a little instrument called a Hertel exophthalmometer used for this purpose. CT scans or MRIs may also be used, but generally are reserved for when clinically obvious signs of TED are present.
Changes in the eyes happen so subtly that it’s greatly helpful to have objective measurements of any kind. I had no idea I had TED even though my eyes had undergone drastic changes. I saw myself in the mirror every day and simply didn’t notice the minor daily changes. All I knew was that I hated the more recent photographs of myself, but I couldn’t say why that was so. (I even had problems with vision and eye pain, but explained all those things away to myself as well.)
Early symptoms of TED might be a feeling of grittiness in your eyes, sensitivity to light, or noticing that your eyes are watering all the time (actually a symptom of dryness–your eyes are trying to compensate for being overly dry). However, these could be a symptom of mild TED, not necessarily a serious form. Double vision or limited ability to move the eyes up and down, or from side to side, or changes in color vision are more worrisome and warrant an immediate appointment with an ophthalmologist.
But as I noted earlier, at this stage you’re unlikely to have to worry about the eye disease.
I hope you start feeling better, or at least, find the cause of the nausea.
in reply to: Question About Eye Problems #1073729Amy,
If the MRI showed normal ocular muscles, that’s a good sign there’s no Graves’-related inflammation going on. That’s what "normal" means. You probably won’t need to see an ophthalmologist before Tuesday. I know it’s difficult to get an appointment on short notice anyway. An MRI is highly diagnostic for soft-tissue changes, but do talk to your son’s endo if you have any concerns at all about this.
If there was inflammation in his eye muscles, RAI could make it worse, though it could be prevented by giving him steroids along with the RAI. It’s also possible for RAI to cause the onset of TED, though when this occurs it’s mild and temporary, so giving steroids to prevent this is not ever recommended. I’m only mentioning is so that if it should occur you would keep it in perspective.
I understand what you’re saying about not having one doctor who can educate us about every aspect of this disease. They’re all so busy, and it’s difficult for them to know how much information each patient wants, and what level the patient/family is capable of understanding that information, so I think often they just give skeletal info in the simplest terms and wait for any further questions, while they manage their end.
Talk to his endo again about the MRI results and I think you’ll be reassured in that regard that this isn’t a reason to postpone your son’s RAI.
Best wishes,
in reply to: blepharotomy #1074288Hi Nina,
Glad to see you back, and that your thyroidectomy and eye radiation went well. Do you still need a decompression, or did the radiation help enough that you don’t?
You probably should tell your doctor that you’d like to have your Free T3 and Free T4 levels tested as well as your TSH, if you’re not comfortable with just the TSH test. Tell him you’re not feeling back to full wellness and you’d like him to find the reasons.
I don’t know of any reason to think that treated Graves’ Disease is related to the other problems you mention, but you should certainly ask your doctor if he knows what could be causing those problems as well. There is a recent thread on this board with a discussion about acid reflux and thyroid levels in case you’re interested.
in reply to: Question About Eye Problems #1073727Amy,
Pain when moving the eyes can be a symptom of eye muscle swelling that occurs with Graves’ Disease. It’s possible to have a degree of eye muscle involvement and fat deposits behind the eye that don’t necessarily show or result in a lot of proptosis (bulging). I recommend your son be examined by an ophthalmologist who can evaluate the need for imaging studies. Since your son is scheduled for RAI soon, if he has any serious ophthalmopathy that might be exacerbated, you would want to know. (I guess that’s probably why you’re asking?)
in reply to: Graves vs hyperthyroidism #1073802Sherry,
Yes, it’s your thyroid levels that determine your treatment for the most part. As you presumed, the reason your levels are being tested again is to see how you’re responding to the meds. Usually patients are given a big dose at first to bring down the levels quickly, but when they’re responding it’s important not to over-treat and make the patient hypothyroid. So at some point, most likely your dose will be cut down some.
It’s amazing how we can pass off our symptoms to almost anything rather than admit we might be ill, isn’t it? I went untreated for years, thinking my shakes were low blood sugar, and that I couldn’t sleep because of anxiety. I blamed other symptoms on "getting old" (even in my 30’s and early 40’s). My doctor wasn’t any better, unfortunately. He thought my shakes and loose stools were "stress" too. It took my eyes popping out of my head for him to do a thyroid test.
I suggest you keep copies of all your thyroid tests. Once you begin to feel better, you might be able to tell if there’s a connection to what your thyroid function tests reveal at the time. There should be a normal range for your lab beside your result every time you have your blood drawn, so you can tell how close your result was to where it should be.
I’m glad you found us! Stick around and keep us informed on how you’re feeling!
Best wishes,
in reply to: Graves vs hyperthyroidism #1073800Sjeffreys,
Symptoms of perimenopause and symptoms of hyperthyroidism can be remarkably similar, so it won’t hurt to have your thyroid levels checked again, especially since if your estrogen levels are dropping it will bind less of the Free thyroid hormone in your serum (blood), leaving more available for your body to use. This could actually make your levels of replacement hormone too high. When I was going through perimenopause my endocrinologist recommended that I take birth control pills to even out my hormone levels so that my levels wouldn’t be bouncing around. It served to keep both my female hormones and thyroid hormones stable. (I chose to take biodentical hormones, not birth control pills, but that’s a completely different subject.)
You may not be experiencing symptoms of Graves’ Disease now (after all these years), but as your doctor was saying, simply the results of fluctuating hormones. Whether it’s from too much thyroid replacement hormone or too little estrogen, your blood tests will determine.
When I was going through perimenopause I had my FSH levels tested one month and they said I was post-menopausal; the next month they were entirely normal, yet all the while I was having heavy periods every three weeks. It was a number of years still before I went through the change, so you can start all this well before the end.
Blepharitis does become more common when we reach middle age and our female hormones start to drop, but it’s also common for those of us with GD. Having even a little bit of dry eyes makes it more likely. Your doctor’s advice sounds like the advice I was given. My sister has it too, and she doesn’t have Graves’. (Hers began following her hysterectomy.)
in reply to: Graves vs hyperthyroidism #1073799I’m replying first to lizzycat, who asked about the "damage" caused by Graves’ Disease.
There are three broad categories of damage the autoimmune process of Graves’ Disease can inflict, though within those there’s more that can be discussed.
The autoimmunity can affect the thyroid (causing hyperthyroidism), the eyes (causing Thyroid Eye Disease) and the skin (causing pretibial myxedema). Pretibial myxedema is a painless swelling of the tops of the feet and fronts of the lower legs (rarely, other places), with an orange-rind appearing deposit in the skin. It occurs in people who also have the eye disease. A rare fourth manifestation of autoimmune thyroid disease is thyroid acropachy, usually associated with pretibial myxedema, that causes soft tissue swelling and clubbing primarily in the fingers, toes, and lower extremities.
Not everyone with Graves’ hyperthyroidism will have Thyroid Eye Disease that is noticeable to the patient, although sophisticated imaging techniques can detect subtle changes in almost every patient. Only 5-10 percent of Graves’ Disease patients have significant eye changes that need physician interventions. Even fewer have pretibial myxedema. It’s not understood why some people get TED and others don’t, though smoking is a definite risk factor for more severe forms of TED.
Is this what you were asking, lizzycat?
in reply to: Lab Order Questions #1073792Surely it does no harm to test TSH, since it remains suppressed only in some patients. Regardless, this is a call for each patient’s physician.
in reply to: TED symptoms and temperature #1074095That heat sounds mighty good to me too (from a snowy February day in Idaho). But the main point is, let’s all remember that a drop of prevention is worth a pound of cure when it comes to remembering our artificial tears (in any weather)!
in reply to: 3rd time diagnosis #1073772It’s not very likely that your Graves’ will have a permanent remission when you haven’t even had a long-term remission and it’s come back twice already. That’s reality. However, you do have the choice of using ATDs for long-term management if that’s what you want to do, as long as you can find a doctor who agrees with this and will monitor you. A recent study in the European Journal of Endocrinology compared the safety of managing Graves’ for ten years on methimazole with treating with RAI and concluded that it was comparable. IT’s your choice to make, as long as you’re doing okay.
I’m one of the people who had a rough time with RAI, but I don’t think it’s necessarily a "horror story" for everyone. I think there are real reasons that some people have a rough time, some of which can be avoided with better management by the medical profession. It can take some time to stabilize thyroid levels, and those months can be difficult when that takes longer for some people. If you are considering RAI, talk to your doctor about ways to make that process faster.
Surgery is another option, and can make the process of stabilizing levels faster than with RAI.
It does remain possible that in the future, treatments will be available that work on the autoimmune factors of this disease, but you have to consider the safest way to treat yourself now. Best wishes making those choices.
in reply to: Lab Order Questions #1073789I understand why you’re asking these questions. i think your doctor will have to answer them for you. If we tried to do that, we’d really be telling your doctor how to do his job, and that’s not appropriate here, so do ask him why he’s testing the total levels instead of the Free levels, etc. Then let us know what he says, okay?
in reply to: new to Graves’ #1073780RAI does not cause a person to become sterile. People are able to have children following RAI, and children born to RAI patients have no increased risk of birth defects. This has been well-studied. All forms of radiation, whether for diagnostic or treatment purposes, or from exposure to the sun, cause changes to DNA, and RAI is no exception. The amount of radiation received to the gonads in RAI treatment is roughly equivalent to a couple of barium enemas. Since all radiation causes small changes to DNA, the risks to the gene pool on the whole vs benefits of treatment to the patient have to be weighed, just as with all medical radiation, and it’s a personal decision for each patient to make.
If you’re concerned about costs, you will probably be able to manage antithyroid drugs most easily, as you can apply for reduced-costs on the meds if you don’t have insurance. Some people aren’t able to tolerate them, in which case another choice would have to be made. If your wife can tolerate antithyroid drugs, most people take them from 1-2 years and then stop to see if normal thyroid levels can be maintained once the drugs are stopped. (The doctor usually has a good idea even before whether this will happen, depending on whether the levels have come down, whether the thyroid has remained enlarged, and what the antibody status is by that time.) Approximately 50-60% of patients initially have a remission, but only about 15-20% have a permanent remission (meaning, the hyperthyroidism never returns during their lifetime). If the hyperthyroidism returns, you have the choice of going back on the drugs or choosing a permanent treatment (RAI or surgery).
RAI is fairly expensive. I can’t give you an exact cost at all, but it will be well over $1000 I’m quite sure. Perhaps others can tell you what they paid. It can take 1-3 months to control the hyperthyroidism (if successful; sometimes a second dose is needed) and after that can take 6 months to a year to adjust thyroid replacement hormone, unless it goes extra smoothly or extra badly, in which case it can be less or more than that. I’m trying to give you the short version.
As you guessed, surgery is probably the most expensive treatment, as it involves hospitalization. It may not be an option for the uninsured.
Starting out with the meds isn’t a bad choice while you learn all you can about the treatment choices, and if you want to plan for RAI or surgery you might start thinking of purchasing surgery with the idea of making it through that year of a pre-existing condition, if you can still obtain it. I wasn’t able to obtain life insurance once I had a GD diagnosis, which is ridiculous considering that GD doesn’t reduce longevity.
I hope I’ve answered your questions.
in reply to: Remission but still in "fog"? #1073785Laura,
Studies have been done on this subject, and many patients do report having residual symptoms of this nature, though the reasons aren’t well-studied or understood. Send me your email address by private message and I’ll send you a bulletin on the subject.
in reply to: Hi My levels have changed #1073807Something else to keep in mind about the TSH is that it can remain as low as it is right now even when your other thyroid hormone levels have normalized. For some people it can remain there for a few months or longer before it catches up and becomes consistent with your Free T3 and Free T4. This occurs uniquely in Graves’ Disease patients. Until a few years ago doctors believed the pituitary gland sort of "went to sleep" when we had been hyperthyroid for a long time, but this didn’t happen with everyone. More recently it was discovered that this only occurs with patients who have high levels of TBII antibodies. When the TBII antibody levels decline, the TSH levels rise.
The practical implications of this are that for Graves’ Disease patients, doctors have to monitor Free T3 and Free T4 levels rather than the TSH during the early days of treatment before the TSH is able to function normally.
So for right now, don’t worry too much that you have a low TSH. It will probably begin to respond as time goes on. Also, you will find you’ll be able to sleep normally again when your Free T3 and Free T4 get closer to normal. I know it’s difficult to keep waiting, but you’ve made it this far, and you’re getting so close! Don’t get discouraged now!
Bone aches cold sores, and sore throats are not problems I’ve heard people mention a lot as part of Graves’ Disease. Your daughter should definitely mention it to her doctor, and if he tells her the same thing, she should ask him to follow up on what might be causing it. I hope there’s nothing serious, but the doctor has to determine that.
Best wishes,
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