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in reply to: More Eye Questions – driving me crazy… #1073689
Your CT scan showed only mild changes to the muscles? Mine showed normal muscles, and yet I have had significant double vision, enough to be disabling, and have had a serious case of TED requiring multiple surgeries. So the CT scan doesn’t tell the whole story, as you surmised.
I’m heading out to California to visit family and will be back Tuesday. Best wishes to everyone.
in reply to: Not Feeling Myself #1073617Hi melischa,
Welcome, and I hope I can be of a little help.
First, if your TSH is low and your replacement hormone dose is being LOWERED, it means you are a little hypER, not hypO. Your doctor had you on a bit too much replacement.
Second, as long as our levels are still moving around, we don’t ever feel entirely well either physically or emotionally. It takes time on a stable dose of replacement hormone before we really start a full recovery from that period of hyperthyroidism and emotional craziness, and in some people it’s worse than others. It might depend on how long you were hyperthyroid to begin with and how long it takes to stabilize your levels after treatment.
RAI destroys a certain amount of thyroid tissue, and then in the next year or longer, more thyroid tissue continues to die out, both from the premature aging effects of the RAI and from the effects of autoimmunity on the thyroid gland. Depending on the dose of RAI given and how the individual person’s thyroid gland responds, the person might become stable on thyroid replacement fairly soon following RAI, or this might not happen for a year, or even the five years it took for me. However long it takes, you won’t begin a full recovery until you are stable.
It doesn’t sound like you are there yet. That might explain why you are having some of the continuing symptoms. You may also have some underlying inherited psychological abnormalities that are exacerbated by the thyroid issues not being completely well. That’s not uncommon either.
If you haven’t read a book called The Thyroid Solution by Dr. Ridha Arem, you might find it interesting.
This is frustrating, I know. If it’s any comfort, you should begin feeling better once you’ve been on the same dose of replacement hormone for at least six months to a year.
I take Coenzyme Q10 daily and have for years, but it has had no impact on my migraines. I’m glad if it has helped others, and certainly it would be worth a try, though it is a bit expensive. It’s a great anti-oxidant, which isn’t a bad thing for people with GD to be taking, since hyperthyrodisim causes excess oxidation in body tissues. For that reason I eat as many foods as possible containing anti-oxidants, and also use supplements that contain them. Other good sources are fish oil and green tea.
Hi Brian,
I have migraines that began after I was on replacement hormone following RAI. There is no history of migraines anywhere in my family, and I was in my late 40’s when I had my first migraine. My migraines, like yours, always begin while I’m sleeping. I was working when they began, and they always began on work days (now that you mention it). However, I still have them now that I’m retired.
The differences I can note are that I have had a low body temperature since I’ve been on replacement hormone, even though I’m on T4/T3, and I haven’t noticed a lowered body temperature on migraine days. I will try taking my temperature and see if there is a change.
I’ve had relief from these migraines by taking either Maxalt or Imitrex, and my neurologist has also prescribed Topamax (an anti-epileptic) which works as a migraine prophylactic. I’ve had a greatly reduced number of migraines since I’ve been taking it. I was having several a week every week, and now it’s down to several a week every month or two.
IThere seems to be an association between Graves’ Disease and onset of migraine. How many people here have had their first onset of migraine after their GD diagnosis? I"m curious.
in reply to: Feeling awful #1073714Hello Hyperm,
You got some good responses. I missed seeing this post until now and am concerned about you. When you read this, please let us know you’re doing okay.
What treatment has been decided upon next?
I’m so sorry to hear you lost your precious little ones because of this disease. It’s not that uncommon, unfortunately, and my heart goes out to all those who have been through this. My prayers are for your comfort and rapid healing.
Please let us know if there’s anything we can do to help.
Best wishes,
in reply to: 3rd time diagnosis #1073778Sandra,
If I had it all to do over, I would not have the RAI, for four main reasons. First, I had radiation thyroiditis, making my thyroid levels worse than they were before my RAI for two months, and I was miserable. Second, it took three months to control the hyperthyroidism, and then I became suddenly hypOthyroid.
My TSH was suppressed and not responding appropriately to my actual thyroid levels, so my endo had to guess at proper thyroid levels when I became hypothyroid, and he erred on the side of caution, leaving me feeling like hell for six months until my TSH began functioning again. Third reason: My levels continued to steadily decline as my thyroid died out over a period of about 4-5 years, so for all that time I felt less than completely well. (Stable levels for a period of time are necessary to begin really healing.) During that first year I lived with a 40-pound weight gain that I couldn’t shed, but got it down to 10 pounds and later was able to lose that after 5 years when my levels stabilized.
I went in to that choice believing RAI was going to be a fast way to get well again. Fourth reason: I have never felt as good on thyroid replacement as I did before Graves’ Disease.
During all that time I had significant exacerbations of eye disease that activated several times. My TBII levels were elevated during that time, and that’s associated with a worse course of eye disease. I was also hypothyroid a number of times, which is also bad for the eyes. A treatment that avoided hypothyroidism would have been better for my eye disease.
If I had the choice to make over again I would choose methimazole treatment, and if I couldn’t sustain a remission I would still choose to be treated with methimazole as long as I could be maintained with a small dose.
If for some reason I couldn’t do that, I’d have a thyroidectomy, and ask the surgeon to leave enough of my thyroid to give me a chance to remain euthyroid, even though I understand this would mean I could become hyperthyroid again.
I think a higher dose of RAI would have made my experience better, as I’d have become hypothyroid faster and avoided the years of dropping levels. Still, I would prefer to have my own thyroid gland.
That would be MY choice; it doesn’t mean it should be yours.
in reply to: Anyone that tried natural methods/diet? #1073639Sabinaa, I’m really glad you have had success so far with ATD treatment, and that you’ve seen improvement in your eyes. This is what one can hope for when choosing this treatment. According to recent statistics. (depending on whose) from 15-30% of patients who use ATDs will have a long-term or permanent remission.
However, this isn’t quite the same as being "cured", because it’s possible that it can return, and if it doesn’t, frequently patients will become hypothyroid due partly to damage that has been done to the thyroid already, and partly due to another set of antibodies found commonly in Graves’ Disease patients: TPO antibodies, which also cause Hashimotos thyroiditis. They can develop at any time even if you don’t have them now. (I had an elevated titre at diagnosis.)
As Ski said, there’s no evidence that any of your dietary modifications are the cause of the improvements in your eyes. I can vouch that Ski’s eyes improved over time as well, and she had RAI treatment and I don’t think she made the same dietary changes you did (correct me if I’m wrong, Ski). It’s nice to think you have control over this disease, but I’m not sure it’s scientifically valid.
I’ve seen many patients who used ATD treatment who have not had the same success you have had. Two I can think of right off the top of my head had some of the worst cases of eye disease I’ve ever seen. So again, while ATD treatment is surely a good place to start for people who so choose, it’s not the magic cure-all you’d like to believe it is; at least, not for everyone. There’s no doubt though, that it can be very useful, especially considering that it acts as an immune modulator, helping to bring antibody levels back to normal for those patients fortunate enough to respond. (Recent evidence shows that both normalizing thyroid levels and direct effects of PTU or methimazole help to normalize antibody levels in responding patients.)
Doctors in Europe have been using ATDs as a first-line treatment for many years, and success rates have been limited there as well, so RAI is being used quite frequently now. Efforts are ongoing to determine why some people respond to ATDs and others don’t. As Ski said, this is a complicated disease, and natural treatments alone simply don’t work.
If natural methods don’t work alone, do they work at all? So far, there’s no hard evidence that they do. If they did, we’d ALL be in line to use them. Still, improving our diets can never hurt, as long as we’re sure the changes we’re making are really an improvement.
The idea to heal the immune system rather than destroying the thyroid gland is a great one, and we all agree with that in theory. I agree with Ski that until the cause of this disease is understood, any attempt to do that is an illusion.
Enjoy your remission, and I hope it lasts for you always, but I think considering it a "cure" is less than realistic, statistically speaking.
in reply to: More Eye Questions – driving me crazy… #1073687I’d like to add my two cents’ worth here.
One of the reasons working at the computer is difficult for people with dry eye issues is that when on the computer we tend to blink infrequently, which is the last thing we with TED need to be doing. I have a difficult time being on the computer at all unless I make a conscious effort to blink often. There’s a little utility obtainable online (perhaps at the Dry Eye Zone) which consists of an eyeball that blinks every six seconds or so. You can keep it on your computer desktop, where it will remind you to consciously blink regularly. It’s been a lifesaver for me if I want to use the computer.
You might get a better prescription from your double vision specialist that will help with work on the computer. It most definitely is difficult on the eyes muscles to focus and move when they don’t want to work together. I don’t know if your workplace could make any provisions for letting you do some other job duty part of the day, but if it was possible, no doubt the double vision specialist could make that a recommendation if you asked him to.
As Ski said, removing the thyroid won’t help the eye disease—BUT (and this is interesting), by a year after thyroidectomy, most people will see the antibodies that are associated with both hyperthyroidism and Thyroid Eye Disease return to normal. The same happens following antithyroid drug treatment. Having normal, stable thyroid levels tends to be good for the course of the eye disease, while being hyperthyroid is unfavorable, and being hypothyroid is worse.
So indirectly, treating the thyroid portion of Graves’ Disease and keeping thyroid levels stable is always good for the eye disease, and does make a difference. It’s one of the few things we can do about the eye disease (the other is not to smoke or expose ourselves to second-hand smoke).
Radioactive iodine doesn’t have this helpful effect, unfortunately. The antibody levels for people who have RAI are higher than pre-treatment for a few months, and then remain present (elevated) at least five years following treatment. (It’s presumed the radiation-damaged thyroid tissue is responsible for the increased antibody levels.)
It’s also been shown that surgically removing the thyroid and then ablating any remaining thyroid tissue with RAI will actually help the course of Thyroid Eye Disease, presumably because there is no longer any tissue for thyroid antigen to react to, eliminating thyroid antibodies entirely. (This has nothing to do with your case; I just thought you might find it interesting.)
You asked if you needed all those eye doctors. If you’re seeing an oculoplastics doctor and a double vision specialist, I can’t see why you’d still need to see an optometrist and a regular ophthalmologist for the time being, so ask them if there’s a really good reason for having you back. My oculoplastics specialist handled all the functions of my ophthalmologist, and in fact all oculoplastics doctors are fully qualified ophthalmologists only know more about TED than most ophthalmologists. I can’t see where the optometrist would play a role. They only prescribe lenses, but your double vision specialist should do that for you now. I got a really great prescription (prisms and all) from a double vision specialist at Mayo Clinic last summer.
You said you thought the TED would run its course and then "sort of normalize" in the cold phase. I don’t know that you can expect for it to normalize. You might see improvement in some areas. Some people see more improvement than others do, and it’s difficult to tell ahead of time. Proptosis might improve a little, but is unlikely to return to normal. More serious signs of TED are less likely to normalize. If you have a very mild case it’s more likely to show quite a bit of improvement. What do all those doctors you’re seeing have to say about your prognosis?
in reply to: Orbital Decompression Surgery #1074406Hi Dolores,
I must have missed a lot of these posts, as I’ve been dealing with something this last week, but am so glad to know Steven has some options now.
I haven’t had the orbital radiation, but my husband’s brother had it, and it helped him tremendously. However, I understand it only helps during the active phase. Is Steven’s disease still active?
As for risks of cancer, that’s something I’ve never heard mentioned, but will do some research on the issue. It does cause early cataracts, which my brother-in-law has, but those are easily dealt with compared to other problems we can have. On the whole, for my bil (who was a smoker and a severe case, even blinded for awhile), the radiation reversed the disease completely and kept him from needing anything but strabismus surgery. Now, he looks almost like he did before TED. He does have dry eyes, but they aren’t severe like mine are. He was able to quit smoking, and that’s helped.
I’ve also known people who had success using an Otolaryngologist to aid in making room in the sinus area during a decompression. I’m sorry Steven has to go through this again, but am glad he has a chance to get more relief.
in reply to: Very scared! Two RAI’s and still symptoms #1073635Deb,
You asked if RAI causes cancer. Studies done over MANY years in large patient groups have shown a surprising slight reduction in the total numbers of cancer cases compared to patients who haven’t had RAI. Within that group there was a slight increase in thyroid cancer and cancer of the small intestine, but it wasn’t clear if this was caused by RAI or by hyperthyroidism. Researchers have since concluded that ablating the entire thyroid will eliminate that slightly increased risk of thyroid cancer. The total picture is such that any increased risk is so small that it’s not worth worrying about. Statistically speaking, you’re much more likely to die in a car accident, or of heart disease, or scores of other common ways.
That didn’t sound very good, but I hope it eases your mind.
I’m sorry you had to be one of those who needed two RAI treatments and I hope when you see your endo you’ll find that the second one worked better than you think it did.
If it wasn’t effective, sometimes it takes such high doses to destroy thyroids that are resistant to RAI that surgery is recommended rather than a third attempt at RAI. The reasons aren’t well understood that some thyroids are difficult to destroy with radiation, but all the same, some are. This is a discussion you’ll need to have with your endo if the need arises. I hope that won’t be necessary.
Best wishes to you.
in reply to: Very scared! Two RAI’s and still symptoms #1073634I know of someone who had three RAIs before she finally got better. It’s rare, but occasionally does happen.
What concerns me about you is that you say you haven’t seen an endo. Do you mean you haven’t had a blood test since your last RAI? Not even treatment with beta-blockers or antithyroid drugs while you wait for the RAI to work? There are many ways to deal with your thyroid levels if the RAI isn’t working for you, but you have to find an endo who will work with you and monitor your blood levels.
If you’ve been gaining weight it’s possible the RAI has worked better than you think. Insomnia and palpitations can also be a symptom of hypothyroidism, but you can’t know unless you have your labs taken.
You say your eyes are affected now as well. For that reason alone it’s especially important to monitor your thyroid levels. If you become hypothyroid it’s important to correct that as soon as possible so the eyes don’t get worse than they already are. For your eyes you should be seeing an ophthalmologist who sees Graves’ Disease patients (not just ANY ophthalmologist).
I know it’s difficult to handle these expenses without insurance, but right now it’s especially important that you see both an endo and an ophthalmologist, even if you have to work out a payment schedule or borrow from friends or relatives. If your last RAI was going to work, it’s had time now to do most of what it’s going to, so it’s way past time to see exactly what good it did for you and discuss where to go from there.
Please let us know when you’ve seen the doctors?
in reply to: Uptake Scan Today, RAI Tomorow #1073702I’m glad they gave him that much. It shouldwork! Now, don’t forget to let us know how it’s going for him. I hope it works sooner, rather than later.
in reply to: Uptake Scan Today, RAI Tomorow #1073698Amy, I"m sorry I can’t be of more help, but you will have to have that discussion with the people who are treating your son and ultimately trust their judgment. I can tell you that I had 10 milicuries and that for me it wasn’t enough. My uptake was 78%. As I mentioned though, the track record of predicting individual patient response isn’t really high. I’ll send you some reading material on that by email.
in reply to: Uptake Scan Today, RAI Tomorow #1073696Amy, Ski meant that since 85% of the RAI will be taken into the thyroid, that’s how much will stay in the thyroid to do the destruction of thyroid tissue. The part that isn’t taken into the thyroid will be eliminated, mostly in the urine.
A person who has an 85% uptake will need a lower dose for total ablation than a person with a 50% uptake, since more of the dose given is actually taken in and used to destroy the thyroid. Even so, every thyroid reacts differently to a given dose, and so there is not a good track record of predicting how much RAI it will take to have a given effect on a patient’s thyroid gland. Treatment failures do occur, and it’s also not uncommon for the dose given to be inadequate, resulting in slow control of hyperthyroidism followed by many months of slowly falling levels requiring constant adjustments of replacement hormone.
I know your son is hoping to control his hyperthyroidism quickly, and I suspect he would be disappointed to end up in the group of inadequately treated patients who had to wait many months/years to feel well again (as per my experience). This is the time to have a good talk with your endo and radiologist to make sure he’s receiving a dose that you can be certain will work quickly, so you’re not taking a gamble here. Ask how many milicuries he’s being given.
in reply to: Planning a tubal reversal and pregnancy… #1073747I had two surgeries with undiagnosed GD, within six months of each other. They were both 4-hour surgeries under general anesthesia, and I had absolutely no complications. I was in my early 40’s at the time. My GD diagnosis was made about six months after the second surgery, but there was no doubt in retrospect that I had GD (and was hyperthyroid). If I did okay, it seems like since you’re euthyroid, surgery for you would be safer than it was for me. What is the concern of your anesthesiologist, anyway?
Your doctors would at least have full knowledge of your condition and be prepared for the rare event of complications during the reversal of sterilization.
Many women choose to give birth while in remission or while on ATD treatment, with their doctors’ blessings. I wish you all the best, both for the reversal and for a healthy, safe pregnancy and delivery!
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