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in reply to: OD Disappointment? #1175114
I’m truly sorry your results were not as complete as you had hoped.
We have had facilitators on this board from time to time who have had significant eye issues, and several of them had multiple operations to try to get their eyes back to looking more or less normal. Some of the people I’ve met at conferences have eyes that look completely normal — to me, if not to them — after their surgeries, and others do not. So, in answer to your question, yes, there are people out there who were disappointed in the OD results. They may not, however, be posting to this board at this time.
in reply to: * TSI/TSH results – confused * #1175108It might be helpful to go to the Mayo Clinic website discussion of TSI and carefully read it. It might dispell some of the confusion. Or not. I will fully admit that I could not wrap my mind around all of it. But what I did understand indicates that we patients should be very careful of making assumptions about what such a test (and all of our tests) show or do not show.
I will point out two comments from the site. First (and these are in my own words, more or less): An elevated TSI at the end of a course of ATDs is highly predictive of relapse. Ok. That seems straightforward. But then there was the “But.” But, conversely, a normal TSI index is NOT predictive of prolonged remission.
I suspect this goes back to something my endo told me when I asked her why she was not routinely testing my antibody levels. Her response was that antibody levels rise and fall for no well-understood reason. So having normal levels of antibodies at one point in time does not mean that those normal levels will continue. And, inasmuch as there’s almost nothing to be done to control those levels, it’s all a crap shoot.
And the other item from that Mayo website that I think all of us should keep in mind was a caution: Positive results of the TSI test are strongly indicative of GRAVES, but do not always correlate with the presence or severity of HYPERTHYROIDISM. In other words, the TSI test doesn’t show if you are sick, or how sick, well, or how well. Your doctor will rely on other tests to determine that.
in reply to: Went to the endo today… #1175045It is supremely important, Khadijah, to have a well-qualified and skilled surgeon do the thyroidectomy. Someone who does lots of thyroidectomies with few complications is the main thing you should be looking for — not how fast you can get in for the surgery. As long as you are taking the ATDs, your symptoms should start to fall under control, so even though you have to “wait” you will not necessarily be waiting “sick.”
in reply to: Red stinging legs? #1175064Hi, Robboford: Pretibial myxedema is rare everywhere. Only about 1% of Graves patients get it. And, it typically does go hand-in-hand with the eye disease. You and I “won” the trifecta! I have a dermatologist appointment next week, because I think mine has come back from about a 10 year hiatus. ; ( We’ll see.
As for using the steroid creams constantly: the problem is that they tend to radically thin the skin, allowing for infection. It’s a vicious cycle, obviously, because if you are in pain from it, and the creams help to alleviate that, then of course you want to use them.
Pretibial myxedema isn’t always painful – I think it depends upon where the “welts” develop, and whether they are putting pressure on a nerve. And, emwb, I don’t know that “rash” is the appropriate term for it, although that is one that people use form time to time. For me it was thickened, red patches of skin that resembled the rind of an orange.
in reply to: Went to the endo today… #1175042The Tapazole is one of the drugs we call ATDs — antithyroid drugs. What it does is create a chemical block to the production of thyroid hormone. Getting our hormone levels under control before surgery is important — it helps to make the surgery safer. The reason that you were told not to start it if you were going to opt for RAI is that we need to be OFF any ATDs a week or two prior to RAI to open up the thyroid cells to receive the treatment iodine. It isn’t that you cannot take it and then have RAI, but that taking it now would mean that you would have to stop it for a period of time before you could have RAI.
Most of us tolerate the ATDs well. But there is a small risk to them. Typically, we are warned of getting our blood levels checked (for white blood cells) if we get a severe sore throat. The drug can lower our WBC count. Sometimes, too, our liver enzymes elevate when we are on this type of drug, so your doctor will probably check those levels if you are on the drug for any length of time. Other, slightly more frequent (but still rare) side effects include muscle/joint aches or hives.
in reply to: Graves and Menopause? #1175032Being hyperthyroid causes similar types of body changes to menopausal symptoms. It is not necessarily easy to distinguish between them. I thought I was in menopause when I was diagnosed with Graves. It turned out that I got to go “through” menopause twice, because the first time the symptoms were all Graves. As soon as I got my hormone levels under control, periods came back and night sweats went away. For three or four years.
in reply to: Husband’s definition of support… #1174912My husband wasn’t at all supportive, either. I had to be strong for myself. In the end, that wasn’t such a bad thing. But know that I do understand how frustrating it is to be ill and not have the people we love help us the way we need to be helped.
in reply to: New to Graves #1174953First of all, welcome. Second — don’t take advice from unknown people online about what you should do, or not do, treatment-wise. We are not doctors. This is a major issue for you to face, and there’s a tendency online to discuss treatment options in the same way we approach football games or politics. (If someone decided to do “X” they then become a cheerleader for that approach. It’s understandable, but it doesn’t help you to make a wise decision.)
Understand, too, that boards like ours are weighted towards illness, not health. People who get appropriately treated for Graves, and get healthy again, do NOT tend to populate online boards. It takes time out of our busy days to read and respond online, and once folks get their health back — no matter which treatment option they choose — they disappear. You can verify this for yourself by going into our archives and looking at who is posting and what they are saying. The stories are the same, year in and year out. The names change all the time.
There’s a bulletin board thread at the top section, posted by Kimberly, about treatment options. There are pros and cons to each one. And each of us has specific other medical issues (like asthma, for example in your case) which gives a slightly different slant to how we need to look at our treatment options. That special slant needs to come from our medical doctors. So, what you need to do is have a sit-down with YOUR doctor, and discuss the pros and cons of surgery with him/her. There may be valid reasons why your doctor does not side with surgery. And there may not be. You need to find it out, though, through discussion.
in reply to: New and Seeking Advice #1174949Being hyperthyroid makes us extremely ill. So, the fatigue, irritability, etc. goes hand in hand with being ill. You need to get your thyroid levels under good control.
No matter how you approach treatment (antithyroid meds, RAI, surgery are the ONLY valid approaches), there can be weight gain. We lose muscle mass while hyperthyroid, which LOWERS metabolism. Some, if not all, of the muscle comes back after we are appropriately treated, and this raises metabolism. But many people complain that there are weight issues they never experienced before. I am unconvinced of that, but you will see it online, including here. I do think we need to be careful in our eating habits, once we’ve been hyperthyroid for any length of time. But I have been able to control my weight by eliminating “empty” calories (sugars, artificial sweeteners, etc.).
The pill you don’t want to take after RAI (or surgery) is chemically identical to the body’s own T4. The only side effect issues for it involve having too much of it (we become hyperthyroid) or having too little (hypothyroid). Inasmuch as the antithyroid drugs (ATDs) didn’t agree with me, I don’t find taking this one pill every morning to be any type of hardship. Many people can take the ATDs safely, with good results. And approximately 30% of these patients do experience a remission — which, by definition, is temporary. But remissions have been known to last years, and that might be something you want to discuss with your doctor. Depending upon the size of your thyroid, and other medical factors, your doctor might think you are a candidate for remission (or not).
in reply to: Husband’s definition of support… #1174900You know, Khadijah, some people believe they “have” Graves, even when their thyroid levels are controlled in the normal zone. It is a question of attitude and semantics. The friend’s wife may be taking antithyroid meds, or have done some other treatment option which now has them in the normal zone for thyroid hormone. But if YOU are hyperthyroid right now, your doctor is the person to tell you that you can run, not your husband, and not your husband’s friend. If you are currently hyperthyroid, you are ill. Period.
We do get well again once our thyroid hormone levels are controlled in the normal zone, by whatever means we use (antithyroid meds, or removal of the thyroid). So keep that thought.
in reply to: New here with a dilemma #1174886Hi, Khadijah, and welcome to our forum.
Typically, we are told not to exercise while we are hyperthyroid. That is because the excess thyroid hormone not only causes our hearts to beat too fast (and inefficiently, at that), but because it can lead to arrythmias which are dangerous. So, unless your doctor has specifically told you it is ok to dance, you should not.
Once you get your levels back under control, by whatever means, you need to understand that you will probably have to rebuild muscles for strength and stamina. We lose actual muscle mass while hyperthyroid. It tends to slowly come back, but it needs to be restrengthened wisely. In other words, when your doctor clears you to dance again, etc., do not be discouraged if you can only dance for 15 or 20 minutes before fatigue sets in. Your body has taken a serious health hit, and needs to rebuild itself.
As for which removal option is the best for you (RAI or surgery), I think you need to listen carefully to the pros and cons given to you by your doctor. The radioactivity from RAI, though is relatively small, and is completely gone from the body in just a little over a month. (The radioactive element used has a very short life span.) I think Kimberly posted a discussion of the various treatment options in a section at the top of the first bulletin board page. It can help to read through it before you talk with your doctor. As to whether you will be able to drive your child to school soon after surgery, I do not know. Typically, we are told not to drive after surgeries for a while. But that would be a good question to ask your doctor.l
If you do decide on surgery, make sure that the surgeon you choose is well-qualified, does LOTS of thyroid surgeries every year, and has a low rate of complications for those surgeries.
in reply to: Methimazole dose #1174865Just because you feel normal while taking a dose the antithyroid drug, that does not make you in remission. These drugs work to interfere with the thyroid cells’ job of making thyroid hormone. They create a chemical block to the production of thyroid hormone. If we are taking the proper dose of them, we are at normal levels of thyroid hormone, and should (eventually) feel normal. If you were in actual remission, the dose you are on would make you hyPOthyroid, not normal. Don’t compare your dose with someone else’s either. It is individualized, much like Goldilock’s “chairs.” You are looking for YOUR dose, not the dose that someone else needs to take to be normal. It might well be that you can tolerate a lowering of the dose, but you will not be able to tell that until you’ve have lab work done and seen the doctor.
You might try calling your endo every few days to see if there is a cancellation that you might take advantage of. Sometimes that can make a difference, if only by keeping your name in the scheduler’s mind.
And good luck with the storm. It sounds like it is going to be nasty along a wide swatch of the NE.
in reply to: Back to extreme fatigue #1174871It’s important to get copies of your lab reports, AmyG, so that you can follow along and track your progress.
But most important is for you to understand that “getting to normal levels of thyroid,” does NOT mean you will feel normal right off the bat. Given the current hurricane going up the coast, the analogy may help. Hyperthyroidism in the body is a bit like having a hurricane tear up a community. It causes damage. Just because the winds go away things are not instantly normal. It takes time to rebuild. And it takes time to rebuild your body after being hyperthyroid. To build up stamina, you must exercise (once your doctor gives you the all clear for exericise.) After RAI my body was very tired — but it was tired from overworking for the previous every how many months. I needed to continue to get appropriate levels of rest and exercise for a while.
You need to be patient, and work with the process. Your doctor cannot give you replacement hormone while your thyroid hormone levels are “normal,” because that would undoubtedly make you hyperthyroid all over again.
in reply to: Severe memory issues #1174390Just a word of caution — I don’t know where you are pulling your information from, online, but be very careful of it. Just because someone, somewhere in the web world states something as a fact, that doesn’t make it a fact, or true. A study done a number of years ago about “medical information” websites — and I have forgotten the group doing the study — indicated that approximately 80% of the medical information online was either out-dated or bogus. If you are going to a well-qualified specialist, and he/she has never heard of something you find online, that may be the reason.
in reply to: Labs are a no-no here but… #1174855Gee, Naisly, I am so sorry for what you are going through. And all of this is absolutely NOT normal. I do think you need to nag the endo. AND the GP. Send copies of the lab results to the endo with highlighter and stars and question marks to make sure he sees them.
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