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in reply to: thyroid and eye disease #1172286
I live part time in the same area as Vickirn, and while I did not go to Bascom Palmer, I, too was referred to an oculoplastic surgeon during my “hot phase”. It may be more common here than other places, Shirley.
The red flag for me is the suggestion of removing the thyroid before having surgery because the “thyroid” was attacking the eye muscles. If you encounter this same opinion elsewhere, please politely ask the doctor for evidence — i.e. documented studies in high quality peer-reviewed medical journals. I seriously doubt they will be able to supply you with it.
in reply to: thyroid and eye disease #1172285I live part time in the same area as Vickirn, and while I did not go to Bascom Palmer, I, too was referred to an oculoplastic surgeon during my “hot phase”. It may be more common here than other places, Shirley.
The red flag for me is the suggestion of removing the thyroid before having surgery because the “thyroid” was attacking the eye muscles. If you encounter this same opinion elsewhere, please politely ask the doctor for evidence — i.e. documented studies in high quality peer-reviewed medical journals. I seriously doubt they will be able to supply you with it. And if he/she is unable to provide evidence, I would suggest consulting with another doctor.
in reply to: Parent of a three yr old Grave’s patient #1172411My heart goes out to Taylor — and to you. This has to be a scarey time for her.
We do have parents of children with Graves who contribute to our board from time to time, but it is probablematic as to whether they are following the board with any consistency. People tend to come to boards like this one when there are problems. When life is going smoothly, they tend to let us drop.
I don’t know if the foundation keeps a list of parents willing to talk, as needed, with other parents. That might be a good idea to pursue. Anyway, Kimberly will know more about those types of things, and may be able to help.
I have not heard of cyclical vomiting being associated with children with Graves. That doesn’t obviously rule things out — I’m not a medical professional. But many of us do indeed have other health problems that are not caused by Graves.
Wishing you well, and good days for Taylor.
in reply to: My decision #1172330Rule #1: Please beware of anyone online who wants to sell you something. They are MARKETING their product, not necessarily providing you with factual information.
in reply to: Not Stabilizing on Tapazole #1172255I am sorry to hear that you are hyperthyroid again, and with such “vigor.” I do hope you are feeling better soon.
in reply to: Okay. What would you do? #1172219Just make sure that the surgeon you go to does lots of thyroidectomies, with a very small percentage of complications (cut vocal cord nerve, etc.). Like everything else in medicine, the fellows with the most practice and the fewest goofs are the ones to go to.
in reply to: Okay. What would you do? #1172217Just a note of comment: heart palpitations are not necessarily a sign of irregular heartbeat. A doctor would need to diagnose whether or not there is a problem. Check something like the Merck Manual of Medical Information, and you will find that palpitations are defined as “awareness of one’s heartbeat,” and that such awareness varies from one individual to the next and that it often does not result from some underlying disease. It can be a sign of underlying disease, but it doesn’t necessarily, or typically. Periodically people have unusually strong contractions of the heart that they can feel. These occur for a variety of reasons. Hence the need for a doctor to diagnose things. I’ve always thought the palpitations that I noticed while hyper were more a result of my heightened nerve reactions to everything. But again, consult your own doctor.
in reply to: Dark Patches On Face??? #1172238Short answer: see a dermatologist for a more definitive idea of what is going on.
In my case, I have some sun damage which caused a couple of darker marks on my face. If you do not wear makeup, do you at least put on sunscreen? As we age, the outer layer of our skin apparently thins out, and sun damage will be more of an issue as time goes on.
in reply to: two years before diagnosed #1172235Welcome to our board, rdial.
Two years undiagnosed is harsh. I was only nagging my doctor for about six months — although in retrospect, I know that I had been hyperthyroid about four years previously for a bit of time. Anyway, six months was bad, so my heart goes out to you having been hyperthyroid for two years.
We’re not doctors here. So take whatever opinions are expressed on the board with a large grain of salt.
I have been told by an endocrinologist that once we regain controlled normal levels of thyroid hormone that the muscle begins to return. Whether all of the muscle returns or not, I do not know. It is not strong muscle that returns — we need to go about retraining it, strengthening it. And we need to start with baby steps: if we slam back into exercise we pull muscles and get shin splints and the like. Listen to the muscles when you start your strengthening exercises. For example, in order to do the required number of reps with my biceps, the heaviest “weight” I could use at first was a small paperback book. Things improved rather quickly, but at first my physical therapist told me that I had only about 8% of the strength of my peers.
As for bone, I think it is unlikely that we recoup the bone. But I do not know.
Your hair issues are due to the recent change from hyper to hypo and back. It will normalize. There was one period of time when my hair was shedding as badly as my collies’ fur. I have lots of hair, so it never was very visible to others (other than the clumps lying about). Some folks with less thick hair notice the thinning more. But it typically goes back to normal rather quickly once we are no longer on a hormonal roller coaster.
We all expect that once we get to normal levels of thyroid hormone we will rather instantly feel well again. We are typically disappointed. It takes time — weeks or sometimes months — AT normal levels of thyroid hormone for our bodies to heal. Try to think about things as if you have just experienced an internal hurricane. The winds are gone, thank goodness. Now it’s time to rebuild your “house.” And, once you start trying to regain your activity levels, or especially exercise levels, remind yourself to take baby steps at first, to test things out. If you try to do too much, too soon, before the muscles have regained strength, you can strain them. Or tire easier than you think might be appropriate, and get discouraged. Recovery is a process.
Hi, marlomole, and welcome to our board.
For the most part, Graves disease is very treatable. There are two basic ways that we can regain control over our thyroid hormone levels (removal of the thyroid, or use of so-called antithyroid –ATD– medications), and with normal levels of thyroid hormone reestablished, we can go back to leading normal, healthy lives. Our treatments do work to give us back our health. We typically have to take some form of medication, but we do regain our health.
Try to keep in mind that while the disease is an autoimmune one — caused by antibodies — what makes us actively ill is the aberrant levels of thyroid hormone. Regain control over the thyroid levels and the symptoms go away, unless you are talking about the eye disease (TED). TED has is also caused by antibodies, but has nothing to do with our thyroid levels.
There is usually a genetic link, although not necessarily a direct one. It is said that some families have a “predisposition” to the development of autoimmune problems. But it does not necessarily involve just Graves disease. In some families other, extended relatives may be on synthroid to raise their thyroid levels. Or perhaps someone had arthritis, or prematurely gray hair, etc.
How long your brother may have had the wrong levels of hormone is strictly a guess. It’s possible that there was an extended period of time when things were only slightly “off.” Or not. There’s no way to tell. But the fact that the doctor thinks things were caught early is good. The longer we are ill, the longer it takes for our bodies to recover.
in reply to: Overwhelmed, frustrated & worried #1172160Hi, Alexis:
People who have Graves can have fluctuating thyroid hormone levels. Antibody levels rise and fall for no well-understood reason. Sometimes our symptoms go away long enough to be called a “remission.” Sometimes, they change more frequently and the patient’s dose of ATDs has to be adjusted more often than other people need it done. It doesn’t mean they don’t have Graves. It just means that their antibody levels are more volatile.
in reply to: shoulder post op and graves #1172173There are two types of bone cells — cells that build bone, and cells that remove bone. We are adding deposits to our “bone bank” until we get to our twenties or so, at which time, our bone mass starts to diminish. We can try to slow things down with weight bearing exercise, and a proper diet (which includes the proper levels of Vitamin D to enhance calcium absorption), but we cannot eliminate it. It is a part of the aging process, in reality. For whatever reason, while we are hyperthyroid, the cells that remove bone are stimulated more than the cells that build bone, so we lose bone mass while we are hyperthyroid. Taking steroids, like prednisone, also leads to bone loss, and many of us take steroids for eye issues, pretibial myxedema etc.
As to why the bone loss did not show up on the bone scan. They don’t typically do a full skeletal scan. They look at one or two areas (hips, heels in my case for some reason) where bone breakage can be more life-threatening. (Breaking a hip is often a precursor to complications that can lead to death, for instance.) Breaking an arm isn’t likely to be as big of a problem. And we lose bone from different parts of our bodies at different rates.
We live in an age of specialization. There are doctors in my area that “do” only hands. I don’t expect them to understand Graves. It would be nice if they did, but they typically don’t. There just are not that many folks who get Graves.
in reply to: Rats! Relapsed #1172169I’m sorry to hear you have relapsed. I hope you can get things under control again and soon.
in reply to: Overwhelmed, frustrated & worried #1172154Hi, Alexis — surgery is a viable option for some patients. But one size doesn’t fit all. Just as you were unable to take the antithyroid meds and other people are, your doctors both seem to be telling you that you should be avoiding surgery.
I truly do not know about the breast milk issue. I’ve never encountered the issue in all my years monitoring this board. I do hope that you and your doctors can determine a good course of action for you.
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