Forum Replies Created
-
AuthorPosts
-
in reply to: Double vision – help!!! #1063525
It is possible that your double vision issues are being enhanced by your current levels of thyroid hormone, but double vision is NOT CAUSED by your thyroid hormone levels. When we have thyroid eye disease, the muscles behind the eyes change in size and in flexibility. There are three pairs of muscles that operate each eye, and they must work in a synchronized fashion for us to have single vision. If any of the muscles is incapable of moving well together with the others we can get double vision. With my own TED, I went through a period of about two years (give or take) where I had intermittent double vision — i.e. some of the time it was OK, but looking in some directions would throw things off, OR the vision would just waver in and out of double. It was a horrid time. Then, when the "cold phase" of the disease set in, double vision issues minimized. The only time I get them now is when I am very tired, or hypothyroid. Why? Because fatigue, or too low a level of thyroid hormone work against the muscles in the eyes functioning properly.
So — what to do? First thing is an eye patch: you cannot have double vision if one of the eyes is patched. It takes some adjusting because using only one eye causes us to lose depth perception. But you can learn to accomodate the change if you practice. If you are patching your eye, either with an actual eye patch, or by putting gauze and tape over one lens of your eye glasses, ALTERNATE the patched eye. You will undoubtedly find that it is more comfortable to live with a patch on one of your eyes than the other, but if you don’t alternate the patched eye, it is somewhat possible to weaken it, which it would be better if you didn’t do.
Second thing: get adequate rest and recreation. The better your overall health, the better your vision will be (even if it is wonky).
Third thing: talk with your doctor about any anti-smoking aids you might use. In the U.S. there is a prescription drug that I found totally helpful. It is a type of anti-depressant, actually, that researchers have found works on the part of the brain that is addicted to nicotine. What it does is put in a wee small spot of clear thinking when you get the urge to smoke. At least that’s how it felt to me. I would feel the urge; my brain would tell me that "its OK to have just one, you’ve had a stressful day, dear." But that wee small bit of clear brain would allow me to think, "No, not this time." Or, more helpfully, "There’s no such thing as one, when it comes to an addiction." I tried lots and lots of ways of stopping, but the drug, which I only used for a couple of months, got me through the worst of things. So if your docctors there in the UK can prescribe something like this, it might help. I do wish you good luck.
in reply to: Nervous for the results #1063531Hi,, Krystal:
The thyroid not only makes thyroid hormone, it also stores it for future use. The drug you’re on helps to stop the manufacture of "new" hormone, but does nothing with the stored supplies. Until those stored supplies are used up, you won’t feel a whole lot different, because your thyroid cells will still be pouring out hormone. It takes a while longer than three weeks for us to start feeling the results of the drug, even though it starts working right away.
It also takes time AT normal levels of hormone for our bodies to heal from the effects of being hyperthyroid. So don’t expect to "feel" normal when you first reach normal levels. As James indicated, it takes some months.
in reply to: Hello from England, struggling with treatment #1063533If it is any consolation, REbecca, I had to fight an uphill battle myself to get properly diagnosed. I can totally sympathize.
As to why you are weak: while we are hyperthyroid, we lose muscle mass. Actual muscle wastes away. When we get back to CONTROLLED levels of normal thyroid hormone, over a period of months, the muscle starts to slowly return. I don’t know if we ever regain all of it — that may vary from one person to the next. But we can regain strength. SLOWLY. When my doctor had given me the OK to resume exercise once my hyperthyroidism was under control, I had an exercise physiologist help me to design an exercise program. He determined that my strength was 8% (yes, EIGHT percent) of what it should be for a normal woman my age! Obviously, going directly back to yoga, or whatever exercise I had been doing before the disease hit was going to take a long time. I began exercising with small paperback books as "weights."
Also, losing muscle means we cannot eat as much as we are used to, without gaining weight. Muscle loss lowers metabolism. When the muscle comes back metabolism rises again, but if we do not regain all the lost muscle it may never go back to what it was pre-disease. That means we have to adapt our calorie intake/exercise levels if we want to stay our old size.
We do get well again. It is a process though, not something instantaneous that happens just because we are in the "normal" zone for thyroid levels. I don’t believe any of us have a specific point within normal that is "our" normal. I have been treated for over 12 years now, and have been feeling quite good for most of that time. And the variou s blood tests that I’ve had have proven to me that I can feel good with a range of "normal" results. My endo and I try to tweak things so that I stay sort of mid-range, but TSH readings that are both lower and higher than that typically feel right to me as well. So, for the moment, try not to fret about what your normal might be. Just get to that normal range. Begin to exercise very slowly (baby steps) when your doctor says it is safe for you to exercise. Make sure that you are eating properly. And over time, you will begin to feel more normal as well.
in reply to: Hyperthyroidism: natural supplements or RI? #1063539I suspect what "toxic nodules" means is that there are clumps of thyroid cells that are going berzerker sending out thyroid hormone at toxic levels. If that is what is meant, then radioactive iodine treatment would kill off those toxic nodules, and leave the healthy parts of your thyroid intact. How could that be? With the discrete clump of cells over-producing thyroid hormone, the normal cells are shut down by the pituitary feed back mechanism. That mechanism is trying to suppress the production of thyroid hormone, and the normal cells are responding. The toxic cells would not respond. So when RAI is ingested the only cells that are active, are the toxic cells, and they would take in the radioactive product while the healthy cells would not.
It doesn’t matter much how you "feel." If your blood tests are showing excessive levels of thyroid hormone, you are losing muscle and you are losing bone. Your body is working too hard. And suddenly, one day, you will feel very very sick indeed if you allow that condition to persist. No natural supplement has been demonstrated to effectively control thyroid hormone levels, either. So some other treatment option is truly needed if you are hyperthyroid.
I don’t think that scientists have identified a single antibody that they know is responsible for TED. And, I’m not sure that if they had, you would be able to say for sure that you would either get TED or not, or determine how severe things would get. The situation is more complicated than that for some unknown reason. As Kimberly pointed out, TED is diagnosed based on physical symptoms rather than from antibody analysis.
in reply to: How to Choose / Tapazole/Thyroidectomy/RAI #1063563Hi, John:
I’m sorry your remission ended, and that you are facing this decision yet again. My own perspective on things may help (or not — but I’ll share it any way): ANY of our treatment options are better than remaining hyperthyroid. By far. Hands down. So while the options do carry risks (what medical intervention doesn’t??) they are far and away safer than the disease. With that in mind, you might be able to make a list of PROS (as well as the cons you so neatly itemized) of each treatment option, and it might help you to see which of the options you would prefer.
Also: RAI does not cause the eye disease. It has been shown that it may temporarily aggravate the symptoms of eye disease, in less than 20% of patients, but it does not cause it to occur. Taking a concurrent course of prednisone at the time of RAI has been shown to eliminate the temporary aggravation of symptoms.
As far as I know, our risk of developing the eye disease is NOT affected by our choice of treatment option.
In the hands of a good, experienced thyroid surgeon, the likelihood of complications is minimal. Less than one or two percent, if I remember correctly. But that would be something to check with a good thyroid surgeon.
And, the incidence of serious side effects to the antithyroid drug like tapazole is less than 5%.
I know the decision isn’t easy, and I hope you can come to peace with it before too long. Whatever you do, however, DO treat the hyperthyroidism. It is viscious on the body to let it continue longer than necessary.
in reply to: Good endo in Oklahoma City area #1063576If you know anyone who has diabetes, you might ask who they see for their disease. Often, endos treat diabetics as well as people with thyroid disease (and other endocrine problems).
As for the association that Shirley mentioned, I’ve seen mention of them put up here before. One of them is the American Association of Clinical Endocrinologists (whose website is something like aace.com/org). The only problem with using this list (and maybe others like it) is that the doctor pays a fee to belong. It doesn’t mean they’re not qualified — they must have certain degrees and certifications to belong — but it also doesn’t convey any sense of the quality of their practice.
As for "pushing" RAI. Sometimes there are good reasons for a doctor to push one patient towards RAI. I know you may not want to hear this option, but if you can get your doctor to point his thinking out to you, you need to consider his concerns carefully. For example, if there are signs that your body is not tolerating the antithyroid drugs well, or that they are not controlling your thyroid levels well, it might be time for you to consider removing your thyroid — either via surgery or RAI. Doctors do prefer RAI to surgery more often than not because RAI is considered somewhat safer. Like any other medical treatment, sometimes the antithyroid drugs just don’t work well with an individual patient. If THAT is what is going on with you, insisting on continuing them may be your worst choice. It is still your choice, but it might not be wise.
Anyway, I do hope you find an endo you can work with soon (or retrain the one you have to answer questions).
in reply to: need help today #1063586Marta — thyroid hormone is used throughout the body. If it is out-of-whack, EVERYTHING is out of whack. And, simply getting to normal levels is not enough to make us "feel" normal. It takes time AT normal levels — months of time — for the body to heal and for us to regain strength. So, try not to fret about the fact that you still aren’t normal yet. The medication dose is not stable, so your body isn’t yet in a place where healing stands much of a chance. It’s a slow process, but we do get well again.
Wishing you more good days,
in reply to: Trying to lose weight #1066200Hi, Sharon.
My thought as I was reading your latest post was "That is SO smart!!" You are very much on target. Muscle weighs more than other tissues, but tends to take up less space — so going by how the clothes fit, instead of what the scales say, is going to be a better guide as to your progress towards your weight goals and towards the stamina for that 5K race. Good luck with it. I hope its fun.
in reply to: Questions about Ted #1063686Hi, Susan:
There can be many reasons why the lids of the eyes puff up and appear swollen, and not all of them have to do with TED. That tissue is particularly sensitive, and swells with even minor injuries to the eye/forehead area. Allergies can cause swelling. Aging can cause the skin to sag a bit, and appear more swollen than we used to have. Etc. If TED is causing the swollen appearance it is due to the expansion of the MUSCLES of the eyes– it has little or nothing to do with the tissue of the eye lids themselves. Why? Because the eyes sit in a bony box: Except in the front, the eyes are completely protected by bone. When the antibodies aggravate the tissue of the eye muscles, of which there are several pairs (to move the eye around), those muscles enlarge and stiffen. When they enlarge there is NOWHERE for the eye to go but forward/i.e. to protrude a bit. And when the eye protrudes a bit, the fatty pads around the front of the eye are pushed forward and give that swollen appearance. That’s of course "if" TED is causing the problem. Whether or not that swollen look (IF it is caused by TED) goes away completely when the cold phase of the disease sets in depends upon how big and stiff the eye muscles remain — sometimes that enlarged, stiff status does not completely go away.
The reason doctors prefer to wait until everything has resumed normal before doing surgeries to correct the appearance of the eyes is that people who jump the gun, and have corrective surgeries too early can OVERcorrect. That means that when all the changes have finally taken place, you have an ongoing appearance problem that was caused by the surgery, not by the disease. Some of these problems are more difficult to correct than if you wait. It is also more cost effective to wait. (You only have to pay for one surgical correction, hopefully, not two.) It is also more gentle on your body to have fewer surgeries.
I know that it is hard to "sit tight" when your appearance is changing, and your vision is changing this way. I truly remember how scared I was. But unless the disease is actually imperiling your vision, it is generally better for your overall health to wait it out. You risk fewer long-term complications if you wait.
in reply to: Diet Support #1063711I would be interested in knowing why having both Graves and Hashimoto’s would be good news, too, dilemma. But typically from what I understand, when you have both sets of antibodies, one or the other will predominate. It might be that your endo thinks that the Hashimoto’s antibodies will predominate, in which case all you would have to do would be to take replacement hormone in sufficient dose to bring your levels back to normal. Should you find yourself moving back and forth between hyper and hypo, however, you might have to face having some of your thyroid removed. I know of cases where that had to happen. To prevent frequent episodes of hyper, the doctor counseled the daughter of a friend of mine to do that. Being hyperthyroid repeatedly isn’t any good for the body.
And, typically, a blood test is definitive for a hyperthyroid diagnosis. It must be treated. And if you are treating it with antithyroid drugs, then you don’t need an uptake test. It doesn’t really matter what caused it because the treatment options are generally the same. Obviously, for viral thyroiditis, you wouldn’t want to remove the thyroid; but for all the other possible causes the options of antithyroid drugs, RAI and surgery are the same. And, if it is viral, there are usually other symptoms of infection present.
I do wish you good luck with your future treatments, and hope you are feeling much better soon.
in reply to: One month post op –checking in #1063612Great news, Ruby! I am so happy to hear that you are doing so well.
in reply to: Will this get better? #1063662If you need evidence to support 1hc11’s comment about how the people posting to these boards are the ones newly ill, or having special problems, check back through our archives. This board goes back about 14 or 15 years. You’ll see that the stories NEVER change — but the names do. Once people get well again, they stop dropping in every day. Except for a few of us diehards — like 1hc11 and the moderators here — who try to help you keep things in perspective.
I hope you feel better soon,
in reply to: motivation #1063700An attitude that helped me a lot when I was where you are: Treat yourself as your own best friend. Think about whatever it is you think you "must" do, and then think about what type of advice you would give your best friend if she/he felt the way you do. Would you tell her to "Buck Up!!" Or would you give her a huge hug and tell her that whatever it was could wait, or not be done, or be done somewhat easier? I found prepared foods — yes a tad more expensive, but very time saving. I learned to line roasting pans with aluminum foil to save on clean up. I shelved a whole lot of activities that I really didn’t have to do. It lowered my stress levels, and it allowed me some breathing space. You may be able to find lots of little adjustments that help you out.
in reply to: I waswhen does actual healing process begin #1063693We do not really start to heal properly until we get our thyroid hormone levels controlled in the normal zone.
-
AuthorPosts
