[Bobbi]

in reply to: Post RAI -In Range TSH – Still Feel Bad? #1066282

There is a test for T3 that could be done to check out whether or not you have a conversion problem.

[Bobbi]

in reply to: thyroid injections? #1066357

Nancy may not spot this question quickly, snapshot, so I will try to put words in her mouth. ” title=”Smile” /> Compliance means that the person is actually taking the medication the way they have been instructed to, in the amount they were instructed to take.

[Bobbi]

in reply to: pregnancy/breastfeeding with Graves’…treatment options #1066290

When someone has Graves disease, the normal mechanism for controlling our thyroid hormone levels is broken. Antibodies have disrupted the process. During a pregnancy, the immune system adjusts, so that antibodies do not attack the "alien" tissue of the baby in the mother’s body, and so many of us who are hyperthyroid and on antithyroid meds (ATDs) like PTU, find that we become less hyperthyroid over the course of the pregnancy. (Antibody levels are lowered, symptoms go away.)

Normal thyroid hormone levels are important for a lot of reasons when it comes to pregnancy issues. If they are out of whack, they can make it harder to get pregnant in the first place. Both hyper and hypo conditions have been cited in the literature as causing infertility. So, the first thing you need to do is get those levels under control. If the ATDs are not controlling your levels, it can make it harder for you to get pregnant. If you have had surgery, or RAI, you need to be at controlled normal levels for the same reason.

In addition, the developing baby needs to have access to adequate amounts of thyroid hormone in order to have his/her brain develop normally. HypOthyroidism is a leading cause of mental retardation in the world.

So what this all amounts to is that during a pregnancy, the mother who has Graves is monitored frequently for her thyroid levels to keep them in the normal zone.

The ATDs are known to cross the placental barrier into the developing baby. They are also known to cross to the baby in breast milk. PTU has been the ATD of choice if a hyperthyroid woman is pregnant, because it does so in more limited percentages than does methimazole apparently. We have seen successful pregnancies reported through the years of this board, from women who went through their pregnancy while on PTU.

Women who have had their thyroid removed, and are on replacement hormone still have to be monitored during pregnancy to be sure that her thyroid hormone levels remain in the normal zone. There may be a need to adjust the amount of replacement hormone during the course of the pregnancy. (Typically "some" thyroid tissue is left after either surgery or RAI, and if there is enough of it left, our replacement needs will fluctuate over the course of the pregnancy.)

We are typically advised to wait a minimum of six months to try for pregnancy after RAI. The rationale for this is twofold. First, to err on the side of caution, it allows for the most mature eggs from the ovaries to be discarded during menstrual cycles. The theory is that if radiation is going to affect an egg, it would be the ones that are most active, most ready to be released from the ovary. Second, it allows for time for us to get to normal controlled levels of hormone, and, more importantly, to HEAL after the ordeal of hyperthyroidism. The timing can vary, because some of us take longer to hit normal, controlled levels of hormone than others. Surgery is typically a bit faster that way. But alllowing our bodies to return to a healthy state improves the likelihood that a pregnancy will go smoothly.

I hope this information helps,

[Bobbi]

in reply to: Husband died of Graves #1066345

Aimee, I don’t know if there is a way to tell precisely how sick someone is at any given point in time with the hyperthyroidism. Pre-existing health conditions, perhaps unknown to a doctor, like an unknown heart weakness, can make hyperthyroidism more dangerous for one person than for another. Rare events, like arrythmias and thyroid storm, are not predictable. And, who in the world would think of a joyous birthday celebration as "stress?" The vast majority of people nowadays who are diagnosed with Graves/hyperthyroidism get well again, because of modern treatments that work. In the bad old days, before antithyroid meds (like PTU) and RAI and modern surgery techniques, it was very common for people to die. But since they’ve been developed, most of us regain our health. So our doctors do not treat things as a death sentence any more.

A few years ago, my oldest daughter died unexpectedly. I went through the same type of second guessing of myself that you are experiencing. I still have those moments of wondering whether I could have done something differently, if only I had "known". But in situations like this we only truly know with hindsight, and it doesn’t do us a whit of good.

My heart goes out to you.

[Bobbi]

in reply to: Do these symptoms EVER get better or go AWAY?? #1066340

Well,I am about eight years out of TED, with my eyes having gone back to almost normal appearance. I still have dry eyes, although perhaps not as bad as it once was –or is it that I’m just used to that aspect of things. I still wear sunglasses when I am outside: the kind the shield both the top of the eyes and the sides. I am not quite as sun sensitive as I once was, but I am much more comfortable with the sunglasses on than not. When I lost my sunglasses while visiting Philadelphia in the winter time, and could not find another pair, nobody in the family felt that this was a big deal, but my eyes hurt from theglare off the snow. So, I suppose what I’m saying is that some of the conditions do persist. My vision, however, is constant, and I do not require the frequent changes of lens.

There are plugs that can be put into the tear ducts to help with the dry eyes if they are a problem. That has helped many people with the tears issue.

[Bobbi]

in reply to: thyroid injections? #1066352

I’ve never heard of shots, but one of the other facilitators might have.

I did want to mention the experience of a friend of mine who was on a similarly high dose of replacement hormone and not "responding" like your sister. She had occasion to switch doctors, and the new doctor made a comment about taking her replacement hormone first thing in the morning, and waiting an hour or so before taking ANY other medications or eating anything. My friend, who has heart disease, had been taking all of her medications at one time because no one had every cautioned her to separate her thyroid medication from the others. She was able to lower her dose of replacement rather significantly. So, check that your sister is taking it and waiting at least a half hour before breakfast. Calcium supplements, multivitamins, etc. should be taken no sooner than four hours after the replacement hormone. Any other medications? Have her talk with her pharmacist about how best to take them in relation to her thyroid meds. And if she is taking supplements of some type or other, she needs to be careful of those, as well.

If any of these comments resonate with her, please have her consult with her doctor about how best to change the way she takes her thyroid hormone while insuring that she is not taking too much thyroid replacement.

[Bobbi]

in reply to: Husband died of Graves #1066342

I am so very sorry for your loss. It was a situation like you describe which motivated Jake, one of our facilitators and best supporters to start this bulletin board with Dr. Patterson long ago. One of his relatives had died as a result of hyperthyroidism. Our goal here is to help people to understand the dangers, and the treatment options.

Hyperthyroidism is a danger to our hearts in two ways. The excess of thyroid hormone makes it beat too rapidly, and it is less efficient when that is happening. But that frantic beating wears at the heart, can weaken it. More dangerous yet is that excess levels of thyroid hormone have been known to interfere with the rhythmic beat of the heart, and cause arrythmias like your husband experienced. Arrythmias also occur, though, in people who are not hyperthyroid, too. If there has been any pre-existing weakening of the heart prior to Graves, hyperthyroidism increases the dangers.

Let me point out that your husband may have been somewhat hyperthyroid long before symptoms started puzzling him. The weight we lose is not just flab weight: some of it is loss of muscle. As you noticed, the large muscles of the arms are one of the places where we can actually see muscle loss as hyperthyroidism is allowed to go on. (The legs and chest also often show that muscle loss over time.) Joint pain can start as the weakened muscles put stress on them. But we do not start really "seeing" muscle loss immediately (other than seeing weight go down, typically) so the fact that these symptoms became apparent early on for you may indicate that he had been, perhaps slightly hyperthyroid for a while. It can be an insidious disease that way. I have read articles by doctors about how even minor levels of hyperthyroidism need to be treated because of the dangers. But minor symptoms can be ignored and often are.

When we start on the antithyroid medications like PTU (the medication your husband was on) they begin immediately to interfere with the production of new thyroid hormone. But, unfortunately, the thyroid not only makes hormone, it stores it for future use. And it often takes two or three weeks for our stored supplies of hormone to run out. So we can remain hyperthyroid for those two or three weeks of early treatment. Our doctors often prescribe a "beta blocker" like antenolol to try to protect our heart until thyroid levels are brought under control. But this is still a potentially dangerous time.

And, yes, being hyperthyroid makes many of us horridly ill. Some folks are lucky enough to be diagnosed early by routine blood tests, and we can have a hard time convincing them that these treatments, which often result in some (temporary?) weight GAIN are necessary. But those of us who did not get diagnosed early, like me, know just how sick this disease makes us, and how dreadfully ill we felt. And the problem is that we can actually BE dreadfully ill, and not "look it." Our friends and families often do not believe we are as sick as we feel, because we don’t look it.

I don’t know if any of these comments are helpful to you in any way. I hope so but I obviously don’t have "answers." I do think, however, that your post may be a true help to someone newly diagnosed who may be resisting treatment out of fear of weight gain, or due to denial. You may have helped to save a life. I hope that is a comfort, however small.

[Bobbi]

in reply to: Prism glasses #1066393

I’ll add a "ditto" to Ski’s comments. My eye doctors tried to assess prisms for my double vision issues and it was impossible to find a prism that worked all the time. If your vision fluctuates in and out of double they are no help.

[Bobbi]

in reply to: Things that inhibit t4 to t3 converstion #1066379

Let’s take "cruciferous vegetables" from the list as an example. Yes, there are compounds in certain vegetables that are known as "goitrogens". These compounds have been demonstrated, somehow, in a laboratory, to cause goiter formation, hypothyroidism, whatever. A lot of lay people have latched upon this information nugget to say "Aha! We can control hypo/hyper/goiter/whatever by not eating X." Actually, no, we cannot. The problem is that we would have to eat these veggies by the TRUCKLOAD in order to have a real problem from them. Demonstrating in laboratory conditions an "effect" does not necessarily translate to a real-life effect for human beings. Lab rats are given extreme quantities of a substance, for example, to see if there is any adverse effects.

So, we have to take lists/information like this with a very small grain of salt. Quantities DO matter. And, very often, the quantities used to demonstrate an effect in a lab have no reality in the normal human context.

[Bobbi]

in reply to: Newby #1066359

Hi, and welcome to our board.

Not everyone loses weight while hyperthyroid. Most do, but some actually gain weight. One of the harmful aspects of being hyperthyroid is that we lose bone over time, and muscle mass over time. Losing muscle mass, particularly plays havoc with our metabolic rate: muscle, even at rest, burns more calories than other tissues do. So, when we lose muscle, we cannot eat as much as we normally do without gaining weight. When we get our thyroid hormone levels back under control, and in the normal zone, muscle starts to slowly return. It doesn’t matter what treatment option we use, once our thyroid levels normalize, muscle starts to return. This looks to many people like weight gain, and it is, but it also signals a rise in metabolism, allowing us to eat more without gaining weight. When we are healthy again, we can go back to our normal activities, and our weight should normalize over time.

[Bobbi]

in reply to: strabismus surgery #1066399

"Strabismus" is the technical term for double vision.

[Bobbi]

in reply to: TSH jumped from .7 to .118 in 4 days! #1066371

I know this experience is terrifying. I did not land in the hospital, but I did have an abrupt, and toxic increase in thyroid hormone about five or six years into my replacement regime. I experienced chest pains and shortness of breath, and went to an urgent care place that started prepping to put me in an ambulance. I talked them into doing a preliminary ekg (which was normal, if fast) and then doing a blood test for thyroid (which was way too high). The remedy was to lower my dose of replacement hormone and redo blood work after three months. At three months, I needed to raise the replacement back up to almost the same level I’d been on before. It is unsettling, to say the least.

What can cause it? Well, we have an antibody-generated problem, so if the antibodies surge up in numbers, and if there is viable thyroid tissue left after RAI (and there usually is "some"), that can change the amount of replacement hormone we need temporarily. Antibody levels change for no well-understood reason. (On the opposite side, if thyroid tissue that is left after RAI dies off — which is the normally expected progression of antibody attack — then we could find ourselves needing more replacement over time.)

The second thing to look (or maybe this should be the first) is any change in your other medications, eating habits, or manner of taking the replacement hormone. For example — say that you were taking your replacement hormone every day at the same time that you took a multivitamin, and then you found out that you should space these pills by about four hours (which you should, btw). If you started spacing them, then the amount of replacement you would need to take would probably lower. Elements of the multivitamin can "bind" with the thyroid hormone while in the digestive track and prevent it from being absorbed into the body. So stopping that practice would free up more of your replacement for absorption. Foods can do the same sort of thing. That is why we are told to take the pill on an empty stomach and wait a while before eating. That is just one example, and there can be others. But look for some type of change, even if it seems relatively minor. Maybe it made a difference. If something like that did go on, you can make sure to avoid it in the future.

There can be other reasons as well, which happen infrequently, thank goodness, that we have no control over. The good news is that when we are on replacement, adjusting the dose typically puts us back into normal levels rather quickly.

I do hope you are feeling much better, and soon.

[Bobbi]

in reply to: Graves’ Eye Disease #1066475

Hi, and welcome to our board, frefluterb.

Unfortunately, the eye disease can crop up at any time — some folks get it long before their thyroids go wonky. I had it many years ago, and it is frustrating and frightening to have to wait and see. That is, however, the typical approach our opthamologists take. They watch it. If it gets severe, there are things that can be done besides steroids. Radiation to the eye muscles is sometimes used as a temporary measure to reduce swelling. In severe cases, doctors will operate to open up more room for the optic nerve. But in a lot of cases, nothing needs to be done but wait it out. That is what happened to me. And once the hot phase subsided, my symptoms gradually went away, until things are almost back to pre-disease normal. I still get double vision if I am very tired, but that’s about it.

Wishing you well,

[Bobbi]

in reply to: HypEr vs. HypO #1066420

One thing to keep in mind, snapshot, is that we are never left hyper OR hypo. We are given medications to put us back into the normal zone. When we have had the thyroid removed, and are on the proper dose of replacement hormone, we are NORMAL. When we still have our thyroids, and are on the correct dose of ATDs, we are NORMAL. The technical term is "euthroid." Normally healthy people are "euthroid." We are only hypO or hypER if we are not being treated. And that isn’t an option.

[Bobbi]

in reply to: strabismus surgery #1066397

Hopefully, Jake will jump in here to give you info about his experiences with strabismus surgeries. You can possibly search the archives, too. He has contributed lots of information about the various eye surgeries. One of them, early, early on was entitled something like Eye Surgery 101.

Anyway, I just wanted to say that getting the green light for the surgery is great news! I have heard from people who have had this procedure done that this particular surgery is pretty easy, and definitely helpful.

[Author]

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