[Bobbi]

in reply to: Newly diagnosed – took RAI today #1061403

Hi, and welcome to our board.

Don’t be surprised if, about a week from now, you feel much more hyper than normal. The beta blocker you are on will probably act to mask some of the symptoms, but as thyroid cells die off, they released stored supplies of hormone all at once. They are not making "new" hormone, so this period of enhanced hyperness is limited typically to a few days, but ifyou haven’t been warned about it, it can be worrisome.

You will likely also experience a soreness in the throat area. Some folks (like me) don’t notice it much, but for others it can be quite sore.

Gradually, you will start to feel a bit better. It takes some time for RAI to do all of its "work" — a few weeks typically. Your doctor will call you in for more blood tests after a certain amount of time, to double check the progress, and hopefully to get you started on replacement hormone as you go hypothyroid.

Then, there will be a slow-ish (to us, anyway) process of trying to find the best dose of replacement hormone for you. Replacement hormone IS thyroid hormone: it is chemically identical to T4. So too much will make you hyper again, and the doctors try to avoid that by double checking things frequently at first (every six weeks to three months, ususally).

I do hope you are feeling better soon.

[Bobbi]

in reply to: help me please #1061413

First off, Andie, please only post once. There is a long string of posts from you, waiting to be approved. What I suspect happened is that you didn’t see your post appear, and then posted again. Several times. We require posts from "new" members to be approved before they even appear on the board. That is because the board was experiencing pornography and lots of SPAM. When moderators/administrators have to approve the initial post, it saves us lots of time, and –trust me — lots of aggravation. Noone liked wading through porn and SPAM.

Second, getting treated is not an option, it is a necessity. I realize that without insurance, your options are limited. But hyperthyroidism is potentially lethal without treatment. When it isn’t lethal, it can make us invalids. So, just as you put gas in your car, or replace fan belts, or replace batteries in the car, you MUST treat your hyperthyroidism. There are options that are less expensive than others; there are sometimes ways in which people can get treatment without insurance. Sometimes it just requires cutting off the TV cable or other cost-cutting measures — temporarily — to get the disease under control. I don’t mean to minimize the problems when there is no health insurance. But I DO mean to emphasize the problems that occur without treatment. They are HUGE. And, with treatment, we DO get well again. Without treatment however, we get worse.

Libido issues are common for those of us who are hyperthyroid. You are very, very ill when you are hyperthyroid. Would you expect to be sexually active if you had just been hit by a train? Of course not. Well, hyperthyroidism is like being hit by a metabolic train. Nothing in the body works the way it should. ALL resources are strained to the max. You need to get yourself healthy again to expect normal body functions, no matter what they are.

[Bobbi]

in reply to: Pediatric Graves – My 6 year old son #1061436

Kimberly may know more about the existence of support groups in your area. I just wanted to add one thing I thought about in reference to Ski’s comment about sunglasses. We can become light sensitive while hyper. If you detect your son having difficulty with bright lights — even indoors — that could be what is going on. Also, in adults anyway, thyroid disease causes the quality of our tears to change. We "cry" more easily, even though we are not necessarily crying. Our tears become quite watery, they do not stay on the eye as long as normal tears do. So the slightest thing can cause them to run down our cheeks. And, if this is going on, our eyes feel dry a lot of the time. If your son complains of "gritty" eyes, that is probably what is going on. Or if you see him rubbing them frequently. It is extremely important to keep the eyes well-lubricated, otherwise we can get scratches on the cornea. And corneal scratches, I learned from hard experience, do not heal well with dry eyes. There are products called artificial tears (a lot of different brands, in different consistencies) that we use to keep our eyes lubricated. Some of us have to use them more than once an hour. Again, I don’t know if this problem occurs with pediatric Graves eyes, but you might want to be alert to the symptoms just in case. These artificial tear products are easy to find. Just make sure they are not the "get the red out" type of eye drops. Nor are they drops for "allergic eyes." A pharmacist could help you if you get confused…..there are LOTS of eye drop products available.

[Bobbi]

in reply to: Thyroid hair question #1061502

Generally speaking, if the hair is coming out in clumps, it can be due to being hypO. Also, generally speaking, it isn’t so much thyroid hair as SICK hair. Our bodies deny nutrients and resources to the hair when we are ill. Ditto nails. So, when we are not in a healthy state, our hair (and nails) will show it. They are the first to lose nutrient support, and the last to get it back.

[Bobbi]

in reply to: Itching #1061516

I don’t know where the itching is, Cindy, but another thing I used to do with itching on my lower legs was to put on the moisturizer at night, AND wrap them with plastic wrap. You must NOT do this if you are using a cortisone cream for the itching. But if you are using only a moisturizer and the part of the body that’s driving you nuts is amenable to wrapping, the plastic wrap will help keep the moisture on the skin.

[Bobbi]

in reply to: Itching #1061513

We often experience itching while hyperthyroid, because of dry skin. Try putting a good, dense moisturizer on your skin while it is still damp after a shower or bath for the next few days. The moisturizer will hold the moisture against the skin and help to keep it from becoming too dry.

If that doesn’t work, then perhaps the itching could be due to a drug that you are taking. If that seems to be the case, then you need to talk with your doctor(s).

[Bobbi]

in reply to: Have decided on the RAI #1061522

The fact that you may have back issues as a result of an event in the past does not necessarily mean that you have bone loss problems now, but one thing that you can talk with your doctor about is getting a bone density scan of some type. That will evaluate your bone content with respect to the "average" of other people of your age and race. It’s not a bad idea to discuss this issue with your GP, or endo, if you are concerned about where in the process of losing bone you currently are.

I know the next 10 days may feel like a hundred, as you get more hyper, but know that we are here to support you through it. Good luck with your RAI. I do hope you are feeling much better, and soon.

[Bobbi]

in reply to: Graves and Extreme Workouts #1061533

Hi. I’m sorry you have come out of remission, but blaming yourself (the extreme workouts, etc.) ignores the fact that remission is, by definition, temporary. You were blessed with some years of normal health, which is really good. I hope that you are able to get those hormone levels under control again, so that you can continue to feel reasonably well, even though you are hyper again.

Take care,

[Bobbi]

in reply to: 3 meds in 4 weeks! Bad Endo in Va; I need a new one! #1061601

One other observation: according to my endo, getting blood tests too frequently leads to a hormonal roller coaster. She didn’t use those precise words, but that was the gist of things. If you test too soon, the TSH (in particular) has no chance to normalize to the new dose. You can therefore "think" that your dose hasn’t worked, and raise it, only to find a few weeks later that you are, indeed, hyperthyroid again. Obviously, if you’ve waited six months, the blood test info should be solid. But three weeks is much too short a time to know how things are going (again, according to my endo). Through over thirteen years of observation on this board, I have noticed that the folks who complain about never being able to get their levels right are testing their blood much sooner than my endo recommends ( wait six weeks minimum, three months optimal until you get consistent results then stretch it out). In fact, the one time my endo did not wait to change my dose (because she uses other types of observations for things like hypo/hyper, in addition to the blood tests) I did, briefly, do a roller coaster. From then on, I became a believer, and even though I might have felt lousy, I would wait the prescribed amount of time before going in to check the blood again.

[Bobbi]

in reply to: Virus and then Graves Disease #1061575

Just a note: Kimberly, when I was immensely hyper, I also had some (minor) head tremors along with the hand tremors. It was pre-diagnosis for Graves, and I was sent to a neurologist who diagnosed the same thing — essential tremors. They both went away with the successful treatment of the hyperthyroidism. That said, I know it is completely possible for someone to have essential tremors AND hyperthyroidism. But in cases like mine, the cause was Graves.

[Bobbi]

in reply to: question about medicine again #1061625

The medications do start to work immediately. The problem is that the thyroid makes more hormone, typically, than the body uses, and then stores it up for future needs. We don’t typically feel much better until those stored supplies are gone. But since you only had three weeks or so to build up the supplies of thyroid hormone (if any) you should feel better soon. If you are planning a July surgery, don’t borrow trouble here: you may be good to go by the time another month has passed. I hope so. I know it’s a difficult decision to make, and having made it, you don’t want anything messing it up.

Fingers crossed,

[Bobbi]

in reply to: Is it possible I’m in remission? #1061612

With hyperthyroidism, it is a huge mistake to tweak your meds on your own. If you do, your doctor may not be able to figure out what dose you need to be on (if any), with any reliability. And, tweaking things on your own, when your doctor finds out about it, could undermine your working relationship with the doctor over the long term. And we are in this for the long term.

When you have questions like you now have, the best thing to do is call the doctor’s office and tell the nurse, and ask what you should do. Especially about the rash.

As for the weight question, gaining weight might be due to your levels of thyroid; it might also be due to your workouts. Building up muscle adds to weight. But our doctors are singularly uninterested in our weight issues typically, so don’t expect a whole lot of response just based on weight alone. There are way too many factors that enter in on our weight ups and downs for them to automatically assume it’s your thyroid levels.

[Bobbi]

in reply to: question about medicine again #1061620

I am so sorry that you are feeling so awful again. I have no idea how long it might take before you feel more normal. I assume that it will be quick because your thyroid cells only had three weeks to make hormone like mad. That, however, is only a guess. But the main thing I’ve learned with this disease is to take things one day at a time, no matter where I am in the process. If things are rocky, I take better care of myself; if things are good, I try to focus on it, and really enjoy it.

[Bobbi]

in reply to: Graves and Heart Issues #1061667

Try not to think of it as "going backwards" – although I know that is hard. With an autoimmune disease fluctuating antibody levels occur ALL the time. Sometimes our antibody levels are really high, for no well-understood reason — and our symptoms get worse. Other times, these levels subside (again, for no well-understood reason) and our symptoms get better, or go away for a while (remission). There’s no rhyme or reason known at this point in time. With an autoimmune disease, you need to understand that the disease will come and go. Some folks get really lucky and the disease symptoms remit for years. Others don’t experience that. But fluctuation is what is expected, what is normal. Not anything unusual, and while it feels like going backwards, it really is only the nature of the disease.

[Bobbi]

in reply to: Help. RAI an option? I have thyroid eye disease too. #1061686

Hi, Hannah:

Weighing the pros and cons of various treatment options is never easy. Everything comes with potential side effects. Speaking generally, though, being hyperthyroid is the worst option we have; our treatment options are all safer than that. So keep that positive thought in mind as you are trying to decide what to do.

Some endos, with all of their experience with patients, may have seen enough problems with the antithyroid drugs like Tapazole, that they prefer to have their patients remove their thyroids and go on replacement hormone. Replacement hormone IS thyroid hormone: the "side effect" issues have to do with getting too much or too little, but replacement hormone doesn’t cause the type of side effects that can happen with the antithyroid drugs. So, these endos consider it safer. There was an endo at one of the conferences who talked about the horror of having a patient develop one of the major bad side effects of the drug (which happens VERY rarely). This particular endo truly wanted his patients to avoid long-term use of those drugs.

That said, there is a lot of literature that suggests that long term use of the drugs may be appropriate for patients who tolerate those drugs well. In Europe for example, it is a lot more common to see long-term use of drugs like TApazole. And some endos in this country are willing to continue prescribing them for patients, again provided they seem to be working well and that their patients are tolerating the drug.

Back to TED. TED has a very defined disease curve. We get it (develop the hot phase) and we experience a period of time with fluctuating eye symptoms — double visions, bulging, etc. Then things stop getting worse for a while, and start to get better (however slightly). Then we stabilize completely at some level (cold phase). For some of us there can be very little obvious impairment. Others of us need surgical intervention to repair our appearance. But once the cold phase hits, the disease is, typically, done. If you have active (hot) thyroid eye disease, it is possible that you will see a worsening of your eye conditions after RAI. It is also possible that you will not. The frustrating thing about medical research is that one study often contradicts a previous one, and then we don’t know which one to believe. Some studies have suggested that being hypo (having depressed levels of thyroid hormone) causes a worsening of the eye disease. Some studies have suggested that RAI can stimulate the immune system which then would cause a temporary worsening of the symptoms of the eye disease. Neither being hypo nor doing RAI CAUSES the eye disease. The symptoms just worsen. Now I can speak to the issue of being hypo and how it might appear that it causes the eye problems, when it doesn’t really. I have experienced TED, and gotten into the cold phase. I totally panicked one year because my double vision started to worsen, and I went to the opthamologist who calmly told me to get my thyroid levels checked. He said if I was hypo, that my eye muscles would be working harder to provide regular vision, and that if I got back to normal levels of hormone, things would improve. He was correct. I needed a slight tweak to my replacement hormone, which I got, and my eyesight went back to normal. So, being hypo wasn’t causing a return of the disease, it was simply interfering with the proper function of my body. We corrected that, and things went back to normal, overall, including the eyes.

If you have active eye disease, taking prednisone at the same time you do RAI has been shown to prevent any worsening, temporary or otherwise, of the eye condition. You could ask your pharmacist to tell you about possible side effects of prednisone, but a lot depends upon 1) the dose and 2) the length of time you would need to be on it — if you would need to be on it. (Remember if your eye disease has already gone cold, you might not need to take it.)

I know this is a long response, but you also asked about going hypo after RAI and the studies that suggest that the hypo condition can cause the eye disease, or worsen the eye disease. Some folks assume that removing the thyroid makes them hypothyroid for life. That is only true if they were not taking replacement hormone. "Being hypothyroid" is a technical term that refers to the level of thyroid hormone in the blood. If we are taking appropriate levels of replacement hormone (which is chemically identical to T4 -thyroxin) we are not hypothyroid, we are "euthroid." If we are taking too much replacement hormone, we will become hyperthyroid again.

[Author]

Posts