[Bobbi]

in reply to: Finally getting RAI – info please? #1067660

I am away from my library that includes medical test info, so I cannot address what each of those tests involves. Many of them are part of a complete thyroid panel — to look at your overall thyroid production. We do not typically get the complete thyroid panel very frequently once the diagnosis phase is over. It might be repeated occasionally, when the doctor has questions about what is happening and needs concrete information. The CBC, liver and renal function are sometimes looked at in patients on ATDs because the drug has the capability of causing problems with white cell count, and liver function. It is possible that others of the tests are to look at your antibody profile (TPO etc). If so, you doctor may be looking for antibodies that might be affecting your thyroid function. Some individuals have antibodies for both Graves and Hashimotos thyroiditis (which causes hypothyroidism). The best person to ask about the panel of tests requested, though is your doctor.

Your daughter is at a "slightly" greater risk of developing thyroid disease given you history. But the odds are still in her favor of not developing a problem. You, and then she, should just be sure to have thyroid tests routinely done through the years to make sure.

As to how long you would need to be away from her after RAI, your physician or the tech who gives you the treatment would tell you. It often has to do with the amount of RAI given to you, and the age of your child, etc. Typically, we are told to keep a distance from small children and small animals — not hold them up against our neck region, etc. for a week. But you should follow the instructions of your own doctor.

I hope you are feeling better soon.

[Bobbi]

in reply to: Thyroid Storm #1067656

In thyroid storm, the thyroid cells go berzerk and start pouring out immense quantities of thyroid hormone. And they are making new hormone as well. The heart rate skyrockets, and the patient is extremely ill. It is a medical emergency situation that occurs in hyperthyroid patients who are not being treated, or whose treatment is insufficient. I have heard of it most often in people who have yet to be diagnosed with hyperthyroidism.

[Bobbi]

in reply to: Abbreviations… #1067654

RAI stands for RadioActive Iodine (I131). It designates one of the treatments for Graves. Since iodine is only used in the human body in the thyroid gland, taking a measured dose of I131 is taken up by thyroid cells, and only thyroid cells, and then procedes to destroy them. It is a way of removing thyroid cells and eliminating hyperthyroidism.

ATD stands for Anti Thyroid Drug. There are two basic drugs in the US — PTU (which is a shorthand form for propylthiouricil) and Tapazole (whose generic name is methimazole). In European countries the latter goes by the name carbamazole.
These drugs act as a chemical barrier to the production of thyroid hormone. If the drug is taken in the proper amount, they can interfere with just enough production of thyroid hormone to keep us in the normal zone.

TSH — Thyroid Stimulating Hormone. This hormone is produced by the pituitary gland, which acts as a regulator for thyroid hormone production. When the pituitary senses too much thyroid hormone it lowers the production of TSH. When it detects too little, it increases its production of TSH. By looking at TSH levels our doctors are given guidance as to how effective the treatments are working.

T4 — thyroxine. A form of thyroid hormone
T3 – triiodithyronin (sp??) — another, and more potent form of thyroid hormone. T4 is converted into T3 in various places in the body (especially the liver). Cells in all parts of the body use T3 as a catalyst for their metabolic activities.

There may be some others I haven’t thought of here. If so, just ask. I hope this helps.

[Bobbi]

in reply to: 7 Months Post RAI #1067726

I had a bit of the same issue for a while after RAI. My dose of replacement kept having to be lowered, and I eventually was taken off replacement completely for about two months, and then gradually it was necessary to add it back in. I, too, thought I was looking at surgery or another RAI. I do understand that this problem can be frustrating. Try to keep in mind that the disease is due to antibody production, and that the treatments (none of them) actually address antibodies. So there can be an antibody surge which affects whatever lingering thyroid cells there might be, and that can, temporarily, affect the level of replacement you need. I don’t understand all the ins and outs, but what counts for me is that the "fix" for me is much easier while on replacement than it was while I still had the full thyroid roaring in the background. And none of the hyper episodes seemed to sabotage my return to full health.

Wishing you good health,

[Bobbi]

in reply to: neck pain post RAI – how long til it goes away? #1067732

I know that a lot of folks complain about hypo — you might not be one of them. I’m not. I never got severely hypo, but even at a TSH of over 12 one time, I didn’t even know I was hypo!! I was sleeping (luxury after hyperness) and while I felt a bit of fatigue, it was fatigue that went away with gentle exercise. With hyper, if I tried to exercise it made me more tired; with hypo it wasn’t like that. My experience, for what it’s worth. We are all different. (Oh, yes, and there were times when I was sure I was hypo, and I wasn’t. Perhaps going hypo without symptoms has made me more understanding of why endos don’t take us seriously when we "feel" hypo but are not. My experience has shown me that I cannot tell what my levels are by how I feel — I need bloodwork to show it.)

[Bobbi]

in reply to: neck pain post RAI – how long til it goes away? #1067730

First off — the neighbor is simply uninformed. It’s too bad that happened, but it isn’t something you need to fret about. And you were not required to help educate him either.

Second — I’m glad you got a week of rest. We so often don’t take the time to pamper ourselves. I know that wasn’t your reason for taking the week off, but…

The neck pain — Mine didn’t last terribly long. It’s not easy to say how long it will last, because we are all different. It’s a sign that the RAI is working, so if you can view it as "progress" perhaps it won’t bother you quite as much.

As to going hypo around Christmas — Do you have an appointment with the doctor for blood work yet? My endo gave me an appointment five weeks out from my RAI to check the progress of things. If you don’t have an appointment, you might call the office and get one now. The timing may be different for you if your doctor has already recommended something else, but the important thing is not to wait until you necessarily "feel" hypo. There has to be some lag between RAI and that bloodwork, so that the pituitary has a chance to "catch up" with the lowering thyroid levels. But catching things as early as possible can be a huge help.

Good luck,

[Bobbi]

in reply to: ANGRY but finally started therapy yesterday #1067739

Well, you certainly have been through the wringer. I do understand what it is like to feel so horrid and not be getting the proper medical attention, but in my case you could have reversed the doctors. Once I got to my endo, I was in terrific hands, but the GP fooled around the diagnosis for many long months.

Anyway, one of the things you should expect, once the thyroid levels are normal, is for the anxiety attacks to go away. I suffered for many years from panic attacks, and have not seen another one since getting proper thyroid treatment.

You may, while you are going through the process from hyper to hypo and then waiting for your body to heal, find that you are still distracted/distractable and irritable. Memory issues can plague us for a while — make lists. It takes a while for all of the body systems to heal. None of it happens soon enough for us, but if you watch for progress, you will feel more encouraged than if you look for absolute "normal."

I wish you good luck, and I hope you are feeling much, much better soon.

Bobbi

[Bobbi]

in reply to: Questions – Grave’s Eye Disease and Rash #1067744

There are some over-the-counter products that are sometimes used to alleviate itching. Calamine Lotion/Caladryl is one of them. There are topical steroid creams as well. But it might be worth a try if you can find a small size. Also, Aveda (I think it is) has bath soaks containing oatmeal that are designed to moisturize skin and thereby help with itching.

The eye disease runs its own course in its own time, unfortunately. There are no necessary predictors available. (Smoking is thought to make it worse. ) Typically the ‘hot phase’ of the eye disease (the phase in which symptoms appear and grow) lasts anywhere from 18 months to 3 years. But it is thought by many doctors/researchers that all of us have "some" eye involvement when we have Graves. The percentage of folks who develop truly horrid eye disease is small. I realize that isn’t a comfort right now. When I began exhibiting symptoms of the eye disease I was panicked even though I knew then what I just told you. Waiting and watching was something that put me sorely to the test.

Right now it sounds like you have only the soft tissue swelling aspects of things. You can help with those symptoms by elevating the head of your bed (by putting books/bricks/boards under the head of the bed — don’t just elevate your head with pillows, which throws off the spine). Also, sometimes cold compresses will alleviate the swelling. We suggest keeping a couple of small ziplock bags full of frozen peas in the freezer, and using them as your cold compress. By putting the peas in the baggies, you avoid inadvertantly eating them after they’ve thawed and frozen several times. But peas are a good size for fitting around the contours of your eyes, reaching everywhere needed.

I also went to the cosmetics counter of a local department store and asked for "industrial strength" make up to hide the swelling. I think now I might have been better off going to a theatrical makeup supply company, but……

These are just "coping" ideas obviously. But they can help to make life a bit easier with the disease.

I wish you well,

[Bobbi]

in reply to: New Labs..Any opinions? #1067746

We don’t interpret lab results here — it’s really complicated and we’re patients, rather than doctors. That said, one thing I learned about labs after my RAI was that there was a lag between the RAI and the type of results I was hoping for. I think part of it is due to the fact that TSH is a bit like a "moving average." And like any other moving average, it takes time for the average to change to accurately reflect a reality.

While hyperthyroid, our menstrual flow is reduced, typically.

I know this answer isn’t what you were looking for, but I think your best option is to make a list of questions for your next doctor appointment. But if you are having intense hyper symptoms, you might want to call the office to find out if there is anything that could be prescribed, temporarily, to make you more comfortable. Sometimes our doctors prescribe beta blockers during this time; and sometimes our doctors put us back on the antithyroid meds, temporarily, to provide a bit of respite from the hyperness.

I hope you are feeling better soon.

[Bobbi]

in reply to: no shining lights, only sharp pains #1067751

You’ve gotten some really good comments back, lalaleyownee. It might help you to understand some of what is going on if I explain some of the effects of too much thyroid hormone. Thyroid is used just about everywhere in your body, so when the levels are out-of-whack absolutely no part of your body is working properly. The biggest problem with excess levels of thyroid hormone is its impact on the muscles and the heart. We actually lose muscle, especially the long muscles in the legs and arms. This muscle comes back when we are at controlled normal levels of hormone. From your post, you aren’t there yet. So, you are experiencing some muscle loss. Not only that, one of the things I noticed was that the ability of muscle to rebound after constricting (for physical activity) seemed to be impaired — i.e. it took longer for my muscles to be able to do repetitive activity. You can put your musculature under severe stress if you demand too much of it while hyperthyroid. And, sadly, the heart is muscle. It is already being asked (by the excess levels of thyroid hormone) to pump too fast. There is a more dangerous problem in that excess hormone messes up the rhythm of the heart beat occasionally.

So, all in all, the reason that your doctor told you to take it easy is because it is truly dangerous to demand high levels of exercise of yourself until you are controlled at normal levels of hormone.

It might help you to keep in mind that all of this is temporary. The treatments do work to give us back our health, stamina and ability to exercise. Waiting a few months when you have goals like yours can be tremendously frustrating, I know. But there are Olympic athletes who have developed Graves, and gone back to competition in the next Olympics. The debilitation is temporary.

You need to trust your doctor’s advice, and really listen to your body. Part of what goes in to making a competitive athlete is the ability to use will to override the body’s sense of fatigue, and to work through pain. That is an advantage for you most of the time. But right now, it is making things harder for your body, not better.

I do wish you normal levels of hormone soon, and a return to health and competition.

[Bobbi]

in reply to: Recently Diagnosed with Graves #1067776

One thing to keep in mind when you are reading our board, or others out there, koop. Most people who post to these boards are ill. Once folks regain their health (via whichever treatment option) they typically get back to the business of their lives and do not dwell on these boards day in and day out. If you go back through the archived posts from this bulletin board, you will see that the names change every three to six months; the stories remain exactly the same. So what you are seeing is not the whole picture.

This board is a little different inasmuch as we have a few moderators who have continued to try to help folks with information, even though we are no longer ill. We try to give things a little balance.

So, take heart: you can expect the treatments to return you to health.

Wishing you a good day,

[Bobbi]

in reply to: So tired of this… :( #1067770

Please talk with your doctor seriously about how you feel. As mentioned, you might be suffering from a post partum depression: people need help to get through that. There’s nothing wrong with getting that help.

In addition, out-of-whack thyroid hormone can make us depressed, too. It is imperative that you take the meds at the time indicated. There are a two different medications possible, and sometimes one works better for someone than the other one does. Again. Talk seriously with your doctor.

Sending hugs,

[Bobbi]

in reply to: Just told I need to get RAI, concerned about weight #1067757

Endos typically will not adjust thyroid hormone levels to try to help someone lose weight. The dangers of having too much thyroid hormone — even little bits too much — are significant: bone loss; muscle loss; potential for thyroid storm; etc. And, quite frankly, anyone who tries to lose weight that way — by taking extra doses of thyroid — is playing a metabolic form of Russian Roulette.

As you have noticed, it is possible to gain weight even while on the ATDs. Your major concern cannot be weight gain. That obviously is a concern to us, but it shouldn’t be the major one. Your major concern must be "Is the treatment controlling thyroid hormone levels in the ‘normal’ zone?" The treatment option is not the problem — weight gain could happen with meds, RAI or surgery. One of the reasons we often (but not always) lose weight while hyperthyroid is due to muscle loss. We lose, gradually, muscle — especially the large motor muscles in the legs, arms and chest. Muscle weighs more than other body tissues, but it also uses more calories. So, depending upon how much muscle is lost, there can be significant changes to how much we can eat without gaining weight. (This may be why some folks gain weight while hyperthyroid.) When we regain normal levels of hormone, the muscle gradually starts to come back. But, according to one of the endos that spoke at a conference a few years ago, it is "mushy" muscle (her words), and needs to be exercised, toned, for it to be strong again. This returning muscle appears on scales as weight gain. But it is good weight to gain because it allows us a higher calorie intake. I mention all of this because just looking at the scale is not the way to evaluate what is going on.

Anecdotally, I lost an additional 20 pounds after RAI. I ate nutrionally dense foods, I planned snacks for in between meals, and I ruthlessly eliminated all "empty" calories. That doesn’t work for everyone, apparently, but it did for me. I DID regain those twenty pounds eventually, over time, but most of the weight gained was muscle (I didn’t change clothing size), so it didn’t matter to me.

Make your treatment decisions based on what controls your thyroid hormone levels well. If the ATDs are in fact controlling your thyroid levels, and you are not experiencing side effects, there are endos around that let their patients stay on them for years. If, however, your levels fluxuate a lot, requiring dose changes, you might be better off choosing one of the "permanent" options: removing the thyroid (via RAI or surgery) and then taking replacement hormone. If enough of the thyroid is removed, typically we do not go through regular fluxuations from hyper to hypo and back.

[Bobbi]

in reply to: Methimazole: trying to get to maintenance dose … #1067782

Your labs may lag a bit after changing the dose of methimazole. Especially the TSH level is a "running average" which means it is somewhat slow to show changes in thyroid levels. But elevated heart rate, etc., could start more quickly. A pharmacist might be able to give y ou an idea of how long the drug is biologically active in the body. For PTU (which is the ATD I was on) it was a question of hours. Methimazole has a longer span, I believe. But your pharmacist may be able to tell you for sure. If you have heart rate symptoms you should tell your endo.

[Bobbi]

in reply to: Still experiencing symptoms…but labs are normal? #1067786

You might try keeping a symptom log — like a diary, if you will, noting when you experience the "bad" days, or hyper-like symptoms. Doctors are trained scientifically, which is both the good and the bad news. It is good because they tend to be somewhat objective; it is bad because symptoms that are not "measurable" (i.e. heart rate is definitely measurable) don’t have the impact on them that they should. It might help you to home in on what else is going on in your life that might be affecting the symptoms. One woman on this board, long ago, kept a symptom log and discovered that her bad days were definitely associated with her menstrual cycle. THAT was concrete enough for her doctor to pay attention.

Second: a typical situation for all of us is to go to the doctor with symptoms that we think are thyroid related, and have the doctor tell us precisely what your doctor told you. It isn’t helpful. We don’t feel well, we want it fixed. What I said to my own endo when this situation came up was, "OK. I was hoping it would be thyroid, because that is easy to fix at this point . But if it isn’t thyroid, what IS it???" When the doctor says "It’s not your thyroid," his/her thinking stops. And the problem is that you don’t feel well, and you would like to have it fixed, so you need to keep the doctor thinking about what IS going on.

Wishing you better days, soon.

[Author]

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