[Bobbi]

in reply to: 23 and just diagnosed with Graves Disease #1075168

Hi, Hopeful:

I was on PTU when I was first diagnosed (12 years ago). I learned then that the "life span" of PTU was rather short, and that it is really important to take it as directed. For example, Tapazole can be taken once a day. PTU, however, must be taken three times a day (as a general rule) unless you are directed otherwise by your doctor. That is because it will wear off, and you will experience the hyper symptoms again. So, to keep the thyroid levels under control, you need to take the PTU consistently AND frequently.

If you should have an adverse reaction to the PTU, there are two other options for you to consider to get this disease under control. They both involve removing enough of your thyroid that you are no longer hyperthyroid. One method involves surgery to remove the thyroid, and the other involves removing the thyroid with a dose of radioactive iodine. Then, you would take replacement hormone. Replacement hormone is chemically identical to your body’s own thyroxine (T4), so there are no adverse reactions to the active chemical. Some folks have trouble with some of the inert ingredients that make the chemical into a pill, but there are replacement hormone pills made without the offending chemicals (usually dyes used to distinguish one dose from another).

The issue is that you MUST do something. Being hyperthyroid is devastating to our long-term health. It is really important to get things under control.

I do hope you are feeling better soon.
Bobbi — Online Facilitator

[Bobbi]

in reply to: New to this #1075197

Hi, Diane94,

I can only imagine how overwhelming everything is for you right now. Even just dealing with hyperthyroidism all by itself can be enough to swamp us.

It is monumentally important that you get the hyperthyroidism treated asap — by whatever method you and your doctors agree upon. That is the absolute first priority. The other problems might still be there, but the treatment can address your condition of bad — and continuously deteriorating – health. None of the treatments work overnight to make us feel well again, but your body cannot even begin to heal until your thyroid levels are stabilized in the "normal" zone.

Weight issues may seem important, too, but they will take care of themselves over time. We typically lose weight when hyperthyroid, due to the fact that excessive levels of thyroid hormone cause us to lose muscle throughout the body. This is especially true of the large motor muscles of the arms, legs and also chest muscle. But heart is muscle too, and the muscle loss can affect the heart as well. Obviously, with less muscle, we are weaker, and have less energy and stamina. The presence of muscle, however, raises metabolism, allowing us to eat more. Some folks do gain weight while hyperthyroid. Precisely why is not completely known. Once we regain normal levels of thyroid hormone, the lost muscle tends to slowly come back. This can appear to some as weight gain because muscle weighs more than other body tissues. It is, however, good weight gain, because it raises our metabolism back to normal.

I was absolutely convinced that would gain weight after RAI — I had only lost five to eight pounds while other people had reported much larger weight loss, etc. — so I ate very wisely after RAI. I ate good food, nutritionally; I allowed myself small snacks of fruit or nuts, or cheese and crackers, midway through morning or afternoon, but I ruthlessly eliminated empty calories of desserts and sweets. And I lost 18 more pounds. I regained 10 or 12 of them as the muscle slowly came back. And, unfortunately, I regained more when I went back to eating empty calories. So, I can offer you some encouragement about how effective a reasonable diet can be at regulating unwanted weight gain.

But as I said, weight gain or no, your health has to be the primary goal here. Being hyperthyroid is a grave threat to your long-term health.

Bobbi – Online Facilitator

[Bobbi]

in reply to: New Graves & Hashimotos and other stuff #1075247

A comment on being allergic to the replacement hormone: all of the replacement hormones have exactly the same active ingredient (levothyroxin); they vary in the inert ingredients used to turn the chemical into pill form. Allergic issues arise due to these inert ingredients: the active chemical is identical to the body’s own thyroxin. Usually, allergies are due to the dyes/food coloring material, put into these inert ingredients. Some manufacturers DO make a replacement pill that contains no dyes. So, if it is determined that there is a problem with the current brand you are trying, you could ask your doctor abour prescribing one without those dyes.

I know it seems to take frustratingly long to get oriented to the replacement, but hang in there. We do indeed get well again, over time.

Happy Thanksgiving.
Bobbi — Online Facilitator

[Bobbi]

in reply to: What the Graves????? #1075292

Hi, RNwithGD, and welcome to our board:

I began getting a good night’s sleep about the time I went hypothyroid. That took about a month, perhaps a month and a half. We are all different on that score. But, since I love to sleep, I think I tolerated the (short) hypo phase much better than others who have posted to this board. ” title=”Smile” /> Being able to sleep the whole night through was a distinct luxury, after all the time I spent hyperthyroid.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: graves/RAI/pregnancy #1075327

I cannot give you the definitive answer you are looking for, but I can explain a bit about what is going on with the different recommendations you have been given about how long to wait after RAI before getting pregnant.

There are two basic issues, that work together to make waiting prudent. The first, of course, has to do with any radiation exposure to the ovaries. Waiting through six to twelve months of menstrual cycles uses up eggs that were "mature" or close to mature at the time of the treatment. It is a precaution, because there is a possibility that as RAI is eliminated from the body via the kidneys and bladder, some radiation could affect the more mature eggs. It is not thought to affect those eggs which are not ready to be released. As to why there is no agreement among professionals? Your guess is as good as mine. If there were detailed clinical studies available, I would assume there would be a fair level of consistency between the advice given. This is not, however, something that has been studied with control groups, double-blind, etc., so I think the estimates we patients are given when we ask the question is the doctor’s best guess.

But, second, and also very important is the issue of your health. It can take a good six months at the very least for us to get regulated on thyroid replacement hormone, and many of us take longer. Our bodies begin to heal once we are on a dose of replacement hormone that is reasonably close to what we need . Prenancy puts strains on the body, so it is preferable that we be in good health when we become pregnant. OUt-of-whack thryoid levels can cause problems during a pregnancy, so being stabilized is a huge help. You might regulate onto replacement hormone faster than someone else — or slower. It is wise for you to wait until you’ve got reasonably good health back, and stable thyroid hormone levels, and that means probably a good 9 months if not a tad longer. You being healthy going into the pregnancy is going to be a huge help to both you and to your baby.

Bobbi – NGDF Online FAcilitator

[Bobbi]

in reply to: Remission? #1075623

One point for future reference: when I was going through the process ten years ago, remission was defined as being able to go off the medication and sustain normal levels of thyroid hormone for one year. Now, obviously, this is an arbitrary definition, but the point is that the antithyroid drugs do have the potential to make us hypothyroid and simply regaining normal levels of hormone, or even going hypothyroid temporarily,while on the medications does not mean that there has been a remission.

The same balancing act has to go on with the antithyroid meds that many of us have later with the replacement hormone: we have to find the "right" dose — the Goldilocks dose. While you still have a complete, and diseased, thyroid that balancing act can be even more difficult. Antibody levels rise and fall for no well-understood reason, so adjustments are often required more frequently than one would like.

I do wish you well. Some folks do indeed get remissions that last a few years, and since that is your wish, I hope you succeed.
Bobbi — Online Facilitator

[Bobbi]

in reply to: being ill #1075321

Hi, Jeannette:

If you have been recently diagnosed, and are in the process of early treatment, you might be more susceptible to infections etc., simply because hyperthyroidism has run your body down. If, however, you have been stabilized on a treatment for a while, your body has had a chance to start healing, and you should not expect to be sick frequently. Our immune systems are not "compromised" by the Graves antibodies. But we can be weakened by hyperthyroidism. That’s the difference.

I hope you are feeling better soon,
Bobbi — Online Facilitator

[Bobbi]

in reply to: graves/RAI/pregnancy #1075323

Hi, Janet:

I cannot answer all of your questions, but I can give you some facts to digest to help your daughter make her decisions (or you, if your daughter is a minor).

Your daughter’s thyroid is permanently diseased. While it is possible for remissions to occur (in 20-30% of patients who go on ATDs), these are, by definition, temporary and of predictable duration.

Whether or not there is a flare-up during a pregnancy is not predictable. Pregnancy is one of the times when it is more common for Graves to appear, so it is always possible for a woman who already has Graves to experience a flare-up. If there IS a flare-up during a pregnancy , both your daughter and the baby are put at increased risk. It might be a slight risk, or it might be a greater risk — no one can tell you in advance. Women have had successful pregnancies while on PTU, but whether or not it is safe for the baby depends upon the dose the woman needs to keep her thyroid levels in check. PTU does cross the placental barrier. And it exists in breast milk is small quantities as well. THe levels might be tolerable for the child, or they might not.

Assessing the potential level of risk to mother and child needs to be done by your daughters’ doctors, and perhaps a pediatrician. No one online can give you those "best guesses."

I wish you and your daughter good health,
Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: My son has Graves and we have questions #1075340

To Grace:

I wrote a message this morning in response to Vicky’s "Old to Graves but still Struggling" message. In it, I detailed some of the issues about taking replacment hormone. You might find it helpful.

Good luck.
Bobbi — Online Facilitator

[Bobbi]

in reply to: old to graves and still struggling #1075331

Hi, Vicky:

My first suggestion is that you keep a log. Write down, every day, when you take your pill, what you eat close to the time that you are taking the pill; any supplements/other medications that you are taking, and when you take them; make a note of when your period starts; jot down symptoms. This log will give you something concrete to show your doctor.

If you don’t want to wait, necessarily, for a log to suggest something: It is slightly possible that something you are doing is having an impact on the amount of replacement hormone that gets absorbed into your body. So, you must be careful to take your replacement hormone first thing in the morning, every morning, and wait an hour before having breakfast. I usually drink a cup of coffee while I am waiting, but I do this absolutely every day, so my replacement dose would reflect it. The issue is that some vitamins and minerals are known to interfere with the absorption of thyroid hormone from the digestive track into the blood. So, if you consume a food with these substances in them, it is theoretically possible that less of the replacement dose would make it into your body. Once the dose is absorbed, there are no problems with ingesting these nutritional elements. For similar reasons, it is recommended that we do not take any other medications, either, at the same time as our replacement hormone. One of my friends was having a terrible time with replacement issues. She was on a huge dose (200 mmc) of synthroid, as well as a sizable dose of T3 medication, and she was getting heart problems as a result. But her TSH was still wrong a lot of the time. She switched endos, and he immediately noticed that she was taking a handful of medications at the same time she was taking her synthroid. He lowered the dose of synthroid, removed the T3, and had her take those other medications an hour or so later. And this put things right again. She commented to me, "Nobody ever told me I had to be careful what I ate or took with my synthroid." So, in short, take only your replacement dose, every morning on an empty stomach and wait an hour before eating. Take any multivitamin (or other vitamins), calcium supplements etc. at least four hours after the replacement hormone (a recommendation made by my pharmacist).

Some people have noticed that they become "symptomatic" during certain specific dates of their menstrual cycles. You log will help you figure out if that is what is occurring. If that is what is happening, your doctor may be better able to figure out how to keep you stable.

I hope some of these suggestions help. And one other: make sure your blood tests are reasonably spaced apart. Some people get onto a hormonal yo-yo by getting their blood tested too soon between dose changes. It takes weeks — literally — for the TSH to reflect, accurately, dose changes. The TSH is like a moving average, so it is very slow to reflect a new reality. I experienced this problem very early in my replacement regime: the endo decided that I was looking too hypo, tested my levels, and decided to raise my dose. She commented at the time, that she usually did not do this, but…. And, sure enough a few weeks later, I went in with symptoms and was hyperthyroid again. From there on in, I made myself wait at least six weeks (her recommendation – six weeks to three months) before going in for another blood test. It was hard to do sometimes — if I was symptomatic I absolutely did not want to wait through six weeks of symptoms — but I had learned that having waited, my blood test results were more accurate.

Good luck,
Bobbi — Online Facilitator
Bobbi – Online Facilitator

[Bobbi]

in reply to: Is this a cure? #1075353

Your thyroidectomy cured your hyperthyroidism — or should have. That was what was making you ill. If sufficient thyroid tissue was removed, you should not have to worry any longer about the antibodies causing an overproduction of thyroid hormone to make you ill again.

But, it is true, that the treatments do not eliminate the antibodies. As a result, some folks argue that none of the treatments "cures" Graves. I consider that a quibble. What was making you ill is gone. That sure sounds like a "cure" to me.

Could you develop thyroid eye disease at some point? Yes, but it is not necessarily "likely". The eye disease is a separate autoimmune issue — at least it is now thought to be separate. It has also been shown to occur in patients who have never ever been hyperthyroid (i.e. with Graves), but have had some other thyroid malfunction. I don’t know if any studies have been done looking at thyroid removal and later development of the eye disease.

I hope this helps. And, I hope you are feeling better soon.
Bobbi — Online Facilitator

[Bobbi]

in reply to: scared #1075404

Let me explain a bit about RAI. The only place in the body that uses iodine is the thyroid. Any RAI that does not get taken into the thyroid, is almost immediately eliminated from the body, primarily via the urine, but also via saliva and sweat during the first 36 hours after the treatment. The RAI (I-131) that remains in the thyroid is essentially there for a bit over one month. The half-life of I-131 is 8.1 days, which means that after 8.1 days half of it has decayed away (evaporated, essentially). Scientists believe that any radioactive substance is essentially "gone" after five half-lives, so 5 times 8.1 is 40.5 days.

Long-term studies of RAI have demonstrated that it is fairly safe, with few side effects and no statistically significant increases in later-in-life cancers. It has also been demonstrated that patients who have done RAI have later gone on to have healthy children.

That said, if it were my child, I, too, would be concerned about it. I was concerned about it when it was me getting the treatment, and I was 52 at the time! Getting a second opinion might help. I know that many children are placed on antithyroid meds, but there may be some very good medical reason why your child’s doctor has suggested the RAI instead. You need to be sure you understand why the recommendation has been given. And getting a second opinion might be helpful, as well — although sometimes second opinions require a third to break the tie. ” title=”Smile” />

Absolutely the most important thing is to get your child treated. Hyperthyroidism is horrid on the body, and there can be some severe consequences of under-treatment or non-treatment.

I wish you good luck with your decision, and hope your child is feeling much better soon.
Bobbi — Online Facilitator

[Bobbi]

in reply to: Monitoring TSH after RAI #1075426

A word of caution, Cathycnm:

I agree with Ski about six months being a tad too long to wait for another blood check. But you do need to know that having your blood tested too frequently can also lead to problems. TSH is a bit like a "moving average" of our actual thyroid hormone levels, so it does take time for it to accurately reflect the real average. People who go in frequently, often find themselves on a hormonal yo-yo. My endo recommends waiting six weeks to three months between blood tests, until things level out. Six weeks is minimum if you are feeling "off." If you are feeling fine, three months. (And, interestingly enough, I have often felt "fine" only to discover that things were somewhat "off." How you feel is not directly related to your thyroid levels, once you get them stabilized.)

Good luck,
Bobbi – Online Facilitator

[Bobbi]

in reply to: I need some help making up my mind. #1075417

Hi, Mike:

I had RAI 10 years ago. I had tried antithyroid medications, and they made me feel like my brain was swimming through molasses. So, I opted for RAI. It took a while to get on the right dose of replacement hormone, but during that time, I never felt as badly as I had while hyperthyroid OR on PTU.

I have many friends who have had RAI and are on replacement hormone. Some are on it because of thyroid cancer. Others of us are on it due to Graves. We are all healthy. The replacement hormone acts exactly like the body’s own T4. It is converted in the body to the form needed by the cells as the cells need it. So, in a way, it is a bit like a "timed-release" capsule.

In forums like ours, it tends to be the sick folks who post the most. Or the folks who are having difficulties. Once people get well, they stop coming routinely to sites like this. So, you tend to see the "sick" side of things, the "complications" side of things, rather than the healthy side of things. One of the best things about this board, however, is that there are a few of us, who are healthy, who have volunteered to answer questions and give reassurance. The sick posters outnumber us HERE, but not out in the real world.

I wish you luck with your decision.
Bobbi — Online Facilitator

[Bobbi]

in reply to: Blood Tests – new to this site #1075411

First off — we cannot interpret blood test results. Actually, you should not rely on anyone online (unless you are emailing your doctor) to interpret blood test results. Each lab has its own set of procedures to run the tests, and those procedures may give different numbers than other labs. In the U.S. the labs put "in range" or "out-of-range" (often with "high" and "low") next to the numbers on their reports. I assume it’s the same in the U.K. but it might not be. We need our doctors, however, to interpret what those numbers mean for our health issues.

RAI has been used a lot in the U.S. to treat hyperthyroidism. I has been shown to be fairly safe — i.e. not leading to the development of cancers further on in life. One swallows a pill, or a bit of chalky liquid, and that’s it. The radioactive material is taken into the thyroid, and only the thyroid. Any that misses being taken into the thyroid is eliminated from the body, primarily in urine, but also in sweat and saliva, during the first three days. The only side effects at this point are the potential for a sore throat for a few days, and an elevation in the amount of thyroid hormone in the body about one week after we swallow the pill. The major drawback for RAI is that it takes time to work to it’s maximum — weeks, and sometimes months. And, if you have major eye disease along with it, RAI can occasionally (about 16% of the time) temporarily worsen your eye symptoms. There are ways around that (taking steroids), but it is an additional slightl risk.

Surgery acts rather immediately to lower thyroid hormone levels. In the hands of a well-qualified surgeon the risks are minimized, but there are risks of infection, damage to the parathyroid gland, and damage to the vocal cords.

As to which one you choose, you really need to discuss things with your doctor, who knows your specific health condition and issues. I know it isn’t an easy decision, but it is essential that your main source of advice be your own doctor.

Good luck,
Bobbi — Online Facilitator

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