[Bobbi]

in reply to: Thyroid Eye Disease #1061967

Some folks erroneously feel that when we develop an autoimmune disease that we have a weakened, or compromised, immune system. That is not necessarily true. Our immune system has created an antibody to one of our own body tissues, by mistake (if you will). In the case of TED, that tissue is something in the eye muscles. In the case of the thyroid version of Graves, the antibody is to something in the thyroid cell. Anyway, any substance the boosts the immune system, that makes it work better, or harder, will also increase the antibody levels. And it is those antibodies that are causing our problem in the first place. That is why Ski said to be cautious about taking additional supplements that boost the immune system. We need to walk a line, and find a balance, between being healthy (which involves getting the proper nutrition and vitamin/mineral intake) and going an extra three miles taking immune-boosting substances. We don’t want a weakened immune system, we want a healthy one. So, if you are ill with a virus, or something that suggests your immune system is struggling, taking additional vitamins and minerals will help you regain health. If you are healthy (except for the eye problems, or thyroid levels) taking a whole bunch of additional vitamins and minerals and immune boosters might make those conditions worse.

[Bobbi]

in reply to: I chose RAI Treatment #1061702

Dental technicians and xray technicians cover us up with lead aprons, and leave the room before turning on the xray machine. These types of precautions have a lot in common with the ones we are given for a period of time after RAI. It isn’t that the particular dose of radiation in the xray is harmful all by itself. But radiation exposures are cumulative over a lifetime, and to avoid unnecessary exposures is a healthier behavior. The people around us, who are not suffering from diseased thyroids, don’t need the exposure. Also, (the lead apron), the smaller the being, the more harm doses of radiation "might" be. So we cannot do RAI if we are pregnant, and if we have small children, or pets, we need to avoid cuddling with them for a week or so. Our medical people prefer to err on the side of caution.

Online, you will find some folks spreading horror stories. Whether or not any of these are true can be difficult to determine. Obviously, any medical intervention has potential adverse side effects and SOME people have had less than optimal results. In our case, though, our treatment options, while not being perfect, tend to be rather safe. Your best guide is going to be your doctor(s).

[Bobbi]

in reply to: I chose RAI Treatment #1061700

No, Kimberly, I haven’t heard of any shortages of synthroid products. And, given the huge number of people that are on it, I don’t think the manufacturers have any shortage of customers. (Not just those of us with Graves, but also folks with Hashimotos, thyroid cancer patients, and the 10% or so of the population whose thyroids peter out as they age. A LOT of older people find themselves taking the levothyroxin (Synthroid) products.)

[Bobbi]

in reply to: I chose RAI Treatment #1061699

I know the heart palps and a-fib issues are quite scarey. I hope they get controlled soon, Dave.

[Bobbi]

in reply to: I chose RAI Treatment #1061696

As to the length of time one feels crumby following RAI — or any of the treatments. It is an individual journey. Five weeks after RAI I was feeling good. Not pre-disease normal, but much, much, much better. Other folks take longer. Moreover, it takes months AT normal levels of thyroid hormone (no matter how you get there) before your body heals enough from the damage that being hyperthyroid did, for us to "feel" normal again. It is a process, not an instantaneous thing. We see progress towards getting well, we don’t wake up, overnight, and feel like we did before we became ill. But we do get well again. And the better we work with the process, the quicker it will happen. This means taking proper care of ourselves, eating properly, and getting appropriate levels of exercise once the doctor clears us for exercise.

It is not recommended to hold small animals against our necks for at least a week after RAI. And, depending upon the dose someone is given, it might be a tad longer. It would be important to talk with your own prescribing nuclear medicine doctor (or technician) to get a recommendation based on your level of treatment, JeanMS.

[Bobbi]

in reply to: I chose RAI Treatment #1061691

I’ve heard good things in general about Cleveland Clinic — and experienced a non-thyroid related treatment at one myself that was very positive. Anyway, your doctors most likely have told you to expect to be MORE hyper soon than you’ve been for a while but in case they have not, you need to be forewarned. As the RAI destroys thyroid cells, they release their stored supplies of thyroid hormone all at once, and when they do our hyper symptoms increase a lot. For a few days, typically. This is not "storm" because the cells that are releasing their supplies are not making new hormone. The half-life of the most potent form of hormone, T3, is three-quarters of one day, so when T3 is released (it is about 20% of a thyroid cell’s production of hormone) it gives a huge boost that goes away relaltively quickly. T4, which has to be converted into T3 to be a nuisance, has a half-life of almost one week. So, what you need to expect is an increase in your hyper symptoms, and that most likely will show an increase in the palpitations you experience. I had been prepared for this experience (we call it "dumping" here on the board) by my endo, but some folks aren’t and it can be frightening if you don’t know what is going on.

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

[Bobbi]

in reply to: Need advice please! scary doc call :( #1061730

Hi, Erica:

We are very, very ill while we are hyperthyroid. But testing "all" the possible thyroid numbers doesn’t necessarily help. If your blood tests showed elevated levels of T3 and T4, and suppressed levels of TSH you ARE hyperthyroid and need to take the antithyroid med given you (PTU). It doesn’t matter what the antibody tests show because it doesn’t matter why you are hyperthyroid at this point, only that you are hyperthyroid. PTU (and methimazole) acts as a chemical barrier to the production of thyroid hormone. It blocks the ability of thyroid cells to take iodine and make thyroid hormone. The trick is to get just the right amount of it. Take too much, and you will become hypothyroid; take too little and you will remain hyperthyroid. So it is important to get the blood tests asked of you by your doctor at the proper times.

Unfortunately, it is probably not wise to drink alcohol while taking PTU. Alcohol and PTU have been shown to be hard on the liver — in other words either one can potentially damage your liver. Taken together, they add to the possibility.

Anxiety levels, and rapid heart rates, etc., typically go away when we regain normal levels of thyroid hormone over time, so extra drugs (which put an extra burden on the liver) are not always necessary to combat these issues.

I do hope you are feeling better soon.

[Bobbi]

in reply to: Total thyroidectomy #1061740

You will not "be" hypothyroid. Yes, if there were no replacement hormone to take, "being" severly hypothyroid would be as horrid as being hyperthyroid. But we are not hypo when we take replacement hormone. Replacement hormone IS thyroid hormone. It is chemically identical to thyroxine and it keeps us euthroid (i.e. at normal levels of hormone).

I do wish you good luck with the surgery.

[Bobbi]

in reply to: Worried about my test results… #1061747

Just a comment, Kelly and I think I’m reading things correctly, but as Kimberly pointed out we’re amateurs and cannot interpret test results. But it struck me that you made a mistake that I have made in the past, confusing the decimals and zeros in the TSH test. 0.09 (which you reported as your TSH number) is outside of the normal range, and low. It is, in other words, lower than 0.45 which is the bottom of your lab’s normal range. And that indicates that you are on too large a dose of replacement hormone. Think of TSH and thyroid hormones as being on opposite sides of a seesaw. When the TSH is on the ground, the thyroid hormones are high up; when the thyroid hormones are low, the TSH goes up. You said that the nurse practitioner reduced your meds, when you thought you needed to raise them. But this report looks like it showed the need to lower the meds, not raise them.

[Bobbi]

in reply to: Giving birth with treated Graves #1061773

Inasmuch as your thyroid has been removed, those anti-thyroid antibodies are not a problem for you. But there can be interaction — or perhaps the words would be "is interaction" — between your blood and the baby’s blood, in the womb. Your antithyroid antibodies thus can adversely affect the baby if they are present in high enough quantities. What this means is that sometimes, not always, and not even usually, women with Graves antibodies give birth to babies who are (temporarily) hyperthyroid. The babies are not producing their own antibodies, but are reacting to their mother’s antibodies. Thus, your baby needs to be monitored to make sure he/she is not hyperthyroid.

It seems your doctors are being careful, and looking out for your baby’s health.

Congratulations on this upcoming baby! I do hope all goes well.

[Bobbi]

in reply to: recovery time from surgery? #1061768

Can you hire a sitter? At least for a few hours a day? I didn’t have my thyroid surgically removed, but I have had a couple of surgeries. Without four children around. It took me at least a week to get some "oomph" back, and that had nothing to do with pain. Surgery is a stress — even when it goes well. And when we are stressed, our immune system lowers and we are more likely to become ill on top of whatever else is going on. This is a general rule of thumb. So, it seems to me it would be wise for you to plan more recovery time for yourself.

[Bobbi]

in reply to: Diagnosed-LOW TSH, normal T3 T4 & TPOAb- advice please #1061811

Regarding the low TSH, normal thyroid hormone levels: Think in terms of viewing a two year-old’s birthday party with a video camera vs. a single shot camera. TSH is the video; thyroid hormones are the single shot. When the test was taken, your thyroid hormones were normal. That could have been a photo of the children smiling over cake. But TSH is like a "running average" of thyroid hormone levels — it gives us sort of a view of your thyroid levels OVER TIME. So, a video, in addition to showing the child smiling over cake, also incorporates a few minutes before when one of the children was beaned by the birthday child and started crying and chaos ensued. It’s not a perfect analogy, but I think it helps us to understand why part of the test could be considered normal, but another part abnormal. Having a suppressed TSH suggests that over time your thyroid hormone levels were not normal, that they were in fact higher than they should have been. And that they likely were higher than they should have been for longer than they’ve been normal at the present.

[Bobbi]

in reply to: New Graves Diagnosis #1062125

We don’t necessarily "feel normal" when we first regain normal levels of thyroid hormone. It takes the body months AT normal levels to heal. You weren’t sick for three weeks, most likely, so it will take more than three weeks for you to feel your old self.

You do need to check your thyroid levels from time to time while on the ATDs like methimazole. Your doctor will indicate the time between checks, but if you start feeling markedly different you might want to call and get blood work sooner, rather than later. The ATDs can make us hypothyroid.

I do wish you good luck, and hope you are feeling more normal soon.

[Bobbi]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064887

My point was that it is not "just" the number that is important on the scale. I really think that is important. Yes, when the clothes stop fitting properly, and there’s extra around the middle, it’s not muscle weight. But I think some folks freak out about the number alone and should not. We have to think about what KIND of weight we’re gaining. And also, whether or not it’s [i:25e5qzs1][b:25e5qzs1]healthy[/b:25e5qzs1][/i:25e5qzs1] weight gain, even if it’s not all muscle. Anorexics need to gain both fat AND muscle. And many of us resemble anorexics after our bout with hyperthyroidism. I did. Everyone, including my husband (who really appreciates thin women) told me I was much, much too thin. Think swizzle stick thin. (Ha. Little did they know that they were pulling the finger from the plug on the cookie jar when they told me that!) Their commentary though helped me to keep a more rational view of weight gain when it started to come back. And the first 15 pounds WERE muscle, not fat.

[Bobbi]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064885

Well, keeping the log of food intake and exercise for one week is probably not a long enough sample for you to take to your doctor. It is possible that whatever is going on to drive the weight gain last week started BEFORE you started logging. So, I would recommend keeping the charts for at least a month before going to the doctor.

Second. It is possible to eat too few calories, as Kimberly stated, for health reasons. But worse, apparently if we take in too few calories, the body responds by LOWERING our metabolism. Yes, that’s right. Lowers the metabolism. To conserve as much energy as possible for future basic needs. Many diets nowadays allow for frequent, small "meals" or meals with deliberate snacks in between, to keep the metabolism high. I have actually seen someone (my son) drop weight like a stone while eating small amounts of controlled food every three hours all day long. And exercising, of course. Weight Watchers and orther succesful diet groups also counsel people to eat appropriately several times a day. So, there may be some truth to this dietary concept.

Third. In general, after we get treated for hyperthyroidism, we should not take the weight NUMBER on the scale and over-react. Actually, we should probably never look at just the number for our decision making. Why? The presence of muscle raises our metabolism. Muscle weighs more than other tissues. When we exercise, muscle mass increases and our weight will increase with the increase in muscle mass. But, since muscle burns more calories than other tissues, even when we’re not using it, we typically, over time will see a loss in weight as long as we control our portions and caloric intake. While we are hyperthyroid, we lose muscle, especially the large motor muscles of the arms and legs and chest. That is, by the way, a large reason for our weight loss while hyperthyroid. And it is really rotten weight to lose. After successful treatment for hyperthyroidism, the lost muscle starts to come back, slowly. That looks like weight gain, but it is GOOD weight to gain. We need to exercise it to make it back into strong muscle. When I was treated with RAI, I continued to lose weight for a while, and then the muscle weight started coming back. I regained 15 pounds of the lost weight without changing clothing size. This told me that I was regaining muscle, not flab, not unnecessary weight. That is why I mention that the NUMBER on the scale is only part of what we should be paying attention to. A friend of mine who was quite fat, was finally convinced by her doctor to start regularly exercising. Her doctor FORBID her to look at the scale for six weeks. Why? Because she was going to be gaining muscle weight, and the doctor did not want her looking at the NUMBER on the scales and quitting.

So weight issues are not straightforward. They are complicated by a bunch of different factors. We can, and frequently do, add complications with weight loss attempts that are unsustainable (i.e. too extreme). Erma Bombeck, who was a terrifically funny syndicated columnist long ago, once stated that she had tallied up the weight she had lost on diets in her life, and it came to 1000 pounds. But that, alas, her current weight was higher than when she started. She was making a point that resonates with all of us who have tried over the years to lose weight without permanent success.

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