[Bobbi]

in reply to: One month till RAI #1063171

Ok. One recommendation is that you be sure to drink adequate amounts of water. RAI is very water soluble, so any that does not get captured in a thyroid cell will soon be eliminated from the body via urine, sweat, saliva. That typically happens within the first two or three days. So drinking adequate water means you are helping to flush the excess out more quickly.

Sucking hard candy helps to stimulate saliva, which helps in that same way.

We are typically told to double flush the toilet, use plastic/throwaway cutlery, etc. to avoid contaminating things with the slightly radioactive saliva. These are all precautions to help others avoid contact with unnecessary radiation. If you are isoating yourself voluntarily, these steps might be unnecessary.

In general, it is recommended that we keep a distance from others, not necessarily isolate ourselves. When we hold pets — especially small ones, we tend to hold them up by our neck area. This is not good. But if you have a pet that does not demand cuddling, you might not have to give it up for even the three days, if you can keep some distance. For example, I have big dogs, so it wasn’t necessary for me to hide from them.

I do wish you good luck with your RAI. I hope you are well again, soon.

[Bobbi]

in reply to: Curious about Muscle and Joint Aches After Treatment #1063139

Two thoughts:

First, if you are newly in the normal zone, and have started to exercise, you may be doing too much, too soon. We need to start out with baby steps because returning muscle is probably not as strong as the muscle lost while hyperthyroid.

Second, those of us with one autoimmune disease are slightly more likely than the normal population to develop a second autoimmune disease. Rheumatoid arthritis, for example, is autoimmune. Fibromyalgia may be, but not enough is known about it at this point in time.

In general, muscle/joint aches and pains are not associated with Graves patients who have removed their thyroids. Those patients on antithyroid drugs have a possibility of muscle/joint aches as a side effect of the medication.

I hope you are feeling much better soon.

[Bobbi]

in reply to: Kidney Infection Post RAI? #1063143

I have not heard of kidney infections following RAI, so I suspect that what you have experienced is a coincidence. I hope you are feeling better soon.

[Bobbi]

in reply to: SSI #1063150

What Shirley means when she says keep your head elevated is to put bricks, wood, something like that, under the supports at the head of the bed, or use some other creative method in order to slant the bed. If you prop yourself up with pillows you will create back, shoulder and neck problems.

You might try sending a private message to Jake, one of the founders of this board. He is not often here any longer, but he has had lots of experience with the eye disease, and probably knows a lot about disability issues.

I do wish you good luck. And I hope your holidays are happy ones.

[Bobbi]

in reply to: Optimal levels for pregnancy #1063155

The optimal level you speak of is "normal" levels of thyroid hormone in you body. Our thyroid levels seem to move about within the normal range. So, when we’ve had our thyroids removed, our doctors try to keep us well within the normal range, and more or less away from the edges of the normal range. Similarly, if you are on antithyroid meds, you need to be in the same general spot.

We have heard from people throughout the years who have gone through a successful pregnancy while on the antithyroid drugs, and you may well hear from them. The drug of choice, however, was typically PTU, not methimazole. Both PTU and methimazole are known to cross the placental barrier and pose potential danger to the baby. PTU was thought to cross over in lesser percentages, and therefore was considered somewhat safer. When I was diagnosed in the late 90’s, it was routine for doctors to put their pregnant Graves patients on PTU. But PTU has recently been shown to cause liver damage in sufficient numbers to give the medical community pause, and our doctors seem to be more cautious with its use. Because the meds cross the placental barrier, the dose of the medication you need to keep yourself within normal ranges is extremely important to the baby’s health.

Comparatively: replacement hormone — which is what you would go on after a thyroidectomy — IS thyroid hormone. It is chemically identical to the body’s own T4. The only side effect issues with replacement hormone is whether or not you are taking the proper dose. If you are taking too much, you will have hyperthyroid symptoms; if you are taking too little, you will have hypothyroid symptoms. So, replacement hormone itself does not present the same risks to the baby, or to you for that matter, that the antithyroid meds do. You can receive adequate treatment for yourself, without worrying about the effects on the child. It is not at all uncommon for women to have successful pregnancies after removing their thyroids. The pregnancy is still considered a higher risk than for a normal, healthy woman, because attention must be paid to keep the mother’s thyroid levels within the normal range, and must be adjusted manually, but that is the same consideration as with the antithyroid drugs.

Not treating your disease in order to go through a pregancy though, is probably you worst choice. If you were completely off the meds, in remission, etc., that is one thing. If you need the antithyroid meds to stay within the normal range however, you really do need to keep your treatment going. Both for your sake and the baby’s sake.

There are no easy choices when you’ve been diagnosed with a disease like Graves. You must weigh the factual pros and cons, and then decide which option is most comfortable for you. Your doctor has weighed in. I really think you should get additional input from another, equally well-qualified doctor, and from your baby’s pediatrician about the issues associated with taking the antithyroid meds. You have the ability to "plan" this out, so it makes sense to get input from the most knowledgeable sources around you. And, a pharmacist could give you additional insight about the issue of the antithyhroid meds/replacement hormone.

I do wish you good luck.

[Bobbi]

in reply to: RI treatment in Men #1063164

REplacement hormone IS thyroid hormone (T4), and it works precisely like natural T4 in the body. Since Graves disease is an autoimmune disease, it is likely that whatever treatment option we pick, we will need to be on it forever. There may be periods of time (called remission) where we can do without meds, but the most likely scenario is to have to take the meds – whether antithyroid drugs, or replacement hormone — forever.

Whether you choose to do antithyroid meds over RAI, the decision should be based on the effectiveness of the drug treatment. There are some people whose bodies float into and out of hyperthyroidism while on the antithyroid meds. In other words, the med dose has to be continually changed and the person experiences frequent episodes of "being" hyperthyroid. This is not good. Any amount of time hyperthyroid causes bone lose and muscle loss, and puts stress on the heart. Typically, when we destroy the thyroid (either via RAI or surgery), we do not experience any frequent bouts of hyper again. That said, there are many people for whom the drugs control things very well. If that is your experience, and you are not experiencing any side effects to the drugs, there may be no good reason to switch at this point in time. Or, perhaps, ever.

I hope this information helps.

[Bobbi]

in reply to: kiwi just diagnosed #1063157

Hi, Mikew, and welcome to out board.

Yes, hyperthyroidism is horrid on the body, and it is not at all uncommon for someone to experience the weakness, shortness of breath, rapid pulse, etc., that you are experiencing. I know it is scarey. But our treatments do work, and we can regain our health, particularly if the disease is caught early enough.

The fact that you must wait til the 10th of January to see a specialist is probably no big deal, inasmuch as your GP has started you on a medication that is designed to block the production of thyroid hormone (carbamazole). There typically are adjustments required in that medication, to get it to the right amount (not too much block, nor too little), but it starts to work immediately, and you should feel some relief soon.

The main problem is that you won’t feel relief instantly. That is for two reasons. First, the thyroid not only makes hormone, but it stores it for future use. The drug you are on only interferes with the production of "new" thyroid hormone, so it has no impact on any of the stored supplies. Until they are used up, we typically feel no difference when we start taking the meds. Second, the body takes a beating while hyperthyroid. For example, we actually lose muscle mass while hyperthyroid — which is why you are aware of how weak you are now. There are lots of problems created by being hyperthyroid. We need to get to controlled normal levels of hormone, so that the body can BEGIN to heal. Here in the States, we liken things to hurricanes. You might think of photos of typhoon damage, and think of hyperthyroidism as a metabolic typhoon. Once the winds are gone, things are not immediately back to normal: it takes time to rebuild and repair. That is what happens when we regain control over our thyroid levels — our bodies start to rebuild and repair. The muscle mass we lost starts to come back, and we regain our strength.

The important thing for you to do right now is work closely with the doctor, making sure you get the proper blood tests as needed. Get good nutrition – your body needs a healthy, balanced diet of nutrients right now more than ever. Pace yourself: don’t wear yourself out trying to do what you normally do. My rule of thumb was whether or not I would recommend to my best friend that I do "X" if she felt the way I did. If the answer was "no," then I shouldn’t do it either. Also, when you are given an OK by your doctor, to go back to "exercise" or activities that require muscles strength and stamina, do it slowly: BABY STEPS. When I began exercise again, after treatment, it was determined that I had EIGHT ( percent of the strength of a normal woman my age. Hyperthyroidism is nasty on the muscles, as you have experienced. Again, we do regain our strength. But it’s necessary to go about restrengthening wisely.

Wishing you Happy Holidays, and I hope you are feeling better soon.

[Bobbi]

in reply to: Do any natural/alternative treatments work? #1063326

I am haunted by a young woman I met long ago at a NGDF conference. She was skeletal, had grey-toned skin, and lank hair. She had experimented with treatments based on anecdotal statements like the ones HonestBabe would like us to accept. They don’t work. I don’t know what her life was like after she got proper treatment, but I do know that she had seriously wrecked her health by equating anecdotal statements online with PROVEN treatment options.

I am also haunted by a lovely lady named Ann who wrote to me over the years. By the time she was diagnosed with Graves, her heart had been severely damaged. If she were still alive today, I bet she’d write here and tell people not to mess around with unproven alternatives based on the anecdotal comments of one or two people.

In the many, many centuries when "alternative" treatment options were the only available treatment for Graves, people died. Yes, diet and herbs have been on the table of treatment options for a long, long time. And when they were the only things going, a lot of people died. Much of the data I found when I was researching my treatment options suggested that about 50% of Graves patients died when so called "natural" methods were the only option. And, based on Ann, and the young woman I met at that conference long ago, I question the quality of life that those 18th century folks had who did survive.

Today, we can and do thrive. Do NOT equate unproven, untested treatment options with those that have been demonstrated — on tens of thousands of people — to work.

[Bobbi]

in reply to: Headaches?? #1063243

I suffered from migraines for decades. I was given — by two different doctors — a list of foods to avoid. I discovered that they included most of my favorite foods, alas (spinach, yogurt, chocolate among them). I did not have to completely give up these foods, but I did find that if I was careful, and not eating too many of them in any given day/week, that I got fewer headaches. If your headaches recur, you might check with your physician to see if you can get the list of foods and try it out. I got the list from an allergist, and a neurologist.

Good luck,

[Bobbi]

in reply to: Graves and osteoporosis #1063175

I think you need to sit down with your doctor and find out the answers to your questions. Any of us here could definitely be wrong about the problems with the biophosphonates, and whether or not bone can be rebuilt. It is possible that all we can do once the bone is gone is slow down, or, hopefully stop, any major loss of new bone, but I absolutely don’t know that to be a fact. I know that the info about the osteoporosis drugs hasn’t been good lately, but the media tends to hype everything out of proportion. What you need are cold facts, not exaggeration. And your doctor is likely to have that information. The important issues are what the data is OVERALL based on how many years someone has been on the drugs, and what dose etc. It could be that for you, they are less of a risk than the risk of not taking them. But only a doctor can weigh in with that advice.

I do wish you good luck as you seek answers.

[Bobbi]

in reply to: Took RAI on 11/30/2010 – How Long to Wait? #1063234

The thyroid doesn’t handle the metabolism of drugs. Thyroid hormone acts as a catalyst to the activities within the various organ and cell systems of the body and in that sense has an impact on metabolism. I.e. it influences how fast or slowly your body "runs." I’m not sure whether all drugs are metabolized in the liver, but a large portion of them are. And that use of the word "metabolism/metabolize" is slightly different than the use of the word to mean how fast your body runs. In the sense of the word when it comes to drug metabolization, what the liver does is take the drug (whether alcohol or aspirin) and break it down into a chemical form that the body can use….or not. When the body cannot use a by-product of the drug breakdown, the liver helps to eliminate the chemical from the body.

When you remove your thyroid, you are not "killing" your metabolism. You are removing the thyroid, yes, but you will be taking replacement hormone that is chemically identical to the body’s own T4, and you should expect normal levels of thyroid in your body, AND you should expect, over time, to regain feeling normal again as well. Those of us who have had our thyroid removed (me, Ski, Jake, Nancy, and millions more) live normal lives on the replacement hormone.

As we age, and sometimes with disease, the liver becomes less capable of ridding itself of the by-products of drug metabolization (if that’s a word??), and we can develop adverse side effects from taking the drugs, so whether or not your body handles alcohol/caffeine/drugX well in the future will have more to do with the good functioning of your liver than the fact that there is no thyroid. And, the liver also is a major area where T4 is converted to T3. T4 is converted to T3, naturally, in various other places throughout the body as well, but the liver is the dominant one. And that was true, even before you took out your thyroid.

Also, ablating the thyroid with RAI does not mean that you will have absolutely no thyroid cells left after the treatment. We can often be left with some thyroid cells still functioning, just not enough to make us hyperthyroid again (hopefully).

Recommendations on eating have nothing to do with conversion of T4 to T3 — it’s just that the body desperately needs good nutrition when it has been depeleted like ours have been when we’re hyperthyroid. And, of course, eating wisely keeps us healthier, and our bodies functioning better.

As to whether or not you can safely take a multivitamin, you need to talk with your doctor and/or a well-qualified pharmacist. Pharmacists are trained in interactions between drugs/chemicals/vitamins, etc. and that would be a possible source of good information for you.

Please know that about one week after your RAI, you will be MORE hyper than normal for a few days or a week. When the RAI destroys a thyroid cell, the cell releases it’s stored supply of thyroid hormone into the body, all at once. Its possible that your doctor warned you about this — we call it "dumping" here on the board — but sometimes they forget, and folks panic when they feel worse for a couple days while they are expecting to feel better.

I hope you are feeling much better soon.

[Bobbi]

in reply to: Hard to get pregnant long after RAI #1063218

RAI has never been shown to affect fertility issues. All the recommendations about how long to wait after RAI for attempting pregnancy are based on prudence — wanting both a healthy mom and, as a result, baby. In the area of thyroid, what can affect fertility, or ability to carry a child to term, is aberrant thyroid levels. If a blood test shows that your replacement regimen is either too much, or too little, that could have an adverse effect. And there are lots of other issues as well that interfere with a person’s ability to get pregnant that have nothing to do with thyroid. Including issues related to the fellow. So, when you are indeed actively pursuing having a child, it would probably be a good idea to consult with the OB/Gyn so that tests can be run to figure out what is going on. But know, too, that they cannot always figure out why some people have a problem getting pregnant. My sister-in-law was married for 18 years and actively trying for a child (they even adopted) before she found herself pregnant one day.

I do wish you good luck.

[Bobbi]

in reply to: Headaches?? #1063238

I’ve never heard of an association with the antithyroid drug and migraines. You could check with your pharmacist. Pharmacists have all the info in drug issues, and can be a quick source of factual information. And, I would definitely recommend that you call your doctor. Something like this should be checked.

[Bobbi]

in reply to: Do any natural/alternative treatments work? #1063319

So, to clarify: it appears that Loris had RAI for her hyperthyroidism in 2000, and developed the eye disease in 2007. At that time (2007) she found a book, written by a vegetarian, about a nutritional study of rural Chinese eating habits, and decided to adopt the eating patterns suggested in that book. And she believes it "cured" her.

I would suggest that if any of you are interested in the idea, that you do extensive research first, before buying either the book, or the suggestions in it. Why? Eating a healthy diet IS important to our health. Eating lots of fruits and vegetables (which is what vegans do) is recommended to ALL people, by most doctors. But suggesting that avoiding the ingestion of ALL animal proteins, will somehow allow anyone to beat disease (ANY diseases at all, btw) is, to my way of thinking, completely irresponsible. Hyperthyroidism can be LETHAL if not properly treated, and our treatment options DO work. Further, the suggestions about diet alone being responsible for the results of the epidemiological study in China ignores inconvenient (for the authors of the book) facts like: Masai people in Africa, who ingest a huge amount of animal protein, have no heart disease. Eskimos, whose diets have immense fat content, and very little plant protein content, also have little to no heart disease. The healthiest countries in Europe (Iceland and Switzerland, included in that) have people who ingest large amounts of animal protein. And, in China, where the original epidemiological study was done, the people have the worlds largest percentage of people with stomach cancer. Pesky facts like that, and others, have been ignored by the authors of the book suggested. In fact, the authors of the book drew hugely unwarranted conclusions from pieces of information gleaned from the study.

By all means, discuss with your doctors how to make your diet more healthy. We talk about eating nutritionally dense foods here on the board, because a disease which saps the body requires us to provide ourselves with better nutrition than perhaps we normally do. But do NOT believe that there is any easy, single way to beat disease with diet alone. More specifically, do NOT avoid treatment for your hyperthyroidism in order to try an extreme diet. It has never, ever been proven that diet, alone, can cure all health issues as the authors of this book suggest. Diet CAN make you healthIER. Diet alone does not cure.

[Bobbi]

in reply to: medication quandry. #1063253

What the beta blockers did was mask the symptoms of hyperthyroid a bit. Yes, they help with the tremors and they help protect the heart from too much thyroid hormone, which can cause arrythmias, among other bad things.

We are supposed to wean off the beta blockers. You said that now you "cannot" take them. If you went off them all at once, there is, typically, a rebound syndrome of all the symptoms that they were preventing before. It can take a while for the body to settle down if you went off them all at once.

And, as for waiting: patience was not my long suit when I came down with Graves. Many of us aren’t. But we have to practice patience. KNOW that you are getting well again, even though you still feel crumby. You’ve been diagnosed. The treatment has worked (you went hypothyroid). And, now, you have to find the proper dose of the replacement hormone. It starts to work immediately. But you may not be on the right dose. Certainly, your blood work wouldn’t register the difference, even though it has started working. You really just must be patient a little while longer. Once you are at normal, and stable, levels of hormone, your body will start to heal, and little by little you will feel better.

I do hope that day comes for you soon.

[Author]

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