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My doc is pushing me to the the RAI treatment asap and in the mean time I’m put on methimazole. I don’t want to take pills that mess with my liver and bone marrow. I have two babies under 2. I stay home with them I don’t want to be away from them for the 6 days it takes the radioactivity from the RAI to get out of my body. Is there anything else that you could clue me in on trying before I take this big step of RAI and drugs? Any alternative options? I had a panic attack in the doc’s office because I don’t feel any peace about the situation. Thank you in advance for your opinions.
Jayda
First of all, Happy Mother’s Day! You sound like you have your hands really full right now with babies. And you’ve been handed another issue — Graves. That’s hard, I know.
Hyperthyroidism is potentially lethal. In the days before our current options — however limited you find them — approximately 50% of people with Graves hyperthyroidism died. Those who survived did not necessarily have their health. Many of them were invalids. So, you absolutely must make a choice between the options we have for treatment. Our treatment options give us back our health in the vast majority of cases. And your health is crucial to the happiness of your children, too. There are two major treatment options that have been proven, time after time, to return us to health if we catch our hyperthyroidism soon enough.
One option is to try to control the hyperthyroidism with drugs. The side effect issues for these drugs can include liver impairment, low white cell count, and other somewhat less serious issues, but these side effects are rare. 5% or less of patients who use the antithyroid drugs suffer these side effects — if I remember my data correctly. There are a few issues regarding the antithyroid drugs that you need to explore if you are breast-feeding. Methimazole will cross in some percentage or other in your breast milk. Whether it is safe for your baby, or not, depends upon how high a dose of the drug you need to keep you from being hyperthyroid. (And, remember, you have no choice but to treat your hyperthyroidism.) So you need to talk with your doctors, and your babies’ pediatrician if you are breast feeding.
The other option is to remove the thyroid, which would require you to go on replacement hormone. There are two ways to remove your thyroid. By far the most common is — as your doctor recommended — RAI. It involves no hospitalization, but it does require you to spend a week away from your babies. I remember how hard it was for me to contemplate a four day vacation away from one baby, when I was a new mom. I know this is not a decision that would be easy to make. But, my baby survived her stay with her loving Grandma, and if you have someone like that who could watch your babies, they would survive well, also. The other way to remove the thyroid, which is becoming somewhat more common lately, is surgical removal. This involves at minimum a day of hospitalization, and has a couple of side effect possibilities. The normal adverse side effects of surgical procedures (like infection, etc.) are there. Plus there is the possibility of damaging your parathyroids, and the nerve which operates the vocal chords. These side effects are not common, if you use a well-qualified surgeon who does lots of thyroidectomies and has a good track record of low rates of complications.
Replacement hormone – which we typically have to use after either RAI or surgery — IS thyroid hormone. So the only side effect issues with it have to do with whether or not you are getting the appropriate dose. Too big a dose, and you will be hyperthyroid again; too little and you will be hypothyroid. But since it "is" thyroid hormone, there are no side effect issues with respect to breast-feeding, if that is a concern.
I recommend that you talk with your doctors, and make up a list of pros and cons for each of the options. Try to be as OBjective as possible. You can consider fears etc. last, but try to be rational and objective when you list the pros and cons. If your endo has told you of health issues that might interfere with you doing one option (like surgery, for example), take those health issue concerns VERY seriously. While it is possible for us to overrule our doctors and choose an option that we have been advised against, it isn’t something to do lightly because we will be spending the rest of our lives with the potential consequences. And, after mulling things over for a few days or so, make you mind up, and go for it. That’s really what we’ve all done here. We’ve made our best effort to make a good choice for ourselves, and we’ve moved forward. And, the majority of us have gotten well again, and gone on with our lives.
I do wish you good luck with your decision.
Just a quick update on side effects from Anti-Thyroid Drugs: about 5-10% of patients will experience *mild* side effects, which can include itching, joint pain, and rashes.
A reduction in white blood cell count is not all that uncommon with ATDs, but the most serious WBC issue (agranulocytosis) is quite rare and occurs at a rate of about 1:400 or 1:500 patients.
The good news is that the WBC and liver issues *usually* resolve themselves once you stop taking the meds.
I don’t have stats on how many patients experience some level of liver issues, however, the FDA tracks the number of severe complications with anti-thyroid drugs. The average occurrence for liver failure (which can require a transplant — or can be fatal) appears to be around one patient per year, since the FDA started tracking in the 1960s. So this is very, very rare — but it *is* something that patients need to be aware of. The vast majority of these issues have occurred with patients who were taking PTU, which is why Methimazole is the drug of choice, except in certain specific circumstances.
Is there anything you can control as far as your diet or something to manage it better? Can it go away? My levels are sometimes bad but sometimes better. I didn’t have to be on the anti-thryoid for a while but now it came back really bad. There is no natural way to cope with graves? Is there anything out there that people have tried? before jumping into radiation or harmful drugs?
No, there really isn’t. Other then the three choices you know about. 1. ATD’s 2. RAI 3. Surgery, thyroidectomy.
It really is the safest way for us to go. Bobbi’s post to you gave a wonderful and factual explanation of the reasons why.
I have regarded these three choices as wonderful lifelines to a life of full health, and with time, getting back to you were before you ever heard of Graves’.As you have learned if you have read many of the posts, or used the search box to explore more posts, each of us choses the treatment that feels "right" for us. Sometimes we make a list of pros and cons for our particular situation, sometimes a person will feel very strongly against one or two of the choices. And that leaves the other one!
I chose surgery, have always been glad, and I think you will find that most of us are happy with our choices, because they were "OUR choices, and we did not feel pushed into a specific treatment by doctors, family or friends. Having said that, there are variables that should be included on the list of pros and cons that do not have to do with personal preference, and they are pretty much logistical or occasionally a medical choice. There are rare times when the surgery option is really indicated.
Logistical choices could include distance from the treatment area, no access to RAI where you live, no reasonable access to surgeons who have at least 50+ thyroidectomies in their practice, just to mention a few. Generally, personal preference can rule.
Best luck with your research and your "process." We have all been there. To address your questions in your last post…..
No, diet won’t make it better.
No, it does not go away. We will always have Graves’. And you have pretty much learned this by your own personal experience with getting hyper again. To repeat Bobbi’s email, hyperthyroidism untreated can be dangerous and fatal.
I am sure if you search enough, you will find anecdotal stories of people who have tried other things. But there is no science behind it,and the testimonies are just a snapshot of one day, not of how the individual continued to do. There are no evidence based, longtitudinal (over a long period of time) studies of any other treatments.My personal opinion is that taking a thyroid supplement is not a harmful drug. It is taking a critical, necessary for life, hormone that we need. Our bodies used to produce the right amount for us, then we got Graves’ and it is a whole different story. I imagine when you refer to harmful drugs, you are not referring to thyroid replacement, but rather to ADT’s (re harmful drugs) but wanted to address your question.
Then, again, review Bobbi’s and Kimberly’s posts addressing these concerns.
Shirleyshould I try and find a different doctor if he won’t even consider surgery for me. He told me he only does surgeries if they don’t respond to ATD or RAI or if i’m pregnant or dieing. I feel the most peace about the surgery. I’m having a really hard time with this. Probably just a side effect of graves lol but its just frustrating!
hi, I want to respond to your email tonight, but I am too tired! Will do tomorrow!
ShirleyIf surgery is the option you prefer, then yes, I would find a doctor who supports that decision, IF the doctor you have now actually has some type of control over your treatment choice. It may be that your doctor doesn’t recommend it, wouldn’t prefer it, but bottom line, you go to a different doctor for surgery, and this one can’t tell you not to go see a surgeon or pursue your own preferred choice. I would make clear to your doctor that surgery IS what you want, that you WILL pursue it, and you will do it through a different physician if he won’t support it. That should wake him up, and if it turns out he absolutely will not support your decision (it’d be odd, but it does happen), then yes, find a different doctor. That’s the one way GD patients are lucky ~ we HAVE choices for treatment, and barring any unusual restrictions for one or another, we get to evaluate all three and choose any one of them to get us healthy again.
Hello – Once concern with thyroid surgery is to make sure you use a “high-volume” center with a surgeon who does at least 50+ thyroidectomies per year. Having an experienced surgeon is important in order to minimize the risk of complications.
It’s possible that your doctor is reluctant to recommend surgery if you don’t have those type of resources in your area. However, I do know of patients who have traveled out of state for thyroid surgery and have been happy with the results. Bottom line, *you* are the customer – and unless there is a specific medical reason to choose one therapy over the others, you should be able to choose the option that you are most comfortable with.
Hi, will you clarify who "he" meaning the doctor, when you wrote,"should I try and find a different doctor if he won’t even consider surgery for me. He told me he only does surgeries if they don’t respond to ATD or RAI or if i’m pregnant or dieing.
Are you referring to the endocrinologist (who, of course, is not a surgeon, and also does not "do" the RAI. The only thing the endocrinologist would manage, are ATD’s.
Regarding surgery. The surgeon is the one who would evaluate you for doing the thyroidectomy. He is the only one.
It is the job of the endocrinologist to mention all three options. In my opinion, there is no way the endocrinologist can evaluate you in any way for a thyroidectomy. So I have another view on that. His job is to present the options. By all means, if you have not asked him before now, tell him that you prefer surgery, and you would like the names of a surgeon or two for you to see. Is he resistant to even discussing it? Ask him why. I know how you feel, when you say you want surgery. That is the way I felt. I asked my endo and my family practice doc to check out surgeons who "did" this surgery, were familiar with it, were familiar with Graves’, and did a lot of them (50+) each year.
As I mentioned in my longer email, there are plenty of people on this site who have already shared their experiences with their choice of surgery, from the beginning list of pros and cons, through the surgery and post op period, through beginning to take their thyroid replacement hormone. Check it out in the search box.As I mentioned in a prior email, "Logistical choices could include distance from the treatment area, no access to RAI where you live, no reasonable access to surgeons who have at least 50+ thyroidectomies in their practice, just to mention a few. Generally, personal preference can rule."
Regarding surgery, Kimberly also emphasized it in her recent post," Once concern with thyroid surgery is to make sure you use a “high-volume” center with a surgeon who does at least 50+ thyroidectomies per year. Having an experienced surgeon is important in order to minimize the risk of complications."
ShirleyIs anti-thyroid medicine to be taken long-term or until the thyroid is reduced? Also in regards to RAI and the replacement hormone medicine, does that medicine have to be taken for the rest of one’s life? As far as worrying about being away from your kids, I would think about it in another way. You want to get better and be healthier so you can live a long and healthy life with your kids.
Edited 8/9/12 to remove spam link
Anti-thyroid drugs (ATDs) are usually taken for at least a year (up to two years) before going off them to attempt remission. That is preferable because it gives the body plenty of time to normalize before stopping the meds, and it typically only requires a very small dose to maintain, after the initial period of narrowing in on the right dose to keep levels normal.
Remission, by the way, is defined as a period of time longer than one year when the patient takes no medication at all, and levels remain stable. Some people go off the meds and enjoy a few months’ time before levels start to elevate again, so that would not be defined as a remission at all. Remission rates are actually fairly low (40% on the first try, lower figures for each successive attempt), but MOST patients respond well to ATDs in terms of lowering thyroid hormone levels. The newest conventional wisdom permits a patient to remain on a very low dose of ATD for the long term, instead of continuing to cycle through starting/stopping and attempting remission, as long as they are not experiencing any of the serious (very rare) side effects of ATDs.
After RAI (or surgery), the goal is to have no remaining functional thyroid tissue, so yes, you need to take replacement thyroid hormone for life. The difference between ATDs long term and thyroid hormone replacement long term is that ATDs are a foreign chemical substance that works on the processes your body uses to either make thyroid hormone or release thyroid hormone, and can, over time, cause damage to the liver and other organs that process the chemicals (as patients get older, their risk of this can increase). Thyroid hormone replacement is chemically identical to the thyroid hormone your body produces, so there is no risk of liver damage. The only problem with replacement hormone is if you take too much or too little, because then your levels will not be right. Low doses of ATDs have less chemical risk than high doses, that’s true ~ something to make note of for your pro/con list, as you go through your decision process.
Replacement hormone is not very expensive, so even if you lose insurance coverage, a patient can usually bear the cost on their own, which is something else to consider.
When I was first diagnosed last summer, my doctor put me on methimazole for 1 year. I wanted surgery immediatly because I never wanted to feel as bad as I did again. After talking to him he explained that because I was hyper and my blood pressure and heart rate were thru the roof it would be dangerous to be put under. He said if it was life or death they would give someone in that condition anesthia but only if necesary. It could be your doctor also has these concerns which is why he is encouraging medicine or RAI. I was very fearful at first to take the methimazole because I had read all the possible side effects, I even posted and ranted about my fears on this board. I can say after taking the medicine I never felt better. Now that it has been a year and my thyroid doesn’t seem to want to cooperate without the medicine, I have to make the decision between the surgery or RAI, but I appreciated my doctor sitting with me, talking to me, and giving me time to take the medication, feel better before making that decision. You should call your doctor and see if you can have a consult with your doctor so you can make a plan for your healthcare that will make you both happy. I was also ready to switch doctors, until I found out his nurses took most of his calls and he wasn’t aware I had been calling. Once I sat down with him and talked and made a plan it put my mind at ease.
I just wanted to say (as probably others have as well) to really research what your body will potentially go through after the surgery. Actually try to research about each option as best you can, talking to people who have done it. if it was as simple as take it out, pop a pill, and feel awesome, everyone would do it-I sure would have. Of course people will have different reactions and “their” story, but at least you will be informed of what could happen and more prepared if something does happen.
When I had first been diagnosed the doctor wanted me either to do rai or to remove it, but those ideas scared me, I knew I didn’t want to take pills for the rest of my life. There is a link on this website to a new york times article of a girl after rai. I felt like I didn’t have any control over those options. I did feel that taking the PTU (with the risks) was a less scary idea. After all, it was worth a shot at no more pills for the rest of my life. If my body didn’t react well to it I had the control to just not take it, then seek other options. I took it for two years and felt great. I was totally fine afterward, felt good and was in remission for about 5 years. Unfortunately, now I do not feel well, but I never regret not doing rai or surgery.Good luck making the choice that is right for you
” title=”Smile” />Firs off guys, this is a really productive thread and should be read by anybody who is considering undergoing treatment for Graves. I have a few things that I would like to say and they are going to mirror some of what has been said, but these are things I truly believe.
Research is important. There is a never a reason to go into a procedure or therapy without feeling confident in your body and the person on the other side. Sometimes these procedures can be scary, but your confidence goes up knowing it might be the only way to save your life. You can also check with your provider even if you have cheap health insurance[/url:ws9anxyr].
Really great thread guys.
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