[almathea]

#1017888

Hello folks, I was diagnosed with Graves a few weeks ago. In a way it was a relief because I was having some crazy hot flashes, was constantly out of breath, had hand tremors and suddenly developed hand and foot eczema (which I guess can be a symptom, anyone else?). So at least I wasn’t as terribly out of shape like I thought. I have gained some weight, partially because I have been starving and eating a ton, I was pretty skinny to begin with 115 up to 122. The weight gain has been frustrating not because I hate how I look, but because my pants don’t fit. My heart rate was 155 resting when I was diagnosed, and after two weeks on beta blockers I’m down to 110, though we’re trying to get me to 100. My levels have been crazy high or low, .0006 one and 37.9 the other, I don’t have the blood work in front of me.

So I’m trying to decide between RAI and the medication. The surgery scares me because I work in radio, so I really cannot risk having my vocal cords or anything else like that nicked.

The meds scare me because I’m 28 and would like to have kids in a few years, which I’ve heard is more difficult on the meds. Plus I’m prone to pneumonia so anything that lowers my white blood cells seems scary.

On the other hand, I have had people tell me that they felt like removing their thyroid changed them as a person. I’ve always been very energetic, I don’t think I could do my job if I wasn’t, and I’m afraid of losing that part of myself. I’ve also have three members of my family die from cancer, so anything that might increase that is also frightening.

I was wondering how other people made this decision, and if they regretted it at all.
Have other very active people gone through with the meds and been ok? Did it completely take over your life?
Has anyone else had eczema?
Has anyone moved to somewhere far away and found treatment difficult? While I currently live in the Bay Area, California, I might be moving to Hong Kong for a job opportunity in a year or so.

I’m seeing two endocrinologists in the Bay Area before I make any decisions, but would love to hear from your experiences. I’ve been reading of people’s experiences on this board, and appreciate how nonjudgemental you have all been.

Thanks,
Alma

[vplekenpol]

#1061460

Hi! I am newly diagnosed with Graves as well and sound in a very similar position. I am seeing a specialist at Stanford University Hospital so I feel I’m in good hands. I live in Shanghai, China – just happened to be visiting my parents in California when my symptoms spun out of control – Previously I had an excuses for the symptoms (Stress, not sleeping, etc.)
He advised me to do the RAI because of my traveling and being in China – less complicated to manage and not too many Hyper risks. However, I can’t do it until Aug 3rd because he wanted to "cool me off" on meds first so I wouldn’t storm. However, now after reading 2 books, several articles and this site – I am officially confused! Some love RAI and some seem to come out worse! So, I just emailed my doctor this morning saying I want to TRY meds for a year first before I make any irreversible decision – if he agrees – he is much more knowledgable than I – so I think I will defer if he believes too risky and best plan.
All that being said – there is a GREAT Endocrinologist in Hong Kong that I just discovered through a friends recommendation. Send me a private message if you would like his name and contact info. He travels to Shanghai every 6 weeks, so this is making me feel better to try meds.

I lived in HK before and it is FABULOUS! Please don’t let Graves ruin such a great opportunity for you!

Keep in touch!

[Kimberly]

#1061461

almathea wrote: The meds scare me because I’m 28 and would like to have kids in a few years, which I’ve heard is more difficult on the meds. Plus I’m prone to pneumonia so anything that lowers my white blood cells seems scary.

Hello – I’ve never heard that conception is more difficult on Anti-Thyroid Drugs, although having thyroid hormone levels that are out of balance *can* affect the ability to conceive, regardless of the cause. Yes, the drugs can cause a lowered white blood cell count, although the extreme version of this (agranulocytosis) is pretty rare.

I’ve been on Anti-Thyroid Drugs since 2007, and although my WBC is perpetually on the low end of normal, I haven’t had any serious issues. (Knock on wood…)

This is one of those cases where a good old-fashioned pro and con list can be helpful!

[almathea]

#1061462

Hi all, thank you for all your responses. I ended up on the meds because my eyes have been continuing to protrude. However, I have been having a terrible reaction, every morning I vomit, while putting on 13 lbs in two weeks! Unfair!

Right now I’m looking at getting my levels down so I can have surgery. I just can’t live with this nausea for two more years, especially when I my never go into remission. I know that the meds work really well for some people, just not for me.

[Bobbi]

#1061463

I think it is very helpful to make an OBJECTIVE list of the pros and cons of the different treatment options. Online anecdotal commentary may not be helpful. Most of the online boards are dominated by illness, not health. Think about it: how much time would YOU dedicate each day to following a board and posting, if you were healthy and living your life? Evidence? Go through our archives and read posts from every six months or so. You will see that the names change regularly, but the stories remain the same. But once people get healthy, they drop off, rarely to be heard from again. Here, the NGDF tries to keep healthy people posting by naming us "moderators." Kimberley (meds), Ski and I (RAI), are here to give you our input and try to give perspective. Shirley also is a help, and she had her thyroid removed surgically.

So, try to make an objective list of the pros and cons. Then, allow your emotional response to things to weigh in. There are three, proven effective treatment options. Your doctor will give you his/her advice. Listen carefully if there are medical reasons why he/she thinks that you should do one over another. That matters. Medicine is not a "one size fits all" type of thing. Some of us should avoid specific treatment options for very good medical reasons. Your doctor will indicate those.

It’s not an easy thing to decide, but know that most of us regain our health. Our treatment options do work in the majority of cases to control hyperthyroidism (the enemy).

Wishing you good health soon.

[lammie]

#1061464

Hey Alma
I’m 27 and got diagnosed Oct 2008. Back then I didn’t research GD as much so I wasn’t really aware of RAI until later. So firstly my endo got me to try the meds (carbimazole) for a year or so but I was always hyper. Once I went a bit hypo but then meds was reduced and went back to hyper. What I was told is that you’re meant to try the meds first to see if you go into remission. Since it wasn’t really working for me and this has been such a tough time, we finally got talking about RAI. So I finally did it Jan this year. So my decision to do it was because it’s probably the next option after meds and I had bad anxiety and so I needed to do something quick!

Nothing happened to my vocal cords and I would say I’m still kind of the same person but just someone struggling to deal with this. I did hit hypo stage and gained around 3/4kgs and started taking thyroxine, however, he gave me a dose too high and I went back to hyper. So 6 months has passed now and bad news for me still is that I’m still hyper. It’s because everything is such a slow process you basically are always changing your meds around and everything needs time and then you do your blood tests. Although this does sound negative, I do not regret taking this road. It just sucks that my endo gave me a higher dose coz I probably was close to being balanced. Right now I’m not taking any meds because I’m still waiting for the thyroxine to get out of my system but I do have to say that I am not as hyper as before so I actually feel almost "normal". Basically after RAI you hit the "dumping" stage and that’s when your symptoms are out to play and it is serious struggle town from there. But afterwards you do eventually feel better and I feel like I’m a month or 2 max away from being completely balanced.

Good luck on your road to recovery! You just have to remain positve and stay strong and know that there is a light at the end of the tunnel…coz I really could have let myself gone downhill but you just can’t with GD.

[snelsen]

#1061465

Hello all,
There are a few people on this thread who are pretty much in the same position, trying to decide which treatment to have to manage Graves’. It has already been said that making an objective list of pros and cons, with info that you learn from your docs, is a good idea. Having said that, there are many objective variables that contribute to options presented by endos. Sometimes, it depends on where they went to school, and/or they simply have an opinion for no real reason. Just like you drive to a destination one way all the time, but there are several options for getting there. Having said that, do ask why they recommend a certain choice, if they do. Occassionally, there may be a medical reason for one choice over the other. You should know this and understand the thinking. Second opinions are good, too. Many endos of them tell their patients, "It’s your choice." Most of the time, it is our choice.
Then, add your own subjective thoughts to that treatment. There is no one right answer.

RAI– It is a good choice. It’s right for the people who chose it. You have already read that it is a choice that has been made by many on this board. Some people are silly scared of radiation of any kind. There is no basis for this at all, with RAI, and the lifetime dose is inconsequential. So they you are operating with misinformation. But if you believe this, and can’t get over the hurdle, choose another treatment. Some people just don’t want it. No reason. That’s ok. Two of the facilitators chose it and they are happy with it.
Surgery-It is a good choice. It’s right for the people who chose it. I represent someone who had surgery. It was my choice, and I am happy with it. I had access to good surgeon at a large medical center.
Meds-it is a good choice. It’s right for the people who chose it. Another facilitator chose meds,and she is happy with her choice. If it does not work at some point, you have the other two choices.
Owning your choice, and not being pressured by others is very empowering.

From my perspective, Some thoughts that occur to me to consider about the the three choices are;

1. Surgery- As you would with any procedure, you need to find a surgeon who does thyroidectomies routinely. I might add that the same is true of C-sections, heart surgeries, brain surgeries. Generally, these surgeons are at a larger medical center. So access to a city could rule out this choice. Another very important thought is to get your questions answered by the SURGEON. Not the endocrinologist. They are not surgeons. The incidence of damage to vocal cords is very rare. But it is there. I chose surgery because it seemed the fastest way to get off this crazy Graves’ train. So that made me very happy with my choice. My experience was great.
2.-RAI-Lots of people happy with it. As you have probably read, some people have to have it again, but this is uncommon.
And it takes longer for the hormone to get to a steady state. One thing that is true, that if you have TED, there are some studies that show TED can be worse after RAI. Having said that, other docs believe that this is manageable with steroids.
And there are guidelines about how soon you should try to get pregnant after RAI. It is my opinion that it is important to have Graves’ controlled, and your health back before trying to have a baby, regardless of treatment choice.
3. Meds-If you go the meds route, you need to have labs that include liver function. If there are any issues, they usually pop up when first beginning ATD’s. And most of us on on them anyway, for a short while. Then the incidence is negligible. One thing about meds is, that it is possible that if you become hyper again, you many need to make another treatment choice of RAI or surgery. Or maybe not! Having labs is not a variable to consider when making a choice, for they are a part of our lives for the rest of our life regardless of our choice.

Summary-Graves’ is a lifetime situation. Labs and changes in drug dosage will be part of our lives for the rest of our lives.
Our medications are governed by how we feel and the labs. And we all get better, we all get back to baseline or pretty near it. This is hard to determine sometimes, because the years are rolling by at the same time. ” title=”Very Happy” />
Shirley

[meganet3]

#1061466

New Graves’ treatment with no side effects coming. Going to trials soon I think. Nearly a "cure". Please see the links below.

http://www.suite101.com/content/advance … nt-a354210

http://www.ncbi.nlm.nih.gov/pubmed/21123444

[Rosetoes]

#1061467

I too was diagnosed with graves disease 4 weeks ago and I’m now on Methimazole and Inderal. While I feel normal again,
I know that I am not. When I’m a little late with the Inderal, I feel the symptoms creep up. I am one that is trying the meds in hopes for remission. The doctor says that I have a mild case, and I have no family history of Thyroid disease.

I have read on the Internet that having RAI can bring on bulging eyes more than if you are on meds. I think that scares me the most about Graves disease. I also read that Missy Elliott and Barbara Bush had RAI and they both experienced bulging eyes. And my previous Endocrinologist told me that having the RAI really helps her as a doctor, because the monitoring is easier for her. Note that she is a previous doctor.

If you have no choice and RAI is your only option, then definitely go for it. I did read stats that indicate that 25 to 35 percent of Graves patients develop eye problems, so 65 to 75 don’t.

Good luck.

[Kimberly]

#1061468

meganet3 wrote:New Graves’ treatment with no side effects coming.

This is definitely promising reasearch that is worth keeping an eye on. However, the trials could literally take years — and until they get through that part of the process, no one can say for sure what, if any, side effects will occur.

[erica]

#1061469

HI, I wish you well on your decision making process. I should have had done more research about Graves when I was diagnosed. I didn’t do any because to tell the truth I was kinda freaked out by the whole thing (I had let it go undiagnosed, so I was really sick).

Here is my two cents. I did do PTU for two years, it seemed “easy” and I like You, had planned on having kids in the future, so the doctor said to take the PTU for two years and wait one year before trying. After about two years my white blood count was making the doc worried and she took me off of them. Retested my levels and they were ok, yay, I thought! Well slowly but surely symptoms crept back over about a four year period, but levels were "normal". I dealt, but it was annoying. For the past year I have had yucky symptoms, bad ones for the last 6 months. My doc doesn’t want me to go on PTU again because it has a long term possible side effect of messing with one’s bone marrow. And I still want to get pregnant sometime.

Here is the thing, if you take PTU or a drug like it, there is ALWAYS the chance you could come out of remission (the percentage is high) and you will have to deal with it all over again, and then it could be waaay worse. If you do RAI, there is ALWAYS the chance that it will not be enough, you have to do the RAI again after 6 months or even a year AND you could come out of remission again.

Taking the drugs or doing RAI will leave the thyroid inside your body, therefore your immune system can create antibodies to destroy it at any time (you have probably already had your antibodies levels tested) and this process of having very high antibodies will make you very sick. This is where I am now.

People on this site will probably not like what I am about to write, but I am advocating to take out the whole thyroid. Sure there can be some complications, but there can be no thyroid problems without a thyroid. No more in and out of remission, no more risk of crazy high antibodies trying to destroy the thyroid, no more risk of nodules, or thyroid cancer, this is what my doctor has told me and I am on board! If I had taken my thyroid out to begin with I wouldn’t be having these problems now. Now I have Graves AND Hashimotos, WITH a goiter with nodules. I am going to see if they are cancerous next Monday. I leave myself wondering why I didn’t find out more in the very beginning. I was never told to steer clear of iodine or artificial sweetners either having Grave. I wish I had had it taken out in the beginning.

Check out all the hard data for each option. Think about what you would do if the worst scenario happened for each option and really weigh out what will work for you in the end. There will be advocates of each treatment, Just PLEASE know that two treatments can lead you back to feeling the way you do right now, and if that happens what will you plan to do then?

There are new much safer ways to do thyroid surgery than in the past, and after years and years of this thyroid controlling my life I am done with it!

Good luck! I hope you are happy in your choice and healthy soon ” title=”Smile” />

Erica

[Bobbi]

#1061470

When removing every bit of thyroid tissue is required — as with thyroid cancer patients — surgery is employed WITH a follow-up of a very large dose of RAI. Typically surgery does not remove absolutely all thyroid tissue due to the presence of the parathyroid glands and a nerve that serves the vocal cords that runs through the thyroid. So, even with surgery "some" thyroid tissue is typically left behind, even if it is relatively wee.

Also, iodine is required for healthy function of the thyroid gland. Too much, or too little causes the thyroid (when we still have one) to malfunction in unpredictable ways. Avoiding excessive iodine is always a good idea. But it is not a good idea, while you still have a thyroid, to try to eliminate iodine. While you still have a thyroid, you need that iodine in order for your body to produce thyroid hormone. And if you have removed your thyroid, whether via RAI or surgery, it really doesn’t matter any more. The only place iodine goes in the body is the thyroid gland (to make hormone).

[snelsen]

#1061471

I think Erica’s email is very informative, and here points are well taken. Especially in the post she is responding to, for she is giving her own experience.

I certainly cannot argue that with thyroid CANCER, it is possible that radiation is given as a follow up, but that is not really the topic. In addition to that, (still not staying of topic of Graves’, but on thyroid cancer, there are usually two treatment-RAI or surgery. The treatment is based on the stage of the cancer. This one is a very slow growing cancer. Radiation does not always follow. Dependent on stage and node status. Read about it on web MD and/or NIH website if you want to learn more, or ask an oncologist.

But back to Graves’, Erica’s experience represents one of the possibilities that can happen. And she’s DONE with ATD’s and choosing RAI. So she had surgery. This is a good example of making her own decisions, based on her own experiences, and sharing them with the group.
Shirley

[nativegirl]

#1061472

Hi everyone – thank you for your information and experience. I too am just being diagnosed with Graves, and didn’t think it was a big deal – I would be able to get some pills get cured and go on my way … it sounds a little more complicated. I have a few basic questions you may be able to help with. I’m taking beta blocker metoprolol (and still have high heart rate), tranxene anti anxiety, prozac and now thyroid medication methimazole. Any tips on these? Esp the thyroid rx – how long before I get relief? I miss walking/running/biking – can I start doing these things without having a heart attack ?( as long as I feel up to it of course). Will I ever be able to quit shaking? Am I niave to think I can take these pills, say prayers and get better forever? There is no family histroy of thyroid disease in my family, could stress really be the reason why this started over a year ago? Is it just that I am hyper, or has I always been hyperthyroid and didn’t know it? I just thought I was a spaz/airhead. Also, when will my hair stop falling out?
Thanks for listening!

[Kimberly]

#1061473

Hello and welcome – The methimazole starts working right away to block the production of new thyroid hormone. However, it can take some time for the body to use up its existing stores, so it could be a few weeks before your levels are stabilized and you fully start to see some relief from your symptoms (including the hair loss). Give your body some time to heal and make sure that you get a doctor’s blessing before jumping back in to any strenuous activity.

It’s hard to pinpoint exactly when Graves’ started, but many patients can look back and see specific symptoms that *might* have pointed to a Graves’ diagnosis. The current theory is that we are genetically predisposed to getting an autoimmune condition and then some “trigger” actually activates the disease. The trigger might be stress, a viral illness, something in the environment, or physical trauma.

On the meds, just make sure that your doctor is aware of *all* your prescriptions.

Keep us posted on how you are doing!

[Author]

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