[ReneeE]

#1018069

Hello!
I only recently found these boards and I have been enjoying reading other peoples stories. I was diagnosed with Grave’s round about the middle of January. I am a 35 yo female in the US. I also have Celiac Disease so the GD shouldn’t have been totally unexpected.

Here’s my story. The main reason I am posting is because I am unsure about doing the RAI and the after effects…is it right for me? I know no one can answer that but me, but I wanted to put my story out there and hear back from you all as to what you think I should do. My endo made it sounds like it was the only option and now I know it is not.

I started having symptoms, looking back, around September. Initially the symptom that took me to the doctor was the tremors in my hands. I have always had a slight tremor and rarely drank caffeine because of it. Two days after I dropped something because my hand was shaking so hard, I went to see my primary care doc. This was about teh beginning of November. She immediately diagnosed me with Essential Tremor (ET), a progressive neurological disorder. Needless to say, I was shocked. She put me on propranolol to calm my system and sent me on my way. Two days later I had an instance of blurred vision that lasted for a while and scared the bejesus out of me. Then my ankles swelled up. I called the pharmacy after hours, and they told me to stop taking the propranolol. The next day I left a message for my doc telling her what happened and she called back to tell me that those side effects weren’t listed as side effects, so it must be something else causing them. She told me to stop the meds and then wait a week and go back on them. I did as I was told and tried again. My swollen ankles had never gone down in the meantime either. I took the medication again despite swollen ankles until my follow up appt around the beginning of December. The propranolol did seem to calm my tremors, which were affecting my job, so I stuck with it. At this appt I complained to her about my gastrointestinal issues too and she told me that I should just take some Gas-X. I got pretty upset with her and so she recommended I go see a neurologist and gastroenterologist. So I made appt’s to see them. She also dismissed my celiac disease diagnosis from 15 years earlier, assuming I was on the gluten free diet because it’s the thing to do these days. (I wasn’t under care when I was diagnosed.)

I saw the gastro right before Christmas and he wasn’t really sure what was wrong with me, I think, so he sent me off with a list of lab work and an appt for an upper endoscopy in a month. We left for the holidays the next day and so I did not get the blood work and other tests completed yet. Now it is the first week of January and I get in to see the neurologist. I am weaning myself off the propranolol at this time too because I had met with the local ET support group and most of them were not on medication and they were showing me ways of learning to deal with the tremors. I also had gone back to yoga class and was trying to relax more. So the neuro tells me that she does not think that I have ET, gluten ataxia or peripheral neuropathy (Celiac disease complications) and sends me off with a lab order for thyroid, liver function and blood glucose testing. Finally, a week later, I made it to the lab for all the work, as it was hard to schedule with my job. (One of the gastro tests was going to take 3.5 hours!) The neuro also sent me home with some low-dose valium to help calm my hands in the meantime (it did help when I took it before work).

It turned out that my levels were Free T3: 19.9 (2.2-4.0), FT4: 4.1 (0.8-1.5) and TSH: <0.007 (0.358-0.3740). As well, slightly elevated liver enzymes. Everything else was normal for me. (I have chronically low B-12 levels, common with celiac disease.) My primary care doc called to say that we should thank the neurologist for ordering the thyroid tests. Yes, yes she should! Oh I was so mad at her. If she would have thought a little harder about my celiac disease diagnosis she might have thought to test my thyroid. It was fine 11 months earlier, but… So anyway, they sent me down to the hospital for the uptake scan the next week and it showed Grave’s. My primary care recommended I see a particular endocrinologist. Of course they couldn’t see me until March. It was January. Luckily I got in to see another endo that two of my friends see (neither have GD) the next week.

My endo recommends that I do the RAI. I am currently taking methimazole, 10mg, twice a day, along with metoprolol 50mg. At first I didn’t want to dot he RAI, it just seemed wrong. Both my husband and I were pretty freaked out that we would purposefully kill off a body part that you need to live. Then I was okay with it and he came around too. Now I am not so sure. One of my friends has had RAI for thyroid cancer and another for GD and they both have seemed fine with their decision. This week, now, after reading the stories here, I am not sure what I want to do. I had bloodwork today after 6 weeks of being on the medication. I see the endo on Monday and presumably we’ll make a decision then.

Continued…

[Bobbi]

#1062522

Hi, and welcome to the board.

I had my thyroid removed in 1996 via RAI, and I have not been made ill by thyroid hormone ever since. I am healthy. Many other folks here, whether they removed their thyroid via RAI or via surgery can tell you the same. There can be ups and downs, especially at first, getting to the right dose of replacement hormone. But removing your thyroid can be one very helpful way to find your way back to living a healthy life.

You do not need your thyroid to live. There are tens of thousands of individuals who live very well without their thyroids. It isn’t like a liver, or a heart, that needs to be transplanted. It is not like a diseased pancreas for which there is no good alternative. Our replacement hormone regimen, while not "perfect" is very, very close to our normal thyroid hormone product, and it works very well.

What you are seeing, when you read boards like ours are individuals who are currently ill. They are the people who are newly diagnosed, or who are going through those initial ups and downs of treatment. People who get well again, get back on with their lives and do NOT populate the illness boards online. Check it out. Go back six months or a year in the archives of this board and look at the postings. They look EXACTLY the same as they do now, but the people posting are DIFFERENT. Almost completely different. NGDF made the decision long ago to have moderators who had gotten well again as facilitators for this board, and for our local meetings. It is such a wise thing to do. Ski and Kimberly and I can give you that slightly different perspective on things — the "Wellness" side of the disease, that is typically missing from online boards. Ski and I did RAI. Kimberly is on antithyroid drugs. And others, did surgery.

We cannot tell you what to do. You need to decide that with your doctor. It’s a hard decision, no matter what. BUt I can tell you that our treatment options do work to make us healthy and well again — even if the option includes removing your thyroid.

Wishing you good luck and good health soon.

[ReneeE]

#1062523

Thank you Bobbi for your response. I think the fear factor of the RAI is what has got me going right now. And reading about the troubles that other people are having with all types of treatments…so thank you for pointing out that most of the posts on here are illness related and not many about how things are going after successful treatment.

But it feels like the ATD is working as I have been sleeping better. Apparently I was having night sweats and didn’t realize it. I have also gained back the 6 pounds I lost. I had been eating everything in sight! And I am getting my strength back, even so that I was able to ski two days a week ago. Looking back, and reading about the GD, I realized that I have had a lot of the symptoms but that they were ones that were easily blown off or attributed to something else. My blood pressure had been higher, for me, as I am on the low end usually. So much so that nurses will often ask me if I am feeling okay when they are done. But since it was in the ‘normal’ range, I was fine. I had an intolerance to heat and my internal ‘thermostat’ as I like to call it, was running very hot. Getting ready in the morning was causing me to sweat and make me feel like I wanted to throw up because it was so hot. I wasn’t as cold all winter when I would lie down in bed nor at work when the other girls were all cold, I wasn’t cold like I usually am. I’ve been having these funny little instances where my stomach would feel ‘sour’ – that’s the only way I know how to describe it. Not nauseous, but sour. I had no strength in my legs, so much so that it was hard and painful for me to make it up the whole flight of stairs at work. And of course, the tremors. And general anxiety. Bowel troubles, mainly foul smelling gas that usually only occurred in the late day and only when I am moving around. Itching, mainly from my thyroid area (doh!) down to my belly button. No rash, just itchy. Then my shins and calves got really itchy and they bleed really easily when scratched. Then that cleared up and I got an eczema-like scaly rash on my tush. Then that cleared up and now we’re back to the itchy lower legs and the tush rash is coming back. The endo looked at my legs six weeks ago but didn’t say anything about it. I am not sure if it it the rash that goes along with GD or not… I do not appear to have TED.

So, like I said, I feel like the ATDs are working, just how much, we’ll see on Monday. I just don’t know if RAI is the answer if the ATD’s are working. But the side effects of the methimazole make me nervous too, taking it long term. And the potential for relapse. So…I don’t even know anymore…I hope to feel more settled on Monday after my appt when I know better where I stand. I just feel rather pushed into the decision, that RAI is the only option, according to my endo. She used the words definitive treatment. I think I have seen statistics stating that RAI has about 90% success rate and the ATD’s only like 40% after a certain number of years…anyone have any other stats?

Thoughts and stories are welcomed…
Thanks
Renee

[snelsen]

#1062524

HI Renee,
It is so wrong for the first person who saw you, not to have done a thyroid panel. I am so sorry. I do hope this physician remembers this, and orders the lab at the first visit of someone who has your symptoms. Fortunately, it is becoming more and more common for doctors to THINK of Graves’ when a person (and much more frequently, a woman) presents with the symptoms of hyPERthyroidism or hyPOthyroidism.

What a marvelous "reporter" you are, and how well you know your body. And now you know more, and have a diagnosis, which, I found 100% reassuring, rather than living in the undiagnosed and untreated limbo that I was experiencing (with all of the symptoms you experienced, and my heart rate was in the 160’s, which is dangerous.)

Bobbi’s post pretty much summarized all of us, and the struggles we experienced, with the outcome of regaining our lives, being in the "normal" population, and rarely posting on the boards. I am so grateful to this organization and the people in it,that I think I will continue to post forever! For I think the best kind of support is from people who are having the same experience.

As you learned from Bobbi, there is no one "definitive" treatment. Your endo may have said RAI, for no reason other than that is what she’s heard of, or she may have her own bias. I would like very much for her to have presented the three options in a neutral manner, with pros and cons of each. There are three options. Pretty much variables that contribute to which treatment, are the following:
***Personal preference. Some of us make a choice because we absolutely do not want the other two choices. THis is absolutely fine. Our reasons differ, and we do not have to defend them. Once we "own" the choice, there is usually a great relief in taking action that is right for us, and moving on with your life.
Surgery. My choice was surgery. I want action, I wanted it now, and to move forward as fast as possible. I had no interested in aDT’s long term, and I did not want RAI. I suggest you use the search engine, if you have not, and type in "surgery, or thyroidectomy," and read the experience of others. In the recent past, I have referred the posts of lhc11. Start at the beginning of her posts, and read how she arrived at her decision. Many on this site have chosen surgery. Thyroidectomy is not a complex surgery, but the procedure must be done by a surgeon who does them frequently. We learned at the last conference (my first) that the minimum should be 50 a year.

ADT’s-This is also an option, and it has worked well for some of us. If it doesn’t control Graves’, or if a person decides they do not want to do ADT’s long term, the other two options are always there. As Bobbi said, Kimberly is currently on ADT’s.
It’s possible that a person can choose ADT’s because, like me, they did not want the other two choices.

RAI-As you will see from the recent posts, this has been chosen, and people have been happy with it. Bobbi and Ski chose RAI. And, of course, the RAI folks are very happy with their choices, either because it was their first choice of the three, and/or they did not want the other two.

Better stop this post before it is too long.
Shirley

[Ski]

#1062525

Bobbi and Shirley have done a great job getting you the info you need ~ I just wanted to pop in and reassure you that, as your levels normalize with ATDs, it’ll be MUCH easier for you to wrap your head around what’s going on, and to objectively evaluate the treatment options in order to decide for yourself which you prefer.

Doctors don’t always let their patients know there are CHOICES of treatment for Graves’ ~ not every disease is like this, but Graves’ is a "fortunate" diagnosis, at least in that we get to pick how to proceed, within reason (for example, a hemophiliac "couldn’t" choose surgery…). ATDs work for most people right away, and that’s why they are usually the first line of defense. Remission can be hard to come by, but then again, many patients are managed on very, very tiny doses of ATD eventually, which isn’t technically remission, but also carries far less potential for side effects going forward. If you are unsatisfied with ATDs, or uncomfortable with them, you can choose between either of the methods for removing your thyroid, and go on replacement hormone. Some doctors will say that it’s easier to manage thyroid hormone levels when you start from zero and add replacement hormone, but that’s based on a wide range of patients, and some patients do have a fairly easy time regulating on ATDs, so always remember YOU get to choose. The doctor has input that’s valuable for you to consider, but the ultimate decision belongs with you.

Once your levels normalize and you get your head back (it can take a while, I’m not sugar coating that!), you’ll have a better time figuring out what’s really right for you. In the meantime, I would resist any attempts by your doctor to "bully" you into RAI right away. If your levels are affected positively by the ATDs, there’s no need to rush into RAI.

Glad you found us!

[Kimberly]

#1062526

Hello – A couple of quick notes on Anti-Thyroid Drugs:

1. The more serious side effects (White Blood Cell and Liver issues) with ATDs usually occur within 90 days of starting the meds. I don’t know that the risk ever goes away completely, but it does appear to decrease once you get past that 90-day mark. If you decide to continue on this course, you will want to get regular testing (Complete Metabolic Panel & White Blood Cell Count) done to check for potential side effects. Also, should you ever experience a sore throat with fever, call your doctor’s office ASAP, as they may advise you to stop the meds until you can get a WBC done.

2. Although many docs will only allow a year or two on ATDs, I am seeing more doctors allow patients to remain on ATDs longer term *if* they can keep their levels stable with a relatively low dose – and *if* they remain free of side effects. I’ve been taking ATDs for close to 3 ½ years now.

I remember making a good old-fashioned “pro” and “con” list when I was diagnosed, which helped take some of the emotion out of the issue. My doc did not offer surgery as an option, but there was a recent study indicating that this option is safe and effective, and should be offered to patients more often as a primary treatment option.

[ReneeE]

#1062527

Thank you to all of you for your responses.

I had my appt today with my endo. I questioned her about why we hadn’t talked about all three options. She said the surgery just isn’t done anymore and despite her being fairly young and fresh out of school, I would have thought that she would have known that it is done quite frequently. Maybe it just isn’t done so much here where we live. I don’t know. I wasn’t sure what to say to her about that.

As for the drugs she said that the majority of people end up becoming hyper again, which I understand, and that it is much easier to control the thyroid meds from a hypo standpoint.

And she kept saying her (apparently) favorite phrase, "RAI is a definitive treatment".

So although I don’t feel like we really had a discussion about the options, I am still leaning toward the RAI. My T3/T4 levels were in ‘normal’ range and my BP was in my ‘normal’ range due to the metoprolol. Free T3: 3.1 (2.2-4.0), F4: 0.9 (0.8-1.5), TSH: <0.007 (.358-.374). I understand that it takes a while for the TSH to stabilize…

I had anticipated that my levels were in range after these six weeks as I have gained back the weight I had lost, only a few pounds, and I am sleeping better. The tremors are being controlled by the beta blocker and the itching on my legs has toned down. The only symptoms that haven’t gone away are the tummy/bowel troubles and the heat intolerance with sudden hot-flashes (I’m only 35!), to which my doctor said today shouldn’t be cause by my thyroid anymore. What??? She said it must be something else. Well, I kind of doubt that…And no, I had never had this issue before the assumed onset of the GD. Anyone else continue to have hot flashes?

She did reduce my methimazole and the b-blocker to half what I was on before. So now just 10mg/day of the methimazole and a beta blocker every other day for a week and then I am to go off of it.

So, I let the doctor go ahead and schedule the RAI. It is set for March 30. I figured I could take it that afternoon and then only miss two days of work and then have the weekend to get rid of the excess. The girl that sits next to me at work is trying to get pregnant and had a miscarriage recently so I don’t want to cause her any distress by sitting near her after the treatment. I should be able to work from home so at least I won’t have to truly take off vacation days, just be at home.

We only had a couple day window in which to schedule or else we’d need to wait until after April 16th as we’re taking a vacation April 9-16 and getting on a plane, which I understand can be a little problematic. But in theory the trip should be fine with the letter from the radiologist, right?

Then I came home and was discussing it further with my husband, always knowing that I can reschedule if needed. He hates to fly and there is a lot of anxiety for him to get on a plane and make it through the flight. He would prefer to not have any potential for security issues (and me getting upset) due to the radioactivity, even with the letter, as this will just heighten his anxiety on the trip. We also talked about whether it is smart to go on a vacation so soon after the RAI in case anything were to happen. I wouldn’t be near my doctors or records (which I could easily take with) and there is a possibility for making our vacation less enjoyable than it could be since we’d be within the 2 week ‘dumping’ time period. What do you think? Would you wait until after the vacation to do the RAI?

I also called my eye doctor and left a message about the recent GD diagnosis. My endo looked at my eyes and said they looked fine and I don’t think I am having any dryness but I figured it would be a good idea to let him know. My annual eye exam isn’t until July. I just want him to look at my chart and make sure he has no concerns before I move forward with the RAI. I should hear back from him later this week. They might try and see if insurance would let us move my annual exam up a bit so that I can come in now rather than later.

So, now I am thinking about waiting to do the RAI until after the vacation. Do you think that is a smart move?

[snelsen]

#1062528

Hi Renee,
Well, you are feeling much better except for GI stuff, but basically much better.
You have made a decision about RAI.
YOu have excellent thinking and insight in your endo, her pluses and minuses. You are ok with it. She is incorrect @ surgery as an option, but it doesn’t matter that much. You have your decision, and given the circumstances, sounds like it would take a lot more work on your part to explore the surgical option, and it is a good one. You know it is NOT a definitive treatment just by reading the posts on this site.

The heat flashes? My guess is that is related to Graves’. YOur endo is really new, with not a lot of experience, it seems.
I’d deal with what you have on your plate now. If the hot flashes continue, (and I know they are unpleasant) you can deal with them later (if they exist.)

In answer to your question, and of course, you will figure it out for yourself,….
but it seems there is:
– enough stress (husband’s anxiety, the fairly real possibility of getting hassled by TSA, letter or no letter)
-the fact that you just might feel more comfortable being home and available after RAI.
– YOur concern about the "dumping" is a real concern, and it could screw up your vacation if you feel like crap.

So, my vote is to postpone until you return from your vacation. Seems less stressful for you.
Shirley

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