[Kimberly]

#1063212

Hi Heather – Welcome to the boards…but sorry to hear that your Graves’ is back.

With your Graves’ out of remission, you have the same three treatment choices to work with: Anti-Thyroid Drugs, RAI, or Surgery. As I’m sure you know from your first time around, all three treatment options have their own pros and cons, so you want to do your research and make an informed decision.

One thing to be aware of is that the more serious side effects (White Blood Cell and Liver issues) with ATDs usually occur within 90 days of starting the meds. And unfortunately, your clock “resets” if you stop and re-start the meds. Although these side effects are RARE, you will want to be vigilant and get regular tests for WBC and liver function if you decide to go this route.

Another issue to keep in mind if you decide to try ATDs again is that I am hearing about more and more doctors doing antibody testing prior to withdrawing medication. I’ve been on meds for 3 years, and while my thyroid hormone levels are good, my antibodies are still high. My doc believes that if I were to go off the meds at this time, my hypER symptoms would return again.

I haven’t seen specific stats on achieving remission the second time around, but we do have a facilitator here (James) who is in an extended period of remission after three go-rounds on ATDs. Hopefully, you will hear back from others as to how they approached this decision – and what kind of results they had.

Best of luck!

[snelsen]

#1063213

Hi Heather, I want to reflect what Bobbi said, that you still have the three treatment choices. People on the board have chosen ADT’s, surgery or RAI, generally for their own personal reasons. So I encourage you to re-visit the three options if you are inclined to do so. I am hoping you do hear from someone who has had the experience of recurring Graves’ after ADT treatment.
I would like you to check with your endocrinologist regarding your statement about being on a blood thinner. I am wondering if you have misunderstood the drug which you say is a low dose blood thinner. It is very common to be on a drug, usually atenolol, or related drug, to slow down your racing heart. Perhaps this is what you are referring to? If so, it is important for you to realize that you are not on a blood thinner, and even more important to know it if you are, and to ask the question. And, if the drug you are taking is not helping your racing heart, you should report it to your doctor, including your pulse rate taken throughout the day, plus a resting pulse rate.
I hope you write again. THis is a great website, with great people facilitating and equally great people writing with their experiences with Graves’.
Shirley

[chichi]

#1063214

Shirley,
Hi, My mistake its not a blood thinner, medication it’s a blood pressure med. atenolol 25mg. for the palpitations. sorry for the mis-info.
Heather

[chichi]

#1018199

Hi,
I just joined today, I am really struggling to find some practical answers.

I was diagnosed in 2006 with Graves, went on meds for 1 yr and went into remission. A month ago I went in for my yearly follow-up with my Endocrinologist and had my blood work done and was surprised when he called a week later to say that the Graves had come back. I had felt ok, just a little weak lately. Now I’m back on the Tapazol, and after about 2 weeks the Heart racing started again, So a few days ago he put me on a low dose blood pressure med, which is not really getting the job done. I just about can’t go through the heart palpitations again, that’s how it was first discovered. And I am so tired all the time.

So after all my rambling my question is this, What are the chances of remission a 2nd time? If anyone has any experience with this please let me know. I am feeling so frustrated, and a little scared. I’m glad I found this forum because it’s hard to try to explain what your experiencing to people with out it.

Thanks,
Heather

[Julie3588]

#1063215

Hi Heather,

Like you, I was on ATDs for about a year before going off of them and into remission. After a year, I relapsed and became hyperthyroid again. At this point I weighed my options of either trying the ATDs again or doing RAI (my endo didn’t even mention to me that surgery was an option). I ultimately ended up doing RAI because I no longer wanted to keep waiting to see if remission would occur and the ATDs just didn’t seem to agree with me, I always felt a little "off". My endo told me that each time I tried the ATDs, my chance of remission would become lower and lower. Of course, this was a very personal decision. one person’s choice is not necessarily the best for someone else. I am really happy with my choice, I initially had some regrets after the RAI but a year and a half later, I’m finally starting to get my life back.

I wish you the best of luck. Let us know what you decide.

-Julie

[snelsen]

#1063216

Hi Heather, ya, I was almost 100% sure it was atenolol. I think you said that you noticed no difference in your heart rate and palpitations after you began the atenolol? If this is still the case, give your doc a call, is possible the dose may need to be increased for a while, see what he says. I am so glad you have a good bunch of docs managing your care.
Shirley

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