[pinkphone8]

#1018386

I am new to this board as I was diagnosed with Graves about 8 months ago. It took awhile for my endo to make a definite diagnosis of Graves. Since then I was started on tapazole. I have not done well with this medication. My labs are still not regulated on it and now my endo believes I am having side effects from it. I was having severe muscle and joint pain that I thought was from the Graves or the fact that I was hypothyroid from too much medication. Now I will need to chose another way to go. I am concerned about RAI since I have a shellfish allergy and have had reactions to contrast dye. My endo has consulted radiologist and they said it should be okay. I have done my own research and found that some recommend caution with RAI with my type of allergy. Also I have read about increased risk of thyroid cancer from the RAI. My only other option is surgery which I am not too thrilled about either. Just wondering if anyone could offer an opinion on either one or if they have had similar problems. Thanks.

[Kimberly]

#1064419

Hello – Hopefully, you will receive some responses from members who have had to make this decision. I am not familiar with the shellfish allergy issue, but other factors that might influence your decision are whether you are pregnant (or wish to become pregnant in the near future) and whether you have any existing eye involvement. If you go through recent posts, you will see messages from other members as they worked through the pros and cons of each option.

Best of luck!

[lhc11]

#1064420

Hi pinkphone — sorry to hear you’re having to struggle with this decision, but glad you’ve found this board. I spent a long time using the very good search engine on this site (see the "search" box on every page) typing in "RAI" and "thyroidectomy" and "surgery" and reading all I could when I was trying to come to grips with what I wanted to do only a few months ago. Rather than repeat everything I wrote and have written about the decision to have surgery over RAI (just one person’s personal experience, not a recommendation for you), I’ll just say you can also search for "lhc11" in the search box and you’ll pull up my many posts on the matter. Many here will speak up for the virtues (and negatives) of both methods, but I can tell you that surgery (which I had only two months ago, on June 9th) was absolutely the right choice for me, was nowhere near what I was dreading, and that I don’t regret it for a minute. As I say in other posts, though, how one feels about surgery depends too on the surgical resources that are available where you live or what your insurance will cover.

Good luck!

lhc11

[Bobbi]

#1064421

You have been taking in iodine all of your life in foods that you eat — it is an essential ingredient of thyroid hormone. Shellfish and contrast dyes contain other chemical contents besides iodine. I have heard other folks assume that the problems they have with these things are iodine-related, but I truly don’t see how that could be possible.

Anyway, the pros and cons of RAI vs. surgical removal of your thyroid.

RAI is not indicated for anyone who is pregnant, or who plans to get pregnant within six months. The RAI is out of your system before six months is up, but rarely are we completely healthy again by then, and it is always wise to be healthy (if possible) before getting pregnant. Also, our doctors like a few menstrual cycles to pass before we get pregnant, to allow the more mature eggs (which could have received a dose of radiation) to be eliminated.

RAI takes weeks to work completely. Many people see this issue as a true drawback. But RAI has few side effect issues, and does not incur the risks associated with surgery. There is no known increase in thyroid cancers after RAI. In folks with significant thyroid eye disease, RAI may not be advisable, because in a small percentage of cases it has been shown (in one study at least) to temporarily increase the severity of the eye symptoms. It does not CAUSE the eye disease.

Surgery is often the choice of people who have significant eye disease, or who, for other medical reasons, have been advised against RAI. There is a risk of damage to the parathyroid glands which sit on the four ends of the thyroid "butterfly," and the nerve which operates the vocal chords apparently runs through the thyroid, and damage to it can damage your voice. In the hands of a well-qualified surgeon, these risks are minimal. Aside from that there are the general risks associated with general anesthesia and infection that arise with any surgery. But surgery removes thyroid tissue immediately, and the recovery process is typically a few weeks quicker than it is for RAI.

[cynthia]

#1064422

I had surgery on the monday and am sooo pleased some pain but other than that felt better the day after than the day before I was impatient and didn’t want to mess with RAI I knew from the begining that is what I wanted ….if you decide to go with surgery it is really a god send I have heard that RAI may have to be done more than once???? god bless and hope you come to your decision soon

[Bobbi]

#1064423

Both RAI and surgery had the same "failure" rate (i.e. need to repeat rate), the last time I checked. About 10% of the time the patient will remain hyper. That is due to the fact that sometimes not enough thyroid tissue is removed. With surgery "some" tissue remains to protect the parathyroids and the nerve the works the vocal chords. In thyroid cancer patients, this remaining tissue is removed via RAI, rather than surgically. With RAI, sometimes the calculations about how much of a dose is needed fails to remove enough thyroid tissue.

[snelsen]

#1064424

Hi pinkphone, just a quick note to say that there is a lot of conversation on the thread lch11 referred to, with her own experience, also mine. Generally, we have a choice between the two options. I had the surgery, am glad, would make the same decision again. If you read those conversations, it may help you in your thinking.

[pinkphone8]

#1064425

Thank you to all who replied. I tried to read through as much as I can but there is a lot of information and replies to go through. My endo wants me to make a decision soon. I had a consult with a nuclear med radiologist regarding RAI. He mentioned my thyroid could return to normal but if I got sick with a cold or whatever that I could become hyper again since graves is autoimmune. Has anyone had this happen? He said it was a possibility but I have not read any of that in my research. Just a little concerned since I am not tolerating the tapazole now that I do not wish to have to go back on at a later time. I feel pressured to make a decision by my endo but i know she is just trying to help since i cannot tolerate the meds. but it is a major decision that i will have to make soon.

[Harpy]

#1064426

Just a couple of points,
Firstly the fact that you are feeling pressured, indicates you are not ready to make a decision, your Endo needs to clearly explain to you what their reasoning is and back this up with some evidence, like indications that your liver function results are reduced or your white blood cell count is down because of meds
The symptoms you describe muscle weakness & joint pain aren’t attributed as side effects of Tapazole, or not that I found, it’s usually skin conditions like hives or flue like symptoms which indicate a white blood cell count issue.
If you are actually having a reaction to the Tapazole, you could also try switching to PTU to give you time to get things clear in your head before you make any decisions.
Muscle & Joint pain are symptoms of GD, so it may just be the course of the disease in your body.
What has been the course of your symptoms like anxiety, nausea, hunger, muscle pain, joint pain etc., some people get them all at once only get some and others get them in sequence, one after the another over an extended period.
There is also a possibility that your symptoms may be related to a different condition like rheumatoid arthritis which is an autoimmune condition that causes inflamation of the joints, you should consider this as well and discuss this with your Endo as well. The thing you should realise about GD is it’s cause lies deep inside your body and the thyroid response is just one of it’s many symptoms, correcting the thyroid response is only dealing with the hyperthyroid symptom, other symptoms will continue until the disease runs it’s course.
As a matter of interest you mentioned about being Hypo, did your levels actually go too low, what are your test results & ranges?, are you getting TSH, free T3, free T4 & TSI(antibldies) tested?

[Ski]

#1064427

I think the doctor may be referring to the fact that, as long as you retain your thyroid, any illness that requires your immune system to work harder will also have the effect of stimulating the Graves’ antibodies, which would amplify your symptoms for at least a brief period of time. There are some meds you can take to be more comfortable if that should happen, but if you can’t take ATDs, then you can’t correct the thyroid hormone imbalance, and that could be dangerous.

If you have surgery or RAI and no longer have a functioning thyroid, that could not happen. The antibodies may be stimulated, but they’d have nothing to affect.

If there is no way you can take ATDs, then you really only have the choice of RAI or surgery to return yourself to health. Make yourself a pro/con list to help you decide between the two ~ this can be an extremely emotional decision, especially when your levels are already out of whack, so first give yourself a break from thinking about all of this. Go take a walk and soak in some sunshine or look at something beautiful or watch something that makes you laugh. Then sit down and make your list. You may already have some idea, as you make the list, what your preference would be. Then sleep on it. I’ll bet by morning you’ve come to your decision.

[pinkphone8]

#1064428

Thanks for the advice. In response to Harpy regarding the joint pain it is actually a side effect of tapazole. It can cause myalgia pain which I did not have until I started the tapazole. The pain got worse when the my dose was increased and better when I had to stop it since I had become hypo due to too much tapazole. I am sure the muscle pain is from graves.

[gangstabear]

#1064429

I was wondering whether or not thyroidectomy would cause the TED to get worse? I have moderate TED and my Endo was quick to suggest RAI. I voiced my concern that it would exacerbate my TED but he said he would put me on steroids for a week to prevent that. I am so worried my TED will get worse and told him I would prefer to have a Thyroidectomy instead. I had bilateral lower lid blepheroplasty last spring but the soft tissue/puffiness returned. I have been on Tapazole now for 2 years and would like to have a baby in the near future.

Thanks!

[Kimberly]

#1064430

Hello – Thyroidectomy is not considered a risk factor for worsening of TED. However, keep in mind that each patient’s case is different, so there aren’t any *guarantees* that you won’t see a worsening of TED after surgery. (Shirley, one of our regular posters, can certainly confirm this).

As for RAI, the latest guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association is based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”).

For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable.

For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment and that steroid therapy should be “considered” for other patients in this category.

For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

[snelsen]

#1064431

Hi ganstabear, Ski’s suggestions are good, so making a list might be something you want to do.
If you have not read my posts on my happy experience with surgery, I suggest they might be helpful. As someone with TED, if I were making the decision, I would not do RAI, period, whether my symptoms were mild, moderate or server. Yes, you could be given prednisone, and it would improve TED symptoms while you are on it. But TED will run the course of TED, and when the prednisone is finished, the symptoms return. It’s kind of a temporary measure to protect your vision, and give some relief.
Finally, it sounds to me like you have made your decision, that you want a thyroidectomy. So, next step is to talk to enough people to find a surgeon who does them regularly, a good number is 50/year or more. Best wishes with your decisions.

And, if you have not read my posts and and lhc11’s post about having the surgery, I recommend reading them. You’ll get a lot of first hand patient information.
shirley

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