[WWWI2]

#1060484

I’m out of remission and can’t tolerate MMI. I’m really scared to have RAI.

I am not sure I meet any criteria to have surgery but do not want RAI. Were you given the option of surgery? If not would you have preferred that?

How can a person make the decision to do any of this when their heart is pounding and they are in a constant panic because of the disease itself?

How do you convince your doctor to allow you the surgical option?

Thanks.

WWWI

[Kimberly]

#1182892

Hello – Hopefully, others will chime in, but a good place to start would be bringing the ATA/AACE guidance on the treatment of hyperthyroidism to your doctor. (You can find a link in the “Treatment Options” thread in the announcements section of the forum). The guidance states that:

“Once the diagnosis has been made, the treating physician and patient should discuss each of the treatment options, including the logistics, benefits, expected speed of recovery, drawbacks, potential side effects, and cost.
This sets the stage for the physician to make recommendations based on best clinical judgment and allows the final decision to incorporate the personal values and preferences ofthe patient.”

Another issue to consider would be whether there is a “high volume” thyroid surgeon where you live who is familiar with Graves’ disease – or if not, whether you would be willing to travel to find an experienced surgeon.

I find that a good old-fashioned handwritten “pro” and “con” list is helpful when the mind is swirling and it’s difficult to think straight! Wishing you all the best as you make this decision.

[WWWI2]

#1182893

Thanks Kimberly!

[AzGravesGuy]

#1182894

I have had both and without hesitation I would recommend the TT.

My RAI left me waiting and wondering. I felt better the moment I woke up from surgery.

Everyone has a different experience and both treatments have fans, but if you want the madness to stop sooner than later, nothing is faster than surgery.

[WWWI2]

#1182895

AzGravesGuy –

Thank you so much for responding. I have been following your journey. Your words hold a lot of weight for me. I have notice since yourTT you have gotten very quiet. I took that as a very good sign that things have begun to settle for you. In fact I was going to post on your thread this very morning asking for an update. So your timing is impeccible. In the back of my mind I keep thinking about your “exhale” comment and while I’m not there yet, I really get what that must have been like.

I was diagnosed in 2012 and they had me on antithyroids up until last summer and my numbers have been sinking since. I did not do well on ATDs nor did I do well without and have felt poorly the entire time except for perhaps the two months following the ATDs when my TSH was 1.2. So my thyroids days appear to be numbered and I’m pretty ready to get this over with since there doesn’t appear to be an alternative.

The idea of getting RAI and having to wait and wonder, risk having to dose twice or ultimately having to do surgery anyway, along with a whole host of other reasons puts me into the camp of wanting surgery from the start.

The challenge will be to get my doc on board. The thing that makes me crazy is that I don’t really want either or to have to go through this at all, add to that the fear and anxiety that graves produces and it causes me much distress the idea that I have to beg/argue/fight to have a surgery I am terrified to have. This Graves is NOT as much fun as they promised.

Graves rant #2,874 finished now.

I made this into a book and didn’t mean too. I’m just really appreciative that you responded and hope things are going well for you. What med have you decided to take? Are you T4 only or no? How are the meds working out for you?

WWWI

[gatorgirly]

#1182896

I initially wanted surgery as well, but being that I was 26, no surgeon felt comfortable operating on someone so young and otherwise healthy, given all the risks that surgery came with: vocal cord damage, parathyroid damage, keloid scarring (I get these, not everyone does), and all the obvious but rare risks that any surgery carries. I listened to their concerns and suggestions, and combined with the two vastly different recovery processes, chose RAI which was right for me at the time. For me, RAI was easy and uneventful, though it took my stubborn thyroid six months to die. I was VERY hyperthyroid even on ATDs, so no one expected the RAI to work instantly.

Not sure which doctor you’re suggesting you need to convince, but if the surgeon you’re talking to is adamant against surgery, then he is either not the right surgeon for you or maybe you are not considering his valid concerns for not wanting to operate.

You said you can’t tolerate MMI – what about PTU? I took that with no issues, aside from the fact I needed enormous doses but that’s because my levels were off the charts, which would’ve been the same with MMI.

Whatever you choose, the end result will be so much better than how you feel right now. They are just two different ways of getting there.

[WWWI2]

#1182897

Hi Gatorgirly

The doc I have to convince is my endo. I may be anticipating more problems then there will be but she and I have not seen eye to eye much during most of this, which is why I’m working on getting endo #4. My hope is that once all is said and done, I won’t need an endo. They seem to cause more distress for me then help resolve it.

I haven’t tried PTU, but may shortly. With MMI the main problems were severe joint pain and mood problems. I’ve heard that PTU may resolve the joint pain, but both MMI and PTU are CNS stimulants and I think that’s why I have such problems with MMI so am not sure that will be much different on PTU. But I would like to give it a try. However, I’m preparing for the possibility of thyroid termination as that seems to be what’s next.

I understand the risks of surgery and after having not gotten any real relief for the past two years, the idea of more waiting for my thyroid to die on it’s own time and having to deal with the ups and downs until it decides to die would make me scream. Plus, there is the cancer risk with RAI. And while the risk is small, like those with surgery, I-131 is a carcinegen. I already have a predisposition to breast cancer as my great grandmother, grand mother, mother and two aunts had cancer and I don’t need to increase the risk any more for any kind of cancer.

Not sure what you meant by “I get these, not everyone does”. Are you convinced you would have gotten those had you had surgery?

I really hope the end result will be better as you suggest, because this is miserable now.

WWWI

[gatorgirly]

#1182898

Yes, I get keloid scars with any major incisions, therefore I would almost certainly have had one on my neck from a thyroidectomy.

[popscene01]

#1182899

I always thought both were personal choices. My endo went back & forth between the 2 but we ultimately decided on the surgery because I was having trouble responding to the medications and they said the recovery with RAI would take longer. (Though the TT actually took me 7mo recovery before I could go back to work.)

I had an AMAZING surgeon, no keloid scar at all (I have them from other surgeries) but still a slight scar after a year that I seem to only notice and others don’t really notice unless I point it out to them. (If you want to come to Buffalo, NY I can recommend him!) If you have the surgery done well and don’t pick at the scabbing you shouldn’t get one.

Regardless of if I would have had RAI or TT the battle was the aftermath, getting my hormones in check and getting the right dose of meds to make me feel better. I can say though, after the TT I never had a panic attack until I got way too anxious going back to work. But my anxiety is SO much better! I AM on 5mg of Lexapro now but that’s even less than a normal starter dose and I only started that after I went back to work so next doc appointment I’m going to see about getting off of it.

I don’t know how you can convince your doctor. They can’t force you to do the RAI. Since ENTs do the surgery maybe it would be best to consult with one of them. See if they have before/after pics (or patient testimonials) of their surgeries & necks also!

Good luck!!
Amanda

[joansnance]

#1182900

Hello, I’m a newby on this enlightening forum but definitiely an oldie when it comes to Graves’ Disease issues. I went the RAI route about 1992. My endo didn’t mention any other options at that time. I was scared to death because I had always been told from childhood that I was allergic to iodine. I was hospitalized for the treatment because of allergy issues. I had no problems! I have no recall of any long waiting period to feel better and get my thyroid hormone level straightened out. If I have any problems associated with RAI, I don’t know about them yet. In all these years, I have only had to adjust my synthroid dosage 3 or 4 times.

Good wishes on choosing the option that is best for you.

Joan

[snelsen]

#1182901

To WWW12
It’s entirely up to you to decide what you want, unless there is a huge compelling medical reason guiding you one way or the other.
I don’t understand why your endo is so adamant. Maybe that is his/her comfort level. But they don’t do either RAI or TT. It is your thyroid, not theirs!!!

I had a sub total Thyroidectomy. They left a bit of thyroid gland, so no need for Sythroid for many years. Now I take it. . SO happy with it. That was done at the time, now they to a TT. I’d have no interest at all in RAI. I would not have had one. My surgery was so long ago, RAI was just a baby at that time, nobody knew much about it.

Sometimes, endos take a residency in internal medicine, but there might not have been surgeons who did TT’s. It’s my opinion that you should be presented with three options, you decide. Don’t do something because you feel a “should,” or an “ought.” You own the decision.
Shirley

Kimberly’s thoughts are very helpful to you, I think.
Shirley

[Raspberry]

#1182902

Good luck to you WWW! I don’t care for this Graves’ Experience either…. Ultimately it is your decision and if your endo won’t honor it, then find a doctor who will. You are the one who has to live with the results not your endo. I know it’s easy to say that but a hell of a lot for you to deal with while feeling bad and scared. You mentioned joint pain with methimazole, did you rule out being hypo as the reason why? For me joint pain means my Free T’s are too low every time and reducing the methimazole fixes it. Still I can’t blame you for wanting to get off the medication adjustment merry-go-round, I can’t say I’m having fun myself.

[beach45]

#1182903

WWW12 I had RAI and it was okay as I was scared initially; MMI was not working for me after almost 2 years of using it and my endocrinologist(s) were saying it was not good for my heart to be up and down so much on dosage; yet I was fortunate when I asked about TT he said whatever you decided also being he had a TT himself a few years prior; I even went on my own per another doctor’s recommendation to a very good surgeon in my town who had an excellent reputation for doing TTs and it all sounded good yet in the end I opted for RAI; I have friends online in other places and here in my town who did the TT option and did well; yet in my opinion if your doctor won’t give you that option and you want to go that route, you may want to consider seeing a different endocrinologist if possible; I had total of four; most of them were on the same page except one who was pushing just the RAI. My aftermath, not so great 2+ years post RAI yet not miserable either; I definitely feel in time I am going to get balanced out yet just not there yet; looking back what I went through with the Graves symptoms starting in 2010 and being on MMI it was pretty stressful and I’m a lot calmer now the first time in years as I had been considered “slightly hyperthyroid” at least 20 years prior to Graves going out of control as I had no clue back then what that meant! It is all a very personal decision yet I have heard of many successes with both TT or RAI; I do know too two of my endocrinologists told me that in recent years they use enough millicuries to totally destroy the thyroid gland like up to 30 mCi; and years ago they used less than 10 mCi which in some cases did not totally destroy the gland; I had 15 mCi and my gland is destroyed; I only am going by what my doctors told me as I wanted less than 15 yet my last endo said that might not do the job properly; I was so scared and now I look back and ask why was I so scared; I do think I’m slowly getting there and think with some more tweaking with the type of thyroid hormone and dosages I am going to get there hopefully in the next few months; there are so many who did well with either RAI or TT for Graves and are not on support groups. I also hear you as I had that pounding heart and panic too and it is scary and I had difficulty thinking straight at times as I just wanted it all to end; my endocrinologist was very honest saying you are trading one problem for another as it depends on the person how you look at that comment as I will be truthful my post journey has not been a picnic thus far yet that pounding heart and the panic attacks, etc., I definitely do not want to go back to that and glad that is over with for me; I’m amazed sometimes at how calm I am!…and whatever decision you make from what I hear from any others here and other places they are happy they made some decision and got their life back. It will be okay as I never thought myself (I’m now 55) would get through this thus far and then going through the change of life too at the same time; My one endocrinologist said I have a double whammy (she moved out of state 2011 as I loved her!) Best of luck and lots of good input here and please keep us posted!

[Author]

Posts