[Bobbi]

#1074487

The type of logic that you ascribe to the surgeon could just as easily be turned back on him: he wants to operate to keep himself in business….. I don’t, however, think that good doctors try to keep people sick so that they have job security, neither do I believe that good surgeons suggest surgery to give themselves an income.

If you have a cold nodule, the odds of it being cancerous (or ever being cancerous) are slim. But, if it is going to cause you to fret, obviously you might need to surgically remove it PROVIDED that your thyroid is controlled enough to make surgery reasonably safe. If your endocrinologist has recommended against surgery, I suggest you get a second opinion from another endocrinologist. (Nobody online is qualified to recommend treatment to you.)

[Ski]

#1074488

Typically patients complain that the endo pushes them into RAI, so I’m not sure your friend’s logic holds up, nrssully ~ still, as Nancy mentioned at our conference, surgeons tend to recommend surgery, and radiologists tend to recommend RAI. We have to be responsible for sifting the facts and figuring out what works for us.

If you were just diagnosed in July, believe it or not, you are extremely early on in your treatment. If the Tapazole is working for you (maintaining a normal thyroid hormone level) at this low dose, you may want to just stick with that for now. It’s a perfectly valid option.

A Graves’ Disease diagnosis means the endo will be treating you lifelong, whether you choose surgery, RAI or ATDs. Surgery can lead to a quicker resolution, but sometimes doesn’t. Finding and maintaining normal levels can take a while no matter what treatment you choose, and thyroid hormone needs change throughout our lives, for many reasons. We’ll still need our endo no matter what. And just one more comment ~ I have never met an endocrinologist who had to "fight" to keep patients coming. They are coming in droves, overwhelming every endocrinologist’s office I have ever been associated with. Job security is already in the bag. Autoimmune diseases are more common every day.

One thing that I wonder about ~ has your nodule been evaluated? Bobbi’s right about a cold nodule, but if you have a "hot" nodule, it could be causing all of your hyperthyroid symptoms, and RAI ablation would actually do the reverse of what you say ~ a "hot" nodule sucks up ALL the iodine and pumps out TONS of thyroid hormone, so RAI can destroy the nodule and leave the rest of the thyroid tissue alone, since when a nodule is responsible for the hyperthyroidism, typically the rest of the thyroid "goes to sleep" because the nodule makes the patient hyperthyroid, and the TSH feedback tells the thyroid to stop producing. Nodules are not typical in a Graves’ patient, though they are a possible cause of hyperthyroidism. You may want to clarify that point with your doctor.

[TaraPetit]

#1074489

This is a point that I want to clarify because so many people don’t get it, Hyperthyroidism is one of the things you get with Graves. Just because you get rid of the hyperthyroidism, doesn’t mean you get rid of Graves Disease. Graves Disease is a whole lot more than hyperthyroidism.

Right?

TP

[nrssully]

#1074490

Thank you Bobbi and Ski for your replies.
I am confident that my endocrinologist has counselled me well. She has left it up to me to make the final decision since we have 3 options so to speak. I am actually making the choice to have the surgery on my own. I was going to take the ATD for a year or so and see how well that stabilizes me. I read a few books by Mary Shomon and thought I could never do RAI. I think to each is own since there is really no cure to the Graves only the hyperthyroidism. I will just let God lead me and pray that I am a good advocate for myself. I just hope they dont have a cure for this autoimmune disease a few years down the road when my gland is long gone. LOL Has anyone had a total thyroidectomy? And do you regret it?

[nrssully]

#1019842

This is the low down… I was dx. with Graves in July 08. I have been on Tapazole since. My endo has been checking my levels every 2 mos. The meds have been decreased after ea. lab. I am on 5mg a day now. I think I may have been without symptoms for about a total of 1 month since July of 2008. I can ditto many of the comments written on this message board.

I have a nodule on my left lobe and have decided against ablation therapy because that would just take care of the thyroid but leave the nodule. I truly believe in prevention so think that having a total thyroidectomy is the way to go so as not to worry about the nodule becoming cancerous on down the road.

After a conversation with my good friend who happens to be a surgeon, he said definetely take it out. He said the practice of endocrinology is to keep the patient coming back (job security). If you take the thyroid out then the endo. dosnt have much else to do for you once you stabilize on thyroid replacement therapy. He stated that with the thyroid being taken out it accomplishes 2 things … eliminates the hyperthyroid (Graves) plus removes the nodule that could one day become cancerous. Does anyone have any comments on this information. My appt. with the surgeon is on Jan 19th.

[Bobbi]

#1074491

If you think about it, nrssully, what is making you feel so unwell is the hyperthyroidism. So being about to cure that is HUGE, no matter how you "cure" it. Also, I believe it is only about 1% of the GRAVES population that gets either severe eye disease or pretibial myxedema (which seems to go hand-in-hand with serious eye disease) — so I hope you don’t fret for long about the other, remote possibilities.

And I hope your treatment works soon to make you feel well again.

[nrssully]

#1074492

Thanks Bobbi!! I cant wait to feel better. I just hope I am not exchanging hyper for hypo atleast not for too long anyway. This whole process has definetely rattled me. I sometimes feel like a big complainer. After reading so many of the posts I dont feel so crazy. It is very supportive to be able to reach out to people who can seriously empathize. Thanks

[russell]

#1074493

I’ve had Graves for about 15 years, have managed it fairly well with tapazole, but am sorely tempted to get a thyroidectomy anyway. I do TSH blood tests with my MD’s permission about every 6-8 weeks to stay on top of this, and am generally using only about 2-5mg of tapazole/day — almost nothing — and I’ve got TSH dialed in between about 0.6 and 2.0 depending on the month.

But despite that, my weight tends to plunge quite easily when levels aren’t perfect — say when TSH is below around 1.5. I’m 5’10” and vary from 140 to 156 which seems dependent on where my TSH is. Plus in the past year, I’ve developed colitis which I think is due to the fact that my stress/anxiety levels increase when my TSH falls — my body just seems more tense overall and it affects my gut, back, facial mannerisms, etc. It also affects my sleep, even at TSH of 0.6.

So the question is whether its worth doing the thyroidectomy and then taking synthroid for life to address these issues given that I’ve managed to keep TSH within the clinically normal range. I’m leaning towards doing it because I think may help my long-term physical and emotional health (not to mention that I probably wouldn’t need so many blood tests!) Thoughts by any of you would be appreciated!

[Ski]

#1074494

Hi russell,

This is a good topic of discussion for you & your endo to take some time with. You aren’t taking much tapazole, as you say, and you’ve pretty much dialed in to the normal range. Still, the anxiety and physical symptoms that you continue to experience are a consideration. I suppose I’m not saying anything new here ~ it’s not my decision, so I am hesitant to say "I would ______," whatever that is. I would probably do what I already did, just because I already did it, and it worked for me. And probably, so will everyone here.

Unfortunately, there’s no crystal ball and you can’t see your comparable futures based on whatever choice you make today.

I will say this. It is possible that antibody levels in your body are not truly well managed with tapazole ~ you are always in the normal range, but for your body to truly rest, it should be at ONE normal point that is steady and works for you. That may be easier to find without the complication of antibody action.

Naturally, your hesitation is that now you have choices, and if you make one of the other two choices, all your choices are gone. I understand that. Perhaps you should do a pro/con list (my sister swears by them!), so then you can see clearly, right in front of you, if your feelings are clearly falling on one side or the other.

Let us know how it’s going with you!

[DianneW]

#1074495

This reply is in response to Russell, wanting feedback on whether you might be better off having a thyroidectomy rather than remaining on a small amount of tapazole for long-term control of hyperthyroidism.

You said you are taking from 2-5 mg of tapazole and your TSH is fluctuating between 2.0 and 0.6, which is really not a huge change, so I am not sure how you’d do much better. I don’t know for what reason you change your tapazole dose, but if you’ve been changing the dose on your own based on how you feel, that could be a factor in how you’re doing. How we feel may be, but isn’t always a reliable indicator of thyroid status. What does your doctor have to say about this?

Mainly I want to caution you that if you choose to remove your thyroid, the reasoning that it will make your thyroid levels more stable may not be sound. I am on replacement hormone following RAI and have had readings more different than yours within the space of a week. I don’t know if the reason has to do with time of day, antibody levels, or what; but my TSH readings aren’t entirely consistent. You will probably find that yours won’t be either, regardless of treatment choice.

You might want to explore with your doctor whether the colitis or some other condition is a factor in your weight loss. We get used to thinking our thyroid condition is responsible for everything, and it’s easy to miss other conditions we should be paying attention to.

One possible way to test whether your anxiety and weight loss are truly caused by your levels dropping too low part of the time might be to ask your doctor to try you on block and replace therapy, to stabilize you at a higher level. This would mean giving you a much higher dose of Tapazole to shut down your production completely, and then putting you on thyroid replacement hormone to bring your levels back to normal. The only disadvantage to this is that you’re more likely to have side effects to Tapazole at the higher doses. However, if you felt better that way, it might indicate that you might be happier making a definitive choice. Some doctors like to use it because it’s easier to keep thyroid levels stable, so it might be helpful in your case.

Doing that is the closest thing I know to having that "crystal ball" Ski referred to. If you’re interested and your doctor isn’t familiar with this as a valid treatment, let me know and I can send you something that will help.

[russell]

#1074496

Diane, thanks so much for your informative and helpful reply!

Trying to stabilize at a higher levels makes a lot of sense, and I could get to those levels easily with tapazole (still at modest doses — probably only 5 mg/day). The problem is the intensive monitoring and dose adjustments it requires to stay there, which is the main problem I face today shooting for ANY TSH target.

My GP is very accommodating and lets me do TSH tests once a month, maybe even more frequently if I asked. But its a pain to do that all the time. So my real question is whether with total thyroidectomy (not RAI), levels can be more easily stabilized with replacement therapy than with constant tapazole adjustments.

And other than the obvious but manageable surgical risks, I’m wondering if there are other long-term concerns to TTD that may cause more problems than I have now. From the other posts, it sounds like a dream cure!

Btw, I read a noted medical journal study recently that might explain a lot of TSH testing variance for you and others. It says that TSH tests over-read by 25% after eating, but that most MDs are unaware of that. A true test should be done, like a cholesterol screen, prior to eating.

thanks again!

Russell

[Ski]

#1074497

That’s interesting Russell, thank you! My former endo used to make a point of asking me to have my levels tested at the same time of day each time, under the same circumstances (meaning either not having eaten for a period of time OR right after eating), just so we could be sure we were comparing apples to apples. I had completely forgotten about that, since now I do it by habit.

I haven’t heard of any widespread issues with thyroidectomy patients having difficulties managing their levels, but again, everyone with Graves’ is a unique case, so it’s hard to predict.

[russell]

#1074498

Ski — I missed your reply until just now, but I much appreciate the advice from both of you (btw, I noticed you and I are both Bay Area folks).

I’m not up to speed on the antibody stuff. Could you refer me to something that will help me understand this?

As for block and replace, this is a great idea but I can probably easily target higher TSH using tapazole that will get me to the same place TSH-wise. The problem is stabilizing at those levels. Once I’m dialed into a stable TSH of 1.5 to 2.5 without that annoying bimonthly testing and dose adjustments, I’m pretty sure I’ll be in good shape with all the symptoms (and maybe my hair will even thicken up again!). So that’s the goal and thyroidectomy with a reputable surgeon seems like a smart way to do this based on what I’m hearing.

Best —

Russell

[Bobbi]

#1074499

Hi, Russell:

The rationale for using block and replace twelve years ago (when I was first diagnosed) was based on a Japanese study that showed huge improvement in remission rates. Despite the efforts of scientists to duplicate the results of that study in other countries, they were not able to do so at the time I was going through things. So the treatment tactic was not universally accepted by doctors. It is still used in pediatric cases of Graves, I know, and it has proponents in other places as well. The idea is to totally suppress thyroid function by using the ATD, and then replace it with replacement hormone. So, my question: if you are totally suppressing thyroid hormone production and replacing it with replacement hormone, why are you doing it? With what purpose? Significant numbers of patients with remission was the point — at least ten to twelve years ago — but that proved not to be true. In your case you want consistency. And I can see why blocking thyroid production might do that for you, but could not the same thing be achieved by removing the thyroid without running the risk of high doses of a drug? If you are blocking thyroid hormone production, you do not have normal thyroid function, normal thyroid hormones being produced. For me, I don’t get it. Obviously, a topic for your doctor.

A second line of discussion with your doctor would be the frequency of your blood tests. My own endo, who is very good, allows her patients to have blood tests whenever they want, but cautions us strongly against too frequent tests stating that the results were less likely to produce consistency of replacement hormone doses. (Obviously, a difference between you and I — but it might still have the same effect, which is why I suggest you talk with the doctor.) The reasoning was this: that since TSH moves more slowly than actual thyroid hormone levels, you would "catch" the TSH before it had totally adjusted to a new dose of replacement hormone. So, if you raised the dose at that point, then you would be over-dosing and the next time you took a blood test, you would find the levels too high. And you would have to lower your dose. ETc. In other words, a hormonal yo-yo, much like you are describing now. My endo recommends six weeks to three months between blood tests. Six weeks is the minimum if something seems "off." AT first, I was unwilling to wait through symptoms that I found problematic. But I learned — the hard way, of course — that doing things too quickly did not produce optimal results (i.e. I went very hyperthyroid again).

Third: there is the issue of outliers and whether or not we base our treatment decisions on their experiences. Outliers are people for whom standard treatments do not work well. They are not the norm. Every single medical treatment has outliers. I was petrified of having gall bladder surgery because of a well-reported case of a famous person dying as a result of the surgery (pulmonary embolism). Yes, embolisms can occur after surgery; no, they do not happen all the time. So, how do you base your decision? Nobody wants to be the person who dies or has less than optimal results from a treatment. I know many people who have had their thyroids removed, and they do not have issues with replacement hormone once the initial phase of regulating the dose is over.

I think our doctors are the best resource for telling us what their experiences have been with respect to various treatments. Second opinions give us a broader range of insight into what to expect. They cannot tell us what "will" happen, but they certainly can tell us whether something is likely to happen or not. And because your doctor has worked with you for many, many years, he/she is going to have the best "guess" as to whether or not any specific treatment is likely to give you the results you seek.

[DianneW]

#1074500

Russell, my TSH tests are taken fasting, and I take my replacement hormone consistently separated from food and other meds, so there should be nothing I’m doing to cause fluctuations. It could be that my TBII antibodies (which were still strongly positive when last tested) are fluctuating, and causing the difference.

I do think the block and replace would be worth a try if you want to find out whether having stable levels is going to be the answer to how you’re feeling. That would put you in a better position to decide whether you want to be on replacement hormone as a permanent solution, following either surgery or RAI. Once your own thyroid production was totally shut down with a higher dose of Tapazole, you’d be dependent on thyroid replacement, just as you would with your thyroid removed.

If you already have your mind made up that you’re ready to do surgery and are looking for support, I can assure you that I’ve talked to many people who’ve had that done with a wonderful outcome and who are really happy with that choice. I haven’t met anyone yet who had a serious complication, though I’m sure they’re out there. I’ve known several who had thyroid tissue grow back a few years down the road, and who then needed another treatment. That’s not the usual outcome, but you should know that it can happen. Talk to your surgeon about the frequency if you’re concerned, since I don’t know the percentages.

After fifteen years on antithyroid drug therapy, the likelihood of a remission no longer seems to be a realistic goal of staying with that treatment, so it seems that if management is ruling your life and still isn’t bringing you the kind of health you desire, making another choice isn’t a bad risk at this point. At least that’s what I see about your situation, in case it helps.

Best wishes,

[Author]

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