100% against surgery and RAI

[BetterSoonATL]

I was diagnosed with hyperthyroidism in Mar of 2009 after review by my endo for almost a year. (I had a baby in June of 2006, and I am almost positive I was hyperthyroid at the time due to the fact that I had morning sickness from the beginning up until the day I gave birth, I was put on bedrest for weight loss, had low amniotic fluid, my daughter was at rick of low birthweight, and I went into labor approx 3 time before actual labor.)

Anyhow, my question is related to treat for my hot nodule (doc described it at large) that is located on the left. I completed the thyroid uptake last week on Thursday. My doc prescribed Methimazole 2.5 mg/day. Which I was reluctant to take, but I did go ahead and start taking them on Sat bc the dose was small and I really do want to start feeling better mentally. I have seen two different endo since my first thyroid test. The doc that I saw last week seemed to be in a rush during my appt and also when she called me to give me the results of the thyroid uptake. So I do plan on making all future appts with my first endo.

I am really against having the RAI done, and that is pretty much non-negotiable. I think that I could manage having the surgery provided that I have ABSOLUTELY no other option. I am really concered about the posibility of becoming hypothyroid. I feel that this is worse than my current condition. I almost feel like I have to choose between two evils. I am aware that I should not stay on the medication for a long term amount of time.

My question is, at what point does a typical doctor treating a patient for this condition determine that a patient should no longer put off having the surgery? Also, is there any sort of posibility that there is not much harm in taking the methimazole for one year then staying off for some time frame and starting again? Also, in your opinion, what are the chances of becoming hypothyroid after surgery?

Thanks and sorry for the extended post, I really look foward to help on this.

[Mark Lupo, M.D.]

The standard of care for a toxic nodule is radioactive iodine or surgery.  In most cases of a single "hot" nodule, neither of these results in permanent hypothyroidism.  Surgery typically involves removing the entire lobe but there is one center in Tampa that does selective nodule removal for hot nodules with good success and very low rate of hypothyroidism.

I read the other post on this - PEI can "temporize" hyperactive nodules and the Italians have experience with this, but most often these patients need repeated PEI treatments.  

Long term, low dose MMI is a possible option, but requires close monitoring and has potential liver and immune system toxicity.

[DMW56]

I too, am hyperthyroid....since 1996, and have made the informed choice (I have a master's degree in nursing) not to have RAI OR surgery.  I have read the literature and research....endless amounts of it.  The recommendations for RAI and surgery have been the standard of care in this country for nearly 50yrs and the science, in the US, has essentially not moved along since then because no one wants to throw research money at something that takes 1,200 lives in the US anually.  There are bigger needs competing for the research dollar.

I am choosing to undergo PEI, or, percutaneous ethanol ablation.  It is something that has been used for 20 years in much of Europe, with success.  It has also been used for recurrent thyroid cancer, hepatocellular and adrenal cancer in the US.  The HUGE issue is finding someone here in the US to treat you with PEI.  I am fortunate to have found someone, on the West Coast, who is willing, with INFORMED CONSENT, to consider this treatment option for me.  I am, both as a consumer and a health care professional, ADAMANTLY opposed to informed consent only to the degree required to obtain compliance.  I know how to find the appropriate research and critically evaluate the research.  And, frankly, the recommendations for RAI and surgery are based on level IV and V research (with level I being the best/most stringent research....something difficult to acheive in medical research for a variety of reasons).  Unfortunately, until more consumers really inform themselves and demand more and better options, the science and therefore the recommendations for treatment for this disorder are not likely to evolve.

Take the time to inform yourself of the options.  Take the time to find someone who is willing tot discuss the options openly and without bias (there is a big ethnocentric bias on the part of many health care providers, believing that if the research wasn't done in the US that it is therefore meaningless) and make a TRULY informed choice about how you proceed.