[nann]

#1059134

Hello,

I am one of the many who is faced with this decision and, initially, I was all for surgery, then I had one doctor that told me some horror story about how someone had their parathyroid ‘nicked’ and are now dealing with leveling out their calcium levels. However she never heard of anyone having issues with the RAI. Today I had my endocrinologist follow up since being prescribed the tapazole and the inderal who explained to me that with the RAI that it usually takes only one treatment but could take more, that it can increase the chances of eye bulge and pain (my eyes swell in the morning but take about an hour or so to go down and is followed by a dull ache). If that were to happen then they could give me large doses of cortisol….this is the first I’ve heard of this….which comes with its own set of side effects such as mood swings, insomnia, high blood pressure, I could develop diabetes, and it could destroy my hip joints! If you insert a bunch of expletives here you could figure out what kind of mood that put me in when I was told that. I mean, really? When does it end? To me, it seems that every doctor that I speak to is pushing the RAI in spite of the ‘low percentage’ of any of the above happening…that’s if the first treatment works. In addition to potential issues – it means 3 days away from my 10 month old (or more if I require more than one treatment) as opposed to one night in the hospital with the surgery. So, I guess I would have to know – does anyone know how severe or difficult it is to look after your calcium levels if that were to happen? Or have you even heard of that happening? I am sure that this kind of post has been here several times and so I apologize if it’s redundant – but thank you for any advice.

Take care y’all!
Nann

[snelsen]

#1172437

hi, too tired to write tonight. i chose surgery. alexis, adenure on the post, has a small baby and is having surgery soon. Check out posts by lhc11 or lch 11 i can never remember for sure.
Surgery is faster. some docs do not recommend it cause they are not familiar with it, or were trained to think RAI first. You do have a choice, people chose each for their own reasons; I loved me choice, all went well, there are risks, though small, with all of this.
Sorry, so tired I am done writing tonight, but wanted you to have a response!!!
Shirley

[Bobbi]

#1172438

Our doctors weigh the known possibility of side effects and try to evaluate which they think is safEST for the patient. Because it involves a judgment call, different doctors will inevitably see things differently.

In the hands of a well-qualified thyroid surgeon — a surgeon who does LOTS of thyroidectomies a year — the procedure is relatively safe. There is always a chance of infection. And there is always the possibility that the parathyroids can be damaged or that the nerve working the vocal cords can be damaged. Those are real, known possibilities. But the more experienced the surgeon, the smaller percentage of patients that experience those problems.

RAI creates a different set of issues. From our doctors’ standpoint it eliminates the possibility of infection, or of damage to vocal cords or parathyroids. And that is why many of our doctors prefer it. It does not cause the eye disease. But if the eye disease is already present and visible, it has been shown to aggravate the eye symptoms — temporarily — in about 16% of patients (according to one study). To counteract that possibility, our doctors will prescribe a course of treatment with something like prednisone for a few weeks/months. This course of treatment has been shown to prevent that temporary worsening. But, as you point out, that has consequences as well. And since surgery has not been shown to affect the condition of the eyes, some doctors then agree that surgery might be a safer option.

Again. It all depends upon how the doctor evaluates the risks for the patient. I don’t think the variability has to do with lack of familiarity. I think the variability has to do with different doctor’s looking at different risks in different ways. Or with them having seen some of the adverse consequences in their own patients. I know one endo who is VERY slow to prescribe the antithyroid drugs long-term because one of his patients had an extreme adverse reaction (very rare agranulocytosis).

One thing to keep in mind: because of law suits, our doctors now err on the side of going over every little thing that can possibly go wrong. It’s called “informed consent.” Prior to a major surgery a few years ago, I had to sign a piece of paper that included horrible side effect issues, including death. It is extremely unsettling. Every possible thing that has EVER gone wrong in one of these treatments will be laid out for us. Try to keep in mind that all of our treatment options are safer than remaining hyperthyroid.

[Kimberly]

#1172439

Hello – I posted some info on RAI and eye involvement a few weeks agoin this thread:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42338/

The risk of complications with surgery runs around 1-2% in the hands of an experienced surgeon. For patients who do end up with parathyroid damage, my understanding is that the treatment for that is life-long calcium supplementation. However, I don’t know if this is just a “take a pill once a day” type of process, or if it’s more complicated to find the right balance. This group might be able to give you some additional info: https://www.hypopara.org/index.html

There is a third treatment option, which is anti-thyroid drugs. ATDs also come with risks and benefits, but is there a reason that this option is off the table for you?

Take care!

[snelsen]

#1172440

Regarding pros and cons of the three choices.
I think it is best, when considering them, to try to find as much information as you can about all options. Everyone agrees on that idea.
But getting the information is challenging sometimes.

I do stand my my statement that sometimes endos include in their recommendations for treatment, the option that they are most familiar with, and discourage another option. Geography and training can make a difference. It’s easy to find out. Just ask your endo.

Other, unrelated examples are in the literature.
Examples are abound in the prevalance of mastectomies vs. lumpectomies in breast cancer. Also the number of hysterectomies performed varies widely in geographic regions. And the number of laparoscopic procedures vs. open procedures. Depends on their training, some depends on the medical culture of the area, or can depend on the services they have available, and the equipment they have in their hospital.

But what we really care about is ourselves, and our situations and our available options. Sometimes it is because they are looking at our health picture, and suggesting what they consider best for us, as an individual.
One person with Graves’ may have a cardiac history that discourages surgery unless absolutely necessary. Another person may have had a boatload of radiation over their lifetime, or been told they have had their lifetime radiation dose, so RAI is not desired, either by the endo or the patient. There certainly are situations where one treatment is preferable over the others, even if it conflicts with what we think we wanted.

Sometimes, they are more familiar with the referral docs they usually use. I would encourage anyone who is trying to make this decision, to state their own preferences, if they have them, for the treatment they want. Ask a lot of questions.
Another thought is the best sources for information about RAI and surgery, are the nuclear med department and docs, and the surgeons themselves.
They are the best resources, for that is what they “do.”
If another option has been suggested that you do not want, be sure to tell them that.
I suggest we ask them why they suggest only one treatment over the other two choices. There may be a very good medical reason for it, and there may not. Generally, the three options of RAI, surgery or ATD’s do depend on the combination of what we want, what the endo recommends and why, the area where we live, which country, and if we have access to a major medical center.
I am not citing the NIH and medline references for the following in this post, but they exist and I can pull them up again.

Regarding calcium:

1. In almost all cases, if calcium levels are low, and it is rare, after a thyroidectomy, we take calcium for a few days, have labs again, and usually the problem is resolved.
2. With RAI- It occurs, though rarely, that the same parathyroid situation and the need for supplemental calcium happens due to low calcium levels.

3. It is also true that a very small % have other involvements with vocal chords, usually a hoarse voice for a week or so, and/or it is also possible that there would be a need to take calcium forever due to a complication of the surgery. And it is a complication. It is extremely rare, but has happened. Then we would need to take two meds over our lifetime, thyroid hormone and calcium.

Bobbi is so right about the lists of side effects that are stated for almost anything involved with medical procedures. They list everything.
When I had my orbital decompression, the op permit, said, among many, many other risks,
“too much surgery, too little surgery, need for more surgery, blindness, numbness, decreased vision, double vision and death.”
It kinda makes you want to walk right out the door! But we need them, too.

As the facilitators have emphasized many times, and in this thread, that if we choose surgery, we should have a surgeon who does many, at least 50, thyroidectomies a year. Since both Graves’ and other thyroid conditions needing thyroid surgery are relatively uncommon, these surgeons usually draw from a larger population base.

Shirley

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