[Bobbi]

#1074802

I would suggest that you get a second opinion about being kept hyperthyroid to reduce eye symptoms. It sounds risky, to me. But another doctor would give you a better evaluation of the treatment.

[Val]

#1019884

I had my thyroid removed very soon after my diagnosis. Have had orbital decompression and 1 muscle surgery. So far very happy with every choice I made. very happy with my results. My dr. keeps me a little hyperthyroid to keep my eye symptoms suppressed. He admits it is "anecdotal" but has seen in his practice that when the TSH levels are kept low or 0 eye symptoms are less severe. wondering tho if any other endocrinologist have used this on any of you.
Val

[Val]

#1074803

Hi Bobbi,
I appreciate your concern-I think what we know about Graves treatment in alot of cases is old school-improving treatments is the name of the game. My own PC was shocked by my treatment-that only means she has never heard of it before-I have family in the medical field and they are hooked up with cutting edge Drs. My eye surgeon taught the Fellows in Rochester Minn. I am so thankful I found him. I talked to a couple surgeons before I found him. They all have a different order in which the bone, muscle and lids are done. But only one made sense to me. But if you only heard of one way then you can’t go to your DR. and say ‘what about this’. I think this forum is great because we can all share. But what do we share?? I think we should share everything. Then people can go to their Dr. and ask for them to look and see if it might be something that can be used more widely. I have talked to four Drs. who were either unphased or impressed with my treatment. There is a little research to support low tsh to reduce eye syptoms. Being a little hyperthyroid for a few years is not too risky when you weigh it against the results. If it keeps my eye symptoms at bay it is worth it. Part of my passion is to always be super pro active in my health. And I would tell everyone to question question question. Ask, IS this the most advanced treatment being used-if they don’t know the answer to that then ask someone else.
This site is doing a great job providing comfort and info to people-
Val

[Bobbi]

#1074804

Anecdotal (the term your doctor used to describe the basis for his/her decision to keep you hyperthyroid to protect your eyes) means that there are no studies to confirm the judgment. Anecdotal reports kept women on estrogen replacement for decades, because doctors "thought" that it protected the heart and the bones after menopause. In their practices, they "thought" that they were helping prevent heart disease, in addition to minimizing the symptoms of menopause. I, along with tens of thousands of other women, went onto estrogen replacement only to find out — due to an actual study done over many long years — that almost NONE of the things that doctors anecdotally thought were true actually were true (it did not protect the heart — it did protect the bones), and that there were serious side effect issues (like increased cancers). The anecdotal reasoning was proven to be dead wrong. But many doctors thought it.

In the case of hyperthyroidism, it is a proven fact that while we are hyperthyroid we lose bone. The cells that munch bone work harder than the cells that make bone causing a cumulative loss. Osteoporosis is a likely result. And osteoporosis can be disabling. There is a significant increase in the risk of hip fracture later on in life, for women who have been hyperthyroid, even though they received adequate treatment.

When we are hyperthyroid, the heart is over-stimulated — in however minor a fashion. Excess levels of thyroid hormone also can cause disruptions in the rhythmic pulse of the heart, which is dangerous. In a person who might have heart issues, it can be lethal.

In a report in the publication of the American Thyroid Foundation a few years ago, a doctor reported that studies had shown that even minor levels ("subclinical" levels ) of hyperthyroidism over timen can produce harmful long-term health issues and that it needed to be treated.

The problem an organization like ours has is that there is a lot of unproven information, all the time, especially on the web. But we cannot subscribe to it. The condition is too dangerous. In addition, we have experienced our own "anecdotal" issues with family, and friends on the board dying, for example, because their hearts were damaged by hyperthyroidism. So, if we err, we err on the side of not turning our readers and participants into guinea pigs for unproven theories.

[Author]

Posts