[beach45]

#1059078

I have read previous posts here that are very good regarding Pretibial Myxedema (also called thyroid demopathy) which I know some people can have with Graves disease symptoms.

I was curious because having RAI myself 3 weeks ago and from information I heard from another source, that Pretibial Myxedma, can become much more severe just like Thyroid Eye Disease (TED), after RAI and also after TT. This person shared pictures of people with Elephantitis saying that doctors do not warn people who have RAI or TT that this could happen afterwards, months or years later and that the only way to avoid this situation is to keep your thyroid.

Research I have done myself points to that pretibial myxedema can be controlled and it is rare. I may be wrong yet I did a search and found a good article from the Journal of Clinical Endocrinology and Metabolism on this subject of Graves and pretibial myxedema, yet it does not go into that this condition worsens after RAI or TT.

What I also gather from talking with some that this skin condition of Graves disease may worsen after RAI yet it then clears up? That just like TED, not everyone develops this condition.

This same source said that after RAI or TT, especially after RAI that the reason that this condition can get so aggravated is that antibodies shoot up to 4000. I researched and found differently in one study that antibodies can stir up after RAI yet they do calm down as in this study where a person with Graves disease had antibodies reading of 4000 prior to RAI and it went down to antibodies reading of 25 (with normal being <30) 6 weeks after RAI.

I never even thought about the pretibial myxedema which can develop due to Graves disease especially since it does not seem to occur as frequently as TED although I may be wrong.

Thank you in advance for any input.

beach45

[Bobbi]

#1171994

First off, we do NOT get elephantiasis, exacerbated by RAI or otherwise. Pretibial myxedema and elephantiasis are two vastly different things. Elephantiasis is caused by microbes, carried by mosquito as the vector, it is not caused by antibodies. Pretibial myxedema is caused by antibodies. And while pretibial myxedema can be at least temporarily disfiguring of the SKIN on the legs, it tends not — in general at least — to be anywhere near as bloating and disfiguring as elephantiasis.

Please be careful what you pull off the web from other sites. The web is an uncontrolled environment where anyone can say anything regardless of it’s veracity, and have a reading audience. There’s a whole lot of BOGUS information out here in cyberland.

From what I have read, pretibial myxedema is associated with TED. What I mean is that people who do not experience TED tend not to get pretibial myxedema. But not everyone who gets TED gets pretibial myxedema, either. The skin disorder is very rare. I managed to “win” the trifecta, but most people do not. So, insofar as the symptoms of TED can be aggravated — at least temporarily — by RAI, due to antibody action, so, then, one might see pretibial myxedema symptoms as well. Although I have NEVER heard of studies looking at its association or with RAI.

Pretibial myxedema and a distortion of finger joints (I think it is )– called acropachy, are both associated with people having Graves. They occur rarely — I believe it is less than 1%. Also associated with Graves is, of course, TED, which is much more common. Precisely why this is, we do not yet know. But given that TED can occur decades after Graves has been diagnosed and treated (by whatever means), so, too, then, I would suspect one might turn up with the other problems if TED does occur.

And, no, to my knowledge, “keeping our thyroids” does not prevent any of the above. That statement was made, wherever it was made, out of ignorance. People with functional thyroids, and no discernable malfunction, have developed severe TED. People with thyroids on antithyroid drugs develop TED. Whether or not you keep you thyroid is immaterial to the development of these other problems as far as I know.

[beach45]

#1171995

Thank you for the response Bobbi!

I needed to confirm things here because I get very disturbed when I hear on other Internet groups when erroneous information is being given out about Graves disease; especially when newly diagnosed people are reading this information. I have listened to some people who have Graves and are on ATDs on the Internet who are trying to scare others who have decided to or had done RAI or TT. I believe it is a personal choice and patients decide through being guided by their endocrinologist which is the best treatment option based on their personal circumstances or severity of the disease. I was given the option to stay on ATDs for a long while and it just did not work out well for me. I opted for RAI although TT was also an option given to me by my endocrinologist.

I find there is a lot of misinformation being discussed on different forums on the Internet, why I prefer this site as you and the other facilitators give out very good, solid information from reliable sources and also share some very positive personal experiences. I learned a long time ago to disregard the negativity on the Internet as I believe many have decided upon RAI or TT to treat their Graves and have had very good outcomes.

I needed to hear also that keeping our thyroids does not guarantee that we will not develop pretibial myxedema or TED.
For me, the treatment RAI seems to have a very bad reputation and I hear an awful lot of people saying they develop so many problems post RAI such as those saying that people develop pretibial myxedema.

Thanks again for the very detailed, informative response….beach45

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