[gerical]

#1059960

I am recently diagnosed with Graves disease and have been on methamizole for about a week. The last couple of days I noticed my legs were feeling very heavy and today they are swollen. Has anyone else experienced this? Its not worse enough you have all these emotional swings going on, now the visible stuff as well….. Hate hearing myself complain about stuff…so not used to this!

[barbsie]

#1179088

Hi Gerical,

Yes I had swollen legs and ankles for about 6months before i was diagnoes..i have was diagnosed graves 16.12.11. I remember legs being so heavy i could barely walk upstairs and I would walk a short distance accross the room and be puffing and panting. Endo said it was because of rapid heart rate that was causing ankles to swell and I was put on beta blockers. She also explained that Graves Disease was inflammation in the body. My legs were inflamed for months afterwards and my ankles stayed swollen for for a good year, and they still come up and go down. But the doctors cant tell me why this is happening now that my thryoid levels are within the “normal” range.

I hope this is helpful, one of the volunteers will respond to your message soon .

Cheers from downunder..

[peppernnutmeg]

#1179089

I have been on methimazole for 2 weeks, my legs felt like I was retaining massive amounts of water, I took a water pill and that helped. I am lucky and am able to keep my legs up for a lot of the day and that may also help. I haven’t had any of the other symptom’s listed, yet. I guess we just have to wait and see how it goes.
Megan

[Kimberly]

#1179090

@gerical – Since this is a new symptom, I would suggest calling your doctor’s office to report this. There can be a number of causes for leg swelling, so it would be good to get an expert opinion.

@megan – Definitely use caution with diuretics, as they (like any other med) can cause unwanted side effects. Here is some info from the Mayo Clinic:

http://www.mayoclinic.com/health/diuretics/HI00030/NSECTIONGROUP=2

[gerical]

#1179091

THanks for the replies megan, barbsies and Kimberly. I emailed my endo and waiting for her to call me back. THanks for the resource. I have been doing a lot of surfing through the literature just so i know what the endo is talking about. Again, I feel so fortunate to had found this site where there is support and information. It is a blessing……..

[donnabgraves]

#1179092

I also have leg swelling and have gained 35 pounds over the last 2 years. I was just diagnosed with Graves disease today. I know my Dr. wants to do RAI.

Will I feel better and possibly loose weight after this procedure is performed? More importantly, does the heart palpitations and tachycardia end and the hopeless feeling of extreme fatigue go away?

Thanks for anyone input.

Donna

[Kimberly]

#1179093

@Donna – *All* three treatment options (anti-thyroid drugs, RAI, and surgery) have the potential to restore us to good health. However, each option has risks and benefits, so you definitely want to do your research before making a final decision. The “Treatment Options” thread in the announcements section of the forum is a great place to start.

We do have members here who have had success with RAI and been very happy with that choice — but it’s important to understand the risks and understand why your doctor is recommending this option for you vs. the other two choices.

Take care!

[donnabgraves]

#1179094

Kimberly,

Thank you for your answer! I am truly scared and confused. My sister (middle sister) just told me yesterday that someone else she knew of had Graves Disease, but failed to tell me she know has cancer. Thanks to my other sister (oldest sister) I just found that part out and that really scared me. I love them both dearly and I know they are both very worried.

My oldest sister knew a lady with Graves and she is now deceased. My middle sister informed me today to be sure to research the RAI procedure because she just read that it can cause more problems with my eye issues. Three years ago I started having problems – dry eyes, torn corneas, etc. I’ve been on Restasis drops twice a day. So, needless to say now I’m extremely worried. I just got my medical back not to long ago and I used to fly airplanes commercially and do flight test now. My health and eye sight are extremely important to me. I guess they would be even if I didn’t want to fly.

Have you ever heard anything pertaining to RAI treatment affecting the eyes and creating additional or potential problems?

Thanks again for all your help and support!

I love this website.

Sincerely,
Donna

[Kimberly]

#1179095

@Donna – Here are a couple of the more well-publicized studies on the connection between RAI and thyroid eye disease, listing the percentage of patients who had either new development or worsening of TED following treatment:

Bartlena 1998:

RAI: 15%
Anti-Thyroid Drugs: 4%
RAI + Steroids: 0% (although of course, steroid therapy comes with its own risks and benefits)

Traisk 2009:

RAI: 38.7%
Anti-Thyroid Drugs: 21.3%

Eye complications are not a given with RAI — 85% of the non-steroid 1998 RAI group and 60+% of the 2009 RAI group did NOT have eye complications. And there was one study (Perros et. al from 2005) that concluded RAI was *not* a risk factor for patients with “minimally active” eye disease as long as hypothyroidism was prevented with early administration of T4. However, the majority of studies have noted an increased risk of eye issues post-RAI, and this is certainly something to take into consideration when making a final treatment decision.

The latest guidance on treating hyperthyroidism from the American Thyroid Association and American Association of Clinical Endocrinologists (which you can find in the “Treatment Options” thread in the announcements section of the forum) discusses the link between RAI and TED. The section on RAI and eye involvement starts on page 622 of the journal article; page 30 if you download the guidance as a PDF doc. Their recommendations are based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”).

By the way, two of the GDATF’s Board members are pilots…maybe the three of you will be able to connect one day and “talk shop”!

[donnabgraves]

#1179096

Kimberly,

Thank you so very much for your support. I am so happy that I found this forum. It is so helpful. My T3 currently is 6.0. I see the eye doctor on Wednesday and the Radiologist on Thursday this week for a consult for my RAI procedure. My Thyroglobulin came back positive and confirmed the scan. The antibodies were positive for GD.

Hopefully, the RAI will correct the high T3 level and the antibodies or however it works. Again, still extremely new to this.

I would love to talk to the board members. I haven’t notified the FAA, but plan on doing so after I have my consult on Thursday.

I would like to thank you again for the support and articles. I’ll start reading!

Sincerely,
Donna

[gerical]

#1179097

endo increased my beta blocker but legs are still swollen especially toward the end of the day. I am on my feet all day so it is hard to help the situation. I have an appointment with a cardiologist in a week or so. the eco said no to the diuretic because the beta blocker has my blood pressure around 90/50. must be why I feel so lousy. Hope all is well with everyone.

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