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in reply to: RAI and weight gain #1184837
I had RAI about 12 years ago and I did notice some weight increase (about 10-12 lbs) but I do think it was more related to calories consumed > calories expended. For most of my adult life (I am 61 YO), I had weight issues in spite of cycling 3500-4000 miles per year on my bike, walking a few miles every day, swimming and yoga. When I was diagnosed with Graves I did not have the classic weight loss issue that is seen in many. In March of this year I moved to a primarily plant based diet (no meat, chicken or fish, no milk/yogurt, still eat an occasional egg and sometimes cheese). I have lost 25 lbs and feel great. This is a weight loss that I could never accomplished by massive amounts of exercise alone. I just wanted to share my story, am not trying to push any one approach but I do think that sometimes we use thyroid issues as an excuse for weight gain. I also want to make clear that there are metabolism issues related to thyroid disease that I do not think the medical community fully understands. Eating a plant based diet is one way to clear the body of toxins and provide healthy fuel. It’s worth a try.
in reply to: Success Story (A Blast From the Past) #1184289Just a quick comment – I had issues 4-5 years ago getting TSH under control after RAI for Graves. My doc suggested I switch from generic Levothyrozine to Synthroid (brand) and my thyroid levels have been stable. I have heard anecdotal stories of people having the same experience when on the generic. Once they switched to Synthroid the variability goes away. It is definitely more expensive ($4/month vs $35/month for the brand) but it is worth it.
in reply to: to have ablation treatment? #1183949Hi Debbo,
I am an infrequent poster but just posted an update today, so go ahead and read it. I had RAI almost 8 years ago and I recovered beautifully. I did not experience the swings in thyroid levels as some others on this forum will report. As a matter of fact, I never even went hypo, my endocrinologist monitored my blood levels very closely so I never really “crashed”. I did get thyroid eye disease, I am not sure if the RAI put me at higher risk for that or not. My endocrinologist likes to say “if you want to start a riot at an endocrinology conference, take a position on whether or not RAI puts you at risk for getting TED”. His feelings are that it does not increase the risk.
I have met a number of people who had RAI and they recovered well with no after effects. You will read of others here on this forum who did not have a good experience. It is a difficult scary decision and you don’t feel good which makes it so much harder to make a good choice! so at the end of the day just make sure you have a doctor who you trust, get as much information as you can, then move forward.
I know it sounds trite but it will get better, you will feel “normal” again.
Pattiin reply to: Things my Forum Friends have taught me … #1183956Hi everyone! Nancy, you are so right, most of the people who search the Internet about info on Graves, and find this forum, are the folks who are newly diagnosed and scared out of their wits. I know that I found this forum early on and it was SO helpful to me. To add the anxiety of the diagnosis to an already overloaded immune system and emotional state was, at times, overwhelming.
I have to say that of all the posts, the ones that Shirley wrote were always the ones that touched me the most. She has been through so much, and when I was diagnosed with TED, I went back and read many of her postings about the eye disease. She may not know this but, in the worst of it, I would think about Shirley and how she has managed to have a great life in spite of Graves!
It has been 8 years since my Graves diagnosis and 6 years since the TED kicked in. I had RAI soon after my diagnosis and it took about 6-8 months to get my TSH in a good place. I get my TSH checked twice/year and have had to do a little tweaking but I feel great! The TED was a more difficult time. There were about 3 years of constant pain, taping my eyes shut at night, terrible double vision, not to mention the physical changes to one’s appearance. I had 4 surgeries altogether, and the last surgery 2 years ago has my eyes closing properly. The double vision did improve over time, but I have some prisms in my glasses which help when I am tired (the double vision seems to worsen with fatigue). Before the TED diagnosis, I was an avid swimmer and a regular at the YMCA pool. For 3 years I couldn’t swim because the goggles hurt my tender swollen eyes, and the chlorine was unbearable. I am happy to say that I started swimming again this year and am working on doing 60 laps for my 60th birthday in a few weeks!
The Graves sure woke me up to the impermanence of life. It also helped me to see that even though my physical body had changed, who I really am will never change, and that in fact the Graves has helped me to be a more compassionate person.
This forum has been a godsend to me.
Pattiin reply to: newly diagnosed and a bit confused #1183547Hi there!!
Well my heart just went out to you, reading your post and hearing the anxiety and the feeling of being overwhelmed. As Shirley said so eloquently in her post, none of us had ever heard of Graves when we were diagnosed! You just have no idea how serious and complex a disease it is.
Having to deal with all of this stress, and suffering from a disease that exacerbates the stress and makes you sicker. Not working might be a struggle in the short term, but a medical leave is exactly what you need and deserve. I ended up going part time (with huge anxiety about the money loss) because I was just so sick. Working less is what helped me to heal more quickly. So I encourage you to allow yourself to do that.
Yes you will get better! I had RAI 5 years ago, have been euthyroid (that means normal thyroid hormone levels) for the last 3 1/2 years. Never really went real hypo, my thyroid levels have been really stable. I did develop TED but I am in a small minority. Most folks with Graves don’t get the eye disease.
So welcome and know that you will now have a place to share your thoughts, and get some feedback and encouragement.
Pattiin reply to: First time posting #1183017Dear LWilliamson,
As Kimberly, the moderator of this forum will tell you, we are not doctors here. We are folks like your daughter who have Graves disease and are learning to live with it. You did not say how old your daughter is. How difficult it must be for you, as her mother, to watch her suffer so and be unable to alleviate it.
I ended up having to go off the methimazole and had RAI. Many of your daughter’s symptoms were things I struggled with, and reading about them brings back those awful memories. I felt moved to post this response, just to tell you that things will settle down after the medication takes affect and your daughter WILL get better. It may take some time, and there will be a roller coaster ride, but don’t despair.
You have found a great forum here with folks who are willing to share their knowledge and a place where you will not feel so alone.
Pattiin reply to: More TED trouble #1182810Hi Scanders – yes, 4 years ago in Feb 2010 I had the RAI, then started to develop swelling of the upper and lower lids in the summer. The eye soreness and dryness continued to get worse, but the double vision didn’t start until the Fall of 2012. I did a round of steroids to get the swelling and pressure under control, but the eye doc said we needed to wait 1 year with no disease progression to make sure the disease was in remission before he would repair the eyelid retraction.
As far as I know (and remember we are not doctors on this site just regular folks) I don’t think the double vision will “go away” on its own. I think the muscles are permanently damaged (Kimberly or Shirley can chime in here) and the only solution is surgery. But please get this info from your doctor.To your question – how have I coped with TED for 4 years – well, I would say that I moved beyond coping to learning to accept this as a part of my life story. And, as a hospice nurse, I see some pretty horrible diseases. I guess I realized on some level that we all have to deal with something in our lives, and I gave up worrying about how I look to focusing on being able to see. The TED may go into hiding, but the damage it has done to my eyes is still visible. My eyes still are sore and irritated. But it is so much better. It is not the first thing I think about when I look at myself in the mirror in the morning. And I trust that I have good doctors and that whatever happens I can deal with it. I am living with the double vision because the prisms are working for me. Someday down the road I will get it fixed.
What else can you do? Life is too wonderful and precious to spend time feeling sorry for myself. Don’t get me wrong; in the beginning I was freaking out! but over the 4 years I have learned to accept it. I hope that, for you, the same process will happen and that you will be able to take it one day at a time.
Patti
in reply to: More TED trouble #1182807Hi Shirley!
I know you are still struggling with the one eye not closing; if you read some of my other posts you’ll remember I had the same issue. In December 2013 I had bilateral lower lid retraction surgery and the doctor used bovine collagen as the muscle replacement material. I have seen a significant improvement in my eye discomfort and dryness; also the terrible light sensitivity has improved significantly. Last weekend, I rode on the back of a jet ski – I had no eye protection on at all, we were flying thru the water at 50 mph and I had no eye discomfort at all! it was then that I realized what a good job this surgeon had done. I know you are burnt out from all the surgeries, counting the one in December I have had 4, and I hope I am done for awhile. I have pretty severe double vision but the prisms work pretty well for me – at some point down the road I will have the strabismus surgery but not anytime soon.
So I wish you well in whatever decision you make. The last 4 years have been TED hell, I am leaving on Friday to go hiking in the Italian Alps because I am finally getting my groove back!! Best to all of you on this forum.
Pattiin reply to: double vision #1182324Hi gzow,
I am sure you will here from other folks who have experienced the double vision and how they managed. When the double vision first started, I found that close up work was OK, it was driving and longer distance vision that was really bad. So for awhile I used 1X magnifiers from The Dollar Store which I taped one of the lenses, which gave me single vision so I could drive safely. I did see an eye doc who specialized in treating double vision, he gave me prisms for my glasses which have been miraculous. I know other people on this forum have not had much success with them but, for me, they were life changing. At some point I will probably have the surgery to fix the double vision but I just had my 4th eye surgery at Xmas so I need a break! the prisms work just great for now.
As far as “going away” mine has not, I have had the double vision for about 1 1/2 years now. It doesn’t seem to get better or worse. I believe I am considered to be in the “cold” phase. I sure hope so!
Other folks will chime in, Shirley (one of our regular posters) had the surgery and was very happy with it. All in all, you have options and things will get better!!!
Pattiin reply to: TED treatment? #1182164Hi Scanders,
I have had alot of experience with the issues you are having so I will chime in with my two cents. My understanding is that the increased ocular pressure is due to the eye muscle changes related to TED and their lack of “flexibility” if you will. My ocular pressure on direct gaze is high/normal; when I look up the pressure shoots to 30. I have been on Combigen drops for over 1 1/2 years now. I too have pretty bad double vision that is managed pretty well with the prisms. I see the eye doc every 3 months and he checks things out, making sure that the optic nerve is healthy. At some point down the road I will have the strabismus surgery to correct the double vision but I have had 6 surgeries in the last 3 years for these darn eyes so I am in no hurry for another. It sounds to me like the eye doctor is doing the right thing, watching things carefully and monitoring for any changes in visual acuity.in reply to: Just saying hi and glad I found this forum #1182024Hi GravesRookie,
Welcome to the forum! You will find some valuable information here , along with kindred spirits with whom you can share your fears, ask questions , and celebrate good health! Because, as our forum friend Shirley likes to say, you WILL get better.
I had RAI about 3 years ago and never looked back. I had a great doc who kept his eye on my TSH so I never went hypo. It took some tweaking to get to the sweet spot but overall I have never had big swings in my thyroid levels and I did get better! One suggestion I would make is to find a good opthamologist who is familiar with Graves and thyroid eye disease (TED) to get a baseline assessment. A very small percentage of people with Graves have some eye involvement so it is important to find a good eye doctor.
I understand your anxiety, Google can be your best friend or worst enemy when you are first diagnosed. That’s why I stick with this forum. I think that the diagnosis can also be a time of reflection for you in which you can commit to really being kind and patient with yourself. It will take some time but you will be well again. Good luck to you! keep us posted on your progress.
PattiHi Kimberly,
I would like to know more about the long term prospects for remission after TED has run its course. And, if possible, what steps a person with TED can take to reduce the risk of a relapse. I am 3 years out, with multiple surgeries for lid retraction and severe double vision. Things have been “stable” for almost a year – ie, no worsening of symptoms, no change in proptosis based on measurements made by the neuro-opthamologist. Again, would be interested to hear my chances of relapse and what I can do to avoid it,
I have already made alot of changes; reduced my work hours to 3 days a week; I decided that the stress was very bad for me and have learned to live on less money. I am getting alot of good sleep, practicing meditation on a daily basis, and learning to give up my need for control. So I feel great!! but my darn eyes, boy they are a source of real discomfort.
Pattiin reply to: Puffy eyelids since july #1181056Hi Shakira7,
I had RAI in February 2011. I recovered from that very well – never went hypo. Started on Synthroid and had to make some minor tweaks but felt pretty good. The eyelid swelling started in the Fall of 2011. It continued to get worse, and then I developed really bad tearing and light sensitivity. In April of 2012 I had the upper/lower blepharoplasty. In hindsight, I see now that the disease was still active and the surgery was premature.in reply to: Puffy eyelids since july #1181051Hi there!
I wanted to chime in with my own puffy eyelid experience. It is really really important for your eyes to stabilize before you do any kind of eye surgery. I had really puffy lids, the eye surgeon told me that he thought the disease was stable so he did an upper and lower blepharoplasty. Well, the disease was still active and my eyes continued to worsen to the point where I now have double vision and proptosis. The premature blepharoplasty means that my lids are now retracted and I have to tape them shut at night. I have been 8-10 months now where my eyes seem stable so the surgeon (a different one then the one who did the first surgery!) feels that by early next year I will be ready for a procedure to try and make my eyes close properly.
The message I am trying to share with you is to be patient and don’t rush into any surgery unless you and your doctor are certain that the disease is in remission and that your eyes aren’t changing.
Pattiin reply to: Pins and needles #1180681Hi Kalty,
Just a quick reply to your question on itching. It was the awful itching that finally got me to the doctor 2 years ago and was diagnosed with Graves. The insomnia, fast heart beat, sweating and anxiety was something I thought was “stress”. But the itching got so bad I had to wear pajamas under my clothes to go to work. The endicronologist that I saw initially said that the itching was not related to the Graves; but I spoke with another doctor about it and she said that when the heart rate is elevated there is an increased blood flow to the skin which can cause itching.
I ended up having RAI and the itching went away. The itching was awful. Even now if I get an itch somewhere it brings back those awful memories.
I hope you get things straightened out and are back to feeling well soon. -
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