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in reply to: blepharotomy #1074279
Kathy – I, too, was diagnosed in 2005, and had RAI shortly after the Dx, in December of 2005.
What is not clear to me in your story, were your eyes acting up after your RAI, or just corneal abrasion problem? (I’m not sure if one gets corneal abrasion BECAUSE of protrusion).
It seems like your eyes has just recently started acting up? If yes, please DO NOT consider ANY surgery until your eyes burn out, or settle.
My eyes were acting up (sandy, gritty, watery, protruding) for a whole year after RAI. Then they settled. I still have the protrusion, but I don’t feel anything.
Your eyes burn out in their time, over 6-18 months. Only then you can think of reconstructive surgery. Surgeries done in the "hot" phase are the best way to further surgeries, since the eyes are still moving, and they don’t respond kindly to any surgical wound.
However, if your eysight is compromized or your optical nerve is squished, then something more urgent is needed.
But only by orbital deconstruction specialist, or oculoplastic doctor, they have different names. Not a plastic surgeon!
in reply to: Pregnant 3 Months After RAI, will it hurt baby?? #1074172If you search for "pregnancy after rai" in Google, you will see a PubMed publication about women who conceived children after RAI (some as soon as 1 month after RAI). Their RAI treatment was done for thyroid carcinoma though, and as I understand the levels of radioactive iodine given to cancer patients are much higher, in tens of times, than to Graves’ Disease patients.
The general outcome of pregnancies was comparable to the general population outcome. They did mention though that there was not enough data to say if there were any lasting effects on the children. Remember, however, those women received hundreds of radioactive units (mci), not a few units like Graves’ patients.
in reply to: Newly Diagnosed Today with GD OPTHALMOPATHY #1074235Hi Pizzaccatto,
First of all you’ve got two different things going on. One is Graves Disease that affects your thyroid and causes that sweating, fast heartbeat, maybe weight loss, and hand tremors. This can be corrected, there are three different treatments (drugs, radioactive iodine, ot removing your thyroid surgically).
The second thing is TED (Thyroid Eye Disease) that is a disease that will progress on its own. Before taking care of your eyes, the most important thing is for you to take care of the thyroid, to research and choose a treatment you are most comfortable with, out of those three.
The thyroid eye disease keeps the eyes changing and uncomfortable (dry, sandy, watery) for a while. While this process is going on, you will need to wait. The process will take from 6 to 18 months or so, and then the eyes will settle. They may not settle all the way back to where they were, "settling" means the eyes will stop moving or changing. This will be called "cold stage", or "the eyes burnt out". Then there are options to make you look better with surgery.
However, if your sight gets compromised during the "hot" stage, even then there are a couple of treatments available for the eyes (either external radiation or oral steroids).
It’s a lot of info to process, you might need to start researching and getting books about Graves Disease.
Finally, the disease is caused by a change in our auto-immune system, and that change will always stay with us. But the good thing is that it is manageable, with those three treatments.
in reply to: My Story- Babies and PTU #1074221Hi Battamama. Wow. Sorry about your experience. Congrats on your babies – hopefully they are healthy.
What happened with RAI – did it not destroy the thyroid? Anyone recommended you another, second RAI? (two attempts are not common, but not rare neither).
in reply to: New and worried #1074321Rob, hopefully RAI will help you feel "normal" like it helped me, so eventually you won’t even feel like needing to explain yourself. Some people are more sensitive after RAI to Synthroid adjustments, but some are not, like me. Many times I read people’s amazing exclamation, "I feel normal again!" after RAI or TT. I fully agree with them, and I hope for the same for you.
in reply to: What am I in for? #1074333Hi Patricia,
I live in rural Canada (Eastern side) and when my tests came looking like yours (TSH non-existen, etc) my rural family Dr put me on PTU. There must be some guidelines for doctors at what dosage to start, and then it can be adjusted as needed. Do you have racing heart, trembling hands? Some people take beta-blockers along with PTU, to suppress the heart rate. I took only PTU, it brought my pulse rate within normal, hand tremors disappeared, and lab results improved.
A few weeks later saw Endo. (It’s 2 hours drive to a major city). They did an uptake scan on me (a test to determine that it was Graves indeed, and to check for any nodules or other funky stuff). Both my family dr (strongly) and the Endo (mildly) suggested RAI. 3 months after my diagnisis, I had RAI. 3 months because of all those waiting times to see the Endo (I saw him 2 or 3 times), waiting times for RAI, and I myself was unsure what to do. If I knew how easy I’d take it, I would have preferred to have RAI sooner. My eyes got involved 2 months after my diagnosis, so I am wondering had I had RAI before that, would’ve my eyes flared up at all? Probably yes.
Anyway, I needed that time to read and research about the disease. You will see a lot of scary stories from people who had it bad, either on ATDs (anti-thyroid drugs), RAI or surgery. The majority though is not writing on Internet because they are OK.
It’s a disease (or better to say, a syndrom) that will be with you from now on in some form – it’s possible to feel good and normal though with treatment. I can say that currently I feel as well as before Graves. I take one thyroid hormone pill in the morning, and that’s all the difference with what I used to be before Graves.
Due to our Canadian shortage of specialists, there may be not enough thyroid surgeons in that area, so the choice of treatment could be limited.
It’s been 3+ years that I had Graves and over that time I came to value peace. Multi-tasking was good when I was younger and in a high-stress job but but but… The body breaks (for us, it broke in the form of Graves), and that’s a hint. A hint to slow down and smell the roses.
in reply to: Antibodies after RAI? #1074371It is always good to check TSI levels before getting pregnant. There are reports on the Internet of thyroid antibodies causing neonatal hyperthyroidism (in women with either active Graves disease or treated).
The neonatal hyperthyroidism seems to resolve or is helped with PTU within weeks or months, in those reports.
The bigger question to ask is – would you wat to have a child if you know that you may pass pre-diposition for a certain disease? For many mothers who have auto-immune diseases, or epilepsy, or other health concerns, the wish of having a child outweighs the odds of passing the disease.
And to add, if a case made its way to a medical report, it means the case was something out of the ordinary, something new for Drs to be educated about. The reports may be viewed from a different angle – the majority of Graves mothers have healthy babies.
When thyroid levels can be brought to normal (with drugs, RAI, or surgery), eyes sometimes do get back to normal. But generally, the eye disease becomes a disease on its own, with hard-to-predict development. Fear not, the technology is evolving and the eyes can be adjusted with minimal invasiveness – but first, your thyroid levels need to be taken care of, and your eyes need to get out of the "hot" stage, and into the "cold" stage (where no eye development is happening anymore).
in reply to: Orbital Decompression Surgery #1074390Thank you for posting! The surgery greatly improved Patrick’s looks. YouTube would be a great tool for Thyroid Eye Disease patients. So far, I’ve seen several "before-after" picture stories on the GravesOphthalmopathyTEDsupport – in Yahoo groups, but videos are much more effective.
Thanks again!
in reply to: I’m new to NGDF Board…with old thyroid problems #1074449Hi lmatthews,
Do I understand it correctly that you had 2 RAI treatments and your thyroid is still alive, causing you hyperthyroidism?
I do love shellfish, too, and am actually glad that I dont’ have a thyroid to cause me any contra-indication. But since you have a reaction to shellfish – ? If you don’t have your thyroid, does it mean that your thyroid antibodies cause the reaction?
You alre lucky
” title=”Very Happy” /> in a sense that your eyes have been considered "big and beautiful" so far… Are you considering any eye-related treatment (there are so many choices now, from lid correction to whole eyeball correction).You are absolutely right, stress is the thing to avoid for us Graves patients (and anyone really).
in reply to: Allergic to PTU…Headed for RAI…What to Expect? #1074458Deleted, never mind.
in reply to: New to Blog, RAI, TED and Steroids #1074479Hi Rob,
Steroids – my Endo never even mentioned them when he was scheduling RAI (3 years ago). I researched on the net myself and called my GP and she called my Endo and the both of them finally ecked out 10 days worth of steroid pills – one a day 3 days before RAI, and 7 days after RAI. I’m not sure if those 10 days worth of pills helped me in any way. I didn’t feel anything from them.
Eyes – my TED just started a month before RAI – one eyelid started swelling and the eye started acquiring glassy look. Anyway, went ahead with RAI, because I myself wanted to get over the disease. Now what happened after I personally think would have happened to me anyway, regardelss of the treatment – so I don’t blame RAI. My eyes started feeling slightly sandy right before RAI, and kept on going after. 3 months after RAI, when I had that last hyper spike when my thyroid was finally dying, the eyes were at their worst, too – gritty feeling, tearing, light sensitivity. I turned hypo 5 months after RAI, and they eyes got better about 8 months after RAI, only the tearing kept going. The tearing disappeared about 1 year after RAI, so I consider myself healthy for 2 years already. Altogether, my eyes protruded over that one post-RAI year, but not badly, not severe TED – just mild to moderate. Since my eyes have been "cold" for 2 years, this year I’m hoping to undergo an orbital decompression surgery that would set my eyes back – the technology keeps improving, it’s not as invasive anymore.
Energy – to tell the truth, I was one of those cases who didn’t feel much difference before RAI, after RAI, and when went hypo. Surely, I felt better than before RAI because I didnt’ have the heart problems anymore. I was just listening to myself (what’s happening to me?) aftert RAI, and therefore was afraid to do much, but looking back I felt pretty much the same as I feel now.
in reply to: incurable but entirely treatable #1074516Antibodies are always in our blood, but healthy people have them within normal limits. Two tests for antibodies, TSI and TRab, will tell you how effective your ATD treatment is, in addition to free Ts. People in remission have TSI within healthy range.
If people have no thyroid, then the level of antibodies in their blood is less relevant, except for the eyes that could be bombarded with the same antibodies.
in reply to: incurable but entirely treatable #1074512I think it means that this disease should be viewed as a syndrom – it can be controlled, but will never go away. Autoimmune diseases, once gotten, don’t disappear, but can be controlled. We’ve got anti-thyroid antibodies and there is no cure yet to get rid of them.
Drugs can control thyroid levels (treatable).
RAI and TT will result in hypothyroidism that needs to be controlled with thyroid hormone (treatable).
in reply to: Going Crazy!! #1074528– PTU is supposed to take care of hand tremors and heart palpitations. If yout FT3 and FT4 levels are within norm, there should not be tremors and palpitations. If you still have them, then you and your endo should be searching for levels (adjusting PTU amount) that agree with you (there are ranges for FT3 and FT4, some people feel better when their levels are closer to upper or lower side of those ranges).
– no, there is no other medication other than ATDs (Anti-Thyroid drugs), of which PTU is a representative.
– you don’t really want to wait until your case will be severe enough, because that may end up in a thyroid storm (petentially very dangerous condition), or you won’t be eligible for RAI.
– some people don’t lose weight with Graves, and some even gain weight – though they are in minority.
– thyroid eye disease is a separate disease. It may start together with Graves, but it will take its own path, regardless of your treatment. Nobody can predict how it would proceed in your case. For some people, eyes don’t change. For some, after mild protrusion, the eyes settle back. Sometimes there is no protrusion but lid retraction (the stare effect). Sometimes, there is everything, eye protrusion and lid retraction. There are some treatment choices (surgical, steroids and radiation, – no medication), but the surgery won’t be done until your eyes settle, that is, until you don’t have any feelings (tearing, sandy, gritty – nothing). That "burning out" process could take from 6 to 18 months.
– if your vision is compromised (double vision or the optical nerve is squished), external radiation or steroids can be applied. Though steroids relieve the pain, you want to steer clear from them because of the side effects, that is, they would be done only if really necessary.
– before worrying about eyes, you need to decide which treatment path you would like to pursue. There is a choice of staying on PTU – some people achieve remission and stay off any drugs. Others take RAI or undergo a surgery to remove thyroid. You need to research, research, and research before making a commitment. As you can see from posts on this board, it’s a hard choice sometimes to make. Don’t allow yourself to be pushed by anyone. Do RAI only after you researched about RAI and feel comfortable. As well as with the rest two treatments.
– View it not as a disease but a process, a syndrom. There are no quick fixes here. One way or another, you will be taking something for life. This disease requires a lot of waiting regarding eyes.
– Research, research, research.
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