mdpw715March 10, 2018 at 3:51 pmPost count: 12
After 18 months of multiple symptoms and not finding out what was wrong, I was finally diagnosed with Graves Disease. I was put on ATD which after 2 weeks was discontinued due to liver problems and severe itching, hives/rash. My doctor said that it was likely that I would need RAI treatment. I completed my uptake and scan on Tuesday and am awaiting my results. I have read so many bad things about this treatment so I’m looking for information from someone that has actually had this done to see what they went through both emotionally and physically. I’m really worried about future cancers and complications from this treatment. Also, has anyone tried alternative treatments?KimberlyOnline FacilitatorMarch 12, 2018 at 10:24 amPost count: 4279
Hello and welcome – we’re fellow patients here, not docs, but a few notes…
Liver and skin issues can be a reaction to anti-thyroid medications, but in other cases, can actually be caused by the hyperthyroidism itself.
The latest medical guidance notes that for “minor” skin irritation with antithyroid meds, you can keep taking the drug in conjunction with antihistamines. Ultimately, your doctor will need to make a judgment call as to whether or not your reaction is “minor”.
On the liver issues, baseline testing prior to starting the meds is recommended. That will help sort out whether the liver issues are due to the thyroid or the medication.
We have patients here who are success stories with RAI, although there are certainly pros and cons. One of the larger studies on cancer & RAI involved 35,000 patients who were followed for 20+ years. This study indicated no increased risk of death from cancer. However, other smaller studies have noted a slightly increased risk of specific types of cancer following RAI. A more immediate concern would be whether you have existing eye involvement, as RAI can potentially worsen existing disease. A course of steroids can reduce this risk to near zero – but of course, steroid therapy comes with their own risks and benefits!
At this time, there are NO alternative treatments that have been proven to be both safe and effective for Graves’ disease.
A final note – keep in mind that many have RAI and simply move on with their lives. These folks generally *aren’t* posting on the Internet – so that is why the info online is skewed towards negative experiences!emmteeMarch 13, 2018 at 1:36 amPost count: 148
When I had my uptake and scan, the nuclear medicine doctor went over the results with me directly after the second scan – I didn’t have to wait. He was actually the one who told me I had Graves’. Before that, based on blood tests, I was only diagnosed as hyperthyroid.
It’s too bad that the methimazole didn’t work out for you. That leaves you with fewer options and forces you to make a decision when you may still be feeling a bit anxious as a symptom of your Graves’. Did your endo mention thyroidectomy at all or is he pushing RAI? I’ve heard that a lot of endos here in the U.S. do that. I was fortunate to have an endo who presented all the options and let me make my own choice.
I wouldn’t worry about cancer from RAI. They’ve been doing it for decades; it’s very safe. My only concern with RAI is the increased risk of thyroid eye disease. Also, if you have young children, the isolation period after RAI can be difficult for them – they don’t understand.
Surgery has its own set of risks, but these are minimized if you have a really good surgeon, as I did. As surgeries go, it’s fairly easy. I was a little concerned about having a scar on my neck, but it’s really not very noticeable, and TBH I’m kind of proud of it.mdpw715March 13, 2018 at 1:20 pmPost count: 12
Thank you for the information. Medications are out of the picture, liver functions prior to ATD were normal, my doc said it was to risky to continue on them since it put me on boarder line irreversible liver failure, even to try PTU put me at 50% chance of liver issues. Her plan is to see if scan and uptake come back hot which would indicate RAI path vs. cold which would mean surgery. She also said that at this time, she doesn’t see any eye involvement…don’t really understand the whole eye side of Graves, she didn’t really discuss this since see didn’t see any eye issues. Do you always end up with eye problems at some point? Can you have Graves without ever having eye problems? My Chiropractor suggested talking to an alternative/holistic doc to see if diet might help. I have gone gluten and dairy free since reading that these aggravate Graves. Have also read that diet (gluten, sugar and dairy free) will put or help put you into remissions without needing RAI or surgery. If I do go with the RAI treatment, do you have to be on a special diet for the rest of your life also?Liz1967March 13, 2018 at 2:57 pmPost count: 305
Diet is not going to cure your Graves. I fell into that trap initially because I really wanted to believe I had some control over the disease. I did the gluten free, selenium supplements, etc and watched the eye disease occur and progress to sight threatening disease. Not everyone has eye involvement but it can occur at any time, even years after your diagnosis and can recur. I had it and it is something you really really do not want to have. There is more risk with RAI but it can happen with thyroidectomy or methimazole too. I chose thyroidectomy as studies have shown the eye disease stops sooner after TT than other courses of treatment. Do not waste time with unproven therapies. This can be a wicked and life changing disease and it requires serious medically proven treatment.KimberlyOnline FacilitatorMarch 13, 2018 at 5:57 pmPost count: 4279
Concur 100% with Liz1967 that diet will NOT cure your Graves’ – whatever website is claiming this is true is putting patients at extreme risk.
The first year after I was diagnosed, I went on an extremely restrictive diet (in addition to taking methimazole and having regular visits with my endocrinologist) – no gluten, soy, dairy, eggs, etc.. Quite frankly, the only thing the diet changes did for me was cause extreme stress! Other patients report that they do feel better with diet changes in conjunction with conventional medical treatment.
Eye problems can occur before thyroid dysfunction, after treatment, or not at all. If you have no symptoms, great, but this is just something to be aware of. For some patients, their first eye symptoms (swelling, grittiness, dryness) appear months or years later – and they end up getting misdiagnosed as having allergies!mdpw715March 14, 2018 at 3:05 pmPost count: 12
Thank you for the input, yes, I feel very stressed and pressured to find the right answers and treatment for me. I hear from all sides to make sure that I’m doing the right thing, (RAI or surgery if results show a cold thyroid) because I won’t get any second chances and while I know they’re concerned, those comments don’t help, just adds to the stress.
Regardless of which treatment I will have, do you need to be on a restricted afterward? I love seafood and gotta admit, I do like saltly snacks! How normal is life after treatment, I feel like it’s going to be a lifetime of ongoing blood tests, constant adjustments of thyroid meds and endless worry that the Graves is going to flare up and effect my eyes? Am I just over reacting and paranoid?Liz1967March 14, 2018 at 3:37 pmPost count: 305
I had a total thyroidectomy nearly five years ago. I eat whatever I want, trying like everyone to eat healthy of course, but I certainly do not restrict seafood or anything else. No special diet at all. I did gain several pounds while on steroids for the eye disease but my BMI remains in the normal range. I am 69, I do yoga, walk my two large dogs a couple miles a day and watch my five year old grandson. Plenty of energy, no restrictions on activity. I get my TSH tested once a year. I am within 12 micrograms of my starting dose of generic Synthroid (levothyroxine) so it has not changed in years. The only medication I regularly take is the levothyroxine, one little pill every morning and that is it. If I had not had the eye disease, which left me with some dryness and residual double vision, I would totally forget I have Graves. I feel normal, exactly as I did preGraves.
There are studies that indicate total thyroidectomy may help your chances of avoiding the eye disease, but it happens in people who have had TT. You really cannot live in fear as it is still relatively rare. I would suggest seeing an ophthalmologist even if you have no symptoms just to get baseline values so it will be easier to spot early changes in your eyes. Stress and anxiety are not your friends in this disease, and if you are hyperthyroid you will be even more anxious, so the sooner you get your thyroid hormones in normal range, the better.
I had severe eye involvement that required steroid, orbital radiation and six surgeries on each eye. Today my eyes remain a bit dry and I need to waer prisms in glasses to drive, but even having had the worst case scenario, I am able to function normally visually and cosmetically I only have one very slightly lower lid. So even if the eye disease occurs, in many cases it can be mild with just some dryness and even worst cases like mine are fixable.
So yes, Graves is scary but it is manageable and things do return to normal. Choose your doctors carefully, those with experience with Graves. Have consults with endos, ENT surgeons, radiation specialists and an oculoplastic or even general ophthalmologist. Learn as much as you can and it will be easier to make decisions.LelesgalMarch 14, 2018 at 5:25 pmPost count: 1
Suddenly one morning, when I looked in the mirror, my eyes were swollen, itchy and bugging out of my head. It took 5 doctors, including 3 specialists, a full year to figure out it was Graves and Hyperthyroid. I’ve been on varying doses of Methimazole since last October and have one more blood draw to determine if it’s finally working. It’s made me terribly sick getting used to it, but nausea and stomach cramps seem to have leveled off. I’m terror stricken regarding eye surgery for Graves, and don’t know what I’ll do along those lines. But I have decided on the total thyroidectomy instead of the RAI. I’ve been researching and found that the RAI won’t guarantee that Graves doesn’t return even worse and there’s a chance of gaining weight. When I discussed it with my endocrinologist and an eye surgeon, they confirmed that these are possible outcomes. Good luck with whatever decision you make.emmteeMarch 15, 2018 at 1:38 amPost count: 148
There’s no curative diet for Graves’. You should be aware that having a diagnosis of one autoimmune disease puts you at greater risk of getting a second autoimmune disease, and some of those diseases have special diets. I wonder if that’s why some people feel better on restrictive diets – maybe they have other issues that haven’t been diagnosed.
If you go the RAI route, you may be asked to follow a low-iodine diet for a couple of weeks prior to the procedure. This means no seafood. It’s only temporary, though. On the thyroid cancer bulletin board (where I first learned about it) they say it’s pretty bland. The reason behind the diet is to starve the thyroid of iodine so that it absorbs more of the radioactive iodine. I know cancer patients follow it, but I don’t know if it’s standard practice for Graves’ patients. That would be something to ask your endo about.
Regarding blood tests, yes, you will have to have them for the rest of your life, but not as often as you do now. My endo told me that after my TT, once I was stable, I would only need labs and appointments twice a year. I have a tricky case and I’m still not stable yet, but I’m down to three appointments a year.
The risk of TED is greater with RAI, but you can still get it with TT. I have some very minor, intermittent issues in one eye. Like I said, I have a tricky case – low TSH that has persisted, and since my eye issue comes and goes, I’m hoping it will go for good once I’m euthyroid.emmteeMarch 15, 2018 at 1:59 amPost count: 148
In case I wasn’t clear before about special diets after RAI and TT: There are none. You can eat everything you did before. My TT went so well (and I was so hungry after fasting so long) that I had a regular dinner my night in the hospital. My TT was actually the week before Thanksgiving. It generally takes a couple of weeks for the hoarseness to go away, but other than my voice and the fact that I got tired and went home earlier than normal, it was like any other Thanksgiving holiday. I ate all my favorite Thanksgiving foods. I even cooked a couple of dishes myself.mdpw715March 15, 2018 at 12:58 pmPost count: 12
I’m glad to hear that life can get back to normal after treatment. Even though I had a complete eye exam 2 months prior to my diagnosis, I have an appointment with the eye doctor Tuesday morning to him check them again before making any decisions on treatment. It seems that if there is eye involvement, RAI is not the best option. At this point, I’m leaning toward TT, it sound like it’s the better option and I won’t have to worry about long term health issues due to radiation exposure. If anyone has any questions that they asked their doctor that was helpful, please let me know.Liz1967March 17, 2018 at 5:34 amPost count: 305
Ask the surgeon how many thyroidectomies he performs every year, should be at least 50. Also if you will be getting nonradioactive iodine preop, which reduces bleeding. You might ask if he/she usually manages Synthroid dose for the first several months. My surgeon managed mine for six months and he was spot on with the dose. The ophthalmologist should measure eye protrusion with an exophthalmometer, check color vision, check intraocular pressure and do a Schirmers tear test for dryness, in addition to regular vision check. If normal, this will give you a baseline to compare results down the road should you start noticing change.mdpw715March 17, 2018 at 4:02 pmPost count: 12
Thank you so much for this information, I will make sure the eye doctor does all these tests when I go on Tuesday. I’m still waiting to hear from my endocrine doc to see what the scan/uptake determine but at this point, while I’m not to crazy about surgery, I feel that surgery is the best way to go, I really don’t want to solve one health issues with worrying about future issues due to to the radioactive exposure. Thank you again for your help!mdpw715March 22, 2018 at 3:35 pmPost count: 12
I have another question and update. First, thank you for the help for my eye appointment, I’m very thankful that so far, the Graves has not effected my eyes. The question, I have decided to go with the TT instead of the RAI. I’m seeing a lot of information about post operative issues…a lot of weight gain, calcium problems, depression, lack of energy and excessive tiredness in spite of a full night of sleep. Can anyone tell me what they experienced after TT surgery?
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