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in reply to: Well, here goes! #1173484
I think you are mainly radioactive at your neck and in body fluids after the RAI. So you won’t contaminate your veggies washing and cutting them by hand. At least I don’t think you will!
I will stay home with my cats after RAI because the vet wasn’t worried about them very much and I haven’t received any guidelines from the hospital either. They are going to get a call from me on Tuesday! I will stay in another room and I won’t let my cats sleep with me for 3 nights.
I am going to eat seaweed after the RAI to increase my iodine. Iodine factors are believed to be a major cause of thyroid diseases.
Good Luck on Tuesday! xoxo
in reply to: Dependent on Hormone Pills #1174119Um interesting info from everyone! I didn’t know about the possible connection between oil and medication, Pale Blue. I have no fear right now about the availability of the hormone replacement. I guess my fear is in 20 or 40 years from now, I don’t know what the world will look like. I am not going to presume it will look the way it does now. I think it is an irrational fear today(and I have absolutely no fear of its availability now), but I don’t know if it is such an irrational fear in the future.
Gatorgirly, that is a great idea! I don’t wake up at night, but I am planning to take the pill at night (if I can bring myself to do this RAI!)
Happy Long Weekend in Canada/US!
in reply to: Dependent on Hormone Pills #1174115Well, it is a factor to consider for myself. I am reading how this replacement hormone can’t be taken with vitamins and needs to be taken on an empty stomach. Sounds like a real pain in the butt every day!
When I went to Africa last year I was in remission. I spoke to my endocrinologist before the trip. I asked about the likelihood of coming out of remission in the 5 weeks I was going to be away. I had my blood tested before going and the endocrinologist gave me a prescription for Tapazole even though I was in remission, to take with me on the trip. I had some medication in my purse and some in my suitcase, in case of theft. Out of country medical insurance doesn’t cover pre-existing conditions, so seeing a doctor for Graves’ would probably be pricey.
Sounds like it will be the same procedure now to travel with Synthroid.
Yes I am in a big earthquake zone. We will have a subduction earthquake just like Japan, but we don’t know when the next one will be. They happen about every 300 years and it has been 250-300 years since the last one. We had an earthquake on Wednesday. The sound terrified me, like a freight train. I had never heard an earthquake before, but we live at the epicentre and I was home at the time. I thought it was an explosion. The shaking didn’t bother me as we have many earthquakes a year.
Thanks for the info Kimberly! I want to move to Morocco and I know a guy there who had a complete thyroid removal , so he is on hormones. Morocco is more 2nd world though.
I hope this stuff, hormone replacement isn’t expensive? Under my disability I don’t pay for Tapazole and beta blockers. I won’t for these hormones either, but when I return to work I might have to pay for them.
I just feel in my gut I am making the wrong choice to do RAI. I am trying to come to terms with my decision to do this!
Happy Weekend Everyone!
in reply to: question on treatments #1174013I have had 3 endocrinologists, all of them not supportive of drug therapy. They all preferred a more permanent fix to Graves’ with surgery or RAI, since I was told hypothyroidism is easier and safer to control.
Now I have had Graves’ 3 times and agree with the permanent fix idea. The problem was I never tried the long-term drug therapy, more than 2 years, since I didn’t know about it. I was at high risk to come out of remission which I have done 3 times. Everyone is different but I know of 2 others patients who were also pressured to chose a permanent fix and not try drug therapy. I guess it depends on where you live.
in reply to: Loss of Taste and Smell After RAI? #1174004Not sure the name of the website. I didn’t see anything for sale, but I wasn’t on the site that long. I think it was a bogus website though. Glad to know these symptoms of RAI aren’t true!
Enjoy the weekend!
in reply to: Loss of Taste and Smell After RAI? #1174002I am thinking and hoping the blog I read was exaggerated. She had Graves’ disease and also said her skin peeled from the radiation. I don’t believe that. Maybe her skin peeled from going hypo? I didn’t post the article link as I wondered if it was inaccurate. I am relieved you didn’t have these symptoms!
in reply to: Well, here goes! #1173477I think we are twins! I have had Graves’ for 7 years and relapsed 3 times! My RAI is scheduled for September 7th! My dose will be 14! I also damaged my heart and have been on Bisoprolol (beta blockers) for about 5 years now. I was wondering if we stay on the beta blocker after RAI? I haven’t asked the endocrinologist this yet.
I feel just like you…absolutely nuts to swallow radiation enough to kill an organ in my body. I have refused RAI for 7 years but want my life back and don’t want to wait a year for surgery. I can’t have surgery until my levels are normal which is a real challenge and not expected to happen for a year. I was taking 40mg of Tapazole to get my levels down and last week went down to 20mg waiting for RAI.
The 2nd time with Graves’ was a nightmare in terms of anxiety. My endocrinologist did not discount it at all. I was absolutely crazy and could barely think logically. It was a step-by-step process to think logically. This was the weirdest feeling and I was doing my PhD at this time. I had to go on a medical leave.
I hope all goes well on the 4th! Keep us updated!
in reply to: Hypo Might Raise TED Risk? #1173899My RAI is scheduled for September 7th and I was told I could expect to be at the hospital for 2-4 hours. I am supposed to have 14, I-131 with the highest dose for Grave’s being 15 I believe. I opted not to see an eye specialist because this was going to delay the RAI and I just want it over with. My endocrinologist did not recommend I see an eye specialist 1st, he said he would refer me to one to make me more comfortable with the RAI.
I think the endocrinologist said the 1st 2 days were critical in staying away from other people and pets. About 95% of the radioactive 131 leaves the body in the 1st 2 days? I have the RAI Friday morning and have an event to go Sunday afternoon and will be out with people. I don’t plan on cancelling my event Sunday.
Wow Carol. 15 years is a long time to not stabilize! My endo said he would be with me until I stabilized after the RAI.
I am glad some of you told me the pill comes in a weird container. I think knowing about any weirdness now will help me cope at the hospital.
Kimberly, I wonder what the definition of high antibodies is? Mine are 79.8 with normal being below 1.8.
Gatorgirly, I am in pain all over I think from Tapazole. I was on 40mg a day but am now on 20mg waiting for the RAI. I don’t like hard candy but will be buying some in preparation! I trust my endocrinologist and if he feels an eye specialist isn’t necessary than I will wait to see one. I won’t get in until after the RAI I suspect.
Beach, I have 3 cats and am scared they will scratch down the door! I don’t want the expense right now of a hotel or placing the cats somewhere else. Sounds like you had problems on Tapazole too.
Hope everyone is doing okay! xoxo
in reply to: Hypo Might Raise TED Risk? #1173893Wow you guys/gals are so awesome as usual! I am still reading everything here! I have called my endo asking to see an eye specialist prior to the RAI. Haven’t heard back yet as his office is closed for lunch right now. The doctor put a rush on the RAI and wants it done within the month. It is done at the hospital. I still don’t know what the lady meant about my endo doing it and it wasn’t painful. This doesn’t make sense to me at all.
I have never smoked and I don’t know if my antibodies would be considered very high. They are 79.8 with normal being below 1.8.
Ugh going to the beach! Will read more later! Thanks everyone! xoxo
in reply to: I need help in Canada #1173270Hi Naisly!
I live in Victoria! Are you on the island or mainland? I haven’t found better online info than what is on this forum. Also I have received a ton of support here…way more than I did in person attending a fibromyalgia support group in North Vancouver years ago! As many people say, this forum is awesome!
I have a great endocrinologist who I saw today! I have had Grave’s 3 times now and have had 3 endocrinologists all on the island, 2 in Nanaimo and 1 in Victoria.
I just booked for RAI today after seeing the surgeon and deciding against the risks. Also I can have the RAI within the month whereas surgery would be probably a year away and the Tapazole really bothers me since I take 40mg a day. I want off Tapazole and I want my life back!
Private message(pm) me if you want or write on the forum and pm me so I know to have a look! I hope you are doing okay! xoxo
in reply to: Went to Blood Analysis Today #1173465Just got all your replies! Thanks! Yes I am starting to wonder about this natural ‘doctor.’ I will definitely stop hitting my thyroid on both sides to wake it up! I even told her it is awake…too awake!
I am just talking with my mom about how I addressed Grave’s disease while in the ‘doctor’s’ office. I am pretty sure I said Grave’s disease, which shouldn’t easily be confused with hypothyroidism?
I don’t know the status of her other Grave’s patients. I know of several people who have been helped tremendously by this natural doctor, so I had some confidence with her advice. I don’t know of a patient that she hasn’t helped. And she does muscle testing to determine what product a certain person should take and at what dose.
Will keep everyone posted. xoxo
in reply to: What my surgeon said #1173147Hi Caro!
I think it is the same antibody test! http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
They don’t use it much here. I think the test is expensive and it takes a couple of weeks to get the results back. For me, it was sent to Vancouver and I live in Victoria, on a big island near Vancouver and Seattle in Canada.
Since they don’t advocate for remission here my 3 endos have never given me info about remission. Are they more supportive of remission where you live?
Keep us posted too! Take care of yourself! xoxo
in reply to: What my surgeon said #1173145Oh I have lots to learn too! The only antibody that I have had tested is called TSH Receptor Ab. I don’t know if this is the same as TBI? I have had 3 endocrinologists and my old results are with them, so I don’t know numbers. My latest one is online so I have that one. It is 69.8 with normal being below 1.8. I was on tapazole when I was tested so don’t know the number before medication. I am not a good candidate for remission because I have come out of remission twice and my thyroid is quite overactive. I have never been hypothyroid. I damaged my heart the 2nd time with Graves’ and I think my mom is upset because I didn’t get the RAI after the 1st time. The endo told me my chances for remission aren’t good with two failed remissions and having Graves’ a 3rd time. I am still leaning toward the surgery. Not sure yet though. I go on holidays on Saturday and probably won’t be making any decisions until I come back the middle of August!
in reply to: What my surgeon said #1173143Oh My Gosh…all your responses have helped me so much!
Gatorgily, this is how I felt but didn’t even realize it until you said it! The surgeon was questioning why I wouldn’t do RAI, but in a nice way, I think he just wanted the facts. Yes I was in remission for about 4 years the first time and only about a year the 2nd time. I love the new info on remission which includes taking small doses even while in remission. I wish I had of known about and tried this method. I am not a good candidate for remission with my thyroid quite large, high antibodies, and the disease is quite aggressive as I am on 40 mg of Tapazole a day.
Snelsen, yes I have the concern with the precautions. If the radiation is safe for me why are there precautions for others? I have 3 cats and no place to stay really but at home if I had RAI. I have never been nauseous after surgery but one time after lung surgery I woke up trying to get off the bed and I was screaming. It was like a nightmare. I don’t know what I was given.
Sarah, he has done many surgeries including many this year, but most are for cancer patients, not Graves’, since RAI is the most common treatment for Graves’. I read about the surgeon before going to see him and he is a top surgeon in my city. He graduated in the 90’s I believe from Univ of Toronto, a top medical university in Canada. The hoarse voice would scare me!
Hi Alexis! Didn’t you just have surgery? I will look back at your posts when I have more time. I have had 5 surgeries, 4 being quite major requiring long hospital stays. I guess after the ultrasound and CAT scan the surgeon will inform me if I am a good candidate for surgery.
Hi Caro! I am thinking of remission again too. If my mom found this out she would wring my neck! I have had the problem where the disease came back so quickly that I didn’t catch it in time and it got out of hand. In the spring I had pneumonia and blamed the weakness and fast heart rate on my lungs. I didn’t catch the Graves’ for another month. Doctors here at not very supportive of people who chose remission rather than a treatment option.
Thank you all so much for sharing and caring! It really helps to talk with people going through the same thing. xoxo
in reply to: RAI or Surgery? #1172998Thanks for this Kimberly! I will have a look too!
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