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My endocrinologist and I came to an agreement for me to have RAI within the next few days as I need to get the appointment tomorrow. I have to stop Methimazole 1 week prior to having the RAI.
I have been on Methimazole for 20 months and it has been nothing except up and down. After dropping 5 mg of Methimazole Feb 1, 2012, my levels went from hypo to hyper fast and my endocrinologist does not like using 2.5 mg increments up or down. He prefers to get me on the other side of the fence with RAI or TT. I prefer the RAI option and he did say that this is not necessarily going to be easy and he could not guarantee me a happy life either post RAI or TT even after going on thyroid hormone! First endocrinologist who said that as one who left my area said it is not a big deal and my regular doctor says people have it every day and most do well. I have moderate TED yet my thyroid eye doctor said I’m okay to have RAI and there should be no problems post RAI with my eyes as I will see him afterwards. I also will be tested at least every 3 weeks as my endo said maybe by 6 months I’ll be on the amount of Synthroid I need to be on; he said we’ll see how you do with Snythroid as I told him I’m prone to allergies and he said that yes some are allergic to the dye in it.
I would just like to hear how others who have had RAI have done. I’ve not had a good time on Methimazole and even though I’m going hyper again I’ve not lost the weight I’ve gained on Methimazole which is really weird and my heart rate is not fast like it was when this started back Summer 2010. Yet I’m having other symptoms like insomnia and shaking and my Free T4 and TSH are in hyper ranges again; not my Free T3 though.
I hear a lot of stories about excessive weight gain and eye problems post RAI.
Thank you in advance for any input. I do hear a lot of not so great stories on some other sites on the Internet yet I do appreciate honest opinions.
I’m very interested in hearing the responses to the above question. I am very new to Graves Disease. A dear friend was diagnosed recently. She wasn’t able to take the regular medications due to allergic reations. So her doctor has scheduled her for RAI next week. However, the doctor hasn’t given much information other than what time to be at the hospital. Any information would be helpful!
For what it’s worth I know of one person who had RAI and a relatively smooth path to getting the right amount of supplement to feel normal. Her thyroid was not a big issue in her life that I heard of as she aged and other health issues came to the fore. So it is possible for it to work out.
That said you sound concerned about doing RAI and not so happy with your endocrinologist. Is this a decision you feel good about? You can always delay or switch to a different doc and do it later. Remember you are in charge!
I think the main focus of your issue should be that the antithyroid drugs didn’t work to control your thyroid hormone levels. So, you have continued to be ill, at some level or other during a lot of the past two years. That really isn’t good. So trying another approach makes ultimate sense to me.
With you having some level of TED already, did either of your doctors discuss putting you on a short course of prednisone around the time of the RAI? Not everyone can do this, perhaps, but it is thought(by some physicians) that it adds an extra layer of protection for the eye disease when we are doing RAI. One study has suggested that about 16% of people who do RAI experience a “temporary” increase in their TED symptoms after RAI. Other studies have not, however, duplicated those results, so whether it is still considered an appropriate guide.
I did RAI (as did my mother), and I am quite pleased with the results. It gave me back my health. It gave my mom her health back. I have had occasional “blips” in levels, which are easily adjusted with the replacement hormone. My mom was on one dose of replacement for about thirty years with no blips that I ever heard of. I think replacement hormone works just fine. And it doesn’t bring with the the array of potential adverse side effects that other drugs do. It is chemically identical to our body’s own T4, so the body is designed to use it, without creating toxic by-products, as with other drugs. The “side effects” listed in the drug manuals, if you notice, have to do with “being” hyperthyroid or hypothyroid while on the replacement. If you are on too large a dose, you will experience hyper symptoms at some level or other. If you are on too small a dose, you will experience hypo symptoms (increased hair loss, for example). If you are on the appropriate dose, these symptoms go away. It does take time at the proper dose for our bodies to heal from whatever was out-of-whack when we were hyper — or undergoing hormonal roller coasters — but over time, it works well.
As for allergies to the dyes or inert products in the pills. While that happens occasionally, it is rare, and not life-threatening. They can make the pills without dyes. And there are different brands of the replacement hormone that use different “fillers” to make the pill. I have heard that people who are lactose intolerant sometimes have a problem with one of the replacement brands. But there is another brand that contains no lactose. So, typically, it can be worked around. It might be necessary for you though to stick to a brand name rather than utilize generics, if you find that you react to some of the pills, but not others.
I do wish you good luck with your treatment. I hope you find yourself feeling much better over time.
I thank you both very much for your responses!
Catstuart7 I am concerned yet not as much as I was back 20 months ago when I started this journey. My doctors wanted me to do the RAI back then. I’m already getting hyper symptoms back and not feeling so great. I want to get off this Methimazole rollercoaster. I know some say with this disease we have one problem and then we trade for another, hypothyroidism. Well even my doctor said that. I have been to so many doctors and I’m so tired and just want to do something to get on with my life as I’ve not been living life being so up and down. My current endo said that this up and down on this medication is not good for my body. I did not feel as good about my endo in my earlier 2012 visit yet with my recent visit I felt we had much better communication and I got my answers which helped me make my decision. I appreciate your input also about the person you knew who had RAI and it went relatively smooth!
Bobbi, you are absolutely right; the first approach did not work for me so now I need to take another approach.
Well my endocrinologist said if my thyroid eye doctor wanted me to take steriods pre-RAI he would have told me to. My thyroid eye doctor gave me the green light to take RAI and see him a couple months post RAI. I’m fortunate, he is one of the best eye doctors in this country as I found out recently, who specializes in TED. Thank you for your input about the percentage re: TED symptoms possibly increasing post RAI. I’ve done a lot of research myself on TED and RAI. I’m not in an active phase and had TED symptoms prior to even Graves coming out in Summer 2010 and my thyroid eye doctor explained the phases of TED, active and inactive and also gave out percentages to me. I get nervous because I hear a lot of negative stories post RAI with TED yet the people I know in my town who had RAI, did not have eye issues and a couple of them smokers and one with a very high dosage of the I-131.
I am glad you are happy with your RAI. I appreciate your comments regarding this RAI issue. That is exactly what my doctor said is what you said if you are on an appropriate dosage of thyroid hormone post RAI, you won’t experience those symtpoms, hyper or hypo. He wants to keep my TSH around 2-3 and of course other levels Free T4 and Free T3 in a good range. He did say it will take time and well said more time with RAI as with the TT I would have gotten on a set dosage of thyroid hormone right away. He said don’t expect things to be wonderful until you get on the right amount of thyroid hormone and you start to balance out. He even said that I cannot guarantee you a happy life post RAI or even post TT if you had that; my other doctors were more reassuring that things would work out just fine. I liked his honesty and he said remember that do not blame every problem post RAI on thyroid once you are balanced. I am also in a stage of my life starting to go through changes as I’m in my early 50s and like my one endo who I loved who left my area said, I have a double whammy! I liked that my endocrinologist is going to test me frequently post RAI, like every 3 weeks, that he was honest with me and that he did not push either the RAI or surgery as he said a lot of people do well on Methimazole yet I’m not one of them, and that I needed to make some decision. I also read something interesting by an MD in the book “The Complete Thyroid Book” that if we did nothing with our Graves that the thyroid would eventually burn itself out and of course he said this is definitely not advisable at all because no treatment means we would not survive in time yet it is almost like well it’s either now or later as I realize even if I went on the lowest dosage of Methimazole, I’m tired of having hopes that I’m going to go into remission and hoping now with my decision that I will get my life back once I get evened out post RAI.
I also know life is full of risks and there area no guarantees with decisions we make.That is good to hear about the dyes, Bobbi. My endocrinologist said well we will cross that bridge if we get to that as he said there would be alternatives if I had any allergic reaction. I am finding out it’s one step at a time with this disease. I have a tendency to want to put the cart before the horse.
I am glad you had a good experience and I thank you for the good luck and all your input!
People like to spread horror stories of RAI, but I’m living proof that it can work without any major side effects.
I had my RAI in February 2011, so a little more than a year ago. I sent my dog to the sitter’s for a long weekend (took the pill on a Friday morning) and planned to spend the weekend in isolation. The radiologist didn’t feel comfortable giving me such a life-changing pill without personally reviewing all of my medical history, so I had to sit in the waiting room for two hours while my endocrinologist (who had hospital privileges but was not employed by them) faxed everything over. I signed a lot of papers about how this was permanent and about not exposing others to unnecessary radiation, and finally I took the pill. I sat in the waiting for 30 minutes because the nuclear medicine tech said if some crazy thyroid storm was going to happen, it’d happen within 30 minutes of taking the pill. Nothing happened, so I drove home and got into bed simply because I had the rare luxury of three whole days with no outside commitments. You can read my posts about it (just click on name then click on posts) but I think the first day was fine until the middle of the night when my throat started to hurt. By the second night, the pain was pretty bad. I also developed a pretty bad cold because my endocrinologist wanted me on steroids to prevent any immediate eye symptoms, and the prednisone kicked my immune system in the rear end. Sitting in the hospital for three hours exposed me to all sorts of pretty germs, so I don’t think the cold had anything to do with the RAI.
It took me longer than most – 22 weeks/six whole months – to go hypo. I worried that because my RAI was such a small dose (10 mCi), that I would have to go for another round. I was only hypo for about a week and started Synthroid right away. I’ve had to keep dropping my dose from 125 to 100 to 75 and now I alternate between 50 mcg and 75 mcg every other day. We’ll see where my levels are in a few weeks when I see an endocrinologist for the first time in four months (moving and not having insurance for two months was not fun).
All in all, I’m glad I chose RAI. I was pretty heavily leaning toward surgery but the surgeon encouraged me to consider RAI because of a number of factors – I was only 26, I get keloid scars, I wouldn’t have much time off from work, etc.
Staying on ATDs long-term was never going to be an option for me. I was on them for one year (PTU) and remission was just not going to happen and I was pretty sick for that entire year. We kept putting RAI off because of other reasons – switching jobs, travel, strep and pink eye within six weeks of each other (thanks to the second graders in my CCD class), and a neck injury for which I had to take prednisone – and your body can only handle so much prednisone.
Good luck. It sounds like you made the right decision for you.
Gatorgirly, thank you for sharing your story!
I like this forum and the facilitators and comments from people. I had to get off of some other sites because I was feeling horrible from comments.
I plan to go to a hotel. I have a husband and 2 cats and the nuclear tech said to stay away 2 days at least 60 feet from them. I don’t have a large house so it is better I stay away as my cats also hate to be boarded.
My endocrinologist said probabilty of storm is not great post RAI only because I’ve been on Methimazole, antithyroid, 20 months. I had a bad throat after an RAIU scan in August 2010. Thanks for reminding me of that. I hear of others who use hard candy and drink a lot of fluids too. I know the pred has a lot of effects. My eye doctor for some reason did not tell me to go on the pred as I’m happy yet I still have a call into him to confirm this. My endo said if the thyroid eye doctor did not say anything about a steriod, then I don’t need it.
I’m sorry that happened to you with the bad cold.
My endo said average time for hypo is about 6 months and he wants to test me every 3 weeks post RAI. I had another doctor who only wanted to test every 3 months. My endo said we have to be careful not to let you go hypo. Well I liked hearing that.
I know it takes time to get the dosage right. My endo explained that which he said don’t expect perfection for quite a while…some sooner than others.
Sorry to hear about your insurance. It is tough enough having this disease and then other problems might occur.
I had a bad time with another surgery back in 2009 and I just do not want surgery. It took me months to feel better and I’ve already been out of work for 3 years now as the Graves has beaten me up quite a bit and up and down on Methimazole it has been horrible. I just want to be somewhat level again if at all possible and then get to work and put behind me. Plus I care for my elderly mother and I need to be as best I can soon.
I do not understand how I got this first time at 51 where so many people I hear have this disease so much younger. (yet doctors told me I was slightly hyperthyroid for years.) Stats shows mostly 20-40 year old range for developing Graves. I feel bad for younger people like yourself getting this autoimmune disease.
I’m really tired too of being sick and hoping for the best; maybe it will be a silver lining, I don’t know…I probably will get around 10 mCi also as my doctor said 8-15 mCi and the nuclear tech said most of the Graves patients they have average around 10-11 mCi. I really wish now I had the RAI back in August 2010 yet then again I would not have had the chance at possible remission. I was in a bad way in Summer 2010 and never want to be there again as I’m starting to experience some hyper symptoms again on the lower dosage of Methimazole. Tough decision as you know yet I go in being positive as I also think a good attitude, such as yours, is very helpful!
Thank you again for sharing!
Bobbi wrote:One study has suggested that about 16% of people who do RAI experience a “temporary” increase in their TED symptoms after RAI. Other studies have not, however, duplicated those results, so whether it is still considered an appropriate guide.Just a quick note that the original Bartalena results *have* been replicated, although not in every single study that has been done on RAI and eye complications.
The original study was Bartalena, et. al. (1999) that found a 15% risk of worsening eye development for patients undergoing RAI, versus 4% of patients on ATDs and 0% of patients who used RAI in conjunction with steroid therapy. (Of course, steroid therapy comes with its own risks).
Traisk, et. al. (2009) noted that 38.7% of patients had a worsening or new development of the eye disease following RAI versus 21.3% for Anti-Thyroid Drugs.
However, another study (Perros et. al from 2005) concluded that RAI was not a risk factor for patients with “minimally active” eye disease as long as hypothyroidism was prevented with early administration of T4.
The American Association of Clinical Endocrinologists and American Thyroid Association came out with some guidelines last year on the treatment for hyperthyroidism, including for patients with eye involvement. You can access the full guidance here; 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.
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).
http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf
Hi Beach…I have decided to copy/paste a post of mine from 2009 about my battle with Graves. It’s been almost 3 years since I had it done and I wouldn’t trade it for the world!
Hello Everyone!
This site is wonderful! I’ve been lurking for a while. Reading stories and decided to join and share my story. In a nutshell, I was diagnosed with Graves Disease with a nodule/goiter (thru the uptake and scan) on my thyroid about 2 ½ years ago. When I was diagnosed, they told me that I would need a needle biopsy on the nodule to see if it was cancer or not. Hmmm….needle? Ummm..biopsy? Wow..how did this all happen!! Since I absolutely HATE needles, just hearing NEEDLE alone was enough to make me want to crawl under a rock and die! After I went home and cried, I decided to read up on thyroid cancer and Graves disease and educate myself. I went for the biopsy which was one of the worst experiences I’ve ever had, I’m not gonna lie. Any of you that have had it done, I think, can identify with the uncomfortableness (is that a word?) of this procedure. Thank God the nodule was BENIGN! After that was my next step…deciding to take meds or do the RAI treatment. Honestly, the RAI treatment kind of scared me in the beginning so my endocrinologist said that he was going to put me on methimazole until I decide what I want to do.
Two years later…I decided on the RAI treatment. Basically, after they took me off the meds, I did not go into remission, in fact, I was a mess again! I thought, this is it, I’m getting the RAI done and my endo also said that the medicine was hurting me more than it is helping, which I agreed upon cause I was always sick (low immune system) and never, really felt RIGHT since I’d been on the pills. Now, I told you all that, to tell you this, the RAI treatment was the best thing I’ve ever done in my life! I had it done July 17th of this year and became EXTREMELY HYPO by mid Sept or so. I was having cold sweats like every half an hour, my blood pressure was extremely low, I was fatigued, extremely tired and sluggish. I told my husband that I felt like the walking dead! Hahahahaha! I went to endocrinologist and she immediately put me on Synthroid. Apparently, my TSH levels were 84! I asked her where my numbers SHOULD be…she said between 1.1 and 4.8! Holy cow! No wonder why I feel like I’m ready to go into a coma! Hahahaha! Even though all of these things happened to me, all I could think of is, “I would rather have this happen to me than having heart palpatations everyday…ALL DAY!”
There’s a little run down on my battle with Graves. Right now as we type, I’m on my 3rd week of Synthroid and I feel like I’m getting better everyday. Granted, I’m still uncomfortable and not normal, but then, who REALLY IS normal? Hahahaha!
Nice to meet everyone! (hmm..that was a pretty long nutshell, wasn’t it?) hahahaha!
~StacyBeach45,
Not sure if you read my posts, but I struggled with the decision myself. Gatorgirly’s story convinced me to go the RAI route. My endocrinologist and hematologist both told me to go with RAI. I did it on Tuesday and so far so good. I was so freaked out about intentionally killing my thyroid. The whole radioactive thing is kind of scary too. I am on day three of captivity in my house.
I received a much higher dose I believe because my uptake was not that great. My hope is that I did not make a mistake and will now have eye issues that have not been present so far. Sometimes I think I may have jumped too soon on this. I was diagnosed this month and treated already.
Good luck to you. I hope you stay in a nice hotel. The distance requirement they gave you seems extreme considering what the guidelines say. I miss my dog and my cats are not happy that I am dodging them. Thankfully they sleep 18 hours a day.
Ready to hit the gym soon when this is resolved.
Oberon
Well thank you all for the great responses.
This guide is wonderful Kimberly. When I view my report and remember what the thyroid eye doctor said in January 2012, that I am not in the active phase and that RAI is fine without steroid therapy. My endocrinologist wants to catch me also ahead of time before I start really going hypo. I’ve seen all kinds of information on this though and differing opinions from MDs. I like the table in the thyroidguidelines regarding the eye involvement. I realize I have to also trust the eye doctor when he said that RAI is safe for me and did not say I needed a steroid for protecting my eyes. I’m still kind of nervous because I hear of some people having problems with their eyes post RAI; I also do acupuncture every other week which seems to be helping my one eye that was more of a problem. Yet when I look at these guidelines, I do not feel that I would actually need the steroid treatment for my eyes. Thanks for the stats and the guide Kimberly.
Wow StacyQ that is some story. Glad that the nodule was benign.
Sounds like my story as I have not felt well 20 months on Methimazole. I had that cold sweats when I went hypo pretty bad on Methimazole. Now going back hyper on this medication decrease I’m feeling hot all the time again. I will be checked pretty frequently post RAI like every 3 weeks with blood testing. My endocrinologist would like to keep my TSH between 2-3. I have heard of the TSH levels shooting up really high post RAI. My doctor did not tell me to look for any signs of hypo yet I already know having somewhat experienced some of that myself and also reading a lot of information and listening to people like yourself. Those palps were not fun! I’m kind of scared yet I know that in time things should start looking up. It sounds like you did really well overall and that is wonderful. Glad you are getting better each day as another success story. I know what you are saying about normal; what is that is right! LOL! Thanks for sharing!I did read your posts Oberon. I know it was a struggle and I struggle too yet I am really against surgery yet not big on this RAI. I’ve heard a lot of good stories from people though post RAI. It must get boring to be isolated. Yet I know they need to do that precaution for protecting others. My cats are not going to be happy to be away from their “mom” with my husband taking care of them as he does not like the one and spoils the other (they’re brothers). I can imagine you miss your pets and my cats would be totally crazy if I was staying here and dodging them. I don’t really want to go to a hotel yet there is a really nice one not far from my home. I wish I had been like you back in August 2010 and taken the darn RAI back when I was with this endo who I liked who since left my area back in Spring 2011. She did not understand why I was just not wanting to do it as she just did not feel that Methimazole was going to work for me; she was right. I would imagine from talking with others that it is the best part when finally the crashing down to hypo is caught and get on the right amount of thyroid hormone. I remember when I went very hypo on Methimazole Winter 2011 my mother did not understand why I was so unmotivated and just in my own world as then I had a blood test and the endocrinologist said, oops you are very hypo and we need to cut back on your medication! Plus I was getting cold which I must have been slightly hyper for years as I was told because I have always run very warm and even when I was very thin. I wish you much luck Oberon and please keep us posted! Thanks for sharing!
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