Viewing 15 posts - 1 through 15 (of 18 total)
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  • Bobbi
      Post count: 1324

      Hi, and welcome to our board.

      I do understand how scarey it is to comtemplate RAI. I found it a very difficult decision to make, even though I had the example of my own mother who had done it about 25 years before me, and it made her well again. I was, more or less, driven to RAI because I had a bad reaction to the antithyroid meds. I still quibbled for a while.

      All of the information that we have says that RAI does not impact future fertility. Wonky thyroid levels do have an adverse impact on fertility. Studies have also shown that it does not lead to any statistically significant increase in birth defects, either.

      You are currently in a situation where the devil that you know (hyperthyroidism + antithyroid meds) is more comfortable to you than the unknown of either RAI or surgery. But hyperthyroidism is the WORST option for you in terms of fertility and long-term health. Studies have demonstrated that even minor levels of hyperthyroidism over time are horrid for long-term health. So, if the antithyroid drug isn’t working to control your thyroid hormone levels in the normal zone, you really do need to consider the other options.

      I assume you have talked things over with your doctor. If you have not, that is going to be your best source of information. If you do not trust your endocrinologist, get a second opinion from another one.

      Wishing you well,
      Bobbi — Online Facilitator

        Post count: 2

        Hey guys….I’ve had Graves for 2 1/2 years now but have just found you and am so glad i did. I was diagnosed 3 months after my 21st birthday. we i went to the hospital they swore I was having a "panic" attack. but I insisted they check further as I have a long family history of thyroid problems including an uncle and cousin who both had Graves. Long story short I was put on propranolol and methimazole. My last blood work was 3 months ago and still my T4 is 2.32 and my TSH is .004 and no that is not a mistake it is actually that low. I am interested in the radioactive idodine but fear the possibilty of it leading to infertility. Any advice there? I just had to talk to someone. For me and I’m sure for all of you as well, it is so difficult to have to give up the things you once loved because of the is stupid disease. I cant have children right now obviously and the long term effects of this thing doesn’t look good either. I know my family wants to help but they don’t fully understand how scary this can be. Unfortunately i did not have insurance when i was diagnosed and therefore none of my new insurance companies will cover it. This is the main reason it has drug on so long. Does anyone have advice/support? Is there anyone who knows what I am going through?

          Post count: 2

          Thanks for the reply. Although i would not wish this on anyone it is nice to know i am not alone.

            Post count: 32


            I’ve read with interest all of your posts. I seem to remember that you mentioned (I’m pretty fuzzy right now – so if it wasn’t you – sorry!! <img decoding=” title=”Smile” />) that you wouldn’t choose to do RAI now. Did I misunderstand?? But if that was you, why would you do something different?

            Thanks for the answer – I’m still trying to decide myself.


              Post count: 1324

              Hi, Lynne:

              No, that was not me. I would indeed do RAI again. And Ski has done it twice, because her first dose was too small to be effective. I think I remember seeing the post you are asking about and, if my memory is correct, the person who wrote it is DianneW. She has had a particularly grueling battle with this disease.

              Bobbi — NGDF Online Facilitator

                Post count: 211

                Omg, this goes to the original post. I am 23 about to me 24 and I was just diagnoes like a month ago but had it for at least a good solid 1.5 yrs. My levels were 1.0 and .002 I know how you feel. I was put on propanolol and got jaundice then I was put on tapazole and it gave me severe shakes/low blood sugar. I am now on PTU and no beta blocker because they actually speed my heart rate up (weird). I take two pill every eight hrs and for over a week now and still feel as if I wasn’t taking anything. I am to the point where my social life, college career and job are at any point going to collapse. I am always tired, anxious,and feel out of loop. I get these bouts of extreme energy than I crash. I was just wondering what your journey has been like. We are the same age so i would really like to get your story from a-z. I was freaking out when I read your post because I was in and out of the hospital and all they said was your having panic/anxiety attacks. My dr then looked over my blood work for a year and thank God her partner foud it when I went into her purely by mistake. My thyroid has a 2cm nodule on it and is 5x its size. please respond back with ur story from day 1 to know. My personal email is Also if anyone else wants to email me with any tips advice stories or current personal issues I am open to anything.

                  Post count: 2

                  That is interesting, when I was first diagnosed I was at .004 too, which really is extremely low, but my symptoms were never as bad as the things I have read about. I got tested 2 months later and my TSH was at 4.0%. This was within the normal range which allowed me to be off PTU for almost a year when symptoms started coming back and just got tested and TSH at .44%. I guess my point is these numbers can really fluctuate, I don’t think I am in a position to give medical advice, but personally I think it is important to pay attention to your symptoms and not do anything drastic based on TSH results, unless you are being tested every month or so and it stays that low. Once you decide to go with RAI there is no turning back, I think, if you are experiencing very bad symptoms that are making your life difficult it might be a good idea to do it, but if you haven’t had much difficulty since the panic attack, try and relax and go with the wait and see approach and try to get more opinions from a few endocronoligists before you make a final decision.

                    Post count: 1324

                    Actually, joe is not completely correct. While it is important to listen to your body, you cannot rely on your interpretation of how you feel to dictate your treatment. AT some point in time, objective facts have to carry the most influence. The TSH results are crucial for determining whether or not you are hyperthyroid. And the TSH moves very slowly over time: the TSH is like a "running average." Actual levels of thyroid can fluctuate like mad: the TSH is the "steady Eddy." And it has been demonstrated over time that even minor levels (perhaps the technical term is "subclinical") of excessive thyroid hormone provide a serious threat to long-term health.

                    Bobbi –NGDF Online Facilitator

                      Post count: 18

                      Although I can’t answer for myself, I can let you know how my daughter is — She is 3 was diagnosed with Graves this past October. She was/is restless, unable to sleep, itchy, with a fast heart rate. At times she seems anxious. We sought 2 opinions of her Graves with ped. endos and decided on RAI for her treatment. She had the RAI in mid-Nov and I think now, is doing much better already. She is not as "up-tight" as before, for the most part her itchiness has subsided, and she is sleeping much better (like a normal 3 year old should be).
                      Her ped endo (which we absolutely love) talked to me in detail about future fertility issues. According to the Dr. she shouldn’t have fertility issues after having the RAI. Her Dr. also talked about her fertility if we chose meds. Her Dr. felt that she would have more issues with fertility with the meds, due to hormone fluctuations possibly causing a remission in her Graves. (hope that makes sense)
                      Regarding your insurance — aren’t you able to appeal the insurance company to get them to pay for some of it?
                      We are in the midst of an appeal with our insurance company. They claim my daughter is too young to have all the thyroid blood tests done so frequently.
                      I wish you well.

                        Post count: 1

                        Hello! Everyone in this blog. I have so many questions regarding my thyroid disease. I just barely diagnosed with overactive Hyperthyroidism in june of 2008. I hate drinking pills everyday. I go throught lots and lots of depression, mood swings, and most of the time i’m super tired and lazy. (I cant seem to cope with my disease yet) Any suggestions on what activities a should do and should not do. I get to much stress from my work!!! Any ideas please help i’ve became too intolerant even with my own children.

                          Post count: 84

                          I was diagnosed with Graves about a few weeks ago. It was my hand tremors that sent me to the doctor.

                          My Mom died of ALS (Lou Gehrig’s Disease) in 2006, so when I noticed my hands shaking in the office (and everyone else), I decided to go get checked out, thinking I had Parkinson’s (since it’s related to ALS).

                          The doctor wondered about the Parkinson’s too, but he happened to have done bloodwork with my physical and called me a few days later to say I had an "overactive" thyroid and needed to see endo for it and he referred me to one here in Austin, TX.

                          In the meantime, he put me on some beta blockers to calm my heart since my heart rate was in the 90’s – which I hadn’t noticed.

                          I guess everything that was going on with me had only been going on for at least 6 months or less, since I hadn’t noticed anything but my hands shaking. But I did noticed I was more lazy and got tired easily, and had mysteriously lost about 20 pounds recently – even tho I hadn’t changed my diet or anything! Which I thought was cool, since I’m a little overweight!

                          So I went to see the endo and she re-checked my bloodwork, and also told me about RAI and told me it was safest way to treat Grave’s disease. She said surgery was the "old" way and too invasive, and then the pill way was no guarantee and I also could end up with liver damage.

                          Before I went in for my scan/uptake this week I read all I can online about RAI and also talked to a few people – including a co-worker who also had Graves. She’s had the RAI three times!

                          This was all 20 years ago for her (she’s in her 60’s), but she had it the one time and a few years later I guess it came back. So she went to do it again and an internist I guess who didn’t know any better, gave it to her once and then a second time 2 months later and she ended up having a thyroid storm and was in the hospital for a week to get better.

                          But even after all of that, she STILL recommended the RAI for me.

                          So, that was what I did. I did the RAI yesterday. Apparently my scan/uptake showed at 60% of the iodine they had given me, and I was prescribed 10 millicurries of the RAI. So I popped that big blue pill and downed it with a big glass of water.

                          It’s now the next day and I feel fine. All day yesterday I was waiting for any ill effects – and there were none. I just hung out on the couch drinking sodas all day, watching DVDs and felt as if I never even took it!

                          I did take my steroids they gave me, so maybe that helped.

                          But I do feel as if stress brought it on. I bought my first house this year in April, and also the job I work – as a trucking company dispatcher, is stressful, especially right now with the recession going and all of us hoping to keep the doors open and our jobs!

                          But I also found out that my brother had something about his thyroid come up in his bloodwork with his physical earlier this year, but he didn’t think anything about it and changed his diet and started exercising. I think his Hypo.

                          Anyway, I’m female and 43 – just in case anyone wondered. I’m glad to be a part of this board and to share my story! :mrgreen:

                            Post count: 1324

                            Hi, Mickey65, and welcome to our Board.

                            Just fyi — you might experience a sore throat in the next few days. And, in about a week, there may be an increase in hyperthyroid symptoms. This is a normal result of damaged thyroid cells dumping their stored supplies of hormone into the body. They are no longer making "new" hormone, so this extra period of hyperness usually does not last longer than a few days.

                            I hope you are feeling much better soon.

                              Post count: 84

                              Hey Bobbi – thanks for the tip there. I’m on day two of the RAI, and so far I feel fine. My throat feels a bit "full" right now, but no soreness and my saliva glands are working just fine.

                              I guess in 3 weeks I go back to see my endo to figure out what to put me on. Synthoroid (sp.?) or Armour? I think she does the Synth one since I saw a few things in the office promoting it. I’ve heard Armour is better since it’s natural (made out of pigs!)? :shock:

                              Anyone got any ideas of which one is better?

                                Post count: 1569

                                Hi Mickey,

                                Armour is generated from pig thyroid tissue, and so is thought by some to contain more of the elements we miss without our thyroid. One thing for certain is that it contains a bit of T3, the active form of the thyroid hormone (which our body typically generates FROM T4, the main component in our replacement), and in some cases that is helpful for patients. In other patients, they experience sensitivity to the T3 over time, so it doesn’t work so well for them. In most cases, our body is just fine at converting T4 to T3, but in some patients ~ such as those who may have liver dysfunction from other sources ~ a T3 supplement can put everything in balance. It’s something you may want to discuss with your doctor right away, before you begin taking one or the other. It is a fairly long process, "dialing in" your own personal "correct" thyroid hormone level, and replacements are NOT the same (generics vs. brand vs. Armour, for instance), so you can’t say that a particular dose of one is exactly equivalent to that same dose of another, that your body would end up at the same thyroid hormone level as a result. For that reason, it is not recommended that we switch brands, unless we are experiencing some sort of reaction to the elements of the pill that are "filler" (we could not be allergic to the thyroid hormone itself, it’s simply not possible), so picking one over the other right away is a good idea. At least find out what your doctor’s recommendation is, and why.

                                One thing ~ you may not be going on replacement hormone so quickly. You may not have slid into hypothyroidism yet. It can take a while ~ usually at least six weeks before the excess thyroid hormone is even completely out of your bloodstream, and then you may begin to see your overall levels change, but probably not before your next appointment, in all likelihood.

                                We’re glad you found us! Welcome. <img decoding=” title=”Very Happy” />

                                  Post count: 84

                                  Thanks for the info, Ski. I’ll be sure to keep that in mind when I go see my endo. I guess I’m afraid of blowing up with extra weight.
                                  And also still being sick.

                                  I’ll see what comes of it all. <img decoding=” title=”Wink” />

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