Viewing 15 posts - 1 through 15 (of 27 total)
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  • VanIsleGal
      Post count: 66

      I am having anxiety about the RAI and couldn’t sleep last night wondering if I would ever find myself in a place where I can’t get the medication or for some reason can’t afford it and I will die. I have been to Africa and Asia where medical treatment wasn’t close by for example. The dependence of being on a medication daily scares me. I don’t like having a dependence on pharmaceutical giants. Theoretically they can stop making the medication I need whenever they want. With these chemtrails in the sky, I no longer trust anyone. We are being poisoned almost daily and our government isn’t protecting us. This spraying is happening in all NATO countries.

      The difference with Tapazole is I know I will go off of it again and it isn’t for life or isn’t a daily thing when in remission.

      I am educated and logical. I am just sharing my thoughts and fears.

      Kimberly
      Online Facilitator
        Post count: 4290

        Hello – I have never heard of a shortage in the U.S. or Canada of T4-based replacement hormone. (There was an issue a couple of years back with Armour, a combo therapy). And if one manufacturer were to go completely out of business, there are a number of brand-name and generic products that could be used instead.

        However, certainly, there are other countries where the supply is not so readily available. I remember a presenter at a past conference stating that subtotal thyroidectomy is sometimes used in third-world countries (as opposed to total thyroidectomy, which is the preferred option), in an effort to try and keep the patient from ending up on replacement hormone, since supply can be spotty.

        With that said, though, I’ve never heard from a patient who had issues getting replacement hormone (other than Armour) while travelling, but if you are ever in a situation where you have to be out of the country for an extended period, advance planning would certainly be a good idea.

        Take care!

        Bobbi
          Post count: 1324

          Here’s some thoughts that might help:

          It isn’t just Graves patients who use replacement hormone . People who have Hashimoto’s thyroiditis use it; people who have had thyroid cancer and had their thyroids removed use it; people who have lost sufficient thyroid function (about 10% of aging adults just to use that demographic) use it. Compare that then to Tapazole, which is only used for hyperthyroid patients. The “market” is obviously bigger for replacement hormone, hence the likelihood of a pharmacy giant stopping it due to limited market is not great.

          I think whether or not you stay on the antithyroid drugs or remove your thyroid and go on replacement needs to be decided on realities, not fears.

          adenure
            Post count: 491

            Hi!

            I just want to say you are not alone. I am dependent now after my TT, but yeah, I’ve had those fears of some insane calamity happening (like the end of the world or a massive earthquake- we live in CA!) and oh my gosh, I can’t get my meds!!!!! Ahhhhh!!!! However, yes, that is pretty much fear based worry. Could it happen? Yeah I suppose so. But, so could getting in a car accident or some other tragedy happen. One thing I did know is that I wasn’t living my life, being healthy or enjoying it being sick with being hyper. So, something had to be done. ATD’s weren’t an option for me, but think about not being able to get ATD’s and being hyper- yikes, that’s just as scary to me. I guess we would eventually die if we went so hypo with no thyroid and no hormone replacement, but Bobbi is right, Synthroid is the 4th most used medicine in the USA. There’s a big market there. So, I think, barring any major calamity nationally speaking (and even there who knows) we’ll probably be okay. But, yeah I get your worries. I have irrational worries all the time- or at least mostly irrational!

            VanIsleGal
              Post count: 66

              Well, 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!

              paleblue
                Post count: 18

                I have these same worries–mostly about our oil supply, and if that gets really pricey b/c of a shortage, we will not have such easy access to meds, or they will be unbelievably expensive. Eventually, medicine as we know it will end because our oil supply can’t last forever, and some think the supply has already peaked–of course there are always the “sky is falling” mentality. Hopefully, the oil supply will peak later rather than sooner.

                Also, on a forum once, and I don’t know how true this is, so maybe a moderator can weigh in, a man said his doctor told him if he was w/out a thyroid, or had completely ablated it, he could live 2 weeks w/out synthroid, but if you have active graves, you could live much longer than 2 weeks w/out meds.

                I have no idea if his information was accurate, but it’s just plain out scary to rely on a medicine. These worries keep me up at night–which is probably not good for my graves. :)

                Bobbi
                  Post count: 1324

                  I realize that we live in uncertain times economically, and many folks are feeling insecure. But to think in terms of “I can live longer hyperthyroid if everything collapses” is extreme. Again, it’s a way of making a decision based on fears or guesses rather than on realities. Try to get factual information to make your decision. And try to relegate irrational fears to a back burner, because the bottom line is that the quality of your life depends upon you making a GOOD choice for yourself. That choice can be antithyroid meds OR replacement hormone, depending upon your situation.

                  If cost is an issue, talk with your pharmacist to compare the costs of antithyroid drugs vs replacement hormone. Based on health plans, pharmacy involved, etc., the costs can vary between me and you, so checking your own resources could be helpful.

                  gatorgirly
                    Post count: 326

                    VanIsleGal,

                    I never had fears of the medication not being available, but I’m a brat, so I was annoyed by the fact that I would be inconvenienced having to take my Synthroid before other medications, four hours apart from vitamins and Tums (I had all sorts of GI issues that began a few months before before I started Synthroid), etc.

                    I have found that putting the next day’s pill on my nightstand with a glass of water makes it very easy. My body naturally wakes me up around 4-5 a.m. on weekdays and 7 a.m. on weekends. When this happens, I reach over, take the pill and a sip of water (not the full glass they recommend), and go back to sleep. Most mornings, I am so asleep when this happens that when I fully wake up, I am surprised when I look over and see the pill is missing. It has become very easy for me to take my Synthroid apart from my other medications. I now take my vitamins and selenium supplement in the evening before bed, and because I take the Synthroid so early, by the time I need Tums (if I need Tums) after breakfast or coffee, it’s usually been four hours or very close to it.

                    So yes, it may be a little annoying at first, but once it becomes part of your daily routine and you get into the mindset that this tiny little pill makes you feel much better than you’d feel without it, it becomes second nature and you hardly think about it.

                    Hope this helps!

                    VanIsleGal
                      Post count: 66

                      Um 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!

                      VanIsleGal
                        Post count: 66

                        Looks like I will be cancelling my RAI! My husband freaked last night reading about the precautions and I haven’t received any guidelines from the hospital. My husband said he wouldn’t come near me for 7 days leaving me alone when I could have a thyroid storm or when I am sick. Plus my doctors guidelines don’t match the University of Toronto guidelines (thanks to AzGuy for this info!) and I am just too confused about the safety of all this radiation for myself, partner and cats. Lots of people knowledgeable about radiation say it is nuts people get to walk out of the hospital radiated the way we are. Supposedly we are already getting radiated (I-131) from Fukushima…I don’t know how true this is though.

                        I read how one is more radioactive getting a high dose of I-131 when one has a thyroid. When people with cancer get I-131 after they have had their thyroids removed, they are less radioactive than a Graves’ patient like myself.

                        Anyway, me and my thyroid are off to the beach!

                        Happy Weekend!

                        Kimberly
                        Online Facilitator
                          Post count: 4290

                          @VanIsleGal – There are plenty of success stories with RAI, some of them regular posters on this forum.

                          One of the comments from last year’s Boston conference that really stuck with me was a thyroid surgeon who said, “don’t let anyone bully you into one particular treatment option.”

                          If you just don’t feel RAI is the right path for you, surgery or another round of ATDs are certainly viable options. But you definitely don’t want to continue in a hyperthyroid state!

                          As for conflicts in safety precautions, this is actually pretty common. That’s one reason that the ATA came up with the guidance that Steve posted in another thread…but if you receive different guidance from your own doctor or lab, that should take precedence.

                          Take care!

                          Bobbi
                            Post count: 1324

                            One thing about the “information” that the medical professionals give us when we are entering into a procedure is to list THE most conservative instructions, and THE broadest range of negative outcomes. It is called “informed consent” and it is intended to cover their rear ends in the event of an adverse situation occurring. When I had surgery a few years ago, one of the things listed was “death.” The thing you need to do is QUESTION the medical professionals. “How often does death occur during a hysterectomy” for example.

                            If you opt for the surgical removal of your thyroid you can make a safe bet that “death” will in fact be one of the possible outcomes. But it doesn’t happen that often. But it would help to find out how often it does happen, so that you can make a well-thought-out judgment. So, if you want RAI (which I don’t hear you saying that you do, but if you did), then you need to ask the person issuing the guidance if that guidance is “general” (i.e. including thyroid cancer patients who get whopping doses of RAI) or specific to your level of treatment. If the recommendations to avoid your husband are because the level of radiation you will be emitting is seriously dangerous, or if this is simply precautionary to avoid him getting ANY exposure to unnecessary radiation. Whatever the treatment option is, we need to ask objective, appropriate questions and get thoughtful, factual responses.

                            I hope you are enjoying your weekend.

                            VanIsleGal
                              Post count: 66

                              Well I read in a medical report that a Graves’ patient who has a thyroid is more radioactive then a person with cancer who no longer has a thyroid, because the thyroid isn’t radiated and radiating everything around them like the bed. It tends to pass out of the body quicker not being taken up in the thyroid. The fact that a dosimeter might pick up the radiation weeks after the treatment makes me nervous. We are told to have a letter in case we travel to the US or another country where the radiation can be detected weeks afterward, we are told to carry the letter for 4 months. Radiation on an individual can be related to bomb making, so this letter is important. I am too uncomfortable to have RAI. I wanted a quick end to this disease but I was almost throwing up this morning just thinking about taking this pill.

                              http://www.thyca.org/ataradiation.pdf
                              http://www.classicboatfestival.ca/at-rest.html

                              Haven’t read everything yet in the replies, but will respond when I have more time!

                              xoxo

                              Bobbi
                                Post count: 1324

                                While it is true that the Graves patient (with thyroid) carries a small dose of radioactivity in their thyroid region for a few weeks, the cancer patient is eliminating the majority of their significantly larger dose of radiation through saliva (kisses), sweat (the bed), and urine for two or three days. Perhaps longer, I don’t know, given the dose that they take how long it takes for them to eliminate it from their bodies. And they do this more than once in many cases.

                                This also happens to us (the saliva, sweat and urine) as we eliminate any RAI that does not get taken into our thyroids. That is why the precautions that we are given often include more safety measures during the first week after taking the RAI.

                                It sounds like you are listening to alarmists, and amateurs, and not your doctors
                                and other medical personel who have studied RAI. Do you avoid dental xrays? Well the dental technician has to leave the room before turning on the machine, after all. Do you fly? (We are exposed to radiation in airplanes.) My point: “some radiation” exposure levels are acceptable levels of radiation, and other levels are not.

                                How much radiation are we talking about? It varies, which is why you might need to ask your doctors objective questions if you continue down this path. Objective question: what can I compare this radiation dose to? You might find that the comparison is totally acceptable to you. Or not. But asking the question can help you make an objective decision.

                                It might help you to understand more of the process. I can give you my example: I was given 8 millicuries, based on my level of hyperactivity (65% uptake — if I remember correctly– in 24 hours) and the size of my thyroid (small). So, after two or three days, 65% of the 8 millicuries should have been lodged in my thyroid, or approximately 5.25 millicuries. So, the next question, would then be what does that equate to in, say, barium upper GI xrays or the radiation I would be getting going through an airport scan and taking a five hour flight, etc. So, if you take your uptake numbers, and the amount of RAI that you would be given, you would have a number that you could ask your doctors to compare to something you would know more about.

                                Then. RAI has a very short life span as radioactive elements go. According to your article, the half-life of I131 (the treatment type of RAI)in a hyperactive gland is 5 days. So in 5 days only half of what made it into your thyroid is still there. So, in my case that would have been two and an eighth millicuries. After 10 days, one and one-sixteenth millicuries would have been left. And so on. I have read that after five or six half lives scientists consider the radioactive element essentially “gone” because there is such a tiny amount left. So, in our case, that is a touch over one month.

                                Having a doctor’s letter if you plan to travel is a precaution. Most of us do not set off the radiation detectors in airports. It totally depends upon the airport detecting system. We are NOT emitting large quantities of radiation. Point in fact: the radiation that we do get has been shown to be safe for us. Study after study after study has been done to look for problems and found very very few. It may not be utterly, completely and totally safe, but what medical intervention is?

                                The bottom line: all of our treatment options are incredibly safer than remaining hyperthyroid. We typically get well again, which does not happen if we remain hyperthyroid. So do consider the pros and cons of each treatment option. Do listen to the advice of your doctors particularly when they give you medical reasons why they think that one treatment option might serve you better than another. But do not fret endlessly over safety issues unless your doctor specifically tells you that one option is much more medically dangerous — for YOU — than another. Some of us have livers that cannot tolerate the ATDs. It is not rational to risk a liver — which we need for life — to save a thyroid (which we do not need). Some of us have underlying heart problems, and it might be much safer to do long-term ATDs than to risk RAI (which causes us to be temporarily much more hyper than normal). Etc. Or surgery. The task is to be as objective as possible. It is not easy to do that, I know, but you will serve your needs much, much better if you can try.

                                VanIsleGal
                                  Post count: 66

                                  What bothers me is being radioactive and affecting others and my environment. I live near rock, fly and I have x-rays, but I don’t walk out the hospital after an x-ray and affect others with radiation. I don’t come home and give my cats a dose of I-131 for weeks afterward like I would doing RAI. Everything you touch in the house becomes radioactive, the toilet, cutlery, the bed, the room and this lasts for weeks. An x-ray is a one second exposure to radiation, with no exposure to your loved ones, this RAI is weeks of exposure.

                                  I called the hospital wanting dosimeters so I know how much radiation I have been exposed to on the outside and my partner wants to know how much radiation he is exposed to. Then we can determine for ourselves when it is time to hit a hotel or whatever. It isn’t recommended to go to the hotel but if it is perfectly safe for me to radiate my house then it is perfectly safe for me to radiate a hotel! Is the radiation equal to 100 trans-Atlantic flights for example? Is it equal to what an x-ray technician is exposed to in a year? This is the information I want to know. Plus I don’t know if I-131 is man-made or a natural substance. I live near rocky land which is a natural source of radiation, but it still increases my radiation dose every year.

                                  The guidelines I read said no sleeping with children (so my cats) for 18 days as a precaution. Well I am not going to isolate my cats for nearly 3 weeks. I haven’t found a good study talking about the safety of pets after RAI. I read how pets receive the same amounts of radiation as humans in the house. This really concerns me…the lack of research for pets on RAI exposure.

                                  Anyway, my RAI is getting cancelled. Too many unknowns for me. And too much guilt exposing others to the radiation when I can’t tell them how much they are being exposed to. My blood is probably normal now (I have blood tests this week) but my TSH has been undetectable for 6 months, it is below .6. My T3 and T4 should be normal after 6 months on Tapazole, 40mg for the last 2 months. So I am feeling okay.

                                  I am in no way criticizing others for choosing RAI. I also question why RAI is so unpopular in Japan and Europe? My husband is from Morocco where they follow the French medical system and I know of a guy there who had Graves’. The doctor sent him for surgery, there was never any talk about RAI. I don’t think he had an RAI option. Do they consider it unethical to expose people to I-131 unknowingly as is the case when a patient takes a bus or is out in public?

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