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Not really a reply, however, my questions would fall under this topic.
I was dx’d with thyroid issues in june 09. They were not sure what was going on, just that something was. I am prior military and currently my husband is still in so we move a lot. We moved in Sept. I went to the doctor in Oct. Dx with Graves in Nov.
I went from feeling crappy but thinking I was healthy in june to now, taking pills and feeling worse in december.My endo put me on 40mg of methimzole (sp?) daily, (nov 3rd) he said that it needed to cool down, I asked for the actual values of my labs, and was told that it did not matter. I have read that 40mgs daily is a pretty high dose. But he said my levels were very high.
He has told me of the 3 options for treatment. I usually trust most of my physicians, as I was a medic in the navy, so I am very familiar with most medical related issues. This issue I am not.My endo doc is going to schedule me for Ablation. He told me that I need to be isolated from my 16 month old son and husband for 10 days. We live in a very small apartment, with one room. When I had my uptake I asked about it and they said that it would be 48 hours max. Which one of them is right?? I could not find any black and white info out there for a definate answer.
The other thing I am wondering about is the actual choice of treatment. The endo doc, has said that ablation is the way to go. He barely touches base on the rest of the options, I basically just know that they are there. Reading all the posts about different treatment, I’m kind of wondering which is the right way.
He never told me about a "dump" or about adjusting the bp meds…. I didn’t even know that would happen. He have me a script for a medicine that I will have to take while I’m off the methimzole (sp?) and that I would have to cut my lisinopril in half, but he said that would be before the ablation and that I would not need anything after it.I look through a lot of these questions and as i have found that not every one person has the same symptoms. Are there some good links out there that can explain all of this in detail? I thought I was a lot more educated about all of this, I guess i was wrong…. it just seems like people are talking about more info then I can find on the web or in my books.
Any help would be great.
Thanks ~hansontrishHi, hansontrish, and welcome to our Board.
First of all, there is no one-size-fits-all "right way" to treat hyperthyroidism. Patients present different, and highly individualized issues, and what may be the best way to treat one patient is not necessarily the best way to treat another.
What a doctor decides might be the best way to treat a patient, depends a lot on the doctor’s experience with adverse side effects, opinion about the safety of certain drugs in women of child-bearing age, the age of the person, the person’s heart condition, etc. etc. etc. etc. ……. A lot of times, our doctors will present us with options, telling us the pros and cons of each, and let us choose. Other doctors are more dogmatic in their approach. It sounds like your doc falls on the dogmatic end of the scale.
You may have options. Is it possible to get a second opinion from another doctor? If you are on the antithyroid drug (methimazole — we call them ATDs here) and it is functioning to keep your thyroid levels in the normal zone, then you probably have time to seek out another doctor to discuss the issues. On the other hand, if the drug is NOT functioning well to keep your thyroid levels in the normal zone, that is a whole other thing. Waiting for another endo appointment might not be wise. A way for you to tell: get that lab report. It is yours. It doesn’t belong to the doctor, or the doctor’s office. I always ask for a copy of my lab work. And my doctors give it to me, without quibbling. We cannot — as patients — intrepret a lot of the results from lab reports. But one piece of information that is loud and clear on those reports is whether or not our thyroid levels are in the normal range. The reports tell us the range of "normal" for every test taken, and where our results lie (either "high" or "low" out of range).
How long do we have to remain away from other people after RAI? There is –again — no definitive guidelines. One person will say "a weekend" while another will recommend a week. Some of the variations are due to the caution of the recommender; other variations may be due to the dose of RAI. The recommendations are given to prevent the people around us from getting unnecessary exposure to radiation. It is very much like making dental technicians leave the room when they turn on your xray machine: the amount of radiation is not harmful all by itself: we get the lion’s share of the radiation, and RAI has been proven safe for us, so the exposure other folks get from us is not likely to be harmful all by itself. But radiation exposures are cumulative over a life time, so preventing unnecessary exposure is important. The smaller the person (or pet) the more likely you are to hold that person, or pet, near your neck and that would lead to radiation exposure. And radiation exposures in small people and pets, particularly, can have a greater effect. So, we are always told to take a few days away from babies, because we cannot tend them without holding them. Older children, spouses, that we can keep a distance from (speaking of feet, rather than miles) are typically excluded from such a ban. My own instinct was to follow the advice of the radiation doctor/tech — i.e. the individual responsible for administering the treatment, and the person most trained in handling those materials. If you go ahead with the RAI, make sure that that person knows your home situation, the age of your child, etc.
The science facts may help you to determine what you think is wise. I131 (the RAI treatment) has a half-life of 8.1 days. This means that after 8.1 days, half of it is still emitting radiation in your thyroid. It is also, highly soluble in water. The effect of this aspect of it means that any I131 that did not get trapped in your thyroid within the first 24 hours is rapidly eliminated from you body via fluid: urine, sweat, saliva. Many times we are told to sleep on separate sheets, flush the toilets twice for a few days, use plastic disposable eating utensils, for this reason. Scientists believe that a radioactive material is essentially "gone" once five half-lives have past. So, the RAI is considered completely gone from the body after about 40.5 days. But, each week the existing amount has diminished by half, and after 10 days (just under your doctor’s estimate) we are, normally able to go about our everyday business without taking any extra precautions for other people. His use of the word "isolate" however is excessive. We do not have to live, by ourselves in a locked room for 10 days.
We have a list of recommended books on the subject, somewhere on the main Home Page (I think). I have forgotten how I navigated to that list, unfortunately. I have read most, if not all of those books, and I think they helped me to understand things fairly well when I was trying to figure out what treatment to do. At least some of them are available in libraries and bookstores, or from online sources. The organization tries to list books that have factual, well-founded information (as opposed to untried speculative suggestions), so I recommend that you try to get one of them.
I hope this info helps. If you have more questions, feel free to ask them.
Bobbi,
Thank you for the advice and information. It did indeed help, quite a bit actually. The science of all of it is somthing I understand very well, and I could not locate that info, so thank you for that. I am usually a smart person and able to problem solve, however, it seems to be diminishing, which I was told could be caused by the disease. Sounds kinda corney, but that was a blessing in disguise, as I was having a hard time wrapping my brain around new concepts and ideas, and an extreamly hard time learning things. It was making school very difficult, and still is.
He did say that the ADT’s (thank you for explaining that acronym) were not keeping things level. So I’m guessing that it’s not helping. I will talk to him and get my lab report. I know that I have asked but never gotten anywhere.The second opinion thing won’t be very easy, as we are a military family and the military insurance have a wonderful ability to drag their feet when it comes to approving these things. I had an emergency consult put in when my initial TSH levels came back and it took them over a week to approve that. I know that the doctor I have is very smart, and seems to know what he is talking about. I guess I just felt like there were things I was not told or needed to know about, as most of my information comes from old medical books or the internet.
I will look into the books you have suggested, and thank you for telling me where to find them.
Thank you again for your help,
Very Respectfully,
Trish.It sounds like your doctor is a military doctor — and perhaps the same rules do not apply regarding sharing test results with patients. Civilian doctors have no problem with it.
Wishing you good luck,
Actually he is a civilian. I specifically requested a civilian, I worked with military docs for a long time and I’m not saying that they are any worse or better, just have limited resources.
Thanks for all of your help.
Hope everyone has a great holiday.
Hello – I would ask again for copies of your labs. For me, it is helpful to know if my levels are in-range or out-of-range and if they are rising or falling, based on the dosage of ATDs I am on.
Also, as Bobbi said — it makes a difference whether the ATDs are working in bringing your hyperthyroidism under control, in terms of whether you have some time to make a decision on RAI or surgery.
Best of luck!
So here is another question for you guys. Sorry for all of them.. ” title=”Smile” />
if I’m feeling pretty horrible, is that a good indication that things are not under control. I mean I feel really really horrible. I told the doc but he just said he would check the blood, which was on the 8th. How long do the labs take?
It is all I can do to get out of bed in the morning, and take care of my kid. I went to the doctor around june, at the time I was working 3 jobs, and being mom, so I never had time to go to the doctor a bunch. We moved, and my husband said my health was priority, so I’ve done the doctor circut and now that I’m getting treated I am beat. I have no energy, I feel like I have the flu, I can’t concentrate and I can’t seem to accomplish simple tasks, which would of been no problem in june. That does not even touch the topic of the pain that I have everyday. I’ve read about all of these symptoms, but they are usually after RAI. I have a friend that has graves and she has been through 2 storms, and treats hers with meds only, and she says she feels fine.
So since I’m not feeling great, should that be an indication of things not working??? I’m not even sure that makes sense.Thanks again for all the help,
You guys are great.
Trish.It might just mean your dose isn’t right, right now, to keep your levels normal. The labs should have been back long ago (I get my results by e-mail within a day), so check back with the doctor. It may just mean you need an adjustment in the meds and you’ll start feeling better soon.
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