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    Old 06-30-2006, 01:04 PM   #1
    korunner
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    Question about hyperthyroidism

    I've recently been diagnosed with hyperthyroidism and just saw and endo doctor today. He put me on tapazole to get my thyroid under control for now. He also said that I can stay on meds for 18mos. and see if the thyroid goes back to normal or have radioactive iodine treatment and this will fix the problem but I'll probably be on meds the rest of my life. This is all new and scary to me. Anyone have any personal experiences or recommendations. Thank you.
    Keith

     
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    Old 06-30-2006, 03:36 PM   #2
    lookin4aclue
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    Re: Question about hyperthyroidism

    Dear Dear you really do need some answers. First off your doc is like most out there, that really believe they are helping by putting you on ATD(your tapizole)and then saying RAI if in 18 months it doesn't work. That is not true. Depending on your case depends on the course. I myself have had RAI and it was what I think could have been the stupidest thing I ever did. You really should do some research and check this out. ATD can be takin for longer than 18months. You need to be monitored, and you need tests done. If you have Graves(which you didn't say if you did or didn't)you souldn't have RAI IMOP. RAI is a risk. Please do research if you have Graves, look for Graves Disease and thyroid up in searches, find what you can, read everything. Also thyroid for Dummies is a good book to start with. Go from there, I would be glad to give more info, and there are a few here that have Graves, haven't seen them on in awhile, but check out posts from hyperKim and K9mom and even mine. Check out the posts they give lots of info, mine are more question(and I am hypo now) Not liking what I'm living with thanks to RAI.

     
    Old 06-30-2006, 04:13 PM   #3
    korunner
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    Re: Question about hyperthyroidism

    Thanks for the info. The doctor didn't say if the hyperthyroidism was a result of Graves disease or not. That will be my first question when I see him again. He just said it's hyperthyroidism and here's the two options. He didn't discuss the causes and when I asked about them he said that it's probably hereditary. I'm going to buy the book you recommended tomorrow and get better informed, thanks again.

     
    Old 07-01-2006, 09:53 AM   #4
    hyperkim
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    Re: Question about hyperthyroidism

    Hello, Korunner! Welcome to the board!

    Lookin' is right that you can stay on meds a long time if needed. I have met people that have taken them for over 20 years. Proper monitoring and testing are essential. Read your info on the Tap you got from the pharmacy. Manufacturers recommend taking ATDs split into 3 doses per day. Taking them any other way will not help you get stable. The goal of ATDs is to lower your thyroid levels. If your levels come down any at all, don't let your dr tell you they don't work for you. Some drs don't really know how to monitor ATDs. They either don't give you enough med and your levels don't come down enough. Or they give you too much and you go hypoT. When done right, med is given in a strong enough dose to make the levels start coming down in a steady pace. Then as levels drop into "normal" ranges meds should be reduced to prevent the patient from going hypo. The maintenance dose is whatever dose it takes to keep a patient at "normal" levels with the least amount of symptoms possible. Some people's thyroid gets the message and will start to regulate themselves. As the thyroid takes over less med is needed and is eventually eliminated. Some people refer to this as remission. Remission is not possible with RAI. While on ATD you need to have blood tests testing the Free T4 and Free T3 every four weeks. Sooner if you start to have a noticable change in symptoms.

    RAI will not "fix" the problem. This irritates me. The fact is "something" is causing your thyroid to over produce. Something. The symptoms from this "something" is you are now experiencing hyperthyroidism. Your thyroid is just doing what it is told by whatever this "something" is effecting. So killing your thyroid with RAI will "fix" the symptom. But it won't do anything to effect the "something" that is going on that caused the symptom.

    Thyroid levels are effected by the pituitary gland (it puts out the TSH), thyroid nodules, goiter, thyroid antibodies, cancer, and most importantly by diet and lifestyle choices. It is imperative that you research and help your dr find out what is causing your hyperthyroidism. Find out your cause "before" you undergo a permentant treatment like RAI or surgery.

    And graves disease and hyperthyroidism are two different things. Hyperthyroidism is high thyroid levels. Graves disease is an autoimmune disease that can cause hyperthyroidism, pretibial myxedema, and/or TED.

    Graves disease is caused by an antibody that mimics the TSH in stimulating the thyroid to produce more hormone. The antibody in graves disease is Thyroid Stimulating Immunoglobulin (TSI). If you do not have graves you will not have this anitbody. You can have "normal" levels of this antibody and still have graves if you are symptomatic. It can be called early, pre-, mild graves. Whatever. It still means you have the anitbody and its job is to stimulate the thyroid. Period. And of course, if levels are above normal the drs will say you have full blown graves. Same difference they are still just doing their job.

    If you have no TSI antibodies, then you need to find out what else could be effecting your thryoid levels. So as I tell everyone...Research, research, research! If you don't know what to expect, how do you know if you are getting proper treatment from your dr?

    And don't be afraid to "fire" a few drs to get to one that "knows" how to treat and monitor thyroid disorders. All drs are not created equal. They are not GOD. They are human just like you and me. Look at them like a service provider like a mechanic or shop owner. If you don't like the service they provide. Shop somewhere elsewhere.

    Ok, sorry. I'll stop the info overload. Let us know if you have any questions.


    Lookin'......I am still out there hanging around! Haven't gone anywhere just feeling more like a slug lately. I use supplements to suppress my hyperT levels. Apparently I have been successfull. Woohoo! I dropped to the bottom of the ranges of T4 and T3 a few months ago. I have been reducing the supps each month after labs. I have now weaned completely off the supplement I was using. Can't wait for next lab results. I am feeling hypo with fatigue and brain fog being the worst. That brain fog just makes it hard to keep up with the message boards like I was. Luckily I am having a good morning. Woohoo!

    Hope everyones having a Great Weekend!
    Kim
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    Hyperthyroidism 11/05
    Confirmed Graves Dx 1/06
    Adrenal fatigue Dx 8/06
    Fibromyalgia Dx 1/08
    Chronic Fatigue Syndrome Dx 1/08

     
    Old 07-01-2006, 07:50 PM   #5
    korunner
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    Smile Re: Question about hyperthyroidism

    Thank you very much for the information. I took Lookin's advice and bought the Thryoid for Dummies book. I've spent most of my day devouring the info in it. Boy have I learned alot. Thank you very very much to her for that recommendation. I will definitely try to avoid the RAI at all costs even if it means getting a new endo doctor. My doctor didn't say if I have Graves disease and I looked at a copy of my latest labs and couldn't find any TSI so that will be one of the first things I ask him next time.
    I know I'm new here but I just can't say enough about the advice I've gotten so far. Thanks again!
    Keith

     
    Old 07-01-2006, 09:17 PM   #6
    lookin4aclue
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    Re: Question about hyperthyroidism

    Oh just one more thing here, when you have tests done, make sure that you always get the results and the ranges this will help you know what your doing, and what your body is up too, and what levels you think that you feel best at(keep notes when tests are done telling how you feel with each one) I would give more but short on time this PM. Yes make sure and ask about the Graves, if he doesn't know make sure there is antibodies tests done, that way YOU know.

     
    Old 07-03-2006, 12:36 PM   #7
    Hypergirl48
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    Re: Question about hyperthyroidism

    Hi, Korunner!

    Research, research, reseach--and then you and your doctor decide what's best for you and your situation. Another book that I found extremely helpful is The Complete Thyroid Book, by Kenneth Ain, MD and M. Sara Rosenthal, Ph.D. If your doc wants to talk AT you instead of WITH you, try to find another one. (I know that can be difficult sometimes, depending on your insurance.)

    I'm fairly new, as I was diagnosed with hyperthyroid the end of 5/06 by my GP, diagnosed with Graves' 6/06 by endo, and decided to have RAI two days after being diagosed with Graves' (RAI 2-1/2 weeks ago). That's a really fast period from diagnosis to RAI, but I had done my research before my endo appointment and decided that's what I wanted to do for various reasons. Months or years from now, I may regret that decision, or I may be very glad that's what I did. Only time will tell, unfortunately!

    You can have negative reactions to RAI (not everyone does), and you can have negative reactions to ATD (not everyone does). A lot of times ATD works and you can go into remission, a lot of times it doesn't. It's a very difficult decision, but the most important thing is to not panic and go into whatever deicsion you make with your eyes wide open.

    Take care!

    Pam

     
    Old 07-05-2006, 09:27 AM   #8
    korunner
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    Re: Question about hyperthyroidism

    Thanks for the information I was looking for another book to read about thryoid issues. I read Dr. Rubin's and found it very informative. Did you have any negative reactions to the RAI? I'm not sure yet what I'll do I'm leaning towards staying on the meds and seeing if I'll go into remission. I generally like to hope for the best, but we'll see. I go back to the endo in six weeks to see if my how my levels are and then I'll have to decide which way to go.

     
    Old 07-05-2006, 10:04 AM   #9
    lookin4aclue
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    Re: Question about hyperthyroidism

    Just to let you know I had RAI, and it has been several years since, and for a long time I really didn't have any problems. I did go very hypo before they got me on meds for it. My TSH was 96. This took a full year to get any results from the RAI. I didn't feel well at all. But after the meds were all level and all levels were within normal range I stayed on meds for three years without problems, but not really feeling great either. I was thinking ok this is just how you feel from now on. I then got pregnant(which caused it's own problems)I ended up having a baby with Graves(I passed the antibodies on to her, so this Graves passed)But while pregnant I had really really bad pains in my eye. I waited till after I had her, and saw an eye doc. Guess what? TED, and not just mild either. I was put on steriods, and have had radiation(which worked some, but not well). Now I still have active TED. My antibodies were tested after my child was born and they were 296 with the normal being >130. Nowing now what I should have known then I wouldn't of opted for the RAI, until I had at least tried ATD first. I mean these are things you could give a try, and then have RAI if they do not work. I am now hypothyroid, and wish I would have tried ATD, had I known that I could of gone into remission I would have tried them first. But then again what is good for me might not be good for you. Not pushing ATD on you, but also want you to be informed of what choices are out there since I wasn't.

     
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