[beach45]

in reply to: Why is RAI so controversial on the internet? #1171851

I like what elf said and I have seen in past posts Bobbi also saying similar about people who had success you will not find them posting on forums.

I have discussed with people I know here in my area and many had RAI or TT with much success and have gotten on with their lives.

I had my eyes checked prior by a thyroid eye doctor, not a regular eye doctor, prior to RAI and with my moderate TED he said go ahead and have it done. They told me very rare do they see problems that we are seeing on the Internet that people are having. It is also important that people do not smoke because it can make TED worse although I’ve seen people do RAI who smoke a lot and no problems years later post RAI!

Eye problems can also occur due to thyroid level problems and people can also develop TED many years after thyroid surgery. The people I know who had RAI 20 and 30 years ago never developed any cancers and feel well and look terrific! I’m sure there are medical studies on this too on patients post RAI.

I had RAI 2 weeks ago and had some hyperactivity and I am as of today doing very well. I feel more normal than I have in 2 years. I am not saying that there will not be problems as I am too new in this game of post RAI. Yet I know of others who had it and looked at me like I was crazy for not having it done and why was I torturing myself being on Methimazole for 20 months of up and down and was miserable. Of course too we are all different and like others have said the people who have major problems are the ones you are going to find posting on different sites about how terrible RAI is and sometimes I find some very positive people yet most of them have lives and do not have the time to be posting information on the Internet. This disease also is not easy to deal with and RAI and TT are not always the magic cure and even my current endocrinologist said he cannot guarantee happiness post RAI. Yet if a person is working with a good doctor who also listens, it can make the journey easier.

Best of luck.

Beach45

[beach45]

in reply to: Allergic Reactions to I-131 #1171508

Hello,

Thanks for the response; I actually do search the posts on this site regularly re: RAI and I have not actually found a specific answer for that question. One about iodine in CT scan. Which I already know about that having a CT scan myself with contrast back in 2009.

beach45

[beach45]

in reply to: Need for Beta Blocker or Anxiety Medication After RAI? #1171421

Bobbi, Thank you for the very detailed explanation as I needed that. Now I completely understand. I have such little time with my endocrinologist to go into details as he double books to see me as a patient as I come from 1-1/2 hours away and I was kind of shocked that he decided on RAI instead of increasing my Methimazole one more time yet it was 20 months; so he felt the up and down with the MMI was too much and that post RAI I would eventually even out once I got on the right amount of thyroid hormone.

He was not concerned about me post RAI as far as heart rate goes (!). Your explanation is so good and that explains probably why he was not so concerned being that my heart rate has been pretty much under control for 16 of the 20 months on MMI except for the sleep loss and the shakes I’m starting to experience. Well at least the nurse said call if the heart rate gets out of control to get a beta blocker.

Thank you again for sharing your story and the information!… beach45

[beach45]

in reply to: Palpitations and Hyperactivity after RAI? #1171391

Gatorgirly…thanks for sharing your experience! I already gained a lot 20 months on Methimazole and only slowly now dropping weight since I’m going hyper again. When this all started in 2010, I lost weight like crazy which was scary. I have those tremors, fatigue, not palps yet insomnia being on just 5 mg of Methimazole and I just am concerned being off of it for 1 week yet I guess it will go fast. My endocrinologist is not concerned that my heart rate will go crazy post RAI as he said being on Methimazole 20 months I should not have any major problems; yet both his nurse and my internist told me to call immediately if I have problems with rapid pulse/palps pre or post RAI.

I know a woman who had RAI a few years back and never came off of the beta blocker; on a low dose Metoprolol. When she stormed her heart rate was 200 bpm resting and rushed to the hospital. Even after RAI she had to stay on the beta blocker. Yet she is doing really well now.

You are right I am probably psyching myself out. I have a nurse practitioner who I consult with on the phone from up north where I came from and she told me be positive and do not get worked up. Yes it will be one good thing to just hang out in a separate room for a couple of days and maybe relax if that will be at all possible! Again, thanks for sharing!

[beach45]

in reply to: Palpitations and Hyperactivity after RAI? #1171389

Bobbi, thank you for that explanation as it does make a lot of sense why my endocrinologist wants me off of the Methimazole 1 week prior to RAI. I appreciate your comments!

Doxnem, thank you for your experience. It gives me relief. I know we are all different yet even my internist who I consulted with today reassured me that it will all work out just fine. He is working with my endocrinologist as my endocrinologist is 1-1/2 hours south of me at a Medical University and my internist is right here in town near the hospital I will be taking the RAI/I-131 May 3rd. The endocrinologist did say that getting to that balance may be uncomfortable and for some worse than others yet once I get to that point where I get on hormone, my internist said especially I’ll be over this up and down I’ve been on for 20 months with Methimazole. Sometimes I was going to being so hypo or so hyper that I just felt like I was out of control! My endo said that some do very well on Methimazole as I’m not one of them; and he is an endo who believes working with the Methimazole first, giving it a try for a while if tolerated. Plus my internist will give me a beta blocker if necessary pre or post RAI if I go over 100 bpm consistently. I really appreciate your comments as I think this anticipation is worse than anything!

[beach45]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171116

Thanks Oberon for keeping us posted. It sounds like things are moving along well for you.

Good luck mvk.

I take my RAI/I-131 May 3rd. I was told by the doctor I may not have problems after with hyper feelings because I’ve been on Methimazole 20 months (has not been working right for me!); I was in pretty bad shape back in August 2010 yet never went on a beta blocker due to using an herb to control the heart rate (only because I had reactions to the Metoprolol). Well I told the nurse if my pulse starts going past 100 bpm resting when I come off of Methimazole 1 week prior to RAI, I’m calling about getting some beta blocker! I am not taking any chances and never want to feel a resting heart rate of 130 bpm like back in August 2010.

It is wonderful that we can support one another through this journey!

beach45

[beach45]

in reply to: Why doctors fluctuate so much in treatment / lab values, etc. #1171187

Hi Catstuart7,
Glad you liked it! I hope it goes well for you with yur endocrinologist. I had a great one who left my area after 6 months. I have learned to work with the one I have currently yet it’s not easy. I read horror stories too and I get depressed. I want to be positive because this is a journey we go on and I believe positive thoughts will bring positive outcomes. My doctor can guide me and yet a lot is up to me too. I find with this disease too my mind is a powerful tool. Graves for me has not been easy to deal with yet I believe I will get there.

That is true some doctors just really don’t help much. That is the time to move on if we can.

Yes Graves is big leagues. A friend keeps saying why can’t I treat this naturally. I already went that route consulting with different medical profesisonals and I find this disease needs to be treated with ATDs, RAI or TT. I never wanted to go on MMI and it’s messed my body up very much and yet now that it is not working I have to have RAI as I just do not want TT. I would love to have found some natural means yet it is just not that way. I’m with you on that I’m ultra sensitive to medications, had allergic reactions and side effects and the doctors for me don’t listen. I am just going now with my endocrinologist as I’m so very tired, frustrated and I wish I had just done the darn RAI back in August 2010 as I was recommended to do back then! Now after being up and down on MMI for 20 months I’m possibly going back to fluctuations before I go on Synthroid or possibly eye problems and putting my body through more turmoil. If I were much younger, maybe I would put up more of a fight; yet at 53, and I’m exhausted with all this and doctors and lab tests, etc. I just hope that this doctor will get me through to where I need to be to maybe get to somewhat normalcy again if there is such a thing! Hang in there though and do the best you can for yourself starting out with this finding the right doctor for you! You will do fine as we all do somehow! Best of luck in your new journey and hope it is smooth for you!…Gloria

[beach45]

in reply to: Any input on RAI appreciated please / having it in a few days #1171268

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!

[beach45]

in reply to: Any input on RAI appreciated please / having it in a few days #1171264

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!

[beach45]

in reply to: Any input on RAI appreciated please / having it in a few days #1171262

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!

[beach45]

in reply to: Why doctors fluctuate so much in treatment / lab values, etc. #1171183

Kimberly,
Thank you for the response.

I see from what you say that doctors do have a certain comfort zone with how they go about treating a disease based on training and experience and do not want to vary much from that or go outside the box. Well especially if their treatment method in general works for the majority.

Yes I do hope that the guidelines will catch on. In fact my ob/gyn who does not treat Graves yet hypothyroid conditions, is starting to use the new lab values and also my internist who is more willing to work with me yet I’m told work with only an endo at least in this phase of my disease!

I agree, I am the customer and I happen to have a newer endo who doesn’t listen and dictates and the one I loved left my area. I do not have the luxury of moving around from endo to endo where I live due to availability; and also at least good endos who work with the patient as I keep up with these doctors on vitals.com or ratemd.com although some of the comments are subjective yet the ones I read on my current endo I’m experiencing similar. I drive 1-1/2 hours to see my current endo and I’m looking into another highly recommended one who is 1-1/2 hours the other way.

You are so right about that our relationship with our endos tends to be long-term! To me feeling comfortable is important. It sounds like your endo works with you and I hear of other patients who endos work with them and that is wonderful and I hope that I get to that point again someday like with the one I had last year who left!

That is the key; finding that sweet spot as you say whether on ATDs or post RAI or TT.

Love your response! Thank you again!

[beach45]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171084

When I listen to comments here and on other forums it sounds like I’m either going to get cancer eventually if I choose RAI or I’m going to go blind with my moderate TED. I have seen a medical report on cancer incidence post RAI and it was a very limited study group and the percentage was low. I do know of people who had RAI many years ago and no cancer, no eye problems and going strong. I know too possibly it depends on how much of the I-131 taken as I know cancer patients get a higher dosage than say Graves patients typically. I also know that a lot of people have thyroid eye disease and sometimes do not even know it and have problems post RAI and then I’ve heard of some who’s TED actually improved post RAI. I guess in a way it can be a risk with whatever choice we may make with treating this disease as even ATDs have some side effects which my doctors tell me are not very common especially at lower doses. Even thyroid surgery comes with its risks and being over 50 myself and knowing that I don’t fare well post surgery as I had a rough time after a surgery for months back in 2009, I get confused how to move forward. All I can say is to do as much research as you can as I have in 20 months of being on Antithyroid Methimazole (read medical journals, talked with regular and holistic practitioners, 3 endos thus far, have many books on Graves/thyroid) and try to make the best educated decision based on information obtained. I’ve also been advised by holistic medical practitioners that it is not wise to try to treat Graves by natural treatments and be careful with certain supplements and one of them is a nurse practitioner who believes more in natural means to treat disease in general! I don’t like to discuss the natural as I prefer natural yet I won’t go there with this disease as I know of people who died treating it naturally alone. I was lucky, I have some time to choose. Yet for myself I go with one of the treatment options ATDs, RAI or TT. I know others who stormed who did not have as much time to make a choice and had to have RAI as their Graves was severe. I wish all good luck with their decision making!

[beach45]

in reply to: ATDs, RAI or TT #1171155

Thank you for that information as I went and found guidelines and printed them out to discuss mid April with my endocrinologist.

It is really great when an endocrinologist works with the patient with the MMI. Mine does not believe in the 2.5 mg dosing up and down. Since it is only my 4th visit with him coming up, I need to convey to him how sensitive I am to medication. I know if he increased me back up to 10 mg from 5 mg of MMI I will start to go drug induced hypothyroid in 6 weeks. The endocrinologist I like who left my area was amazed at how fast I went hypothyroid back in Winter of 2011. I’ve been up and down a lot; the funny thing with all this though I don’t lose the weight even with strict diet and exercise yet I get all other hyperthyroid symptoms! I won’t dose myself though by symptoms because I know now that can really mess up how the lab values come out and I don’t want to be dishonest with my doctor. At least through all this my internist is starting to see how sensitive I am to medication and that he is seeing where my levels need to be at for me to function pretty normally. I have an excel spreadsheet of all my MMI dosages, dates, lab results including Free T3, Free T4, TSH, LDL, the antibodies and physical changes back when I started all this in September 2010 to now March 2012. My newer endo did comment he never saw such fluctuations. Well to me it is not one size fits all why I wanted to only decrease by 2.5 mg because I know my hyper symptoms would come back. He’ll see for himself mid April from blood testing I am getting tomorrow yet he said he would increase me again if necessary which will be 5 mg as he doesn’t believe in 2.5 increments and then if by end of year I’m not in remission, then I go to RAI. He kind of laughed at me initially November 2011 when I was a new patient of his because I asked for RAI because I was tired of the rollercoaster ride on MMI.
He said not many people ask for RAI!

Thank you both very much as you have been very helpful and informative!

[beach45]

in reply to: ATDs, RAI or TT #1171153

Thank you and that makes sense. I have been trying some natural methods for sleeping and will go to prescription if I need to.

I also saw patterns on MMI that when I go toward hyperthyroid I stop sleeping. My levels are just about over into the hyper range again (my internist just tested me and my T4 and Free T3 are just on the border and my TSH went from 5 down to 0.140 in 6 weeks). Sept 2011 as my levels started going back toward hyper, again I developed insomnia. Yet I have no clue how this works as I did not lose any weight nor is my pulse rate up yet the sleep is the first thing I notice that changes. As soon as I go back toward hypo, I’m sleeping too much again and am fogged.

I had about a 75% RAI uptake back in August 2010 and my heart rate was 120 to 130 bpm resting and I was a mess; shaking, not sleeping right, fast pulse, feeling wired, not feeling like a normal person and kind of psychotic, tremors, and lost weight fast without trying. All the classic hyper symptoms of course. I opted against RAI and now wish I had taken it and was on my way to somewhat normalcy even with the moderate TED. Now 20 months later and up and down it’s seems to have taken it’s toll on my body.

I know even post RAI it takes a while to even out yet I feel from things I read and hear I may be able to become better balanced in time. I know that this disease is not easy to deal with and that sleep patterns can change. I just know with myself I see patterns of when I go too much one way or another and I imagine this can happen post RAI too.

I have testing soon with my endocrinologist and he will see how my levels went to extreme just on a 5 mg MMI drop (plus he tests Free T4 too!). He is not willing to change me less than 5 mg as an increase or decrease of MMI so I’m at the point where I just need to do something to hopefully get on with my life. I’m not one either to take too many medications as I’m ultrasensitive, even times to supplements so it’s not easy. Plus I have other issues like with past addictions and my internist stays away from certain things for me as I’m sober 7 years. Quit smoking too 9 years ago. I’m really not fearful of RAI it’s just my moderate TED which the thyroid eye doctor said it’s not active so should not be a problem with RAI as I hope that he is right!

Thank you again for your input as it all makes a lot of sense and why the doctors don’t go by symptoms. I know there are many who use sleep aids and I also was considered “slightly hyperthyroid” for years yet no doctor did further testing and I had disturbed sleep off and on for years yet only when I went toward hypo did I get the best sleep!
This is a great site!

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