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in reply to: I Choose RAI I-131 #1063429
Just Checking in:
I am 46 days Post RAI 20 MCI with in 10 days I was in the normal range on the T3 TSH still suppressed. I have been having swelling and pain back down where the thyroid is/use to be? I went to the endo and he said there is no thyroid left. Um yes there is and I can feel it and see it in the morning. I took blood work and I I did a 1 month follow up with blood work and the T# and the TSH have not changed at all. It upset me that the endo whom I have known for 20 years said (well his nurse told me) that I would receive a letter and to schedule an appointment with the primary. Thank God I have a great primary that is use to Hypo and he gave me the monthly standing order for TSH T3 T4 and a CBC panel. Since I had stared this journey called graves the red and White and Nepho etc have all been out of whack. So I am in a holding pattern on figuring out what is happening with me _ get me next blood draw next week so we will see what the true numbers are.
About the TED yes I am still having issues with it. It appears to be doing a little better off the steroids then on them but there is the double vision thing. So I really am not too sure what were going to do for that because I am still in the hot phase. All of my Dr’s think that I am allergic to the filler on most pills because I have so many pills I am allergic too. Including now steroids.
As for how I am feeling I am having more good days than bad days. I could not imagine having to deal with the uncontrolled Graves for longer than I did. July 1 – Nov 5th. (I was allergic to the MMI and PTU and was in the hospital with throat edema) Oh boy what that not fun at all.
The other day I did so much I forgot how really truly sick I was until I sat down that night and realized that wow I went all day with out a mandatory rest period. Usually I was having rest periods every 20 mins or so. To those waiting and seeing and to those like me who wanted surgery but could not because the levels were too high. Getting the RAI is totally worth the hassle. Yes I am still concerned about future issues from the radiation however I really do believe that I would have died from a Thyroid storm had I not taken care of this pronto. Beta blockers were only taking the edge off and not taking care of my issues.
So All in all I am happy with how things are going. Not as fast as I wish them to go but still. I am alive and finally realizing how dirty and messy my home got while I was out of it. Now I am putting all of my energy into getting it straightened out everything back into its place. I can tell you my mind has finally come back and my memory is getting a whole heck of a lot better.
Merry Christmas to those of us who celebrate it.
Julesin reply to: I Choose RAI I-131 #1063427Ok so now what …
I took blood work on Monday after the Dr. appointment, Im now in normal range and dropping fast. I got the test results and I am mid normal. Dr’s note to nurse is wow dropping fast. I have to ccall the Dr because that statement just will not do it for me. Remember that day I said I felt great. well I have been slidding back into not feeling well sore throat, hoarse voice, light pulse cold intolerance cramping toes constipation weight gain past 3 days lack of appitite etc… I asked the nurse about so when do I start the replacement and she said normal is good you dont need anything. uh yea I do. I know by the feeling that I am having i am slipping in to the hypo range.Yes I am still on the steroids. only a smaller dose and he wants to step me down off of them. I go to the eye Dr and the Endo on the same day next month.
I really dont want to go too low before starting replacement any Ideas?
in reply to: is this fact true? #1063601Having just gone through all of this here is what I heard.
Your blood work tell the story. The RAIU is generally used only for testing how much RAI to give you if you are choosing that option or if you all of a sudden start having more issues ie PAIN Swelling.. That is what happened to me. I was DX off blood had issues with the meds. Had a flair up of massive pain told Dr to schedule RAI they scheduled a uptake and scan then a week later I had the RAI.
in reply to: I Choose RAI I-131 #1063424Ok So I am now 13 days past RAI. I am still having some minor eye issues.
Here is the update in detail
On Saturday day 9 my thyroid dumped and boy do I mean dump. I am on Metopolol for the rapid heart rate. I take them as I needed. I’m usually about 150 mg per day. Saturday I had to take 350mg to make it through the day. I went to the endo on Monday. He said well you should really start feeling better real soon it looks like your thyroid is clearing out its storage of hormones . Sure enough yesterday I only took 75 mg for the whole day and felt almost normal it was truly euphoric. I really had to remind myself to take it easy and not over do it. I went and had the blood drawn for the first time in months. and I get one ever 4 weeks until who know when.Regarding the eyes – I went to the Shiley eye center. Not too impressed because he really did not look at or do much of anything other than do a color test and one measurement and then a 2 person team cam in an did about 40 pictures of my eyes. I was told come back next month. Oh and to stay on the steroids. I told the endo and he is concerned with keeping me on the steroids becaus of the side effect. I was OK with staying on them until I did some research and now I think I am going to ween my self down and off of them and see what happens with the eyes.
Why the last 12 days have not been a walk in the park – I am seeing how really sick i actually was and that there might be light at the end of this tunnel called graves. More later.
in reply to: Dose of I 131? #1063392My Dr. said 20 mci would kill the thyroid then when I go in to take the pill the tech goes " No this will only kill part of it" WTF. It really is not regulated. I have read where people go hypo after 10 mci and Hyper after 2 doses o 30 mci. Go figure.
in reply to: I Choose RAI I-131 #1063422Updating – I am having a few minor eyes issues that have gotten worse from the RAI I Have an appointment with the Shiley Eye Center tomorrow. Frustrating that I can not drive at night. UGH. Other than that I think my thyroid id starting to dump a little. Is there any way, that I could be going hypor so quickly, I am starting to get toe cramps and very cold.
in reply to: I Choose RAI I-131 #1063421Day 5 update well the neck is getting sore however I have been able to work yesterday and today. I am on pain meds for the sore throat but can’t take them at work. Trying ice. Seems to help some. Other than a sore? Tender? Throat and a froggy voice all is well.
in reply to: I Choose RAI I-131 #106342024 hr update took the pill. Had afunny smell and taste for1min. Drove myself home. Feel great! Slept just fine. Funny I don’t feel radioactive
Yes I do understand your feeling of out of body so to speak. It is weird to explain and the dr thinks I a nuts because each time I explain it different. I have thought this thru and have figured it out somewhat. I think it is more like brain fog. It feels like I’m slipping out. Then I panic and jump back to my current task. Motion with deep consintration seems to make it more noticable. I find that have actually was holding my breath, making me breath faster when I jump back. I know it sounds crazy but that is what happens. My RN friend said it is a panic attack. Not sure if it is from hyper because I am not regulated since I am the 1% allergic to the anti thyroid pills.
Just the beta blockers and atavain for anxity are keeping me sain right now. I meet with the surgeon to see if I’m a canidate fir surgery since I am hyper without the pills.
Hang in there and the Xanax will work.
Welcome to the club none of us want to belong to Krystal.
Before I go into it. You will feel better. This is a very slow And frustrating process.
I am fairly new to this (7/1/10) I have/had all of your symptoms. I was on the anti-thyroid meds you are on. While they did not work as fast as I wanted them to they do work. It takes a few weeks before you will actually start feeling better from the mmi. In the mean time there are pills your doctor can perscribe for you to mask the symptoms you are having. Beta blocker helps with the racing pulse. Anxity pills help with the jitters and the I want to jump out of my skin feeling. Sleeping pills etc… You need to discuss your symptoms with the dr and get some help.
The worst is not sleeping. I found out that with beta blockers and anxity pills I am able to sleep a good 7 hours.I had an allergy to the mmi (long story) so I am only on the beta blockers and anxity pills until I can have either surgery or RAI.
One word of advise is
you know your body if something is bother you call the dr or make an appontment Go in and talk to the dr. Do not wait for you next check up. Dr’s really don’t know as much about graves disease as the do about hypo.
As soon as you get help with your symptoms of graves it is easier to think calmly about what you want to do to either manage it or fix it.This is a gread board to get info from, have questions answered or to just vent with people who know exactly what you are going through.
Hang in there it will get better. Praying for you.
Julesin reply to: Anyone else allergic to thyroid meds? #1064058Shirley – No blood work since the ER then the WBC was out the roof. I will not see the endo for at least another 2weeks or so. OOOPS on the meds that was for the sore throat – I am an ativan and the Beta Blockerfor the shacks and wanting to jump out of my skin. Sorry today is a bad day for me to thinking I am having a bad brain fog day if you know what I mean.
in reply to: methimazole side effects #1064749This is all from 08/29/2010
in reply to: Anyone else allergic to thyroid meds? #1064056Thank you for your thoughts on this. I know for a fact by the symptoms, I am very hyper since being removed from the meds on 08/29. All of the symptoms are back. so your questions are valid. I am wondering since I do not see the endo until my insurance gets changed over, Oct 1st if any one knows how long you can go with out the ATD’s and be just on the atavan and the Metoprolol 50mg twice a day. I feels like the Metoprolol stops working about 1.5 hours before it is time to take the next one.
I really hate that I am having to experiance this again. The ATD was taking my levels to a more controlable hyper state. I am scared of the RAI and the Endo want me to have that over the surgery because of the complications that come with surgery. Just frustrating.
in reply to: methimazole side effects #1064747Also after not taking meds for 2days in hospital the WBC was 14000 they said that thE meds were holding the WBC in the normal range becuse upon checking in the er WBC was normal
in reply to: methimazole side effects #1064746Update the WBC came back in normal range. 8/27 I woke up with extream sore throat rushed to hospital admitted due to sever inflamation in the throat hoarsness. No one had me on the mmi for 2days throat felt great on third day was told ok to take mmi with in 2hrs throat was hurting. Told to stop mmi no ptu put an atavan and long acting beta blocker. Waiting on insurance to change and the have to make the choice surgery or rai.
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