# Currently going through RAI



## madriiz

Hello everyone I am new to this! Trying to make my stay away from my fam as sanely as possible, lol.

I have Graves Disease, was dx in Oct. '05. Was given Methimazole (dont remember the dose) but was "rebellious" and didnt take it as was indicated. In Jan. '06, I found out I was pregnant with my second daughter. I was immediately put on PTU. Thank God everything turned out perfect despite my high risk pregnancy. A few months after having my daughter in Sept. '06 I was put on Methimazole 5pills a day and Propranolol 20mg 1pill 3x a day. As the years went on I continued to stay Hyper...no change in my levels. Last year however, my levels started to go down. I was lowered to 4pills of Methimazole and this year lowered to 3pills. My Propranolol was upped since my heart rate wouldnt go down from its standard 100bpm. This year after speaking to a Nuclear Medicine Dr. I decided to do the RAI. On wednesday, I went to take the pill for the uptake. On thursday, July 8th, they did the scan and found my uptake at 88.4%! So they gave me a dose of 12.6 millicuries in pill form that same day. I did feel nausea and light headed but it went away after 15mins. The rest of the day was a breeze, friday was a breeze as well just have been in here watching movies and FB with my friends. Today Saturday on the other hand was a little different. I woke up like nothing. Hungry actually. I ate breakfast my hubby made me a breakfast sandwich and then I started to feel it. My hands and feet started to sweat, my face felt hot, I had a burning sensation in the pit of my stomach. I felt like I had to get up and do something. I do remember the Dr. saying I would have some hyper sypmtoms but I felt like I was going to go nuts, lol. I took a shower to calm down and had my hubby and daughters in our room so I could go outside for a bit to relax and calm down. My heart rate did go up a little to 84bpm which is normally now at around 72. But after doing that I felt so much better. I decided to go online and find any info about other people going through this right now and found this forum.

Just wondering...Is this hyper "feeling" going to get worse as the days go on? I hope not because I am not too fond of the feeling...I'm sure no one is, lol.

Well, thanks for reading and any replies will help get me through these next couple of days. Thanks in advance!

~Madriiz


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## madriiz

Hello everyone havent gotten any replies but just wanted to keep anyone who is reading updated...I felt so much better today!!! I guess just yesterday did I have that little episode  Anywho...It's been a breeze and I am so excited because tomorrow is day 4 out of 4...YAY!!! I get to come out of my hole!! lol

Just wondering if anyone knows...

I've been having heartburn a lot lately. Is it safe to take TUMS or Rolaids? If anyone can reply ASAP because im hurting... I'd greatly appreciate it! thx in advance


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## Andros

madriiz said:


> Hello everyone I am new to this! Trying to make my stay away from my fam as sanely as possible, lol.
> 
> I have Graves Disease, was dx in Oct. '05. Was given Methimazole (dont remember the dose) but was "rebellious" and didnt take it as was indicated. In Jan. '06, I found out I was pregnant with my second daughter. I was immediately put on PTU. Thank God everything turned out perfect despite my high risk pregnancy. A few months after having my daughter in Sept. '06 I was put on Methimazole 5pills a day and Propranolol 20mg 1pill 3x a day. As the years went on I continued to stay Hyper...no change in my levels. Last year however, my levels started to go down. I was lowered to 4pills of Methimazole and this year lowered to 3pills. My Propranolol was upped since my heart rate wouldnt go down from its standard 100bpm. This year after speaking to a Nuclear Medicine Dr. I decided to do the RAI. On wednesday, I went to take the pill for the uptake. On thursday, July 8th, they did the scan and found my uptake at 88.4%! So they gave me a dose of 12.6 millicuries in pill form that same day. I did feel nausea and light headed but it went away after 15mins. The rest of the day was a breeze, friday was a breeze as well just have been in here watching movies and FB with my friends. Today Saturday on the other hand was a little different. I woke up like nothing. Hungry actually. I ate breakfast my hubby made me a breakfast sandwich and then I started to feel it. My hands and feet started to sweat, my face felt hot, I had a burning sensation in the pit of my stomach. I felt like I had to get up and do something. I do remember the Dr. saying I would have some hyper sypmtoms but I felt like I was going to go nuts, lol. I took a shower to calm down and had my hubby and daughters in our room so I could go outside for a bit to relax and calm down. My heart rate did go up a little to 84bpm which is normally now at around 72. But after doing that I felt so much better. I decided to go online and find any info about other people going through this right now and found this forum.
> 
> Just wondering...Is this hyper "feeling" going to get worse as the days go on? I hope not because I am not too fond of the feeling...I'm sure no one is, lol.
> 
> Well, thanks for reading and any replies will help get me through these next couple of days. Thanks in advance!
> 
> ~Madriiz


You poor dear. Too bad no one told you about "dumping" for that appears to be what happened and it is common. That is thyrotoxicosis due to either RAI or surgical removal of the gland. It just plain "dumps" into your system.

I do believe the worst is over for you now but if for any reason you are in doubt; contact your doctor immediately.


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## madriiz

Andros, Thanks so much for replying! Yessss the worst is over today monday I feel awesome!!! Spoke to the Dr. today and am out tomorrow with NO restrictions!!! Super duper excited!!  Unfortunately I cannot hug my girls who are 5 and 3 for long periods of time for the next 3 days and she said to keep them away from my neck area as much as possible for those 3 days. But I can sleep with my hubby (yay!) and cook dinner for everyone and use the same bathroom...etc.

I honestly thought this was going to be a lot worse but am so happy I decided to do it. Have no regrets


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## Lovlkn

1 week - really? I thought it was a much longer restriction.

I know of several people whose husbands have become hypo within a few years of them having RAI so please be careful.


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## madriiz

Yup...could it have been because of the low dose they gave me? My uptake was 88.4% so they only gave me 12.6 millicuries.

Andros I read this in another post from someone else about "dumping". I know its hard to know how long it lasts but in your experience how long did it last for? Anyone else who could help with their experience?

I ask because today was having an awesome start and then I felt it again...sweaty, hot in the face, stomach ache, nausea, even diarrhea. My pulse doesnt go up that much it hasnt gone above 84bpm when this happens. Then like an hour or two later I'm back to normal. Is this what usually happens?


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## Andros

madriiz said:


> Andros, Thanks so much for replying! Yessss the worst is over today monday I feel awesome!!! Spoke to the Dr. today and am out tomorrow with NO restrictions!!! Super duper excited!!  Unfortunately I cannot hug my girls who are 5 and 3 for long periods of time for the next 3 days and she said to keep them away from my neck area as much as possible for those 3 days. But I can sleep with my hubby (yay!) and cook dinner for everyone and use the same bathroom...etc.
> 
> I honestly thought this was going to be a lot worse but am so happy I decided to do it. Have no regrets


You do sound so much better today; less frightened and I do think the "dumping" is over.

So...............tell me; when do you go for labs to make sure that you get on replacement meds for the thyroid in a timely fashion?


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## madriiz

They said to go in 3 weeks for labs to see how I'm doing. The only thing that I am concerned with right now is that I get tired so fast. I made lunch, washed dishes, cleaned up a bit and I feel wiped out! My pulse went up a lot too up to 90 bpm. Did I push myself too much for being the first day out?

I'm resting right now and its down to 72bpm but I did take my second dose of Propranolol for the day (3pills 20mg ea.) about an hour ago so that probably kicked in.

I want to be able to do everything like I did before but I guess I have to be patient...


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## madriiz

Hello everyone just wanted to update....It's been 2 weeks since I did the RAI and OMG I feel such a HUGE difference! I'm not jittery and my heart isnt racing. A few days ago I got the ok to start lowering my Propranolol 1 pill every 1-2 days because my pulse now is always in the 60's/low 70's.

I have noticed however that my hair is starting to fall out a lot more easily especially after I brush it or take a shower. :-( My hands are usually dry. I had to start carrying around a travel size hand lotion. Also, esp at night I'm freezing! Last night I had to sleep with a heating pad because I just couldnt get warm and it wasnt that cold. I live in the valley in California and it was 55 degrees last night. My husband and my girls did complain that it was cold but I felt like I was freezing!

I messaged my endo and he said it was normal that my body is just adjusting (that's how he put it) but to go to do labs in 2 weeks. I will definitely go in exactly 2 weeks!

Well just wanted to update. Hope everyone is doing well.  See you soon!

~Madriiz


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## GD Women

Hello!

Your hair issues is probably a delayed thyroid issue. I didn't have hair loss issue, in fact it was the revers, it grew faster than normal for me. And I am also a cold person wearing layers of clothing winters. I just took off my fleece sheets but my electric blanket is still on the bed for just in case. Anyway, glad you are doing better and it does get even better.

Thanks for your up date.:hugs:


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## madriiz

Hello everyone!!! So it has been 4 weeks since I had RAI done and have been feeling great! I still feel a little anxious once in a blue moon but it passes very quickly. Before it would take hours for it to pass and now it passes in minutes.

I went to do labs this morning and actually just got the results:


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## madriiz

ooops! lol sorry for the cut off prev post but my results are as follows:
Tri-Iodothyronine Total 157 ng/dL...standard 50-170 ng/dL
Free T4 1.2 ng/dL...Standard 0.8-1.7 ng/dL
TSH 0.03 uIU/mL...standard 0.10-5.50 uIU/mL

I asked my endo about my TSH still being so low and he said that it takes longer for that to be in the standard range. He said that since my T4 and T3 are in the normal range that I am not hyper anymore even though I still have mild symptoms once in a while (anxious feeling). He did tell me that it takes 2-4 months until I go hypo so just as these 4 weeks went by fast I am hoping the next will as well.

I go for labs again in 4 weeks and will keep everyone posted. Thanks!

~Madriiz


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## Andros

madriiz said:


> Yup...could it have been because of the low dose they gave me? My uptake was 88.4% so they only gave me 12.6 millicuries.
> 
> Andros I read this in another post from someone else about "dumping". I know its hard to know how long it lasts but in your experience how long did it last for? Anyone else who could help with their experience?
> 
> I ask because today was having an awesome start and then I felt it again...sweaty, hot in the face, stomach ache, nausea, even diarrhea. My pulse doesnt go up that much it hasnt gone above 84bpm when this happens. Then like an hour or two later I'm back to normal. Is this what usually happens?


As I recall, the dumping lasted a couple of weeks for me off and on. Maybe as much as a month but it lessened each time.


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## madriiz

Hello everyone!!! Just an update...It's been 8 weeks since my RAI and have been doing great until now...I went in for labs and these were my results:
Tri-iodothyronine 155ng/dL (standard:50-170 ng/dL)
T4 Free 1.4 ng/dL (standard: 0.8-1.7 ng/dL)
TSH <0.01 uIU/mL (standard: 0.10-5.50 uIU/mL)
My endo says there still is no worry that my TSH is still low as long as my T4 and T3 are normal. 
I unfortunately got bronchitis about 5 days ago but about a week and a half ago my pulse started to go up and my heart palpitations have been stronger. I was lowered to (1) 20mg pill of propranolol 3x a day. I emailed my endo because I'm wondering if I have to raise my propranolol again. 
Other than the palpitations and the bronchitis I've been doing great!!!! I wouldnt go in for labs for another 4 weeks  so we'll see until then again. This is the hardest "waiting game" ever. I'm so ready to go on my meds but until then "patience is a virtue"! Will keep everyone updated...Thanks!!!

~Madriiz


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## Andros

madriiz said:


> ooops! lol sorry for the cut off prev post but my results are as follows:
> Tri-Iodothyronine Total 157 ng/dL...standard 50-170 ng/dL
> Free T4 1.2 ng/dL...Standard 0.8-1.7 ng/dL
> TSH 0.03 uIU/mL...standard 0.10-5.50 uIU/mL
> 
> I asked my endo about my TSH still being so low and he said that it takes longer for that to be in the standard range. He said that since my T4 and T3 are in the normal range that I am not hyper anymore even though I still have mild symptoms once in a while (anxious feeling). He did tell me that it takes 2-4 months until I go hypo so just as these 4 weeks went by fast I am hoping the next will as well.
> 
> I go for labs again in 4 weeks and will keep everyone posted. Thanks!
> 
> ~Madriiz


You sound really good!! I am glad!! Interestingly, my TSH is always 0.03 with few exceptions. As long as the FREE T3 and FREE T4 are where they should be; no problem.

I am surprised that your doctor did a Total 3 instead of a FREE T3 as FREE T3 is your active hormone.

Keep us in the loop here and let your body heal. Go easy on yourself. Plenty so sleep, proper nutrition and so on.


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## positive

I was on Methimazole 10 mg on and off for 15 plus years. Decided to have RAI, for my doctors told me about the side effect from Methimazole. And my blood test showed that I have low white blood cell count due to the thyroid medicine. Today is my 12th day of the RAI. My hyperthyroid started to get worse on the 9th day. Fast heartbeat about 86-93, tense, nervousness and lost 2 lbs. But now, I could finally go to sleep the past two days without sleeping pills. Hopefully, I will feel better as time goes by. And I hope you feel better too.


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## Andros

positive said:


> I was on Methimazole 10 mg on and off for 15 plus years. Decided to have RAI, for my doctors told me about the side effect from Methimazole. And my blood test showed that I have low white blood cell count due to the thyroid medicine. Today is my 12th day of the RAI. My hyperthyroid started to get worse on the 9th day. Fast heartbeat about 86-93, tense, nervousness and lost 2 lbs. But now, I could finally go to sleep the past two days without sleeping pills. Hopefully, I will feel better as time goes by. And I hope you feel better too.


You will feel better. Sounds like you had what we call a "dump" which is excess thyroxine in the system.

How does it feel to get some sleep? I thought that was the very best thing that happened to me after having no sleep for many many years!


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## madriiz

Hello everyone!! Long time since I've been on here I know...But I've been doing well. My October labs werent much different than the ones i had at the beginning of September :/ I went back last week and I am finally hypothyroid!! My labs:

TSH: 7.59 uIU/mL (0.10-5.50 uIU/mL)
T4 FREE: 0.5ng/dL (0.8-1.7 ng/dL)
TRIIODOTHYRONINE - TRUE,SER/PLAS,QN: 62ng/dL (50-170 ng/dL)

My endo emailed me right away to let me know that my Rx was ready at the pharmacy. I picked it up yesterday and I didnt know I had to have an empty stomach (I had just had a huge breakfast!) so I started it today. I am taking Levothroid (for Synthroid) 75MCG (0.075 MG). He said we would start me off at this dose and I have to go in for labs in 6-8weeks to see if it needs to be increased.

I am so excited to finally be able to start my thyroid hormone replacement. It took 4months and a lot ( and I mean A LOT) of patience. I know it's hard because I went through so much hair loss and weight gain that at times I would feel really down but I knew this day would come sooner or later and am just so happy that it's finally here.

To anyone else going through this, chin up. It may seem like there is no hope but soon enough you will see that light at the end of the tunnel. Just have lots and lots of patience.

I will keep everyone posted with any updates!!!


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## Andros

madriiz said:


> Hello everyone!! Long time since I've been on here I know...But I've been doing well. My October labs werent much different than the ones i had at the beginning of September :/ I went back last week and I am finally hypothyroid!! My labs:
> 
> TSH: 7.59 uIU/mL (0.10-5.50 uIU/mL)
> T4 FREE: 0.5ng/dL (0.8-1.7 ng/dL)
> TRIIODOTHYRONINE - TRUE,SER/PLAS,QN: 62ng/dL (50-170 ng/dL)
> 
> My endo emailed me right away to let me know that my Rx was ready at the pharmacy. I picked it up yesterday and I didnt know I had to have an empty stomach (I had just had a huge breakfast!) so I started it today. I am taking Levothroid (for Synthroid) 75MCG (0.075 MG). He said we would start me off at this dose and I have to go in for labs in 6-8weeks to see if it needs to be increased.
> 
> I am so excited to finally be able to start my thyroid hormone replacement. It took 4months and a lot ( and I mean A LOT) of patience. I know it's hard because I went through so much hair loss and weight gain that at times I would feel really down but I knew this day would come sooner or later and am just so happy that it's finally here.
> 
> To anyone else going through this, chin up. It may seem like there is no hope but soon enough you will see that light at the end of the tunnel. Just have lots and lots of patience.
> 
> I will keep everyone posted with any updates!!!


So good to hear from you and to share the happy news with you as well!! Soon you will be feeling a whole lot better.

Keep us in the loop; inquiring minds want to know!


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## positive

Tomorrow will be my 4th week of RAI. The past weeks were not quite pleasant for me. My hyperthyroid got worsen than before I had the RAI. My endo let me take 10mg of Propranolol twice a day. My fast heartbeat was under controlled. But I had been losing weight, about 4lbs. I will be seeing my doctor on 10/19. Will let you know what is going on with me.


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## GD Women

Hey positive, its past 10/19 - how did your dr appointment go?

How is the fast heartbeat that was under controlled and weight loss that wasn't.

Hope all is well.

Be positive


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## positive

Hi,GD, thanks for the concern. My doctor who gave me the RAI told me that I am still hyper. I also went to see my endo, he asked me to increase my dosage to calm down my heartbeat. So right now, I just have to wait......will keep you updated.


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## madriiz

Positive - it is a long waiting game but hang in there!!! It took me 4 months until i went hypo so keep the faith  in the meantime hugs2

Ok so it's been 2 weeks since i started my dose (75 MCG) of Synthroid and just last week i started to get a fast heart rate ususally in the evening of 105bpm. Today I started to feel some palpitations  Could my dose be too high or is it too early to tell?

I sent my endo an email last week but he said he suspected it was my body getting used to the Synthroid but to let him know if it continued.

Any thoughts or insight? Anyone else go through this? Let me know. 

Thanks!


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