[Suz01]

in reply to: RAI 14 WEEKS AGO #1062027

Sorry to hear you are going thru a similiar experience as me. I’m at 20 weeks post rai now and had blood work done yesterday.
TSH still 0.01 and free T4 is 2.44 . Last endo appointment he said free T4 levels should be doing something at this point but not.
I have an appointment with a surgeon from the UW hopsital in Madison Wi on June 20th, will find out then when surgery will be. Although I’m still on beta blockers, pradaxa and methimazole I have been feeling good. Hope after surgery I don’t feel worse again.

[Suz01]

in reply to: The past 2 days I can’t stop crying #1061797

Thanks for responding, it does help to know your not in the boat alone. Today I’m feeling better but don’t have any patience for things. I had blood work done last week and my free T4 was 2.42, normal range .7-1.48. I had 10 mci Jan 20th and if I’m still hyper at the 6 month mark, going to have surgery at UW Madison. I don’t want to have a 2nd rai and my endo is in agreement. I didn’t realize that there were people that were still hyper as myself this far out from rai. Seems like when I have read the posts, people say they go hypo at the 1, 2 and 3 months. Makes me feel better knowing I’m not the only one its taking forever or at least it seems its taking forever. I’ve gained 40 lbs thru all of this and I can’t lose it. I use to be very sociable but seem to stay at home most of the time now. It’s nice to have people with this disease that you can relate to, other people just don’t understand the emotional effect it has on you. Have a great weekend everyone!

[Suz01]

in reply to: The past 2 days I can’t stop crying #1061792

Thank you for your kind words. I’m also so tired the past few days I feel like I’m walking in circles. Could this be a sign that I might be going hypo? If my free T4 was 2.42 just a week ago could it be changing this fast? I had rai 4 months and one week ago. Another symptom I started having is like something is stuck in my throat when I lie down at night to go to sleep. I slept part way sitting up last night. Just been feeling lousy this week. Thanks for listening.

[Suz01]

in reply to: Not much has changed #1061867

Hi Ski,

The normal free T4 range is .7-1.48. I called the UW endo clinic in Wisconsin and pre-registered. The woman I spoke to said to have my endo fax a referral to them. So talked to the nurse, she said he would be back in the office Monday and she would have him send one. They have 2 surgeons in the department and do approximately 300 to 350 thyroidectomy a year.
Its alittle over an hour drive from me but I would like to go ahead and have my consultation so if I haven’t gotten in normal range at the 6 months mark I can go ahead and schedule the surgery.
Hopefully I won’t need surgery but if I do, want to be ready.

Also from earlier post, its weird sometimes I feel very tired and other times I feel hyperthyroid. I really don’t know what it all means.

[Suz01]

in reply to: RAI 14 WEEKS AGO #1062013

Thank for the answer! Do you know what the normal free T4 levels are?

[Suz01]

in reply to: lab results from yesterday #1062228

Thanks for the reply. I’m on pradaxa because of the afib. If my levels ever get stable the cardiologist said I won’t need the beta blockers or pradaxa anymore because my heart is strong. I really wanted the surgery back in Jan and not the rai but my endo was against it.
Do you think there is still a chance that I’ll go hypo or am I just putting my time in to get to the 6 months post rai?
So far I feel the rai I had in January was a waste of time.

[Suz01]

in reply to: I have some questions #1062235

Thank you for your response Shirley.
I am 53 yr so done having kids ( I have 5). I see a cardio and endo dr. I had a consultation with a surgeon yesterday and he said need to let the rai treatment 2 to 3 more months to work. I asked him his experience and success rate and he told me he’s performed over a 100 and have had 2 cases in 20 yrs that had complications.
My endo said from weeks 12 thru 18 is when then rai does most of the work. I was surprised because people on here in general have gone hypo before that time frame.
I’m almost certain that I am still hyper but if I get my lab results tomorrow, I will post.

[Suz01]

in reply to: Hello, Warriors. Rapunzel is back: Hair loss? #1062328

I’m 10 1/2 weeks post rai and still hyperthyroid. I was at the endo yesterday and he said he thinks it will work but if not surgery will be an option. I have a couple questions. What is the best way to choose a surgeon that is experienced in thyroid surgery? Also, my hair is falling out too and I was wondering if anyone has tried women’s rogaine and did it help with the hair loss?

Have a nice day!

[Suz01]

in reply to: question about methmazole #1062550

I talked to the nurse today and she said the endo said stop the methmazole. Also, my free T4 was 0.99 from blood work done March 3rd. I get the free T4 checked again on March18th. Where is that in the "normal" range?

Thanks for the replies!

[Suz01]

in reply to: Post-RAI Day Two #1062652

Good to hear you are doing well. I had the same dosage of rai 31 days ago. I had blood work done last week and endo reduced methmazole from 30 mg a day down to 10 mg, I was glad. I see him in 6 weeks and at my request going to get blood work done every 2 weeks until then to check T4 levels. I go back to see the cardiologist Wed and hopefully get off these blood thinners and beta blockers at least decreased. Getting better from this disease moves at the pace of a snail!
Only reaction I had from the rai was after a few days my face and finger tips peeled alot.
I’m just tired of the weight gain, I was one of the people that gained weight not lost it and never had to worry about trying to loss weight before.
Hope everything keeps going smooth for you, glad I had rai also.

[Suz01]

in reply to: After Rai and methimazole #1062745

Thanks for the reply. So far post rai has been uneventful which I’m glad about. I have gained 30 lbs since July ( was diagnosed in November and admited to the hospital). I thought the weight gain could be because I quit smoking.
But part of that 30 lb has been since I started meds. I lost 8 lbs (not trying) when I went off the methimazole the week before rai but gained it back after starting it after rai. I haven’t been on a diet but trying to get motivated to start.
Before rai I was having alot of muscle cramps but haven’t had any after. I started a new job a couple weeks ago and haven’t really had time to think about all this graves stuff. Will be glad to get off the methimazole at least.

But like I said, the only thing I had after rai was peeling of my fingers and face.
I will post after Dr visit on the 23rd. Think I’m going to ask him what he thinks about getting blood work done every 2 weeks at that point.

Have a good night!

[Suz01]

in reply to: RAI and pets #1062946

Good Luck! I’m going in for rai on Thursday, it was Friday but had to change the appointment. How much methimazole are you taking after rai?
It’s been nice not taking it for the last 6 days, my stomach was so bloated on it that now it has gone back to normal.
Sure wish I didn’t have to take it anymore. But hopefully will only be for a few weeks.
So glad to get the rai over with and off that medication.
I don’t have an appointment for 5 weeks after rai, if I start getting hypo symptoms I will go to my Dr and have blood work done before that.

Anyone else get terrible muscle cramps or did in the past? I had one yesterday near my heart and at first thought I was having a heart attack! Endo said it’s because thyroid levels are changing. Sometimes I just move a certain way and get them, very painful.

[Suz01]

in reply to: RAI and pets #1062944

I’m just wondering why he’s keeping me on such a high dose of 30 mg for so long after Rai. Guess I’ll play it by ear, it’s so hard to get answers from endo’s office that if I start having hypo symptoms before 5 weeks I’ll call my gp and ask about getting blood work done early. They can then fax results to endo if needed. I don’t go back to cardiologist until 5 weeks after rai either. Hopefully will be at the point to get off blood thinners and lower dosage of beta blockers.
Per cardiologist, haven’t been able to do anything to raise my heart rate for over 2 months, can’t wait to start taking walks again and lose all this weight I’ve gained. I’m looking forward to RAI and getting back to normal whatever that is!
These muscle cramps have been out of this world this last couple months!

[Suz01]

in reply to: RAI and pets #1062942

Thank you Bobbi. I have another question: after doing Rai ( 2 days after) the endo is putting me back on 30 mg of methimazole a day until I see him again which is 5 weeks after rai. Does that sound right? Shouldn’t my blood work be done again before 5 weeks? I’m also on beta blockers and blood thinners which I’m staying on same dosage too after Rai.

Thanks again!

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