[enough3]

#1067299

From what I understand, it is common to go on the anti-thyroid drug after ablation…just for a short period of time until you start to go hypo.(helps keep you level) It could take 1-3 more months to see a shift in your labs. That is totally normal. Everyone is very different. Some go hypo as soon as 4 weeks…and others sometime up to a year.

You T4 looks good…..if it was way up there I would be like "give me the anti-thyroids…” title=”Smile” />"

When my t4 is really high…that’s when my symptoms are out the roof….I have had 0.001 tsh and normal T4 and managed through it…although it was not too fun….Go with what you Dr. suggests. You Endo does sound a little overloaded…but that is up to you if you want to switch.

I don’t know too much….hope I helped.

[SeeSallie]

#1067300

Thanks enough3. Every input here is helpful. In fact, I don’t mind if someone disagrees with my view on this…I wanna hear it.

[ewmb]

#1067301

I think it’s too soon to say it didn’t work. My numbers went south on me too after RAI and I went back on methimazole for a short time to help me cope. I had been off for almost 11 months at that point. It took me four months to show that I had gone hypo. Keep thinking about how you feel right now and your numbers will hopefully come in the way you want them to in a few more months. I know from experience that it’s really hard to wait though.

ewmb

[SeeSallie]

#1018818

Am I missing something here? I had RAI 4 weeks ago today.
Dr. said it was surprising to hear I am so tired. I feel run down…not just a little tired (my energy is zapped). I love waking up at 6 am again, so it isn’t debilitating. I’m in bed by 8 or 9…so that should be enough rest, but it isn’t

Then I got my results today (tested at 3 and half weeks post RAI):

TSH: My result: 0.00……Normal Range: 0.47 – 5.01
(she said pituitary hasn’t kicked in yet and that might explain why my tsh is so low. That will be checked again in 2 months.)

T4: My result: .98………..Normal Range is 0.71 – 1.85
(I am very happy about this number but realize I may be going out of range as more time passes. Not sure I understand though if it should go up or down now that I have had the RAI).

Ok, so no synthroid yet. I understand we need to see more results over time. But Dr. said we might put me back on methimazole (I’m sure I misspelled that) in a couple of months if I start feeling hyper again. Then I reminded her I never was on it. She stopped with a confused look. "YEs you were. Weren’t you? Wait, Why didn’t we again?" she asked. She actually asked ME!
Ugh…I was struggling with the same question back in October but she said she felt radiation was the best route. This is the 3rd time she got confused on my case. And anyway, I assumed that I would just get another RAI if things started going hyper again. Never expected meds unless it is synthroid due to hypo.

I’m not feeling very secure right now.

So I might be put on the hyper meds in time (I guess if the 8 mci wasn’t enough?) and then if that doesn’t work…she will suggest another RAI. I don’t want the methimazile meds. I feel if we went this RAI route, then let’s continue it.

I am suppose to be going hypo and then put on synthroid. This is what she and I discussed. I’m confused why now there is a change in the plan. Is it maybe that she too is doubting the 8mci took? I have no problem with doing another RAI…I do feel suspicious about being put on a med to control hyper in between this and then a 2nd RAI though.

Sallie

[hockey]

#1067302

Hi Sallie,

I too recently had RAI done (Oct 2nd), and am wondering where the roller coaster ride is going to go next – up or down? Initially (10 days) post RAI my numbers (t3/t4) were down, then at 3 & 5 weeks post-RAI, they have gone up – to levels that are higher that they were prior to getting the RAI done. It’s VERY frustrating. Unlike you, I don’t want to do another RAI if this one didn’t work, so I’m not sure what I will do.

All I can say is who knows … from this board, it’s helped knowing there is a period of ‘dumping’ as well as learning that it’s not an overnight thing where your numbers will go down >> wish my endo had said something, anything, to that regard, however, maybe it’s better getting the information from first-hand experience rather than his ‘text-book’ details.

I wish the whole process would happen faster or there was something I could do to speed it up – guess that’s one of the problems with Graves, we’re just go-go-go. It’s no fun feeling rotten.

Sallie – you mentioned that you feel drained … so do I … I’ve just felt so tired, and unmotivated since taking the RAI. I’m not sure why. It feels like the fight or flight response has just disappeared and if I needed to do something quickly, I wouldn’t be able to. I’ve felt like I just don’t have any fight left in me, I don’t want to argue with the kids about are the toys picked up yet, or it’s time to get ready for bed, or if my husband has put something in the wrong place – I just don’t care anymore, or even feel capable of fighting. With that said though, the last few days it feels like it’s coming back – likely b/c my numbers are so high. My GP figures all the chest pain/tightness, shortness of breath etc. I’ve had in the past 2 weeks is due to thyroid – just wish endo had given some guidelines prior to RAI as to what to look out for (or maybe that was the nuclear dr’s job, however that dr. had left the hospital prior to my RAI, it was a nurse I dealt with).

Good luck with your next test results. Hopefully you can figure out your endo too – it must be upsetting when THEY can’t keep things straight regarding treatment options/plans as they are the ones who are supposed to be guiding you so that you can make an informed decision.

[SeeSallie]

#1067303

Hockey- yep, that’s me too. My kitchen table has been piled for days with papers, crayons, a used cup of water…I just don’t care. I look at it and know I should clean it up…so I do, eventually. I feel no sense of urgency. I wake up and get the kids ready for school, then come home and listen to NPR for an hour, eat breakfast, do some work online (I am able to work from home thank heavens) and so goes my day. I was never laid back like this…maybe this is what I needed to be like before because I now question why I was always so ready to jump in and do 5 things at once??
Dr said she thinks this is just my body getting accustomed to being normal again (I am in currently in normal range) because I was accustomed to being Hyper for so long. So I guess. I gladly trade to this from the hyper. I do wonder why I worried so much over things in the past.

Good luck with your tests too.

Sallie

[SeeSallie]

#1067304

ewmb, Are you on synthroid now? If so, How long after your RAi did you start it? I had a serious misconception about all this I can see. I thought I was going to be placed on synthroid immediately. Or is this another one of those, "everyone is different" scenarios and so SOME might be on synthroid in mere weeks after RAI??
” title=”Confused” />
Sallie

[ewmb]

#1067305

I don’t know about others but I took four months to get numbers that suggested hypo. Then i started replacement hormone and have gone up from 25 mcg, to 50mcg, to now 62.5 mcg. I am having blood work done every four weeks as my levels change. I haven’t heard of anyone here that I can remember that didn’t take 2-3 months to get some numbers that suggested hypo. One of the facilitators might know about the time line.

ewmb

[bluesky]

#1067306

Based solely on my experience and the information I received from my endocrinologist, four weeks is too soon to have adequate results on the effectiveness of RAI. My doc doesn’t even do the first post-RAI testing until six weeks out.

I don’t want to generalize about everyone. You can see from my other posts here, that I despise when people post using "we" and "us" when they mean "I" and "me," so this is just my experience. I hope sharing it is helpful.

[beachkat]

#1067307

yes I too was told to wait at least a month for blood tests as I wanted to go for a blood test after 3 weeks and the endo said that was too soon, and there would be no change that soon… I am going one month out on the 19th, having had the RAI on the 18th of December. I feel "OK", but my heart still is racing which I thought would lessen by now…

Why hasn’t it?
Does that mean that the RAI isn’t working?

I want first and foremost to get off these beta blockers but the cardiologist said my metabolism is still fast…. when should I be noticing some marked difference after the RAI? will anything different show up in the blood test after a month? I have booked and want to get monthly blood tests at the very least to see and know what is going on…. any input would be very appreciated, I am totally new and totally ignorant about all of this…. I just want to get back to my usual exercise routine and that is all I am thinking about, and I want this to hurry up at least to get my normal heart rate back! thank you .

[Ski]

#1067308

It can take up to six weeks just for the excess thyroid hormone you had in your bloodstream to be flushed out, so this soon after RAI, you wouldn’t necessarily notice a marked difference. Wait until the six week mark at least before you start to wonder whether it worked ~ then remember that the RAI does the bulk of its work in the first six weeks, but has potential to affect thyroid tissue for up to six months.

We all understand your desire to get back to a normal exercise routine, but at this point you simply must practice patience. You have begun treatment, but your thyroid hormone levels are probably still not normal yet, and that’s the point at which your body can BEGIN to heal from the onslaught of hyperthyroidism. Until then, your body is still trying to react to the emergency situation it perceives from elevated thyroid hormone levels, and then the rapidly declining thyroid hormone levels. Even though that’s moving in the correct direction, your body still reacts as though you are going through a life threatening event, because in the natural course of things, thyroid hormone just doesn’t plummet like that for any reason.

Once your thyroid hormone levels are normal, AND stable, your body tissues will START healing from the hyperthyroidism. That can take some time as well. You should be able to get back to some exercise once your heart rate comes down and your thyroid hormone levels are normal, but you should definitely check in with a physical therapist first and have yourself evaluated for muscle strength and stamina so that you don’t overdo right away. You won’t be able to return to the exercise routine you had before. You’ll need to build up. You may need to build up far more slowly than you’d like, but safety first. ” title=”Wink” />

As in all things Graves’ ~ patience is a key concept.

[enough3]

#1067309

hang in there..SKi is right. It takes at least 6 weeks. I regret getting my blood work done at 6 and 8 weeks..because it’s just too early to tell. I’m at 9 1/2 weeks POST RAI. Tomorrow I get my blood work and I KNOW that I’m starting to go the hypo way. It may be only a little yet..but I know that my tsh is not 0.0000000000 LOL. This past week is the first week since week number 5 that I have not had a racing heart, 20 bowel movements a day, and all the other hyper sympotms. I know that these labs will start to paint my picture of how ablation took to my thyroid. Which, I think went well becasue my goiter is officailly disappeared:)

Weeks 5-8 were HELL. But, thank the Lord..I think the worst is over.

[Author]

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