[MilkMoney August 2, 2012 at 7:23 am Post count: 6]

#1059247

Hi all. It’s been awhile since I’ve been on here. Diagnosed in May 2011. Had RAI in July. Started levothyroxin 125 mcg in October. Levels had been normal and felt fine until about May of this year. Started feeling hyper again. Sweaty, shaky, insomnia…reduced dose to 112 improved for a bit. Now, I started feeling really shaky again. Had my labs done and TSH is still really low. Endo has reduced Levothyroxine down to 100 and I’m supposed to have labs done again in 6 weeks.

Now, I have been feeling so bad/shaky/sweaty that I haven’t even taken a pill in a week now. So…I’ve been getting 0 mcg for the last week and my symptoms have not improved at all.

My question is this. Is it possible my thyroid regrew and I will need another round of RAI? It would seem to me that after a week of taking no meds that I should be starting to feel better. Instead I have all the classic Graves symptoms again, just like before I had my RAI. The last time I asked my endo on the phone about this she said that is not the issue. She said she is positive the RAI worked because my levels in early October before I started the Levothyroxine were basically showing a dead thyroid. She said all we have to do is lower the meds down and find that balance again.

I’m not so sure considering I haven’t taken any meds at all in a week and still feel terrible. Anyone have any experience or advice you can give me?

[gatorgirly August 2, 2012 at 8:04 am Post count: 326]

#1173333

Yikes, I would not stop taking your medication without a physician’s approval, but you’ve already been doing that for a week so now it might take even longer to level out on the correct dose. Sometimes, people are on the same dose of replacement for years and for one reason or another, suddenly need a higher or lower dose. You haven’t been on it that long in the grand scheme of things, so I don’t think it’s uncommon to still be trying to find the right dose. I’ve been on Synthroid for one year exactly, was still on the hyper side at first and now I’m at the opposite end and significantly hypo. We only get labs every six weeks because replacement hormone takes several weeks to adjust levels, and because TSH lags.

I think you need to call your endo ASAP, tell her your symptoms feel out of control, and you need some immediate relief. You may just have to wait it out and let the drug do its job like we did when we were diagnosed and first began ATDs. Being hyper is no fun, but not treating your hypothyroidism is even worse and harder on your body than it may feel. Stopping the replacement won’t immediately alleviate your hyper symptoms (which is why you still feel hyper) but it is not a good move to make without speaking to your endo.

I can’t answer your tissue regeneration question but please call your doctor ASAP.

I’m sorry it’s been such a long, arduous process for you to find the right dose. It has been for me, too. In exactly 12 months, I’ve gone from 100 mcg to 75 mcg to alternating 50/75 mcg back up to 75 mcg and now I am on 88 mcg (for the last two weeks) and still hypo but slowly getting back into normal ranges.

[MilkMoney August 2, 2012 at 9:12 am Post count: 6]

#1173331

Yeah. You’re probably right. I just took a pill. It just seems so counterproductive ya know? I mean, I obviously have too much T4, as the lab work shows, but yet I’m putting more synthetic hormone into my body?? Just doesn’t make sense. Seems like I’d be better off not putting any in my body until it levels out some. But…what do I know. If that were smart my endo would have told me to do that.

[gatorgirly August 2, 2012 at 9:19 am Post count: 326]

#1173332

I don’t want to feel like I was chastising you or demanding you take your pill. I completely understand why it feels like it would be better not to take anything when you feel this way. I think the first call needs to be to your endo to fill her in on the latest symptoms and lapse in meds. Then maybe you need to get a second opinion or switch endos if you feel like this one isn’t listening to your concerns – which are completely valid, by the way.

I hope you feel better soon. Hyper is such an uncomfortable feeling.

[KimberlyOnline Facilitator August 2, 2012 at 12:59 pm Post count: 4294]

#1173334

If there is remaining living thyroid tissue after RAI, it’s rare, but the tissue *can* regenerate and cause a recurrence of hyperthyroidism. However, the more common scenario is that patients find that their need for replacement hormone can change over time, so a dosage adjustment might help.

However, as gatorgirly noted, making a dosage adjustment on your own without labs can actually set you back instead of making you feel better, so I would definitely call your endo’s office ASAP and ask for new labs. If your schedule is flexible, ask to be placed on their cancellation list, which can potentially get you in sooner.

Take care!

[Bobbi August 3, 2012 at 5:12 am Post count: 1324]

#1173335

One thing to keep firmly in mind as you go forward — the replacement hormone drugs belong to a group of drugs — like blood thinners and antiseizure medications — that have what pharmacists call a “narrow therapeutic index” (NTI). For them to work properly we have to maintain a specific concentration of them in the blood. We have to have regular blood level checks to make sure that the concentration is right. And changes in how we take the meds can interfere with that concentration. Even changing from one brand to another, or from one generic to another, can alter the concentration in the blood and throw things off. It is really important to be consistent. If you change how you take the meds, or if you start taking other meds at the same time, or if you change generics (a different drug store), or anything like that, you could be changing the concentration of the replacement hormone in your blood and throwing things off.

[spenanelson August 10, 2012 at 12:40 pm Post count: 33]

#1173336

from personal experience, yes it can come back. But it is VERY VERY VERY rare. I think I was the exception rather than the rule. Mine came back 3 years after RAI and I had a second even stronger RAI four years ago. I now get regular scans and lots of blood work. So far it has not come back and they think they got all the rouge tissues.

But… adjustments of medication is the normal thing for me. It is a constant battle and most time I don’t even notice that I am high or low. I guess I get used to the craziness.

If your thyroid did come back, please get to taken care of. At first they took me off replacement, then 9 months later they put me on PTU, then 4 months later my liver began to fail and my thyroid became a monster. They more we tried to control it the more it grew and responded negatively. I would never wish this nightmare on anyone. But once again it is the exception rather than the rule.

Take care!

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