[elf]

#1066945

Yes, I think (and heard) it’s possible to have "too much" thyroid replacement. And since it takes 3-4 weeks for a new dose to accumulate and settle in the system, this seems to be the right time the new dose would start manifesting itself.

On the other hand, for the last couple of years I have had low TSH < 0.01, but no symptoms. My free Ts are normal, and I feel fine. Please insist on measuring your free Ts in the post-RAI state more so than just TSH. TSH goes wonky in some post-RAI people, but as long as free Ts are OK, people feel fine.

[ewmb]

#1018764

Just wondering for those who had RAI and had to go through getting levels right…….. Did you ever feel really hyper again on your replacement hormone. If so how long did it last? Was it something that you had to go through to get your body to recognize normal levels?

If you did go hyper again on the levoxyl how long did it take to come back down to normal levels?

My current dose is 75 mcg. I’ve only been on it at all since September. Had RAI in early May of last year. Took 4 months to go hypo. My last TSH was still high 26 I think so they raised my dose to 75 mcg. That was only a month ago.

I just don’t feel well. Had some bad tremors the other day. My feet were really sweaty this morning. My pulse and BP have been up some too. Just feel that something isn’t right. I know you have to let your body adjust but can’t help wondering……….

Any advice would be helpful. I’m not supposed to get blood work done again for another 4 weeks.

ewmb

[Bobbi]

#1066946

One poster to this board, long ago, felt hyper every month at the same time with respect to her menstrual cycle. She would go in to have her blood tested, and find out that her thyroid levels were normal. So, it is possible to feel hyper symptoms, and not "be" hyper. I have gone in, feeling hyper, and had my blood tested, and found it to be smack dab in the middle of normal. Other times, I’ve gone in and found out that I am, indeed, hyper. So, my opinion is that we cannot always tell where our thyroid levels are by how we feel, even though we know those hyper symptoms so very well.

My endo made a point of telling me, early on, that to test the blood too soon could lead to yo-yo hormone levels (up and down, up and down, up and down). She recommends waiting a minimum of six weeks between blood tests when an adjustment has been made to the replacement hormone dose. She prefers to wait three months. The one time we did not follow that recommendation, I did indeed start to yo-yo, briefly. So, I guess what I’m trying to say is that when we are adjusting to a replacement hormone dose, it is really important to be patient. By all means, if the nasty symptoms keep up, call and talk with your doctor’s office nurse. But if they want you to wait, there is a good reason.

I hope you are feeling better soon,

[ewmb]

#1066947

Thanks for the replies. I am near when my period should show up and have always had worsening of symptoms during that hormonal shift too. I was told that I am going into menopause too by my GYN last year so that probably isn’t helping. I will try and ride this out for the next four weeks until 8 weeks from the dose change to the blood work. I will say that this will be the longest I’ve gone between testing since I started levoxyl. I think that my endo wanted to bring me up slowly and he did but I got tested every four weeks for the first three months.

I’ll keep thinking good thoughts. Any more experiences like mine would be good to hear though.

ewmb

[runlacie]

#1066948

ewmb, it shouldn’t surprise you to know (since we have been like twins through this whole ordeal) that I feel very much the same way. Supposed to be taking 75 mcg but it’s making me too hyper feeling. HR up, warm feeling, jumpy, anxious, the whole ugly deal. And yes, it’s worse just before TOM. I have "forgotten" to take my pill when I feel too hyper. It helps. And the past few days I’ve been taking the leftover 50 mcg pills instead of the 75’s. I don’t feel like calling the doctor and getting chastised for it. So I guess I’m going to just see what my next labs show and go from there. Shame on me for not just calling the doctor to begin with but I’m so sick of the whole ordeal and just want to get on with my life, I don’t feel like dealing with them. Plus I’m mad because my new insurance has a huge deductible and now I’m paying for all of the labs myself until I meet it. It’s a bummer.

[ewmb]

#1066949

Lacie,
Sorry to hear that you are having the same troubles. I think that because of our ages we are at risk of great hormone fluctuations from estrogen etc.. That isn’t helpful at all I know but I guess if I can get through hyper I can get through menopause as well. I didn’t think of lowering my dose on the days I felt so bad. I am going in a few weeks to get another blood test for levels. Hopefully it will show that I am getting there for normal levels. How goes the weight issue? I am up a few pounds from the holidays! Guess it’s just something to live with for now until I get more settled levels. I am still trying to do better. Hope that you are feeling some better when you read this.

ewmb

[Ski]

#1066950

While you may think you feel better by taking less or "forgetting" your pill on the day you feel hyper, in the end you’re really just complicating things for yourself and for your doctor. The fact is that we metabolize the replacement hormone very slowly, and not taking it for one day would not result in any particular change that day. All it will do is reduce the overall amount you’ve taken that week, and then it makes it nearly impossible for the doctor to manage your levels. If they know you’ve taken the replacement as prescribed, then your labs mean something. If you haven’t, they really can’t tell what’s going on and they may well "over" prescribe replacement because you’ve been meddling in the middle. I don’t mean to be a secondary "chastiser," but it really isn’t to your benefit to play with that.

[ewmb]

#1066951

Ski or any other facilitator,
Can you explain to me what happens when we are on hormone replacement with regard to the way our bodies use the hormone now as opposed to when we had a regular working thyroid? I know that when I had a normal thyroid years ago that my levels were regulated by need and supply went up and down to meet that. Now that I am on a constant dose, so to speak, is my body still regulating somehow the use of a certain amount a day? You said that the hormone will build up in our systems slowly. Does that mean that we are using up a constant amount a day and that taking the 75 or 50 mcg or whatever dose is enough to keep us "just normal" or are we at some point adding to a big pool of hormone that hangs around waiting to be used?

I’m just really frustrated that I am feeling hyper symptoms again. It’s only been the four and half months on any hormone so I realize that it’s not been long enough to really tell if I am getting settled. Waking up in the morning with symptoms really throws me for a loop and I get discouraged. Trying hard to believe that this will all work out in the end but this morning it doesn’t seem like it will.

Thanks for all the help.

ewmb

[Bobbi]

#1066952

Thyroxin (T4) — and by extension the replacement hormone levothyroxin, because it is chemically identical — has a half life of six and three quarters DAYS. That means that after just under 7 days, half of the dose that we took 7 days ago is still viable in the body. (That’s how hormone life is measured, in half-life periods.) So, when we take replacement hormone any that we do not use today is "saved." The dose of replacement gradually builds up until we’ve got a reservoir that is more or less consistent. What we don’t use one day is saved; what we use excess of another day can be taken from the reserved supplies. That’s a simplification, obviously, but I think it gets to the gist of things.

As to whether or not you might be experiencing hyperthyroid levels of hormone while on replacement, the obvious answer is "yes." But to find out definitely, you would need a blood test. I actually had an episode of toxic levels of thyroid, while on replacement, about four or five years after starting replacement hormone. I had been on a constant dose for a year or more, and all of a sudden (and for only a few months) it was suddenly too much. We do not necessarily lose every last thyroid cell with our RAI treatment. Any that are left are still producing hormone and can be revved up by elevated antibody levels. So, when in doubt, get your levels checked. Not every episode of "hyperness" that I’ve had checked out through the years has proven to be "real" (i.e. actually way too much thyroid hormone), but being hyperthyroid isn’t safe, and getting things checked when it feels all wrong is an easy way to either fix things, or get reassurance.

[runlacie]

#1066953

Very good info, thanks Ski and Bobbi. Kind of reinforces what I already knew and helps it to make sense. I know I’m not helping by not calling the doctor and I guess I should do that. But if I’ve been taking less for just one week then going for labs now really won’t help, I’d have to take the lower dose for a longer period in order for it to be accurately reflected in my labs. And I can’t afford to pay for tons of labs now that my insurance is making me meet a crazy deductible first. I know I’m not as hyper as before RAI, and maybe my levels could even be "normal"- just not normal for me. I feel exactly like I felt in the months where I was slowly going hyper when I didn’t know I had Graves’ but was getting all of the symptoms. I guess I should just call and tell them what’s going on and also that I want to just take this dose (50) or even less (since I still feel hyper) and go for labs in a couple weeks. I really thought once I had RAI all this crap would be done with and I could just happily take my little pill everyday and enjoy a nice normal life. On the positive side, my body feels very strong again and I have incredible energy… but my HR is slowly creeping up and I can feel the jumpiness coming back. Anyone else might not even notice the slowly increasing heart rate, but because I monitor and track it for my running, I’m seeing it happen.

[Ski]

#1066954

Hi Lacie,

Just remember, it shouldn’t jump out of control again like it did before you knew what was going on ~ you are taking a controlled amount of thyroid hormone, and since you went hypo, you can presume that a good deal of your thyroid is completely nonfunctional. Just keep a smart eye on things, like you’re doing.

[ewmb]

#1066955

OK,
Got my 6.5 week labs back and my TSH hasn’t budged. Still at 25. something. Does that mean that my awful symptoms are still being caused by too little hormone being available? I am having awful muscle pain now and am having to take naps again in the afternoon. Still really cold a lot, though sometimes I am really hot. I thought that was the heat being on too much in my office. I thought I might be getting too hormone much but the test certainly says otherwise. Should I ask to be bumped up more than 12.5 mcg again? My FREE T-4 didn’t get done for some reason so I don’ know if that is in normal range. My other numbers that I didn’t ask for like T3 free thyroxine etc. have moved back into normal ranges. I am on 75mcg now and since it didn’t move any in the past six weeks and the number was actually just slightly lower, 23.something, after my time on 62.5 mcg as well, I really think I need a bigger jump. Has this happened to anyone else as they try to get settled on a dose of replacement? I know they like to be cautious but I am tired too much and hurting too much for my liking now. Won’t hear from the endo until next week.

Thanks,
ewmb

[Ski]

#1066956

Sorry, I know it’s no fun, but you really do need to take your time adjusting to new doses, and you need to move slowly up the dose ranges. It MAY be possible to talk your doctor into a dose change after four weeks, especially when you’re feeling so awful, but any more often, or any more at once, can throw your body into another tailspin.

More than likely your cramps and discomfort are a result of being hypothyroid right now ~ if any of your symptoms concern you a great deal, please do check with the doctor, because we sometimes end up blaming everything on our thyroid when that’s not always appropriate.

You’ll get there, I PROMISE! ” title=”Wink” />

[ewmb]

#1066957

Heard back from my endo today after I sent a fax with all my symptoms, lab results etc.. I even added my phone number and the phone number of the drug store etc. so he wouldn’t have to look anything up and it worked! He got back to me post haste. He said that my thyroid is still loosing function and not catching up with my replacement hormone levels. He is taking me from 75mcg to 100mcg for 6 weeks and then more labs. Hopefully this will start to make me feel better soon.

ewmb

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