[ewmb]

#1064446

I had RAI in May 2009 and am still not at the quite right dose of replacement either. I have periods when I feel- felt hyper even when I wasn’t by the numbers. Slowly that is all going away I hope. As you said, since there are other things that can cause some of the same symptoms including perimenopause- changes in balance of hormones, know you’re not there yet but you said you were on clomid right now- that might be it. I am really sensitive to caffeine still and that can make me have palpitations and make your heart rate go up.

ewmb

[Kimberly]

#1064447

Hello – ewmb has some good thoughts. Also, you might consider keeping a symptom diary as you go through the process of finding your "sweet spot" of replacement hormone. Note whether you are experiencing palpitations, resting heart rate, any sleep disturbances, etc.. The "normal" range is fairly wide, so it *is* possible that your comfort zone is more towards the lower end.

One other thought is that I can feel hypO symptoms when my levels are *falling* — even if they stay within the "normal" range. Perhaps it works the same way with hypER symptoms when our levels are on the increase? I don’t have any medical evidence for this…it’s just a thought. ” title=”Very Happy” />

[lhc11]

#1064448

Well, I’m nearly positive it’s not caffeine (I generally drink only one cup of coffee per day, in the mornings, and have pretty much since before I was hyperthyroid [as far as I know]), and it’s definitely not perimenopause, and it’s not the Clomid because these symptoms were present before last week, though the Clomid could of course be exacerbating them. So maybe it is the levels being on the rise….or maybe my body is happier at a lower range. I’ll do my best to keep track and see.

lhc11

[snelsen]

#1064449

HI, it has been so nice to hear from you after your thyroidectomy, and to know that you had the same wonderful post op course that I experienced.
I have one question. I know you said your resting pulse was normal for you, but 19-20 BEATS PER MINUTE? Will you take it again a few times, so I don’t worry about you? If, indeed this is your resting heart rate, you should be prepared to tell everyone you encounter in the medical field, or they will want to do a cardiac workup or stick you in the CCU while they do it! That is really low, hard to think it can perfuse all those parts of you that need oxygen. A heart rate of 50’s in someone who is usually very in shape, or even in the high 40’s.

Re feeling hyper. Kimberly, Bobbi have both addressed the fact that there is hormone circulating around after surgery or RAI. So that could be a factor in your hyper feelings, and should resolve? But I have no idea how long it can take to used up the stored hormone. They will probably have things to say about this.
shirley

[lhc11]

#1064450

Sorry, Shirley, no cause for alarm! ” title=”Very Happy” /> I meant 19-20 per 15 seconds, i.e. 76-80/minute. And I’m really in good shape–but this has been my pulse rate pretty much ever since everything calmed down, except for when it dipped to 50 on the beta blockers and they had me stop taking them.

cheers,
lhc11

[snelsen]

#1064451

HI lhc11,
You made my day!!! Thanks for seeing my post and responding so quickly. I just could not get that out of my mind!!!!
Shirley

[lhc11]

#1018390

Hi everyone — so, I’m still mostly doing great (exactly two months since my surgery as of yesterday). I’ve been on 100 mcg of Synthroid since the surgery, and my labs yesterday were: TSH of .81 (range of .38-4.2) and FT4 of .93 (range of .70-1.45); when we checked four weeks ago, the TSH was .14, so it has climbed signficantly in the right direction, and the FT4 was .86, so it’s gone up only a little. My endocrinologist is very pleased. The thing is–and I have reported this to her–that I have gradually started to feel a little hyperthyroid. This is something only those who have been hyperthyroid will understand, that feeling of being just a little revved up internally, like the blood is racing too fast or something, and a little anxious-feeling (but not at moments when I’m actually anxious about something). It seems to come and go but is mostly at night and/or when I’m physically exerting myself somehow. My resting pulse is normal for me (76-80/minute) but at least last night and the night before I’ve also felt what I would characterize as vague palpitations. Now, I did also take Clomid for the first time last week, Monday-Friday (we are trying to conceive in the next few months), but these symptoms started before then, I’d say about 3 weeks ago. Last night I even took .125 mg of Xanax (leftover from my hyperthyroid period) to get to sleep, something I do not want to be doing on a regular basis (but hey, at least that little worked, considering that at one point I was taking 3-4 mg per day with little effect).

The endo’s nurse called me back about this complaint this morning, but all she did was tell me that the doctor wants me to know that we’ll keep monitoring it, and that if/when I get pregnant we will test the levels at 4-6 gestation, and that if not, to just let them know if the symptoms continue or get worse. I certainly understand that she probably doesn’t want to lower my hormone dosage right when I’m trying to get pregnant since that would risk starting a pregnancy while hypo (this is my guess, not anything I was told), but I thought she might have more to say or suggest about my current experience than that.

So I guess my question is: anyone have any thoughts about what is going on? Is it possible that with a TSH of .81 I am still a little hyper for me and that this might improve as/if that number rises (even though I no longer have a thyroid)? Or that an FT4 of .93 when the range starts at .70 is actually somehow high for me?

thanks,
lhc11

[Bobbi]

#1064452

I certainly empathize with someone having those hyper feelings, and I have usually worked closely with my endo when I’ve been experiencing them. Working closely? That means that I wait whatever reasonably amount of time the doctor suggests (six or eight weeks at the earliest) before going in and having more blood work done. Recently, my endo increased my dose of replacement hormone "slightly" and when the first blood test, after six weeks, came back, it was "normal." I persuaded her to lower the dose a tad due to hyper symtpoms, and the next blood test came back showing levels still normal, but more towards hyper than the first one — so I had been correct that time: I WAS most likely hyper after the first dose change, but the blood test occurred too soon for the TSH to have moved fully down. In other words, trust your gut until you find that it is leading you astray. it might lead you astray because there are other things that can cause insomnia, etc., but until that time, go in at reasonable intervals to be double-checked.

[lhc11]

#1064453

Thanks, Bobbi. Since my endo was clearly not about to lower my dosage yet–nor am I entirely sure that she should, at least not yet–I guess I’ll wait at least a couple of weeks to see how I feel, and at that point ask her to lower the dosage if I’m still having hyper symptoms. What bothers me is that she didn’t give me any instructions getting for future labs (i.e., didn’t put an order in), just said to be in touch if I got pregnant (and/or if symptoms persist). So it almost seems as if she was planning on just otherwise letting me go with no further follow-up on her end until whenever (next year?)…which seems odd to me when I’m only 2 months out of surgery. I wish I had *full* confidence in this endo but the thing is, she only just finished her residency and sometimes I wonder if she really knows entirely what she’s doing. Unfortunately, like everywhere else we’re short on endos here and a switch would not be easy.

I definitely don’t have insomnia or tremors or anything truly awful–just the uncomfortable feeling of being slightly off, which again kind of comes and goes. But you’re right, essentially I know what’s going on with my body (which is feeling hyper while I type this….).

lhc11

[cynthia]

#1064454

I just had surgery and am interested in the few monthes after your surgery I also feel sooo much better right after am also very aware of not wanting to go hyper on synthroid am on 88 mcg.. after surgery and will not know my statis for 6 weeks it takes that long for any changes to be seen in labs….6 weeks can feel like a life time….I will deal with my symptoms not necessarily the labs dr.’s will listen if you are strong about it now days we are the customers and dr.s are much more open to our wishes…..good luck with pregnacy my daughter was hypo and had a hard time getting pregnany went thru all the meds and invitro ( spelling???) anyway she has a 3 year old little boy now and it was all worth it…

[Bobbi]

#1064455

Sometimes, early on with a dose change, we can feel a bit jazzed, but after a while things settle in and we feel fine again. So making sure that you are waiting long enough for the pituitary end of things to settle in can be really important — that’s the six to eight week minimum. The TSH is a type of "running average," (i.e. it does not instantaneously show what is the current reality). But, according to my endo, because the lab test for TSH is so finely tuned, the blood tests for TSH are more accurate than the tests for actual thyroid hormone. More accurate? I just mean that the test can detect smaller amounts of it than can be accuratedly detected for the actual thyroid hormones. There can be fluctuations with actual thyroid hormone levels, as well, and the TSH levels those fluctuations off by being that running average. So, while it is annoying to have to wait those weeks when we are feeling somewhat "off," we can rely on the results when we do wait. That is one of the reasons why so many endos want the TSH test, and eventually stop testing for the actual thyroid hormones themselves.

Even though your endo suggested a rather long wait for you to return, the key will be her response when you go back and ask for new blood tests, if you are still feeling hyper-ish. If she suggests that you wait the full three months for the new test, that is one thing. It reflects the time span that it can take for TSH to fully settle in to a dose change. If she wants you to come in, so that she can observe your symptoms a bit, before ordering the new test, that is pretty standard as well. Until an endo really gets to know you, they like to see things for themselves. But if she just ignores your symptoms, and gives you a brush off (unlikely), then you know you might be better off with a different doctor.

[lhc11]

#1064456

See, that’s the thing–I *haven’t* had a dosage change, unless we count my starting the Synthroid on June 10th the day after my surgery as one, which in a sense I guess it is, a change from my body providing some previously unmeasured level to the pill providing it. So I’ve been on 100 mcg for two months, never on any other (synthetic) dosage, with two blood tests–one after five weeks (these hyperish symptoms hadn’t started at that point, even though the TSH was still in the hyper range), the second after another four weeks (this past Monday). So it’s hard to gauge how long I should now wait on this same dosage before asking her to lower it (and *then* waiting for 6-8 weeks to see what happens) or asking for another blood test (another month?). My hope is that my body is *still* adjusting to this initial dose and that the symptoms will in fact decrease, but it hasn’t seemed like that is happening…yet. It’s really annoying to be feeling anxious/hyped up when I *don’t* feel anxious or hyped up, if you know what I mean! (Side note: I wonder how many endos have themselves experienced thyroid problems, and if they’re really able to understand what their patients are experiencing when it’s described to them. Then again, I guess one could ask that about any medical specialist. I always thought it it was cool that an orthopedic surgeon my mother once met had himself had his leg amputated….).

Anyway, thanks, everyone. I’ll stand firm with my endo when I get back in touch with her. The upside of her being a young doctor is I think she is afraid to make a mistake….

[ewmb]

#1064457

oops posted twice.

[ewmb]

#1064458

I had RAI but when I finally went hypo, which you didn’t do since you got replacement right away after surgery, I started on a much lower dose and went up gradually. Sounds like maybe you’re right and that your body just hasn’t gotten used to things yet. The one thing I asked at my last appointment to make it clear to myself was the fact that when we are stressed in some way or have to use more hormone in a single day or two the levels that we have left are not as consistent because we aren’t making any of our own hormone to go with the changes anymore so we may have some feeling of being off for a few days. Have you recently changed your activity level or had some really quiet days. Anything that would cause you to have used up more of your stores might make you feel "off" or more hyper since that’s really familiar to you. I think that’s what I feel sometimes especially when my body’s other hormones are acting up. Just my thoughts.

ewmb

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