[magli]

#1018176

I had my thyroid surgically removed in April 2006 after having been diagnosed with Graves disease for 5 years. I am a male, 47 years old. Since the surgery, my Dr has tried to stabilize me changing the dasage of the medication and even the mdication. I am now on Euthyrox 150 mg 6 days and on 125 mg one day weekly. the latest test showed TSH at 0.27 which I understand is at the lowest. The Dr. changed gain the dosage to 150 mg 5 days and 125 mg 2 days. I think he knows what he is doing. My question is what are the side effects of living with low TSH for longer periods of time? I am aware that the Graves disease will not go away. But is is possible that I will never be stabilized and I will go on as now i.e. having blood tests every 2-3 months and enduring all those nasty things associated with Graves (perspiration and feeling hot in December, bad and short tempered, loss of concentration, feeling tired all the time, execessive heart beat, etc;). I have reached the stage of believing that it was wrong to undergo the surgery (it lasted more than 3 hours; apparentlly the gland had become of monstrous dimensions and had started expanding and going down inside the neck).

I suppose my questions are commonplace but the answers I get from my Dr are sheer jargon and there is nothing worse than not knowing what is going on inside your body. Thank you ever so much.

[Bobbi]

#1063108

TSH stands for Thyroid Stimulating Antibody, and it comes from the pituitary gland. The pituitary acts as a kind of internal "thermostat" for thyroid activity. If it (the pituitary) senses too much thyroid hormone, it LOWERS the amount of TSH that it puts out. If it sense too little thyroid hormone, it raises the amount of TSH it puts out. As I understand things, the only function for TSH is to regulate thyroid activity. When we don’t have a thyroid, our doctors use TSH to monitor the amount of replacement hormone that we take.

If a TSH is lower than it should be (according to ranges of normal set up by labs), it means that you are hyperthyroid — i.e. have too much thyroid hormone. If it is higher than the normal range, you are hyPOthyroid. So the problem arises not from the amount of TSH, but rather from the amount of thyroid hormone.

As to whether or not you are hyperthyroid with your current TSH, you would need to look at your own blood test report. Different labs have different ranges of normal, depending upon how they analyzed the blood (what chemicals they used, etc.) But on the lab report there will be an indication of range of normal, and whether your results fell inside our outside of normal, and if outside, where.

Based on what you told us, it looks like your doctor is trying to fine tune your replacement, not make any major move. (The divided dose, taking a smaller dose on some days than others, is a major indicator. My endo is doing the same with me right now.) So, while your TSH may be on the low side of things, it appears that your doctor thinks it is close to where it should be.

The problem arises when we have symptoms at a dose that our doctors think is appropriate. Your indication of symptoms suggests that even though your TSH might "technically" be close to OK, or even OK based on the lab being used, YOU may not be where you should be. There is a fairly decent range of normal for TSH. On my lab it goes from something like 0.3 (or so) to 4.0 (or thereabouts). That is a LOT of wiggle room. Occasionally my endo gives me a dose that puts me near the hyper end of things (the low end), and I cannot sleep, concentrate, and have hyper symptoms. So, I ask her to lower the dose . My problem with allowing things to remain at the "too low" end for me, is that being hyperthyroid causes us to lose bone, in addition to the simply pesky symptoms of concentration, etc. I don’t want to develop osteoporosis, which is a distinct possibility if I go too long at too high a level of thyroid hormone. I also don’t like the way I feel. But THAT argument usually doesn’t work with a doctor. ; )

I suppose the first thing you need to do is actually look at your blood test results to see what the range of normal is for your lab. Then, if it is indeed showing way low levels, even though normal, of thyroid hormone, ask the doctor to experiment with putting you at a slightly lower level of replacement, to see how that works for you. Some doctors will give a little (like mine) and some won’t. But it cannot hurt to ask. Don’t expect, however, for a dose change to instantly make everything right again. If you have had too much thyroid hormone for too long, it can take a few months for the body to heal enough so that you feel the difference.

[snelsen]

#1063109

First, I have a comment about your possible regrets about your surgery, which you are wondering if that is the cause of your present concerns. I know it is easy to look for a reason when we have to mess around with thyroid doses to get to the right spot. But, in your case, you probably did exactly the right thing with the surgery, where the other two choice might not have been a good choice for you at all. That is because when you have SUCH an enlarged gland, it is sometime necessary to resect it surgically, for it is pretty crowded in the neck, and our bodies have us arranged for organs to be a certain size, and when they get much larger, they compress other structures, veins and arteries, and that is a big problem.

But, I realize that was a passing comment, and not why you are writing. Bobbi gave a very good response for you, with lots of good information that you may have to read many time so you begin to understand how all this works, and so you own this knowledge. A once over lightly read is probably not enough, and it may seem like jargon, until you see how it all works. I agree with her that you doctor sounds very knowledgeable, and he is trying hard to get you to the right place, making very small adjustments in your meds. I KNOW how frustrating this is, especially when you do not feel well. He is doing the right thing by having your labs every 2-3 months.
My experience is a bit similar to yours. I have had a suppressed TSH for a long time, we have that in common. But I felt fine. For the reasons Bobbi mentioned, osteoporosis and also potential cardiac issues, my endo wanted to lower Synthroid. We did that, but my TSH never did budge. I felt worse, though. Now we are increasing it, I feel a bit better.
YOu have the opposite problem, with too much thyroid, so he is carefully trying to lower the dose. Plus, you have symptoms of feeling hyper. So he is doing the right thing, and I think you have good reason to BELIEVE you will get back to feeling like your old self, before Graves’, when the dose is right. That will be determined by your labs and how you feel. I wish you the BEST. Maybe the posts you get will help you feel that there is less jargon from the doc, but it is a subject we simply need to learn and understand, and it is NOT simple!
Shirley

[magli]

#1063110

Thank you very much for our replies. The reason why I said that I regret having had the surgery is that now I rely on medicaments and previously I also relied on medicaments. Fair enough, now I am taking one pill daily and previously there were times where I was taking up to 9 pills daily. And the other problems that may to do with Graves (feeling hot all the time and perspirating, having anxiety all the time, being abrupt with people for no major reason, skirmishes in the heart, ect. ect.) are all persisting. Only lately did I realize that having the thyroid gland removed would not solve these aspects of Graves. Unfortunately, I had not realized it when I decided to undergo surgery. And after the surgery I developed problems with my eyes (very high pressure) and I suppose this made me feel bad and sad and if this had not happened perhaps my psychologically I might have been better.

I know that my Dr. knows what he is doing (he is one of the top in his profession). It is probably the prospect that I might spend the rest of my life trying to work out which is the correct dosage, to no avail.

Thanks again for your replies. Much appreciated.

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