[Anonymous]

#1020066

I have another question for anyone.

yes I have Graves disease and I do well with it. (meaning not having to be on PTU long and then going off of it and being ok on my own without any meds) BUT why do my levels fluctuate and I never ever go over 1.8

I feel good over 1.0 but as soon as I am under 1.0 I am feeling it. Everyone says it’s in my head. I say NO. I don’t wait get a test then say yes I feel weird. The purpose of me getting the test done is because I feel weird already and know that I am coming out of range.

Is this weird? Is there any place that does studies about the Ranges that I can talk to.

I am told that TSH ranges differ for every lab, mine say the range is 0.350-5.50 BUT at 0.9 I feel off and start to feel confused. I hated being told it was in my head and I don’t like to hear now.

How do these ranges get fixed ?

[Anonymous]

#1075905

The ranges are determined by a number of factors — and I’m not sure that I know all of them. But one of the factors is the actual manner of doing the test: what materials are used to analyse the TSH, how is it done, etc. Some labs will use one set of techniques while another lab could use another. That is why you are told to look at the range of normal for the lab that did your test.

As to what determines the range for normal? I believe it is determined statistically, given the results of a large — let’s say huge — number of patients. Patients with symptoms and patients without symptoms. One of the reasons given for the AACE’s changing of the guidelines was that they decided that there are MORE cases of subclinical hypothyroidism than previously thought. If that is the case, then the statistical range of normal that had been determined before would be skewed to include a number of people who were subclinically hypothyroid. So the recommendation went out to narrow their range for normal. The doctors can do this, btw, without the labs having to change anything. The doctors simply reevaluate based on the results given.

That at least is my understanding of things.

As to whether or not you can tell what your levels are, I think we all experience what you are talking about. We become hyper-aware (not an intentional pun) of wee changes in how we feel, while we are dealing with bouts of hyperthyroidism. Usually, we get positive reinforcement of our sense of how things are, because we go in and lo and behold, yes our levels have changed in the direction we thought. But what I have discovered as I have made my journey back to health, with thyroid levels well controlled in the normal zone, is that I cannot really tell what my levels are by how I feel. Like you, I thought I could peg things by how I feel. But over time, I discovered that I could feel fine, hyper or hypo and have a blood test show EXACTLY the same TSH level. Only once in the past five years have I felt hyper, and gone in and had a blood test result show that I was really in the toxic end of things. I mention this to help you to understand why your doctors do not necessarily “believe” you. It is likely that they have seen lots and lots of us over their careers, and they know we are sometimes, but not always, right. What matters is not that they believe you: what matters is that they put things to the test, and have your blood levels analysed. And, also, that they are willing perhaps to tweak medication doses to see if that helps our sense of well-being. There is a wide range of normal, and perhaps not everyone feels well at every point in that range. It is very important, however, that we not be hyperthyroid, even a little bit. Doctors have determined that even slightly elevated thyroid hormone levels are very, very bad for the body, long term. So they are inclined to make sure that we are solidly in the center of the normal range, no matter how we feel.

Bobbi — NGDF Online Facilitator

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