[snelsen]

#1065556

sorry, i have NO IDEA why this loaded three times. I saved it as a draft, because I thought did not load at all!

[snelsen]

#1018536

What are the indications and meaning of each of these labs? I have been reducing…and reducing..and reducing..my Synthroid, and my TSH almost does not change, last three have been (2 month intervals between labs) .094, .036, .027 (most recent), (range is .4-5)
Free thyroxine-1.4, 1.1, 1.4 (range .6-1.2)
I have gone from 150 mcg to 100.
The prior 12 years, TSH was never even up to .1.

Of course I will talk with my endocrinologist, but interested in facilitators comments. As Sythroid has been reduced, I have been miserably cold, super tired and very constipated, yes I know these are hypo symptoms, but hypo I am not!

[Bobbi]

#1065557

Part of the problem that we have, is that "symptoms" of a problem for us can also commonly be caused by something else. For example: people DO get constipated who are not hypothyroid. People do get horridly fatigued, etc. etc. Those of us who have had doctors tinkering with our thyroids, however, tend to think that these symptoms are an indication of some aspect of thyroid imbalance, because of our experience with the process. My first thought when I get irrationally irritable is "Is my thyroid off?"

The fact that our symptoms can be caused by many different things is one of the reasons why our endos look at the numbers (for TSH etc.) rather than listen to our symptom list.

As to why you’ve had reductions in replacement hormone without your thyroid levels changing much? A guess. Most of us think that if we have RAI or surgery to remove our thyroids that there is absolutely no thyroid tissue left. This is usually not correct. Even with thyroidectomies, typically "some" thyroid tissue is left in place to protect parathyroids and the nerve that services the vocal cords. That is why thyroid cancer patients who have aggressive surgery to remove thyroid tissue, go through RAI after the surgery. There is likely to be ‘some" thyroid tissue left. Even with ablation being the goal of RAI, some thyroid tissue can be left alive, and kicking. If there is thyroid tissue present, those cells are making hormone and putting it into the body. Antibody levels can rise or fall. And when they do, there can be a need for a dose change of replacement hormone.

Another guess: As we age, our bodies change. We lose muscle and bone on an ongoing basis. Some of us lose lots of weight as a result. Many of us get heavier. Perhaps this can cause the need for a change to our replacement hormone. If there’s less/more body to "run" our thyroid needs might change.

[Ski]

#1065558

Are you saying you were hyperthyroid for more than 12 years?

It’s true that TSH can take a long time to catch up to T4 levels, since it is more of a running average snapshot than a moment-to-moment change in the body. If you’ve changed doses every two months, you may need to wait a bit longer before the TSH reads correctly. For now, your doctor may want to adjust doses based on T4 levels.

Still, if your TSH ran so low for so long, it’s also possible your pituitary gland is just having a hard time "waking up" again (since that’s where the TSH comes from). I have heard of that in patients who have been hyperthyroid for very long periods of time.

And just one WIDE reaching thought ~ it is also possible that the pituitary is malfunctioning. All options should be considered, when things seem to be so out of balance.

[snelsen]

#1065559

That is a really good point about "symptoms." In both hyper and hypo, there are certainly many variables which can be contributed to other than thyroid.
Ski, yes, I have been maintained in a hyperthyroid state for over 12 years!!!! By labs, but not by symptoms, I had no symptoms,
Pulse rate in the 50’s, weight stable, did not feel hyper, anxious, etc. About the only think I could say is that I was always warm, kept a cool house. Not that I have gone from 150 mcg down to (beginning today) 75 mcg, I am ALWAYS COLD!
I cannot explain why the endocrinologist at the University of washington was content to have the low TSH levels. I was taking 150 mcg, felt really good. She has since left. I have often wondered if being maintained with the low TSH ultimately contributed to the onset of TED in the past two years.
I know I had a sub total thyroidectomy. Was euthyroid for almost 35 years, then began Synthroid.
I have a different endo now, and I made an appt to see him Friday. Thanks so much for the T4/TSH comment, and the pituitary function aspect. I will mention both to him.
Shirley

[waitman192]

#1065560

Hi Shirley,
So for sure the doctors want to treat you the person and symptoms and not the labs. If your TSH is low, but you’re still feeling fine, then there’s no real point in correcting "just" a number. It seems like the synthroid you were on (150) was keeping you at a good state, and the fact that you’re symptoms are returning after you are reducing synthroid tells me that you need your synthroid and that you have no working thyroid gland left. Your TSH almost always lags behind your T4 (I say almost always because there are "almost" never certainties in medicine… get it?? hehe).

As you go down on your synthroid, if your TSH never rises, then there’s reason to go looking at your pituitary, as it should respond to a low level of thyroid hormone in your body. However, generally, you would start to see some other symptoms as well, as the thyroid area of the pituitary does not usually get selectively knocked out (so to speak).

My guess is multifactorial. There can be individual variations, the true statement about thyroid tissue being left over, most especially after a sub-total thyroidectomy, and possibly a slight to moderate resurgence of your Graves Disease. If your eye disease is worsening, it might be worth it to get another antibody level, as the eye disease is unrelated to thyroid hormones themselves, but rather the antibodies that have been created. And to throw in another variable, I do not know your age, however you mentioned you were euthyroid for 35 years, so I could jump to a conclusion that menopause is also playing a role in all that you are feeling as well, especially as thyroid hormone and estrogens/progesterones use similar proteins in the blood to "travel" (the thyroid binding protein and sex-hormone binding proteins are similar enough in structure that they can bind to either especially when either one of them is high enough in the blood.)

I know that was a lot of medicalese… so to simplify it we use a train analogy. You have 2 trains each carrying a different hormone (thyroid and estrogen), and these two trains have found a happy balance in your body. All of the sudden, you have started menopause, which causes a huge increase in estrogen. The estrogen has gotten greedy, and taken over part of the thyroid train, and all of the sudden everything has run amuck in your body. Take that into account with the whole decreasing your synthroid (the synthetic version of thyroid hormone), a possible slight resurgence of Graves (as you have noticed with increased eye disease), and there’s just a lot going on. I could be way off base here, and you went through menopause 20 years ago, and the symptoms are just related to the decreasing of synthroid, but there’s obviously a lot of variation as to what may actually be happening, which is why it’s good you’re going to your doctor on Friday! Ha!

[Author]

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