How does hypothyroidism feel?
December 4, 2014 5:30 AM Subscribe
I saw the doctor the other day because I've been easily fatigued lately. They ran tests and found that my TSH is 16.9.
I have been on the same dosage of synthroid for several years since having my thyroid removed (cancer). I've forgotten a few doses lately, but I don't think it was that many. The other change is that I recently moved and my last prescription was filled at a different pharmacy.
Of course we're upping my synthroid. My questions:
1) Shouldn't I feel a lot worse at 16.9? I am a bit draggy and sensitive to cold but, y'know, functional. Haven't gained weight. I would think I should have gone up at least a size and my hair would be falling out and my skin would be flakey.
2) What would cause such a dramatic shift in my TSH? I'm normally around 0.5 - 2.0.
3) Should I be screened for a recurrence of thyroid cancer?
I left a message with my doc about this and asked for another appointment and about a referral to an endocrinologist for cancer screening. Waiting to hear back. It's kind of hard to stop thinking about it in the meantime.
I have been on the same dosage of synthroid for several years since having my thyroid removed (cancer). I've forgotten a few doses lately, but I don't think it was that many. The other change is that I recently moved and my last prescription was filled at a different pharmacy.
Of course we're upping my synthroid. My questions:
1) Shouldn't I feel a lot worse at 16.9? I am a bit draggy and sensitive to cold but, y'know, functional. Haven't gained weight. I would think I should have gone up at least a size and my hair would be falling out and my skin would be flakey.
2) What would cause such a dramatic shift in my TSH? I'm normally around 0.5 - 2.0.
3) Should I be screened for a recurrence of thyroid cancer?
I left a message with my doc about this and asked for another appointment and about a referral to an endocrinologist for cancer screening. Waiting to hear back. It's kind of hard to stop thinking about it in the meantime.
Best answer: IANAD. But if anecdata helps, my endo has said that different people respond differently to the levels of thyroxin in their bodies. Some people get hypo symptoms at levels that are "normal"; some people get hyper symptoms at levels that are "normal"; and I'm sure some people have only mild symptoms at levels where most people would be much sicker. You may be in the last category.
Also, it is possible for your TSH to be super-wacky but your actual T3/T4 levels to be only somewhat out of whack.
And also also, the levels of thyroxin you need to take change over time for various reasons. So you may just need a higher dose now, not for any particular reason, but just because that happens to people.
TL;DR: I would definitely go see your endo, but I wouldn't panic just yet. Hang in there!
posted by pie ninja at 6:47 AM on December 4, 2014 [1 favorite]
Also, it is possible for your TSH to be super-wacky but your actual T3/T4 levels to be only somewhat out of whack.
And also also, the levels of thyroxin you need to take change over time for various reasons. So you may just need a higher dose now, not for any particular reason, but just because that happens to people.
TL;DR: I would definitely go see your endo, but I wouldn't panic just yet. Hang in there!
posted by pie ninja at 6:47 AM on December 4, 2014 [1 favorite]
To add to what's already been said, some people don't get the boost from Synthroid that they do from Westhroid or Armour thyroid, which are naturally derived. I'm one of them, and I have at least three friends that have had to switch from Synthroid to one of the natural thyroids. Changing can make all the difference, so ask your endo to try you on one of the other ones. Good luck!
posted by summerstorm at 7:03 AM on December 4, 2014
posted by summerstorm at 7:03 AM on December 4, 2014
Best answer: I was at a similar number when I was diagnosed a few years ago. Except for a bit of dry skin, I was more or less asymptomatic. The doctor was listing off symptoms and I was just like "No, no, didn't have that one, no, no, didn't have that one either..." If we hadn't done routine blood work, it probably would have been a while before I noticed anything was amiss.
My dad's was a bit higher than mine by the time he was diagnosed and he was pretty much headed for zombie territory. Everyone is different. Go see your endo. Good luck!
posted by futureisunwritten at 7:56 AM on December 4, 2014 [1 favorite]
My dad's was a bit higher than mine by the time he was diagnosed and he was pretty much headed for zombie territory. Everyone is different. Go see your endo. Good luck!
posted by futureisunwritten at 7:56 AM on December 4, 2014 [1 favorite]
Best answer: TSH is not the test you or your doctor should be focusing on. TSH is thyroid stimulating hormone. If you had your thyroid removed, there is nothing to stimulate (or a little, assuming a part remains). You are on hormonal replacement therapy. That hormone will act in place of thyroid function. Furthermore, taking Synthroid will lower your TSH, the feedback will say you don't need to stimulate your thyroid.
This is incorrect. TSH is indeed the hormone produced to stimulate your thyroid gland in response to a lack of circulating free T4 (normally produced by the thyroid or in your case administered in the form of Synthroid) and free T3 (most of which is made by your body (not the thyroid) converting T4 to T3.
If your TSH is raised it means your body is not seeing enough free T4 and free T3. There is a huge range of effect people feel from this, some people feel absolutely dreadful with only a slightly raised TSH, other people feel not great but OK with a TSH of 100. It’s very variable and I don’t think anyone knows why.
The hypothyroidism is pointing in the other direction, saying you don't have cancer (which would have an overproduction).
This is also partly incorrect. High TSH does NOT suggest your cancer has come back. However thyroid cancer does not overproduce T4 & T3 so TSH is NOT low in patients with thyroid cancer. Raised TSH can sometimes stimulate some types of thyroid cancer and many patients with a history of thyroid cancer are deliberately treated a little bit too much to keep the TSH undetectable (rather than keeping it normal in a patient on thyroxine for other reasons). It could be worth discussing with your endocrinologist whether they are aiming for this in your case.
posted by *becca* at 9:30 AM on December 4, 2014 [1 favorite]
This is incorrect. TSH is indeed the hormone produced to stimulate your thyroid gland in response to a lack of circulating free T4 (normally produced by the thyroid or in your case administered in the form of Synthroid) and free T3 (most of which is made by your body (not the thyroid) converting T4 to T3.
If your TSH is raised it means your body is not seeing enough free T4 and free T3. There is a huge range of effect people feel from this, some people feel absolutely dreadful with only a slightly raised TSH, other people feel not great but OK with a TSH of 100. It’s very variable and I don’t think anyone knows why.
The hypothyroidism is pointing in the other direction, saying you don't have cancer (which would have an overproduction).
This is also partly incorrect. High TSH does NOT suggest your cancer has come back. However thyroid cancer does not overproduce T4 & T3 so TSH is NOT low in patients with thyroid cancer. Raised TSH can sometimes stimulate some types of thyroid cancer and many patients with a history of thyroid cancer are deliberately treated a little bit too much to keep the TSH undetectable (rather than keeping it normal in a patient on thyroxine for other reasons). It could be worth discussing with your endocrinologist whether they are aiming for this in your case.
posted by *becca* at 9:30 AM on December 4, 2014 [1 favorite]
Best answer: I agree with the above that everyone reacts differently. I had to have radioactive iodine treatment for my thyroid a few years ago. Afterwards, my thyroid stopped putting out any hormone at all, which the endocrinologist thought might happen. I was feeling a little draggy after a few months and went in to have my levels checked and probably get a prescription for Synthroid. My TSH was over 50! The doctor was a little surprised but agreed that everyone reacts differently.
posted by fanta_orange at 9:58 AM on December 4, 2014
posted by fanta_orange at 9:58 AM on December 4, 2014
The unfortunate part about missing a few doses of your thyroid is that it leaves the body much faster than it builds up. I'm not sure if that would completely account for such a high TSH, but it would definitely factor in. Still, It might be a good idea to go ahead and see an endocrinologist, so that you can be sure your health is OK.
posted by annsunny at 12:41 PM on December 4, 2014
posted by annsunny at 12:41 PM on December 4, 2014
*becca: I'm not sure what is incorrect about what I said.
This is incorrect. TSH is indeed the hormone produced to stimulate your thyroid gland in response to a lack of circulating free T4 (normally produced by the thyroid or in your case administered in the form of Synthroid) and free T3 (most of which is made by your body (not the thyroid) converting T4 to T3.
If your TSH is raised it means your body is not seeing enough free T4 and free T3. There is a huge range of effect people feel from this, some people feel absolutely dreadful with only a slightly raised TSH, other people feel not great but OK with a TSH of 100. It’s very variable and I don’t think anyone knows why.
You restated pretty much what I said. As you (and I) said, the lack of Synthroid (T4) is raising her TSH. She is already lacking natural T4 because of her thyroidectomy. TSH (via TRH) is also released for several other reasons.
Are you suggesting TSH is doing something directly to affect bunderful's condition?
posted by dances_with_sneetches at 12:53 PM on December 4, 2014
This is incorrect. TSH is indeed the hormone produced to stimulate your thyroid gland in response to a lack of circulating free T4 (normally produced by the thyroid or in your case administered in the form of Synthroid) and free T3 (most of which is made by your body (not the thyroid) converting T4 to T3.
If your TSH is raised it means your body is not seeing enough free T4 and free T3. There is a huge range of effect people feel from this, some people feel absolutely dreadful with only a slightly raised TSH, other people feel not great but OK with a TSH of 100. It’s very variable and I don’t think anyone knows why.
You restated pretty much what I said. As you (and I) said, the lack of Synthroid (T4) is raising her TSH. She is already lacking natural T4 because of her thyroidectomy. TSH (via TRH) is also released for several other reasons.
Are you suggesting TSH is doing something directly to affect bunderful's condition?
posted by dances_with_sneetches at 12:53 PM on December 4, 2014
No. I'm saying that because TSH is the feedback hormone that reflects the overall "thyroid state" whether from a thyroid gland or Synthroid then it IS the test the OP and her doctors should be focussing on. I TSH is not affecting her hypothyroidism but it is the best guide to how hypothyroid she is. I don't disagree with the rest of what you wrote - I'm sorry I wasn't more specific in my explanation.
The TSH is not affecting her thyroid gland as she doesn't have one but it could potentially stimulate a return of the thyroid cancer.
In the second part I quoted I disagreed with your statement that if her cancer had returned she would be overproducing - thyroid cancer does not result in overproduction of thyroid hormones.
posted by *becca* at 1:12 PM on December 4, 2014
The TSH is not affecting her thyroid gland as she doesn't have one but it could potentially stimulate a return of the thyroid cancer.
In the second part I quoted I disagreed with your statement that if her cancer had returned she would be overproducing - thyroid cancer does not result in overproduction of thyroid hormones.
posted by *becca* at 1:12 PM on December 4, 2014
The TSH is not affecting her thyroid gland as she doesn't have one but it could potentially stimulate a return of the thyroid cancer
Bunderful, on reflection this wasn't very sensitive - it's highly unlikely to have had much effect in a short period. Absolutely a good idea to get a referral to an endocrinologist to make sure everything is on track but the short term rise in TSH is absolutely NOT a reason to worry.
posted by *becca* at 1:34 PM on December 4, 2014
Bunderful, on reflection this wasn't very sensitive - it's highly unlikely to have had much effect in a short period. Absolutely a good idea to get a referral to an endocrinologist to make sure everything is on track but the short term rise in TSH is absolutely NOT a reason to worry.
posted by *becca* at 1:34 PM on December 4, 2014
Response by poster: As a follow-up: I left a message with the doc with several questions including whether I need to be screened for cancer. She left me a voicemail saying "Well, you have no thyroid. So the cancer can't come back." I'll be looking for a new doc.
posted by bunderful at 5:32 PM on December 6, 2014
posted by bunderful at 5:32 PM on December 6, 2014
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The lack of feedback is probably why you have higher TSH. However, the TSH is doing nothing.
As you expressed, the dragginess and sensitivity to cold are classic syndromes of thyroid hormone insufficiency. Which is what you have since you have missed some pills. If it isn't too severe, then it is only an annoyance which will probably go away when you do take your pills.
I can't comment on whether it is time to be screened for recurrence of thyroid cancer. The hypothyroidism is pointing in the other direction, saying you don't have cancer (which would have an overproduction).
posted by dances_with_sneetches at 5:45 AM on December 4, 2014 [4 favorites]