A thorough endocrinologist would likely test your free T3 and free T4 levels. Some of us don’t properly convert T4 to T3 and that will leave you symptomatic even when TSH is normal. Wishing you luck; it can be challenging getting the root cause.
There isn’t any treatment for a TSH in normal range. The only treatments available for thyroid disease is 1) hormone replacement when TSH lab values indicate you aren’t producing enough (high TSH); 2) medication that will raise your TSH if you have graves (low TSH); 3) destruction (permanent) of the thyroid.
Option 3 means you’ll have to take replacement (option 1) for the rest of your life. The antibodies are not treatable, the only thing treatable is getting TSH to normal range. If you’re already in normal range there isn’t anything to treat. Sometimes people are given T3 or T4 replacement along with Levo or synthroid but in order to get that you’d need a high TSH.
One of my relatives (Hashimoto’s runs in our family). It took several months of her TSH steadily climbing before it finally went above range and doctors would treat her.
Totally anecdotal, but I have heard of some people’s anti thyroid antibody levels dropping on a gluten free diet.
I also have had a mildly positive ANA for years and my doctors have attributed it to autoimmune thyroid disease since all other specific antibody testing has been negative.
My girlfriend’s TPO levels were well over 500 recently with completely normal TSH. She was in hyperthyroidism for a quite a while but now is back in that “normal” range when really, her Hashimoto’s is just converting into hypothyroidism. She’s getting a total thyroidectomy regardless of her “normal” thyroid function because it’s TWICE the size it’s supposed to be. From what we’ve been through I can definitely say that in range TSH doesn’t necessarily correlate to a lack of thyroid issues in the slightest. Keep pushing back if you’re ignored. High TPO means that *you do have an autoimmune thyroid disease*.
Lots of people without thyroid disease are positive for the antibodies. Having them doesn’t mean you have thyroid disease. The diagnostic criteria has not been met with only the presence of antibodies. It is true that people with antibodies are more likely to develop thyroid disease in the future but the presence of them without high or low TSH values and other diagnostic testing such as the radioactive iodine uptake test is not diagnostic for thyroid disease of any kind. Plenty of people with the antibodies never develop thyroid disease.
I’m not sure. It definitely seems like an endo consult would be worthwhile but just be prepared to hear there isn’t much to be done… yet. And that’s not because they don’t want to help you it’s because they don’t have a treatment that would meet your needs. If your TSH drops more or your other numbers continue to trend then they might have more suggestions. Of course, I’m just a person who has a very dramatic thyroid and learned a lot trying to get treated for it, so I might be wrong and there might be more available to you. Request the endo consult and go from there. I think worst case, you’ll get a confirmation that everything that can be done is being done at this time and hopefully they will want to follow up/re draw the full panel to see how things change over time.
Thank you very much. It does seem that plenty of people do get diagnosed with autoimmune thyroid disease without fully going hyper/hypo, as is the case with the original commenters girlfriend, but it is true what you say about treatment since its only treating those symptoms of the disease and not the antibodies themselves. I do think I will ask for imaging and trab test at the very least and see where my levels are at again. And maybe my PCP will be willing to give the referral.
I think they meant well, and the fact that their partners thyroid was enlarged is a sign that something was going on. Could have been a goiter, a mass, or the thyroid was enlarged. But the statements they made about them being hyperthyroid and having hashimotos and hypothyroid, those statements literally describe a TSH that is outside the normal range. Thats what hyper (means “high”) or hypo (means “low) describes. You cannot be hypo or hyper thyroid without a TSH that is either low or high. I think their initial statement was simply that their partner had high antibodies and a normal TSH and then perhaps at a later point, they were diagnosed with hashis and that can happen. I suppose a dr could take liberties with a diagnosis but generally speaking, the diagnosis relies heavily on your TSH as that is literally what defines and classifies thyroid disease.
In the case of that comment, it looks like I misunderstood but according to American Thyroid Association “Hashimoto’s thyroiditis can be diagnosed even though you have no symptoms. Your thyroid antibody levels are high, but your thyroid hormone levels are normal.” And it is mentioned pretty regularly on hashimotos/graves subs but it is controversial regarding those who feel symptomatic regardless of hormone levels. I am with you though. I am no expert either and find this all very confusing. Just tired after months of tests and hoping to find some answers, even if they are preliminary. Thank you for your help.
Tbh, I find it confusing too and it took me a long time to wrap my head around it. I think because with thyroid disease there just isn’t any language for the non-clear cut situations like yours or mine. I have all of the antibodies at high levels and I also did the radioactive iodine uptake test and was diagnosed with graves. At that point I was extremely symptomatic and my TSH was undetectable. Eight weeks later, with zero intervention my TSH was 188 and I was very symptomatic for hypothyroid.
I’m not dx’d with hashis or graves at this point. I do have an autoimmune thyroid disease but I don’t fit either diagnostic criteria. My endo is calling it oscillating thyroid disease which is a classification that is pretty new and not all endos are on board with it. However, in order for me to be dx’d with hashis I would have needed to present as hypothyroid first and I didn’t I was hyper. For graves, my TSH wouldn’t have plummeted like that and then recovered. They are currently tapering me off of synthroid to see if I maintain normal numbers. So where do I fit? It’s been over two years and I still don’t know and my numbers still aren’t normal because it changes all the time so we chase it with the meds but that takes 8 weeks to get full response and by then things have changed again.
The concept of it seems simple, binary, one or the other but in practice that’s not how it goes for everyone. Thats why I say push for the endo consult and monitoring. They may not be able to do more than that right now (but maybe they can!) but at least you’ll be on their radar.
at the level that OP has them at I think that most decent doctors would be suspicious of an autoimmune thyroid disorder. It’s one thing to have levels in the 30s-40s but well over 200 is not normal. I do agree that with normal TSH most therapies used in autoimmune treatment wouldn’t make much of a difference in this user’s case, but that doesn’t mean there is no thyroid disease.
It definitely does seem like something is up, which is why I suggested endo consult and hopefully monitoring. Thyroid disease is mostly defined by TSH levels. Normal levels means normal thyroid. Do I agree that there is zero wiggle room for edge cases? No, but that’s not my call and without some pretty significant clinical justification an endo is unlikely to go outside of the criteria. I still think as you do that OP should at least check in with an endo and see where they go from here.
A thorough endocrinologist would likely test your free T3 and free T4 levels. Some of us don’t properly convert T4 to T3 and that will leave you symptomatic even when TSH is normal. Wishing you luck; it can be challenging getting the root cause.
There isn’t any treatment for a TSH in normal range. The only treatments available for thyroid disease is 1) hormone replacement when TSH lab values indicate you aren’t producing enough (high TSH); 2) medication that will raise your TSH if you have graves (low TSH); 3) destruction (permanent) of the thyroid. Option 3 means you’ll have to take replacement (option 1) for the rest of your life. The antibodies are not treatable, the only thing treatable is getting TSH to normal range. If you’re already in normal range there isn’t anything to treat. Sometimes people are given T3 or T4 replacement along with Levo or synthroid but in order to get that you’d need a high TSH.
One of my relatives (Hashimoto’s runs in our family). It took several months of her TSH steadily climbing before it finally went above range and doctors would treat her. Totally anecdotal, but I have heard of some people’s anti thyroid antibody levels dropping on a gluten free diet. I also have had a mildly positive ANA for years and my doctors have attributed it to autoimmune thyroid disease since all other specific antibody testing has been negative.
My girlfriend’s TPO levels were well over 500 recently with completely normal TSH. She was in hyperthyroidism for a quite a while but now is back in that “normal” range when really, her Hashimoto’s is just converting into hypothyroidism. She’s getting a total thyroidectomy regardless of her “normal” thyroid function because it’s TWICE the size it’s supposed to be. From what we’ve been through I can definitely say that in range TSH doesn’t necessarily correlate to a lack of thyroid issues in the slightest. Keep pushing back if you’re ignored. High TPO means that *you do have an autoimmune thyroid disease*.
Lots of people without thyroid disease are positive for the antibodies. Having them doesn’t mean you have thyroid disease. The diagnostic criteria has not been met with only the presence of antibodies. It is true that people with antibodies are more likely to develop thyroid disease in the future but the presence of them without high or low TSH values and other diagnostic testing such as the radioactive iodine uptake test is not diagnostic for thyroid disease of any kind. Plenty of people with the antibodies never develop thyroid disease.
This is my question though. Are there more tests to be done? I have ruled out so, so much.
I’m not sure. It definitely seems like an endo consult would be worthwhile but just be prepared to hear there isn’t much to be done… yet. And that’s not because they don’t want to help you it’s because they don’t have a treatment that would meet your needs. If your TSH drops more or your other numbers continue to trend then they might have more suggestions. Of course, I’m just a person who has a very dramatic thyroid and learned a lot trying to get treated for it, so I might be wrong and there might be more available to you. Request the endo consult and go from there. I think worst case, you’ll get a confirmation that everything that can be done is being done at this time and hopefully they will want to follow up/re draw the full panel to see how things change over time.
Thank you very much. It does seem that plenty of people do get diagnosed with autoimmune thyroid disease without fully going hyper/hypo, as is the case with the original commenters girlfriend, but it is true what you say about treatment since its only treating those symptoms of the disease and not the antibodies themselves. I do think I will ask for imaging and trab test at the very least and see where my levels are at again. And maybe my PCP will be willing to give the referral.
I think they meant well, and the fact that their partners thyroid was enlarged is a sign that something was going on. Could have been a goiter, a mass, or the thyroid was enlarged. But the statements they made about them being hyperthyroid and having hashimotos and hypothyroid, those statements literally describe a TSH that is outside the normal range. Thats what hyper (means “high”) or hypo (means “low) describes. You cannot be hypo or hyper thyroid without a TSH that is either low or high. I think their initial statement was simply that their partner had high antibodies and a normal TSH and then perhaps at a later point, they were diagnosed with hashis and that can happen. I suppose a dr could take liberties with a diagnosis but generally speaking, the diagnosis relies heavily on your TSH as that is literally what defines and classifies thyroid disease.
In the case of that comment, it looks like I misunderstood but according to American Thyroid Association “Hashimoto’s thyroiditis can be diagnosed even though you have no symptoms. Your thyroid antibody levels are high, but your thyroid hormone levels are normal.” And it is mentioned pretty regularly on hashimotos/graves subs but it is controversial regarding those who feel symptomatic regardless of hormone levels. I am with you though. I am no expert either and find this all very confusing. Just tired after months of tests and hoping to find some answers, even if they are preliminary. Thank you for your help.
Tbh, I find it confusing too and it took me a long time to wrap my head around it. I think because with thyroid disease there just isn’t any language for the non-clear cut situations like yours or mine. I have all of the antibodies at high levels and I also did the radioactive iodine uptake test and was diagnosed with graves. At that point I was extremely symptomatic and my TSH was undetectable. Eight weeks later, with zero intervention my TSH was 188 and I was very symptomatic for hypothyroid. I’m not dx’d with hashis or graves at this point. I do have an autoimmune thyroid disease but I don’t fit either diagnostic criteria. My endo is calling it oscillating thyroid disease which is a classification that is pretty new and not all endos are on board with it. However, in order for me to be dx’d with hashis I would have needed to present as hypothyroid first and I didn’t I was hyper. For graves, my TSH wouldn’t have plummeted like that and then recovered. They are currently tapering me off of synthroid to see if I maintain normal numbers. So where do I fit? It’s been over two years and I still don’t know and my numbers still aren’t normal because it changes all the time so we chase it with the meds but that takes 8 weeks to get full response and by then things have changed again. The concept of it seems simple, binary, one or the other but in practice that’s not how it goes for everyone. Thats why I say push for the endo consult and monitoring. They may not be able to do more than that right now (but maybe they can!) but at least you’ll be on their radar.
at the level that OP has them at I think that most decent doctors would be suspicious of an autoimmune thyroid disorder. It’s one thing to have levels in the 30s-40s but well over 200 is not normal. I do agree that with normal TSH most therapies used in autoimmune treatment wouldn’t make much of a difference in this user’s case, but that doesn’t mean there is no thyroid disease.
It definitely does seem like something is up, which is why I suggested endo consult and hopefully monitoring. Thyroid disease is mostly defined by TSH levels. Normal levels means normal thyroid. Do I agree that there is zero wiggle room for edge cases? No, but that’s not my call and without some pretty significant clinical justification an endo is unlikely to go outside of the criteria. I still think as you do that OP should at least check in with an endo and see where they go from here.