Aa
routine bloodwork
hi, I have mild hypothyroidism and just went on Levothyroxine .25 about 5 wks. ago. I went to get my routine tests for the med today... and noticed my endo doc didnt add the tests for T3 nor T4, free T4, etc. She only added TSH, Thryoxine AB(?) and one other test that I cant remember now (of course! brain fart!). Anyway, the other two tests besides TSH are for diagnosing the cause of hypo (I looked them up) and I thought she had figured that out. Weird... I was pretty sure the usual testing was to include those T3 and T4 tests w/ TSH. Oh well, I do have a complex case with many diseases, so maybe she isnt sure yet. I will ask of course next week. Just curious if anyone had that happen too? I sometimes wonder how good she is as she is kinda out there sometimes. I see so many docs and specialists its like a job, so I konw I want the best I can find. Anyway, I hope she is good, since my insurance doesnt cover many others... and they are all booked to the point of no new patients. Its hard to get into an endo. doc at all here. Cheers everyone and hope you are feeling well!
I dont agree with you and I dont want to talk to you. This IS an open forum and we dont have to chat with each other.
So, I am asking that you agree to disgagree and leave it alone. I would like to talk to others here so just ignore py posts. There are plenty of others you can reply to.
Please dont post to me anymore and I wont post to you, its that easy. Thank you.
So, I am asking that you agree to disgagree and leave it alone. I would like to talk to others here so just ignore py posts. There are plenty of others you can reply to.
Please dont post to me anymore and I wont post to you, its that easy. Thank you.
WHOA! I re-read my post to you. I can't understand how you came to the conclusion that it was "negative"..both,Gimel and,Goolarra are right! It appears that your last post was meant to insult those of us who gave you our opinions...YOU are the culprit as far as being insulting goes. The posts made to your first post, were very informative, helpful, and caring. You could have simply been ignored. We tried to help, and in the last post, you basically tell all but Jules, to mind our own business....I think my first response stands...if you have complete faith in the Dr. why come to a public health board for input? Personally, I don't take kindly to being insulted by someone I have tried to help.
The sidebar of the main page states the following quite clearly:
Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
However, many new members either assume that some of us have medical training or think that they are posting on the professional forum. Most of us who have been at MH for a while are very sensitive to this and tend to very quickly and directly disabuse people of this idea. We don't want any misconceptions and feel it's best to be redundant rather than misconstrued. I was in no way insulted by your comments...I simply wanted to make clear that I am not trained in any medical field.
This forum would be totally unnecessary if people were being appropriately treated by their doctors. What are we supposed to do? Say, yeah, yeah, your doctor is great, just do what he tells you, even when we know s/he is dead wrong. In my book, that's not support. Support is helping people get the medical help they need to feel well.
We don't claim to know all there is to know, but we certainly do know that when a doctor is treating based on TSH alone, s/he is wrong, plain and simple. So, yes, I CAN have an opinion about your doctor.
"...it would come off more positive to others to not place any opinion on others docs when you cant know..." So, please, explain to me how I can tell you your doctor isn't treating you properly, yet still "support" you by telling you I think she's great. I'm sorry if I'm not telling you what you want to hear.
Sorry to have horned in on your chat with Jules. This is an open forum, and if you'd like to control access and content, then it's best to PM. It's a good way to reinforce your beliefs without exposing yourself to other opinions that might be construed as "negative". However, I agree with gimel's last paragraph.. I hope you feel free to post again if you seek further opinions and wish you the best in finding good health.
Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
However, many new members either assume that some of us have medical training or think that they are posting on the professional forum. Most of us who have been at MH for a while are very sensitive to this and tend to very quickly and directly disabuse people of this idea. We don't want any misconceptions and feel it's best to be redundant rather than misconstrued. I was in no way insulted by your comments...I simply wanted to make clear that I am not trained in any medical field.
This forum would be totally unnecessary if people were being appropriately treated by their doctors. What are we supposed to do? Say, yeah, yeah, your doctor is great, just do what he tells you, even when we know s/he is dead wrong. In my book, that's not support. Support is helping people get the medical help they need to feel well.
We don't claim to know all there is to know, but we certainly do know that when a doctor is treating based on TSH alone, s/he is wrong, plain and simple. So, yes, I CAN have an opinion about your doctor.
"...it would come off more positive to others to not place any opinion on others docs when you cant know..." So, please, explain to me how I can tell you your doctor isn't treating you properly, yet still "support" you by telling you I think she's great. I'm sorry if I'm not telling you what you want to hear.
Sorry to have horned in on your chat with Jules. This is an open forum, and if you'd like to control access and content, then it's best to PM. It's a good way to reinforce your beliefs without exposing yourself to other opinions that might be construed as "negative". However, I agree with gimel's last paragraph.. I hope you feel free to post again if you seek further opinions and wish you the best in finding good health.
I think you misread what some of our very experienced members have tried to explain. There is no negativity here that is not justified by a specific example of mistreatment of a patient or apparent lack of understanding of some very important aspects of thyroid treatment. The basic reason you see so much feedback about poor treatment is that we hear only from patients that have problems, mostly due to misdiagnosis and mistreatment by their doctors. Obviously we don't hear from all those who are satisfied with their doctors and their treatment.
You also basically stated that doctors have so much more training and experience that we patients really should not presume to know better. I strongly disagree with that, not because I think we know everything, but there is a wealth of experience and knowledge on this Forum, and when results are not satisfactory, you need to ask questions. You'd be amazed at what you could find out on this Forum, if you were so inclined to continue to participate.
For example, you stated about your doctor, " I asked about the TSH and the F3, F4 and she said since its subclinical hypo, that she doenst need anything but TSH to manage the meds. She said she orders all those tests for Hyperthyroidism, not for subcl. hypo. She said TSH does not fluctuate on a diurnal basis and that the other two tests do. I have to do some reading on that, but she is an experienced endocrinogist, so I really dont think she is winging it". When you get around to reading on that you might be surprised to find that she is totally wrong about TSH not fluctuating on a diurnal basis. It actually has a Circadian Rhythm such that it is lowest at about 9 am and highest at about 9 pm. Further studies have shown that it sometimes fluctuates as much as 70 %. So was she just winging it, or is she just misinformed? Here is just one of many links about this.
http://www.endfatigue.com/health_articles_t-z/Thyroid-taking_thyroid_hormone_at_night.html
As far as managing meds with TSH, I'd just like to point out that TSH is a pituitary hormone that is affected by so many variables as part of the hypothalamus/pituitarythyroid system, that it does not correlate with the dependent variables we are really trying to fix, which are symptoms. If you have knowledge of statistical analysis, then you might recognize the difficulty of such a correlation since the dependent variables are subjective. However, those of us on the Forum that can read, have discovered that there are studies that show that the very best correlation to subjective ratings of 8 main symptoms was with the most active thyroid hormone, free T3. Given that this is the case, how can your doctor manage your subclinical hypothyroidism by using TSH to manage your meds, since TSH did not correlate with symptoms? TSH cannot even be shown to have a statistically sound correlation to the actual, biologically active thyroid hormones, FT3 and FT4. TSH is just a convenient, inexpensive test that has been used for decades, long before the development of accurate tests for the actual thyroid hormones. Now that we have such tests for FT3 and FT4, why should we ignore those and predominantly use TSH only?
The medical community cannot even agree about what range of TSH represents "normal". Over 8 years ago the AACE recommended that the ref. range for TSH should be changed from .5 - 5.0 down to .3 - 3.0, which is a huge change. Yet 8 years later, most labs and doctors still cling to the old range. Do you think we should just accept their position on TSH because they have more training than we do? I think not. If we did, many of us would still be suffering with lingering hypo symptoms.
I hope you can accept this response in a positive manner and visit with us some more. Our only intent on this Forum is to use our voluntary participation to try to help people with thyroid problems. If part of a patient's problem is clearly due to misdiagnosis and improper medication, then we feel obligated to question that and suggest alternatives. If the results from your further testing and treatment are less than satisfactory, then I sincerely hope you will feel comfortable enough to post again and discuss.
Best to you.
You also basically stated that doctors have so much more training and experience that we patients really should not presume to know better. I strongly disagree with that, not because I think we know everything, but there is a wealth of experience and knowledge on this Forum, and when results are not satisfactory, you need to ask questions. You'd be amazed at what you could find out on this Forum, if you were so inclined to continue to participate.
For example, you stated about your doctor, " I asked about the TSH and the F3, F4 and she said since its subclinical hypo, that she doenst need anything but TSH to manage the meds. She said she orders all those tests for Hyperthyroidism, not for subcl. hypo. She said TSH does not fluctuate on a diurnal basis and that the other two tests do. I have to do some reading on that, but she is an experienced endocrinogist, so I really dont think she is winging it". When you get around to reading on that you might be surprised to find that she is totally wrong about TSH not fluctuating on a diurnal basis. It actually has a Circadian Rhythm such that it is lowest at about 9 am and highest at about 9 pm. Further studies have shown that it sometimes fluctuates as much as 70 %. So was she just winging it, or is she just misinformed? Here is just one of many links about this.
http://www.endfatigue.com/health_articles_t-z/Thyroid-taking_thyroid_hormone_at_night.html
As far as managing meds with TSH, I'd just like to point out that TSH is a pituitary hormone that is affected by so many variables as part of the hypothalamus/pituitarythyroid system, that it does not correlate with the dependent variables we are really trying to fix, which are symptoms. If you have knowledge of statistical analysis, then you might recognize the difficulty of such a correlation since the dependent variables are subjective. However, those of us on the Forum that can read, have discovered that there are studies that show that the very best correlation to subjective ratings of 8 main symptoms was with the most active thyroid hormone, free T3. Given that this is the case, how can your doctor manage your subclinical hypothyroidism by using TSH to manage your meds, since TSH did not correlate with symptoms? TSH cannot even be shown to have a statistically sound correlation to the actual, biologically active thyroid hormones, FT3 and FT4. TSH is just a convenient, inexpensive test that has been used for decades, long before the development of accurate tests for the actual thyroid hormones. Now that we have such tests for FT3 and FT4, why should we ignore those and predominantly use TSH only?
The medical community cannot even agree about what range of TSH represents "normal". Over 8 years ago the AACE recommended that the ref. range for TSH should be changed from .5 - 5.0 down to .3 - 3.0, which is a huge change. Yet 8 years later, most labs and doctors still cling to the old range. Do you think we should just accept their position on TSH because they have more training than we do? I think not. If we did, many of us would still be suffering with lingering hypo symptoms.
I hope you can accept this response in a positive manner and visit with us some more. Our only intent on this Forum is to use our voluntary participation to try to help people with thyroid problems. If part of a patient's problem is clearly due to misdiagnosis and improper medication, then we feel obligated to question that and suggest alternatives. If the results from your further testing and treatment are less than satisfactory, then I sincerely hope you will feel comfortable enough to post again and discuss.
Best to you.
my post was not meant to insult anyone. I stated in it that I have run accross some medical folks in forums... and wondered if there might be one here. (re read the first paragraph... its says that straight out) That is all...and that does not take away my right to ask questions. I was having a conversation with Jules anyway before you guys added your voices.) Also, I was expressing my own opionions as you both did too. Your opinions are rather negative a lot of the time, but so be it. That is your right too. So, dont worry about it. Its not a big deal.
This is not my first time dealing with chronic illness... as I have several diseases and have had them for 15 years or more, nor is it not my first forum experience. I am used to helping others when it comes to questions about RA and have much to add on that. I know many are also patients here too. That wasnt the point... you guys totally missed it.
The point is, we are not doctors... so yes, read, read read... and be skeptical, but also remember that we didnt go to med school and then on to the specialty. You dont know the extent to which my doc is specialized in thyroid issues, so dont claim to have an opinion about her regurgitating info. You simply cant know based on this forum. I have seen many horrible docs too... and esp. for RA and now have one of the best in the US... so I know what you guys mean... but it would come off more positive to others to not place any opinion on others docs when you cant know. You dont know all there is to know even tho you may have lots of experience. I dont think I know everything about anything.
Anyway, I will just talk to Jules via message and avoid the negativity here. The heart forum is much more supportive.
This is not my first time dealing with chronic illness... as I have several diseases and have had them for 15 years or more, nor is it not my first forum experience. I am used to helping others when it comes to questions about RA and have much to add on that. I know many are also patients here too. That wasnt the point... you guys totally missed it.
The point is, we are not doctors... so yes, read, read read... and be skeptical, but also remember that we didnt go to med school and then on to the specialty. You dont know the extent to which my doc is specialized in thyroid issues, so dont claim to have an opinion about her regurgitating info. You simply cant know based on this forum. I have seen many horrible docs too... and esp. for RA and now have one of the best in the US... so I know what you guys mean... but it would come off more positive to others to not place any opinion on others docs when you cant know. You dont know all there is to know even tho you may have lots of experience. I dont think I know everything about anything.
Anyway, I will just talk to Jules via message and avoid the negativity here. The heart forum is much more supportive.
Whether you are hyper or hypo, have autoimmune disease or not, meds adjustments made on the basis of TSH alone are destined to get you into trouble. Read all you can, and you will see plenty of evidence supporting that on the net and on the forum. I don't think your doctor is "winging" it; I just think she's regurgitating what she learned in med school and hasn't bothered with much continuing education in the interim. I think your gut is telling you something...you obviously have questions about this doctor.
TSH is a pituitary hormone, so why would you test that to see what your thyroid hormone levels are? It doesn't make sense. Any number of factors in the thyroid/hypothalamus/pituitary feedback cycle can affect TSH.
All I can say is read, read, read, and I think your research will convince your brain that your gut is giving you good advice.
Very few of us have schooling in any medical field...we're patients...period. However, we study thyroid problems and hear from many patients who are not feeling well because their doctors are not treating them properly. We hear the same things over and over again, and one of the most prevalent is that the doctor is treating based on TSH only and the person still feels like he//. Another major complaint is that the doctor is just testing FT4 and TSH, and the patient is still unwell. So, there's just not getting around it...you have to test all three to get a complete thyroid picture. If you don't you're flying blind.
"...they do know how to manage the diseases they are specialists in...". Sometimes, yes, and sometimes, no. Some endos, for example, specialize in diabetes, have no interest in thyroid, and are really very poor thyroid doctors. We also hear that all the time.
TSH is a pituitary hormone, so why would you test that to see what your thyroid hormone levels are? It doesn't make sense. Any number of factors in the thyroid/hypothalamus/pituitary feedback cycle can affect TSH.
All I can say is read, read, read, and I think your research will convince your brain that your gut is giving you good advice.
Very few of us have schooling in any medical field...we're patients...period. However, we study thyroid problems and hear from many patients who are not feeling well because their doctors are not treating them properly. We hear the same things over and over again, and one of the most prevalent is that the doctor is treating based on TSH only and the person still feels like he//. Another major complaint is that the doctor is just testing FT4 and TSH, and the patient is still unwell. So, there's just not getting around it...you have to test all three to get a complete thyroid picture. If you don't you're flying blind.
"...they do know how to manage the diseases they are specialists in...". Sometimes, yes, and sometimes, no. Some endos, for example, specialize in diabetes, have no interest in thyroid, and are really very poor thyroid doctors. We also hear that all the time.
I'm a bit confused by your last post! If you truly feel your current Dr. has all the answers about your thyroid condition, why bother asking those outside of the medical profession? We are not Dr's here. I have seen a few nurses with thyroid problems and questions on this forum.
You're right to say that all bloodwork is not the same for all people....read through more posts and you'll see this said many times over!!
What we DO have to offer is years of difficulty with supposed "great thyroid" Doc's. I saw one that came highly recommended. He did not care AT ALL how I felt! Tested THS, FT4...and left me hypo. I have had nothing but stubborn, close minded Dr.'s. I no longer have much respect for the "profession". I have not been helped, so why should I??? Let's remember that respect needs to be earned!!!
I'm glad that you do trust, both your "gut" AND your Dr. I must say that I've been giving alot of thought lately to the fluctuations in thyroid blood work. This is , for me at least, is sounding more and more , contradictive! If all these tests fluctuate so wildly, and are as many Dr's will tell me, unreliable, why do they rely on them so heavily?
As far as the Dr. you have . If you feel you've found a good one, stick with her...I wish you well, and welcome to the thyroid community. :-) Thelma
You're right to say that all bloodwork is not the same for all people....read through more posts and you'll see this said many times over!!
What we DO have to offer is years of difficulty with supposed "great thyroid" Doc's. I saw one that came highly recommended. He did not care AT ALL how I felt! Tested THS, FT4...and left me hypo. I have had nothing but stubborn, close minded Dr.'s. I no longer have much respect for the "profession". I have not been helped, so why should I??? Let's remember that respect needs to be earned!!!
I'm glad that you do trust, both your "gut" AND your Dr. I must say that I've been giving alot of thought lately to the fluctuations in thyroid blood work. This is , for me at least, is sounding more and more , contradictive! If all these tests fluctuate so wildly, and are as many Dr's will tell me, unreliable, why do they rely on them so heavily?
As far as the Dr. you have . If you feel you've found a good one, stick with her...I wish you well, and welcome to the thyroid community. :-) Thelma
A few here seem to have very strong opinions on the tests and reliability there of... and I just wonder if you have any education or expertise behind that? Just curious... there are lots of knowledgeable folks on here. I dont mean that in a combative way, just curious as there may be some medically trained people on here, I have run into some on similar boards.
I have many years experience in RA can can give lots of advice on that, but I also know that there is much I do not know on things like bloodwork. All bloodwork does not work equally for all people, for one. That is why they are getting more into genetic aspects to determine better testing. But, that is another story... just trying to say that we dont know alll that they do.
anyway I think its good to remember that these docs do go thru years of schooling and further experience before they even get to see us... and that they are not all idiots. Of course, there are bad ones out there, lord knows my city has more that its share, but still. I think its good to keep in mind that they do know how to manage the diseases they are specialists in... and that they are most likely doing that for people much worse than what we have. I know from years of RA, fibro, Sjogrens... etc that there are always patients who have it much worse than I do, even when it seems pretty freakin bad for me.
I always trust my gut... but do also remember to respect the proffession as well.
anyway... I am glad I am getting treatment. Since its subclinical, other docs would not treat it...and I dont have to work to prove it. She has been on top of everything so I will keep at it too. Anyway, I dont have the luxery of trying antoher one out... my insurance doesnt cover but a few. She comes highly recommended.
cheers!
I have many years experience in RA can can give lots of advice on that, but I also know that there is much I do not know on things like bloodwork. All bloodwork does not work equally for all people, for one. That is why they are getting more into genetic aspects to determine better testing. But, that is another story... just trying to say that we dont know alll that they do.
anyway I think its good to remember that these docs do go thru years of schooling and further experience before they even get to see us... and that they are not all idiots. Of course, there are bad ones out there, lord knows my city has more that its share, but still. I think its good to keep in mind that they do know how to manage the diseases they are specialists in... and that they are most likely doing that for people much worse than what we have. I know from years of RA, fibro, Sjogrens... etc that there are always patients who have it much worse than I do, even when it seems pretty freakin bad for me.
I always trust my gut... but do also remember to respect the proffession as well.
anyway... I am glad I am getting treatment. Since its subclinical, other docs would not treat it...and I dont have to work to prove it. She has been on top of everything so I will keep at it too. Anyway, I dont have the luxery of trying antoher one out... my insurance doesnt cover but a few. She comes highly recommended.
cheers!
I might have Hashi's so I am getting an ultrasound on my thyroid soon. She cant rule it out yet and my thyroid has been a bit palpable and large for all year.
Last visit, my TSH was actually higher than before treatment... not by much. So she increased the dose to .075mg.
I asked about the TSH and the F3, F4 and she said since its subclinical hypo, that she doenst need anything but TSH to manage the meds. She said she orders all those tests for Hyperthyroidism, not for subcl. hypo. She said TSH does not fluctuate on a diurnal basis and that the other two tests do. I have to do some reading on that, but she is an experienced endocrinogist, so I really dont think she is winging it.
I always keep my eyes open for flakey docs tho... been at this for 15 years with all my diseases... so I trust my gut feelings and do my homework too.
good luck everyone, hope you guys are feeling as good as possible.
Last visit, my TSH was actually higher than before treatment... not by much. So she increased the dose to .075mg.
I asked about the TSH and the F3, F4 and she said since its subclinical hypo, that she doenst need anything but TSH to manage the meds. She said she orders all those tests for Hyperthyroidism, not for subcl. hypo. She said TSH does not fluctuate on a diurnal basis and that the other two tests do. I have to do some reading on that, but she is an experienced endocrinogist, so I really dont think she is winging it.
I always keep my eyes open for flakey docs tho... been at this for 15 years with all my diseases... so I trust my gut feelings and do my homework too.
good luck everyone, hope you guys are feeling as good as possible.
I agree. TSH is the test that's unreliable...not only does TSH vary considerably even intraday, but it's several steps removed from actual thyroid function and can be affected by many factors along the way. Anything in the thyroid/hypothalamus/pituitary feedback cycle can alter TSH and make it useless.
So, if the frees are not monitored, you and your doctor are basically flying blind. FT4 is VERY accurate. I think what your doctor was saying (don't get me wrong, I'm not defending her here) was that once on meds, FT4 is a MEDICATED FT4...it doesn't tell you what your thyroid function is anymore. But, what it does tell you is how well your meds are doing...and that's all that's important...we already know your thyroid is kaput...what we want to see is if the meds have brought your free levels up to where they should be.
Not testing FT3 assumes that you are properly converting T4 to T3. Theoretically, if FT4 is good, so should FT3 be. BUT, we are not theories, we're people, and if something can go wrong, it will in some people. Why assume something when there is a cheap, simple bloodtest that can verify it?
I do think that you need to lose this doctor. She is exactly what we do not need teaching the next generation of doctors...how pathetic.
Your endo has to treat your symptoms or you will never feel really well.
Another U/S is an alternative. I was just looking at the MRI because you were already having that for the vocal chord issue. It's often the thyroid pressing on the laryngeal nerve that causes the voice changes that many with thyroid disease duffer.
So, if the frees are not monitored, you and your doctor are basically flying blind. FT4 is VERY accurate. I think what your doctor was saying (don't get me wrong, I'm not defending her here) was that once on meds, FT4 is a MEDICATED FT4...it doesn't tell you what your thyroid function is anymore. But, what it does tell you is how well your meds are doing...and that's all that's important...we already know your thyroid is kaput...what we want to see is if the meds have brought your free levels up to where they should be.
Not testing FT3 assumes that you are properly converting T4 to T3. Theoretically, if FT4 is good, so should FT3 be. BUT, we are not theories, we're people, and if something can go wrong, it will in some people. Why assume something when there is a cheap, simple bloodtest that can verify it?
I do think that you need to lose this doctor. She is exactly what we do not need teaching the next generation of doctors...how pathetic.
Your endo has to treat your symptoms or you will never feel really well.
Another U/S is an alternative. I was just looking at the MRI because you were already having that for the vocal chord issue. It's often the thyroid pressing on the laryngeal nerve that causes the voice changes that many with thyroid disease duffer.
COMMUNITY LEADER
Yes, it's possible for your TSH to be within the normal range and your FT3 not; or maybe FT3 is even in range, but not high enough for you.
I'd be a lot more impressed with your endo being Chair of Endocrinology at a teaching hospital is she were testing for the right things. I don't see how she can say FT4 isn't accurate when you're on medication. The reason for testing FT4 is to make sure the medication is doing what it's supposed to do (i.e. bring your levels to a point of alleviating your symptoms). Likewise, I agree that the TT3 test is unreliable, because they have no idea how much of the total T3 is bound by protein and therefore, unusable; that's the reason for testing Free T3; because that's the test that tells how much T3 is actually available for use.
Sorry, but I'd be looking for another endo, even if this one IS the Chair of Endocrinology; she's obviously teaching a whole new crop of endos to treat patients the same way she's treating you, which will leave a whole bunch more people to be left sick for far longer than necessary.
I'd be a lot more impressed with your endo being Chair of Endocrinology at a teaching hospital is she were testing for the right things. I don't see how she can say FT4 isn't accurate when you're on medication. The reason for testing FT4 is to make sure the medication is doing what it's supposed to do (i.e. bring your levels to a point of alleviating your symptoms). Likewise, I agree that the TT3 test is unreliable, because they have no idea how much of the total T3 is bound by protein and therefore, unusable; that's the reason for testing Free T3; because that's the test that tells how much T3 is actually available for use.
Sorry, but I'd be looking for another endo, even if this one IS the Chair of Endocrinology; she's obviously teaching a whole new crop of endos to treat patients the same way she's treating you, which will leave a whole bunch more people to be left sick for far longer than necessary.
It makes more sense to me just to have another ultrasound done so the results can be easily compared--i.e. what does the thyroid look like compared to two years ago? But apparently, my endo isn't worried...she just assumes if there's something wrong with my thyroid it will be blatantly obvious on the MRI (like a solitary nodule). Otherwise, I don't see how the MRI is going to help determine if my thyroid tissue is looking better or worse than before. Also, when I have the MRI done, it gets sent straight to the radiologist who is sitting in some room somewhere in the medical building. I never get to meet him, so he reads my scan at his leisure, makes his report, and then I pick it up within a day or two. So unfortunately, I don't have a chance to tell him to pay attention to my thyroid, not just the nerves in my neck. I don't think it'd matter, anyway...he's probably going to focus on whatever my doctor wrote on my script.
My endo still didn't order anything beyond TSH; she told me that my medication is T4, so any T4 test I have done won't really be accurate. When I asked about the T3 tests, she didn't address whether or not she thought my T3 might be an issue; she just told me that the T3 test isn't very reliable since it depends on so many factors, and that unfortunately, the FT3 test is even less accurate (which I didn't think was true...?). I didn't bother arguing with her because she's the type who will act really polite and nice but won't budge on anything. Only once was I able to catch her admitting that she wasn't sure why my test results came out the way they did. Rarely does she show any signs of being confused or uncertain...I guess being the Chair of Endocrinology at a teaching hospital has given her a lot of confidence in what she does.
Is it possible for TSH to be within normal range (measured consistently, not just once) while T3 isn't? I'm worried that perhaps my problem is with converting T4 to T3, but my TSH will come back normal in July when I have it measured again, so my endo will assume my medication dose is fine and I need no further treatment...even though I might still have all of the hypo symptoms.
My endo still didn't order anything beyond TSH; she told me that my medication is T4, so any T4 test I have done won't really be accurate. When I asked about the T3 tests, she didn't address whether or not she thought my T3 might be an issue; she just told me that the T3 test isn't very reliable since it depends on so many factors, and that unfortunately, the FT3 test is even less accurate (which I didn't think was true...?). I didn't bother arguing with her because she's the type who will act really polite and nice but won't budge on anything. Only once was I able to catch her admitting that she wasn't sure why my test results came out the way they did. Rarely does she show any signs of being confused or uncertain...I guess being the Chair of Endocrinology at a teaching hospital has given her a lot of confidence in what she does.
Is it possible for TSH to be within normal range (measured consistently, not just once) while T3 isn't? I'm worried that perhaps my problem is with converting T4 to T3, but my TSH will come back normal in July when I have it measured again, so my endo will assume my medication dose is fine and I need no further treatment...even though I might still have all of the hypo symptoms.
My endo palpated my thyroid while swallowing and her only comment was that it seemed to be moving well. She didn't tell me whether or not she noted any tenderness or swelling, but I requested that the receptionist mail me any copies of reports my endo writes to my GP. The receptionist told me that she had to get "permission" from my endo before she could send the copy directly to me, but apparently didn't need permission if she was just sending the copy to another doctor. Ridiculous! I insisted that she get permission and send me copies, anyway. I want to know exactly what I'm being diagnosed with, and what the endo's thoughts are since she doesn't explicitly state them unless I ask her to.
The hormonal therapy I'm on is very mild (50 mcg/day), so it may not have been enough with my thyroid slowly getting worse, as in, the hormonal therapy may have just "kept up" with my thyroid's failing...so instead of getting larger or smaller, my thyroid is maintaining its slightly engorged size.
The hormonal therapy I'm on is very mild (50 mcg/day), so it may not have been enough with my thyroid slowly getting worse, as in, the hormonal therapy may have just "kept up" with my thyroid's failing...so instead of getting larger or smaller, my thyroid is maintaining its slightly engorged size.
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My former pcp once told me that FT3 was useless, too; then the next time, said it was used "for research purposes only, never for diagnostics or med dosing. Sure glad I kicked him to the curb!!!
Can't believe what we are up against with these doctors.
Can't believe what we are up against with these doctors.
I think to some extent, it's hard to avoid "seeing" the thyroid with any neck MRI. My neighbor was in a car accident and had neck pain, so they did an MRI...nothing on the pain, but they did see some very suspicious nodules on her thyroid. So, I think some abnormalities mught be picked up. You might also mention your thyroid concerns to the radiologist. That might inspire him to do a "little more looking" at your thyroid. Be sure to be insistent about it...he should want to be aware of known problems.
Any endo that says FT3 is not important should be taken out and maimed! Sorry, but with your FT4 (did she even run that this time?) looking pretty good last time it was done, FT3 HAS to be in question. A little more levo might help, but if you are not converting properly (look at the TT3 from last August for what it's worth), you can up your levo till the cows come home, and you're still going to feel hypo.
I'd start a search for a new doctor...this one sounds pretty useless.
Any endo that says FT3 is not important should be taken out and maimed! Sorry, but with your FT4 (did she even run that this time?) looking pretty good last time it was done, FT3 HAS to be in question. A little more levo might help, but if you are not converting properly (look at the TT3 from last August for what it's worth), you can up your levo till the cows come home, and you're still going to feel hypo.
I'd start a search for a new doctor...this one sounds pretty useless.
If you can repeat the swallowing test you did 2 years ago, and compare the results you may be able to catch some changes. I am not sure if thyroid size obtained from MRI test will differ much compared to the ultrasound; in theory, the hormonal therapy should shrink the thyroid to some extent
Thanks for your response!
The lump in my throat hasn't gone away and while my thyroid has been "tender" and mildly enlarged, I think this throat issue is actually a result of superior laryngeal nerve damage that my ENT discovered. My right vocal cord is only functioning at 60% rather than 100%, like my left vocal cord. No one is sure how this nerve damage came about, but I've surmised that is from my pineal cyst or some sort of transient ischemic attack. No one has any better ideas!
I just saw my endo last week and asked if she thought I should have another ultrasound since I haven't had one in two years, but she said she didn't think it'd be necessary, especially since I'm having an MRI of my throat done soon for the nerve damage. But if the radiologist isn't looking for a thyroid problem...will they really bother to look at the thyroid unless something is popping out at them (like a huge, solitary nodule)? I doubt it. I guess I'll have to cross my fingers and hope the radiologist is looking for problems anywhere in my throat and not just near the affected nerve.
My endo also didn't think my T3 was a problem and said FT3 is a useless test since it fluctuates so much. She did find from my TSH that I am hypothyroid still (5.9 was my latest TSH, which is the highest it's been in awhile, actually), so she upped my Levothyroxine from 50 mcg to 75 mcg daily. Other than this, she just listened to all my symptoms, which made me sound very hypo, and said "hmmm" a lot. She wants to see me back in 2 months after checking my TSH again...and she agreed that I should have it measured in the morning even though she told me during my last visit that it didn't matter!
The lump in my throat hasn't gone away and while my thyroid has been "tender" and mildly enlarged, I think this throat issue is actually a result of superior laryngeal nerve damage that my ENT discovered. My right vocal cord is only functioning at 60% rather than 100%, like my left vocal cord. No one is sure how this nerve damage came about, but I've surmised that is from my pineal cyst or some sort of transient ischemic attack. No one has any better ideas!
I just saw my endo last week and asked if she thought I should have another ultrasound since I haven't had one in two years, but she said she didn't think it'd be necessary, especially since I'm having an MRI of my throat done soon for the nerve damage. But if the radiologist isn't looking for a thyroid problem...will they really bother to look at the thyroid unless something is popping out at them (like a huge, solitary nodule)? I doubt it. I guess I'll have to cross my fingers and hope the radiologist is looking for problems anywhere in my throat and not just near the affected nerve.
My endo also didn't think my T3 was a problem and said FT3 is a useless test since it fluctuates so much. She did find from my TSH that I am hypothyroid still (5.9 was my latest TSH, which is the highest it's been in awhile, actually), so she upped my Levothyroxine from 50 mcg to 75 mcg daily. Other than this, she just listened to all my symptoms, which made me sound very hypo, and said "hmmm" a lot. She wants to see me back in 2 months after checking my TSH again...and she agreed that I should have it measured in the morning even though she told me during my last visit that it didn't matter!
The other weird thing is that my endo doc already told me I didnt have Hashi's... but maybe she is checking to make sure. With me having several auto immune diseases already, it would seem worth it to recheck. But, she said these tests I just did were for the med. monitoring, so that bugs me that she didnt add the FT3 and FT4. I had read a while back about the F3&4 being obsolete. Seems like docs havent seen that memo. I swear my gyn ordered those for me too. Ugh!
thanks for your input. That is what I thought about the tests. Thanks. I actually see that doc tomorrow and I am going to ask her specifically. She seems kinda flakey sometimes and then brilliant other times! I hope she is good enough since the other endo docs I can see, which are few, on my insurance are not accepting new patients. It took me a year to get into this one! That *****.
Anyway, I will see what she says. I know I am a super complicated case, having so many auto immune disease already and now the heart thing... so I am being patient. I sure have learned how to be patient with the other diseases!
Hope you all are feeliing well today! Cheers!
Anyway, I will see what she says. I know I am a super complicated case, having so many auto immune disease already and now the heart thing... so I am being patient. I sure have learned how to be patient with the other diseases!
Hope you all are feeliing well today! Cheers!
Although it is not commonly offered in this case but RAI evaluation of the thyroid for uptake distribution may be helpful (patchy uptake may point to thyroiditis!)
Sorry to be so long in answering...computer problems today (and more to figure out tomorrow).
It's very interesting that your ENT ordered more complete thyroid tests than your endo does!
Did ENT order an ultrasound to check for the feeling of a lump in your throat? Since that was last August, has the feeling gone away?
Unfortunately, the August labs are a bit old to be relevant...so much might have changed. However, I'd definitely ask your endo for his interpretation of the low T3. Also, it's a total T3, not free, so makes it even more useless. I'd definitely bring it up with your endo...it's important. Your FT4 is right at midrange, which is where it's supposed to be, so I think you should definitely look at FT3. A little T3 added to your meds might make you feel so much better.
I read not too long ago where a change in TSH intraday of 200% is quite possible. My endo also agrees that it's a percentage, not raw numbers.
Let us know how your appointment goes...
It's very interesting that your ENT ordered more complete thyroid tests than your endo does!
Did ENT order an ultrasound to check for the feeling of a lump in your throat? Since that was last August, has the feeling gone away?
Unfortunately, the August labs are a bit old to be relevant...so much might have changed. However, I'd definitely ask your endo for his interpretation of the low T3. Also, it's a total T3, not free, so makes it even more useless. I'd definitely bring it up with your endo...it's important. Your FT4 is right at midrange, which is where it's supposed to be, so I think you should definitely look at FT3. A little T3 added to your meds might make you feel so much better.
I read not too long ago where a change in TSH intraday of 200% is quite possible. My endo also agrees that it's a percentage, not raw numbers.
Let us know how your appointment goes...
Whoops, I forgot to mention all of my bloodwork. I guess it wouldn't be useful if I just mentioned total T3.....
These results are all from late last August, the last time I really had any extensive bloodwork done:
TSI: 95 (range: less than or equal to 125% is the baseline)
TSH: 1.58 (range: 0.4 - 4.5 is normal)
Total T3: 100 (range: 97 - 219 is normal)
Total T4: 9.9 (range: 4.5 - 12.5 is normal)
Free T4: 1.3 (range: 0.8 - 1.8 is normal)
I had my TSH done about three weeks ago since I'm seeing the endo this week, but I haven't gotten the results of that yet, and I didn't have any other thyroid bloodwork done...just TSH. The extensive tests above were ordered by my ENT for some reason. I guess he was checking my thyroid function since I was complaining of a lump in my throat and he found nerve damage to my superior laryngeal nerve.
Should I bring up the low T3 level since I haven't talked about this with my endo, to date?
These results are all from late last August, the last time I really had any extensive bloodwork done:
TSI: 95 (range: less than or equal to 125% is the baseline)
TSH: 1.58 (range: 0.4 - 4.5 is normal)
Total T3: 100 (range: 97 - 219 is normal)
Total T4: 9.9 (range: 4.5 - 12.5 is normal)
Free T4: 1.3 (range: 0.8 - 1.8 is normal)
I had my TSH done about three weeks ago since I'm seeing the endo this week, but I haven't gotten the results of that yet, and I didn't have any other thyroid bloodwork done...just TSH. The extensive tests above were ordered by my ENT for some reason. I guess he was checking my thyroid function since I was complaining of a lump in my throat and he found nerve damage to my superior laryngeal nerve.
Should I bring up the low T3 level since I haven't talked about this with my endo, to date?
Wow, I thought it was those signs that were causing my problems, but it would only do it sporadically and only with some of the signs, so I wasn't convinced. I'm glad to know I'm not crazy! I'll type them out from now on to avoid further issues.
Actually, with my post, it deleted several sentences in between. So the value of 92 was referring to my T3, which another one of my specialists ordered (not the endo), where the range was about 90 to 220 being "normal". I thought that my T3 could be a culprit since it's on the much lower side. Maybe I'll bring this up to my endo when I see her this Thursday. I'm just not convinced she's going to do anything about it, because she's already skeptical that my thyroid disease is anything more than a transient occurrence. To reiterate my results, my TgAb was less than 20, with a range being less than or equal to 20 was normal. My TPOAb was less than 10 with a range being less than or equal to 30 was normal.
I know it's normal for many levels to fluctuate throughout the day, from red blood cells to cortisol to TSH. What I didn't know was how much it was supposed to fluctuate. When I posted a question for Dr. Lupo about two years ago, he indicated that it shouldn't fluctuate too much (maybe something like 1.5 in the morning to 1.2 in the afternoon was normal), but mine was fluctuating greatly enough for the doctors to be confused as to how I went from being 5.5 when it was measured in the morning to 1.4 when it was measured in the afternoon. Honestly, I think they assumed it wouldn't fluctuate much, if at all, so they were viewing my results as absolute, no matter what time of the day I had it measured. To them, this meant that one week, my TSH was 1.4, then another week it was 5.5, then another week it was 3.75.
Nevertheless, after being put on 50 mcg of Levothyroxine, my numbers have stopped fluctuating as much, but I can't say that most of my symptoms have disappeared. The only symptom that appeared to get better was hair thinning.
Does anyone have any thoughts on what I could say to my endo this week to convince her that she should be measuring more than just my TSH?
Actually, with my post, it deleted several sentences in between. So the value of 92 was referring to my T3, which another one of my specialists ordered (not the endo), where the range was about 90 to 220 being "normal". I thought that my T3 could be a culprit since it's on the much lower side. Maybe I'll bring this up to my endo when I see her this Thursday. I'm just not convinced she's going to do anything about it, because she's already skeptical that my thyroid disease is anything more than a transient occurrence. To reiterate my results, my TgAb was less than 20, with a range being less than or equal to 20 was normal. My TPOAb was less than 10 with a range being less than or equal to 30 was normal.
I know it's normal for many levels to fluctuate throughout the day, from red blood cells to cortisol to TSH. What I didn't know was how much it was supposed to fluctuate. When I posted a question for Dr. Lupo about two years ago, he indicated that it shouldn't fluctuate too much (maybe something like 1.5 in the morning to 1.2 in the afternoon was normal), but mine was fluctuating greatly enough for the doctors to be confused as to how I went from being 5.5 when it was measured in the morning to 1.4 when it was measured in the afternoon. Honestly, I think they assumed it wouldn't fluctuate much, if at all, so they were viewing my results as absolute, no matter what time of the day I had it measured. To them, this meant that one week, my TSH was 1.4, then another week it was 5.5, then another week it was 3.75.
Nevertheless, after being put on 50 mcg of Levothyroxine, my numbers have stopped fluctuating as much, but I can't say that most of my symptoms have disappeared. The only symptom that appeared to get better was hair thinning.
Does anyone have any thoughts on what I could say to my endo this week to convince her that she should be measuring more than just my TSH?
HI know the feeling, I had given these symptom to my doc two years 2 weeks before I found out I was preggo with my 2nd son he only checked my tsh levels and said they were normal, I don't remember if they were on the high end of normal or not, but after I found out I was pregnant again I didn't question it as the symptoms are the same when your pregnant. I just wonder if there are reasons it can test with in normal range and if it's on the high end and you have these symptoms why do doc's not try to treat? what are they so scared of ...do they just want to wait until your 60 lbs over weight and then pretty much tell you your a fat lazy pig and you need to exercise... My doc didn't refer me to an Endocrinologist? why? I feel like I need a new primary physician!
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