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REQUESTING OF FREE T3 TESTING
Due to controversy from quite a few posters on this site, i have decided to contact my endo and request free t3 testing on my next labs (april). To make a long story short. TT on 12/17/09, 1st set of labs in jan resulted in
TSH- 3rd generation @ 39.51 (0.40-4.50)
Free t4 @0.3 (0.8-1.8)
Total T4 @ 2.5 (4.5-12.5)
T3 uptake @ 25 (22-35)
Free t4 Calc @ 0.6 (1.4-3.8)
Feb labs resulted in:
TSH- 3rd generation @13.76 (0.40-4.50)
Free T4 @ 0.9 (0.8-1.8)
Total T4 @ 7.2 (4.5-12.5)
T3 uptake @ 27 (22-35)
Free T4 Calc 1.9 (1.4-3.8)
Thyroglobulin AB @ <20 (,20)
In both labs, there were no Free T3 testing requested.I called my endo based on opinons of posters on this site,and she returned the call today ' and i explained to her that ive spoken to people in the same situation as myself and i also read materials stating that the Free T3 testing is important when testing to determine how a patient is feeling as far as symptoms of hypothyroidism along with the TSH and Free T4... she says: due to the fact that i am still in transition in getting my levels normal' because i had surgery only 2 mos ago, that testing for Free T3 is not necessary unless further down the road, my levels are normal and i am having major hypo symptoms "still", is when that test is necessary. She says that she is satisfied that my levels are on its way to normal but wants my TSH and my Free T4 to improve.
To me, this make sense as i retake labs in april and pray that they are closer to normal.
Any Opinons????
TSH- 3rd generation @ 39.51 (0.40-4.50)
Free t4 @0.3 (0.8-1.8)
Total T4 @ 2.5 (4.5-12.5)
T3 uptake @ 25 (22-35)
Free t4 Calc @ 0.6 (1.4-3.8)
Feb labs resulted in:
TSH- 3rd generation @13.76 (0.40-4.50)
Free T4 @ 0.9 (0.8-1.8)
Total T4 @ 7.2 (4.5-12.5)
T3 uptake @ 27 (22-35)
Free T4 Calc 1.9 (1.4-3.8)
Thyroglobulin AB @ <20 (,20)
In both labs, there were no Free T3 testing requested.I called my endo based on opinons of posters on this site,and she returned the call today ' and i explained to her that ive spoken to people in the same situation as myself and i also read materials stating that the Free T3 testing is important when testing to determine how a patient is feeling as far as symptoms of hypothyroidism along with the TSH and Free T4... she says: due to the fact that i am still in transition in getting my levels normal' because i had surgery only 2 mos ago, that testing for Free T3 is not necessary unless further down the road, my levels are normal and i am having major hypo symptoms "still", is when that test is necessary. She says that she is satisfied that my levels are on its way to normal but wants my TSH and my Free T4 to improve.
To me, this make sense as i retake labs in april and pray that they are closer to normal.
Any Opinons????
Also wanted to ask if B-12 supplements would help? My level of VitD is low so I take 2500 units daily. B12 and Calcium were within range so I havent been taking those. I used to pop one of those Viactive chews after dinner, but they seemed to be upsetting my stomach. I have a sensitive stomach as well. Ugh! Lol. So, just wondering if along with my multi and extra VitD if B12 would help..and if so, how much? Thanks!!
I have been keeping up with this post all along and can't thank you all enough for sharing your personal stories. It really helps those that are new to all of this, such as myself. My endo is like Barbara's. Stern and almost gives me a look like "you know nothing about this and I've been dealing with these issues 25yrs!" Today i am going to get my lab report..(the last one I had done without the FT3 & FT4)..but I did leave a message to speak with Endo today that I wanted to know if TSH lowered..although, I'm guessing it didn't by much as I was only on my new dose of 75mcg for almost 3wks at that point..(I was feeling bad and he told me to get bw done @ that point.) But I also stated on my message that from now on I would like the "frees" tested because I'm going on the advice of many who have had TT done and that's what their drs do....wouldn't dare tell him about the internet either! Lol. Anyway, my TSH was 66 before and i've said before, he started me on 50mcg after TT 12/17/09 and didn't change it to 75 mcg until Feb 13th. I understood his reasoning there because I'm very sensitive to meds, changes in dose and prone to anxiety..but I feel he should have raised me a bit sooner to the 75mcg because I still feel like crap. I only have a few pills left and I'm sure he will raise me. I'm wondering if it will be to 88mcg or 100? I guess i'm hoping 100 so maybe I'll start feeling better and I don't think it would be to big a jump since I went from 50 to 75 with no problems. Point being...I WILL have those frees tested with next bloodwork. Anything to help me feel better faster. I realize it takes time, but I'm not seeing any type of improvement. One more thing..I hope the next bump in med doesn't make me go hyper..that sounds awful and I definately don't need anymore anxious feelings!....Thank you all so much. Lynda xo.
I never mention the internet to doctors. I have mentioned The New England Journal of Medicine and its support of T3 - doctors should look up then, its medical documented proof. thyroidabout (Mary S's site) has links to NEJoM.
It's a great thing that people on this site who are experienced are not only sharing their "personal" stories but are also informing those who are just starting to go through the thyroid "issues", and i truly appreciated every bit of advice.
One way to explain it to her is.....
I have read that Ft3 testing is one way of dosing a T4 med so I do not suffer with med induced hyper or T3 toxycosis where the T4 med it too high and causes the FT3 to go too high.
The Ft3 also shows whether your body is 'converting' the T4 med correctly.
Hope that helps and good luck :o)
I have read that Ft3 testing is one way of dosing a T4 med so I do not suffer with med induced hyper or T3 toxycosis where the T4 med it too high and causes the FT3 to go too high.
The Ft3 also shows whether your body is 'converting' the T4 med correctly.
Hope that helps and good luck :o)
Thank you for posting this very imformative statement, because, as i attempt to bring these issues and concerns to my doctor, although she listened and explained her point of view. this particular endo is a very fiesty woman and very stern on her decisions. I can honestly tell you that i had a bit of anxiety just presenting the subject of Free T3 testing to her because i felt as if, here i am, just a patient and who am i to tell an experienced endo what to test. AS you mentioned in your post, sometimes patient's can teach doc's new "tricks", however it actually depends on the the personality of each doc and which ones are willing to listen.
For those patients who are very timid and don't want to stir up their physicians...how would you suggest that they approach the "topic" of testing Free T3's or any other tests for that matter instead of "demanding" that they perform tests that they normally do not??????
I approach my endo in a very typical way...instead of saying that i've been online talking to folks and they suggested that i ask for this testing, my approach was this: I know a few people who are in the same situation as myself and they're Free T3's are being tested and i understand that this is an very important test so, is there a reason that you aren't testing??????? That's when she explained her method.
For those patients who are very timid and don't want to stir up their physicians...how would you suggest that they approach the "topic" of testing Free T3's or any other tests for that matter instead of "demanding" that they perform tests that they normally do not??????
I approach my endo in a very typical way...instead of saying that i've been online talking to folks and they suggested that i ask for this testing, my approach was this: I know a few people who are in the same situation as myself and they're Free T3's are being tested and i understand that this is an very important test so, is there a reason that you aren't testing??????? That's when she explained her method.
I have Graves and had hyperthyroidism...had RAI first (surgery too risky - history of thyroid storms) and then a TT 3 months later.
That was june & Sept. 2008.
From the time I was diagnosed with Graves....I have had FT3, FT4 and TSH done on EVERY test.
This was to basically check that I wasnt going T3 toxycosis (high FT3) with thyroxin.
To cut a long story short....I got my levels good , FT3 and FT4 at a comfortable range and TSH at a comfortable range too....
THEN come Xmas 2009,,,,,,,something happened out of the blue.
My Ft3 and FT4 was great but my TSH was going UP.
I knew something was wrong as I felt 'different'.
With dealing with my best friends death and then my Fathers death in January, I put things on 'hold' as wasnt mentally strong enough to deal with it but all along, I knew something was not quite right.
I started to feel as if I was hyper then hypo then hyper YET my FT3 and FT4 was fine.
My TSH then started to 'climb' for no reason.
At first I thought ..stress then things started to happen.
Firstly I had the worst case of vertigo I had ever had, I got headaches like my head was being squashed in a vice (only way to describe it), eyesight went worst with reading even though I got new reading glasses.
Well after nearly 3 months and strong enough to cope with it, I went for an ultrasound and CT scan and a Pit. tumour was found a few days ago.
Had I NOT had the FT3 done all along, I wouldnt have been able to distinguish if I was low on FT3 or high on TSH,
I dont care what anyone says....get that FT3 done with every set of labs you have done.
Because that is what distinguished that I possibly had a pituitary tumour and NOT a low FT3.
In about 10 weeks, my TSH has gone from 2.3 to over 7.0 with 2 increases in doses.
Dont give a damn if your Doctor is perplexed that YOU know more than him/her...its your body and your life.
Demand the Ft3 and if they say,......we'll do it later down the track...tell them.."I'm sorry but thats unacceptable".
I couldve gone and got checked early January with a CT sv=can but deep down I knew that it wasnt my levels 'out of whack'.
I just wasnt strong enough to cope with it then but I am now.
Demand what you want ....dont take no for an answer because as I said ...I've had FT3 done from day one (with a thyroid) and also had it done with NO thyroid.
Hope that helps :o)
That was june & Sept. 2008.
From the time I was diagnosed with Graves....I have had FT3, FT4 and TSH done on EVERY test.
This was to basically check that I wasnt going T3 toxycosis (high FT3) with thyroxin.
To cut a long story short....I got my levels good , FT3 and FT4 at a comfortable range and TSH at a comfortable range too....
THEN come Xmas 2009,,,,,,,something happened out of the blue.
My Ft3 and FT4 was great but my TSH was going UP.
I knew something was wrong as I felt 'different'.
With dealing with my best friends death and then my Fathers death in January, I put things on 'hold' as wasnt mentally strong enough to deal with it but all along, I knew something was not quite right.
I started to feel as if I was hyper then hypo then hyper YET my FT3 and FT4 was fine.
My TSH then started to 'climb' for no reason.
At first I thought ..stress then things started to happen.
Firstly I had the worst case of vertigo I had ever had, I got headaches like my head was being squashed in a vice (only way to describe it), eyesight went worst with reading even though I got new reading glasses.
Well after nearly 3 months and strong enough to cope with it, I went for an ultrasound and CT scan and a Pit. tumour was found a few days ago.
Had I NOT had the FT3 done all along, I wouldnt have been able to distinguish if I was low on FT3 or high on TSH,
I dont care what anyone says....get that FT3 done with every set of labs you have done.
Because that is what distinguished that I possibly had a pituitary tumour and NOT a low FT3.
In about 10 weeks, my TSH has gone from 2.3 to over 7.0 with 2 increases in doses.
Dont give a damn if your Doctor is perplexed that YOU know more than him/her...its your body and your life.
Demand the Ft3 and if they say,......we'll do it later down the track...tell them.."I'm sorry but thats unacceptable".
I couldve gone and got checked early January with a CT sv=can but deep down I knew that it wasnt my levels 'out of whack'.
I just wasnt strong enough to cope with it then but I am now.
Demand what you want ....dont take no for an answer because as I said ...I've had FT3 done from day one (with a thyroid) and also had it done with NO thyroid.
Hope that helps :o)
Actually what I was going to finish writing came out after the following posts from members...
It is a very confusing thing - this thyroid controversy.... and its tough on the patient when things aren't going as smooth as they were told by many doctors caring for them...
the thing is.... I don't feel that switching doctors is always the answer either.... If we keep leaving doctors instead of trying to talk to them on their level and let them see what we are always finding out - then maybe - in the end,... these doctors who didn't believe in testing the frees would eventually... wouldn't that make thyroid issues so much easier?
There is no denying that when a patient has exhausted their options with a doctor and starts the endless search of thyroid information on their own that when the patient uncovers there are so many options - labs and information out there available to get better they want to try options themselves. - So as a doctor I ask.. Why NOT do the tests? - Why not talk more about T3?
Why is this hidden so much by doctors and only patients that plunged into learning on their own find good things after all that digging? Of course than after learning - now locating a doctor to assist them is next (sigh)
I mean, compared to the beginning of my thyroid histroy... I really have done a 360 in the care I first got - vs - now... and I never felt better.. Why did I have to go to the extreme of learning so much all alone ( years) more importantly so ill too??? - when these doctors went to school to practice exactly what I learned?
If I wouldn't have had a support at home both financially and family help... I know for sure I never would have had the time to learn so much as I did and now being so actively global with many doctors and specialists that practice the information I learned alone. I'd probably still be sick truthfully and that makes me angry.
Seriously - it feels like its another world at times with how many differences there are in treatment - and all of them being practiced but so seperately and with so much controversy. Us poor patients - if just trusting and not learning some themselves- can really wind up miserable and that to me is very sad.
and that's thyroid talking only.... can you imagine all the other thing that are just like this stuff? very overwhelming for me to even think.
It is a very confusing thing - this thyroid controversy.... and its tough on the patient when things aren't going as smooth as they were told by many doctors caring for them...
the thing is.... I don't feel that switching doctors is always the answer either.... If we keep leaving doctors instead of trying to talk to them on their level and let them see what we are always finding out - then maybe - in the end,... these doctors who didn't believe in testing the frees would eventually... wouldn't that make thyroid issues so much easier?
There is no denying that when a patient has exhausted their options with a doctor and starts the endless search of thyroid information on their own that when the patient uncovers there are so many options - labs and information out there available to get better they want to try options themselves. - So as a doctor I ask.. Why NOT do the tests? - Why not talk more about T3?
Why is this hidden so much by doctors and only patients that plunged into learning on their own find good things after all that digging? Of course than after learning - now locating a doctor to assist them is next (sigh)
I mean, compared to the beginning of my thyroid histroy... I really have done a 360 in the care I first got - vs - now... and I never felt better.. Why did I have to go to the extreme of learning so much all alone ( years) more importantly so ill too??? - when these doctors went to school to practice exactly what I learned?
If I wouldn't have had a support at home both financially and family help... I know for sure I never would have had the time to learn so much as I did and now being so actively global with many doctors and specialists that practice the information I learned alone. I'd probably still be sick truthfully and that makes me angry.
Seriously - it feels like its another world at times with how many differences there are in treatment - and all of them being practiced but so seperately and with so much controversy. Us poor patients - if just trusting and not learning some themselves- can really wind up miserable and that to me is very sad.
and that's thyroid talking only.... can you imagine all the other thing that are just like this stuff? very overwhelming for me to even think.
Hi thanks for the reply, i was on 225 micrograms every day, since i had my TT nearly four yrs ago, I was on 150 after the TT this was fine for 12months then they atrted to increase ie each time i want for my check up, this time last year it was as much as 275mcg they decreased it to 250 in June 09 the again in Dec 09.
If i didn't get the point before, I definitely got it now! LOL....I will surely stay on top of it.
Thanks
Thanks
I think you get our point by now on the Free T3 testing............!
That really is the most important test in managing your thyroid on meds. It tells the available amount of active T3 floating around in you blood for use by all the cells in your body. You wouldn't plan a long trip with your autos fuel gauge not working right? You could just guess and gas up along the way without knowing how much you have. Peole do that, even though its not the best idea.
Doctors as well as other higher professions are not always right. Its just another job with very expensive and lengthy education. This does not guarantee common sense at all. And common sense is not very common. I'm no doctor, but have worked in several science fields and the higher education degree of co-workers does not necessarily correlate with having correct assumptions, opinions ect. People are people, some are smarter than others, doctors too.
Its a touchy subject when advising a doctor what to do based on what you know. Its natural human instinct for them to take this as an insult if they have the big ego too. If they flat out refuse, their not up to modern standards. Some schools are up to modern standards either- scary fact.
I always doctors are like car mechanics, some are right, some are wrong. Its hard to find a good one, but there out there. If you cant assume there all right. I did just that in the beginning, and I had bad thyroid symptoms for years.
That really is the most important test in managing your thyroid on meds. It tells the available amount of active T3 floating around in you blood for use by all the cells in your body. You wouldn't plan a long trip with your autos fuel gauge not working right? You could just guess and gas up along the way without knowing how much you have. Peole do that, even though its not the best idea.
Doctors as well as other higher professions are not always right. Its just another job with very expensive and lengthy education. This does not guarantee common sense at all. And common sense is not very common. I'm no doctor, but have worked in several science fields and the higher education degree of co-workers does not necessarily correlate with having correct assumptions, opinions ect. People are people, some are smarter than others, doctors too.
Its a touchy subject when advising a doctor what to do based on what you know. Its natural human instinct for them to take this as an insult if they have the big ego too. If they flat out refuse, their not up to modern standards. Some schools are up to modern standards either- scary fact.
I always doctors are like car mechanics, some are right, some are wrong. Its hard to find a good one, but there out there. If you cant assume there all right. I did just that in the beginning, and I had bad thyroid symptoms for years.
That is a mystery. After a T/T, you should have very little thyroid tissue (it's often difficult to impossible to remove every last cell). However, since your thyroid cancer has returned, we have to assume that there is still some leftover thyroid tissue. If you're having RAI on the 15th, you've been off meds for four or five weeks??? If so, I'd think you should be barely able to get out of bed by now. They haven't given you Cytomel in the interim to tide you over, have they? Since you're not feeling hypo, I'd think the remaining tissue must be producing thyroid hormones. What was your dose of levo before going off in preparation for RAI?
Very interesting...
Very interesting...
Thank You. I am doing my darnest to learn all that is out there to learn about being 'thyroidless" and what comes along with. I always say, doctors are people too and they do not know everything.
I have found this subject extrememly interesting, i to had a TT nearly four yrs ago (thyroid Cancer).
I have been going for my appointments with the Oncologist every 3-6 months and having bloods done.
All i have ever been told is that all the results are fine.
I have recently been told that my Thyrcanc has returned.
I have asked the onco how could this happen if i have had these bloods and they have all been normal.
TSH
TG
T3
T4
I think here in the UK things are very lax where the thyroid is concerned.
I look and see many of you talking about being hypo, if i am honest i don't think i know what it is i have been on le-thyroxine for the past 4yrs, and felt fine.
I have now been off all meds as i am due to have RAI on the 15th, so i am following the LID and i have to say, i feel better being off all the meds (so much so that i have been spring cleaing everywhere over the last few days).
So i would like to know if possible how can i feel so much better and full of energy being off all the meds?
I have been going for my appointments with the Oncologist every 3-6 months and having bloods done.
All i have ever been told is that all the results are fine.
I have recently been told that my Thyrcanc has returned.
I have asked the onco how could this happen if i have had these bloods and they have all been normal.
TSH
TG
T3
T4
I think here in the UK things are very lax where the thyroid is concerned.
I look and see many of you talking about being hypo, if i am honest i don't think i know what it is i have been on le-thyroxine for the past 4yrs, and felt fine.
I have now been off all meds as i am due to have RAI on the 15th, so i am following the LID and i have to say, i feel better being off all the meds (so much so that i have been spring cleaing everywhere over the last few days).
So i would like to know if possible how can i feel so much better and full of energy being off all the meds?
I totally agree with you goolarra when you say to establish your own person history. I had a TT in June and was a little blindsided when I didn't feel great after a few weeks. I was lucky to have a dr who did all the correct tests but I kept track of everything. I kept a journal that noted what my levels were on what dates, what meds I was taking, how I was feeling (daily), how much sleep I was getting etc. I shared that info with my dr during every visit and every phone call. As a matter of fact my dr now asks me for my sheet of information that I bring to every appointment and he keeps it in his file. In the beginning my dr was doing blood work sooner rather than later to try to catch trends before they became an issue. I firmly believe it was this almost anal attention to detail that helped me feel almost normal by 3-4 months after the surgery. From that point on it really was just fine-tuning and I've felt wonderful for months.
It or the absence of it can effect just about everything in your body if these hormone levels are not kept in the proper balance for your bodies needs. There are many people running around out there who think they have arthritus, fibromyalgia, depression, heart issues, etc. who really have low available thyroid hormone for whatever reason, and the longer they are kept this way the sicker they get! They are often sent to many specialist who prescribe many drugs, yet they never really get better. This is because the doctors are missing the root of the problem! Even when they do think to look at thyroid, they often miss it due to wrong tests and broad ranges. It's such a shame and it really needs to change! Education is the key for living without this gland. Learn all you can -live, eat, and drink it until you have a strong grasp on what it takes to get well and stay well! Never settle for less then your best, and don't stop until you get there again! It takes some time to figure it all out, however I already see you moving in that direction. Thyroid issues are complicated, but not impossible to figure out, just be determined and read! read! read!
Again, thank you for the helpful info. I had no idea how important the "thyroid gland" was until i didn't have one anymore.
Stella's post brought to mind one other point. As she said, why just test FT3 when the patient doesn't feel well. I agree, some of the most valuable information is knowing your levels when you do feel well...these become your goals.
It's so important to establish your own personal history...all labs, all tests. I have a spreadsheet that I enter all my labwork into. You can compare yourself to the reference ranges from here to eternity, but nothing is as good as comparing yourself to yourself. If you have this history, when something goes awry, you can look back and see your own personal changes, and that's what's so important. Have the proper tests and repeat them over and over. Jot down meds between the previous labwork and current and any symptoms you have.
I don't know how many times we hear from people who have experienced a sudden change in, say, how their meds work for them. They've never had FT3 tests. Often, the doctor still doesn't want to test FT3. They beg, he finally does, Sometimes that's enough to figure out what's going on. But, I don't know how many times I wish there was history to compare that to. With the history, many problems become much more obvious.
We're all in this disease for life...we have to manage it on a long-term basis. The sooner we establish our own personal ranges, the easier it is going to be to manage the problems that surface down the road.
It's so important to establish your own personal history...all labs, all tests. I have a spreadsheet that I enter all my labwork into. You can compare yourself to the reference ranges from here to eternity, but nothing is as good as comparing yourself to yourself. If you have this history, when something goes awry, you can look back and see your own personal changes, and that's what's so important. Have the proper tests and repeat them over and over. Jot down meds between the previous labwork and current and any symptoms you have.
I don't know how many times we hear from people who have experienced a sudden change in, say, how their meds work for them. They've never had FT3 tests. Often, the doctor still doesn't want to test FT3. They beg, he finally does, Sometimes that's enough to figure out what's going on. But, I don't know how many times I wish there was history to compare that to. With the history, many problems become much more obvious.
We're all in this disease for life...we have to manage it on a long-term basis. The sooner we establish our own personal ranges, the easier it is going to be to manage the problems that surface down the road.
Most endo.s have issue's with the free t3 testing but will test the freet4. But it is the available (free t3) that the body must have! So just assuming that the synthetic t4 (the storage hormone) is converting well to the active t3 hormone , but never tracking it for sure, is what keeps so many people sick with hypothyroid symptoms. The freet3 is the key so you will need to find someone out there eventually to track this if you continue to feel poorly. My daughter's pediatric endo. never would, so I got a regular doctor to and then brought her endo. the results! This didn't go over too well, however I was right. We now see a doctor that my compounding pharmacist recommended. A doctor who understands thyroid very well and the importance of keeping an adequate t3 level. If this can be achieved with only synthetic t4 then great, but if not, she will work with us to get that t3 to a higher level within normal range where my daughter can be symptom free or EUTHYROID! These better doctors are out there and as time goes by you may have to find just a regular MD or DO if you can't find an endo. who gets it! Many endo.s prefer to deal with diabetes then thyroid any way and are not progressive (closed minded) with thyroid issues! They feel that "one shoe fits all" and the reality is that their patients are often left to suffer from inadequate thyroid replacement. Unfortunatly, most endo.'s seem to operate within these same perameters of their closed in box! A recommendation from a compounding pharmacist in your area is a good way to find a new doctor if needed now or in the future. Good luck to you!
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