I'll be interested to see the replies that you get because I've had 2 different doctors tell me the same exact thing and we had our TT on the same day.
Okay, I've finished screaming now...the frustration! I think it's easier to go into your doctors office and request a full body MRI and get it than to get a simple, cheap blood test (mine costs me $10.14 after my insurance "discount") that provides so much information.
Total T4, T3 uptake and T4 Calc (FTI) are a waste of money and good blood. They're obsolete, and they've been replaced by FT3 and FT4. If she doesn't think T3 is important, why is she ordering T3 uptake (FT3's precursor)?
Your FT3 correlates best with symptoms. If you're not converting properly, you want to know that. It's really important to develop a history...what's your FT3 doing when your FT4 is at this level versus that level. If your FT3 isn't at the right level for you, your FT4 can be "perfect", and you are still not going to feel well.
I'm sure you'll hear from some other screamers!
Totally agree with goolarra. You're the customer. It's your money. Insist on FT3. Don't take no for an answer.
But no one is addressing the fact that our doctors didn't say they WOULDN"T do it..their opinion is in cases like ours it is just too soon to even know what is going on as we are just 2months without a thyroid. Now, if it wasn't in their plan at all or even within the next couple of months..that would be one thing, but obviously they do plan on testing it when we are a bit farther along. Did either of you have a TT? I am new to this and I don't know much, but I think you at least have to give the doctor a chance. If my endo said flat out NO he doesn't test that, etc..that would be one thing. I would be looking for a new Dr. I just think it would be a bit premature to ditch him now, as he said he would be testing that in the near future..just not at this stage.
But, they have said they wouldn't do it now. No, neither gimel (sorry to speak for you here, gim) nor I have had a TT. Sorry, froggy, I can't remember what your doctor is testing. But, I do know that blsdnsvd's doctor is not only refusing (at the moment) to order FT3, but is ordering obsolete tests...TT4, T3 uptake, FTI. These tests are a waste of time, money and blood. Do I think this is indicative of the doctor's expertise in dealing with thyroid...yes, and it does not bode well. As I said to blsdnsvd (please, something pronouncible!), if her doctor doesn't think T3 is important, why is she ordering the obsolete tests for it (T3 uptake) instead of FT3?
So what you are saying is that you feel they should run those tests this soon? Believe me, I am not doubting you, as I know that you do know your "stuff" here...but if they are inexpensive tests, etc..why are the MAJORITY of endo's and pcp's not concerned about it...at least with us at the moment? Maybe it's different when you don't have your thyroid anymore and it's only been 2 months for us and NOTHING is regulated yet? I don't know. My endo (along with the other 7 in the practice because I called and asked) said for patients who just had TT..in the beginning they test T4 Total, T3 Uptake and TSH and also VitB12/Folate Panel, Comprehensive Metabolic Panel, Calcium, Albumin, Phosphorus and VitD. If the patient is having problems or symptoms then that's when they would need further/different testing done.
I'm going to guess that Blsdnsvd screenname means "BlessedandSaved" ...from one Christian to another... :-)
Probably the reason for running some of those obsolete and unhelpful tests is the same reason the MAJORITY are still using the old reference ranges for TSH, over 7 years after the AACE recommended significantly changing the range down to .3 - 3.0. (You might notice that the range listed for blsdnsvd is the old range.) That's the way they have always done it and they see no reason to change, unless pushed by a patient that has done some reading on the subject. Then they frequently get defensive and find all kinds of excuses.
Goolarra is right. If they don't really need to know about T3 until later in the process, then why are they running T3 uptake at the beginning? Totally inconsistent.
I understand, but it doesn't help me when I'm trying to spell it! Vowels, please! I'm just teasing here...just trying on my poor old memory and fingers! LOL
I know you've heard the same thing I've been saying from people who have had T/T. I hope they chime in on this. The MAJORITY of doctors also think TSH is sacred...old habits die hard.
As I've said TT3 and T3 uptake are obsolete. It's a bit like saying: how many pairs of pants do I have in my closet (TT3 and TT4)? Okay, how many fit me (FT3 and FT4)? If you have ten pairs, but only two fit you, well, the other eight aren't doing you a whole lot of good, are they. Same with "totals" vs."frees". The tests a doctor orders say a lot about his expertise in thyroid. Why haven't your doctors caught up with the latest? Never picked up a medical journal since med school? Sorry, but most of us who have been around here for a while react pretty quickly to lame doctors. We've all had them, heard from many, many others who have, too. Theres more incompetance out there than you can imagine.
To get the small and irrelevant stuff out of the way...Yes, "froggy" (Lynda) is correct, my screename stands for blessed and saved (abbreviated) of course and i don't think that i couldve gotten any closer to the unabbreviated spelling (vowels or not)....
I do understand that you are very well "self" educated on this topic based on experience, however, whether or not the doc's don't have it all together as far as "modern" technology....could it be that they feel as if they are getting the results that they need by running the tests that they run.? My endo did specify that she only run's FT3 when the patient isn't feeling well and the other tests are resulted in "normal"...which does make sense to me (but what do i know).
As Lynda mentioned, we are both in transition and it's only been 2 1/2 months that weve had surgery. Everyone recover's differently. Although I do have hypo symptoms, that is because my TSH isn't where it should be as of yet...It is dropping (slowing but surely) based on the previous labs but not where it should be. I mentioned to my endo also about takin (cytomel) along w/ the T4 med and she suggested that "cytomel" are for patients who are not converting T4 into T3 and as far as my case goes, i'm not one of those patients (at this moment).
I am too' learning about the entire "thyroid" process as far as not having one..i do appreciated your advise and suggestions, which is the reason that i did mention it to my doctor.
Our main concer is this: During the transition from low thyroid to normal thyroid...what can be done to help with the symptoms of being hypo...especially the "extreme fatique"????
Thanks for responding
Barbara (that will be easier to pronounce..LOL)
You said "I do understand that you are very well "self" educated on this topic based on experience, however, whether or not the doc's don't have it all together as far as "modern" technology....could it be that they feel as if they are getting the results that they need by running the tests that they run.? My endo did specify that she only run's FT3 when the patient isn't feeling well and the other tests are resulted in "normal"...which does make sense to me (but what do i know)."
Why would any good doctor think they can get the results they need by running outdated tests? Technology has proven that running FT3 is much more reliable than TT3 and T3 Uptake -- they are running 2 obsolete tests, when they could be running only one up to date test.
I also see no point in waiting until later to run the FT3; if they would start running it now, there would be a record, so that if/when you don't feel well later on, there will be something to compare with. In addition, yes, cytomel IS for those who don't convert T4 to T3, but how can your doctor even make the determination that you aren't one of those people, when she's not running FT3??
My former pcp refused to run FT3 also, but when I managed to get it done on my own, it was discovered that *I* am one of those who doesn't convert well, but if I'd kept listening to my doctor, I'd still be sick. Just because a person has the designation of being a doctor, doesn't mean they know all they need to know or that they have the ability to make you well.
As your levels get better, you should get back some energy. I couldn't find anything to help with my fatigue until my FT3 was brought up higher and I'm even on B12 shots every 2 weeks for pernicious anemia.
Hey girls! Just wanted to jump in here and let you know that the gimel and goolarra are telling you the truth here. My daughter is nine and born without a thyroid gland. I have had to learn many things the hard way about wrong medical advice and closed minded endo.'s, "normal ranges", blamming symptoms on everything but..., wrong testing, ignoring available (FREE) T3 and freet4, over dependance and too high TSH, and the list goes on and on and on. It is normal to want to trust these specialist, after all they are the "specialist", yet many are misguided and closed minded and influenced by outdated medical journals. Throw in the lies and deceit and medical propaganda heaped upon them from big pharma who influence the medical schools where they are taught and pedal perks to their offices, so naturally it all becomes an issue of ego instead of the patient, so proceed with caution! Educate yourself and seek out other professionals if needed and continue to stay in the loop with others who have walked before you.Don't put your head in the sand and leave it all up to these often misguided individuals who are suppose to know, as this can be a receipe for disaster. My compounding pharmacist has been a great friend to me in times of doubt when dealing with the opinions of these doctors and laboratory reference ranges. A wonderful book that he recommended to me was "Overcoming Thyroid Disorders" by Dr. David Brownstein. It is around $18.00 on Amazon.com. It is an easy read and spells things out very clearly. I hope I've been of some help here. I would be glad to share any of our experience with you thus far with living life without a thyroid gland if you have any questions. May God watch over you both in this thyroidless journey, and may He keep you on the correct path to wellness! God bless!
"My endo did specify that she only run's FT3 when the patient isn't feeling well and the other tests are resulted in "normal"...which does make sense to me (but what do i know)."
Only problem being that if FT3 is out of whack, TSH will most likely not be "normal", and FT4 can be stellar, and you still won't feel well.
You have hypo symptoms because your FT3 and FT4 are too low, not because your TSH is too high (yes, when the frees go up, the TSH should come down...should is the operative word here). TSH is nothing but a messenger from the pituitary to the thyroid to tell it to produce more hormones. THS causes no symptoms in and of itself. Cytomel is definitely for people who don't convert well, but some people who do convert well still feel better when a bit is added to their meds. Our healthy thyroids (okay, so none of us have THOSE anymore) produced both T3 and T4. We get most of it from conversion, but the thyroid produces both.
Thanks for the name! Much easier to spell! Best of luck.
hi i also agree totally with goolarra and gimm i didn t feel well until my ft3 was high but then it went too high because i was over medicated. the weight came off when my ft3 was higher and i felt human again. my ft4 was in the upper med range also. if my dr forgets to order ft3 i write it in..
Thank you for all replies..as I'm in the same boat as Barbara. ...........Lynda xo
I truly appreciate all of your comments and advice and i will definitely "not" settle, for whatever my endo says if it doesn't agree with my health. If my symptoms remain or get any worse,I will surely be on top of it.
" My endo did specify that she only run's FT3 when the patient isn't feeling well and the other tests are resulted in "normal"...which does make sense to me (but what do i know). "
this makes sense??? It doesn't to me... - Think about this... " I only run it when they don't feel good? " - that's insane.... Why would a doctor not want to know where the superior direct FT3 level is at - prior to the patient getting sick.?? - that's wrong.
Yes - every one recovers differently - but there is no denying recovery would be faster if the levels were monitored properly.
In defense of the doctor and I hate to be the devil's advocant... but in their learning the FTI - TSH/3rd and the total
more later.. I just got a call.. LOL
The Point of the story is this: I am not refusing tests or treatment...the fact is: the endo won't test the Free T3...and it's very easy to say, "i'm gonna switch doc's because she won't run the tests...but who is to say that the next endo does not base treatment in the same method.
I can't answer the questions that are meant for the doc's to answer...why are they not re-trained in regard to "modern technology" in the field of thyroid issue...I don't know!
I even attempted to leave a post in the forum for Dr. Lupo....it's like pulling teeth just trying to post, so that did not happen. I would like to hear his opinion on this topic as well.
I would love to hear "more"...................
I've become such a pain in my endo's butt that he now will do what I ask just to shut me up! I asked him point blank why he doesn't test my free T3 and yet puts me on Cytomel without decreasing my Synthroid. He gave me some song and dance, blah blah blah, not necessary, blah blah blah. I said I WANT IT! He said okay. Going Monday for Free T3 and Free T4. He's a bonehead.
No one should have to fight with their doctor to get what they need. This is where I found my new endo. I had decided not to fight with my old endo. I needed to concentrate on getting better and getting upset by my endo was just plain bad for my health.
Whenever you schedule with a new endo, call the office and ask to speak to a nurse. Ask the nurse, "Does your doctor treat thyroid based on both set of frees and symptoms or based on TSH?" If the answer is TSH, a pituitary hormone, not an active thyroid hormone, don't go to that endo.
Hey girl- nice to see you again! We've missed you!
People who are not experienced or knowledgable in the "thyroid" field will definitely not know to ask that question. In the event that i do make a change, that will be my first question.
What if the free T4 is tested and the Free T3 is not????
The sad fact is that many doctors don't know to ask that question. We as patients have to really research our disease, because too many docs don't know how to diagnose/treat thyroid disease.
If the doc doesn't believe in testing/treating FT3, then that doc will only treat half of your disease. My last endo was like that, which is why I left her. Go to the site I showed you and start calling the docs in your area. I did see a doc on that site that doesn't believe in testing FT3. I had taken my mom to her. I alerted the site owner, so the site isn't perfect. I did find a wonderful doc for me and my aunt on there, so it's the best list I've found so far.