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trust these specialist, after all they are the "specialist", yet many are misguided and closed minded and influenced by outdated medical journals.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!
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Why would any good doctor think they can get the results they need by running outdated tests?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.
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)
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.
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'm going to guess that Blsdnsvd screenname means "BlessedandSaved" ...from one Christian to another... :-)