Hypo Question

[MarineSSgt]

I was talking with my doctor who is an internal med doctor and I mentioned some stuff that other people had suggested that I ask.  one of the questions that they suggested I ask was to ask for a Free T3 test. But when I did this he told me that it was stupid to get that tested because no one uses t3 to treat or diagnose a thyroid problem anymore.  My TSH level as this past time was a 4.82 and my T4 was a .63 and my PA ab was a 111.  I just had a thyroid Ultrasound today because he thinks I may have nodules on the right side of my thyroid.  During the ultrasound she did my ultrasound of the left side of my thyroid in less than five minutes but spent almost ten minutes on my right. I am guessing she probabbly found something but she wasnt able to tell me.  But my question is ...is my doctor wrong by telling me that I do not need my Free T3 tested?  He also said that if I do have nodules on my thyroid that I would most likely have surgery to take my thyroid out.  Is that what happens when you have nodules or what not on your thyroid..they just take it out?  I am a 29 year old male also if this helps...any ideas would be greatly appriciated.

[stella5349]

I spent over 4 years ill and was being treated without the FT3 labs

Every since I demanded the testing.... learned how to read the lab with the FT4 ratios - I have my life back - EVEN better than before I got sick.

"Peeshaaaa"-- on your internal med doctors spanking... The FT3 and FT4 ratios saved my life.

[Barb135]

gimel and goolarra have pretty much done all the follow up that I would have said.  The only way you can be sure your T3 is covered is to 'ASSUME' (and we all know what THAT does......lol) that you will convert properly OR he's giving you a T4/T3 med, but since you mentioned synthroid I'm doubting that's the case ---- so that leaves the assumption that you will convert properly.........

Hate to say this, but that's what my FORMER pcp did to me - refused to run FT3 and I thought he was going to kill me by lowering my synthroid so I finally took matters into my own hands and got the tests I needed by a lab that didn't require a doctor's order; it turned out I *had* a conversion problem.  Also turned out that my ENT sent me to an endo who DOES go by FT3, FT4 more than TSH ----- much better.......

Bottom line is: go with your gut feeling.  If you don't think you are getting the tests and care you should be getting, you probably aren't ------- your options are to stand up to your current doctor to get what you need or find another........whichever makes you comfortable --------------

Oh goolarra ---------- do hens REALLY have teeth??           LOL

[goolarra]

Yes, Hashi's is an autoimmune disease.  I'm sorry, I'm not familiar with PAab.  The reference ranges for TPOab and TGab are usually somewhere in the vicinity of <40.  Actually numbers are a bit irrelevant since they can vary wildly even intraday.  It's basically a positive/negative situation.  Any elevation in TPOab and/or TGab can indicate Hashi's.

[MarineSSgt]

You mention Autoimmune disease...are you speaking of Hashi's?  I had a PA ab which was 111 and the ref range was 0-34 according to the sheet I got from the doctor.  Is this a really bad number and is it a lot different from the TPOab and TGab?

[goolarra]

If your doctor assumes that the meds he is going to put you on "covers your T3", then he is doing one of two things. #1 - He is putting you on T4-only meds and assuming that your body will convert T4 to T3 properly (great if it does, not so great if it doesn't).  #2 - He is putting you on a combo T3/T4 drug.  I doubt #2, but if that were the case, then it is absolutely essential to monitor FT3 levels.  T3 is much more volatile than T4 and can get you into trouble that much faster.

While you're at it then with your primary care doctor, ask for TPOab and TGab.  These are the two antibodies implicated in Hashi's.  Elevated levels of either or both can indicate autoimmune disease.

[MarineSSgt]

I hear ya gimel...I just emailed my primary care doctor to see if she would order the blood work instead of my internal med doctor because he seems kind of daft to me.  Also I have not been diagnosed with Hashi's as of yet just they know I have some sort of hypo problem.  

[gimel]

FT3 is the most important.  Medicating without being sure of its level is like charging a sniper's nest when you really don't know where it is.  Why not find out and be sure rather than assuming that if T4 is okay then T3 is also?

[MarineSSgt]

I understand what you are saying barb but my doctor also told me that the medication he is going to put me on covers my t3 if there was a problem so he sees no need to test me for the t3.  I felt bullied by him becuase he was so quick to tell me I was wrong in asking for a FT3 test.  But I dont want to be on just Synthroid if it isnt going to treat all my symptoms.  I fell horrible right now.  Lack of energy..headache all the time..at night my feet and hands feel like they are going to explode and also my spine feels like its going to rip out of my back...kind of like a big pressure in my spine. But when I wake up in the morning I feel ok but my headach is still there and my fatigue is still there...like I never went to bed!  

[goolarra]

T3 is the most (only) biologically active thyroid hormone.  T4 is a "storage" form of the hormones, but cannot be used by cells until it is converted to T3.  I think FT3 is very important.  I know it's like pulling hen's teeth to get doctors to order it.  Why?  It's a $10 test, it tells a lot.  I think it's easier to get an MRI at times!  If your body is not converting T4 to T3 properly, you will remain hypo no matter how much T4 you dump into your system.

Do you have Hashi's?  Most of us with Hashi's have nodules.  It doesn't necessarily mean your thyroid needs to be removed.  The ultrasound will offer a lot of information about the nodules.  If they are "consistent with Hashi's", they may just be watched annually for changes.  If the US shows any suspicious nodules, then a biopsy may be done to further explore the suspicious nodule(s).  I've read that the thyroid is very susceptible to nodules (even in people without thyroid disease) and they come and go on a regular basis.  The thyroid is seldom removed except in the case of cancer, a goiter that is impinging on swallowing and/or breathing, or uncontrollable Grave's disease.  

[Barb135]

Like gimel said - your doctor is out of date!!  I, personally, am on a T3 med, along with my T4 med........EVERY time I have blood work, I am tested for FT3, FT4, TSH; so, yes, the better doctors not only prescribe T3 med, but also keep close track of FT3 levels in order to make sure they are dosing properly.....

[gimel]

Your doctor is out of date.  I don't know if you can change her, or you will have to change doctors, if that is possible.  I think that this  email that I sent to the Amer. Thyroid  Assn. will help explain why you are hypo and why you need to be treated for your symptoms by testing and adjusting FT3 and FT4 levels with whatever meds are required to alleviate those symptoms, without being constrained by TSH.  





After having gone through years of not being treated for hypothyroidism, because my TSH was 4.97 and thus "normal", I was very pleased to note that the AACE had finally recognized that the range was incorrectly determined.  After removing some suspect hypo patients' data, and recalculating the range, they recommended  it be lowered and narrowed to .3-3.0.  Six years after this recommendation, why is it that most labs and doctors still do not recognize the change and still use the old range?  Since doctors also over-rely on TSH as the gold standard for thyroid testing, multitudes of hypo patients are still being told they are "normal" and do not get treated.  Is the ATA doing anything to encourage the medical community to change this practice?   If so, why is it taking so long?

My second concern is that doctors predominantly rely on TSH in determining a patient's thyroid status.  Why is this, since TSH is a pituitary hormone that is affected by so many variables, including even the time of day when tested?  Why not promote more widespread use of the actual thyroid hormones that are biologically active (FT3 and FT4) and that largely regulate metabolism and many other body functions?  From studies I have seen and much personal experience, TSH does not even correlate very well at all  with  hypo symptoms.  The test that has been shown to correlate best with hypo symptoms is free T3.  Yet there are very few doctors that order a FT3 test as a matter of course, and some that refuse to order one at all.

When FT3 and FT4 are tested,  the ranges are so broad that patients with overt hypo symptoms will usually still fall in the lower end of the current range.   As a result they are also told they are "normal" and receive no treatment.  Why haven"t the reference ranges for FT3 and FT4 been corrected like TSH, to exclude suspect hypo patients?  If this were done, these ranges would likewise be raised and narrowed,  comparable to the new range for TSH.  I'm sure that some would say that the range is just a reference range, that as you approach the lower end of the range, that the probability of being hypo goes up and that in those cases, doctors look further to determine if medication is advisable.  I agree that this should be the case but I assure you it isn't. Labs and doctors interpret results within the reference range as "normal" and don't want to go any further.   As a result of all this the above  misunderstanding and misapplication, millions of patients go untreated and remain miserable with their hypo symptoms.

Is the ATA doing anything to raise the awareness  of these problems among the medical community so that we hypo patients can look forward to some positive changes?  If you are not, then I cannot imagine any other organization that could do the work necessary to coordinate changing the awful mess that exists in the area of diagnosis and treatment of thyroid patients. Your response will be greatly appreciated.