Who needs a very suppressed TSH for adequate frees?

[LazyMoose]

Seems to me a few of you need TSH below the range in order get Frees in the mid to upper range to feel good.

Funny thing about Erfa dessicated, it suppresses my TSH even more than old Armour (further than my endo likes). After 3 1/2 months, my FT4 is on the bottom, FT3 only in mid range with a TSH of .6 {yes (.) 6 } Still have sight hypo symptoms, muscles sore, tired but sleep like a rock - the usual signs.  Still room for improvement. So I'm just gathering some facts from others here before a visit to a supposedly non-TSH Endo. If this is how Erfa works in me, I need a endo that 'gets it'.

[Barb135]

I totally agree with what others are saying about the connection between the FT's and TSH.  My latest TSH was < 0.01; dropped down there almost as soon as I was put on thyroid med. I've had doctors who insisted on decreasing my med, even though I had hypo symptoms, simply because my TSH was low.

At first, my endo even questioned it being that low, but he no longer even looks at that.  His comment at my last visit was "It's very common for TSH to be suppressed when one is on a T3 med".  Even with my TSH at < 0.01, I was given an increase in med because my FT's were lower than before and I had hypo symptoms.

Since you, LM, are in Minnesota, I assume you are talking about University of Minnesota professors?  I didn't realize you were close enough to U of M to get to the professors there, but if you can get a chance to talk to one, that would be totally awesome.  Love to be a fly on the wall for that.  I think there are enough of us here on the forum who can attest to the fact that TSH does NOT correlate well with the actual hormone levels.

[stella5349]

LM - with you in Michigan I have found a terrific endo treating another forum member here named Kipland. She is on ERFA thyroid with this endo and is doing wonderful things for her after years of her struggle. I am going to send this link ( post) to her to get back to you privately and help you make an appointment with her.

[LazyMoose]

All of you are so lucky to have found these Drs. Just imagine if you wanted to move?

This is why I started the other post about the need for an updated 'good' thyroid Dr list. The one on About T is outdated and incorrect.  Sal I am basically commenting on how it is in the states, I have no idea if there are other lists for other countries - I assume not , as I have not seen any.

[laura1967]

My recent TSH was a 0.02, Free T4- 1.2, Free T3- 394.  I am on both T4 med and T3 med. Yes....T3 meds supress the TSH to make us look hyper.
Thank God my Dr treats by the Free's only. I use to have a Dr who only treated by TSH and kept me so sick.

[LazyMoose]

"For a person who has been on thyroid meds TSH often becomes less useful over time.  I think that something about being medicated gradually destroys the link between TSH and FT3/FT4 levels.....  I would love to see research into this. "

- There needs to be a lot more research in this area. If only we knew how to get the word out to the medical community.

[Super_sally888]

My TSh has been dropping over the years.... on FT4 meds and now on combo Ft3/FT4 meds.  It is < 0.005.  This is regardless of where my FT3 and FT4 levels are: low or high.  

My endo has asked me to stop testing TSH.  Says it's a waste of money.  We only test FT3 and FT4 now.

I commented to him the other day that i'd be in trouble with another endo who didn't know about my TSH thing.  He just laughed and said "No, I'll be in trouble".  But bottom line is he understands that my TSH is pretty useless now.

I believe that TSH is a reasonable screening tool in the population, and if a person is not treated with thyroid meds.  However, if TSH is apparently normal and a person has symptoms of hyper or hypo, then FT3 and FT4 should be checked.

For a person who has been on thyroid meds TSH often becomes less useful over time.  I think that something about being medicated gradually destroys the link between TSH and FT3/FT4 levels.....  I would love to see research into this.

[LazyMoose]

I have thought of trying to discuss this "TSH is the gold standard" with a U of M medical professor. They instruct that TSH is the standard at this med school. So most of the younger docs in Minnesota go by TSH.  But.......my experience with most PHD's is they only talk to other PHD's !

[gimel]

Yes, it is ridiculous.  Why should a pituitary signal that doesn't even correlate well with FT3 and FT4, be the standard rather than the actual thyroid hormone levels themselves?   Since the reference ranges for FT3 and FT4 are also supposedly "normal", why not accept anything within those ranges as required to relieve symptoms as normal and ignore the TSH?  The logic escapes me.

[LazyMoose]

Gimel, that was really low TSH for only a T4 med.

"Another huge fallacy is that TSH is supposed to correlate with levels of T4 and T3.  Wrong."

- This is what I have now proved myself. But my endo will not take the extra two minutes to understand what I have proved. At this dose of Erfa my TSH is lowest ever, even though my frees are ALSO lower in comparison to comfortable, higher free levels in the past. So it correlates somewhat but not enough to really on. The correlation 'ratio' can vary with med brands and types.

I think Efra works good, I just need to make it work better with a higher dose.

Just hope this TSH misconception is better understood in the future. Its ridiculous.

[gimel]

While on a T4 only med, my TSH was around .05 for over 25 years and I still had lingering hypo symptoms until I found out about the importance of FT3 and got my doctor to prescribe a T4/T3 combo med.  I kind of liked the position of one doctor I read about that said that as long as there was any measurable amount of TSH,  that meant that the Pituitary was still signaling for a small amount of thyroid hormone from the thyroid glands.  

I don't know how the medical community decided that below range was so bad.  After all, the range was established to cover only 95% of the patient population.  They made an assumption that about 2.5% were hypo and I guess they also assumed about 2.5% were hyper.  Eight years ago they acknowledged the error by changing the range.  

Another huge fallacy is that TSH is supposed to correlate with levels of T4 and T3.  Wrong.  I have yet to find or be directed to a valid study that supports this.  Since TSH has no active role in metabolism, etc. why do they think a low TSH  is a big concern if at the same time  FT3 and FT4 levels are within their so-called "normal" limits?