When TSH simply will NOT go down

[goolarra]

For those of us helping others understand their labs - some information.

When I was diagnosed hypo, my TSH was 67.  Within two months, that had gone "down" to 44.  I felt great; all my hypo symptoms had disappeared (and I had LOTS).  Problem was:  I have a congenital heart defect that makes me susceptible to SVT (tachycardia).  The levo had made that go wild.  So, I started taking a beta blocker to curb the SVT.

For the next ten months, my PCP had me increasing my levo regularly.  I was beginning to have hyper symptoms (on 69 mcg levo) and beginning to disagree with her assessment that I needed ever more levo.  I discovered this forum and decided I needed an endo.

First, he switched me to Levoxyl from generic (no dose change), then upped my dose to 75 mcg and upped my beta blocker to 50mg (from 25).  Next appointment, he wanted to go to 88.  I said NO, but I agreed to go to 81.5.  Within two weeks the SVT went wild again, I couldn't sleep at all, I lost a few lbs. (every cloud...), diarrhea (easier to deal with than to spell), on and off inability to sit still, etc.  He immediately backed me down to my previous dose of 75 mcg.

My last labs (after returning to 75):  TSH 22.8, FT3 1.8 (1.8-4.2), FT4 1.16 (0.6-2.0).  His conclusion is that I have "pituitary resistance to thyroid hormones".  I have developed a deficiency of the enzyme (5'-deiodinase) which converts T4 to T3 in the pituitary.  Because my pituitary can't convert the T4 to T3, it never stops it's cyclical bursts of TSH.  In my case, TSH has to be ignored.  My FT3 is in the lower end of the range, but some people are prefectly comfortable there, and apparently I'm one of them.  There's plenty of T4 available for conversion.  Sometimes my TSH, FT3 and FT4 all go up (at the same time), and sometimes they all go down together.  The combination of high TSH and HYPER symptoms is the clue to pituitary resistance.

I really feel they could have killed me with meds before they got my TSH into range.  My endo has finally agreed with what I've felt for months...I do NOT "need more thyroid" (to quote my PCP).

This just illustrates the importance of FT3 and FT4, and the need to downplay TSH, especially when it doesn't agree with what the thyroid hormones are doing or the symptoms.

[goolarra]

How do you feel?  Do you still have hypo symptoms?  If you are asymptomatic or have hypER symptoms with your TSH still high, it could indicate a pituitary issue.  

Are you taking thyroid meds?

[overcomingpain]

my question is what does it say when your freeT3 is high and your TSH is high..my free T4 is in the normal range?

TSH 5.2 (0.5 - 5)
free T3 6 (2.6 -5.7)
free T4 17 (12-22)

[goolarra]

I'm sure it probably has something to do with my anti-virus software.  I tried unblocking pop-ups, and I still just keep getting your profile page with no pics. .

[Smilerdeb]

Dont know why you cant see the pics...they are for everyone to see???
The one of me in the pink top is a shocker but it reminds me everyday of just how lucky I am and how far I have come since before the RAI days.

[goolarra]

I'm hoping all those antibodies are going to take care of my thyroid for free!  ;-)

For some reason, I can't get your pictures to come up (only the main one).

Glad to hear you're doing so well.  

[Smilerdeb]

Good posting goolarra.
I was born with a heart murmur (rhuematic fever too) and have 2 leaking valves (tricuspid and mitral ...trivial at present).
I was diagnosed with Graves and HyperT and had 3 bouts of atrial fibrilliation which caused me to take the emergency action of RAI in June last year. 2 days before RAI, it was found I had both lobes of the thyroid with Cancer so was given keyhole surgery to remove the thyroid three months after RAI.
Its been a long road but one well worth the walk....
I am now back at work fulltime and also studying a medical course online (12 months).
I havent looked back since RAI and dont think I could ever go through the Hyper/Graves thing again as it was he//.

I have 'before and after ' pics in my profile...I dont look too crash hot in the pink top but wanted people to see just how the Graves and Hyperthyroidism affected me.

To this day, I have never regretted RAI.

[goolarra]

My endo is good about symptoms, too, although I did report hyper symptoms, and he still increased until I finally had to back off to my previous does because the SVT had gone wild again.  I think both he and I learned not to do that again (I know I did).

Looking at my FT3, I think that the minute it gets off the floor (you can't get any lower in the range than I am), I start getting more SVT.  In retrospect, I also feel that my FT3 and FT4 was probably in the low end of the range all my life.  I had a weight problem even as a kid - back when we were not couch potatoes, but went out and actually ran around.  I've maintained my weight for the past year (something I have never done for a month in my adult life) and even drop a couple of pounds spontaneously once in a while.

I think you're right about the heart conditions and the hormone levels being too much of a coincidence.  Anyway, the body adapts in all kinds of ways.  I was born with the heart defect.  Did my body compensate for it in some way by suppressing the thyroid hormones in deference to the heart?  Just a theory...

I have Hashi's, so I know I'm chasing a moving target...with TGab >3000, my thyroid function has to be disappearing rapidly.  So, I'm pretty sure there will be more increases in the future, unless the thyroid has given up the ghost entirely.  I'm just glad I'm off the TSH merry-go-round.  Symptoms and the frees from now on fo me (and in that order).

[gimel]

I'm just going to speak to your thyroid isssues/questions.   The thyroid gland responds to a signal (TSH) from the pituitary and produces the thyroid hormone T4, which is stored in the body until needed.   As needed, T4 breaks down, for most people, to T3.  T3 is a thyroid hormone that circulates in blood almost completely bound (]99.5%) to carrier proteins. The main transport protein is thyroxine-binding globulin (TBG). However, only the free (unbound) portion of triiodothyronine (free T3) is believed to be responsible for the biological action that affects your metabolism and free T3 levels therefore correlate best with symptoms related to thyroid. It is also important to know that free T3 is 4 times as potent as free T4.

With that out of the way, let me say that you are hypothyroid and obviously need a change in medication.  Before this happens, you really need to be tested for free T3, for all the reasons above.  Then you need to get your doctor to medicate you based on your symptoms and your free T3 and free T4 levels.  Many Hashi's patients have reported they feel best when their free T3 is in the upper part of its range, with a good balance of free T4 and with TSH in the low end of its range.  Relief of symptoms, mainly by regulating free T3 is really the key.

[Crystal91479]

I am new to this whole thyroid thing. It *****. I don't know what Free T3 or T4 is, all I know is I am weak, gaining weight, and swollen!!!!! My TSH was 39.567 when I was diagnosed with Hashi's about a month ago, I went to the hospital last night and they took labs and my TSH was up to 45.5 (currently on 100mcg of Synthroid). My Free T4 was 1.3 which I guess is in a good range.........what should I be doing??

I also noticed that my eGfr MDRD level was low at 81.0 and my A/G was low at 1.212 and my Lithium was low at .2   Would any of these effect how I feel??

[Smilerdeb]

By the way....my Doc goes by my symptoms rather than my TSH.
He watches my Free's.
He always tells me to go with my 'gut' instinct.
I have had 2 small increases in the last 5 weeks because of TSH going over 4.0 agter the flu.
BUT I had hypo symtoms with my free's dropping a bit.
Had I had hyper symptoms, I wouldnt have increased...regardless of what my tsh was.

[Smilerdeb]

I too have a heart condition and suffer from bradycardia and tachycardia with SVT's.
I cant have my TSH under the 2.3 mark or I go absolutely haywire lol !
Good point...although it seems to be too much of a coincidence about the heart condition and the tsh being better off that fraction higher.
Maybe there is something to this goolarra.
Interesting reading.....

[stella5349]

always a pleasure to see you a part of a discussion Gimel.

Thanks

[gimel]

Very interesting discussion. It reminded me of something I intended to do -- post about the inter-relationship of of thyroid tests and why some are more important than others.  So here goes.

What are we really looking for?  I think the answer to that is relief of our many,  varied thyroid related symptoms. So if that is the end result we want, what measurable characteristic correlates best with these symptoms?  I think the best answer to that is metabolism, which can be measured as RMR or BMR.  I know that testing for metabolism has become more widely available and more accurate, but I haven't yet researched just how accurate it is.  A "normal" level of metabolism can be predicted based on height, weight and age, and is a good comparison for measured metabolism.  Metabolic rate is useful to know but cannot be directly "adjusted" by us, so it is mainly just useful information.  

So how do we manage metabolic rate and thereby patient symptoms?   Although there are a lot of contributing factors, it seems the most important factor is free T3, followed by free T4 levels.  These can now be accurately tested and adjusted pretty effectively by medication.  And of course we all know by now that free T3 is much more important than free T4, because it is 4 times as potent in its effect on metabolism.

In the real world, of course, we see TSH and total T4/T3 still being used as the main measures of thyroid conditions, for purposes of diagnosing and medicating patients.  This is further muddled by the confusion around a multitude of reference ranges being used.  My concern with this is that total T4/T3 tests are only an indication of  the levels of the more important, active components  (free T3 and free T4 ).  Also, TSH is a pituitary hormone signal to the thyroid to increase/decrease output of thyroid hormone, of which the predominant part is T4.    

My experience is that if you want to control a variable (patient symptoms), the most effective and accurate way is to measure/adjust whatever variable you have available to you, that has the best correlation to these symptoms.   In this case it would be free T3, followed by free T4.  Why would you ever want to use a variable (TSH) that does not directly affect metabolism, to try and alleviate thyroid related symptoms?  TSH does not affect metabolism.  It is just an indicator of T4/T3, as predicted  by the pituitary.  TSH is three steps removed from the end results you are trying to affect (symptoms),  and does not correlate very well at all.  

I know that with you two I am preaching to the choir, but I just wanted to throw these thoughts out to the general Forum members for review and correction or discussion. Maybe the end result can help make it clear to new members why we emphasize free T3/free T4 and downgrade TSH and total T3/T4 tests.

[goolarra]

I'm almost at the point where I'd like to see TSH thrown out...well, maybe that's a little harsh...but at least permanently bundled with FT3 and FT4.

How many people go untreated (I see this especially from UK members where FT3 and FT4 just isn't done if TSH is "normal") because of it?  And how many peolpe are mistreated just to whip their TSH into line?

My PCP knew almost zip about thyroid, but she did know enough to always order TSH, FT3 and FT4.  The upside is I got a good education in labs!

Why do we have to do this?  I think because lots of doctors haven't picked up a medical journal since med school.  They think they know, but they won't do any research.  It's tough for them these days...they have a much broader base of medical knowledge than we do, but if you have a chronic condition, with the internet and all (you no longer even have to be close to a medical library) you can be up to their speed or beyond and much more current in half an hour on your particular condition.

They need to start listening to us all the more, get off their pedestals, and see us as a partnership.  I don't expect them to know everything, but if I point that out to them, I also expect them to do some research and quit being offended.  It's terrible when people on the forum have ask how to get a referral from their PCP to an endo without offending the PCP.  (Grow up, PCPs!)

All that being said...your labs, Stella, would KILL me!  And vice versa.  We could be the poster children for the opposite ends of the hypo spectrum!

[stella5349]

Excellent point.  I totally agree with you and I am sorry you had to go through that before simple testing on your pitutiary indicated those issues.

In the course of my treatment - no one ever took the time to exam the pitutiary first before concluding anything until recently.

My doctor now decided to run pitutiary tests as precaution and it has come back with no issues, but still - making sure - like she put it- is best.

Personally- since my testing - the TSH - even in my case with not having any issues with the pitutiary - has been eliminated. I just happen to be "one" that does great on a way lower end of the TSH scale and  needs monitoring of the Ft3 and Ft4 levels. Most doctors would urge decreases of meds due to my TSH lab - but rarely in my past did anyone look at the Free T3 ranges or even my antibody counts.  I am in good hands after almost 7 years of terrible treatment and feel the best now since I got sick years ago.

The question is "why"?? Why does most thyroid patients ( or???) have to go to these extremes to find out things first before their health care provider does?  Are they uninformed about this stuff? I have a million question as to why?

I suppose I will never have my questions answered and have to thank God in a sense for leading me into saving my own life. Then to be grateful he guided me to a doctor "finally" to help me further. I just can't wrap my brain around why it took so long.