I think I need T3 but doc says no way

[Flys4Food]

I have been taking synthroid for about 2 months now after finally being diagnosed. I started on .5 and within a week started feeling better. However...after the third week started feeling run down again. Called the doc and he increased to .75. Started to feel better again and just had my blood retested. I think I need some t3 added to synthroid but doc says all is normal.

Here's the last labs...

TSH 0.89.....started out at 3.5

FT4 1.1....started our at .9     lab range is 0.8-1.8
FT3  319...started out at 319  lab range is 230-420

Although I'm much better I'm still having hypo symptoms; achiness, joint pain, etc.
My morning temp is still under 97 and my pulse still under 60.

However, My family physician, not the endo that is treating me, has wanted to put me on cholesterol meds for about three years. I wouldn't do it! After the synthroid my levels have dropped from 270 to 183 with LDL and HDL doing the same. On the right track but not quite there yet.
So what do you all think...agree with me or the doc about the t3?

Thanks

[laura1967]

Your T4 level is still too low, should be at least mid normal range...... and your t3 level optimally should be high normal range.
Some drs put too much emphasis on TSH which actually shows pituitary function. He should be treating you by your free's which are the actual active thyroid hormone in the body.

[gimel]

Totally agree with laura.  Here's some good reading material to reinforce the importance of the "Frees", and the levels necessary to alleviate symptoms.

http://www.hormonerestoration.com/Thyroid.html

[goolarra]

I don't agree with either you or your doctor, but agree with both the above. All is not "normal", but neither do you need T3.  You need more T4 meds...worry about adding T3 later if symptoms aren't alleviated once FT4 is higher in the range.

Here's an argument for your doctor:  What's the harm in nudging the FT4 higher up in the range to alleviate symptoms?  You'll still be "normal", but you might feel better.  Why stop increasing when FT4 is barely in range?  We have this whole range to play with; why not use it?  

[Flys4Food]

Thanks to all for  your comments. I'm writing a letter to the Dr. today asking  him why we are stoping here. I guess my question is....won't increasing just my t4 lower my TSH even more. And...there are some studies that show anything under .5 or so can contribute to heart disease and wouldn't I go hyper with more T4.
I'm also wondering why, with all of the t4 so far have my storage of t4 and my ft3 not gone up.

Thanks All...I'll keep you posted
Here's a copy of the letter I'm sending the Endo


First of all I would like to thank you for diagnosing my hypothyroidism…I feel much better with the medication you have me on. I’m hoping for further improvement of my remaining symptoms in the coming months. My cholesterol did plummet to normal though….hallelujah!

I just have a couple of questions. When I talked with your nurse yesterday, I asked if I could be put on a small dose of T3. I’m sorry that you have to deal with someone who surfs the internet looking for medical answers but, that’s what got me to you! Anyway…I have a lot of faith in you and will ultimately do what I’m told….. Sometimes I just need some answers to cure my curiosity!

Everything that I read says that, for optimum numbers, my Free T3 should be at the top of the normal range and my Free T4 should be in the middle or upper middle of the normal range. This last round of tests showed my FT3 in the middle and FT4 in the low normal. From the previous testing my Free T4 went from 1.0 to 1.1 and my Free T3 actually went down this time from 321 to 319. I know I have an almost perfect TSH now but what the heck is going on with the other numbers; Would a small dose, just a dab, of T3 be beneficial in helping the remaining hypo symptoms? Or...what about just more T4 and the heck with the TSH?

[Smilerdeb]

I agree with goolarra.

I also think that not enough time has lapsed to really be prescribed a T3 med yet.
it can take up to 12 months for levels to stabilise if not longer.
Two months just isnt long enough to expect a Doctor to put you on a T3 med.
The secret is baby steps, as Ive always said and as frustrating as it is , it is the truth.
I have been down both roads....increases often = Hyper.
Increases slowly = stabilised levels.
If all else fails THEN T3 should be considered.
I just dont think you have given your body enough time to adjust to the T4 med.

But thats just my personal opinion.

[Barb135]

I agree with what everyone else has said.  It takes time for your body to get adjusted to the meds and 2 months is not long enough.  

I am on cytomel, which is T3 med but that's only because my Free T3 was very low.  It's now about the same level as yours (mid range).  T3 meds are very powerful and must be used with care.  

At my last visit to the endo, we actually cut back on the cytomel and raised the T4 med.  I am anxious to have my next blood work done so I can see what's what.  I DO feel better, but with Free T4 still only at 0.9 and Free T3 at 320, I still have symptoms.  My problem is that my TSH is SO low (0.19), my endo keeps wanting to lower my T4 meds rather than raise it.  *I* say "forget about TSH and let's get the Free T's in line", then think about the TSH if necessary.  

[skeeterknitwit]

I also think you need to give this more time, but your FT4 is too low.  I noticed that my symptoms tend to lag behind my labs by a month or more.  That is - I still felt hyper when my labs said hypo.  A month later, hypo symptoms hit after I started Levoxyl.

This idea is controversial, and board members with Hashi may slap me for saying this.  How about a kelp supplement?  Since your body uses iodine to convert T4 to T3, iodine can boost your T3 naturally.  I've heard some say that iodine can further damage a diseased thyroid gland.  Others say it has been a life saver.  It is certainly less costly than arguing with a Dr. who refuses to give you T3.

[goolarra]

Actually, T4  is converted to T3 by LOSING, not gaining iodine.  The 3 and the 4 actually represent he amount of iodine in each version.  T4 has four atoms of iodine, T3 has 3, and yes, there are 2 and 1.  So, once T4 is made, no more iodine is required.  

[Smilerdeb]

You are a brilliant source of info goolarra lol (and I mean that nicely).
Goolarra is 100% correct.

[Flys4Food]

Thanks for all the input. You are probably correct BUT patience is not one of my virtues!!!
I guess a few more months won't hurt anything...I've been suffering with hypo symptoms (unknow to me of course what it was) since 1981 right after a nodule popped up on my thyroid. Doc says a lesion is still there. Was a firefight and had to retire because of the headaches and fatigue. Ugh! I'll keep you all posted what happens and again, thanks for all of your imput AND...keep it coming

[Flys4Food]

Hey...it's me again. Talked with my doctor's nurse today in answer to the letter I sent him. She stated that all of the test numbers were "in limits and within the range of error".Whatever the heck that means!
He was trying to keep my TSH at 1.0 and believes that the treatment at this time is doing it's job. Sooooo, what do you think? Should I wait patiently to see if he's correct, find a new doctor, or badger him some more. He is listed on the top docs of the about thyroid website. What do you think of the dr. on the hormone restoration website. Would he be worth contacting? I am a pilot...I can fly to Pennsylvania!!

Thanks

[goolarra]

I'd get specific numbers on all those results "in limits" and their reference ranges.  If they're "in limits" like the last labs you posted, you still have lots of room to tweak meds to get rid of your symptoms. A 1.0 TSH may just not be right for YOU.

You do have to be patient, but you don't have to be foolhardy!

I don't know enough about Lindner to comment.  His article seems to reflect some good ideas, but who knows how he is as a clinician.

I'm working on a short (?) commentary I wrote about the proper use of reference ranges.  I have some editing to do, but when I'm finished, I'll post it to you.

[Flys4Food]

The numbers are the same as I posted except...I was mistaken on the FT3. It actually went down from 321 to 319 six weeks after starting treatment.  I'm also borderline low on Testosterone, DHEA, and B-12.
I was low in Vitamin D but took 50,000 units once a week and got it up to 50.

thanks

[goolarra]

Your FT4 is still quite low, and you've only just started on levo a couple of months ago.  It can take a long time for meds to stabilize in your system...we all wish it didn't  I think you need a fine-tuning T4 increase, but still think it's too early to try T3.  It can help, but it has it's own set of problems.  

I'm editing my article after lunch...will PM it to you..  

[dani2776]

I would love to read the article too!!!!!

[Flys4Food]

Sooooooo, actually all the T4 has done right now is suppress my TSH?
Should I feel better in the coming weeks as my FT4 comes up...and I actually convert to FT3? I'm  feeling a bit better now...the body stiffness that I had is going away after years and I'm definately not as tired. If my T's didn't go up...how did I improve? Just trying to learn....

Thanks

[goolarra]

Well, your FT4 has actually gone up from 0.9 to 1.1.  That's a significant improvement (20% of the range from low limit to high limit).  However, as I said above, there's still plenty of wiggle room to increase meds a bit and push that FT4 up a bit more in the range, until your symptoms are all alleviated.  I don't think it will take a huge adjustment, either.  My guess is perhaps to 81.5 (1/2 an 88 + 1/2 a 75, or 75 and 88 on alternating days) or even 88.  Don't forget, although a low TSH often indicates hyperthyroidism, it is not the TSH per se that makes you hyper.  It's high levels of T4, and especially T3, that make you hyper.  You are no way near the upper limits on either of these two.

You should feel better as your FT4 comes up.  Your free's WILL go up with meds increases.  Never heard of anyone who increased their levo and didn't increase their FT4, unless they were taking their meds with something (food, drink or other meds) that blocked absorption of the levo.  You're not doing this, are you?

You also have to remember that if you have been hypo for years and years, it is going to take a while for your body to heal.  You also have to remember, Mr. Impatience ;-), that you've only been at this for a couple of months.  I think your progress in two months is excellent.

[Barb135]

I'd like to see your article as well.  Is it possible that you could just post it?  Or if you can't do that, could you PM it to me also?  Thanks

[goolarra]

Don't forget, this is my opinion, and I am not a doctor!

Proper Use of Reference Ranges in Treating Hypothyroidism:  Some Ideas to Discuss with your Doctor

Many hypo patients or undiagnosed hypo patients have an array of hypo symptoms, yet their lab work (free T3, free T4 and TSH) indicate that they are within the reference ranges that doctors erroneously refer to as “normal”.  TSH is often high in the range (or maybe even above the range according to the latest standards of 0.3-3.0 which many labs and doctors still refuse use) and FT3 and/or FT4 are low in their ranges.  Many doctors think that if labs are anywhere within ranges, their job is done...patient is no longer hypo, any remaining symptoms are not thyroid related, patient is fat and lazy.  NOT TRUE.  

Please see illustration below.  Each of us has a personal reference range within the population reference range at which we are euthyroid (neither hypo nor hyper).  A shift in lab values of the individual outside of his or her individual reference range, but still within the population reference range, is not normal for that individual.  Many don't feel well until FT3 and FT4 are in the upper half of the ranges.  After all, the population ranges of FT3 and FT4 are statistically determined distributions of patient results; by definition, approximately half the population will be euthyroid in the top half of the range and approximately half in the bottom.  If you are one of the people whose personal range must be in the top of the ranges, and your doctor won’t treat you or won’t fine-tune your medication when your results are in the bottom of the range, you are left hypo.  Your doctor may tell you your labs are "normal", but they are NOT “normal” for you.

Reference ranges of test results do not imply that everyone is going to be well as long as they are anywhere in the ranges.  The ranges are broad (e.g. 0.6-2.0 for FT4).  If your personal FT4 reference range was 1.6-1.8 when your thyroid was functioning properly, does it really make any logical sense at all that now that you are on replacement hormones, you should feel comfortable with an FT4 of 1.0?  No, it doesn't.  We all have a set point that is optimal for us...doctors should be finding it and adjusting medication to it.

If labs are within ranges, it's time for fine-tuning (or initiating a low dose trial)...increasing meds slightly if hypo symptoms are still present.  This will move FT3 and FT4 up in the range and alleviate symptoms…that’s the goal.  The ranges define the universe in which we can freely adjust medication; its entire breadth from lower limit to upper should be used for this purpose.  The patient will still be in the reference ranges, but he or she will no longer be symptomatic.  

Illustration:
                                                   Personal
                Current                      Reference
                  Level                  Range
0.6               1.0                       [1.6……1.8]          2.0
|------------Population Reference Range---------------|

With an FT4 of 1.0, patient is still hypo according to his/her personal reference range.

[Barb135]

Thank you very much for posting that.  It's an excellent article and I agree with you 100% and this is exactly the problem I'm having right now.  

My Free's are in the normal range (FT4=0.9; FT3=320).  We had to cut back on my cytomel because I was having rapid heart rate and palps, so we raised my T4 med - against the wishes of my endo.  He wanted to cut the cytomel completely and leave the T4 med the same in spite of me still having some hypo symptoms.  Fortunately, he was relatively easy to convince.  

Since my original TSH of 55.54 prior to meds, my TSH has been running very low (0.19), which was up from the 0.01 the previous blood work, so my doctors are very reluctant to do anything but lower my med.  

Now we just have to find a way to convince doctors that not everyone fits the textbook example........

[goolarra]

I may be advocating for people in your predicament since we hear this so much of the time.  But, my case is actually the dead opposite.  My hypo symptoms went away as soon as my free's got into range (very low range).  However, my TSH remained high (high teens at best).  I finally found out I have a pituitary issue as well as Hashi's.  My TSH will never go down.  In the meantime, my PCP had just kept saying, "Need more thyroid".  Tried to kill me!  There are others with the same issues as mine, but we are fewer...or at least we hear less from them since they are "corrected" lower in the ranges.

Text book cases...NO!

[Smilerdeb]

I did find out something about my levels and symptoms.

I found that if my tsh is lower than 2.3, I get hyper symptoms...regardless of the FT4 & FT3 levels and if the TSH goes over 2.5 I ache like he//. (hypo).

So I concentrate on my Free's first THEN my TSH.
If I keep my FT4 is the mid-upper level I am good and if I keep my FT3 in the high range I am good.

It is my TSH that cause the symptoms...not my FT3 and FT4.

Its taken a long while to figure that one out for me so I dont take much notice of my TSH unless I start to ache then I know the TSH is 'out of whack'.

Everyone is different as none of us have the same DNA.
The sooner Doctors realise this, the sooner we may have more quality in our lives.
I am lucky to have a Doc who goes by symptoms and not the TSH.

[stella5349]

Great article goolara....

I may have missed it in there, but did you go into discussing the "real" validation of the TSH at all?

I bet if you added the TSH true information and having people tuned in on the TSH and pitutiary function you may spread the word farther :)

Excellent reading material. You have a great gift.

[Flys4Food]

Thanks again
Nope...no food or drink, except water, with the meds.
I set my alarm for 6a every day, take the meds, lay there another half hour. Get up, feed the horses, take a shower, then eat. Over and over and over again...kinda like the movie Groundhog day!! All makes much sense to me...thanks for helping. Why though, do you think my FT3 actually has gone down since on the meds or is it just with-in the range of error?

GC