Lower than low FT3 levels

[nancib]

I must have the lowest Free T3 on the planet.  I've been searching the internet in every way I can think of, and I have yet to find anyone who is hypothyroid with a Free T3 as low as mine.  On the contrary, most people are having trouble with a Free T3 level that is too high!  :o  

I'm desperately fighting for my life, and feel VERY strongly that I'm losing the battle.  I have lost so much ground over the past  5 years, that I fear someone might come along, take one look at me, and try to bury me before I'm ready to go.  :(

Unless I can begin to reverse this falling Free T3, I really see no hope for me.  

No one seems to understand the lowering FT3 level.  Some people have some "ideas" as to why it happens, but no one really seems to know.

I have no other health problems exEPT hypothyroidism.

I do have adrenal insufficiency--Zone 4, Maladapted phase 2.--but this was discovered only AFTER I became hypothyroid and was given thyroid meds.  Who KNOWS which came first, the hypothyroidism, or the adrenal problem...........it might not even matter.  :\  (Anyhow, I've been on Cortef for about a year and a half...presently taking 20mg-- small doses throughout the day.


There must be SOMEone out there is this great big world who has now, or HAS had, a Reverse T3 problem, and, somehow, is managing, or has managed, to turn it around.  (Since I've never been tested for "Reverse T3, I can't be SURE that it's a reverse T3 problem; but my common sense tells me there must be a correlation between Low Free T and Reverse T3 levels.)  

Please help if you can; I'm very weak, and I feel like I'm running out of time to salvage some sort of life for myself.

Thanks.

  

[sunrock]

I was in the same story pretty much as you...I was changing my meds too fast,  dosage etc and not waiting the 6 weeks...blaming the T4 and such. I hit bottom by almost falling into a uncontrolled sleep..at the wheel!

Since then (with great help from this forum) I demanded the right tests...got a different insight to my problem  with different test readings and a dosage of T3 medication, that helped a lot, and now am working (and waiting) for the the right T3 and T4 dosage. Feeling better  but not there yet...and will have blood work done every 6 weeks to see how they match with the way I am feeling.
You do have to hang in there and be patience.

I do know what you are feeling...you are not alone but it can and will get better.
Mia

[milesrf]

I found a rather recent article that might help your doctor do something.

Deiodinases
http://nahypothyroidism.org/deiodinases/
Not very easy to follow.

[Barb135]

I agree with mtkst13 - you really MUST stay on a med long enough to let it help you.  I can't imagine bouncing around that - you are keeping your body in total turmoil so it has no chance to heal.  

Your labs from June 5, indicate that you are still hypo, but again, you aren't going to feel better until you decide on a med and stick with it.  What does your doctor say about stopping/starting the meds all the time?  

We are all fellow sufferers and have had the same symptoms you have.  It IS scary when med dosage is changed - at least it is for me.  I've heard so many things about going hypER that it scares me to death, and every little thing that could be indicative of going hypER gets my attention right NOW, but I don't just indiscriminately change/stop my meds because I also know how horrible it is to be so hypO as well.

I think the name of the game here is to get and stay consistent with your meds, so your body can begin to heal.  If you feel uncomfortable about a symptom(s), talk to your doctor - it's possible that not everything that happens is even thyroid related.  

Are you taking your meds properly - first thing in the morning, then waiting 30 - 60 minutes before eating anything?  Are you taking other meds that might have an impact on the absorption of the thyroid med?  Are you making sure that thyroid med is separated from calcium and some other vitamins/minerals by at least 4 hrs?  These are all things to consider as they may affect how well the thyroid meds work/or don't work.........

[mtkst13]

you really should stay on the meds at a consistent dose for 3 weeks.  if you're uncomfortable at 3 weeks, get your blood checked to make sure you're not going HYPER.  

the sweating and such could be completely unrelated or it could be from the meds.  keep tabs on your symptoms, and if you start having rapid heart rate or something out of the ordinary, call your doc.

when i have a med adjustment (increase or decrease), i get anxious and scared as well because i have strange symptoms like you are having...arrhythmias, dizziness, fatgue, etc.  at the 3 week mark, if i'm still concerned, i'll call and ask to get labs done just to be sure.  if the labs are showing hyper, they'll decrease your dose.

try to take it easy and keep tabs on your symptoms.  get your labs done if you're not feeling well.  however, DO NOT increase or decrease your dose until you get the labs done because you'll never know if they're working or not.  

[nancib]

Thanks, Smilerdeb.  I just saw your post.  Unfortunately, I went back to the Naturethroid and have been on it for exactly 7 days today.  You don't think I should be taking the Naturethroid? ?   Should I go back to Synthroid?

Since beginning the Naturethroid again, I've picked up some really horrible symptoms in the past 2 days:  Profuse sweating, numbness in some of my fingers and toes, and other major hypo stuff--at least, I ASSUME hypo.  :/    I certainly don't feel like partaking in any activity whatsoever....that's why I assume it's 'hypo.'

Anyhow, I've been taking the NT daily in 2 divided doses; but, this afternoon, due to these new and unusual symptoms, I took only half of the afternoon dose, 1/4g.  

I just can't function here at all, but everybody seems to think I'm not even taking enough!  

What do you think of these new symptoms?  

By the way, this profuse sweating I've had for the last 2 days is so unusual it's not even funny. I've NEVER sweat to any degree that I can remember, and I certainly have not had "smelly" sweat like this.  No matter how often I shower--and with Dial soap--the sweat and bad odor is back in 5 minutes.  :((
                                                                LABS FROM JUNE 5 2009  

                                                             FT3 217--------range 230-420 pg/dl
                                                             FT4 0.9---------range  0.8-1.8  ng/dl
                                                             TSH 5.17------range  0.40-4.50 mIU/L

[Smilerdeb]

My opinion and advice is as follows: Each dose must be stayed on for 2 weeks...do not increase or decrease.

Week 1& week 2......50mcg T4 med x 7 days

Week  3 & week 4.....50mcg  - Mon/Wed/Fri/Sun
                  62.5mcg - Tues/Thurs/Sat

Week 5 & week 6.....50mcg - Mon/Wed/fri
                  62.5mcg Tues/Thurs/Sat/Sun

Week ........LABS

Slowly increase the extra 12.5cg (1/4 of a 50mcg tablet) only once a fortnight until you are on 62.5mcg 7 days a week.

By stopping and starting the meds, you arent giving them the chance to absorb into your system.
Your body is 'getting a hit' then its being 'knocked down' when you stop the meds.
So a continual rollercoaster which will drive you nuts, cause you unneccesary pain and make you a basket case.


There are going to be days at the start when you feel palps, when you feel like Cr@p, when you think....."OMG i'm on too much!"
This isnt the case.
This is the body getting used to the meds.

Good Luck :)

[nancib]

To: mtkst13, gimel, Barb135, and AMG3369.

I want to thank you all so much for your good advice and suggestions--it's really appreciated.  I need to go and sleep on it now.  I'll be back when I have something a little more positive to report.

P.S.  I would especially like to thank AMG3369 for referring to me as a "fellow sufferer"...made me feel like I'm not so alone.  :)

[mtkst13]

i agree with gimel and barb.  you have to stay on the meds for 6 week intervals, then test, then adjust from there.  the meds have to build up in your system over time.  when you stop and start and switch and change doses, you're confusing your body.  

stay on a consistent dose of the same meds for 6 weeks.  test and adjust.  go for another 6 weeks.  test.  if things are still not improving, then start considering different options.  

try to be patient.  we all know it's hard, but give the meds a chance to work.

hang in there.

[AMG3369]

Hi, Finally a fellow suffer that is going thru what I have been thru. You have to have your Reverse T3 checked! My Free T3 went down to 60. I did not die. Antibodies were getting my T3 and it went into reverse. Why this happens--noone knows. Cytomel did not help. No matter what T3 I took, it went into reverse. My Endo gave up and put me on Armour 180. Only then did I begin to feel better. I am waiting for my last Reverse test. I think the lab sends it to Mayo clinic. I am starting down hill again and I think it may be the change with the Armour compounding. It looks like you are way too low on meds.

[Barb135]

I think you and I are pretty saying the same thing.... ...... basically, to stop going on and off meds, start over at low dose and increase in small increments at approximately 6 week intervals, check for antibodies.  Cytomel helped me when I was in a similar situation, but may not be right for someone else.  

Will be interesting to see what others have to suggest.  

[gimel]

We all need to try and come to some agreement as to what is best suggestion for you.  At this point you can't continue to continually adjust your meds and dosage amount so quickly.  By doing so, you never really know where you are and what is causing some of the reactions.

I think that we first have to agree that both your free T3 and free T4 are on the low side.  To me this indicates that  there is not a substantial problem of converting T4 to T3, since they are roughly equivalent.  The range you show for the total T4 result is obviously an error.  If it is anything like the ref. range my lab uses, I think your TT4 is also near the low end of the range which is consistent with your  low/no meds.   In a normal situation the recommendation would be obvious, just start back on a low dose of your synthroid and test every 6 weeks and increase slowly and surely every 6 weeks until your "Frees" are in the upper part of their range and hypo symptoms subside.   The only negative that I see to this approach is your comment that you have never been able to go over 50 mcg of meds.  What kind of reaction gave you this conclusion?

The other thing I would suggest is to test for antibodies to try and determine cause for the hypo symptoms.  That would be important to know, in order to better understand your reaction to meds and how best to treat you.

Opinions/comments from other members will be very helpful in trying to make a consensus recommendation to nancib.

[Barb135]

You posted your last one, while I was typing mine so we crossed there.  

It would appear that part of the problem might be the fact that you are "bouncing around" with your meds.  It takes several weeks for a T4 to be effective and when you only take it for a few days, you aren't giving yourself a chance to stabilize.  

I would think it might be best if you basically start over at a very low dosage and gradually work your way up.  Just remember, it takes several weeks for any dosage change to take effect.  

If after you slowly work your way back up with the T4, you still don't feel better, try getting your doctor to add cytomel to it.  

I really think you should NOT be bouncing back and forth between synthroid and Naturethroid.  Either one might work for you, but you need to stay on one or the other long enough to give it a chance.  

[Barb135]

I'm sorry, I still don't see where you said what thyroid med you are on.  mtkst13 mentioned armour, but I don't see where you said that.  Did I miss it somewhere?  

With the high TSH, low Free T3 and "borderline" Free T4, it would appear that you are still hypo and would require an increase in your thyroid meds.  AND you could have a conversion problem.  

Your Free T3 is just slightly lower than mine was at one point, with a Free T4 the same as yours.  I got my endo to give me a script for cytomel which is a t3 med - it helped immensely to make me feel better, although both my FT4 and FT3 are still at the bottom of their ranges.  My levels are far from optimal, but we just did a dosage change a week ago, so will retest again in a few weeks.  

If you are, in fact, on armour you might just need to increase your dosage.  If you are on a T4 med only, you might want to think about a dosage increase and/or adding cytomel to your regimen.

Have you had any antibody testing done to check for autoimmune disease?

[nancib]

oh, forgot to say that even though I've never been able to go higher than 50 mcg with the T4 meds, when I STAY on the 50 mcg, after about a month I begin going downhill rapidly with mega hypo symptoms.  So 50 is not the magic number either.  :((

[nancib]

Oh, forgot.  I felt sooooo bad up to and after the last test, on June 5 that I stopped taking meds altogether.    When the lab test was taken, I had been on 1 grain (60 mg) Naturethroid for 10 days,, and for the 2 weeks prior I was on 1/2 grain Naturethroid and 25 mcg Synthroid.

I went in to get the test because I could hardly move one foot ahead of the other, my eyes were nearly swollen sho\ut, my nose, eyes, and head felt like a nylon stocking had been drawn over them, then knotted and suspended from one of the the ceiling beams. :(

Then, after I saw this test I panicked and went back to taking 50 mcg Synthroid for a time.......I stopped keeping track of things.  

I took the 50 mcg Synthroid because when I was on that dose of Synthroid, a couple of years ago, it was the only time I ever felt human.  

I told my Naturopath at that time that I was feeling pretty darn good, and his exact words were, "Yes, but, according to your lab tests, you could feel better!"  "Don't you want to feel better?"  I told him I thought I felt 'good enough'....and I really did!  But he insisted I could feel better, and raised my dosage. I did what he said, and have been practically at death's door ever since.  It was right after this that my FT3 began dropping "below" the low normal range.

I remember I took the 50 mcg Synthroid for several days after the test, and just became worse and worse.  So I stopped that for 2 or 3 days, then started taking 1/2 G Naturethroid......anyhow, I've been all over the place because I am half crazy!!!

This naturopath was on the list of Top Docs, but I had to drop him because he was the worst doctor I had ever been to, and that's saying a LOT.

I just can't afford the money anymore--I need to go this alone.  I hope you won't criticize me--I just couldn't take that right now.  I know I've been all over the place with my meds.  Please just trust me when I say I have no choice but to do this alone.  I soooo need your help.

Is there anything else you need to know?  (I can't seem to raise any T4 med over 50 mcg--never HAVE been able to.  That's why ANY formula I come up with, I try to not go much over or under that amount with the T4.
For example , I took 1/2 grain Naturethroid and 12.5mcg Synthroid (total: 49.5 of T4) at one point, and another time took  1/2 grain Naturethroid and 25 mcg Synthroid (total: 62.0 mcg of T4).

I need to start from square one, but I'm not even sure where square one is.  I can't even find a pencil or paper or tablet.  

I took no thyroid meds over the past 2 days, but I'm so afraid I might die I decided today to take 1/4 grain of Naturethroid.  My brain is so scrambled, I'm not sure what to do.  

  

    

[mtkst13]

how long have you been on armour?

[mtkst13]

how long have you been on armour?  maybe you have problems converting t4 to t3, which is why your ft3 is low.  

if you were only on synthroid, you'd have a lot of t4 and not enough t3...but your tsh may be low or normal since your t4 is high.  of course you'd still feel like poo since your ft3 is low.

since you switched to armour, your t4 dose is a little less and now you have t3 introduced into the picture.  your tsh probably went up because it's sensing the t4 decrease.  it it's only been a few weeks since starting armour, it may take a little bit of time?  or maybe you need a higher dose of armour?

[nancib]

I'm sorry, guys-- I'm so weak and tired it's hard to think.  Here are my latest results:

                             In Range            Out of Range                 Reference Range

DHEA SULFATE       <15                                                   ref.range OR = 185 mcg/dl

T4, Free                    0.9                                                    0.8-1.8 ng/dL

TSH, 3rd                                          5:17      H                   0.40-4.50 mIU/L
generation

T3, Free                                           217       L                   230-420 pg/dL

Throid Panel
T3 Uptake                 24                                                     22-35%

T4 (thyroxine), Total   6.2                                                    4.5-3.8

Free T4 Index (T7)     1.5                                                    1.4-3.8        

[Barb135]

Gimel is right - without knowing what your lab results and the reference ranges are, along with what type of meds you are on, it's impossible to respond.  

[gimel]

What type and how much thyroid medication are you taking?  Also, please post your lab test results and reference ranges so that members can provide the best response.