Questions about Frees

[SharonB68]

I have struggled with hypoT symptoms for years and have been checked for everything else (SLE, RA, celiac, pernicious anemia (had low b12), vit d def (was low but taking supps), hyperparathyroidism (had several Ca tests in the 10s, but pth was normal) and more.

Every other possible cause has been ruled out and none of those explain the weight gain, low libido. The fatigue is the worst.

The question I have is about FT4 and FT3 when TSH is "normal".

Please tell me in all of your experience does your FT4 fluctuate?  Mine never does regardless of where my TSH is. My FT3 moves a little but the FT4 is always the same.

So if my TSH goes from 1.6 to 2.0, shouldn't my FT4 rise as the TSH is calling for it?  And then when the TSH goes back down to 1.5, shouldn't the FT4 respond?  It does not budge.

Anyone who had low normal Frees with "normal" TSH, please share your experience. Did your frees fluctuate?  How did you get diagnosed if everything was "normal"?

Anyone who can explain FT4 response or why it wouldn't respond to anything would be greatly appreciated.

[gimel]

In my opinion you are over-thinking the issue about Free T4 level being so consistent.  Your Free T4 level is too low.  Your Free T3 level is most likely too low.  Result is that you are hypothyroid and need thyroid med.  

The doctor is wrong about a trial of thyroid med.  It will reduce your TSH and your output of thyroid hormone, but will not kill the thyroid gland.  There are numerous sources that found that if the thyroid med is stopped, the gland will start to function again.  Also, why would thyroid med cause you to become hyperthyroid?  That would happen only if your dosage was so high that you developed hyper symptoms.  If the doctor thinks that a suppressed TSH makes you hyper, that is wrong.  You are hyper only if having hyper symptoms due to excessive levels of Free T4 and Free T3.  If you want info on this read Recommendation 10 on page  13 of the link I gave you above.  

You are not crazy.  The way you have been treated is crazy.  You need to get your doctor on board with prescribing thyroid med, or find a good thyroid doctor elsewhere, and move on.  

One last thing is ferritin.  Did I overlook any test results for ferritin?  If not tested you should make sure to do so and then supplement as needed to optimize.  Ferritin should be at least 70.

[SharonB68]

Hi Gimel,

Thank you so much.  I just can't convince a doc yet to give me a trial since all my tests are "normal" which is why I'm trying to see if the FT4 not responding is possibly "abnormal."

My GP is insistent that the risks are too great.  I've tried nice, firm, not nice and have gotten no where.  I have seen 3 GPs over the last years and not a one was willing to let me do a trial.

I had the Ferritin included in a table but it didn't fit and then I forgot to include it.  I was low several years ago and supplemented with iron.  Of recent, it is normal and I suspect that improvement is due to being menopausal so not getting depleted each month.  Thumbs up for menopause.

These are my iron studies:

2009 - Iron 43 Fe 28
2010 - Iron 95 Fe 27
2010 -              Fe 43

2016 - Iron 91 Fe 75

I also sent you a PM before I read this message -- feel free to respond if you have any info.

Thanks so much for your help.

[SharonB68]

Thank you for the feedback and info about trial dosing.

So my GP still has reservations and doesn't want to start a trial over concern that it will "kill" my thyroid and once I start, I can never go off because my thyroid will never function without it.  GP agrees that raising my FT4 would give me more energy, make my hair come back, reduce my weight but feels these are not as important as the possibility of becoming dependent and hyperthyroid.

I have gone through all of the old labs that I have kept for over 10 years to see if there was any trend.

       TSH (0.5-4.5) FT4 (0.8-1.8)  FT3 (2.3-4.2)  RT3 (8-25)

1999   1.4           2.0  (1.4-3.8)
           1.88         1.0   (0.8-1.8)
           1.92         1.1
           0.94 (rflx)
           1.58         1.1
           1.41 (rflx)
           1.43
           1.75        1.1
           1.99  (rflx)
           1.6        1.06
           1.6
           1.45        1.1
           1.62        1.1                     2.7                 17
           1.28 (rflx)
2016   1.6        1.0                     3.2                 18

Anti TPO Antibodies <1

The last FT3 and RT3 are better (although I can't say I felt better) but I was taking several amino acids including tyrosine, which I've since read helps with conversion, so maybe it was helping but I wasn't feeling the effects yet.  I was NOT taking for thyroid but following another means to health (happy to detail if you're interested).

As you can see, my TSH has bounced around the normal range for years but my FT4 has not moved (the top result was another lab and is still in lowest 25% of range).

The FT4 just confuses me.  I could see if I had only checked once or twice, but this is almost 10 times and it's always at the bottom of the range.  My GP said its the set point.

Maybe my thyroid is normal.  Would anyone tell me the trend of their FT4?  The 2 FT3 aren't too bad but I only have 2 so feel harder to distinguish a trend.

I can't find anything specific on a FT4 that doesn't move but have read about FT4 being in different parts of the range.  Is it normal for it to not move in response to TSH moving?  

I've had BBT averaging 97.6, but lows in mid 96s.  Also, what is with BP?  Mine seems to be going up -- isn't that a hyper symptom?  Or is it just weight gain?

Thank you again.  I'm just tired and tired of trying to understand why and find a way to fix or at least improve how I feel.  I'm now fat and lazy and unmotivated and I'm fairly sure labeled a hypochondriac.

What else could explain the symptoms?  I'm crazy. I'm starting to believe it.

[gimel]

You got some good advice from flyingfool.  I just wanted to provide you the following link.  I suggest reading at least the first two pages, and further if you want to go through the discussion and scientific evidence provided to support the 6 suggestions on page 2.  You can also give a copy of the entire paper to the doctor, to persuade that you need to start on thyroid med.  There is nothing in the paper that the doctor can effectively argue against, since it is all supported by lots of scientific evidence.  

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

As can be seen in the list of suggested tests, you have had all of them at one time or another except cortisol.  So it would be good to know that level, since cortisol affects metabolism of thyroid hormone.  

As for med and dosage, there is nothing wrong with using a T4 med as long as your body adequately converts the T4 to T3.  That can be assessed by testing for Free T4 and Free T3 and comparing their relative positions within their ranges.  If it were me, I would try and get the doctor to start with 75-100 mcg of T4 med.  That starting dose would get you closer to your likely optimal dose requirement much faster than starting on the usual 25 mcg and then waiting for 6-8 weeks to re-test and adjust.   Also realize that as you take thyroid med, the output of TSH will be diminished and the output of natural thyroid hormone will also be diminished.  Since serum levels are the sum of both natural thyroid hormone and thyroid med, the net result of dose increases is little to no change in serum levels until the TSH is essentially suppressed and no longer a factor.  After that further increases in med dosage will raise your serum levels.  

[SharonB68]

Gimel and Flying Fool,

Thank you again for all of your feedback, it really is appreciated.  As I mentioned, I am hoping my GP will be  open to a trial of thyroid med.

I will use the info and suggestions you gave and hopefully get the chance to see if I can feel better.

Quick questions -- what med should I request, in what dose and for how long should I request the trial?  

Are there any other tests I should request?  Cortisol or anything?

Thank you again.  It is amazing of you to take the time to help others the way you do.

Shar

[SharonB68]

Hi Gimel, thank you for your reply.

Symptoms: fatigue (immense, unrelenting), weight gain and can't lose, hard to get motivated (exercise, errands, etc.), constipation, dry skin, dry hair, hair loss (first legs and underarms and now head hair), always been cold (somewhat better with menopause hot flashes, but now have this weird cold hands/feet, hot torso -- prior to meno, just cold), crabby no doubt due to fatigue, low libido, puffy face (weight gain?), achy everywhere, memory issues, effort to focus.  There may be others, but these are the most troubling.

Had/have tingling fingers and toes, which was attributed to low B12, but didn't resolve even when B12 was up.  I also have sinus issues and this weird numb tingling in my nose.  B12?  Something else?  I don't know.  Doc didn't seem concerned so I ignore/get used to it.

I have been tested for SLE, RA, Sjorgerns, Celiac, Lyme and probably others but all negative.  In fact my rheumatologist has now told me that she does not believe that I have an autoimmune issue and taken me off plaquenil.  I have been seeing rhuemy for nearly 3 years and have not had one test that was positive other than a slightly elevated ana.  She said she believes my issues are endocrine related and said I should be given a trial of thyroid meds despite normal thyroid tests.

Testing I have had:

ANTI TPO AB             1IU/mL             <9

EBV -- old exposure

Ferritin                         75 ng/mL         10-232

Iron, Total                     91mcg/dL        40-190
(this was after 8+ mths no period and requested as last ditch effort to find cause of fatigue)

June 2016:

FT3                             3.1 pg/mL       2.3-4.2
FT4                             1.0 ng/dL        0.8-1.8
TSH                            1.6 mIU/L       0.4-4.5


Vit B12                        522 pg/mL     200-1100

LH                               30.8 mIU/L   0.5-54.7 (depending where in cycle -- indicative of meno)

FSH                            104.3 mIU/L  1.5-17.7 (normal -- anything over 17.7 is postmeno)

Estradiol                     <2

November 2015 (diff doc):

TSH                           1.16 mIU/L         0.4-4.5
FT4                            1.0 ng/dL            0.8-1.8

October 2015:

TSH w/reflex to FT4  1.28 mIU/L      0.4-4.5

December 2014:

FT3                           2.7 pg/mL         2.3-4.2
RT3                           17 ng/dL           8-25
FT4                           1.0 ng/dL          0.8-1.8
TSH                          1.62 mIU/L      0.4-4.5

Feb 2012:

TSH                          1.6  mIU/L      0.45-4.5
FT4                           1.06 ng/dL      0.82-1.77

Sept 2011 (5 mths postpartum):

TSH w/ reflex to T4  1.99 mIU/L     0.27-4.20

OLD TESTS:

Oct 2005:

TSH w/ reflex to T4  0.94 mIU/L     0.4-5.5

And then this weird one -- Nov 2002:

TSH                          1.99 mIU/L    0.35-5.5
FT4                           1.1 ng/dL       0.8-1.8
T3, TOTAL                203 ng/dL     60-161 (flagged HIGH)
T3 Uptake                 23 %            25-37 (flagged LOW)        

This is a diff doc at same practice (there have been several doc changes there), so it should be in my file.  I only remember at the time he said the result didn't make sense so he disregarded.  I know these tests aren't used anymore but I'm wondering if this indicates that what little T4 I was making was being converted more to RT3.  ?

This is about when I first started complaining of fatigue and weight issues -- like gaining weight despite walking 2+ miles everyday and eating well.  All attributed to having small kids.  I was naive and just accepted it all.  Over this time I've had multiple miscarriages (2 FT births as well) and gained 60 pounds, which I can't lose.

Vit B12 at initial reading was 202, range is 200-1100.  It bounced up to 600 and then settled around 450-500.

Vit D3 was 8.9, over 30 is base.  Got it up to 50, but bounces a lot.

I have a lot more tests -- comp meta, etc., if any of that is useful.

I apologize if this is difficult to read through.  If there is a better format, let me know.

And thank you for taking the time to look it over. As I mentioned, the one thing that seems strange to me is that while my TSH has bounced all over the normal range, my FT4 has stayed in the 1-1.1 range.  When does it ever get to that optimal range of 1.3-1.5?  Would that even make a difference?

[flyingfool]

Your FT4 are consistently too low in the range.

The rule of thumb that is used here is that to feel well, most people need to have BOTH of the following.

1) Free T4 to be 50% of the range or better. Your fairly consistent and your latest result is only 20% of the range.  I do not believe you have to worry about conversion to RT4.  Simply put you have so little FT4 to convert to begin with so it probably is not going into RT3.

You ALSO must have

2) FT3 to be a minimum of about 50% of the range up to about 67% of the range.  With more people needing it towards the 67% of the range.  You are testing at 42.1%

As you can see you BELOW BOTH of these values of the "rule of thumb".

Remember that each person feels well at different levels so it is called a rule of thumb for a reason.

ALL of your symptoms are consistent with low thyroid.  My recommendation to you is to go to your Dr and persuade him/her to give you a clinical trial starter dose of T4 medication.  And after 6 weeks report how you feel and get blood tested and results.  And hopefully you will begin to feel a little better.  I would bet you would.  Understanding that achieving a optimal dosage is more art than science and it is like winning the lottery that the first dose tried will be the "one" that works for you.  Usually it takes several small increases over time to finally get to where you feel well.

Do NOT let the Dr tell you that just because your results currently are within the "normal range" that you are fine.  CLEARLY you have already convinced yourself that how you feel is NOT fine and is NOT acceptable.  SO you need to get or find a Dr to finally get you some trial medication to start.

TSH is as stated above virtually a worthless test.  And the establishment of the "normal Ranges" are flawed.  It is a simple mathematical statistical term "normal".  It does NOT repeat NOT mean that you feel well or 'normal" when within the range. What it means is this:

They simply take all the people who are tested for the specific test. They then eliminate the lowest 2.5% of the peoples results and call them "too low" and they also exclude those with the highest 2.5% and cal them "too high"  the rest of the 95% of the "population" of those sampled are "the normal range!

Now think about this further.  Who is likely to be recommended to be tested for FT4 and FT3?

The answer to that is "of course people who are expected or at least they are suspicious that may have a PROBLEM with their thyroid."  

So from this obvious situation. It says that the total "population" of those tested for FT4 and FT3 are LIKELY to have a thyroid problem.  But of all of these potentially sick people. They only "eliminate" the worst of the worst on both ends.  And calling the other people who could be equally feeling like crap "normal".

See how that completely does NOT makes sense?

And see why the "rule of thumb" is to be at least 50% of the range or more?  As the population is skewed to sick people that they call "normal".  To feel well you need to be well up into the range in how you actually feel.

So be your own strongest advocate because no one else will.  DEMAND to be treated and get to the bottom of this.  Bug the Dr. until he/she relents to give you a clinical trial if for no other reason than to "shut you up!".

Reason your logic and argument that you only want to slowly be medicated simply to get up to 50% of the range in FT4.  Tell them you are not trying to go crazy and are asking to get to the top of the range.  You simply want to get to the MIDDLE of the range. OR until you feel well, whichever comes first!  You are NOT asking/demanding something crazy.  You are only asking to get to the middle or average of the range. You are not advocating for the moon.  Just to the middle!

ALWAYS keep getting tested for BOTH Ft4 AND FT3.  You should also keep a diary of your symptoms and how you feel. tied to your blood labs along with your dosage of medication.  That way you can plot out how the dosage changes BOTH make you feel AND have an effect on the blood labs.  This can then help decide on the next dosage change as over time you will see how X increase generally results in Y symptom and lab result increase.  Keep this record PERMANENT.  This is critically important if you change Dr or your Dr retires or moves away ect.  So you have evidence to prove to the new Dr that even if you r TSH is suppressed that it is no big deal. That you have proof that you felt like crap until you got to your current medication state etc.  This may be the most critical medical record YOU keep.

understand while all sorts of history is kept in the electronic medical record. They are NOT correlated specifically to dose and symptoms and blood labs.  Not in a simple usable format. The Dr would have to spend considerable amount of time to create t hat information.  And Dr's simply spend what 15 minutes on average with each patent.  So at best they have a rudimentary or cursory review of your medical history.  So again, be your best advocate. Keep and print out and even bring your own diary with you.  DO NOT be "Bullied" by your Dr or made to think they are somehow superior to you.  They are simply another human being just like you.  Sure they have training, but that doesn't mean you can't get training/education yourself.  Do NOT simply accept whatever line the Dr gives you.

Think about it.  You have taken their line of BS for years and you have spent years feeling like crap.  It is up to you to decide to end that cycle.

Doing the same thing over and over again expecting a different result is one definition of insanity.

To change things in your life, you have to CHANGE something in your life.  Continuing to be  told you are "normal" when you feel terrible just doesn't make sense anymore.  I think you realize this or you wouldn't have resorted to come to this site.

[SharonB68]

Thank you flying fool.  I almost cried when I read your passionate reply.  Clearly you have been down this road!

I have so long ago said I didn't feel well and it was blamed on so many things.  I have told countless docs that I felt my life was passing me by and I just didn't have the energy to enjoy it.  I have missed out on so much with my family.

I can't know how anyone else feels but I do know that I can't do what other people can, I'm just too tired.

My 75 yo MIL can stay up later than I can.  I've even gone into the bathroom to lay on the floor for 10 minutes when company has come over and I've almost fallen asleep watching a movie at 8pm.   It's awful just trying to get going.

I can't prove it's thyroid or not, but I have seriously had everything else checked.

Some of the rhuemy tests are also markers for cancer, etc., and if I just say they are the most normal blood tests in the world.  She just looked at me and said there was nothing wrong with my rhuematologically and my lab work was great but that I should have a trial of the thyroid med to see if it improved how I felt.

My GP thinks it will give me heart problems which is why it was refused when I asked.  The rheumy is sending a note to the GP to state doing a trial.  I am hoping that will convince the GP.

Anyway, thank you for the reply and explanation.  It is very much appreciated.

[gimel]

First thing to mention is that TSH is a pituitary hormone that is affected by so many things that at best it is only an indicator, to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T4 and Free T3.  TSH even varies by up to 70% over the day.  So the main value for TSH is to distinguish between primary hypothyroidism (Hashimoto's Thyroiditis) and central hypothyroidism.  

So please tell us about your specific symptoms and also post your Free T4 and Free T3 test results, along with reference ranges.