Post RAI with normal free T3 & TSH but low free T4

[Mandyintx]

I was diagnosed with Graves in 2004 and had RAI done around the same time. I have struggled ever since to feel normal. I go up and down all the time, it seems like every 2/3 years I cycle up and down the same 40-60lbs.  In November of last year I made the switch to Armour because after all those years on Synthroid I was still tired all of the time and finally found a doctor who would make the switch. My most recent blood work back in March showed my Free T3 normal at 2.9 but my TSH at 6.58 and free T4 at 0.67. We made a slight increase to my medication and now my TSH is in normal range 1.84 but my free T4 only moved to 0.69.  I am still utterly exhausted and gaining weight despite not changing my diet. I started at 1 gr or 20mg Armour and we added .25gr or 15mg in March. I just want to feel somewhat normal where I am able to function again. Even my ADHD medication isn't helping anymore to keep me focused and all I want to do is either sleep or eat carbs. My body hurts, I am bloated, constipated and just plain miserable. Please help.

[gimel]

Finding n Endo that is a good thyroid doctor is extremely difficult.  That is because most all Endos only pay attention to TSH for diagnosis and treatment.    That does not work for most hypo patients.  I am sending you a PM with some info on doctors in your general area, who have been recommended by thyroid patients.  To access, just click on your name and then from your personal page click on messages.  

[Vernamdt12]

Your answers are spot on.  A reputable Endo in Atlanta was exactly as you described.  It is disheartening.  Candida (tested with serum) should be considered for digestion issues.  

[gimel]

Okay, I suggest that for now, you give a copy of the overview to your doctor and mention the full paper as the necessary scientific evidence for clinical diagnosis and treatment, rather than based on TSH.   I would also mention that one of the authors of the papers is a retired Endocrinologist who is widely known and respected and co-author of over 100 papers on thyroid issues.   If the doctor is open minded at all, those papers and knowledge about the source and all the supporting scientific evidence should cause him to stop and reconsider how you are being treated.  If you want I can even give you a link to the source for the quote I gave you about how to treat hypothyroidism.  

If you can get the doctor to agree with even extended tests, you should always request Free T4, Free T3, Reverse T3 at least once to determine if a contributing problem,  Vitamin D, B12 and ferritin.   Also, even though in range, the range is too broad, so your cortisol is lower than optimal; however, that test is for total cortisol.  A better evaluation would be a diurnal saliva cortisol panel of 4 tests for free cortisol.  Most doctors won't order that test, but if not you could always order a kit online and do it yourself.  Cost is about $145, including shipping.  

For treatment I would point out the info about the average  amount of T4 nd T3 produced by a thyroid gland daily and point out that is equivalent to 130 mcg of T4, which is equivalent to 2 grains of Armour.   And that does not even account for the loss  when taking orally.   So that is why most people need around 3 grains or so.   The whole objective of treatment is to relieve hypo symptoms, not just get TSH within range.  That does not work, as confirmed by several scientific studies.  

If you think that cannot work, or probably will not work, then I am sending you a PM with info on a doctor in your general area.    It might take a while to get an appointment so I would go ahead and pursue that while you find out the possibilities with your PCP.

[crimsonflower1]

My husband has these very issues; would you be able to suggest, (recommend), an endocrinologist for our area? The one he has seen in Birmingham, AL had not been of great help! We live in NW Alabama....

[Jasper1966]

Finding a good endo takes a bit of work and research.  With the internet you can accomplish the task pretty easily.  Here is what I  would do:
* Find a list of endo within your insurance network and geography.  
* Research their education, experience, age  and background.  Late 40's  from a reputable school is your sweet spot.  
*Pour through patients reviews  like ratemd.com, etc.  
* Also search local thyroid chat groups which often have "good"dr lists.
* Don't be afraid to try a few

Good luck...

[gimel]

Just for comparison, one of our members (Red_Star) mentioned recently that,  "A normal thyroid gland produces 100 mcg T4 and 10 mcg T3 daily. 10:1 ratio."    Converting this to equivalent T4 your would multiply the 10 mcg of T3 by 3 and then add it to the 100 and that would equal 130 mcg of equivalent T4 produced daily by a normal thyroid gland.  This is approximately the same as two grains of Armour Thyroid.   Of course to achieve that actual amount by taking thyroid med, you have to account for absorption of the med.  So the med dosage would have to be even higher than two grains of Armour.  That is the reason I have read that full daily replacement amounts of a desiccated med like Armour is typically 3 grains  or more.   That is a long way from your 100 mcg of T4 med, or your 1 1/4 grains of Armour, all because of the "Immaculate TSH Belief".  

You are absolutely correct about the percentage of doctors that don't understand, or don't want to  know that there is more to treating a patient than just giving T4 med to get TSH within range.    And that approach seems just as rampant among Endocrinologists as regular doctors.   Instead a good thyroid doctor will evaluate and treat a hypothyroid patient clinically and  medicate as needed to relieve hypo symptoms, without being influenced by resultant TSH levels.  Symptom relief should be all important, not test results.    As for what that requires, note the following conclusion from a recent, excellent scientific study:  "Hypothyroid symptom relief was associated with both a T4 dose givingTSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."  

In addition, the correct definition of hypothyroidism is "insufficient T3 effect in tissue throughout the body due to inadequate supply of, or response to, thyroid hormone".    This definition incorporates both supply of thyroid hormone and the response to it, which is affected by a number of variables.    Chief among those are cortisol and Vitamin D.   I would also include as very important, B12 and ferritin.    So you should get those tested and supplemented as needed to optimize.  D should be at least 50 ng/mL, B12 in the upper end of its range, and ferritin should be at least 100.   Cortisol that is too high or too low also adversely affects thyroid.   If never tested for Reverse T3 that should be done also, in conjunction with a Free T3 test so that the ratio of FT3 to RT3 can be calculated.  

So the most important thing for you is to either give your doctor enough information to convince him to review and reconsider how you are being treated, or if that is not likely then find a good thyroid doctor.  If you will give us your location, perhaps we can suggest a doctor in your are that has been recommended by other thyroid patients.  

If you want to confirm all I have said, please click on my name and then scroll down to my Journal and at least read the one page overview of a full paper on Diagnosis and Treatment of Hypothyroidism: a Patient's Perspective.   If you do try to convince your doctor on clinical treatment,  you can make good use of a copy of the overview.  

[Mandyintx]

Thank you!! I will show her that information. I appreciate your advice! She has been helpful with running a lot of tests to rule out any additional autoimmune disorders. My cortisol levels were tested late March and had a result of 10.6 with a normal a.m. range being 7 to 25. T3 uptake was tested in March as well when the Free T3 and Free T4 were tested. T3 uptake was 29 with a normal range being 27-39. Free T3 at that time was 2.9 on a scale of 2.3-4.2. Last fall when I was on 137mcg synthroid my TSH was 0.04, Free T4 was 1.34, T3 was 1.02.  The dr lowered my dose of synthroid at that time because I was having chest pains around my left breast with a tingling sensation that would run down my left arm. I had a stress treadmill teat done and they said the cause was stress. I was tired at 137 but my “tired” and my weight gain have both continued to increase over the last 6-8 months as I have been going through this process, yet again. Even now I have “hot” spells where I have experienced a small increase in temperature. I am 36 years old and will break out into sweat like a woman in menopause. My cycle has remained pretty constant though so it doesn’t seem to be effected. I hope my Dr is able/willing to help but if not I am open to recommendations. I started this whole process in 2004 at Scott and White Endocrinology clinic here in Temple, TX. Anytime I have went to an actual endocrinologist they only want to put you on Levothyroxine which I have had was luck with than the Synthroid.

[Mandyintx]

I have never had much luck with the Scott and White Endocrinology Department, they tend to specialize in Diabetes and I think I’ve read more about thyroid disease in the last 14 years than they have.

[gimel]

There is much to discuss, but first, what was your Synthroid dose before the switch to Armour Thyroid?    Are you aware that thyroid med dosage should never be determined by TSH levels, but instead based on symptom relief?  

[Mandyintx]

I was on brand name Synthroid  100 mcg, and yes I know they are not "supposed" to treat to the TSH.  The number of practitioners even Endocrinologists that treat to that number would make your head spin. I'm tired of being tired. I am sick of doctors telling me I have Fibromyalgia or Chronic Fatigue syndrome. I know over the last 14 years that when my symptoms are properly treated that I am able to lose weight and feel well. Those times though are usually short lived and my "numbers" get off and then the doctors change my medication.  I appreciate the help and guidance.