Low Tsh level with normal T3 and T4

[dianeschmurr]

I am an 80-year-old woman who had a total thyroidectomy 60 years ago.  My dosage based upon T-3 and T-4 levels has keep without symptoms.  Some 30 years ago, doctor reduced my dosage of Synthroid based upon a low TSH level.  I did not do well and saw another doctor in another area.  He found low T-3 and T-3 levels and increased dosage.  I did very well.  However, every time I move to another area and physician, I am forced to convince him/her to rely on my T-3 and T-4 levels.  I have been arguing with new doctors ever since.  After some disagreement with my current doctor and agree to lowering dosage to 1.0.  Now, current tests show T3 of 3.1 and T4 of 1.7 with a THS level of -0.00.  My new doctor wants to lower dosage again. Based upon other articles and blogs, I do not agree to cutting my dosage any lower that 1.0.  She is only relying on the TSH level.  Is reliance on TSH level only proper for long-term total thyroidectomy patients.

[gimel]

You are correct that medication dosage must not be determined by a TSH test.    Dosages should be adjusted as needed to relieve hypo symptoms without going so far as to create hyper symptoms.  This is called euthyroidism.  You can read all about this in my latest paper from the following link., which provides scientific evidence for what you say.

https://thyroiduk.org/further-reading/managing-the-total-thyroid-process/

This paper was written based on my own experience, 8 years of research, 13 years on this Forum, and  collaboration with a retired German Endocrinologist who has co-authored over 100 scientific papers, mainly on thyroid issues. After reading, I highly recommend giving a copy to your current doctor and asking her to read and consider treating you clinically, for symptoms, rather than based on TSH.  If she won't reconsider even after reading the paper, you will need to find a doctor that will do so.  

[dianeschmurr]

Here is an update to my earlier question.  Now arguing with an endocrinologist who is concerned about my TSH level.  My dosage remains at 88.  As a result, my T3 is now low.  He has put me through many blood tests.  Now, I am scheduled for an echo of my thyroid area.  He has even hinted that my thyroid gland may have grown back - 60 years after a total thyroidectomy by a respected surgeon.  My primary says that T3 can be added to my medication while continuing to adjust my dosage based upon my TSH.  Still fighting.  May have to find new doctors.  Hard to do because most consider the TSH the gold standard of thyroid function.  

[gimel]

Endocrinologists are the most rigid of all doctors as far as treatment.  They usually refuse to consider clinical treatment.  Instead they all go by TSH, which doesn't work for most people.  How can a low TSH mean anything when your thyroid hormones are well within range?  Makes no sense.

I'd say your best bet now is to give a copy of my paper to your primary and ask her to read and consider the evidence that TSH should not be used to determine thyroid dosage.  Instead you should ask to be treated clinically.  I also think you can get some good info from this link.  Click on fig. 1C and you will see the T4 dosages and FT3 levels that are required for symptom relief.  

https://www.hindawi.com/journals/jtr/2018/3239197/

If those two sources of info  don't convince your doctor, then let us know and give us your location and perhaps we can recommend a good thyroid doctor that will treat clinically, rather than by TSH.  

[dianeschmurr]

I finally convinced my endocrinologist to treat me clinically.  He is raising my dosage from 88 to 100 based upon my assessment of symptoms.  All I wanted was to go back to 100 MCG per day.  Thank you for all your encouragement.  Diane

[gimel]

You are very welcome.  In order to convince him, did you have to give a copy of my paper and also Fig. 1C from the second link above?  Just curious what it took to get him to change treatment.

[Barb135]

I, too, would be interested in what you had to do to get your doctor to agree to increase your dosage.  I have the same issue - negative TSH and less than optimal FT4/FT3.  Doctors get terrified of my non-existent TSH and insist I’m over-medicated.  

I, currently, “self-medicate” in order to keep m levels high enough.  

[dianeschmurr]

I asked him to treat me clinically based upon symptoms rather than TSH.  I also reminded him that I had 60 years of experience having had a total thyroidectomy at age 19.  I also suggest you print out the research papers above and give them to the doctor.  If you can't convince them by your symptoms, get another doctor who will clinically evaluate you.  Good luck!  I have fought many doctors over the years.  I agree that it is exhausting.  Hopefully, I will not need to get new doctors any time soon.  Both my primary and my endocrinologist have given up.

[Barb135]

Thank you - does that mean you took a copy of gimel’s paper to your doctor?

My primary care provider is currently managing my thyroid condition because I’ve given up on endocrinologists.   My pcp doesn’t freak out at my non-existent TSH, but he’s only willing to go “so far” with the medication, which is why I’ve resorted to the self-medication.   He doesn’t believe that symptoms, such as my weight gain/inability to lose, fatigue, etc are thyroid related, so I have to get my own levels up high enough to help me do the work.  

Although you’ve been at the thyroid issue a lot longer than I have, I do have 15 yrs experience with it and have been on several T4 meds, T3 med, T4/T3 combo - you name it.   It is definitely exhausting and really makes me not want to visit doctors when I have to fight for every mcg of thyroid medication.

I’m also hoping that I won’t have to get new doctors any time soon, since my current pcp is allowing my TSH to live in the basement.  It does scare me to think something might happen and I’d have to be hospitalized or something.  I’ve no doubt they’d blame a lot of things on being “over medicated”, when that couldn’t be further than the truth.  

Thank you

[dianeschmurr]

You have my full support and understanding of your problems.  Sometimes I have felt like giving up and just going along with their TSH ideas.  But, that just would exacerbate the problems.  Keep on fighting.  Hopefully, the endocrinology field will wise up and listen to us.  Right now some just keep hurting us.  I was fortunate to get a endocrinologist who was willing to listen.  He has now agreed to up my dosage as I requested.  There is a lot of us for which the TSH test does not work.  For all of you out there.  "Keep fighting the good fight for all thyroid patients effected by this love affair with the TSH test."

[Barb135]

Does it  not scare you a bit to think something might happen to cause hospitalization and they’ll take you back to the TSH standard.  I terrifies me because the last time my TSH was “in range”, I was very ill and gained 20 lbs that I’m still trying to get rid of…  :-(

I keep hoping that ATA and AACE will eventually get with the program and recommend that we be treated by symptoms, not TSH, but over my 15 yrs of being on this forum, checking new recommendations, etc, nothing has really changed.

I keep hoping!!