Monday, March 2, 2015

Search for T3 Only Doctor

The naturopath, who diagnosed my hypothyroidism and initially prescribed a T4 drug, later added a T3 drug, because T4 only didn't eliminate my hypothyroid symptoms. After a year of intermittent success with various combinations of T4 and T3, I decided to eliminate the T4 and continue T3 only, which my naturopath approved.  She continued to prescribe whatever dose of T3 which worked best work for me, even after I began taking 75 mcg of my T3 drug (generic liothyronine) in 3 divided 2 5mcg doses.  I continued that dose for 18 months while experiencing neither hyperthyroid nor hypothyroid symptoms. I also had no cold during the 2 of the 3 years I was on higher t3 doses.
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 However, after my ND saw my DEXA scan results, she recommended bone building supplements, biodentical HRT and a much lower dose of my T3 only drug. Her last recommendation was based on research that suggested that TSH is related to bone density.  Unfortunately, taking T3 only supplements often suppresses TSH, even when the T3 dose is very low.  Nevertheless, my ND recommended that I lower my T3 dose enough to raise my TSH to a 'normal' range, even though the doctor who oversees my ND does not believe TSH is an effective measure of thyroid function.


So during a few weeks in August 2014 I reduced my total T3 dose from 75 mcg to 37.5 mcg (still 3 divided doses).  That lower dose was where I started with T3 only in January 2012 and did well for over 6 weeks before hypothyroid symptoms returned.  After a month on 37.5 mcg T3 only, I retested my thyroid hormones (free t3, free t4, tsh).  Unfortunately, my tsh was still lower than normal, although a bit higher after a month of the lower t3 dose.


Then my ND asked me to reduce my t3 dose to 25 mcg and retest after a month on that dose.  At 25 mcg daily I acquired my first cold in over 2 years. That cold turned into a severe sinus infection, from which I finally recovered over 3 weeks later. Also I experienced all my typical hypothyroid symptoms (feeling cold, tired and constipated all the time, as well as being vulnerable to respiratory infections and having fragile fingernails that tore, split and developed vertical ridges).  My next blood tests at that 25 mcg level showed that my free t4 was still very low (I stopped taking t4 in early 2012), my tsh was still below normal although slightly higher and my free t3 was now below normal range.  My ND blamed the low ft3 result on the timing of the dose preceding the test (not close enough to the blood draw) and insisted I again reduce my t3 dose to 15 mcg total daily for at least 6 weeks and retest.  She sent me home with a prescription for that amount and a lab test order.




I initially reduced my dose to 18.5 mcg total daily t3 for awhile. However, I was so hypothyroid at that dose (and had found so many articles dismissing the value of tsh testing for free t3 levels), that I talked to my primary care doctor about my hypothyroid symptoms. She encouraged me to return to my previous 25 mcg total daily and gave me a prescription for 37.5 total daily t3 (6 months worth). After she talked to my naturopath, my PCP said I needed to see an endocrinologist for further thyroid treatment.  Unfortunately all endocrinologists in my 'network' required history from my previous/prescribing doctor (my naturopath) before they would see me. Because I couldn't get an appointment until the following year, I had time to change health care plans and find an endocrinologist who actually prescribed t3 medication.


I found online a list of doctors in my area who prescribed t3 supplements. One of those doctors actually practiced at a clinic covered by my plan.  However, he would no longer see medicare patients (perhaps  because medicare plans don't pay as much as private insurance plans). So I was referred to another endocrinologist in his clinic. The first appointment with that endocrinologist seemed to go well.  He ordered many blood tests, a 24 hr urine collection,  and a one month prescription for my current level of t3 supplement.  Rather than discuss my thyroid supplements, he focussed on testing me for hypoparathyroid problems which could explain my osteoporosis.  I already told him about my years of undiagnosed celiac disease and treatments for gut symptoms which exacerbated bone loss.


When all my hypoparathyroid tests showed normal levels, that endo strongly encouraged me to begain taking Forteo for osteoporosis,  despite resasearch which showed that drug causes bone cancer. Also the benefits of Forteo on increased bone density are only temporary.  I agreed to consider Forteo until I discovered it contained mannitol, to which I react with cramps, bloating and diarrhea, as I also react to sorbitol, xylitol, etc. So I called his office and reported my discovery and declined to take Forteo.  That endocrinologist also did not like my thyroid blood test results.  However, he never tested free t3, but preferred to test total t3, which says nothing about the amount of  biologically available thyroid.  He wouldn't even listen to my experience and research about t3 medication. I never saw him again.


Next I saw a new PCP, whom my previous naturopath had recommended as a more naturopathic medical doctor. She was affiliated with the same clinic as the endocrinologist whom originally I wanted to see.  That PCP seem very caring and attentive to my history about celiac disease, food allergies, and prescribed meds which influenced my osteoporosis. She even physically examined me (listened to my heart, lungs, intestines, etc.), which my previous PCP had never done. However, when I returned for a followup visit to discuss my thyroid history and medication, she said that she must defer to the endocrinologists in her clinic, because she was only a 'family medicine' doctor.  I gave her a handful of studies about T3 supplement use and problems with using TSH tests.  However, she recommend I talk to another endocrinologist.  I told her that I had wanted to see an endo in her clinic who supposedly prescribed T3 but he wouldn't see medicare patients.  So she agreed to call him and talk about my history. She later called me to say that he recommended I cut my T3 and add a T4 supplement in order to raise my TSH levels.  However, I had already tried T4 plus T3 supplements for over a year.  When my T3 levels were high enough to eliminate hypothyroid symptoms, even while taking some T4, my TSH was suppressed.  Been there, done that ...


My last hope was a new naturopath, who supposedly prescibed T3 supplements.  I had tried seeing traditional docs within my health insurance 'network', but the PCPs all deferred to endocrinologists who were focussed only on TSH test results, not my hypothyroid symptoms or lack thereof.  I wanted to avoid paying out of pocket for healthcare, because I already paid for my medicare healthcare plan.  However, I previously only received accurate diagnoses and treatment from  naturopaths.  Traditional doctors had misdiagnosed or discounted my symptoms of celiac disease, food allergies, hypothyroidism and gut infections. 


The new naturopath listened to my history and current osteoporosis treatment approach (nutritional and bio HRT) as well as treatment for hypothyroidism (T3 only).  I left her office with a prescription for my current level of T3 and 3 refills (enough for a one year supply).  She encouraged me to consider taking a T4 drug to raise my TSH level.  However, after reviewing my history with T4 and T3 combinations, I noticed that my TSH level was suppressed even when taking T3 and T4 drugs.  So I called her office to remind the naturopath to review blood test results from the year I was on both T4 and T3.  Adding T4 to my current T3 dose would just further decrease my TSH.  My TSH level had only been normal when my T3 was too low to eliminate hypothyroid symptoms.  That naturopath never called me back.  Nevertheless I have enough prescriptions for about 16 months of T3 only.  I really don't know what a suppressed TSH will do to my bone density.  However, I'll get another DEXA in September or October and find out.







4 comments:

Claudi said...

Hi Su... I was reading my old blog entries from 2009 and back then you left comments for me and that made me think of you... I will blog again to help me stay on track
btw thanks for the Christmas card
greetings from Nova Scotia

Suedior said...

Hi Sue,

My daughter was diagnosed with Celiac Disease last week and her TPO came positive for a thyroid Autoimmune. She hasn't seen a endo specialist yet. I have several related symptoms which includes Chronic Uricaria and a longer list and so does my other daughter. When doctors saw we were both negative for Celiac "Blood Only" they just close the book and say we are fine. Which I know is not true. What doctor are you seeing in the Seattle area? Because we live in the same area.

Suedior said...

My daughter was recently diagnosed with Celiac and her TPO came in positive for a Thyroid Autoimmune. We have not seen a endo. doctor yet. Both myself and my other daughter were negative for Celiac "Blood Only" but are symptomatic for either disease which includes Chronic Urticaria among several other issues. Which doctor do you go to, because we are in the Seattle area as well? I would have sent you a private messsage, but didn't see an option here.

sue said...

For celiac disease diagnosis I used Enterolab stool tests, which I ordered online and sent back test samples via Airborne Express. After eliminating gluten and dairy (for which I tested positive), I still had gut symptoms. So I went to Dr. Stephen Wangen at the IBS treatment center, who accepted the Elab results and gave me an ELISA (blood test) for other possible allergies (of which I was diagnosed with 4 more for a total of 7 allergies including Elab results for gluten, dairy and later soy).

Dr. Wangen didn't recognize my other symptoms as hypothyroid. So I found another naturopath (Wendy Ellis in North Seattle) who tested my TSH and free T4,which were elevated and below average respectively. However 4 months of T4 supplement did nothing for my symptoms. So as I describe in the above post, I eventually went on T3 only after a Ft3 test showed I was waaay below normal on t3, despite months of taking a t4 supplement. T3 worked well UNTIL that naturopath changed her mind about TSH (which is usually suppressed while on adequate levels of t3). She wanted me to keep lowering my T3 drug until the TSH was low normal. However low levels of T3 brought back my symptoms (low immunity, fatigue, low b/p, low pulse, etc.) My naturopath was rigidly set on raising my tsh, despite my symptoms. So I began the search described in the above post, which led to another naturopath, Chelsea Gordon in Mill Creek. I just today did blood tests for TSH, ft4, and ft3. I know for sure that the TSH and Ft4 will be suppressed and ft3 will be in normal range. We'll see how this naturopath responds. I hope she just renews my prescription for t3 only, but after my previous experiences with clueless endocrinologists, PCPs and naturopaths, I won't be surprised by anything. Getting adequate diagnoses and treatment for Hashimoto's thyroiditis is challenging to say the least.