Follow-Up: An Experiment of One

If you read my October 2011 post, An Experiment of One, I said I would follow up with the post when I got my next thyroid labs drawn.

I got my results back two weeks ago. TSH 2.29, FT4 0.89, FT3 0.99. I've been symptomatic since around mid-November.

Afternoon fatigue that starts around 11 am. Feeling cold all the time. Difficulty concentrating and multitasking. Dry, dry skin, worse than usual for this time of year and our climate. Weight re-gain of 4 pounds, after I worked hard to lose it earlier this fall, despite no change in diet and increased running mileage. Total cholesterol 252, up from 199 last year at TSH of 1.0.

I'm adding back the skipped doses of Levoxyl and see where that takes me. I'll re-test in about 4 months if I do feel better, also recheck cholesterol. If I don't feel better within 12 weeks I won't wait, I will ask to re-check thyroid and see if a dose adjustment is necessary.

I did have another thyroid ultrasound and the nodule in question has shrunk further, which is good news. My thyroid appears shrunken too, without a lot of blood flow. It's not very functional, which is no surprise, this many years into Hashimoto's. I don't know if this means I am less likely to have flare-ups of thyroiditis now, but that would be a nice benefit of a non-functional thyroid.

I'd like to ask an endocrinologist these questions.

Another good source of information

Columbia University Medical Center has an excellent website with a variety of health resources.
http://www.cumc.columbia.edu/dept/thyroid/index.html

New Comprehensive Article on Hashimoto's Thyroiditis

An excellent updated (November 2011) article on what is known about Hashimoto's thyroiditis. Written by endocrinologists, there's a lot of material here, everything from diagnosing, to symptomology, to treating, to research, and lots of good stuff in between.

It's a good update on what is known now and recommendations for treatment. The only comment I would make, from personal experience, is that there is still an overreliance on lab values, and failure to listen to patient symptoms.

The authors state that only one of nine studies showed an advantage to adding T3 to levothyroxine. That is where I think endocrinologists need to be willing to open their minds and give it a try. If the patient is still reporting symptoms despite a "normal" TSH and Free T4, in the absence of cardiac problems, a little trial of T3 might be a good idea! They state that T3 is more popular with patients than with physicians.

Hmmm. I wonder why that is?

Addition of a little T3 can require cutting back on the amount of levothyroxine, but if it works for the patient and doesn't cause any abnormal labs or symptoms, hello...

I'm not saying T3 is for everyone, or the magic answer, but quality of life is a big issue with thyroid patients. Endocrinologists need to remember they are treating PEOPLE. People who have lives, and don't feel good when they are constantly plagued wth fatigue and brain fog.

If you're looking for an endocrinologist, do a little research. Find out if they have a genuine interest in thyroid disorders. Have they attended any conferences or participated in any research on thyroid diseases? How do they balance the patient's symptoms vs. lab values when treating?

If you're having problems getting back to feeling like your normal self, "come back in a year" is not the right answer.

Just food for thought.

An Experiment of One

Someone wrote me recently with questions about how their training might cause them to alter their medication dosages as they explore moving up to running ultra distances.

The question was: Will it change my medication dosage? Will I "use up" my medication?

That depends on how your pituitary gland/and or thyroid gland are working these days. For example, if you have Hashimoto's thyroiditis, you might experience fluctuations in your thyroid hormone levels frequently, necessitating dose changes. If your thyroid function (and pituitary function) are stable, you might not be needing to change doses.

I did an experiment myself, I kept close tabs on my thyroid function for the past 2 years with the help of my doctor. I was in the process of training for a double Badwater run, and I was wondering the same thing myself. Normally I'm a 50ish mile a week runner. For my Badwater double, I was running 120 mile weeks. I also ran two other long ultras in the 7 months leading up to Badwater, of 114 and 151 miles. In the year before that I ran several 100 milers and multiple long training runs up to 70 miles.

During the entire 19 month period of time my thyroid function and medication dose did not fluctuate at all, except when I intentionally played with the medication. Here's what I did: I knew that being hyperthyroid in the heat of Death Valley in the summer would not be good. I have always felt at my best with a TSH of around 1. At the beginning of my training my TSH was 0.6. I felt this might be too much on the hyperthyroid end of things for what I was expecting of my body.

I did an experiment, and I told my doctor what I was doing. I skipped my Levoxyl (also known as levothyroxine/Synthroid/T4) once a week for 3 months, then re-tested. My TSH went up to 2.4. I added the missing Levoxyl back twice a month, so that I was only skipping my Levoxyl every other week- I did it on alternating Tuesdays, the same days that we have our recyclables picked up, which helped me remember. After 3 months on this, I tested again, in May, two months before the race, which would give me time to make any necessary adjustments.

My TSH was exactly 1.0. Pretty good, huh?

I went to Badwater, got a PR in the race, successfully did my double crossing, with no problems at all.

And three months later, as of today, I have taken an 8 week break from running, cut my total exercise and workout time to about one-third of what I was doing over the past two years, and I still skip the every other week dose of Levoxyl. I can't tell that anything has changed, except so far I've lost 4 pounds. I have a feeling it has more to do with being less exhausted from training than it does with my thyroid. I'll follow up with more on this soon.I'm going for my annual physical exam in a few weeks and will get my labs drawn again, so I'll let you know.

That's my experiment. Don't try this at home without discussing it first with the same doctor who prescribes the medication.