This post is a brief outline of my physical “Thyroid Therapy Transformation,” a glimpse into my personal life and how symptoms and body composition changed in response to changes in thyroid therapy and diet.
You can see my favorite colors are pinks and blues. And it also shows many hairstyle transformations, ha ha!
This post will be supplemented later with more detail on my laboratory results in the latter phases of therapy.
The main points are that
- Thyroid therapy changes might not change your body as much as many people assume they will.
- Diet changes can make a huge difference in some people in spite of significant thyroid therapy struggles.
- Even if you lose weight while on thyroid therapy, your health may be in danger if your FT3 is chronically low.
I enjoyed getting thinner. But ultimately, health matters more than body shape, and sufficient FT3 is necessary for health.
2001 photo. Pre-diagnosis, before therapy
Pre-diagnosis I was living with severe hypothyroidism, with fatigue and brain fog. I was diagnosed in 2003 by my TSH alone.
I’m not a Hashimoto’s patient. No goiter (no thyroid swelling) despite a TSH of >150 at diagnosis was an early sign that my hypothyroidism was either Blocking Hypothyroidism or Atrophic Thryoiditis (thyroid gland atrophy), but most doctors don’t know this.
Atrophic thyroiditis is an autoimmune thyroid disease caused by TBAb antibody (TSH receptor-blocking antibody) and other autoimmune factors, not by the TPO antibody found in Hashimoto’s. I’ve always had normal TPOAb over 4 lab tests since I was first tested in 2016.
My form of hypothyroidism is different and more rare than Hashimoto’s.
2005, 2011 photos. During LT4 thyroid therapy
As you can see, my body composition didn’t change much from before to during Synthroid (LT4) monotherapy. I just got more and more overweight.
My TSH may have been normalized, but nothing changed in the body composition department.
I chose T-shirt images to show the weight gain in my arms. Around my neck were “rings” — skin creases that were caused by fat.
I didn’t have any hair loss, ever. I’ve always had a very thick head of curly hair. Dryish skin, yes. Cold intolerance.
I was diagnosed with sleep apnea within a year after LT4 therapy began. My husband witnessed this as loud snoring and a sudden stop in breathing, then gasping for air. I refused CPAP therapy and just tried to sleep on my side instead of my back, which helped.
Mentally, I struggled with slow cognition — for example, finding myself rewriting the same paragraph for an hour, not being able to complete the mental process.
Emotionally, I would find that even missing 1 Synthroid dose would cause uncontrollable crying 3 days later for no reason, with no precipitating event in my life other than the missed dose. I was likely often on the edge of hypothyroidism in my dosage.
The year 2011 was my heaviest, at around 186 lbs and size 16+ petite (image with the hat on).
I am 5 feet 2 inches tall (157.48 cm), and my healthier weight in 2017 was around 115 lbs (52 kg). I have rather thick and heavy bones.
You can see that my body shows weight gain from fat, but not the shapes you see in the “myxedema” (non-pitting edema) caused by TSH-receptor overstimulation in Hashimoto’s or Graves’ disease.
Throughout my LT4 therapy, I had high total / LDL cholesterol, probably because my T3 was low, despite my high.
2014 photo. LT4 therapy plus Gluten free LCHF diet
Finally, my mental and physical health changed with a major diet change toward Low Carb High Fat (LCHF) and Gluten-free starting in July 2012.
I made this transition even while I was on TSH-normalized Synthroid monotherapy and likely had a low-normal FT3 and high FT4. Although I have no data but TSH for some tests (they didn’t test my FT3 and FT4 due to TSH-reflex testing policies), an abnormally low FT3:FT4 ratio of 0.135-0.15 pmol/L later revealed itself as a continuous sign of poor metabolism at various FT4 levels.
My excess body fat melted off mostly over 12 months and my new shape was achieved by Summer 2013 and maintained thereafter, alongside the new “way of eating.” I generally followed websites like Mark’s Daily Apple and Diet Doctor for tips.
My diet was NOT a strict ketogenic diet with less than 50g of carbs per day. This is important. Some people with hypothyroidism find that ketosis lowers FT3 levels, affects adrenal health, and can cause a decline in health. I even purchased a breathalyzer that could measure ketones in breath. I was rarely in ketosis. I was borderline.
My diet took a lot of effort to change shopping habits and cooking, but it was so delicious and fulfilling! I did not cut calories at all. I ate to satiety a lot of vegetables and high quality fats and meats.
My husband also enjoyed the food. In fact, he had always struggled with chronic headaches ever since I knew him. A major motivator for me, showing that our diet was healthy for both of us was seeing him go from “80% life is a headache” to “80% of life is headache free.” Losing the gluten was the biggest benefit for his health, but he also lost his little pot belly on the LCHF.
I did not add any extra physical activity at all. My life is rather sedentary. I’m a research professor, so I spend most of my time in front of a computer when I’m not teaching or walking around campus. I have ankylosing spondylitis, a type of autoimmune arthritis, which in my case (unlike others), it often gets worse with exercise, so I can’t do vigorous cardio without consequences.
At that point, I thought I could live well on Synthroid for the rest of my life.
I was wrong.
A healthy diet and weight loss is not enough to defend health. During thyroid therapy, T3 sufficiency is more fundamental to health.
What I currently theorize was a TSH receptor-blocking antibody flare hit me in Fall 2013. In conjunction with a dose decrease, it sucked Free T3 out of me while making my TSH fluctuate randomly above reference. The TSH had no logical or stable relationship to my FT4 or FT3 levels (as you’ll see in a future post), likely because of the influence of TSH-receptor antibodies on the pituitary’s TSH ultrashort feedback loop.
Despite my low FT3, a severe illness was not yet interfering with thyroid hormone metabolism. My RT3 was found to be normal at 18 (ref 8-25) before I became ill, and this RT3 is to be expected with a FT4 around the same position in its range.
After almost 3 years of chronic low T3 (2013-2016) in which I think only my healthy diet sustained me, I had a health crisis in Jan-March 2016 that drove me to emergency 3 times in 3 months.
In From January to March 2016, my low FT3 malingered, falling between 2.9 and 3.4 (3.5-6.5), along with failing health. Finally, this was clearly an illness that affected my thyroid hormone metabolism, because it drove up my RT3 to 33 (range 8-25) while FT4 was 22 (10-25). My TSH was abnormally high for my high-normal thyroid hormone level, at 6.17, despite being on a slightly higher dose than when my TSH was 0.07 back in July 2013. Physicians repeatedly dismissed the rapid decline in my health.
It seems like I had acquired a mysterious adverse cardiovascular response to T4 dosing, possibly microvascular spasms due to endothelial dysfunction, which was not suspected at the time. It was triggered by a brief dose increase to 137 mcg, which I stopped after a few days. Thereafter, 2-week phases of partial relief from cardio torture were obtained by LT4 dose decreases that inevitably also made me more symptomatically hypothyroid. The random daily vascular spasms stayed with me day and night despite lowering my T4 dose step by step from 125 to 100.
I didn’t want to become more and more hypothyroid, and my TSH was over range, but tiny LT4 dose increases sent me to hospital with horrible symptoms. I feared an impending stroke or heart attack. My symptoms felt like what is now being described as cardiac symptoms more common among women than men. I had no T3 in my arsenal yet, so all I could do was underdose T4 to prevent distress. I was stuck.
2017. T3 monotherapy since Apr 2016
Fortunately I found a compassionate doctor who was willing to dose me on T3, but only after my conventional tests came back showing no major dysfunctions in my cardio plumbing or electrical system.
A careful transition to LT3 monotherapy (Cytomel) helped me recover my health. I used Paul Robinson’s T3 books to help me make the switch safely.
No, I did not lose more weight by transitioning to T3 mono. But I didn’t need to lose more weight anyway. I needed health!
My cardiovascular “spasms” significantly decreased on my first dose of 5mcg of T3, and eventually went away as I lowered FT4 and increased FT3 levels every 2 weeks.
I do not seem to have any adverse effects from T3 dosing. My adrenals must be capable of keeping up with “increased tissue demand for cortisol” mentioned in T3 product monographs. I haven’t been interested in measuring cortisol.
After 1 year of stabilizing on T3 only, I tried to reintegrate T4 hormone via desiccated thyroid (NDT), but that attempt failed. I was still part way through the transition on NDT + T3 when I had bizarre lab results with FT3, FT4 and TSH all below range (a result that looks like central hypothyroidism). First I increased T3 dosing and was fine. But a return of the same body-jolting cardio symptoms I had with T4 mono occurred 1 week after I increased the NDT dose. I seem to have acquired an intolerance to T4 dosing above a certain threshold, and it’s not worth the risk to explore it.
So, I went back to LT3 monotherapy, and my vascular spasm symptoms subsided over 2 weeks.
All the while, I continued my LCHF Gluten-free diet.
I’ve currently reintegrated more carbohydrates (potatoes, chocolate, some gluten-free treats).
I’ve also gained the “COV1D 15”, the extra 15 pounds or so of padding that comes from less walking around.
That means you can still GAIN weight while on T3 monotherapy!
I’m still powered by T3 monotherapy, though I do not wish to promote it to everyone because it is unnecessary for most and can be very challenging to manage. My body changes its rate of T3 metabolism several times per year, and T3 losses seem to be higher in winter. I must adjust dosing based on heart rate data, body temperature data, and measuring FT3 levels 12 hours post-dose, to prevent hypo or hyper.
I still have sleep apnea symptoms when I sleep on my back, but it tends to be less often and less severe.
In the past 2 years I developed complete arm & leg hair loss, which is not troublesome at all, since I don’t need to shave legs in summer! All head and trunk hair is normal. It’s not easy to find out why it happened — it could well be autoimmune / genetic, since my mom has the same arm/leg hair loss and she is mildly undertreated on NDT.
Someday, if another health crisis arrives, I may try a 2nd time to crawl back to T4-T3 combo, but currently I’m healthy and stable, so my approach is, “if it ain’t broke, don’t fix it.”
To read more of what I’ve already posted publicly about my thyroid therapy journey, read “Case study: What my life is like in the T3-monotherapy wheelchair”