T3 monotherapy attempt #2 (2023): Mission abortedNotes in case I try this again...
Trial abandoned after 5 months of living hell - probably the worst year of my life.
(13th April 2023 to 28th September 2023)
The sawtooth of T3's pharmacology profile and short half life is harsh. I kept making so many radical mistakes due to being drunk from sleep deprivation. The insomnia became untenable. The elevated cortisol was too hard to diagnose. I felt I was on a time crisis before I went insane. I set a deadline, failed, and pulled the plug.
Being severely sleep deprived also caused me to lose visibility of symptoms, and also caused severe behavioural issues and me to eventually become reckless with dosage out of sheer frustration: Total frustration after failing to sleep, throwing hands in the air, saying "fuck it" and trying to power through pain with dosage escalation. I lost my patience. I was not prepared to suffer anymore when I had my levels wrong. Living in a state of thyrotoxicosis or undermedication results in a quality of life of precisely zero.
After month after month of battling this, I threw in the towel.
Why did I start this?
- Simply: I lived with Graves disease since the age of 21. I eventually needed a thyroidectomy due to becoming severely neutropenic from a reaction to anti thyroid drugs. My life took a serious downturn after I had RAI (Radioactive Iodine - complete ablation of the thyroid gland)
- I genuinely believed that the subsequent depression, social withdrawal, anhedonia, mood swings, and unpredictable lethargy (which often left me house bound) was a result of me selling the company and having "finished life" with nothing else left for me to do. It was only when I began intense training again - experiencing horrible exercise intolerance, becoming sofa ridden inexplicably - that I realised how intensely ill I was underneath it all. The heavy legs - my most hated symptom (other than the depression) - was no longer a tenable symptom. Life is barely worth living when you cannot predict if you will be able to walk reliably or not on any given day.
- Every single "holiday" I have attempted since RAI has resulted in me flying home in tears (literally), from crippling insomnia and depression, leaving everyone else behind.
- I have been living with supraphysiological T4 but impaired T3 levels for years. All of my endocrinologists told me it was fine as it was in range. Ask a graves disease patient who has had a thyroidectomy or RAI and many will tell you the opposite. In range is NOT fine for many - for me it was a living horror movie.
- After RAI or thyroidectomy, the margin for error is close to zero. When I was previously simply hypothyroid, partial replacement was trivial - because the thyroid itself and the hormonal negative feedback loop simply picked up the slack if I was slightly out.
- Mental stability is my no.1 goal. I also wish to be able to walk reliably, but sleep reliably too. I want to be able to agree to social events then actually turn up. This sounds like I'm a charity case. It sounds melodramatic. But this disease has me by the balls. I accept my refusal to give up training exasperates my symptoms, but I am a type A personality all-or-nothing, go-big-or-go-home, black or white personality, and I don't want to change that. Success would be entirely absent from my life without persistent dedication. Even in the absence of disease and symptoms, I would still refuse to be Mr. Average in any aspect of my life and I would genuinely prefer to die trying than give up.
- NB. During the process I intentionally made myself hypo / hyper to concretely ascertain symptoms. This was reckless, and a health risk, but I am past caring. I need to learn to manage this disease and empower myself to deal with it for life.
This is basically how I felt the past 7 years of my life:
The good: Successes - what did I learn from this madness?
- Whilst in range: Complete remission of anhedonia, depression; regained lust for life after years of depression
- I am finally concrete in my opinion that I am not mentally ill (despite multiple historical diagnoses from psychiatrists: Bipolar disorder, ADHD, Major Depressive Disorder, Generalised Anxiety Disorder). It was just the thyroid hormones. Everything has been thyroid hormones. It was fine before RAI, all hell broke loose after. Even withdrawal from recreational drugs cannot reproduce the suffering of being extremely hyper/hypo. Remember: This shit ONLY started after RAI. I was not a mental nutcase before RAI.
- I have validated with a high level of confidence that my symptoms are not related to my other health conditions / medications
- I have become SIGNIFICANTLY more aware of my current hypo/hyper state. I have this disability for life. Thyroid dosage will never remain static, particularly with my bulk/cut fitness style of life. This will certainly benefit me long term.
The bad: Why did it fail?
Insomnia / Elevated Cortisol / Nocturia
- Derailed by crippling insomnia - very hard to discern symptoms / state whilst sleep deprived
- I thought I had it working, but I was sedating myself through elevated morning cortisol with sleeping meds
- Hypercortisolism - morning cortisol would not resolve (2 - 3 x upper range) irrespective of T3 dosage. I believe it probably needed to continue to go UP now to resolve it. Almost as soon as my background T4 became undetectable in serum, I developed a rough case of hypercortisolism with levels 2 to 3x upper limit upon waking. This coincided with torturing blanket insomnia - I was lucky to sleep 3 hours even with sedation most nights. Awoken by a feeling of panic and distress, with a feeling that I had been awoken by someone pouring a bucket of water over my head. This was followed most mornings by crying episodes and/or rage. This made me so frustrated I became reckless. My only respite during this period was wiping away tears whilst reading /r/insomnia and reading others talking about suicide and self harm and just knowing others are also at their wits end.
- Nocturia - the growth of visceral fat (Cortisol belly) became so severe that I was not only developing insulin resistance and destroying my physique (which is devestating for someone who prides themselves on their obsession with fitness and dietetics), but also finding it hard to urinate - I had to sit down and push down on my bladder to piss. That was living hell at night, especially whilst having to get up 3 - 10x per night from uncontrolled elevated blood sugar from the hypercortisolism. Even a strict ketogenic diet could not mitigate the hyperglycaemia and visceral fat growth whilst my levels were out.
- Fear of T3; fear of the "come up" manifesting as either euphoria or panic after each dosage change. Huge placebo effect of T3 makes pragmatic analysis challenging.
- General dislike for the sawtoothing peaks/valleys of T3 in serum. Fear of long term compliance issues. Fear of T3 long term availability issues ("WTF happens if I become incapacitated?")
- A refusal to stop training negated ability to use metrics such as heart rate etc as KPIs. It also intensified fatigue symptoms during periods of extreme exercise intolerance: "I can't get up the stairs without screaming my head off, it is so hard; I feel like I'm carrying an elephant. Is it a state of overtraining induced by training through illness, or just transient due to thyroid levels?"
Dislike of short acting T3 itself
- The suffering when T3 levels are too high or too low became untenable. Fear of being traumatised for life. Fear of destroying social relationships
- Sudden, overambitious cessation of sleeping tablets and SSRI caused mayhem - psychological symptoms / mood swings difficult to discern from T3 overdose/underdose
- 50mcg = HYPO for certain - cracking nails, depression, hair loss, water retention, inability to control blood glucose, and a need to "summon" energy. Blood sugar a total mess, body composition slowly degrading with a "thyroid belly" and visceral fat storage.
- 75mcg = probably about right, maybe even too little. Far better mental outlook, explosive energy, no depression but sometimes anxious, and perhaps a bit manic. 75 returned good blood results with the lowest cortisol numbers (T3 top end of range 12 hours post dose, TSH < 1, FT4 undetectable)
- >75mcg - I did not sustain any dosage higher than 75 for any decent period. I was frightened of the transient side effects. If I was not derailed by crippling sleep deprivation I would have persisted increasing the dosage to see if that reduced morning cortisol. I was convinced more T3 = more insomnia (based on the loose theory that T3 is stimulating, and the times in the past I have been in thyrotoxicosis I have completely lost the ability to sleep)
I will now revert to a standard T4/T3 "combo" therapy, with a good dosage of background T4 topped up with a small dosage of T3. My new found knowledge and experience will hopefully help me finally find a stable dosage and get my life back.
UPDATED: 30th September 2023
There are hundreds of symptoms lists to compare the two states - the symptoms appear to differ from person to person.
This is my *own personal list* of experienced symptoms whilst adjusting thyroid hormone levels. I developed this whilst attempting to use T3 as a monotherapy. T3 is the goldilocks hormone - unlike other hormones it cannot be either high or low or severe side effects occur.
In my opinion, it is exceedingly difficult to discern the state whilst afflicted.
Its short half life has put me in both states to the extreme - often hypo and hyper in the same day.T3 appears to take a number of days to fully propagate to all tissues. Serum levels after a dosage change do NOT indicate either hypo or hyper.It is possible to be hypo or hyper despite serum T3 levels being in range.
Severely hypothyroid (low T3)
Severely hyperthyroid (high T3)
It seems whilst hypo anxiety paradoxically presents itself
Social anxiety; phobia of strangers; withdrawn behaviour
Panic; fear; palpitations
Social anxiety; desire to be social but frightened - with an odd sense of shame from being euphoric like a drug addict
Heightened self awareness - obsession with what other people think
Mood / depression
Suicidal ideation; emotional lability
Unable to convince myself it is hormonal whilst in a hypo state
Psychosocial issues: lashing out at others
Self critique; ruminating thoughts; self hatred - “my life is a complete failure”
Anhedonia - complete loss of lust for life and interest in normal activities
Sense of loss / doom
Mania; overexcitement; inappropriate euphoria; overambitious decision making
ICDs (Impulse Control Disorders)
“Eventual” fatigue - initially when hyper, high energy, which slowly becomes physical exhaustion across a number of days
Initial euphoria when entering sweet spot - almost like happy pills
Euphoria normalises to being content but eventually moody then depression when hyperthyroid state persists
Extremely impulsive; manic; sense of urgency; panic attacks
Impatient - want everything done immediately - frustration at others who are slow
Sense of peril / fear
Ability to walk / stand / climb stairs
When extremely hypo, complete physical incapacitation
Unable to stay standing - 2000 steps per day is a war
Loss of energy appears to happen quickly - a transient symptom which occurs when entering a hypothyroid state
Hyperactive energy - hard to stop moving; hard to stop talking / typing
Eventually degrades to exhaustion after an extended period
Exhaustion is not transient - cannot be reproduced with a bolus dosage
Totally impaired; systemic - even training upper body causes lower body failure
Glycogen is easily stored; full appearance, BUT also hold abnormal subcutaneous water retention
A near total inability to store glycogen
Impaired - presents as stage 3 kidney disease
OK when hyper or euthyroid
Body composition / glycemic function
Predisposition to store visceral fat
Hyperglycemia - unpredictable pattern. Inappropriate sawtoothing of blood glucose (CGM). Either reduced insulin function or insulin resistance
Impaired glucose clearance
Hypoglycemia - possibly reactive
Impaired gastric motility
High fasting blood sugar after waking
*Possible* hyperglycemia - half life of insulin is reduced in body
Unsteady blood sugar, but lower than when hypo
LESS predisposition to store visceral fat
Accelerated gastric motility
Sleep / insomnia
Total inability to STAY asleep
Total inability to GET to sleep
Chubby cheeks - water retention and abnormal fat storage
Lean, drawn in, gaunt appearance - sucked in cheeks
Puffy, hooded, tired looking eyes
Eyes look too alert; staring appearance with thin eyelids
Nails / skin
Dry, peeling hands
Cracked, dry nails with white vertical lines
High Cortisol (hypercortisolism)
Can be elevated due to impaired cortisol clearance
Can be elevated due to T3 directly initiating inappropriate cortisol
It appears impossible to sleep in a state of hypercortisolism
Never experienced this side effect
Never experienced this side effect
Inability to “fire” mind-muscle connection
Muscular atrophy - elevated creatine kinase
Frequent urination - especially nocturia
Extreme - can be 10+ events per night
Resting heart rate
Typically lower, but when severely hypo can present as elevated
Present in both states
Present in both states
The heavy legs symptom is the trickiest KPI I had when dialling in my T3 monotherapy (I am an athlete and "road test" a walk every morning whilst I had a forced training break).
I want to give some input on that as I rarely find anyone else talking about it and it is very hard to google.... I hope it is of some value to someone later, YMMV ofc...
1) "Heavy legs" invariably happen when hypo, almost to the point of being unable to climb my own stairs. It incapacitates me so badly that I can barely manage 1500 steps in a single walk.
The other give away for hyPO for me is that when intense training even just the upper body, my LEGS go. To the point climbing the gym stairs is an all out war.
2) It also happens when hyPER. BUT, it is different. I believe it is due to mitochondrial degradation of some sort, perhaps the MCT8 transporters, because initially when hyper I am extremely energetic... in my road test I can do 45k steps (that's basically walking a marathon), but then I degrade over a period of days despite maintaining the same dosage... I can throw carnitine, coq10 at it, eventually I get to the point where standing in a supermarket queue is very, very hard. BUT that takes about a week or more to develop.
Aside from hyperglycemia (the other variable I consider paramount when trying to restore exercise tolerance, I use a CGM), and mood, libido etc, the heavy legs KPI took me months to figure out if hypo/hyper so I hope it helps someone else....
About Kishore Naib (Kit Naib)
Kishore founded the e-commerce company Watch Shop in 2007 and exited in 2014 after an acquisition by Watches of Switzerland at the age of 34. Watch Shop was a medium sized enterprise (£44 million sales) and was one of the UK's fasted growing companies, doubling turnover every year.
After leaving Watch Shop Kishore did a few coding projects but decided to follow his true and first passion: Lifting and bodybuilding.