Graves Disease - my experience after 20 years

I was diagnosed with Graves disease at the age of 21. I had RAI to nuke my thyroid and end up on thyroid HRT. I probably regret it. Here, I explain why.

My own background with graves

I'm a numbers man, so I'm going to put a number on it:
I would estimate that grave's disease has reduced my quality of life by 20% and will continue to do so until the day I die.
Thyroid HRT is NOT and will never be the same as circadian rhythmic produced thyroid hormones caused by natural TSH (thyroid stimulating hormone). Exogenous T4 will give you a smooth, constant level, whilst it should peak at night and the morning and taper towards the end of the day.

I write this as you may wish to think twice before having RAI or a thyroidectomy. I am documenting my experience with this nasty autoimmune disease having had it for 20 years. A male 21 year old is an extremely unlikely cohort to receive a Graves diagnosis.

I lived with graves and ATDs (Anti thyroid drugs) for 10 years, and this worked OK - mostly. The reason I had RAI was because eventually both carbimazole and propylthiouracil gave me mild neutropenia. One day I was admitted to hospital and put in a quarantine unit unable to shower for an entire week with close to 0 neutrophils. At that point, I didn't have many choices left except to nuke the thyroid with RAI and start HRT.

HRT for thyroid replacement is tricky and, if you look around the thyroid forums, many seem to agree. There are countless reasons why exogenous (externally taken) thyroid hormone will not "feel" the same as endogenous (naturally produced). Exogenous hormone replacement will never match the natural release caused by TSH to match the natural human circadian rhythm. This is another reason why T3 with its short half life complicates the replacement protocols.

When you have your thyroid removed, you will need continual monitoring. I have never managed to achieve a perfectly stable dosage. Things such as activity level and supplements seem to affect it, and periods of feeling good and bad are inevitable.

T3 & T4 vs T4 monotherapy

If you're a graves disease patient and have spent any significant time on thyroid forums, you will have noticed the sheer number of patients who insist T4 monotherapy does not provide satisfactory relief. You will also find those who claim taking T3 provides them so much relief that it feels like taking XTC - even though their blood tests show T3 is well in range.

Placebo? Most probably. There are a lot of hypochondriacs on thyroid forums - I was one of them, and I'm not ashamed to admit it. This autoimmune disease screws with your head.

So, there have been many times in my life where I carry T3 in my wallet, and when I get that dreaded lead-leg feeling I would drop 6.25mcg and an hour later feel like I've taken 200mg caffeine - back on my feet. Coincidence? Possibly.

There are not enough studies to support the anecdotal relief provided by sporadic usage of T3. It is equally likely that taking T3 simply gets you "high" as it stimulates your neurochemistry, particuarly noradrenaline.

There have been periods in my life where I have had that dreadful pre-diabetic type feeling of extreme lethargy which is recovered by T3 - but, who is to know whether this is genuine replacement of much needed T3, or is it simply drug abuse?

So, many insist they do not feel well on T4 (levothyroxine) alone, and they need to supplement with additional T3. Personally, after finally finding a very good endocrinologist, I now prefer to use T4 only to put T4 above range, TSH near bottom, and let the T4 convert to T3 naturally. Exogenous usage of T3 for me screws this all up and puts me back to square one with calibrating my tests.

Carrying around T3 made me feel like a junkie, anyway. And it's quite possible that I was - PRN usage of T3 does get you high, after all.

If I didn't get neutropaenia, I would have been happier sticking to ATDs. Most of my belief is based on the readings of this niche book on graves disease and why RAI may not be ideal for you

There are a lot of quacks - professional doctors / endos - all over the internet when it comes to thyroid conditions. They suggest gluten free (without a celiac diagnosis), micromanaging T3 dosages, testing reverse T3, testing DHEA / cortisol / adrenals, T4 » T3 conversion rates etc. Forget that. You'll be pissing in the wind for years with all that. My advice after 2 decades? Get a good endo and keep it simple.

Personally I need 175mcg T4 QD, with occassional variance depending on compliance, stress etc.