MY TSH Zis stuck at 0.001 and has not shifted since my diagnosis with Graves and hyperthyroidism in March 2021. I was out in block and replace regime in Jan and it has not moved. My endo is now trying “shock” my pituitary into life and has cut my levithyroxine to 50mg despite me feeling very good on 100mg.
I am worried about such a low dose when I have felt good in 100mg. T4 and T3 at the low ends of ranges.
Anyone else have this issue?
Hello Ponkysue :
This can happen with Graves disease and there is nothing you can do about it and simply the nature of the disease.
Looking for a TSH to respond is not the answer.
Managing your T3 and T4 levels to keep you well is the way forward and titrating your AT medication as another means of buying time while your antibodies are raging and trying to cause havoc with your thyroid.
Graves disease antibodies ' sit on ' the TSH receptors driving down the TSH reading and thereby driving up your T3 nd T4 levels and why you initially became unwell and needed medical help.
These antibodies do not disappear, and they are ' stuck on ' your TSH receptors :
These antibodies may or may not ever leave your blood stream and your TSH never recover it's so called " accepted function " : and why it is known that the TSH is Graves patients is a very unreliable measure of anything.
The AT drug is prescribed to fully suppress and block your own thyroid hormone production through this first phase of the disease and to negate the antibody interference.
The T4 is added back in at a measured dose so to keep your T3 and T4 up at a comfortable levels so you don't fall to far through the T3 and T4 ranges and experience the equally disabling symptoms of hypothyroidism.
Do you also get your ferritin, folate, B12 and vitamin D run as when metabolism isn't running well your body will have trouble extracting key nutrients from your food and you need to keep your core strength strong and solid to support your through this AI attack on your body.
Can't remember if I've sent this to you before but I learnt much from elaine-moore.com and think it the most well rounded of all the research sites I found especially with regard to the reasons why this may have happened and what you can do for yourself and to maybe reassess your life / work balance and find things you enjoy and ways to relax.
Graves is a poorly understood and badly treated AI disease - said to be driven by stress and anxiety .
Mainstream medical have no understanding nor control of the antibody interaction - understanding your own triggers, and why your immune system was triggered may help your understanding :
Your thyroid is the victim in all this and not the cause -
The cause is your immune system attacking your body :
What are your FT4 & FT3?
Remind your endo that deliberately making levels edge to hypothyroid will not only make you feel unwell but could adversely affect TED.
“Shocking” approach is terrible idea. Adjustments of more than 25mcg of levo is also very unkind.
Increments upwards are always 25mcg daily at a time and 6 weeks between adjustments . Doctors don’t force the TSH to drop quickly when it’s high. It takes time for TSH to respond & altering levels quickly can make you feel unwell.
They seem to not apply same logic to dropping levels. Very high levels are dangerous but when in nearer to right range there’s no reason for this.
Were you diagnosed quickly or possibly hyperthyroid for a prolonged time?
Being hyper for a while means the normal feedback loop is down regulated and your TSH would stay sluggish and low in response to normal / low levels.
I had levels kept low for a few months (FT4 - 40-30% & FT3 -15-10% FT3) my TSH hardly lifted. It’s never been in range.
Reducing the dose for a short period in an attempt to get the pituitary to respond is reasonable but I suspect it will not work. TSH binds to receptors in the thyroid causing it to make and secrete thyroid hormone. The pituitary also has TSH receptors and by acting on these receptors TSH can reduce pituitary secretion of TSH by a ‘paracrine’ mechanism.
Graves’ is caused by TSH receptor antibodies (TRAb), antibodies that mimic TSH. Just like TSH these antibodies bind to TSH receptors and so stimulate thyroidal secretion and suppress TSH secretion from the pituitary. So, it is quite likely that your TSH remains low because you still have high levels of TRAb.
It's very common. The response of TSH levels to changes is very slow and might not happen at all. 6 months would often not be a long enough period. It's because your system has become hard-wired and to reverse it takes time.
TSH going up, normal T3
TSH going down instead of up with lowering of levothyroxine
TSH going up and down
Why is my thyroid level going up but tsh staying high? 
Well guys my tsh is going back up… again. 
