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TSH never reflects thyroid status?

My health has been terrible (essentially incapacitated for the past 8 years) but the only consistently strange diagnostics are with regards to thyroid status. I've had all manner of strange diagnostic results, but other than thyroid stuff, it's never consistently weird.
I almost never have TSH, T3 and T4 all within' reference range simultaneously. Normally, my TSH will be high (10-40x above reference range) while my T4 will be normal, or slightly above reference range, while T3 is usually normal or slightly high. If I take enough thyroid replacement to bring TSH into reference, my T3 will be at the top or over reference slightly, while my T4 may be as high as 2x above reference.
But, that's not always consistent. Occasionally my TSH will drop below reference, while my T4 will also remain below reference, and again, the T3 is usually pretty normal.

I've been to well over 80 GPs and specialists and no one has any clue whats going on (though of course, most will no admit they don't know, and will insist I increase or decrease my thyroid meds, and when that fails to bring any of the numbers into reference range, they simply stop letting me book appointments). Thus far, only 3 or 4 of my doctors (2 endos, and internist, and an NP) have admit they do not understand what is going on, but that it is extremely strange. All except my NP have given up.

Currently, my 24h urine collection showed 2.7L total urine production (high) along with elevated urine creatinine (above reference range) and high (but within' reference range) serum creatinine. Also below reference Vitamin D, normal metanephrines and catacholamines, high b12 (above reference), TSH 98.4, low-normal T3, and low T4 (below reference). This is after INCREASING my thyroid replacement slightly, whereas last month my TSH was 56, T3 was normal, and T4 was at low end of normal.

I have every symptom of everything. I spent years seriously considering I might simply be crazy, but diagnostics prove something is very wrong. I also consistently have either extremely high or extremely low white blood cell count, and every time I end up in the ER, we fine low sodium.

My gut constantly hurts (dull ache, bloating, feeling empty but distended, sharp stabbing, all alternating), I have several partial disc herniations which seem to simply come and go depending on how much I urinate (the more I pee, the more likely my back/neck will screw off and I'll be stuck in bed for several weeks), I usually have zero energy despite LOOKING quite healthy (I can rarely go for a short walk), but once every few months I'll have a day or so where I feel fantastic, I can run, lift weights, whatever, and occasionally I'll have an entire week where my gut isn't killing me.

Thoughts?
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Avatar universal
When taking thyroid med, TSH is almost a wasted test.  TSH should never be used to determine thyroid medication dosage.  A good thyroid doctor will treat a hypothyroid patient clinically, by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being influenced by resultant TSH levels.  Symptom relief should be all important, not just test results.  

So please start over by listing symptoms you have when your Free T4 and Free T3 are near the low end of the range.  Also, if you have ever had both in the upper half of their ranges, how were you feeling at that time, and what symptoms did you have, if any.  

Please, to go along with that info, post your thyroid test results, along with reference ranges shown on the lab reports that represent the current levels and also worst levels previously.  Also, post your Vitamin D and B12 and ferritin, if tested.  We also need to know what thyroid med and dosage you were on at the time of both sets of test results.    Are you taking anything other than thyroid med?  If so, please list those along with dosages.
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