How do you deal with ignorant doctors?!

I take NDT and have for the past seven years. I was originally prescribed Armour, then Erfa, but switched to Thai NDT because of the prohibitive cost of prescription NDT. I find Thyroid-S to work much better than both Armour and Erfa at a fraction of the cost.

The doctor who put me on NDT has no problems with my completely suppressed TSH (<0.01), but all other doctors do. Unfortunately, whenever I see a doctor for an unrelated matter, s/he always wants to have some labs done, and these always include the TSH (never the free Ts; one doctor told me "only the TSH matters when it comes to deciding if your Hashimoto's is adequately treated because if it's normal, then your free Ts will be normal as well and besides, we never measure free T3 as it is not as important as free T4").

Then, they invariably freak out when they see my TSH, and tell me to stop taking NDT immediately and go back on L-Thyroxine until my TSH normalises. My OB-Gyn recently told me that my TSH needs to be "anywhere in range"...

I am told I risk osteoporosis, heart problems, a goiter, and God knows what else because of my suppressed TSH. A GP told me last summer I was developing Graves' disease and would possibly require RAI...

I know they are wrong, but I find it very tiring to be constantly butting heads with ignorant doctors.

So I wanted to ask others in the same situation: how do you deal with doctors telling you to go off NDT and back on T4 after only seeing your TSH?

I spent a decade on T4 only without seeing much improvement, and feel so much better on NDT. There is no way I'm going back on T4 only, but I sometimes wonder if doctors can refuse to treat me if I won't do as they say...if they consider my TSH dangerous and believe it poses a serious risk to my health, can they tell me they won't treat me until I go back on T4 only and have a normal TSH...?

[Naomi8]

I have just moved to a new town & had TSH,FT3 & FT4 tested on the NHS.I have also done my own private Medicheck tests.

My bloods are where they should be,according to my knowledge gained on TUK,but because my TSH is below 1.0 & I am on NDT,my GP has referred me to the endo.I went through this in my last locality.That endo wanted me back on thyroxine & to take less than I had previously been on for 16 years,before I started adding T3.They do not relate to the patient,only the figures.If you say you aren't well on their protocol of thyroxine & their TSH range,they say it MUST be another cause making you unwell.

This is such a pain.

MY hashi's doesn't respond well to mental fatigue & stress not to mention the frustration of brick walls.Grrrr!!!

[Angel_of_the_North]

I think you can refuse to have TSH test done - you have to consent to tests. And of course there is no guarantee that your TSH would change on levo.

[Hidden in reply to Angel_of_the_North]

Maybe, but my TSH remained normal-low (0.5-1, ref 0.4-4.4) for years on levo. Of course, after so many years on NDT, there are no guarantees I guess that my TSH would normalise even if I went back on Levo...

[Hidden]

In a similar situation, I have never encountered that problem. Perhaps that's because I am bigger than them, maybe?

A sure way to shut them up would be for them to provide actual evidence of what they say, not simply the words of "experts", but the evidence behind their words.

ie, if they say that there is robust proof to support levothyroxine monotherapy, ask them to show it to you.

Similar for osteoporosis and, heart problems.