Today I had my six month follow up with hospital Endocrinologist and I’ve been left feeling very deflated and disappointed. When I seen him six months ago, he agreed to start me on T3 (Liothyronine, 10mcg twice daily) with the agreement that if my symptoms didn’t improve, I could be referred to a specialist in Birmingham who could prescribe NDT. Six months on, I still have loads of symptoms yet my blood results are “in range”. Endo has now backtracked and has said the specialist referral would need to come from my GP (who doesn’t even know what NDT is) and that it would be private and I’d have to pay. He also thinks that because my thyroid results are “in range” (note: not “optimal”) that my symptoms must be down to something else.
My main symptom is constant fatigue; in particular I can’t get out of bed in the mornings despite a good night of constant sleep. A lull in energy in the afternoon is also constant. I also have:
*weakness/tremors (particularly in my hands) and can’t do anything such as open a bottle of jar.
*fluctuation between being cold and being hot, but most of the time I’m hot and have to have a fan on at work all day (my temperature is never any higher than 36.9).
*problems with what I can only describe as pressure in my head which affects my hearing. The only way I can describe it is similar to if you jump into water. Also have regular ringing in my ears and am very sensitive to noise. I’m researching this at the moment and have come across Ménière's Disease which apparently can also cause fatigue.
*dizziness/floaty feelings on occasion, possibly linked to the above.
*my nails are very brittle and snap/break quite a lot/dry hair and skin.
*very low motivation – I no longer have a social life because I’m too tired to make the effort to do anything.
I have managed to have the Endo include tests for Hashimotos on next bloods, however he reckons I probably do have it and that a positive result doesn’t change anything anyway. I asked him to also add FT3 and FT4 and he agreed, however has only written ‘T3 and T4’ on the form. I was originally taking Thyroid-S which my doctor told me off for as I was apparently making myself hyper, hence the referral to Endo. Having now hit this brick wall, I’m going to self medicate and go back onto NDT but am not sure of how to manage it – I think I may have increased too much in the past which is why I tested hyper. I do know that the symptoms above were greatly improved when I was on the NDT.
Aside from my moaning above, I have a couple of questions for those of you who are UK based and take NDT. Please PM me if you can answer any of these questions to abide by forum rules.
*Which NDT brand do you take?
*How did you go about getting it? (i.e. purchase online, via an FMD etc). Specific websites would be really helpful.
*Does your (NHS) doctor offer blood tests to help you manage your dose? With that – how do you inform them of optimal dose on NDT as opposed to their understood ranges on synthetic.
*How did you find your optimal dose – when did you know when to stop increasing?
*Does anyone know whether it’s possible to buy Naturethroid over the counter in Thailand, and if so, what the cost is?
I would really appreciate any wisdom or advice on this. Health professionals don’t seem to look too kindly on patients who do their own research, but it's certainly not going to stop me.