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When thyroid patients don’t feel well, despite being on thyroid medication (which is most often T4-only synthetics such as Levothyroxine), they often ask me if they should switch to NDT medication as it is a popular second option.
I always say of course that I cannot determine whether it is the right decision for them, as we all do better on different medications options. Plus, I’m not their doctor!
However, a problem arises when a thyroid patient wants to either change to NDT (Natural Desiccated Thyroid), or add T3 to their T4 medication, and because these thyroid medications are not currently well-recognised as hypothyroidism treatment options to most doctors, their doctors often refuse.
Whilst doctors are not totally prohibited from prescribing unlicensed medicines such as NDT in the UK, the General Medical Council (GMC) guidance on prescribing unlicensed medicines states that when prescribing an unlicensed medicine, doctors must be satisfied that there is sufficient evidence or experience of using the medicine to demonstrate its safety and efficacy. 
When people struggle to obtain a trial of these thyroid medications from their doctor, it is a sad fact that some go down the route of self-sourcing and self-medicating, in order to take a shot at feeling better, because their T4-only medication just isn’t working for them.
So when patients do this, should they tell their doctor?
My answer is: absolutely.
When a patient informs their doctor that they have obtained over the counter thyroid medication, their doctor may well be shocked to hear it and they’ll likely try their best to convince the patient not to take it and tell them how unsafe it is.
They will likely urge you to stick to the T4-only medication because of course, sourcing any medication without a prescription is far from ideal. In short, they will miss the point that you’re telling them that T4-only meds aren’t helping you. But this is because they’re told to stick to this medication only.
However, whether the situation of telling your doctor that you’re taking a self-sourced medication is painful or not, it’s still important to get that you’re taking a non-prescribed medication on your medical records, especially should anything happen to you.
If you ended up in hospital, especially unconscious, the doctors need to know what your daily medication is, so they can decide upon the best care for you and be aware of any interactions or impacts with other medications or treatment options. I also always recommend having your doctor work with you in using any self-sourced medication as adjusting your dosage etc. on your own is very risky business.
When you come to being prescribed any other medicine in the future for other things, they need to know what else you’re taking in case it clashes or affects absorption, so please always tell them what you’re taking. Don’t hide it.
What we need to do is go to our doctors and make them aware that so many patients are feeling better on another medicine, be it NDT or T3, to the point that they’re self-sourcing this medication. The more patients that doctors have telling them this, the more of a chance we have of them taking note and changing their minds about the efficacy of the medication.
I know it can seem daunting, scary and anxiety-inducing to think about going in and announcing to your doctor that you’re taking a medicine they don’t know about or don’t approve of. But we have to, to make them take note that we’ve had enough of medication that leaves us feeling like death, that NDT and T3 meds can be used safely and effectively and that more patients than they know are not benefiting from T4-only meds. We all also benefit from a doctor’s guidance when using medications. It is dangerous to self-medicate and we can’t avoid this issue either.
Always always always tell your doctor what you’re taking and how you’re getting on with it. You want to aim to create a positive relationship with a doctor you can work with, together, on your health.
And remember that I always recommend exhausting every avenue to get any medication prescribed by a doctor first, and that self-sourcing be seen an absolute last resort. But always let your doctor know of your intent to self-source if you’re seriously thinking about it and do it with their help.
Have you told your doctor if you’re on a self-sourced medication? It’s a sad fact that in the UK especially, so many turn to this option as a last resort.
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Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes writing articles, authoring books, producing her Thyroid Family email newsletters and speaking on podcasts, as well as being a founding board member for the American College of Thyroidology. She is well-recognised as a crucial contributor to the thyroid community and has a large social media presence. Her books include “Be Your Own Thyroid Advocate” and “You, Me and Hypothyroidism”.