Should I Tell My Doctor I’m on NDT/T3?

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People ask me if they should firstly switch to NDT. I always say the decision is theirs and I cannot say whether it is the right decision for them. We’re all so different that different medications, supplements etc. can react differently with each of us. What I do promote however is each person finding the best medication for them.

The individual.

Because that’s what we are, individual.

The problem arises when we want to either change to NDT, or add T3 to our T4 medication, and because T3 and NDT are not currently licensed in the UK or well-recognised as hypothyroidism treatment options, doctors often refuse. It can, however, be prescribed on a named-patient basis, so don’t be fooled in to thinking it can’t be prescribed.

Whilst doctors are not totally prohibited from prescribing unlicensed medicines, 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. So, for someone like me, who has proven that NDT works much, much, much better for me than T4-only medication, it gives them a good reason to prescribe it for me. But they still refuse. Why? Because most doctors still have no idea how to use T3 or NDT medications. They’re just not taught it because T4-only medications are the medication of choice.

However, due to this ignorance and idea they have that everyone does well on T4 only meds, it’s sad that many patients therefore go down the route of self-sourcing and self-medicating, in order to take a shot at feeling better because T4 medication is not working for them.

So when patients do this, should they tell their doctor?

My answer is absolutely. 

When they tell them, their doctor may well be shocked to hear it and they’ll likely try their best to convince the patient not to take it, tell them how unsafe it is (but it’s perfectly safe if sourced responsibly and used responsibly – even safer if they want to prescribe it to you!) and they’ll likely urge you to stick to the T4-only medicine. In short, they will miss the point that you’re telling them T4-only meds aren’t helping you. But this is because they’re told to stick to this medicine.

However, whether the situation of telling your doctor that you’re on 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, they 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.

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.

Keeping shtum about it and still going in, picking up your Levothyroxine or Synthroid prescription for example, while the doctor thinks “she’s doing so well on it”  also reinforces what they already assume about T4-only meds- that they’re superior to anything else, and they’re working for us all.

Instead, 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 get telling them this, the more of a chance we have of them taking note and changing their minds about the efficacy of the medication. 

Also keeping in mind that our health service in the UK, the NHS, is already pushed, if we keep picking up prescriptions for medicine we’re not going to use, then it’s not exactly helping the case. How can we expect the NHS to get better if we’re picking up medications we’re not using? If it was to improve, we may even have a better chance at getting this medication prescribed more often on the NHS, because there could be more money for the research, resources and more doctors, so they have more time to listen to us and consider our views and experiences. So please don’t keep picking up your Levothyroxine or Synthroid prescription if you’re not taking it anymore because it worsens the situation in so many ways. Instead, your doctor needs to be made aware that this medication isn’t working for you, and still picking it up from the pharmacy is sending the opposite message to that.

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. I took a letter in to mine and read it aloud to him, to make sure I told him all I wanted to.

We also need to be wary that if anything was to happen to us, then those around us need to know what we take on a daily basis. At the end of the day, they cannot stop you from putting in your body what you want and if that is a drug that has over a hundred years of successfully making hypothyroid patients well again, well then it’s hardly horrific. We’re not taking heroin or meth, for Christ’s sake. As long as you’re using the medication responsibly and – I actually always recommend you work with your doctor in dosing and monitoring it – your doctor is fully aware, then you’re being responsible and safe about it.

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. You never know, you could change their perception of alternative medicines, and be a part of changing this scandal, where doctors stopped listening to their patients and deemed them hypochondriacs or chronic moaners.

Learn about how to safely dose with NDT here. Many users, including myself, have followed STTM’s guidelines on dosing, and done so safely.

But remember that I always recommend exhausting every avenue to get any medication prescribed by a doctor first, and self-sourcing being an absolute last resort.

You can click on the hyperlinks in the above post to learn more and see references to information given, but more reading and references can also be found at:

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Written by Rachel, The Invisible Hypothyroidism

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Rachel Hill, Thyroid Patient Advocate, blogger and author, has Six 2018 WEGO Health Award Nominations. She is a highly ranked writer appearing in the Top Hypothyroidism Websites and Top Thyroid Websites and has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Yahoo, MSN and ThyroidChange, to name just a few. She is well-recognised as a useful contributor to the thyroid community and also contributed the foreword to Emily Kyle’s The 30-Minute Thyroid Cookbook.

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