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 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 medicine, and because T3 and NDT are not currently licensed in the UK, doctors often refuse. It can, however, be prescribed on a named-patient basis. 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 it’s apparently just a coincidence that all my problems and symptoms went away when I started using NDT.
The evidence is right there in front of them. It’s so sad that many patients therefore, go down the route of self-sourcing and self-medicating, in order to take a shot at feeling better. It’s negligence, is what it is.
So when patients do this, should they tell their doctor?
My answer is absolutely.
When they tell them, their doctor may be shocked to hear it and so they try their best to convince the patient not to take it, tell them nonsense about how unsafe it is (it’s perfectly safe if sourced responsibly and used responsibly) and urge you to stick to the T4-only medicine, because they’re missing the point that you’re wanting to change meds, because of how crap that medicine works for you.
However, it’s important to get on your medical records, what you’re putting in to your body, 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.
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 Levo/Synthroid prescription, while the doctor thinks “she’s doing so well on it” just reinforces what they already assume about T4-only meds- that they’re superior to anything else, and all we need to feel better.
We need to go in and make them aware that so many patients are feeling better on another medicine, be it NDT or T3. The more patients they get telling them this, the more of a chance we have of them taking note and changing their minds.
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 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.
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’ll 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, then it’s hardly horrific. We’re not taking heroin or meth, for Christ’s sake.
It’s true, they could start to blame other problems on our usage of unprescribed medication, once they know we’re on it, but I certainly believe that all of the above points out-weigh this. 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.
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:
Written by Rachel, The Invisible Hypothyroidism
Rachel is a Thyroid Patient Advocate and Expert with Six 2018 WEGO Health Award Nominations. She is a highly ranked writer appearing in the Top Hypothyroidism Websites and Top Thyroid Websites 2018. Currently studying for relevant qualifications and certificates in Life Coaching, Diet and Nutrition, Reflexology and more, she has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Dr. Hedberg, Thyroid UK and ThyroidChange, to name just a few. She is well recognised as a trusted and useful contributor to the thyroid community.