How I Feel About Thyroid Patients Self-Sourcing Medication

TW: Suicidal Thoughts

All around the world, there are people with hypothyroidism who source their own medication. I.e. buy NDT online.

And I know that many other thyroid advocates state they don’t agree with patients self-sourcing medication and I can understand why, but I’m an advocate who has had to self-source my own thyroid medication in the past.

Unlike many other thyroid advocates who live in a country where Natural Desiccated Thyroid medication is more openly prescribed (such as the US), I live in the UK where it’s becoming increasingly more difficult to have any doctor be willing to prescribe it and even know how to use it. It’s next to impossible.

Just to clarify, it can be prescribed on the NHS but most doctors refuse due to its complicated history and lack of support for it here.

Like many of the thyroid patients who follow my thyroid journey, I have not always been so lucky in having a doctor prescribe NDT for me; the medication that I need to function and stay alive. And again, this is where so many other thyroid advocates are incredibly lucky, because they do have that option and more easily too. But they miss that this just isn’t an option for so many regular folk.

After a few years on self-sourced thyroid medication, I finally managed to see a private doctor who prescribed it for me and so ended my need to self-source, but I know that many thyroid patients never get to that point.

And so of course I don’t blame any patient who feels that they have to self-source their thyroid medication because I know it’s not a choice for many of us who just need to keep our jobs, a roof over our heads and address the mental health effects poor treatment has on us. Because for me, without the medication the need to feel well, I wouldn’t be able to work or function like any other human being and I know this from before I had NDT medication.

A study in 2018 demonstrated that Levothyroxine was actually associated with a lower quality of life in those with Hypothyroidism. [1]

Yet it’s the only medication routinely prescribed here in the UK and as a result, many people have to go private for another type of medication or even buy their own thyroid medication, to get their lives back. 

Yes, we accept the ‘dangers’ associated with self-sourcing medication, but we often have no choice. For me, it was either act on my suicidal thoughts and feelings as I was so unwell, or self-source the medication I needed to get better, that doctors were refusing me. I needed to be able to get out of bed, to work, function like a regular adult. There wasn’t a choice. It is often a last resort when the medical system has hugely failed us and for many it’s not something they’re even comfortable doing, but do it just to keep themselves alive.

How is it OK that so many thyroid patients are denied the medication they need to function properly, so they take to self-sourcing it, in order to get better?

How is it OK that just as many thyroid patients aren’t comfortable self-sourcing the thyroid medication they need (which is completely understandable), so they remain very unwell without it?

We require adequate thyroid hormone for every cell and every function in the body, yet many of us are denied adequate hormone replacement when we present with low thyroid levels and standard T4 medication doesn’t help.

We’re either left without medication because doctors are going by wide, outdated ranges or ignoring our symptoms, or put on medication that doesn’t make us feel better and often leaves levels below optimal (Free T3 and Free T4 in particular).

Put simply: there is no ‘one size fits all’ medication for hypothyroidism and the:

• Wide reference ranges on tests
• One type of medication
• Testing TSH only

are all inadequate at properly treating and managing people with thyroid disease. If they weren’t, so many people wouldn’t be feeling as if their only option is to self-source medication, would they?

It’s appalling that all over the world, incredibly unwell people get to the point where they feel that their only option for getting better and being able to function like other members of society, is to source themselves the medication doctors refuse them.

Lives are shattered and devastated, jobs affected, divorces served and relationships damaged from the strains of this chronic illness and people left very mentally and physically unwell from the lack of proper Hypothyroidism treatment and management.

How is this OK?

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It’s also crucial that I express here just how important it is to always try and obtain thyroid medication, even NDT, via prescription from a doctor. Self-sourcing and especially self-medicating brings with it a lot of risks and dangers. Having an open and trusting relationship with your doctor who monitors you closely is the most ideal way to go about using any medication you may have sourced yourself and self-sourcing medication should be a last resort. See my disclaimer here.

My NHS GP supported me in self-sourcing my NDT for three years and monitored me closely.

If you’re struggling to find a doctor who will prescribe alternatives to just T4-only medication, you could also try asking your pharmacist if they know any doctors who prescribe them. See Also: How to Find a Good Medical Professional for Your Thyroid Condition

You can click on the hyperlinks in the above post to learn more and see references to information given.

References:

[1] https://www.healio.com/endocrinology/thyroid/news/online/%7Beb193222-2795-4321-8761-607131d2f743%7D/levothyroxine-therapy-associated-with-lower-quality-of-life-in-hypothyroidism