‘Women are More Likely to get Thyroid Disease, Is that Why it’s Overlooked?’ My Experience of Primary Care Mismanagement
By Kelly Louise Marshall
It’s been twenty-three years since I first began treatment for hypothyroidism; the process to get the correct care was completely exhausting and traumatic. I would hope that since that time, the treatment of hypothyroid patients would have improved. However, as I found out in 2020 after a random phone call from a GP wanting to ‘wean me off my medication’, it had not. At that point in my life, I was feeling in good health considering we were two months into a pandemic. I was doing my best to keep myself both physically and mentally well. The thought of having to come off my medication and risk being as ill as I had been before (being house/bed bound) turned my life upside down.
I was receiving this call from a GP I had never even consulted with because my TSH levels were, in her opinion, too low. But I felt better than I had ever done at this level. I had also consulted with another GP at the surgery, who had agreed to keep me on the same dosage of Levothyroxine because I felt well. Cut to me trying to down my dosage to appease a doctor,
which made me begin to feel unwell again.
At this point I decided to find my own specialist. I had an idea that maybe I had a conversion problem, which some patients with hypothyroidism do. This means that the supplement of T4 you are given in the form of Levothyroxine for your thyroid function isn’t sufficient for you. This is because your body doesn’t convert it into T3, which is the free form of hormone that is needed in your body. Looking at blood tests and seeing what your TSH (T4) and T3 levels are can be a good indicator because ideally it is said that your TSH should be at the lower end of the scale and the T3 at the upper end for optimal thyroid function. My T3 levels weren’t optimal despite a lower than ‘normal’ TSH. I also explained this to my GP, but he was still insistent I see a specialist.
This is where the lines get blurry because routine NHS Thyroid Function Tests do not check for T3 levels, despite these tests being offered from the same NHS Labs if paid for privately. Nice Guidelines also state that ‘if the TSH is below the reference range to also ‘measure FT3 in the same sample’. It’s almost as if, by refusing to test for the problem, you can deny its existence. After receiving a letter from an Endocrinologist at my local hospital who refused to consult with me and instead said that we would stick to lowering my medication, I had no choice but
to go private.
I found a top endocrinologist who specialises in Thyroid disease. He carried out the relevant tests and found that I do in fact have a conversion problem as I suspected. I was therefore to be given T3 (Levothyronine) as well as T4 Levothyroxine. It has been a long journey and one where I am thankful to have a specialist who listens to me by my side, but what would have happened to me if I hadn’t found him? Would I have relapsed into bad health?
The financial burden of having to pay privately to see a doctor and for my medication because my GPs still won’t prescribe it to me, stating that they can’t because ‘it was prescribed by a private Endocrinologist, not an NHS one’, is heavy. However, what price does my health come at? What choice do I have if I want to be healthy?
What happens to those who can’t afford to pay for private care and are refused treatment by their GPs and NHS trusts? Because each healthcare trust sets its own guidelines around prescribing T3, it becomes a postcode lottery, with devastating consequences for those who would benefit from this treatment being denied it.
In 2022, after tireless campaigning, The Thyroid Trust published a comprehensive survey regarding T3 prescribing. During their investigations, they found that in 2017, in the NHS Medicines Optimisation Consultation, T3 was included as a medication that should not be routinely prescribed in Primary Care. In the consultation, it said that ‘due to the significant costs associated with liothyronine, the joint clinical working group considered liothyronine (T3) suitable for inclusion in this guidance.’ This was despite also finding during the same consultation that, ‘a cohort of patients require liothyronine.’
So, is it a case of cost over health? Or is it because women are ten times more likely to get thyroid disease than men that it is overlooked? Haven’t we seen similar issues in women gaining the correct treatment for menopause symptoms too?
Hypothyroidism is supposed to be a manageable disease because of the medication available to treat it. Why then is it being mismanaged when for so many years female patients have been speaking out about the unsatisfactory treatment they are being offered? Why was only one supplier of T3 used to supply the NHS, and why aren’t other suppliers of T3 being found five years on, since it was declared too ‘expensive’?
Surely above all else, the question should be: what price is too high for women to be able to function at optimum health? Do we not have a right to expect to thrive, to live long healthy lives? Would it not in the long term serve both our National Health Service as well as ourselves to be able to do so?
More information, support and guidance on the issues discussed in this article, can be found via The Thyroid Trust: www.thyroidtrust.org
Kelly Louise Marshall is based in Cornwall, UK and is studying for her MA in Creative Writing. She is September's Poet Laureate in Mslexia. Her poems are also set to be published internationally in The Afterpast Review. She has written and published various feature pieces.