No thyroid hormone after total thyroidectomy

[humanbean11]

healthunlocked.com/thyroidu...

I posted a couple of years ago about my daughter, who is now 20. She is again refusing to take thyroxine, saying she isn't unwell and doesn't need it... it's complicated as she has other things going on (mental health and other autoimmune disorders). The last two years have been up and down with three hospital admissions. Anyway, she's now detained under a section 3 of the mental health act as she's been deemed unable to make appropriate decisions around her medication. Her last blood test that I know results of was in August, when there was no detectable T4 or T3 and her TSH was off the chart. Her body is completely swollen, she has slurred speech, is always freezing and sleeps most of the time. She is hallucinating and is delusional, thinking that test results are being fabricated, even though she has had a total thyroidectomy.

The hospital has said that they cannot force medication for a physical complaint; she's falling between the gap of mental and physical care. She hasn't given consent to share information so I'm flailing blind.

I don't even know what my question is, other than I'm desperate and need to know if anyone has any knowledge around this. I suppose I feel I'm in the brace position waiting for an impact that may, or may not, happen. I need information to enable me to process, and prepare:

- Is it correct that the hospital cannot force medication?

- How long can someone survive with no thyroid hormone (we're already at well over six months)?

- How do I accept that this is her choice and that we may lose her??!

Thanks for reading, and that's to anyone who feels they can reply (she's the one on the right, with her sister and cousin) xx

[Hillwoman]

Oh HB! I am so sorry to read of your plight. Apart from keeping you in my thoughts and hoping for the best outcome for you all, what springs to mind just now are the few reported court cases I've heard about over the past decade or so, in which medical treatment was sanctioned where a patient was deemed not to have capacity. I think this principle would apply to your daughter, but you really need a solicitor's advice. I would look for one who specialises in matters relating to powers of attorney and the Court of Protection, or capacity and consent as they relate to people with severe mental health issues.

xx

[helvella in reply to Hillwoman]

Though having no legal knowledge, I suspect that this response identifies what is needed.

[Hillwoman in reply to helvella]

I've had some experience with these matters in relation to a close relative, and I'm about to enter the fray once more in relation to my very elderly father-in-law, whose hypothyroidism has never been treated. The effects are appalling.

[helvella in reply to Hillwoman]

How do I say "Best of luck" without it sounding light-hearted or meaningless words?

[Hillwoman in reply to helvella]

Thank you

[helvella]

That is an awful story.

Historical medical material suggests that people typically last about twelve years from recognition of an issue. However, that is largely from the nineteenth century and so many things are different. Things can suddenly change - for example, heart issues or ability to recover from other illnesses.

Have you considered contacting people like Mind?

mind.org.uk/

Maybe there is some organisation in your area?

[helvella in reply to helvella]

A classic paper which, despite its age, is still relevant is this:

Br Med J. 1949 Nov 12; 2(4636): 1112.

PMCID: PMC2051743

Myxoedematous Madness

Richard Asher

ncbi.nlm.nih.gov/pmc/articl...

Many more recent papers still reference this paper, or the papers this appeared to spawn.

It too is horrific reading but just hoping that you might find some support from it.

[RedApple in reply to helvella]

Thanks, for posting that link. It is exactly the paper I had in mind when I commented, but didn't have the link to hand.

[RedApple]

Humanbean11, This is absolutely shocking, I am so sorry 😢 I will leave the practical legal type help and advice to others who I know are more knowledgeable on this than I am.

What I can say, from personal experience, is that hallucinating and delusional (and of course the slurred speech, freezing, swollen etc) are all symptoms of thyroid hormone deficiency. Therefore, the professionals saying they can't 'force medication for a physical complaint', is indicating a complete lack of understanding of the need for thyroid hormone in the brain!

I don't know how you can persuade them, but presenting them with papers about myxoedema madness would be my approach. They may well ignore the evidence that you present of course.

[MichelleHarris]

Hi humanbean11,

My heart goes out to you.

Of course they can enforce treatment if it is to avoid deterioration in physical or mental health. It happens all the time. A section 3 is especially to enforce treatment.

She lacks capacity for this particular issue as any one knows with no thyroid she needs thyroxine and lack of thyroxine will be underlying her mental health issues.

Is she already on a CTO?

In the event of emergency life saving they will give medical care with no section at all x

[MichelleHarris]

They likely will be trying to encourage her participation initially as its traumatic for everyone, forcing medication. They are well trained and have much experience in encouraging participation. Im sure they will be very kind with your daughter x

[Mamapea1]

I'm so very sad to read this humanbean11...unfortunately I don't know what you can do...I hope someone else will find a loophole for you. As I recall, when this awful situation initially unfolded, it seemed as if your poor daughter needed T3, and the Levo hadn't been working for her. As far as I'm concerned, this is an extreme example of how lives can be tragically ruined by poor thyroid care. My heart goes out to you both, and I sincerely hope you find a solution to this heartbreaking situation very soon🙏 x

[Hidden]

I can add nothing to this distressing story other than to suggest that she should take NDT rather than Levothyroxine in the long term after regaining some degree of normality with Liothyronine (T3). NDT will will give improved relief from the symptoms of a TT.

In her condition she should be taking Liothyronine (T3) immediately. This is greenlisted for this condition (Myxedema) but not for simple hypothyroidism. Check with the doctors that they are fully conversant with this use for T3.

[fuchsia-pink]

Very sorry to read your story.

If your daughter has been sectioned, she is entitled to see a specialist mental health solicitor [NOT a "private client" solicitor dealing with powers of attorney]. Legal aid is available.

Have a look at the Mental Health Lawyers' Association website to find someone local to you

ps my step-daughter is a mental health solicitor - I will ask her about medication etc when she finishes work today

[fuchsia-pink]

Just spoken to step-daughter ... she has a patient who had refused to take her thyroid meds - to keep her weight down ...

She advises you CAN'T force a sectioned patient to take medication for physical conditions (as opposed to mental health meds). Your best option for this is to go to the Court of Protection to say that she lacks capacity to make decisions over her thyroid health and get intervention that way. Some of the solicitors on the website I mentioned before will also deal with Court of Protection matters

Good luck x