Low dose thyroxine

[Sandstone]

I told my therapist that recently I wasn't thinking entirely rationally, and one example I gave was my thyroxine. I found myself thinking I shouldn't re-order them, because I didn't need them and was making a nuisance of myself at the doctors by asking. Then I thought I should just stop taking them. Then, most worryingly, that I should take all I had left (14 days worth) at once because then they would be out the way.

Pills generally have been a problem for me. I've od'd on everything available and then put others at risk, and thyroxine itself has problematic links to my past that resulted in me being admitted when I first started them.

I told T that I'd had difficulty re-ordering in the past, and reached the stage where I had to take what remained on alternate days and then miss four days before I could force myself to do it. She pursued this, and ended up advising me to wean myself off altogether, because she had. I knew she was opposed to MH meds, but hadn't realised she was anti- others stuff.

Now I'm confused. I think I needed her to encourage me to take them as medically advised, because anything else plays into my most alluring method of suicide. I have no problem with telling her that, and will do next session.
But I wonder if do need to be on them at all? I'm only on 50mcg, and my GP was hesitant about starting them at all, because thyroxine can increase anxiety. I'm not being monitored very well with it, I had to chase for the blood tests, monts after they were last due, and that translates in my mind to, "doesn't matter, trivial and unnecessary"

So finally, my question is - has anyone else on a low dose of thyroxine stopped it, without medical support, and what were the consequences? I've looked online a bit, but there seems to be no rational discussion, just two polarised views.

 

[scout86]

This sounds like something best discussed with an endocrinologist. The fact that you had problems getting testing done makes me wonder about the quality of the health care providers more than anything else.

If you need the thyroxine, you do. The first step is establishing whether or not you need it and that's got to be based on your body, and your test results. It really doesn't matter much what someone else's experiences have been. Do you think the original diagnosis was accurate? (They didn't just put you on thyroid meds because you asked them to, did they?)

You said that not wanting to take the meds, or taking them in a way that's inappropriate, is part of a dysfunctional pattern. That suggests your best bet is to avoid the pattern and keep taking them as directed, until the prescribing doctor says different. Your T really isn't qualified to practice medicine any more than your GP is qualified to practice in the mental health field. They can each have opinions and experiences that are worth considering, but they kind of need to stay their own lane.

 

[barefoot]

I agree with @scout86 - if you know this is an unhealthy pattern you fall into (avoiding taking meds etc) and it appears that you’re going there now with your thyroxine, I would suggest trying to break that pattern by resisting the urge to stop taking them.

I don’t think it’s useful for your T to suggest you stop taking them because she did. You don’t know the ins and outs of each other’s medical history/needs and, if she is anti all kinds of meds, that’s her view but it’s not really her place to advise you to do the same.

Do you think the thyroxine is increasing your anxiety? If you think you are having this side effect, it would be worth discussing with your GP.

It sounds like this was your GP’s only hesitation re starting you on it - not that (s)he was uncertain whether you needed it.

I know the request in your post was re whether anyone here has stopped taking it and had consequences or not. I’m afraid I can’t help with that. And I suspect different people might have different responses to doing that anyway.

What I wanted to say though - and this is why I thought I’d reply really - is that, with thyroxine, a low dose can still make a huge difference.

My partner is on a much higher dose than you. Her mum is on a low dose - I think she is 50mg, the same as you.

Before she was diagnosed with a thyroid issue, she (my M-I-L) was feeling very low and teary and she’d put on some weight for no real reason and just didn’t feel herself at all. We were all quite worried as it wasn’t like her at all.

Cue various tests and then an under active thyroid dx. I think they started her on 25mg. Within not a whole lot of time (a few weeks maybe? Maybe less. I can’t really remember now but it wasn’t very long) her symptoms significantly reduced. She lost the extra weight she’d put on without really trying and her mood improved until she quite quickly felt back to her old self again.

So, please don’t feel that because it’s ‘only 50mg’ it can’t be having any impact and you don’t really need it.

If you need it, you need it. And, if 50mg is what you need, I would imagine there would be some kind of impact if you just stopped taking it.

 

[Sandstone]

best discussed with an endocrinologist

I think it's incredibly unlikely a GP would refer me to a specialist for so routine a condition. I think you are in the US, and I understand that you can refer yourself there, but in the NHS a GP gatekeeps secondary level care.

They didn't just put you on thyroid meds because you asked them to, did they?

It sounds like this was your GP’s only hesitation re starting you on it - not that (s)he was uncertain whether you needed it.

The thyroid deficiency was identified througha blood test requested by a psychiatrist. That also identified my kidney problems, so the focus was on those. The GP I saw then said the thyroid problem was so slight it was questionable whether it needed treatment, especially given the possible side effects. Subsequently my psychologist pushed for more focussed GP care, and the GP she wanted me to see considered it was worth starting on 25mcg, and subsequently increased the dose. However, that GP has now moved on, so I'm back to seeing random GPs, and no-one is monitoring anything unless I push. I find that hard, because of my Don't Make a Fuss programming, so I generally stay away.

part of a dysfunctional pattern.

they kind of need to stay their own lane.

I think medical care has to be part of the therapy lane for me, because I'm so sure I don't deserve it, and because it was routine medical care that set off my delayed onset PTSD.
In practical terms, I tend to assume that once I've set myself on a course I should continue until I see good reason to change, and I haven't seen reason to stop thyroxine yet. however, I know there is a view that artificially supplementing at low rates can reduce the bodies ability to rebalance itself.

Do you think the thyroxine is increasing your anxiety?

I don't think so. I have some things that indicate I could be on too high a dose - overheating at night, racing pulse - but others suggest too low a dose - sluggishness, weight gain, constipation - and all of those things can be directly linked to MH issues anyway.