Thyroid hormones delayed release after surgery

[Tessa K]

I've tried Googling this but can't find what I'm after (or possibly I'm not understanding what I find).

I understand that there's a delay between taking thyroxine/carbimazole when you have an under or over active thyroid as your body adjusts how much is made according to your levels. Something to do with homeostasis? That delay is 2-3 weeks, I think.

I'm trying to find out if there's a similar delay after a total thyroidectomy.

I meant to ask the GP about this but I forgot. My dose has been changed and I want to know when I can expect to feel it (if I do, it may need adjusting again). I'm not due another appointment for three months.

I'm not asking for medical advice, just if anyone understands the mechanism of thyroxine release when there is no thyroid. Is it stored and if so, where? Or does it get into the body immediately? If there is an effect, when can I expect it?

[GeenDienst]

The labelling for LT4 mandates dose adjustment every 3-4 weeks during initial titration, so that could be something of a guide.

[Tessa K]

The labelling for LT4 mandates dose adjustment every 3-4 weeks during initial titration, so that could be something of a guide.

Is that after thyroidectomy though or just as treatment for a present but malfunctioning thyroid? That's what I'm not getting from searches.

[GeenDienst]

Don't think it makes much difference. Might alter the starting dose used, along with age, concomitant CV disease etc., but after that it's adjusting to set the TSH level (usually) either way. Labelling doesn't mention thyroidectomy as a special population.

[Tessa K]

Don't think it makes much difference. Might alter the starting dose used, along with age, concomitant CV disease etc., but after that it's adjusting to set the TSH level (usually) either way. Labelling doesn't mention thyroidectomy as a special population.

Oh, OK. I don't know the mechanism of where the hormones are made and stored and what the role of the thyroid is. I know there's a kind of feedback loop between the brain, the pituitary and the thyroid to keep levels stable but I don't know how it works so I wondered what would happen if the thyroid was taken out of the loop - when you take a pill, where does it go and where is the holding pen for it until it is needed?

[GeenDienst]

The role of the thyroid is to keep the internet full of conspiracy theories and unevidenced, possibly dangerous opinion in direct conflict with that provided by someone's endocrinologist and presented as medical advice.

[Tessa K]

The role of the thyroid is to keep the internet full of conspiracy theories and unevidenced, possibly dangerous opinion in direct conflict with that provided by someone's endocrinologist and presented as medical advice.

My problem is that a lot of the advice and information I've found are either anecdotal from possibly not entirely reliable people or too technical for me to understand. Which is why I asked here.

Once you've had surgery you're in the hands of the GP, not the endocrinologist. I had a good conversation about dosage with mine but forgot to ask this as I also needed to talk about the scar and some other stuff.

[GeenDienst]

Very quick...TSH gets released, it makes your thyroid make hormone, the hormone goes and does thyroidy stuff. Feedback - not enough hormone, you make a bit more TSH and vice versa.

No thyroid at all, pituitary says "WTF? hey lads, need help here" and you get lots more TSH and it gets very high. Swallowing the hormone cheers up your pituitary, and it puts its little pituitaryey feet up. So, the doc starts dosing you somewhere lowish and safe, and then sneaks up your dose until TSH is in the right range.

Accordingly, it's reasonable to think that won't know if your thyroid things feel fixed until your TSH is fixed, i.e. your dose is right.* Another issue is that some people continue to have thyroid like symptoms, even when their TSH is normalised (whatever that means, see link below if I can find it). Problem here is, most symptoms are things like tiredness, which are nonspecific, and could be anything, so it can be hard to sort out.

Anyway, found it - quite an accessible, short review.

https://www.ncbi.nlm.nih.gov/pmc/articl ... /31662841/

Doesn't deal with surgery vs. ordinary hypothyroid, but as discussed, the principle for adjustment of your hormone dose should be much the same. Anybody else any idea on that?

*Addition after the fact - it's important to note that the standard/recommended way to guide levothyroxine dosage is by the TSH level - not primarily by symptoms.

Warning to boldfaces: mentions "thyroid", so could kick off to 150 pages at any moment. Keep large hammer near to hand.

[Tessa K]

Very quick...TSH gets released, it makes your thyroid make hormone, the hormone goes and does thyroidy stuff. Feedback - not enough hormone, you make a bit more TSH and vice versa.

No thyroid at all, pituitary says "WTF? hey lads, need help here" and you get lots more TSH and it gets very high. Swallowing the hormone cheers up your pituitary, and it puts its little pituitaryey feet up. So, the doc starts dosing you somewhere lowish and safe, and then sneaks up your dose until TSH is in the right range.

Accordingly, it's reasonable to think that won't know if your thyroid things feel fixed until your TSH is fixed, i.e. your dose is right.* Another issue is that some people continue to have thyroid like symptoms, even when their TSH is normalised (whatever that means, see link below if I can find it). Problem here is, most symptoms are things like tiredness, which are nonspecific, and could be anything, so it can be hard to sort out.

Anyway, found it - quite an accessible, short review.

https://www.ncbi.nlm.nih.gov/pmc/articl ... /31662841/

Doesn't deal with surgery vs. ordinary hypothyroid, but as discussed, the principle for adjustment of your hormone dose should be much the same. Anybody else any idea on that?

*Addition after the fact - it's important to note that the standard/recommended way to guide levothyroxine dosage is by the TSH level - not primarily by symptoms.

Warning to boldfaces: mentions "thyroid", so could kick off to 150 pages at any moment. Keep large hammer near to hand.

That's useful, thanks. My levels are now within normal range but I have strong symptoms of underactivity. In isolation, any one symptom could have a range of causes but taken together, it's indicative that the dose isn't right yet.

The GP and I discussed this and at my suggestion concluded that before I had the thyroidectomy I was hyperthyroid and could well have been for years so my body is used to running too high. While this isn't good for you long term (heart problems eg), we've decided to slowly up the dose of thyroxine so I'm at the top end of the safe range, closer to what my body was used to, which should help deal with all the symptoms.

It's more straightforward to identify and treat symptoms if there is no thyroid at all rather than diagnosing someone with no history presenting with a wide set of symptoms which could have many causes.

It's interesting that it's acknowledged how hard it is to get the right dose, at least initially, and how it needs constant monitoring throughout life as the body's levels change over time. Most conditions you take the meds and that's it. Maybe one day there will be a nano bot living in the body that can take charge of it.

On the upside - free prescriptions forever. Yay.

[GeenDienst]

Good luck, but what we have suggests that moving TSH around within its reference range doesn't do a great deal.

Thyroxine treatment in patients with symptoms of hypothyroidism but thyroid function tests within the reference range: randomised double blind placebo controlled crossover trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58535/


Effects of Altering Levothyroxine (L-T4) Doses on Quality of Life, Mood, and Cognition in L-T4 Treated Subjects
https://www.ncbi.nlm.nih.gov/pmc/articl ... /29509918/

Small Changes in Thyroxine Dosage Do Not Produce Measurable Changes in Hypothyroid Symptoms, Well-Being, or Quality of Life: Results of a Double-Blind, Randomized Clinical Trial
https://academic.oup.com/jcem/article/91/7/2624/2656437

[Tessa K]

Good luck, but what we have suggests that moving TSH around within its reference range doesn't do a great deal.

Thyroxine treatment in patients with symptoms of hypothyroidism but thyroid function tests within the reference range: randomised double blind placebo controlled crossover trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58535/


Effects of Altering Levothyroxine (L-T4) Doses on Quality of Life, Mood, and Cognition in L-T4 Treated Subjects
https://www.ncbi.nlm.nih.gov/pmc/articl ... /29509918/

Small Changes in Thyroxine Dosage Do Not Produce Measurable Changes in Hypothyroid Symptoms, Well-Being, or Quality of Life: Results of a Double-Blind, Randomized Clinical Trial
https://academic.oup.com/jcem/article/91/7/2624/2656437

Thanks for the links but they are all looking at mood, cognition and quality of life rather than tiredness, feeling cold etc. People I know who have been on Thyroxine long term (with and without thyroids) say that eventually they got on the right dose and they now feel fine, so that's what I'm hoping for - I was mostly curious about the timescale.

[MartinDurkin]

Once you've had surgery you're in the hands of the GP, not the endocrinologist. I had a good conversation about dosage with mine but forgot to ask this as I also needed to talk about the scar and some other stuff.

Just catching up, this surprised me a bit. I had radio-iodine treatment for hyperthyroidism back in 2013 and the endocrinologists at Addenbrooke's didn't discharge me to GP care until they had got my levothyroxine dose stable. I think that took about 1 year. Now I am on annual TSH tests with my GP practice.

On a side note my TSH level had gone up this year, and they told me off for not taking my levothyroxine 'first thing in the morning at least half an hour before food'. I'm sure I would have remembered if the endocrinologists had told me that originally but is it really important when you take the drug?

[Tessa K]

Once you've had surgery you're in the hands of the GP, not the endocrinologist. I had a good conversation about dosage with mine but forgot to ask this as I also needed to talk about the scar and some other stuff.

Just catching up, this surprised me a bit. I had radio-iodine treatment for hyperthyroidism back in 2013 and the endocrinologists at Addenbrooke's didn't discharge me to GP care until they had got my levothyroxine dose stable. I think that took about 1 year. Now I am on annual TSH tests with my GP practice.

On a side note my TSH level had gone up this year, and they told me off for not taking my levothyroxine 'first thing in the morning at least half an hour before food'. I'm sure I would have remembered if the endocrinologists had told me that originally but is it really important when you take the drug?

Maybe it's because you had radio iodine treatment it was different or maybe now post op care has been palmed off on GPs, I don't know.

Taking the tablet first thing in the morning doesn't work for me as I'm up and out within ten minutes on gym days (and no, no one told me this in hospital or at the GPs). The important thing is that your stomach should be empty so it's OK to take it last thing at night as long as you didn't have a late dinner. There are many reasons your TSH level might have changed that were not your fault - lifestyle changes, ageing, natural hormone fluctuations and many other reasons. That's why you keep getting tested.

It's three months today since I had the op. It seems like ages but in terms of wound healing I suppose it's not much. Someone told me she had a C Section 14 years ago and although the scar is very fine, the area is still tender sometimes. I'm being careful but I'm my usual relentless self in the gym. I totally owned my nemesis, the military press, this morning.