Thyroidectomy

[Tatty10]

Is the treatment different for hypothyroidism and someone who has had total thyroidectomy

[France1]

I am still trying to work this out and I had my TT in January. I guess the obvious difference is that we produce no hormone at all as opposed to those that produce some or varying amounts. This does not seem to make getting the right treatment any easier.

[marbez10]

I had a TT approx. 10 years ago and until recently, was taking Levothyroxine only. This has recenty been changed to Liothyronine and Levothyroxine because the latter still left me with symptoms.

It does take a while to balance the hormones and it isn't easy.... but in my experience, I am better with the combination of hormones (T3 and T4).

[helvella Administrator]

Fundamentally the treatment is usually the same - take enough levothyroxine to keep your TSH where we (i.e. the doctors) think it should be.

Differences arise when the removed thyroid regenerates (which does sometimes happen - more often in Graves patients) or there is cancer (when TSH is usually suppressed).

There should be more though and consideration on both sides. For example, B12 is often low in people which have been hypothyroid for years. And if someone was suffering from excess thyroid hormone for a long time, it can take extra long for the TSH level to rise appropriately.

However there will be variation between doctors and areas as well as between patients.

Rod

[vajra]

As Rod say the system doesn't seem much to differentiate.

Patient feedback suggests the possibility of a couple of differences.

Removal of the thyroid can eliminate a source of auto immune/antibody activity, and make it easier to get replacement hormone working properly.

On the negative side it's been said that the thyroid produces more than just the basic T3 and T4 hormone, and that we don't do well on synthetics after a TT. Which may be an argument for trying natural dessicated animal thyroid.

Speculative, but thyroglobulin for example is a marker for thyroid tissue which disappears when the thyroid is removed. I'm not familiar with the biochemistry, but it presumably has some function? There's mutterings about it having a role in storage of iodine for use elsewhere in the body example...

ian

[Tatty10 in reply to vajra]

thank you for all replies, I will be having my thyroidectomy in a couple of weeks time and I am trying to gather as much info as I can so I know what to expect still really scared though

[vajra]

Don't worry T, done right it's not normally a big deal in terms of recovery. Lots of the ladies worry about scarring, but likewise on that.

The main thing is to get a competent surgeon - one experienced in the job. Most these days seem to be pretty much in that space.

Complete removal matters if the TT is for a thyroid cancer - the thyroglobulin test is used to decide if any is left. If levels are low to zero it makes any decision to avoid radio active iodine therapy that much easier - although these things are always a bit of a pays your money talkes your pick sort of deal.

There's a few risks as a result of unintended damage to nerves and the parathyroids, but as above problems seem to be rare these days.

I had a TT, and found it basically painless. The surgeon did a good job.

The bigger issue was to get to a replacement regime afterwards that left me feeling well - it took a few months of arm wrestling and achange of endo - and as it turned out i needed T3 and it was tough to get it prescribed.

Watch out for the tendency many endos seem to have to leave patients on a minimal maintenance dose of replacement hormone after a TT.

The theory is that they are waiting for your naturally produced hormone levels to wind down before heading down the road of blood tests etc to sort out a replacement dose (the subtext is 'with minimal input and testing) - but in my experience they make no effort to leave the patient feeling well.

It's possible to end up feeling very hypothyroid very quickly - especially if you were already markedly so - especially if as in my case undiagnosed due to so called 'normal' blood results/the very bum TSH test.

Best maybe to be prepared to get tough if needed on the issue, or better still to enquire as to what they do in advance and mark their cards that you won't stand for being left in a heap for weeks and weeks if there's an alternative option...

ian