Substernal goitre

[Ali8655]

Hi. I have just been for an ultrasound on my goitre and was told that it has grown down and across my sternum.

I just wondered if anyone had the same diagnosis and what their outcome was.

The internet seems to lead down the path oc a TT which is something I would like to avoid to be honest.

[Clutter]

Ali8655,

I'm pretty sure thyroidectomy is the only option to stop it descending lower.

There are some posts on sub-sternal goitres and thyroidectomy in healthunlocked.com/search/s...

[Ali8655 in reply to Clutter]

That was my fear Clutter. I now need to get my function levels to where I feel good and make sure I have a record of my all my thyroid function.

Thanks for responding.

[sued007]

I hsd same multi nodular goitre that was sub sternal and was crushing trachea eventually. I had tt 2yrs ago and best thing was so ill by leaving too long.op was fine but vocal cord paralised lots of speech theraphy but would do again in a heartbeat was soooo ill before

[Fio1331]

Hi, I had the same diagnosis just over a year ago. It was a relief in some ways as it explained lots of odd symptoms (my 'chest' and 'digestive' issues turned out to be caused by the goitre crushing the trachea and oesophagus). I had surgery last March and they were able to do a 'near-total' thyroidectomy, so leaving a small part of the gland. It does have some function but I need levo too.

It seems to be a bit of a minefield (like most thyroid issues or we wouldn't all be on here ) trying to work out what the thyroid can do on its own and how much additional support it needs. Still tweaking doses after 9 months, but overall feeling so much better.

The surgery itself was straightforward - I mean medically speaking - never fun for the patient of course, but it went well and my physical recovery from the surgery itself was relatively quick. Now you can barely even see the scar.

Good luck. x

[mrsm49]

I had an mng that i was "hanging on to" as was trying to avoid a tt for as long as poss. I had annual biopsy and scan but in the third year it became substernal and had to come out. This was in dec14.

There are issues with getting medication right post tt and there are lots of vits and minerals that need to be kept at good levels. There is loads of helpful advice here though.

I would say you will need a tt sooner rather than later unfortunately but if you do yr research you can lessen the impact it has on you post tt.

Good luck x

[Ali8655 in reply to mrsm49]

Thank you mrsm49. Did you get a lot of support from the doctors in getting your meds right. That's the part that frightens me most as my doctors tend to rely on my being within the test range.

[mrsm49 in reply to Ali8655]

Not much help fm medical profession ive encountered so far but with advice n help fm here ive stood my ground, i know what tests to ask for and where my results should be, what supplements to take etc.

Its not so scary when you realise that so many others are in same position and you can talk to them here. X

[Hidden]

The consequences of hanging on for longer is that your symptoms will get worse and the operation becoming more difficult. My multinodular went downwards as well as attaching itself to the scar tissue from TWO previous thyroid operations and any any other convenient location it could find according to my surgeon at Aintree Hospital.

I know of no other cure for this type of problem unfortunately. I simply know that the longer you leave it the worse it gets. Again, unfortunately, it includes several dangers and will not be undertaken by any surgeon unless there are no other available options.

The most serious could be the most serious of all, but lesser ones include losing the ability to speak, losing the parathyroids in addition to the thyroid, infections and the need for a tracheotomy following surgery due to burst blood vessels. Others may know of other possibilities. The majority of operations are, thankfully, totally successful.

There is, however, a lot of questions that you need to consider asking your doctor/endo/surgeon beforehand concerning the advice you will be given before surgery and the treatment you will get following any operation of this sort. The document you need to study is:

CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER.

available here: gmc-uk.org/guidance/ethical...

If it ever comes to your need to have RAI afterwards you can find the source for a lot of questioning here:

rcr.ac.uk/sites/default/fil...