Impact of a total thyroidectomy

[pinkpixie]

Following a neck ultrasound to investigate a lump in my neck last week, I now have the results from my GP. There is a goiter (enlarged of its own accord) and multiple cysts on my thyroid.

The recommended path is to remove my thyroid. I had the other side removed 23 years ago as it had a large cyst wrapped around it. Therefore this would leave me with no thyroid and dependent upon thyroid medication. My thyroid levels were normal earlier this year, although I am repeating the blood test in January to check that this is still the case.

The other option is to watch and wait to see if it gets worse.

Are there any implications for quality of life on thyroid medication or physical wellness (I exercise a lot and like running, for example)? Is there anything that I should know if I opt for the total thyroidectomy? I also like a few glasses of wine at the weekend (my only vice!), would I still be able to do this if I was on thyroid meds? Do the tablets have any common side effects?

I should have asked the GP more questions!

Thanks in advance.

[Nanaedake]

Which country are you in? In the UK, it's very difficult to get T3 so if you have a TT you may find yourself restricted to T4 only meds and not everyone feels well on these.

Officially the jury is out on whether patients need combo therapy but lots of people attest that only combo therapy keeps them well.

Levothyroxine has had a poor history of quality control in UK, also lots of worldwide issues around patients feeling ill when reformulated. You can view Web reports from UK, US, New Zealand and Australia.

Having said that, the majority of people do fine on Levothyroxine and have no problems.

[pinkpixie in reply to Nanaedake]

Thanks Nanaedake for your reply. Yes I am in the UK. Feeling unwell is what is concerning me most as I feel fine at the moment.

[Nanaedake in reply to pinkpixie]

Read the 2013 MHRA report on Quality and Clinical Considerations of Levothyroxine and discuss with GP. He/she probs won't even know it was reviewed.

Also paper by professor Toft, sorry on phone so don't have links to hand. Use search function on this forum to find it.

[pinkpixie in reply to Nanaedake]

Thanks - will do.

[Clutter in reply to pinkpixie]

Pinkpixie,

Is there any particular reason to remove your remaining lobe ie is there a suspicion of thyroid cancer, or is the goitre impacting other organs or vocal chords or growing down into your chest?

[pinkpixie in reply to Clutter]

It's growing down into my chest. according to the report.

[Clutter in reply to pinkpixie]

Pinkpixie,

You really don't have an option and should have the surgery 85% of patients do well on Levothyroxine once they are optimally dosed.

You will be prescribed Levothyroxine in hospital on the morning after surgery and it is likely to be a replacement dose of 100-150mcg so there won't be months of incremental increases although there may be some tweaking here and there.

There are alternatives if Levothyroxine doesn't suit but you may have to buy your own and self medicate if NHS won't prescribe them.

[pinkpixie in reply to Clutter]

Oh really I think I had better do some reading up over the Christmas break then so I am armed and ready for my next appointment.

[Clutter in reply to pinkpixie]

Pinkpixie,

Google "substernal thyroidectomy" and have a look at these posts healthunlocked.com/search/s... and healthunlocked.com/thyroidu...

[SilverAvocado]

Pinkpixie, I have had quite a bad time post thyroidectomy, and am now self-medicating and finally getting to the point where I'm back in the normal world. But it is now getting on for five years later

The claim is that 80% of people do fine on Levothyroxine-only, which is what the NHS will offer you in the first instance. But I believe it's probably closer to 50%, especially if your goal is a very active lifestyle.

The second alternative is currently hard to get on the NHS, but will be easier if the team that removes your thyroid is hands on with aftercare - this means seeing you several times a year until you feel better, and that if you don't get better quickly that could be a few years. I had my thyroid removed due to cancer and still see my endocrinologist, and she is happy to give T3.

The only other thing is that you've managed well on half a thyroid for 23 years. This is quite an unusual feat, and is probably a clue that your body is very good at making use of the thyroxine it gets. I was very sick already on half a thyroid in the month or so before I had the other half removed, and my blood tests just plummeted after the operation. I think there is a spectrum with some people very sensitive and only able to manage on exactly the right amount of thyroid hormone, and at the other end of the spectrum people that are very efficient, and able to do well on any little bit of hormone. People at the efficient end will be fine with the NHS Levothyroxine. This is just a bit of a personal theory, though, not something to take into account in your decision

[pinkpixie]

Thanks SilverAvocado. It all sounds a bit daunting. I have a very active lifestyle, I'm 42, mum to two small boys, work full time, run/exercise. It's quite worrying the prospect of having good health taken from me. People always say appreciate good health don't they, I'm beginning to understand why!