Substernum goitre

[Ali8655]

Had a scan in January which showed my goitre has grown down below my sternum. I can now feel a lump in my throat and my neck aches. I have an appt with an endo this month and I know she's going to advise a TT. As much as I would like to hold on to my thyroid I realise it's not an option. My worry and fear is what aftercare I will receive.

I am currently on 100mcg of levothyroxine and wondered if this should change after the op.

Can anyone give me any tips on what I can ask the endo to ensure I get the right aftercare.

Many thanks for listening.

[Leener71]

I had exactly the same thing and my thyroid was removed 2 weeks ago. I can now breathe a lot better. Up till now I have had no problems at all. I am on 75mg Levo. Will know more in a few weeks after blood test but I feel ok. My only problem is a very hoarse voice but that is now improving. I put off the operation as long as I could which with hindsight was a silly thing to do....

[Ali8655 in reply to Leener71]

That’s encouraging to hear Leener71.

[Clutter]

Ali8655,

As none of us know what output you have from your thyroid gland we can't advise whether you will require more Levothyroxine or whether 100mcg will be sufficient.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

Thyroidectomised patients lose ability for thyroidal conversion of T4 to T3 making them reliant on peripheral conversion. This can be fine for good converters but not good for poor converters who may need Liothyronine (T3) added to Levothyroxine. This is problematic because NHS England are currently consulting about withdrawing Liothyronine from NHS prescribing due to cost. Some areas have already withdrawn it. If this happens an option is to buy T3 online and self medicate.

See healthunlocked.com/thyroidu...

Please complete the NHS England Survey re withdrawing Liothyronine prescriptions. engage.england.nhs.uk/consu...

Please also sign the petition requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

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I have only one piece of advice, which is don't put off the operation have it done as soon as possible. Make sure the thyroid surgeon has plenty of experience i.e. lots of thyroid operations under their belt. 30 per year would be a starting point and don't be afraid to ask.

You may have a stiff neck for a few weeks afterwards but you will be fine.

I had the same problem and had mine removed in 2015. Good Luck.