Advice - Thyroidectomy next week

[Emmabai1ey]

Good evening all,

Wondering if anyone has had or can offer any advice about a thyroidectomy. I am due to have it done on Friday 25th as long as my lugols iodine has worked and suppressed my TSH level.

I have Graves' disease and have become resistant to carbimozole. RAI is not an option for me as I have a 2 year old son.

I went for my pre op appointment on Monday and was told about all the risks and ins and outs. I also have type 1 diabetes and asthma although my asthma is very well controlled and i rarely need my inhaler.

In the pre op appointment I was told that a tracheostomy may be necessary although there is a very small chance. An even smaller chance that it would be permanent. This has really worried me.

As I've got other conditions he said it is probable I will be having a stay in intensive care after my operation.

Does anyone have any words of advice?

Thanks in advance

Emma

[Hidden]

Good morning,

Just to say you will be fine and please try not to worry.

Post surgery they will keep you pain free and although it's not great after a week you will be feeling much better. As time goes on less symptoms too.

They always have to tell you the things that could happen but rarely do.

Bio Oil is great for putting on the scar twice a day when you feel up to it. It makes it fade really well.

Best wishes to you Emma.

[hohoho]

Hi I had a total thyroidectomy (Graves) in March this year and I was given all the worst case scenarios beforehand just like yourself. It is a legal requirement and hard to hear this but the risks are very tiny. I was worried but it was a complete success. I was a little hoarse and it was a bit painful but now 9 months on the scar is barely visible. I also use bio oil. I would avoid cocodamol if you can - bad constipation! My advice would be not to rush back to life and allow yourself time to recover, it does take time, although I appreciate this is difficult with a 2 year old. All the best.

[Emmabai1ey in reply to hohoho]

Thank you both for your replies.

It's so much easier hearing it from someone that has actually been through the same thing!

😊

[Sara70]

Good luck on Friday. 🤗

[helvella Administrator Thyroid UK]

We have had some very positive reports here from some people - sometimes within hours of their ops. Look forward to your post-op report.

[Hidden]

Just don't worry as that could very well make the surgeon nervous when he speaks to you beforehand!

Try to crack a few jokes and stay happy. I tried to get the surgeon who did me to leave a lovely juicy scar on my throat so I could scare my kids, but he did a marvellous job instead.

You will certainly feel a lot better afterwards so look forward to it. The surgeon is obliged to tell you the stuff he seems to have done already, so don't be too concerned about it. But one thing you need to ask about is the fact that you allegedly can't have RAI. I presume that is from the slight danger to your child of close contact with you after the treatment. There is a problem with this, however, which is that the surgeon is unlikely to be able to remove every trace of your thyroid for fear of doing damage to the nerves, as you have mentioned. This leaves you with thyroid tissue which will then have every incentive to start operating again as the original thyroid gland once did.

You will then be offered levothyroxine for life, but this will have 2 main drawbacks -

1. Your remaining tissues will be in a constant battle with the levo, resulting in chaos.

2. Levo is the WRONG medicine for anybody without a thyroid gland, you MUST take NDT from the start or suffer untold horrible consequencies.

I know it will sound heartless, but the course of action you should take is to actually have the RAI treatment but avoid direct contact with your child for however long is appropriate. You will then avoid the unknowns that will otherwise affect you for years to come. Just make sure to take NDT and avoid the poisonous levo.

Just get the first stage over before thinking about what happens next, though. Hope this is helpful. Based on actual personal experience.

[jaxie28 in reply to Hidden]

HI there you say to take NDT from the start but how can you get this NDT?

[Tamzin27]

Hi Emma,

I had a total thyroidectomy 2 weeks ago. Still recovering and I feel so much better. I have been posting updates and my experience from going to hospital and post op. Please see my profile and you can read my posts. I wrote these posts because I wanted to help people like you who are about to have a thyroidectomy. If you have any questions please PM me and I am happy to answer.

Good luck and take care

Tamzin27

[Davidc555]

Hi Emma

I see that you are taking Lugols . Before you embark on such a huge step have you followed Stephanie Buist on Facebook ?

Stephanie had Thyroid Cancer and had been through 2 RAI treatments before she saw Dr David Brownstein who treated her thyroid cancer with Lugols (sucessfully). She bitterly regrets having her thyroid killed by the RAI. If you are not a member please join her on the Iodine group on Facebook and put this post onto the group and ask Stephanie for advice (if you have not done this already) :

facebook.com/groups/iodine4...

There are a number on the group who have Graves disease.

Best wishes

David

[maximummy]

I had a total thyroidectomy nearly 20 years ago after 7 years of high swings and high lows ... didn't want RAI as there was a blood problem in the family. I have been on Levothyroxine since, starting with 200 and now, just into my 60s, down to 125 daily.

Advice on the op. Take your own pillow in. You don't know how heavy your head is until you have a throats incision! You may feel a bit off for a few weeks u til you find the right level of thyroxine and be sure to get your calcium levels checked for a while. Pain wise, not too bad ... maybe a few weeks and my voice was hoarse for a while.

Good luck