Post Thyroidectomy pointers

[CTun]

Hi everyone,

After 13 months on the NHS waiting list, I'm booked in for my TT a week today!

I was diagnosed with Graves disease back in 2018 and after a couple of relapses and a few other reasons, I decided to go down this route.

I just wanted to see if anyone on here had some tips of what questions to ask or anything to do post surgery to give me the best chance of getting on track after it's been done.

I've got a grasp of the more common things like resting up, eating the right foods, looking after scar etc, but I read somewhere to check I will be offered Liothyronine if I don't do well on Levothyroxine alone.

I would never have known to ask this if I didn't read it on a forum!

Are there any other golden nuggets like this that anyone know of? I'd like to be proactive in my recovery where possible, for obvious reasons!

And is it likely I'll get frequent blood tests post surgery to check everything is in range, or am I likely to be paying for these privately to get the best outcome?

I've tried asking my Endo these questions, but I don't seem to be getting replies any more and my follow up appointments seem to be a thing of the past!

Any pointers would be appreciated.

Thank you

[Cavapoochonowner]

Hello there, I had my total thyroidectomy for graves on 14th June this year.I am doing OK.My scar looks great and is fading all the time.I haven't seen my endocrinologist since my operation.I am still being seen by my ENT surgeon.I saw him 6 weeks after my operation and they did a blood test to check thyroid levels.They are at a good level and I feel OK.I am on the same amount of levothyroxine as I was before my operation(I was on block and replace).They also checked my calcium levels which had been on the low side.These are still low so I am on daily calcium and vitamin D tablets.I go again on 3rd October for this to be checked.My parathyroid glands were left in tact but may be a bit upset at being manhandled, they are hoping they settle down.You will need to take it easy for a few weeks and just listen to your body.I have no regrets at the moment.I'm sure things will go brilliantly for you.Oh and don't be like me and choose cornflakes for your breakfast the day after your operation.Choose the weetabix, much softer.Best wishes.

[CTun in reply to Cavapoochonowner]

Hi, thanks for your reply and glad to hear that you're doing well, long may that continue!

Thanks for the info, definitely useful and I'll be sure to stay away from the cornflakes! All the best with your ongoing recovery.

[pennyannie]

Hey there again :

it might make sense to have some T3 and T4 readings of where you feel well now - as then you'll have an idea of the ratio and balance between T3 and T4 that gives you your " you " ?

There is no right or wrong answer as if we get to decide our treatment option it's part of the restoration process.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.

T4 is a po hormone and needs to be converted by your body into T3 the active hormone that runs the body and which is said to be around 4 times more potent than T4 with the average person needing to find/utilise around 50 T3 just to function.

Your own ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and inflammation, and any physiological stress ( emotional or physical ) dieting, depression and ageing also have a bearing.

We generally feel at our best when our T4 is up in, or towards the top quadrant of the range as this should in theory give us a good level at T3 at around a 1/4 - T3/T4 ratio :

Some people can get by on T4 only :

Some people find that over time the T4 doesn't seem to be as potent and need the addition of a little T3 - likely to replace that lost by loosing their thyroid gland function :

Some people can't tolerate T4 and need to take T3 - Liothyronine - only :

Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of a the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.

Currently your doctor in primary care can only prescribe T4 monotherapy and should you not find this working well for you you will need to be assessed by an endocrinologist for any other treatment option.

Approval for any other treatment option maybe driven by financial restrictions imposed through various hospital trusts and CCG areas throughout the country and not necessarily on medical need and why many people are forced into self medicating.

I don't think I gave you the link to Elaine Moore last time- elaine-moore.com - there is a lot of advice on there around Graves Disease and I believe necessary to understanding this poorly understood AI disease.

Good Luck -

[CTun in reply to pennyannie]

Hi again, thanks very much for this information! I think it's going to be a case of being patient isn't it and seeing what my results are post surgery, whenever those first bloody tests are. And then trying to find an adjustment if/where needed.

I've actually recently had some bloods done and I feel fairly good at the moment (typical a week before surgery!), so that gives me a good idea as you say.

I'll make sure I check the link you sent, thanks again!

[Brightness14]

The only tip I can offer is to make sure you have the best surgeon possible. Older with lots of operations done each year. Best of luck .

[CTun in reply to Brightness14]

Hi, thanks for the reply. I didn't have any say in this but I've checked the background of my surgeon and he seems to come highly recommended and is well experienced with TT's etc

[Brightness14 in reply to CTun]

Good that's exactly what you want.

[Batty1]

Go right now and pay for your own complete thyroid panel. I regret not doing this before my thyroidectomy.