Oesophagus surgery and thyroxine intake - Thyroid UK

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Oesophagus surgery and thyroxine intake

Suzanneharb profile image
18 Replies

Hi,

I'm due to have surgery in 2 weeks time. For this, I'll be nil by mouth for a few days (since my oesophagus is being removed and a new one created with my stomach). Therefore, I won't be able to take my thyroxine! I have asked the medical team to look into this, but don't feel entirely confident they will take it seriously.

So, does anyone happen to know how thyroxine can be adminstered differently? Is there a liquid formula? And, if so, how can that get into the body if swallowing isn't an option?

Huge thanks in advance!

Suzanne

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Suzanneharb
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18 Replies
TiggerMe profile image
TiggerMeAmbassador

You would hope they would be up to speed on this... they are certainly able to inject

Yes, there is also a liquid formula

Suzanneharb profile image
Suzanneharb in reply toTiggerMe

I get the feeling I'm the first to ask! Eek. So I think I need to find out myself and tell them what to do

TiggerMe profile image
TiggerMeAmbassador in reply toSuzanneharb

They do have this silly opinion that levothyroxine isn't essential... you would think optimal levels desirable for healing and recovery but they don't seem to worry about things like that 🫤

Presumably you'll have a feed tube so liquid would be possible though maybe need slightly higher dose due to food.... might well be worth going in armed with your own supply if you can get your GP to write a prescription?

I'm certainly with you on going in with a plan

Suzanneharb profile image
Suzanneharb in reply toTiggerMe

I've just had a tube removed, so I'm not sure they'll replace it. Good shout about GP - I think I'll call later and see what they can do. My GP is really lovely and helpful

TiggerMe profile image
TiggerMeAmbassador in reply toSuzanneharb

Eltroxin is what you are after 🤗

bantam12 profile image
bantam12

It can be given iv when necessary. My late husband was in ITU for a month and had his thyroids meds by iv.

helvella profile image
helvellaAdministrator

Levothyroxine can be supplied by injection (subcutaneous or intramuscular) or infusion. There is an approved UK product from SERB - this finds the documentation:

products.mhra.gov.uk/search...

The cost might be an issue - £575 for six ampoules. And the dose required might be lower than for oral administration (as it is delivered directly, of course).

Choice of which precise technique might depend on you/your precise medical needs, and/or any previous experience your doctors might have.

Wish you well with it.

Entwicklung profile image
Entwicklung

I have nothing useful to add here Suzanne, but wanted to wish you all the best for the surgery! ⭐

sparkly profile image
sparkly

I was told many years ago by my endo that it is possible to take thyroxine in one weekly dose. Not sure if that is still applicable these days. Someone more knowledgeable might have more info on it, but could be a possible simple option

helvella profile image
helvellaAdministrator in reply tosparkly

I think that while it has been done, and might still be practice in some places, it has been largely dropped.

I have always been horrified by that approach. And would be particularly concerned if Suzanneharb dived in to try it. Right now, in the middle of very serious treatment, is very much NOT the time to play about with major changes like weekly dosing.

If she was having it done in 2026, then she would have the opportunity of trying it now and deciding whether it was viable for her.

We also see members being refused treatment (like surgery) due to unacceptably out of range test results. If you were weekly dosing, could you ever rely on a test? I don't think any lab tests have been validated against weekly dosing which could be an extreme ski ramp - climb and slide down at a hair-raising speed. Again and again.

sparkly profile image
sparkly in reply tohelvella

Oh yes I agree, I wouldn't like to take a weeks worth of medication in one. Just mentioned if iv wasn't an option and hospital brought this method up.

Libuse profile image
Libuse

I had cancer of the oesophagus 18 years ago and have been noticing l by mouth ever since. My point is I am have hypothyroid for 2 years and on 75mcg daily. These I crush, mix with water and inject at about midday (I hook myself to feed overnight and wait 4 hours). These I crush medicationbworks fine for me so don’t worry. If surgery generously ask them for liquid thyroxine which is easier to administer

Suzanneharb profile image
Suzanneharb in reply toLibuse

hi thanks. I’ve been told I’ll be able to eat eventually? Is that not the case then? So does all food and drink go through your tube? Thanks

tattybogle profile image
tattybogle in reply toSuzanneharb

hi suzanne , my dad had a huge op for this cancer age 70, moved bit of stomach up to replace oesophagus, moved heart to the other side of chest to accommodate a now much smaller stomach where heart was, his recovery was very very hard for the first few months , he wanted to give up at times , but the reason i'm telling you this is that he then had a decent enough quality of life for another 15 yrs , he could eventually eat/ drink fine , it did mean he could only ever have very small potions , and couldn't drink much liquid until long enough time had elapsed after a meal as no room for it in stomach. He was so overweight and totally unfit when diagnosed that to be honest we thought he would not survive the op, but stubboness and will power got him through it somehow . i am sending you my very best wishes , you will need all your strength , but it can be ok.

Libuse profile image
Libuse

Please dont worry. This was 18 years ago. I wasn’t given option of replacement oesophagus. But I am still here 😊 at 72. I am sure you will be able to eat again. Everyone is different but you must take your levo regularly or you will feel ill. Are you having a tube temporarily fitted ? Or being fed nasally?

Suzanneharb profile image
Suzanneharb in reply toLibuse

I did have a tube through chemo but it’s been removed. The hope is I’ll be able to tolerate liquid soon after surgery. But risky but I hated the tube. Also means I can’t get the Levo in that way

I think I’ve decided to say I can’t consent to surgery until they have a Levothyroxine plan and actually show me the liquid version

Suzanneharb profile image
Suzanneharb in reply toLibuse

I’m sorry you had to go through all that too. It’s a horrid cancer. I’m 45 and super fit/healthy so the doctors were very shocked to find the tumour. Sadly they misdiagnosed me for a while, so it was a late stage catch (stage 3, spread to link nodes)

Libuse profile image
Libuse in reply toSuzanneharb

Perhaps you should ring surgery today and request a months supply of levo. When you say tube (into stomach?. I have jejustomy into small intestine and I crush tablets with pestle and mortar but after op you won’t be able to do that yourself

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