So I had a total thyroidectomy on Saturday morning. Everything went perfectly, my 4 parathyroid glands and vocal cords are preserved (yay!) and I’m beginning my long journey back to the UK tomorrow.
The aftercare at the hospital was abysmal, I wasn’t even seen by an endo (or the surgeon!) after the op. They simply discharged me and told me to come back in a week for a blood test, then I’ll be started on thyroid meds. A week without any meds doesn’t sound right to me?
I’ll be seeing my doctor in the UK on Thursday, but until then I’m not sure whether to start taking T4/T3, and if so how much. Any insight?
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These decisions need to be taken by the doctors whose care you are under. Do you know if the thyroidectomy was total or partial. After a week your T4 levels will have halved but fT3 may stay fairly stable. I don't know if it's usual to wait a week before starting patients on levothyroxine.
Does your UK doctor know you are having a thyroidectomy? Have they agreed to take over you care?
I'm not sure how you plan to get back from Turkey, if there are any flights, I guess you would need to ask the doctors whether it is OK to travel. If you have any questions you should put them to the doctors in Turkey as they are responsible for your care, they should be able to explain why they need to see you in a week rather than straight after the operation.
I had a total thyroidectomy, and yes my UK endo knows about it. I’ve been declared fit to fly so all good in that aspect. Just confused by the lack of medication, everything I’ve read online says you start taking levo straight after the operation
That’s good. I would be tempted to start levothyroxine fairly soon, especially if you start to feel excessively tired. You may do OK on levothyroxine so it’s worth giving it a try for a while before introducing liothyronine.
I think there may have been some kind of miscommunication as to the lack of meds being given to me by Turkish doctors... To be honest the entire thing was very badly organised. I never met my surgeon (yes really), before or after. In fact I didn’t see him at all! No post op instructions or aftercare advice. Didn’t even see an endo after the surgery. A general doctor just decided I was fine to go home and discharged me.
I shouldn’t complain too much because my surgery went perfectly, all parathyroids preserved etc, but to be honest I felt more like an animal at the vets than a patient in a private hospital!
They were very understaffed due to coronavirus, as well as there being the language barrier, so maybe that explains it.
I think I’ll start taking a small dose today, because I don’t want to wait until I become overly hypo. Will see my regular doctor when I get home and take it from there.
Can I ask how come you had a total thyroidectomy in Turkey and not UK? I’m amazed that you are able to fly after such an invasive operation and do hope that you have help with luggage etc as I was told not to lift a thing for at least 6 weeks after my partial. Unless I knew enough about it I don’t think I would be messing around with meds until I had seen my consultant after blood tests. Have a safe journey back.
I was in Turkey for a holiday and the surgery was an emergency. I had no choice but to fly yesterday as I was worried the last flights would be cancelled, and sure enough they have been. So the one I got was the very last one! I’m doing all of this alone but almost there... just one flight to go. Thanks for your input
Most likely they are having you wait a week to make sure you don’t need RAI or at least that’s why I had to wait for my meds. I wouldn’t just start taking meds until your prescribed by your Endo and have the appropriate tests.
I’m glad your surgery went well. The surgeon came in to see me briefly the next day to tell me all was well with my calcium. I was given my first dose of medication that morning at the hospital before my breakfast. If you had a full thyroidectomy it doesn’t seem right to wait that long but I’m only going by my experience.
Thanks for sharing your experience. I do agree that it’s awfully long without meds, and everything I’ve read about thyroidectomys in the UK says meds are started straight away. I arrive home tomorrow so will contact my doctor straight away
Hello, Glad to hear youre doing well. After my thyroidectomy (UK NHS) I was immediately started Liothyronine as I was to be having Radioactive Iodine and a few months after the op. After the radioactive iodine I was prescribed Levothyroxine. Everyones different, Im sure you will get support/advice from your endo. Good Luck.
I had a Total Thyroidectomy back in January (23th) in the U.S. The very next day I was started on 100 mg of Levothyroxine. Post-op visit with my surgeon was scheduled for 1 week later, which also included test for calcium level. Endocrinologist visit was then scheduled for 1 week after that. Lab work done that day. Levothyroxine was reduced to 88 mg. Next lab work scheduled for 10 weeks after last.
I started a low iodine diet on February 26th in preparation for RAI scheduled for March 11th. I had 2 thyrogen injections prior to the RAI. I only required 66.4 mCi of radioactive iodine. Body scan done 9 days later showed no signs that my thyroid cancer had spread.
Going without medication for a whole weeks sounds terrible to me. I was very very sick a week later (although I am one of the unlucky ones), even with the medication. I've had to go off all medication for a week in the past as well, and it was not at all pretty.
It's now Tuesday afternoon, so from Saturday morning so you've now had 3.5 days since the op, about 2.5 when you wrote this question. How are/were you feeling right now? You're roughly halfway through the half life of the T4 in your body, and several half lives into washing out the T3. In my experience there is a big crash around day three, and then it's more slowly downhill from there.
Even if you are able to start on your hormone, then you should prepare for feeling pretty terrible, because it can be a shock to the system swapping over from your own homemade supply to synthetic hormone, even if you are in the very very lucky group who do well on it straight away.
In your position I would be pretty concerned to make sure that hormone will be prescribed at the appointment in a week's time. I also had to go in for check ups about ten days after the op, but it was more about confirming the op was a success than to adjust my meds. In the past in the UK people were often very badly served and you hear stories of people being expected to manage without a thyroid or hormone, so if things are quite shoddy in this hospital it's possible they have no intention of prescribing
Be very kind and gentle with yourself, rest a lot, and be aware that having no thyroid is a very serious state to be in.
I was put on Liothyronine straight after my thyroidectomy. I believe it was 60mcg, which they eventually thought was a bit too much for me. Although now that I self medicate I'm on considerably more, but that's another story!
Being on a plane I've found extremely uncomfortable while I've been undermedicated. Good luck on your journey, and just do whatever you need to do to cope.
I hope you get onto a decent dose soon, and are able to get a decent bit of rest and relaxation!
I was started on levothyroxine (100 mcg) next day and calcium immediately after surgery. The surgeon had me fill prescriptions the week before my surgery. He had everyone take calcium for six weeks; as he explained, even when parathyroids remain intact they may be “stunned” and take a few weeks to recover.
After two days I skipped the Levo for another two days then restarted at 50 mcg, then gradually increased to 88 mcg after three week follow up.
Sometimes manipulation of the thyroid during surgery can cause a surge of thyroid hormone which can take some time to wear off (as has already been explained regarding the long half life of T4).
I never in my life (then 72 years) had my thyroid levels checked; three months after my surgery was the first time they were run — and then only because my primary care NP thought it might be a good idea.
Other than having an FNA before surgery I didn’t see an endocrinologist until six months after surgery - and that was a disappointment.
Here in the US it’s pretty common to be started on T3 only at around 50-70 mcg while waiting for RAI (if the surgery was for cancer) then switched to Levo after RAI.
Thank you for your helpful comment and sharing your experience. My surgery wasn’t for cancer, so I think I should already be taking some hormone replacement by now. I land home tomorrow so will be sorting that out straight away.
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