Total thyroidectomy stories: Hi I am due for a... - Thyroid UK

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Total thyroidectomy stories

DonnaT86 profile image

Hi

I am due for a total thyroidectomy on Monday and feeling very anxious about this.

I'm scared about these drains in my neck etc.

Can anyone tell me about some positive experiences they have had with this? And hopefully will put me at ease lol.

18 Replies
shaws profile image
shawsAdministrator

Those who've had a thyroidectomy will respond when they read your post.

You will obviously be nervous- who wouldn't be when haveing an op on thyroid gland. Hopefully you will have a good and knowledgeable Endocrinologist - and that you have a quick recovery and on the road to good health quickly.

DonnaT86 profile image
DonnaT86 in reply to shaws

Hi

Yer I do have a great surgeon so I have complete faith in him.

As you say it's always going to be nerve racking with having any type of surgery but thank you so much for your message and well wishes.

Hennerton profile image
Hennerton in reply to DonnaT86

The op itself and the recovery period are nothing to worry about. It is afterwards when you are trying to get medication right that you may need to come here for advice. Some people do very well on Levothyroxine on its own and for several years post op, I was fine but gradually my body felt the loss of the thyroid and various symptoms and illnesses started to bother me. It is wise to talk to your consultant and mention this and ask if in the future, you can be given a trial of T3, Liothyronine to add to your Levothyroxine, if you do not respond well to Levo alone.

I also found from this site that I was not absorbing vitamins and minerals as I had previously done. This is common so keep an eye on iron ferritin, B12, folate and Vit D. I take supplements.

Good luck tomorrow! I will be thinking of you but honestly, you will be fine and another thing, I had absolutely no pain afterwards.

Oh and pure Chilean Rose hip seed oil is brilliant to put on the scar once the wound has healed. You can find it any good health shop.

DonnaT86 profile image
DonnaT86 in reply to Hennerton

Hi

Wow thank you so much for all your advice I certainly will take all of this into consideration, I have heard alot of people say that it take quite some time for the Drs to get the dosage right with levothyroxine, did you have any problems with this?

My surgery is not till next Monday so have a few days to breath lol.

It's weird I worry about the smaller things rather then the bigger problems the actually surgery itself has not crossed my mind much but as soon as I was told I'l have 2 drains in my neck I'm freaking out lol.

Thank you also with what to put into the scar I will pop into Holland & barrett for that

Hennerton profile image
Hennerton in reply to DonnaT86

I do not remember having any drains but maybe they were taken out so quickly I have forgotten. My own panic was having to sign to say the surgeon could do a small procedure while I was awake to check something in my throat and I got in a terrible twiddle about it but on the day it was nothing to worry about.

As for getting the Levo right, I was quite a pain in the neck kind of patient and insisted on regular blood tests to see how I was getting on. I was started on 125 mcg but I felt very over medicated and asked to reduce it. I was all at sea really, which will never happen to you because members here will help you.

You will find your doctor will try to regulate you by your TSH level and unless you get firm, you could be going up and down with your dose to little effect and never feeling quite right. Your important tests are Free T4 and Free T3. Basically they will tell you whether you need to take more or less Levo. Try to be your own doctor and be firm. Sad to say most doctors know next to nothing and usually go by what the lab tells them is right or wrong.

When the op is over come back here and read and ask questions as much as you can, so that you know what you are doing yourself. Don't worry. You will be fine.

DonnaT86 profile image
DonnaT86 in reply to Hennerton

Hopefully I'l be out of it too when they take the drains out.

Great thank you so much for all your advice I'l make sure I come back on here when it comes to the medication and I'l keep on top of it when it comes to the thyroid levels.

shaws profile image
shawsAdministrator in reply to DonnaT86

As you are having a total thyroidectomy I'd make sure you will be given a T4/T3 combination.

I have my gland and was more unwell on levothyroxine which is an active hormone and take T3 only. T3 is the only Active Thyroid Hormone.

Research has shown that most who don't do well on levothyroxine (who have a thyroid gland) feel better with a combination T4/T3.

Ask if you will get a T4/T3 combination as the NHS has withdrawn this essential Active (T3) hormone just a few months ago due to cost and left many patients high and dry.

brighter84 profile image
brighter84 in reply to shaws

I still get T3 on the NHS @shaws

shaws profile image
shawsAdministrator in reply to brighter84

I am glad to hear that.

DonnaT86 profile image
DonnaT86 in reply to shaws

Great thank you I'l make sure I defiantly push for the T4/T3 hormone

Try not to worry. Natural to be apprehensive. The drains don’t hurt, not even when they are removed. In fact I can’t even remember having any pain from the cut. Bit of a croaky throat but that was it. Had op Monday Shopping on Friday. Had worse experiences at the dentist.

The only thing was I woke up in bed and wanted a pee, still woozy from anaesthetic so asked for bed pan. It over flowed. Sheets and nighty soaked. That was a bit tricky with said drains. This happened twice more. In the end hospital night gown as had only taken two. I got fed up with this as couldn’t understand where all this pee was coming from since I hadn’t eaten or drunk anything for at least 18 hours by this time. Asked nurse with my woozy brain on. Turned out the drip was on the wrong speed. Removed directly. No more bed changes for me😂😂.

DonnaT86 profile image
DonnaT86 in reply to Airmed

Awww thank you that makes me feel so much better with the drains uve put me at ease there.

Omg you poor thing with the drain being on the wrong speed now I'l know if I pee myself to check the drains lol.

Hi, my TT was dec 14 and like you i was v scared. Actually despite being termed a major op its also a very "well tolerated" op due to very little post op pain. I was given tramadol after but this was for my back, i have a upper back injury from an accident and the hours of being in a strange position during the op (head back so neck exposed) set it off. I woke up with a drip in one arm (due to low blood pressure) and a drain, unlike the previous poster i refused a bed pan and shuffled to to loo with the drip in one hand and the drain between my teeth while holding onto the wall, quite a funny site lol made the nurses laugh. Just to warn you the contents of my drip looked a bit chopped livery, ir shocked me at first as no one had even mentioned a drain. It was taken out the following day, a little sharp but very quick pain. Tbh the most issue i had was from the dressing adhesive, i had to get them to remove the outer dressing as it was making my neck go itchy and red. My calcium was too low also after op which is very common but vital to be sorted, for me i was lucky enough to be sent home with big supplements. I didn't have trouble eating after surprisingly although my voice was croaky and stayed that way for months, gradually improving, i still think i cant sing high notes as well but thats not an issue for me.

Post tt i found it hard to get the right blood tests as my gp didnt really know enough and my good surgeon wasnt great with his aftercare. Ive been through several endos and finally foundva good hosp/endo through research. Im now doing well on a levo/t3 combo but its vital to get vit/mineral levels right first (b12, d3, folate, ferritin need to be good levels not just over bottom range)

Once my scar healed i massaged it with bio oil, my sister also had thyroid op but she just massaged with no oil, we both had good effect so i think its the gentle massage that helps. You also need to keep yr scar out of sunlight for 12months so i just used bit of sunblock on the scar when out/on hols.

It can be a long op and the general anaesthetic itself takes its toll even without the loss of yr thyroid so you must take it easy afterwards and hve phased return at work. You will be classed as hypothyroid for life afterwards (you can never be medically hyper post TT just over medicated)

You can also apply for free prescription status for life, think my gp gave me the form, each medical card lasts 5yrs and is up to you to renew.

I joined this site and an FB one that both helped me enormously.

Good luck on Monday, take bottle water and some ginger biscuits with you (i was sick then still felt bit sick so just had my ginger bics for dinner!) Xx

DonnaT86 profile image
DonnaT86 in reply to mrsm49

Hi Thank you so much for your message, I'm glad you didn't feel to much pain after your surgery and sure I'l be the same hopefully.

I was told that I could have some issues with calcium if my parathyroid are effected but was told it's easily treatable which is good.

I have had problems in the past with my iron and b12 so I'l keep an eye on that.

I am worried that with having no thyroid at all that I might end up with symptoms of a hypo thyroid, I no I will be on medication to sort this but just hope it's regulates everything pretty quickly.

Thank you so much I will keep you all updated with how Monday goes and the drains lol.

Hi DonnaT86

I had thyroidectomy 2 yrs ago and honestly the surgery was a breeze and I did not need the drains and my bruised neck went away pretty quick. I did battle major migraines for a while that was hiddeous.

I think your battle/stress will begin once you have to try and cope with Endocrinologist that dont listen and that can make you a very angry person...stand your ground and not everything they say is right you and only you know how you feel no matter what those lab results say if you don't speak up at the beginning it's not going to get easier as you go and make sure you get the proper blood test and always always get those results. Im in U.S. so my bloods might be different but the battle and stress are all the same.

TSH - standard

T3 - standard (for me)

FT4 - Standard (for me)

FT3 - I battle for this every time and I get ignored.

Antibodies - I think this is standard...Maybe

DonnaT86 profile image
DonnaT86 in reply to

Hi

Thank you for your message, I will defiantly stand my ground when it comes to the endo consultant and my levels and medication it sounds like it's been a big problem for a lot of people and now that I am aware I'm going to make sure I am on top of it.

At the hospital I had my TT it was standard treatment to put you on T3-only (Cytomel) after your TT for a few months. To be honest I have never felt so well since those first few months. You might want to ask for that. How you feel once you are changed to Levo will depend upon how good a converter of T4 to T3 you are. Don't worry too much about the op, it's nasty to think about but if you know you have a good surgeon don't over think it. Yes, I know, easy to say - I was terrified, but it all turned out just fine. I just kept thinking about the alternative and that helped a bit.

Thank you, Yer that's what I keeo trying to tell myself that it's all worth it in the end, it's coming round so quick it's scary I just cannot wait to be home Tuesday evening and just focus on recovering.

I will defiantly speak to my consultant and the different options for the medication afterwards I'm glad everyone here as given me advice about this otherwise I would never have known.

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