1 day post-total thyroidectomy questions from a 17 y/o !

Hello! My name is Mika, and I'm a seventeen year old autistic girl! I'm one day post-op after having a total thyroidectomy yesterday morning, my surgeon also removed a couple of parathyroid glands and lymph nodes that were enlarged. Admittedly, I didn't want to go through with this surgery at all, but with a toxic nodule (most noticeably causing a resting heart rate of up to 170 bpm) on the right and cancer on the left, I understand deep down that there was no choice and no way to save even half of my thyroid.

I'll be honest, I'm so, so scared. I'm scared for the future and right now I'm feeling incredibly sad, I can't stop crying. I can't stand change, and to know that my entire life now depends on the adjusting of the dosage of a hormone I can no longer create myself makes me feel so overwhelmed and alone. My incision pain is minimal, thankfully, but I haven't been able to sleep at all because I can't fall asleep on my back and I always use one flimsy pillow, using four is indescribably uncomfortable to me and I'm so, so exhausted which I feel isn't helping my mood.

Has anyone else had this problem? If so, how did you get to sleep at all?

But my main question is this...has anyone else experienced terrible phlegm after their thyroidectomy? Every time I lay too flat, mucus begins to build up in my throat and I can't breathe, drinking water doesn't help and I just need to cough until I cough the right way to free my airways again. It also happens sometimes when sitting up or walking, and it's genuinely terrifying. My doctors said this was because of the anesthesia and told me to just take deep breaths while laying elevated and nothing else about how to fix it or how serious it is, will this really work, or should I see someone about this? Does it go away? I'm so scared, please, any advice would be majorly appreciated.

Also, just...does it get better? Is there anyone out there who feels relatively normal on their thyroxin? Do you recommend the morning or the evening for taking it? I wake up at a different time everyday, so I feel the morning wouldn't be ideal unless it's seriously better...my surgeon said it wouldn't matter, but I've heard different sides. I'm starting mine tomorrow, 100mg to start off, and I know not to expect too much for a long while, but I've heard so much about T4 and T3 and no one has even told me what these are, I've heard you need supplements, this and that and I'm so overwhelmed and confused and scared and I just need a shred, an inch of comfort.

One more question I have is that is it normal to experience a major loss of appetite after this surgery? I can't even stomach lots of my favorite foods and it makes me really sad, I'm just so sad and alone, any response of any kind would mean the world to me. Thank you so much for your time, and to whoever is reading this, I'm wishing you nothing but comfort, happiness, and lots of love! Stay safe!

Kind regards,

Mika !

[fuchsia-pink]

Please don't worry. I understand how devastating this must all feel but to answer some of your questions* yes, if you get your meds right going forward, there's no reason why you shouldn't feel tip-top again. But be patient - it may take a while to get your meds right, and it's important to go slowly and only make baby-step changes

* it's not too bad taking meds every day to keep you healthy. Just make it part of your daily routine [and if you live in England, once you turn 18 you are entitled to an exemption certificate - apply using a form you get from your GP so that you don't have to pay for prescriptions].

* it doesn't matter if you take your levo first thing, last thing, or split the dose - whatever works best for you - but it's best taken on an empty stomach, just with water, with nothing else to eat or drink one hour afterwards or two hours beforehand. Going forwards you should have early morning blood tests and leave 24 hours from your previous levo (to get a good representative level of thyroid hormone) - so you may need to tweak your dose the day before.

* the jargon can be confusing - but have a good rootle around the Thyroid UK site, look at helvella 's excellent glossary [in "pinned posts"] and read the questions and answers on this forum

It's a kind, helpful forum - make the most of it and people will help

Please don't be overwhelmed x

[Hennerton]

Hello Mika, I am so sorry you are feeling so sad. Do you have anyone to help you? I hope you are not dealing with this on your own.I had a thyroidectomy thirteen years ago but did not know about this site and struggled on alone. You will receive much help here so do not feel frightened about the future. There will always be someone who has an answer to your questions.

Regarding the phlegm, no I did not suffer it and if it continues to distress you, do ask again at your doctor's surgery or perhaps the surgeon who did the operation. Were you given a helpline number when you were discharged?

I assume you are using four pillows to help this or were you advised to raise yourself up by the hospital? I used the usual one or two given in the hospital and the same afterwards at home.

Your thyroxine can be taken at night or in the morning, with a full glass of water and no food or supplements for an hour. Other people may leave longer.

I think you will find that T3 combined with T4 will be what you need long term and if I were you I would start asking what the position is in your area. Your GP will know. All areas seem to have different policies. I am in Oxfordshire and receive it on the NHS. Others are not so lucky and have to source it themselves. If you need to source it, ask here by a private message.

You also need to keep track of vitamins and minerals to ensure they are at good levels. These are B12 and Folate, Iron, ferritin and vitamin D.

Have you been given chewable calcium? You will probably need this if your parathyroids have been disturbed. Take it the moment you feel the tingling sensation, usually around the mouth area. It stops almost immediately.

No, I did not lose much of my appetite but was definitely not feeling normal.

I hope this helps a bit but I suggest you just keep asking until you begin to feel happier. Someone will almost certainly have the answer.

[tattybogle]

I'm not surprised you feel so scared, i love change , but i'd feel the same as you in that situation.This site is full of really kind knowledgeable and experienced people, so you've made a good move in finding it, and having done so you will be in a much better place to find your way through any difficulties you have with replacing your hormones.

But do remember when you are reading on here, that many people take Levothyroxine and then have no problem .

I know people for who it really can be' just one little pill a day'.

My Auntie was one , she had a thyroidectomy at around your age because of Graves disease and lived a very full and active life, she went on to teach in a rural school in Kenya and lived like the locals in a hut, and then when they had to leave due to Independance and Kenyatta, she popped off to Manus ,a small island off Papua New Guinea, and taught farming there, then she came home and bought a farm with all the money she'd saved by living cheaply in the bush , and was still looking after sheep well into her 70's.

There's plenty of horror stories on here from people who had difficulties, but let's hope you turn out to be more like my auntie.... living in a mud hut and chasing goats round the village is optional

Really hope you can feel more comfortable soon and get some sleep, lack of sleep just makes everything so much harder. Take care xx

[madge1979 in reply to tattybogle]

A lovely story tattie.. about your Aunt ... and your kind words will soothe gocatboygo I’m sure .. you’re a kind soul ..

mx🌹

[Hidden in reply to tattybogle]

Tattybogle, there's absolutely no way for me to express in words just how much I appreciate you taking the time to pass on such reassuring words. The story of your aunt truly touched my heart, I hope you don't mind, but I shared it with my mother as well and she found it delightful. She sounds like she was a positively incredible person who lived a full life...thank you so much for sharing her story. It means so much to me, I've found next to nothing but horror stories and struggles on here so your reply is incredibly reassuring...I hope more than anything that for me, this can become 'one little pill a day' just as it was for your aunt. <3 I'll have to take a rain check on those goats for now, though! Thank you so much, again!

[tattybogle in reply to Hidden]

Glad it helped xx I'm so pleased to hear you are still with us , and haven't yet expired from excess phlegm and lack of sleep, but i guess you'll have to tough it out for a little bit longer post surgery before you can get to lie in you comfy position to sleep . I'm totally with you on the habit of only feeling relaxed and safe to sleep in that position. I had a back problem once and had to lie on my back with my head straight for months ,and i find my brain won't turn off to sleep unless i'm on my front with my head 'under my wing'..... i remember how horrible it was, so you have my sympathy, but i'm sure it will heal up faster than you think... so hang in there.

Looking on the bright side ... if you had to pick a year out of your life to feel really lousy and not be able to do things , then you chose well, 'cos 2020 is not going to go down in history as 'a good year to have fun' anyway. My daughter is 22 and Covid has cancelled her driving test for the second time this year , so she's not a happy bunny, cos i have to go as passenger to work and back every day, which was fine in the summer , but now it's dark and i'm a nervous wreck being a passenger in the dark with a learner driver. She was saying , "do you realise how frustrating it is for me to be forced to have a passenger who can't see in the dark, telling me to slow down, when you know i can drive perfectly safely at 50mph .... i just want to be able to drive myself to the gym to get rid of some stress, but instead i'm stuck with my neurotic panicky mum everywhere i go. I was really looking forward to 'being a grown up'... this isn't what i had in mind"

.....we love each other really but my point is, you're not missing out on much this year.

So here's hoping that by the time life is more normal , you'll be feeling well enough to come out and 'play' again too.

Best wishes.

Tat

X

[Jai03]

Hi gocatboygo, I am 4 weeks post Thyroidectomy. I also had cancer cells in one half of my thyroid and a multi nodule goitre in the other. Although I am a lot older than you , I was also upset and overwhelmed by the thought of losing my Thyroid and the possible life changes it would bring. I also had the issue with phlegm after surgery. It lasted for about a week for me. It was painful to try and cough and clear it for the first couple of days as my throat was quite painful for a few days. I think the reason for sleeping with the head raised up is partly to help the lungs clear any congestion plus the drainage tube fitted into the neck that collects the small amount of blood from the incision. I tend to sleep with lots of pillows normally so it wasn't an issue for me. I have learnt so much from this site, there are so knowledgeable people who share information and offer support. I read the daily digests each morning after taking my Levothyroxine at 6am and before I know it, an hour has sped past and I can have my first cup of decaf tea! I am on a starting dose 125 of Levothyroxine. It was started the day after surgery. It does become a routine and the initial panic about relying on a tablet and not your own body does subside. I hope you start to feel better soon.

[RdeR]

Hey Mika. Go see an Endocrynologist and ask him to change your prescription to a drug named EUTHYRAL.. I did and have had no trouble since 3 years

[Hidden in reply to RdeR]

I'll definitely keep that in the back of my mind, I've not heard of euthyral, but I may bring it up with her one day, thank you very much!

[Batty1]

You are not alone ..... hang in there! As far as medication best taking times honestly this is a personal preference and it would be beneficial if you got a watch like the (fit bit versa) which would allow you to set alarms to remind you to take your meds, I do this because if I didn’t (HA) I would forget but Im old and take lots of meds!!

[RdeR]

Hi Mika

Happy to see your response. I can send you the composition of Euthyral which is :- 100 microgrammes........ levothyroxine sodique and 20 microgrammes ....... Liothyronine.

Hope it helps and good luck with your health. My TSH was 27.2 with thyroxine and came down to 0.04 within one month when my prescription was changed. Ciao RdeR