Any advice please?

Hello!

Sorry you have found yourself here. But here is a wee blurb of how I found having no Thyroid.

I had a thyroidectomy (complete thyroid removal) in two halves. Both procedures were pretty straight forward and was back up on my feet the day after - feeling pretty good, albeit a stiff neck. Within a fortnight, I didn't feel any different than I did before!

Obviously after having all his thyroid removed, he will have to take levothyroxine once a day for the rest of his life. They are tiny tablets and missing the odd dose won't do to much harm. They may play about with the dose to make sure it's right and regularish blood tests to make sure it stays within normal limits to keep him feeling full of energy!

L

Hello L,

thanks so much for coming back to me and it is nice to hear and speak to someone that has been through a similar thing to what my boyfriend is about to experience. He doesn’t really like to talk too much about things but I personally feel getting some knowledge from others who have been through similar is very important and I want to be prepared to help anyway I can. His main worry is about what the scar will look like afterwards as he does struggle with confidence and self esteem already and this will effect him. As well as that he rides BMX so he still wants to have his energy levels as he does now.

he will be getting his full thyroid removed aswell as some lymth nodes as it has spread slightly already and then 2-3 months after surgery they will give the radio active iodine.

is there any recommendations you can give for the first days of recovery, anything I can do or get to help with the healing process?

foods you would recommend?

thanks so much!

jords x

I had the last part of my thyroid removed in March - the scar has faded quite considerably. I wanted to keep my scar - as silly as it sounds...I wanted the war wound to show for it. Although, a lot of people use Bio-Oil and that seems to improve the look of scars quicker. I know someone who had their thyroid removed c.10 years ago and you wouldn't even notice the scar unless they pointed it out and you looked at it dead close up. 

Just take it easy, plenty of Netflix etc. I didn't have any issues eating my normal diet straight after although it takes a bit of time to get use to swallowing with such a tight neck. Maybe soups, ice cream etc. 

The Phycologists at the local Maggie's centres are great and may be able to help him overcome any anxiety he has about life afterwards!

L x

Hi Jords, Marimba is my lovely wifes log in name! We have both had a cancer hers Lung mine Thyroid , I am 79 and 75 my lovely wife! Both very active after our operations! Mine started 6 years ago and my second lot of Iodine treatment was recent 7/9/20 then a CT scan on the 11/9/20 with the result phoned through to me2 days later with the terrific news that there is no disease or any sign of Cancer! all I take is 175mg of Levothyroxine each morning! Iodine treatment is a walk in the park! In for 4 days they say! I have got out in 2 each time by a method that works for me, eat as much chocolate  and drink as much water as you can stomach! exercise in the bathroom (no Camera there) try and get a sweat on then frequent showers as the radiation exits through kidneys hair ,skin pores, you get the idea! May feel a little tired and possible loss of taste! they said possible dry mouth! I only had a dry mouth but sucking lemon sweets worked for me! Just recently sold my push bike but kept my yacht! so tell your boyfriend it is beatable! Being in isolation is like doing the time but youve done no crime! Mine has been a 6  year journey! Cheltenham and Gloucester Oncology have and are of the best!

Hello to you both! Thank you so so much for you kind reply! It is honestly so humbling to hear that you are both recovering well and feeling good after your journeys through cancer! You sound like a lovely couple & im just sorry that you have both had to go through Cancer but very happy to hear you are both out of it on the other side.

My lovely boyfriend Pete is only 34 and I am 30 so as you can imagine I have been very worried about him & he is also worried and anxious about what’s to come! I’m glad to hear that the iodine is a walk in the park. Thank you also for the tip on the lemon sweets I will be sure to get him so of those :) haha 

How long did you have to isolate for after your iodine? Did you go near people at all as I am told it’s not very safe to come in to contact with others afterwards? They have said he will need to stay in hospital for a few days before he can go but I wasn’t sure if he then needs to isolate again once he comes home? This would be useful to know from you. 

also in regards to eating what kind of foods would you recommend he eat in the first week after his surgery? I want to make sure I’m prepared to look after him :) 

really funny you said that your from Cheltenham as we have both just been there on a day trip today to enjoy a fun day out before his operation this Friday. Sounds like you had a great team there. Pete is getting his out at Frimley Park hospital so I hope that they are just as good. Thank you both again for your help xx jords

Hi Jawd 

Stacks of sweets were in the isolation suite along with a Pink Gin and Tonic in the fridge! Cheltenham is so posh!lol

Foods I was eating normally and immediately after my ops I was on soups home made of course! you can make quickly if you have a blender! The other useful drink was High Energy drinks Ensure Plus if he doesnt feel like eating!

You can take in what food you like, energy bars  dark chocolate 80% cocoa though! You will have an advice leaflet! I see he is a mere boy and will be worrying more than us oldies! He will be fine as long as he has a good woman looking after him! Is that you? lolTo give you an idea of the after treatment schedule, 2 days after treatment seperate crockery and cutlery, to be washed separately, Wash your hands thoroughly before during and after prepping food! Toilet ...flush twice after use! Contact with people at least 1mtrapart and separate beds.....sorry about that!

Pregnant women and children

Contact with people you will have details as Pete is discharged with all the info you need.He must carry the yello card with him at all times in case of any need for outside assistance mine ends on the 14 of October!

Just sit either end of the sofa watching TV same in the car one in the back! I drove home when I was discharged and was down on by boat a couple of days later! So you see its not so bad! He will have his CT scan shortly after 2 maybe 3 days then results a day or so after! Cheltenham and Gloucester are nothing short of Fantastic, in my opinion!

Since Covid has been around we are classed as vulnerable but I refuse to be classed as a housebound prisoner! We go out but take common sense precautions! No pubs or Restaurants ( My my good friend owns a Brewery) so beers are on tap!}

Forgot to say ,

hope this is helpful and wish you both health and happiness on your journey!

Marimba and Me!

Hi Jords,

I do hope Pete's OP went well today. How are you? Hope you're ok x Sending healing thoughts x

Please may I ask, what was Pete's symptoms which led to him going to the Doctor?

I have a lump in my neck and am awaiting an urgent scan. A thyroid blood test came back as normal. I am having trouble swallowing so my GP sent me for more blood test and a chest x-ray on Wednesday... All the bloods taken on Wednesday came back as satisfactory today. Still waiting on the results of the x-ray. 

Google is playing havoc with my mind.

Kim x

Hello Kim, I hope you are ok!

thank you so much. Petes operstion went very well yesterday. He is now recovering from surgery but the surgeon said all went very well

Syptoms wise for the past couple of years we noticed that Pete was having huge food and sugar cravings and that his energy levels were a lot less. He’s a very healthy, fit person and he eats well but the amount of food that he was needing was increasing, more specifically sugar so he initially visited the doctor to ask about that but they dismissed him. He later went back again as one of my close friends is a holistic naturopath doctor so she reccomend he get his T4 and T5 thyroid checked, this was just before the lockdown so was due to go for tests but they got cancelled because of covid. Then in July he found a lump on his left collar bone, he then went back to get it checked they told him it was a fatty tissue but he pushed for more tests, so they sent him for a ultra sound, again said it was nothing to worry about and sent him away. If he hadn’t have pushed for a biopsy we wouldn’t have found out it was cancerous. 

We only found out the results in September so it had expanded to stage 2 so we had to wait a while but since that point the hospital has been amazing getting his operation scheduled in super fast. 

I wish you lots of luck with your results I do hope it’s the news your hoping for. What side effects are you having? We are happy to help however we can during this process. I find asking others questions is so helpful.

be sure to have a healthy diet lots of organic fruit and veg, no sugar or processed foods. Excervise is good too even if your tired.

i hope this has helped? Any questions just let us know :)wishing you all the best and try to not stress too much! Xx

Also his lump was fairly hard to touch, kind of feels like a knot in a muscle. My mum had a fatty tissue on her leg and that was much softer. Make sure you push for a biopsy! Don’t let them turn you away based on the scan, also ask for a T4/T5 thyroid check if you can!