Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Life without a thyroid

Sarahjane87
Posted by

Hi everyone it’s been a while since I posted I’ve been pregnant whilst having my diagnosis and have now had a beautiful little girl ...so I’m due my tt and left neck dissection in just under 3 weeks... 

how long were you all in hospital for?

Also how’s life been without your thyroid? I hear of so many not coping well after and suffering weight gain depression etc this worries me more than the op itself. 

Thankyou x 

Lass
Posted by

Hey Sarah,

Very many congrats on the birth of your daughter!!


Regarding a hospital stay, it's different for everyone. You should def be in for one night, but you might need a couple more depending on what your Calcium levels do.


And for people who have had thyroid cancer, generally life without a thyroid is exactly the same as life with a thyroid. I think what you may have read are stories from people who were hypothyroid and went onto thyroxine. There are a lot of stories out there blaming thyroids and thyroxine for things going wrong - and it's just not true.


You may have a few months to a year where they are tweaking your dose, but for people who have had thyroid cancer - they look to suppress your TSH via your dose of thyroxine. To do this, they give you a dose that takes you to the top end of normal, so no hypothyroid symptoms.



Lass

Xx



Sarahjane87
Posted by

Hi lass 

Thanks for the positive reply, I’m on  another forum for people with thyroid cancer and they keep saying they arnt the same since and have no energy and suffer depression which scares me having two little ones to care for x

Lass
Posted by

Heya,

That's very strange then.


I can't think of one person here who is having those sorts of problems since their op. Though one thing Barbara and I do, is help people interpret their blood test results. If people understand what their results are, and what they should be, then it helps them be proactive in getting them there. 


Also, a number of GPs don't understand that thyroid cancer patients need to be medicated higher than someone else might be. I know my GP is continually trying to lower my dose, and my oncologist continues to tell him no. Lol


Also, some people don't take their thyroxine correctly. So by taking it wrong, your body isn't absorbing the right dose, droppng your levels.


There is also the possibility that there is something else going on too. I felt really tired and bleh a while back, kept asking the doctors who had no answers. Then someone here suggested I have my Vitamin D levels checked. Low and behold, severely deficient. A couple of days of being on the supplement and I was back to normal again.


Then with the depression, that often comes after a cancer diagnosis - regardless of the type. If people don't deal with and process their emotions and thoughts around cancer, treatment for cancer, then life after cancer - then depression can creep in.


Then you've got ladies heading into the menopause and not realising it, and the menopause has a lot of the same symptoms as being hypothyroid.


So all of these things, and more, we help people with on site and through the helpline. As I say, there might be a few dodgy months as they adjust your dose. But after that you should feel exactly the same as you did before the op. And if you don't, we'll try and help you find out why.


Lass

Xx



Sarahjane87
Posted by

Thankyou so much I really needed to her some positive news.. I think these postpartum hormones aren’t helping me. I keep thinking I won’t wake up from the operation which is silly I know. I was wanting to delay it but I know it’s got to be done.. how long would you say I will need help with the kids for post op? X

safcfi85
Posted by

Hi Sarahjane, 

I hope I can offer you some reassurance. I’ve been without my thyroid and taking thyroxine since March and so far I’m feeling fine. I’m at a similar stage in life to you, I’ve a one year old and my other little boy is three in September, life is full on but I’ve never felt as though I couldn’t keep up with everything. I’ve also found a bit of exercise is manageable and with sensible eating (and not drinking loads of wine) maintaining a healthy weight and maybe even losing a bit hasn’t been impossible. 


My mum has an underactive thyroid and has been taking thyroxine for about 20 years. She is 65 and still working, when she isn’t she’s running around after my boys. She enjoys doing yoga/pilates a couple of times a week and she she has recently lost weight when she wasn’t overweight to begin with. 


Everyone is different but I just wanted to offer you a couple of examples of life without thyroid/on thyroxine where all has been well. 


I hope this helps x  



Lass
Posted by

Heya,

That's a tough one to answer because everyone is different, and it very much depends on what the doctors need to cut through and remove during the dissection.


At a rough estimate, I'd say you won't be able to pick up a child for at least a month. Recovery from a neck dissection is roughly 4 - 6 months, but as I say, it depends on what needs cut through to get all the bad bits out.


Make sure you get some physio exercises and massage techniques from your doc to help with recovery, and be kind to yourself. Get yourself plenty of pillows too so you can prop yourself up when you sleep, as it won't be comfortable to lie flat for a few weeks. And make sure to take your pain killers and anti-inflammatories as they will speed up recovery too.


Lass

Xx



Sarahjane87
Posted by

Oh gosh really..my surgeon said I would be okay after a few weeks. 4-6 months is a long time isn’t it x 

Sarahjane87
Posted by

Hi thankyou so much...may I ask if you had neck dissection aswell and how recovery was? X 

Lass
Posted by

Yeh, we get a few people saying they were told it would only be a few weeks to recover. But in reality it is in the months.

I've not personally had a dissection, but there are a few folks around here who have and I'm sure they will pop in soon to let you know about their journey.


You can also search in the group for the word dissection and you'll find posts from other people talking about it if you want info ASAP.


Hope that helps,


Lass

Xx



boooche
Posted by

Sarahjane87,

First off, Congratulations on the birth of your daughter.

I cannot tell you what a neck dissection is like but I had my completion surgery on March 8th and I feel fantastic.  Like you, I was nervous about living without a thyroid.  Then I found this site with all of these wonderful people who are there when you need them.

I was only in the hospital over night for each surgery and my recovery for each was about the same.  I was back to my usual routine in about a week except for heavy lifting (honestly, who wants to do that anyway).

I have not experienced any weight gain or loss. I am diligent about taking my levathyroxine at roughly the same time every morning.  I keep my bottle next the bed along with a tall glass of water so when I wake up, it's the first thing I do before my feet hit the floor.

My best advice is (as hard as it will be with small childern), put yourself first for a few days after surgery.  Let others help and ask for it when you need it.  

Wishing you all the best.

Linda T

jto
Posted by

Hi Sarah Jane,

I am currently in hospital after my TT and right neck dissection.  I had the same worries as you - not waking up after the op etc but it all went fine.  I have a 4 yr old and a 3 month old so I get how concerned you are about your little ones. 

My doc also told me about 3/4 weeks recovery but as Lass says, everyone will be different and it will depend what is done during the op.  I am 2 days post op and should be going home tomorrow - they are waiting for my drain to finish so fingers crossed! The pain was never bad and I have only had to take paracetamol and ibuprofen.  It is more tight and stiff than anything else but I have some mobility already which is good.  My throat was a bit sore inside but again was nothing too bad.


If you have any questions or worries feel free to contact me xx 

Jo xx

Chridster
Posted by

Hi Jo,

Glad you're recovering well and fingers crossed for that drain. Mine just wouldn't stop so I was in a couple of nights too.

All the best

Chris
tigerlilly13
Posted by

Hi Sarahjane

I had a Lt neck dissection. For the first 2to3 weeks it was a struggle because I had an infection which limited what exercises I could do. My neck was stiff and my left arm was weak. Once the infection cleared things improved quickly.

If it wasn't for the infection I would have went back to work 8 to 10 weeks post op ( I had an open wound and i am a neonatal intensive care nurse ). My voice returned to full strength after about a month ( there was issues with the nerve.) 

I have low calcium that's on going but easily solved.

My journey except the infection was straight forward. I was so bored not working. I was begging them to find me a temporary clinical job.

Hope yours was as straight forward as mine - the infection 

X

Tigerlily 

Sarahjane87
Posted by

Ho jo 

I hope your op went well Thankyou for replying especially whilst in hospital I hope you get home tomorrow.i bet it’s been hard leaving your children I’m an emotional wreck already. How long did your operation take?x