Living with Total Thyroidectomy and cancer

Heya Joggy,

I'm not sure I know exactly what you're looking for?

In general, life before and after a TT is exactly the same. After just involves a tablet or three, and that should be the only difference once your dose is sorted.

Does that help at all?

Lass

XX

Hi Joggy

i had a total TT on Tuesday 9th April and also had lymph nodes from my neck removed which had turned black. I am waiting my results from pathology to find out how much has been removed and is cancerous.

i am really tired at the moment and think it’s a combination of the operation and no thyroid. I have been started on a dose of 100mg of levothyroxine and have to get blood tests in 7 weeks. 

It’s a start of a new journey for me. I know somebody who had the operation 15 years ago and if she hadn’t told me I would never know. She runs, skis, hill walks and has a very active life. My worry is a very vain concern that I will put on weight.

Sorry this might not be the answer your were looking for.

Aw thanks...that's quite inspiring.

My panic was due to lack of info...my consultant put the fear of God into me by saying lymph nodes were black so cancer had spread. He then leaned over and squeezed my hand saying that I was so positive. Think I have read too much into that kind gesture.

Hi Runner

Sounds like we shared the same hobby.

I had my total TT on Mon 8th April so we will be about same stage of recovery. I too am anxious about weight gain...but actually have lost a stone?. My GP suspects that cancer has spread to my ribs.

bring it on..We will fight whatever poop is thrown our way.

I'm on 125g of thyroxine...lovely to chat to someone who is travelling the same journey.

I was a bit freaked out by consultant telling me lymph nodes were black

Hi Joggy,

I would think everyone s experience will be different, but I will tell you about mine if it helps. I went in on 8th March had total thyroidectomy, central neck dissection and side neck dissection ( 70 lymph nodes removed). Fast forward 5 weeks and my scar is healing well, I can do most things about the house, just trying not to heavy lift at the moment. I just had my RAI treatment ( nothing to it I got through 4 dvds and some snacks) on Monday and staying at my parents house at the moment ( had to stay away from the kids) Will return home Saturday afternoon. Im returning to work next Tuesday. 

Id say the hardest part is dealing with the stress and anxiety that comes with it. I keep myself busy and look for the positives, I have my kids so thats motivation enough for me.

I'm at the stage of trying to get my medication right. I was on levothyroxine but was coming out in hives so I'm now on Liothyronine 20 mg twice a day. I haven't had any blood tests done yet so will put an appointment on at GPS to get that done next week to see what's going on. 

Hey Jay,

There's no point in getting a blood test done next week as your hormones won't have balanced out yet after the change, and there will still be a lot of T4 in your body.

You should be looking to book in a blood test for the week of the 27th of May, as you changed to the T3 roughly around the 4th of April.

When you book in the test, make sure they know they need to test the T3 as well. Usually a TFT only checks T4 and TSH, but that won't work for you as you aren't taking T4. Also, don't let the GP change your medication when the results come back. Phone your specialist nurse or consultant, give them the results, and ask what they advise, then do that.

Lass

XX

Hey Runner,

If your operation was on the 9th of April, then the tiredness you're feeling won't have anything to do with having no thyroid. It's much more likely to be the after effects of the anaesthetic, as well as a lack of decent sleep due to stress/anxiety.

Your blood tests are due in 7 weeks because that's how long it takes for your body to rebalance and use up all of your natural hormones. So it would only be around then that you'd start to notice any hypothyroid symptoms.

But as soon as the blood test results come back, your consultant will adjust your meds if needs be and that should knock any problems on the head before they become silly. But again, don't let your GP change your dose, always go to your consultant. A number of GPs don't know about the TSH suppression needed for thyroid cancer patients, so they try to medicate to 'normal', which isn't right for us.

Lass

Xx

Hi Joggydoggy

I think we do have similar interests. I haven’t been running yet but building up strength walking. I had a very sore back and limited mobility in my neck. Yesterday I went to see my local osteopath and she has given me my neck mobility neck.

I have a CT scan next Friday to discover if it has spread or not. I have a feeling it has spread to the lymph nodes near my jaw as I get pain there. I hope yours hasn’t spread to the ribs.

One of the most difficult things I am finding is navigating the NHS! Each department is great but trying to work out the ordwr things should go in. 

Good Luck