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Thyroid cancer

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

Shocked

Lass
Posted by

Regarding sleep, have you built a slope up in your bed so you can lie at roughly this angle...... >..... The top line. Lol

Lass

Xx

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

Potter37
Posted by

No will try that ,thank you

The more a monkey climbs a tree ,the more it shows it’s arse 
Potter37
Posted by

I read something you wrote I think on taking the thyroxine,same time 40mins before food or drink(I could be talking crap) and they haven’t gone in depth about it just passed me paperwork stating it was vascular and capsular invasive,is it something to worry about?

The more a monkey climbs a tree ,the more it shows it’s arse 
Lass
Posted by

Lol. Close! 

Take it first thing in the morning with a mouthful of tepid water. Then wait a minimum of 30 mins, 60 is better, before you eat or drink anything else including other medications. 

Iron or vitamins with iron needs to be taken 6 hours after thyroxine. Calcium or vitamins with calcium, 4 hours after. 

I'd try not to worry about the vascular and capsular invasion until after you've had your RAI and got the results back. Capsular invasion is quite common, and usually doesn't mean anything.

Vascular invasion though is one of the two ways that thyroid cancer spreads. It's usually either through your lymphatic system which papillary likes best, or it's through the vascular system, which is what follicular likes best. However, vascular invasion DOES NOT mean that it has definitely spread anywhere. So there's no point in worrying about it. The RAI will both tell them if it's spread, where to, and usually also kill it off too. So everything in one fell swoop.

So please don't worry about it (Easier said than done I know).

Lass

Xx

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

Potter37
Posted by

Thank you so much for the info ,I feel like I have just been thrown out the door with no information, I just feel so lost and I can’t believe I have cancer,I feel like I want to cry but I can’t 

I feel let down and angry ,exhausted and emotional all at the same time ,it’s so hard not to worry when you hear them words but I do understand where you are coming from Lass 

The more a monkey climbs a tree ,the more it shows it’s arse 
Lass
Posted by

Yeh, different people need different levels of information. So they tend to go minimalist, which isn't great for those of us who want to know all of the ins and outs of it all. 

Have you heard of the 5 stages, I think it's 5, of grief? That's pretty much what you go through when you're given a cancer diagnosis. Have a Google, and you should find some strategies that will help you come to terms with everything. It will all talk about grief, but if you think about it, that's what's happening. You're grieving for the life you had, that you have lost for the moment, and the future you thought you were working towards is now uncertain, so is lost too. So it's all relevant. 

When folks are worrying about spread, then they are usually thinking worst case scenario that they are going to die if it's spread. Cause that's what the media shows us. Which is where I always spring out of the darkness, arms spread, and say TA DA! Lol. I am that worst case scenario of having thyroid cancer spread out of the neck, and I'm still alive! The plan is for old age to get me first, and for reference, I'm 38, diagnosed at 30. Lol

Lass

Xx

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

Potter37
Posted by

Just read my diagnosis it’s says capsular and vascular invasive follicular variant papillary thyroid carcinoma,sorry for taking up so much of your time

The more a monkey climbs a tree ,the more it shows it’s arse 
Potter37
Posted by

I have literally just had the image of a women jumping out at me with her arms wide open with a crazy look in her eyes

The more a monkey climbs a tree ,the more it shows it’s arse 
Potter37
Posted by

I am sorry you have had so much crap Lass ,I will look at then grief thing, same age as me then so we are both very young

The more a monkey climbs a tree ,the more it shows it’s arse 
Lass
Posted by

And it raised a smile didn't it. So it worked! Lol

And that's the same diagnosis I had. So you've got papillary thyroid cancer with a follicular variant, which has broken out of the capsule and started trying to invade your blood stream. And if you anthropomorphise..... If that's not a word it is now.... the cancer cells, you could have all sorts of fun depending on your level of geekiness and fandom of choice. 

Deatheaters running out of the Forbidden Forest, trying to invade Hogwarts.

Stormtroopers escaping the Deathstar, trying to take Tatooine.

The Nazgûl leaving Minas Morgul and trying to enter Lothlorien.

The Daleks trying to invade Gallifrey. 

And so on. Makes it all seem a lot less worrisome as each of those was fought off and lost!

As for me, if you haven't then you can see my full story by clicking my name. 

Lass

Xx

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

Potter37
Posted by

Lol yes it did ,I have read your story Lass ,you are one brave woman it’s like a never ending story for you unfortunately Lass 

The more a monkey climbs a tree ,the more it shows it’s arse 
PhoenixRising
Posted by

Hi. its good to hear from you Carl. Sorry its all a bit of a crazy rollercoaster for you at the mo.

Lass haw written some brilliant things here as always. I just wanted to add, from my own experience...

Don't underestimate the effects of your body adjusting to the dose of thyroxine. . The initial dose they start you on will very probably need to be corrected up or down [usually up] so whilst that's happening you can feel very odd in your brain and body. Just wanted to reassure you that once you find your correct dose this should all sort out. but I remember feeling pretty awful in the first few weeks as I was adjusting. For me this manifested as  really bad depression [as my initial dose was far too low] and horrible joint aches and whooshing in the ears as well as awful exhaustion.

So just wanted you to know that if you do feel down, this can often be a side effect and will improve when the dose is right.

However, thankfully it sounds like they have started you on a much better dose than me [I was started on 75mcg which was FAAAR too low] I'm now on 125mcg now [im really tiny and its dependant on weight.] It sounds like your starting dose is a much more reasonable one.

It just takes a while and a bit of tweaking to find the correct dose for you but you will get there

And definitely make a comfy slope in your bed. I used a large Ikea cushion and that really helped me get better sleep. 

Sending you love and hugs

x

Thyroid cancer warrior

PhoenixRising
Posted by

PS. Whilst Im not one to advocate too many drugs, I found codeine was a lifesaver to get some sleep in the first few weeks. It took the edge off the pain in my neck enough for me to get a comfy position and its quite snooze inducing too. Dont think I would have slept if it wasn't for that. Im always worried about addiction but one low dose tablet was enough and it was fine. Was my doc who recommended it.

Thyroid cancer warrior

Potter37
Posted by

Thank you very much for taking the time to reply and for the info, hope you are having a good day 

The more a monkey climbs a tree ,the more it shows it’s arse 
PhoenixRising
Posted by

No problem . You take care of yourself xx

Thyroid cancer warrior