Papillary thyroid carcinoma

First of all welcome I'm sorry you've found yourself here!

I have Follicular Variant of Papillary thyroid cancer, I have had RIA also in 14th February, I had a full Thyroidectomy in September which was also to confirm diagnosis.

I am having loads of side affects of the Levothyroxine as they have it high to suppress my tsh to 0.01 but I'm struggling also, my bloods are all abnormal, he just altered my meds because GP sent message asking for advice and I will see him in September. But I keep thinking my tsh T3 and T4 have both increased I'm thinking the worst!

I think his is our daily battle with this is managing symptoms/side effects and the mental battle of trying to accept this has happened and try our best to stop asking ourselves why us? But it's nothing you did, you didn't deserve it, it shouldn't have happened to you but we here are all finding ourselves here trying to find the same answers you seek.

We are all here to chat anytime and try answer your questions or just offer you a big hug as we all understand your pain xxx

Thank you so much for your reply even I have the same variant of thyroid cancer. I’m on 175mcg how much dosage are you on? My dr just altered my dose too by alternating between 150mcg on sat and Sun and 175mcg on other days. But I’m losing my mind thinking that something is wrong that’s why they have altered the dose. 

So if my TSH is low below 0.01 but only T4 is high do you think I should be worried?? Pls can you let me know if you know anything about this?

Same as you, I was on 175mg a day but he just changed to 175 mg and 150 mg alternate days as my bloods were 6.4 for my T3 and T4 was 28.2. 

I have heart palpitations, weight gain, headaches and recently don't know why but when work a bit more I'm getting stupid swollen feet, ankles and legs grrr.

The T4 being high indicates your getting too much Levothyroxine but you may be like me and need that which is why he has altered your medication to probably stabilise it.

They check for tumor markers when they do the blood tests called  thyroglobulin and the thyroglobulin antibody tests, if that increases then there is likely a regrowth but they will do that at your checks and then they will do a dynamic risk stratification which looks at that data so see if they believe it will reoccur.

Hope that helps x

Hi Learningtobepositive,

sorry to hear your story, you are so young. River71 has given you some great advice but I thought I'd add my reply in case it helps.

I have a different variant too, Medullary, which is tackled and monitored differently but I just wanted to add that I struggled mentally with it all too, you're not alone and I was mis-diagnosed for years too. One year on with some post op complications, I still get some days when I just cry but I feel I'm mostly slowly adapting and adjusting to my different life now. It's getting to that acceptance that's the key I think. When I get bad days I try and focus on the fact I'm stilll here for my daughter and just try and get through the day but I know it's not easy and what might be the right way for one person might not work for the next.

Also as River71 says the Levothyroxine for some of us can be a bit of a trial and error to get the correct dose. That of course can cause it's own low mood and anxiety before they get the dose right.

Macmillan do provide 6 free counselling sessions if you feel that would help you process it all. Also if you have a Maggie's centre near you, I went once and found it helpful just to talk to someone who wasn't close to me. As for your bloods monitoring questions, I found my Clinical Nurse Specialist an absolute Godsend and she replied to my emails really quickly and answered any questions. Perhaps you could try those options too?

There are a few younger members on here I think with yur variant, that might be able to connect with you, I'll tag them but I don't know how active they are on the forum. CH9  CL25  Snowyseal Hope you get some more answers soon x

Hi there,

i just wanted to reply as I’m a similar age at 24 and also struggling to get to grips with having/had cancer at a young age. So many questions, why me? Such a drastic thing happening can have a massive impact on your mental wellbeing, I’d really suggest reaching out to any family or friends that may be able to support you, or any mental health services available. It’s a huge thing to happen so please don’t try to deal with it all on your own, especially as you try to get back to “normal life”. What is normal anymore? I still feel so wounded even though I got the “all clear” in March. My emotions are so up and down now, angry, sad, so tired, mixed with days I feel ok. Please message me if you would like, we could support each other through this :) 

Hey lovely, 

I feel exactly the same as you like my former life has been stolen from me. It is really hard to understand and live with the fact there has been a big change in life that things will never seem the same as they once were.

I am 25 and have papillary thyroid cancer, I had a total thyroidectomy and right side neck dissection due to cancer spreading to my lymph nodes. I had my RAI less than a month ago and due to the struggles of limited nhs staff etc I won’t get my results until September️ 

I completely understand how you’re feeling. It is so challenging to understand that this is happening to us, especially with it being one of the more rarer cancers it feels very isolating at times. I’ve yet to encounter another person with the same cancer as me, it is rare as a whole but even more so in my area, or so it seems. This can make it feel even more challenging but this online form is always here, you have many people on here who are feeling the exact same way as you so make sure to reach out on here. I have a Macmillian buddy which is a great help, they don’t have cancer but they are very understanding, you can set that up by contacting Macmillian. Now and again I go to a cancer support group for young women which is set up by the maggies centre, if you have one close to you I’d see what they’ve got on. 

You are not alone in this and you will get through this challenging time. Sending you a big hug xx