Struggling with diagnosis

Hi Stephy19, I'm Tony one of the Community Champions, I had Head and Neck Cancer and half my Thyroid removed, I'm going through tests etc now even after 6 years as I am getting symptoms for it, perhaps the following information may help you

https://www.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/25049-10061/MAC1655_Thyroid_E12

Also a Charity called Swallows may also be a good link as you may have throat and other issues 

https://theswallows.org.uk/

Hopefully your clinicians will get it sorted I understand it takes a wheil for them to get the correct dosage

Take care, Tony

Hi Kasvin,

Thank you so much for this information. Everything has been so overwhelming, and I honestly didn’t even know where to begin looking for information. When you Google things, it just seems to open a can of worms and lead to even more worries and stress. I really appreciate you sharing this information with me. I hope your tests go well and that you get the answers you’re looking for.

Hi STEPHY19.

I am also thyroid cancer patient, my history started in 2022 with lump in my neck. No other symptoms, bloods always great. 

3 surgeries and now 33 sessions of external beam radiotherapy I still don't have the results if the treatment was successful. Will have that info in about 2 months time. 

I my case surgeries were not that harsh, maybe the first one was, but radiotherapy was something else. It made me very poorly.

As for bloods: it took long time for my ones to get to where they should be. Had loads of side effects when on high dose, decided to lower it a bit myself to prove to my nuclear oncologist that's what caused my anxiety and panic attacks. We came to an agreement the balance need to be restored and that's that.

Hairloss happened more due to the effects of surgery and general anastasia, few months after it settled down in my case. 

I would suggest thyroid cancer group on mcmillian for you. It will be more relevant with your history and there is a lady there who went through it all and have the answers. I thinks her name is Barbra. 

You can also reach to me, I will try to help anytime. 

Take care x

Hi Izzy,

Thank you for sharing your story, and hopefully the results are successful.

Yes, I have recovered really well from both surgeries and was back at work just two weeks later. It’s just been a lot to process, and sometimes I feel like I’m being overdramatic about some of the symptoms. I’m just trying to learn how to cope with everything. The tiredness has also been an absolute nightmare!

Hopefully, the hair loss is the same for me and is just down to the stress of everything that’s happening, especially while I’m waiting to find out whether I’ll need radioactive iodine as well.

Again, thank you so much for sharing the information. It’s been really helpful and reassuring.

best wishes x