Hypothyroid from Immunotherapy

Hi Squeak 

I'm sorry to read about the side effects your husband is suffering with after having immunotherapy. Has he notified the hospital team that administers his immunotherapy? 

I don't have any personal experience but have done a search in the group and saw that SHELLY30 posted about being hypothyroid 6 months ago. Having tagged them into my reply to you, hopefully they'll pop on and share their experiences.

Thanks latchbrook. He's spoken to the GP today but there doesn't seem to be any urgency to following anything up at the moment.

I wanted him to ring the emergency number last week but he was reluctant as it would have probably meant hours in A&E for very little gain and we were so tired.

The GP seemed happy he has blood tests again next Monday and a phone appointment with the oncologist the next day.

Thanks for tagging shelly30. It's good to hear other's experiances.

Being on immunotherapy myself I would advise rest alot more to let your immune system work to the level it needs to. I get that working can be a good distraction from the cancer but a balance must be found.

Hi Squeak

Since Feb last year I have now had 13 x Nivo infusions 28 days apart following 2 x Nivo & Ippy in Oct/Nov 2023.

I developed Hypothyroidism in July (my TSH was slightly raised) and was put on 50mcg of levothyroxine daily. It is something my team were monitoring so I guess this is not an uncommon side effect?

Since taking the levothyroxine my TSH and Free T4 have been more or less in the middle of the 'normal' range.

I walk a fair bit and play golf 2 or 3 times a week. I feel less tired now than a few months ago. 

Not sure what will happen when I finish my 2 year course of Nivo in September but dealing with the hypothyroidism for me has been a small price to pay for the way the Nivo has cleared the aggressive brain metasteses! 

I guess we are all on a journey with this disease and the various treatments...

I hope your husband will react well to and tolerate his ongoing treatment. 

Best wishes

C

Thank you Cheeseboard. It is inspiring to hear your progress.

Yes indeed it's a small price to pay. There was something going on with his clotting last month aswell. He had a small wound on his arm that took 2 1/2 days to start clotting. Bloods last week were ok though.

Being actice is very important to him, so I feel ambivilant about him continuing to do vigorous exercise and keeping his life as normal as possible.


Thank you so much for sharing.

S

This is what I have been saying to him and understand his need to keep life as normal as possible. I have passed on your advice.

Thank you Paul
S