Recovery and getting used to Thyroxine

Hi I had a thyroidectomy last Wednesday for papillary carcinoma  thyroid  cancer. All went well had to stay in hospital for 2 nights because of drain. I feel tied sometimes  I guess body got to adjust to having no thyroid. I'm on 100mg levothyroxine. Not sure yet weather I've got to have the treatment. Find out in the next few weeks. Also on calcium supplements.

Also I've been eating more too.

Hey, I have Follicular Variant of Papillary cancer, I had a TT in September, RIA on Feb 14th, was out straight on 150mg Levothyroxine and was increased to 175 and further wanted to increase again but due to side affects kept it at 175, now because of my bloods I'm on 150/175 alternating days.

I have weight gain and even with a diet seems to just not lose, palpitations, fatigue, diarrhoea, headaches, insomnia at times. 

So far I haven't found things that help especially with the weight gain but I am just about to get help with a wellbeing for life program to see if they can assist. 

I am still working so it's not just I'm not doing things and I don't eat loads anyway well except some weekends haha! 

Advice is to keep active even if not losing, think the dose of Levothyroxine is my trigger but they can't start decreasing till December to keep my tsh low.

Think we should try and not let it get to us as what we going through is enough already but we just can't help it can we especially when our clothes don't fit!

If you find anything that helps please let me know

Hi did you have any side effects from radioactive iodine. I'm waiting for results from thyroidectomy and checkup but I have been told I will most likely need it. How long did you stay in hospital.

Hey Miss Mole,

I had no side effects from my RIA, well I didn't notice any. My consultant wrote on my notes that I denied any side effects but if I had any they were mixed with all the ones I had already.

I was in the isolation for only one night, got out late afternoon with restrictions in place, sleeping alone, staying away from people, so I just stayed in my daughter's room for 3 days. 

Thats good to know. Can you use public transport when your let out or do you have to get someone to pick you up.

The test your levels before they let you go so your safe enough as long as not in close contact so should be ok I think but if they were worried about that then they would keep you longer 

Hi, sorry for late reply,

I had RAI treatment for Hurtle Cell Thyroid cancer in June.

I appear to have been unlucky as I felt I’ll with headache and nausea from the two injections prior to going into hospital and felt very tired and nauseous the whole time I was in hospital after the RAI treatment. I was given medication but I lost my sense of taste and had a dry mouth. I followed all the advice given to me. I had to stay in 6 nights and had x3 days away from family and then avoiding children and pregnant women for about 3 weeks.

I expected to be back at work but still feel very tired and taste comes and goes. My neck aches more than after the surgery on some days. The brain fog is worse than when I had my completion op and started on Levothyroxine 125mg
I posted as I felt awful and had trouble contacting the nurse specialist.
it really is very individual re treatment and side effects.

My nurse specialist did reassure me that it is within normal.

I am due to see the oncologist in about a month and having some blood tests prior to that so they can be discussed at the appointment.

I am having counselling with a local cancer charity which is helping and I accessed counselling through this website before my RAI as I was very anxious about it.

I am slowly improving which is positive but I didn’t expect the side effects. I am a nurse and really followed the advice given. I went prepared to stay a week and unfortunately I did !

The staff were amazing looking after me and called me regularly. 

I really hope your experience is better than mine re side effects. I’m not sure what dose I had - there are 3 different ones at my cancer centre. 
Ask lots of questions re the treatment. 

I only look on here and discuss with the nurse specialist/ oncologist re treatment as there is limited information out there. I didn’t have a nurse specialist prior to surgery or in between surgeries and I felt that I didn’t have as much information as I should have. I think with hindsight I was too afraid to ask the big questions. I went on my own to everything as my husband has health issues and my children are only just adults. 
Take someone with you to the oncology appoint and ask loads of questions. 
Happy to help in any way.

positively most people seem to have an ok experience with RAI so don’t think you will stay in like me!

I’m sorry to hear everything but I totally understand.  I had my thyroid removed in 2 stages too and had papillary with a follicular variant.  I had the second surgery last September and I am just beginning to feel better recently.  Weight remains a struggle but since really reducing carbohydrate (esp bread/pasta) my appetite is a lot better and my weight is no longer increasing.  My hair has been badly impacted and I look like a scarecrow as lots fell out and it’s now brittle and very dry!

I take 100ng and 125mg on alternate days but it’s due for review I think!  The issue I have is that after surgery I found out by accident from a boots pharmacist that I should leave a min 3 and pref 4 hours before having any calcium! This is apparently due to the fact that the calcium prevents absorption of the thyroid meds!  I’m still not clear as 3 different pharmacies  have told me different things and an endocrinologist said I only needed to wait for 30 minutes.  However since waiting 4 hours I feel my well being has improved although so have no idea if it’s related!  Were you told this? 

it does get better over time but I think I’m still in shock. It’s still very early days for you but I hope that as your body gets used to the massive change, you will begin to feel brighter.  

I too have calcium supplements as I also had a parathyroid gland removed.  It’s difficult to wait four hours for the calcium supplants do I now set by alarm for 5 am as I’m ready for coffee by nine!!

if anybody knows the answer to the calcium question re the 3:4 hours I would be very grateful

I feel very similar to you but just wondering if you were  you told to avoid any  calcium fit 4 hours after taking levothyroxine as it hampers its absorption ?  
my weight is a struggle but I’ve recently reduced all carbohydrate and it’s having a positive impact on my weight and hunger!  

if anyone has any tips on tami g totally mad hair I would be so grateful !