Papillary Cancer

I’m so sorry to hear about your health issues but wanted to say that I totally understand where you are.  I had exactly the same findings and operations that you have had in the same order (but no radioactive iodine which still worries me as it’s never been clear why not!).  
I imagine that you have to take calcium supplements now daily too?  Can I ask if they have checked your pituitary gland function as part of this?  
my surgery was in July and September 2023 and I too remained exhausted.  It has improved a lot over time but it’s been very difficult to get my head around it and adjust.  However it does improve and things now are significantly better.  The parathyroid issue did have a Knock  on effect on my bone density so I had a DEXA scan which revealed osteopenia.  I would urge you to check this if you haven’t had this and which is important to be aware of.  I’m trying to improve bone density with exercise but I confess it’s a hard slog and it’s still very early days. 
I keep reminding myself that I’m super lucky to have had the treatment as  I’m in a far better place than I was.  I still can’t believe what’s happened to me but overtime the the emotions  settle down.  
The levothyroxine dose takes time to get right but no doubt you are being monitored to make sure things are right.

i was told that my levels need to remain on the low side to help stop recurrence of cancer and so I think it’s inevitable this causes knock on symptoms on thair, energy, body temp.
I take one day at a time now.  My neighbour has had  breast cancer and she is incredibly positive. She keeps telling me to forget yesterday and don’t let yesterday spoil today as it’s history. She also says don’t worry about tomorrow as it’s the future and you dont want it to spoil today.  It sounds so simple and I remember this every time I start to wobble .  
I wish you all the very best with your recovery and I would say rest when you need and don’t feel bad when you have to.  You have been through such a lot and your body is now in a different place.  You will adjust to your new normal and things will get better I sincerely hope xx 

Hi. Thank you for replying. Much appreciated. I haven't been offered a Dexa Scan. I was given two weeks of calcium to take and then they said I wouldn't need anymore as my remaining two parathyroid glands should do the job. I also haven't had my pituitary gland checked. I am seeing the Oncologist tomorrow so will mention this to them. They have said they will probably up my dosage of thyroxine. 

It is so nice to be able to hear there is light at the end of the tunnel as there are days when I do feel very sad but hopefully these will soon be gone. Your next door neighbour's quote is inspirational and I have written it down. Take care xx

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I’m glad it helped a little and hope all goes well with your oncologist.  I only had one parathyroid gland removed and whilst I still have 3 I think they remain on strike as my calcium levels still aren’t high enough !  

My pituitary was producing too much growth hormone and it was undiagnosed for about 30 years !  I just thought I was lazy and depressed due to my empty nest when our children went off into the world! Who knew!  I’m sure you won’t have this as things would shown up in bloods so I only mention as a passing precaution just in case.  

wishing you all the very best with everything  it’s a rotten thing to have happened but there is light at the end of the tunnel x

Thank you. I have just requested a blood test form to get vitamin and calcium checked as it has been a eight months since it was checked xx

Hi I had thyroidectomy July 2024 my calcium dropped 5 months after supplements stopped, I'm back on adcal d3 now. I've been referred to endocrinology but got to wait until December for appointment. My pth has not been tested since January. Gp requested it but lab would not test it so still not sure if damaged, calcium ok at moment but I m still getting twitching and knee cracks when bend. Just wondered if I should be waiting this long, also gp requested  to bone profile test with different results which one adjusted calcium low of 2.09mmol but no further action, I have told endocrinology about this but have not heard anything back yet.

I’m sorry to hear about your calcium issues and I can only assume t he lab test refusal might be a cost issue but I’m only guessing.  Maybe it can only be requested by an endocrinologist in which case my advice would be to go back to your gp and ask them to request it through your endocrine team.  December is a long time to be worrying so I would try this route rather than waiting.  Interestingly my parathyroid hormone  level is good but    my calcium remained borderline.  As I continued to have symptoms with cramping etc I was told to remain on the AdCal -D3.  I have tried stopping those from time to time but symptoms come back until I start them again!  I think the DEXA scan is important so I would def ask  about this in December as the hospital I go to ordered this as part of their protocol for my condition.  
II hope your gp can help you in the meantime as these things okay on our minds continually if not xx 

Hi thank you for reply I have got a medication review in 3 weeks so I will ask then. I'm OK just annoying get more achy and my job on feet and September is going to be busy as I work in  boarding school catering, serving, cleaning etc.. I guess see how I go then.

How many adcal do you take if you don't mind me asking

Originally 3 post op and then dropped to 2 and now I sometimes just take 1. Stupid I know to drop to 1 when They say I need 2 but I keep hoping my other parathyroid glands will buck up and produce the goods!! I just hate taking tablets and want to reduce them but the cramps come back so I’ve decided to follow the rules  and take 2 !  I’m hoping for a miracle at my review in September but I tend to think the glands will stay as they are! I’m forever hopeful the other glands get going so  I’ll see what happens then !  

I was on 4 after surgery then 3, then got stopped when pth at 2 which is just normal range then restarted them on 2 a day, I think maybe I need 3 again.