low Calcium levels post surgery

Hi Iza_bela

Just 'bumping' your post back to the top of the discussion list as I noticed you hadn't had any replies yet.

I hope your team manage to get on top of this problem.

x

It does sound like you had a pretty extreme reaction to your surgery.  It's not common - but neither is it rare - that people do have problems with parathyroid damage but I haven't heard about such an extreme reaction as you describe.

I don't have any personal experience. I know my surgeon saved me one and it jumped to attention and has worked like a trooper ever since. 

Most people I know who have had damage have been told that if certain things happen, to call the hospital.  It sounds like you've been following that advice and getting calcium drips. 

The only hope I can give is that over time, it usually gets better and sometimes if there's a sad little parathyroid still in there, sitting around feeling bruised and battered, it might kick into action again once it's over the trauma. We've got to hope that the surgeon saved you something in the way of parathyroids because life without any is very challenging.

End of March sounds like a long time to wait and I'm far from sure that endocrinology are going to sort that for you unless you find somebody who really knows their stuff. I'd be inclined to kick up a bit of a stink sooner than that and see if you can get some attention a bit sooner. 

Thank you Barbara I always love reading your wise advice on here and find it ver informative and reassuring xx I hope you are well !!

Im literally replying from a&e bed right now as I ended up having those symptoms again and my calcium dropped to 2.0 it was 1.65 when I had the spasm and even the doctors were shocked how low it dropped ..

I got some attention from endocrinologist today but he just said they monitor it .. not really promising, who do u mean when u say someone clued up ? I definitely want to reach out to someone that can investigate this issue properly and not just react to it when it drops 

I am really hoping that my lovely parathyroid will be kind enough to come back to work at some point, enough of sick leave haha 

thank u so much again xx

Oh you poor love. What a rotten time you're having.

I honestly don't know WHO should know what to do about this. I think parathyroids probably fit into endocrinology as they are hormone related but maybe a head and neck specialist would be knowledgeable not necessarily a thyroid surgeon. I'm really not sure. My thyroid surgeon was a bit of a neck-of-all-trades and was quite adept at reducing Adams Apples lady patients who used to be gentlemen patients as well as sorting out thyroid and paras. 

That said, you are probably in the best place possible to ask the questions about WHO medically-speaking would be the best person to sort you out rather than just patch you up. 

I think your case is special. I would try to push for a referral to a parathyroid/calcium specialist if such a person exists.

For all things complicated, I always point people to Kate Farnell at the Butterfly Thyroid Trust. She seems to know all the top people in the field and she's very approachable.

Get well soon.

thank you, it doesnt seem like anyone has had the same issue haha im just unique 

I will still post an update once I get any new information just in case somebody in the future may have a similar situation:)

I'm going to say NOT UNIQUE but certainly VERY SPECIAL.

Hi,

I was like you, I had my TT and bilateral neck dissection and when I woke up, I was plastered to the bed and had all the symptoms and was taken straight to hdu for a calcium infusion. This went on for 10 days and thankfully I’ve been okay in regards to my calcium levels but I’m not holding my breath. Maybe a calcium infusion might be something worth asking about? I had two and honestly (touch wood) have had no issues coming out of hospital. I’m also on calcium tablets and alficalcidol. 
Sorry I can’t be as much help and hope you get some help!! 

Hi Iza_bela

Sorry to hear this.  My calcium levels were very low following TT, bilateral neck dissection and removal of lymph nodes. Unfortunately, all four of my parathyroid glands were removed and I now have Hypocalcemia as a result. This has caused paresthesia (tingling in my hands, feet and around my lips). I have ME so this has exacerbated my chronic fatigue symptoms too. However, I have been prescribed Adcal-D3 (1500mg) and Alfacalcidol (2.25mg) and this has brought my calcium levels into the lower end of the normal range. I will be on calcium meds for life but I feel reassured that I will receive regular blood tests which will enable my consultant to make any necessary tweaks to my meds which should help me to manage the side effects better. 

Take care xxx

Hi Iza-bela

This is the first time I have posted on here but felt compelled to after reading your message.I had half of my thyroid removed in January and after finding cancer, had the rest removed a week ago. 
My last operation was very different post surgery than the first. Expecting to stay one night, I ended up staying four nights due to low calcium levels. Like you I had extreme tingling in my hand, arms, feet and legs as well as lips and occasionally face. I also had a racing heart on occasions. 

I am now home with calcium tablets twice daily and also alfacalcidol too (as well as levothyroxine). 
I am having my bloods taken again tomorrow and then waiting to see my consultant within the next couple of weeks. 
Although I was desperate to get home I also felt really anxious as the ti fling hasn’t stopped still now. 

I saw my GP this morning as my wound is weeping a bit so have antibiotics now for that. I feel a bit better after talking  to her but it’s a strange feeling when you don’t know anyone else who is or has gone through it. 
It was so interesting to read about your experience too as it’s so similar. I hope you are feeling a bit better now. 
best wishes