Low Calcium Post-TT

Hi Rosie.

My story with low calcium is long one but it shouldn't be. It seems my surgeon (who discharged me from his care in June) and my GP have different opinions of what is a good calcium level and what is not enough. 

3 out of 4 of my parathyroid glands were damaged at the surgery. I had to stay for 3 nights at the hospital due to my calcium being low. I've had tingling all over when low so I could clearly feel when I was low. They've done blood tests 12 hourly and on the last day my calcium was 1.93 (normal range 2.20+) and my surgeon said he is happy for me to go as clearly the last parathyroid gland is doing it's job just slowly. I was discharged with Alfacalcidol 1mg and Calvive 1000mg. I've had blood tests for calcium every 2 weeks. It was going up but slowly. Beginning of June I've had a phone call from surgeon and he discharged me from his care and told me I can stop the supplements altogether. 

In July I requested another blood test from my GP just to be on a safe side and my calcium was again below range (not a lot and asymptomatic) and my Vit D very low (that's nothing to do with TT - I've had problems with Vit D for years). So my GP told me to take Vit D and Calcium once again for 28 days. Bloods done again and both still below the range but only just.

In the meantime I've developed painful cramps in my calf. Went to pharmacy for advice and they said to take some magnesium supplement but the only one they've had was magnesium+Vit D+ Calcium. So once AGAIN I am on it. 

Just to mention: for months now I do not have tingling anywhere so maybe your calcium is much lower. Do you know your test results?

Sounds very similar… my surgeon wasn’t happy with the calcium levels post op, hence being kept in. The ward duty doctors weren’t too bothered as they said the PTH was “gradually increasing”. I have constant twitching in my toes, tingling in face/hands/feet and have also had crap in my calf and feet too… the last blood test I had was yesterday, and it was 2.08… theoretically it’s not “significantly” below, but I’m really finding things like walking barefoot hard as my feet just feel so numb and uncomfortable. It’s almost the “wait and see” mentality but it’s much easier said than done x

My bloods are similar to yours now but I don't have that symptoms anymore. It's different for everyone isn't it? I would maybe mention it to your team next time you see them. Maybe there is something else they can suggest for you to feel better and stop that tingling if calcium alone is not doing it. Take care xx

Sorry to hear you are suffering from the tingling sensation @Rosie_x it doesn't sound great at all. I had my TT and central and rh side neck dissection on the 26th July and also had low Calcium levels.  I was prescribed Alfacalcidol and Calvive but have since had to change from Calvive to Calcichew due to a manufacturing problem.  Haven't even managed to get the Calcichew yet as it took almost a week to get the prescription signed off at my doctors, after contacting the hospital, so have been taking Tesco Calcium tablets to get me through.  I haven't experienced the tingling sensation or muscle cramps fortunately, but was warned if I did I should go to A & E immediately.  I have also been ensuring my diet contains food/drink with good levels of Calcium.  I was in hospital for 5 days and I had a blood test 7 days after returning home.   I asked the nurse at the hypocalcaemia clinic when I was chasing up my Calvive tablets.  My level was within the range 2.20 - 2.50 (mine was 2.44) so I am assuming I am ok but have to have another blood test in 2 weeks due to change in Calcium tablets, which I will book when I finally get them, as otherwise the range could be all over the place with having to take Tesco Calcium and with my diet.  If you are still experiencing the tingling etc, I would contact the hospital and discuss with them what the best course of action is, bearing in mind I was told to go to A & E if I experienced that, I wouldn't risk not speaking to someone.  Meanwhile drink plenty of milk, eat things like sardines, dark leafy greens, oats, prunes, apricots, almonds, legumes, anything that will keep your Calcium levels up.  Also leave 4 hours between taking your Levothyroxine medication and taking your Calcium/Vit D tablets, and do not eat/drink for at least 30 mins after taking your Levothyroxine, plus stagger your Calcium and Vit D tablets throughout the day, rather than taking them together.  Hope you are ok, and let me know how you go on.