Hypocalcaemia to Hypercalcaemic

[BlairBear]

Hi, I recently had a total thyroidectomy on 03.01.18. The operation went pretty great and the surgery site has now completely sealed.

Unfortunately following my operation the nurse did not provide me with any calcium supplements or vitamin D when dispensing my medication on the ward as she had not read the chart properly. This allowed my calcium levels to drop to 1.58 and unfortunately I did not immediately respond to treatment and spent 10 days in hospital having multiple infusions to slowly bring me back up to a safe level. Any time they stopped the infusions I would immediately drop to dangerously low levels. I was eventually discharged on 4.5 micrograms of Vitamin D a day and 4 x 1000 calcium tablets a day. I had a blood test yesterday at my local GP surgery and was later telephoned and asked to immediately stop taking it cold turkey as my calcium level had come back as 3.38.

I have followed their instructions and attempted to contact my ENT surgeon to confirm this as a correct course of action but have been unable to reach them.

I am now starting to feel small symptoms such as tingles in my feet and my hands are feeling slightly stiff. I don’t know if I should head to the hospital as I have been told if I feel any symptoms at all there is safety netting in place to have me assessed immediately as soon as I walk through the door due to how gravely ill I became previously or if it is perhaps just a reaction to going cold turkey.

Has anybody else had experience with this or know what is for the best? I don’t want to waste the hospitals time but I’m also fearful of dropping so low again.

Thanks in advance for any help you can give

[Dinkers]

Hi as you were so poorly after your operation I would definitely contact the hospital ward you were on for advice asap hope all is better soon x

[bantam12]

Rather than stop dead perhaps lowering the calcium dose would be better, at least until you can contact your Endo, 3.38 is to high so you need to do something.

I had parathyroid surgery a few years ago and initially my calcium was seriously low but then on high dose of calcium and VitD it soon returned to high/normal, I reduced my dose before stopping.

If you have symptoms then safest to get checked.

[Nanaedake]

Definitely contact your hospital consultant immediately. You should have a telephone number for the secretary. GP's are not trained to care for thyroid patients who have had a thyroidectomy and my experience after a decade is that they don't really know what they are doing as far as calcium and levothyroxine is concerned. If you feel unwell then go to A&E, low calcium is serious.

What was your reason for thyroidectomy? You might consider transferring your care to a more specialist centre than a general ENT department as it doesn't sound like you are getting good follow-up care and the ward staff were not properly trained in care of thyroid patients. Your GP should be contacted the specialist for advice about your longer term care. If they cannot do this then there is a problem of communication.

[Cashew64]

Hi,

I had my thyroidectomy 26 yrs ago in January and similar to you, within a day or two I went into "full tetany" twice needing IV calcium over a day 10 period once the surgeon realise my parathyroid glands had also been removed. I left hospital with One-Alpha Vit D (the most basic form of Vit D that's absorbed differently to regular supplements so it protects the kidneys!) and 1000mg dissolvable Calcium tablets to take daily...over a period of weeks I was able to stop the calcium tablets but had them as a safety net to take "ad hoc" when I felt tingles , my hands stiffened and classically curled inwards to take one immediately with instruction to seek help if symptoms did not subside. (This only happens now if I hyper-ventilate and I keep Tums indigestion tablets in the house now just in case!) Ensuring lots of leafy green veg (for a balance of nutrients such as magnesium, potassium, and B group vitamins which help regulate calcium levels in blood) plus calcium too (milk, yoghurt etc) in my diet has fortunately helped keep my calcium on a relatively even keel. One-Alpha dose has remained constant on 175 micrograms.

As your calcium is clearly too high, then you do need to reduce the calcium tablets as advised. The most important thing is to listen to your body...cold turkey might sound harsh but if you're getting sufficient in your diet then you'll be fine...your body will level itself out. (Too much can be equally damaging to organs, as too little can for bones!)

However, If you are at all worried that the "tetany" symptoms are returning, (an indication of calcium being too low) then get some calcium into your body fast...always make a diary note of the event, what you have taken and when, if it worked etc. If symptoms persist and do not ease quickly (within an hour) or they get worse, then you must get medical help. GP/111 or A&E/ 999 - depending on severity and time of day/night etc

Hope you feel better soon.

[Hidden]

I had hypocalcemia too after a total thyroidectomy last May, I was on vitamin D and a lot of calcium. I was told you couldn't just stop taking it and that you have to be weaned off it slowly, I was slowly reduced over the months and now don't need it.

[BlairBear]

Hi everyone, many thanks for your replies I went to the hospital as you advised and was right to do so, I became very unwell again and had to be built back up again via IV. I am now back on the oral supplements. Every doctor who I spoke to raised their eyebrows in surprise when I told them my GP surgery told me to go cold turkey. I am now being closely monitored as an outpatient with blood tests every two days. I’m still hopeful the hypocalcemia is temporary 🤞🏻

Thank you for all your help xxx