Thyroid UK
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Having a nightmare with Hypocalcemia! Desperate for some input!!!

Hello you wonderful people! I'm absolutely desperate for some advice! I had my full thyroidectomy 3 weeks ago tomorrow. Since that, I have had terrible trouble with calcium levels. I don't seem to be able to maintain them at all! I am prescribed Sandocal 1000 2 tablets twice daily (although I usually take around 8 a day). I'm taking 1mg vitamin D (Alphaone I think it's called) and 100mcg levothyroxine. I get tentany and end up in hospital requiring IV Calcium quite a lot. Endocrine say my calcium level must be at 2 before discharge but I've discovered from my GP that the highest I've been on discharge is 1.72!! So I was admitted to hospital Friday with a calcium level of 1.5 and after around 4 x 30 minute infusions I'd only gone to 1.7. The Dr on admission said he wants me at 2.4 before I leave and he wanted to check all of my hormone levels because he felt I was probably running on empty which was adding to the fact I'm not storing calcium. He said he felt I must be low of calcium every where and not just in my blood?! His decision to do this blood test and put me on a 20 hour infusion of calcium was made at around 8/9pm on Friday night. So the 20 hour infusion was started but no bloods. Saturday morning my results were only creeping up and I was still having symptoms, spasms in legs when sitting in certain positions, pins and needles in my face, hands, legs and feet, so a different Dr said he felt I would probably require another 20 hour infusion when the first was finished however it was a little early to say for sure. He said I did not require other hormone levels checking as we knew my calcium issues were because of the thyroidectomy. I wasn't overly happy about this decision however I listened to the consultant. After the infusion I was at 1.86 so the Drs that were on last night decided to stop my calcium! One Dr said I don't even understand how you do a 20 hour calcium infusion which in itself is a worry!! I expressed my concern in a firm manor that my levels have taken a long time to creep up and I do not want them dropping, I wanted to continue the next calcium infusion but no, nothing was done. The registrar on call said I'd had 11g of calcium and that was my limit?! Is this true?! I was left last night then wake up at 6 o'clock this morning with yet again curled up un-movable hands (tentany I think it's medically known as) horrible pins and needles again everywhere again and spasms in my legs. So the dr who decided to stop my calcium last night said 'oh dear, I didn't expect tear' and has put me on a 20 hour infusion!! Just as I requested last night! Every time I speak to someone it's a different story! I've got 5 children at home that need their mum to get home but need their mum to get home better so I'm not constantly being readmitted!! I just want to know if there are tests I should be pushing for? Or any other advice or information would be gratefully received!! Thank you in advance for your time!!

22 Replies
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There is a website for parathyroids -

parathyroid.com

Could there be some information there to help you ?

Hope you are soon on the mend.

Not a lot of info on the link - could be a start 😊

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Thanks so much, I will take a look now

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You are having a nightmare of a time and you'd think, being in hospital, they would be able to know how to get you well enough to be discharged.

Others who've had the same op as yourself will also respond when they read your post.

I am also sorry you are having severe pain and pins/needles.

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Exactly!!! You would hope so wouldn't you!! 😔!! It's not nice, if I knew there was a plan it would make it all the more bearable! Instead I feel like I'm being completely ignored today!

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In other words they've left you in limbo and worrying what on earth is going on with you and nobody appears to have re-asured you in any way. Its not good enough.

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Pretty much yes!! Great care isn't it!

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You have my sympathy and I think most of the members would agree they could have been kinder.

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Thank you.

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Poor you, I'm sorry you've having such a bad time. Have your doctors checked all your other vitamin levels too? Vit D, folate, B12 and ferritin? Have they considered that other deficiencies could be making your body less able to utilise the calcium? It would certainly not do any harm for them to check your other vitamin and mineral levels. If it were me, I would insist if they have not already checked them.

As Marz says there is a parathyroid organisation that can probably help a lot more than here.

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I know my vitamin D has been checked and has been fine however they have put me in a Vitamin D tablet to try and aid with absorption of the calcium. Not sure about others but not that I'm aware of! Sad thing is since 6 this morning when I did get cross that I was back to square one, I wasn't rude but I said I was very angry that I hadn't been listened to I must have upset then because I've not seen a Dr since! I know it's Sunday but they've seen everyone else! Feels like I'm being punished for being upset I'm back to square one! I genuinely wasn't rude! I will try the parathyroid website. Thank you for your help

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I looked at the parathyroid website but could only see info for hyperparathyroid which istn't what you need. I'm sorry you are now being ignored. If you have any further trouble, ask to speak to the director of nursing who is in charge of all the clinical staff. Do you know what your vitamin D blood test level was and what strength of vitamin D you are on now? The NHS often undertreats vitamin D deficiency. They will say levels are fine because you are just above range but that doesn't mean it's enough for your body to function well, it just means NHS have decided you won't get rickets. In your situation your vitamin D needs to be optimal, not just coasting along the bottom of the range.

NICE has clinical guidelines on its webite and there are CCG local area guidelines too. If you can get your blood test results for D post them here and then people can take a look and give suggestions.

I don't know why you had a thyroidectomy but if for thyroid cancer there is the Butterfly Thyroid Cancer organisation and website you could go through too.

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If you scroll down and down in the link you can click Hypoparathyroidism to read more 😊

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Go to hypopara.org.UK - a specialist organisation for parathyroid problems. They have a Facebook page too, which generally gets you a faster response than their forums. x

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If all your parathyroids were removed along with your thyroid ( careless surgeon) then you will always need to take calcium. If you have parathyroids left ( you can manage with just one remaining) then they may just be taking a while to get back to normal. You do need a parathyroid test done.

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Well my surgeon left half way through my surgery!! I was actually under for 5 hours for a 2 hour operation! I've had no explanation as to why he left, he's made no contact at all!! No one knows if my parathyroids are damaged, been removed or just in shock and struggling to cope!! I thought surely you'd know if you've removed them or not, I don't know.

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Pathology should have noticed on post op exam of the thyroid, parathyroids are very tiny and their location can vary in some people but even if one, two or three were accidentally removed the remaining one can do the job.

I had parathyroidectomy and my calcium level hit the floor afterwards, I was on calcium for a while but my one remaining parathyroid started to work again after a few weeks.

You need your parathyroid level tested and you need an explanation as to what is going on, as I said if you have any parathyroid tissue left then hopefully it will function again given time but if not then I'm afraid maintaining calcium levels can be difficult.

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I didn't even know pathology would examine the thyroid. Who would have this information?? Presumably my elusive vanishing surgeon?? I'll try and track this information down tomorrow. I'm just hoping tomorrow when I see an endocrine Dr these questions will be answered! Although I'm cross a Dr hasn't even come to check on me today I'm please I'm not hearing yet another opinion or plan change. I will let you know what's said tomorrow! Thanks for all your input everyone, it's all greatly appreciated

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Ask for a copy of the pathology report but it might not reveal how many parathyroids were removed, it will probs just report on the finding of parathyroid tissue, however, it should be possible to get the notes of the 2 surgeons who undertook the surgery and hopefully the notes will reveal whether they were able to identify and protect the parathyroid glands or not.

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Low magnesium and low potassium can cause spasm, cramp, twitching and fasciculations as well. Low iron and ferritin doesn't help either.

I'm sure the main problem is your calcium and vitamin D, but there may be other things you can do that help :

msdmanuals.com/en-gb/home/h...

The above link mentions low magnesium.

Note that testing magnesium levels is pointless. The body will move magnesium into the blood from the cells of the body if the level in the blood falls. So your body's cells could be very deficient and yet the blood test will look fine. Magnesium deficiency is very, very common.

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Funnily enough I read about magnesium being low being a factor for those who can't upkeep their calcium and I mentioned this to the nursing staff who have checked my levels and I'm just below the normal range so that may be contributing!! I'm hoping when I see endocrine tomorrow they will be more thorough

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Lots of us on here treat ourselves with magnesium. There are lots of different ways of supplementing it, some good, some a complete waste of money.

naturalnews.com/046401_magn...

metabolics.com/blog/the-def...

globalhealingcenter.com/nat...

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I had to eat tums or rolaids like candy. May help.

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