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Calcium level ??????

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Calcium level ??????

Post by Hadleigh on Tue Oct 07, 2014 7:35 pm

Does anyone know what calcium level we should aim for post op ?

Mine was 2.1 something on Friday, yesterday result 2.52, GP thinks its ok but I feel it might be a bit high, I have already cut down to 2000mg of calcium a day and think I will go down to 1000. Any thoughts people ?

My pth has gone down from 0.9 to 0.6 which is a problem as I am not tolerating the Alfacalidol and presumably i am not absorbing the calcium hence the high-ish result.

Again any words of wisdom appreciated. Have to say right now give me hpth any day, the other side is not going well.

Nelly
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Re: Calcium level ??????

Post by Linny on Tue Oct 07, 2014 7:48 pm

Hi Nelly

So sorry for you, the surgery didn't give me a miraculous recovery either. I think it takes a while for everything to settle down. My hormones and all sorts went all over the place.  Just letting you know my levels were 2.1 after op then, 2.18. 2.1 2.25 2.34 on last test in August. I am as I said convinced it only came up after magnesium. I am due a test at end of this month so we shall see. 2.5 isn't high and when I was taken to A&E back in June mine was 2.45 as I had been taking calcium thinking that was the problem. They called me back three days later and told me not to take calcium and it dropped back to 2.2. So it probably is calcium. I only have one parathyroid gland ( I think) now and PTH levels are hovering around 4.8.
Hope that gives you a bit of an idea. 
Love Lynn xx

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Re: Calcium level ??????

Post by Hadleigh on Tue Oct 07, 2014 8:10 pm

Thanks Lynn. Where you taking a Vitd analogue after your op ? Or did your pth not go to low?

I would rather keep my calcium lower end so will drop the dose of calcium, presume if the pth is very low the feedback loop is broken so absorption is affected and i risk further kidney stones amongst other things.

Of course i may be talking twaddle Rolling Eyes

Nelly
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Re: Calcium level ??????

Post by pilipala on Tue Oct 07, 2014 8:21 pm

Hi Nelly,

I don't think you're talking twaddle. You make way more sense than any doctor I've seen so far!

So sorry things are rough. Those are MASSIVE swings in your calcium level so I'm not surprised you feel terrible. I agree that 2.52 is high  and if it were me I would be cutting back on the Ca tablets and seeing whether I felt better for it. Lower Ca would hopefully encourage your PTH to come up a bit.

As Linny says you need magnesium to make PTH so that's another thing to investigate.

Really hope things settle down and you see some improvement.

Love and hugs,

Dee
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Re: Calcium level ??????

Post by Linny on Tue Oct 07, 2014 8:32 pm

Hi
My PTH 2 weeks post op was 4.6. Mr Palazzo did not put me on vitamin d after surgery. The endo gave me a very high dose in March which is what caused my probs. As I understand it now we need vitamin D to bring calcium up but if you are magnesium deficient it will make you worse. They don't seem to consider magnesium and the test is useless. We need RBC mag test not serum. Google vitamin d magnesium and loads of info. You sound like you have a good doc so he might know about magnesium but most don't seem to or think its irrelevant. We are probably all magnesium deficient after this disease. I had all the symptoms before but didn't realise it. I thought it was all down to calcium. It was only when Vit D sent me doolally that I got it. I'm still doolally by the way!!
Maybe ring your guy and see what he says. I know this, I will never take synthetic vitamin D again, it's a good excuse to get to the sun now and again. Of course, we are all different and it really didn't agree with me. As it turned out I didn't need it either. After surgery my D was 37 but I went to my friend in France for four days in Alps in March and when I got back it had shot up to 90! I obviously don't have a problem getting levels up. I wonder if with PTH our bodies keep D low to protect us? Hope I have helped a bit. Sorry about mini rant but we are left without enough support post op
Lynn x

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Re: Calcium level ??????

Post by Hadleigh on Tue Oct 07, 2014 9:09 pm

Thank you Dee and Lynn for your input, helps to have more brain power on the job Smile

I'm sure i read somewhere that after surgery calcium is best kept in the lower half of the range, of course i can't find it now !

Will cut my calcium down and try taking the vitd at a different time of day, if that fails then will attempt to call surgeons sec and hope he is around to help.

This op recovery is definitely not as easy we are led to believe Rolling Eyes

Nelly
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Re: Calcium level ??????

Post by Jasmine2 on Tue Oct 07, 2014 9:28 pm

I seem to recall reading that a calcium of around 2.3 is considered the perfect number but I can't remember where I read it - doh!

Lynn, so good to see you and your wisdom back here again after the trauma of the past few months. We've missed you...... glad to hear that you are getting things sorted and sloooooowly improving. It's a bugger though that we have to do it all for ourselves Rolling Eyes 

I'm not pursuing the magnesium thing until I've got everything sorted between FP and Miles Levy. Too much going on at the mo - just not moving quickly enough! 

J x
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Re: Calcium level ??????

Post by Hadleigh on Tue Oct 07, 2014 9:37 pm

Probably the same missing article i read it on jasmine Very Happy
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Re: Calcium level ??????

Post by Little Audrey on Thu Oct 09, 2014 1:33 pm

Nelly, my first post-op calcium was 10.2 (2.55 in UK numbers). It was exactly the same as immediately before my surgery. The difference was that the PTH before surgery with that level was 62.5 (6.6 UK numbers), and after surgery my PTH was 26.8 (2.1 UK numbers). I too took calcium supplements immediately following surgery, as we expected my calcium to plummet after surgery. As you can see, it did not drop at all at first. When I learned my calcium was still 10.2, I stopped all calcium supplements. My latest calcium and PTH levels, checked about a month or so ago, revealed a calcium of 9.7 (2.4 UK), and my PTH was 39 (4.1 UK). I hope I have calculated all of these numbers correctly. : )

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Re: Calcium level ??????

Post by Hadleigh on Thu Oct 09, 2014 1:46 pm

Hi Audrey

My calcium the week before surgery was 2.75 and immediately after surgery 2.16, now with the supplements it is 2.52 which is too high i think. I haven't taken any today as they are causing me stomach problems.

Pth pre op was 8.1 now 0.6 which is to low, Im on a Vitd analogue but I don't do well with Vitd supplements either so if as my surgeon thinks i have no parathyroids left it is going to be a problem.

I would still rather be hyperp than on this side Neutral 

I have an appt with the surgeon next Weds and blood test 2 days before so will see what next week brings.

Nelly
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Re: Calcium level ??????

Post by Little Audrey on Thu Oct 09, 2014 1:57 pm

Nelly, if you stop taking the calcium supplements, your calcium will drop a bit, and your PTH will come up. I would think that is what you need to do at this point. Yes, 0.6 is VERY low for PTH!

I'm happy you have an appointment coming up soon, but, in my opinion, it's not soon enough! I hate when we have to wait when we are feeling so terrible! I wish they could see you sooner!

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Re: Calcium level ??????

Post by Hadleigh on Thu Oct 09, 2014 2:30 pm

I do actually feel a bit better today, just been out in the garden picking apples Smile 

I think next Weds is ok for my appt as I will have another blood result by then so will give him an idea of where things are going.

On the up side my neck is healing well although still quite swollen and puffy, voice is not so good at times which others may find a blessing Very Happy

Nelly
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Re: Calcium level ??????

Post by Little Audrey on Thu Oct 09, 2014 3:00 pm

GREAT news, Nelly!!!!! Hope everything continues to improve for you!!

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Re: Calcium level ??????

Post by mealinacup1 on Thu Oct 09, 2014 3:09 pm

Hi Nelly,

I am glad that you have had a better day and i wish you all the best for your next appointment. i didn't realise how awful you can feel after that pesky Parathyroid is removed, i suppose every one's different, but the human body is a marvelous thing and it will probably take time to readjust now that the offending Parathyroid is gone!

It must be a relief that its finally happened!!!

Today my brain is mush, seriously mush, i now have headaches and nausea to add to the mix, but hearing your progress really gives me hope.

Take Care

Diana x

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