Failure of Parathyroids months after Total Thyroidectomy. .alphacacidol

[carroll998]

Hi need some advice please from someone whose had a Thyroidectomy and now has parathyroid issues months following op. Had my TT 9 months ago has a result had 1 parathyroid left it was 6 then increased to 26 now in last 2 months has decreased to 14. The problem I have is my stomach cannot tolerate 3000 calcichew a day tried sandacal that's worse. I asked my Endo yesterday because my pth on a downward slope if I could have alphacacidol then I could cut down the calcichew he reluctantly agreed because if I take them they will help me come of Cacichew but will most likely completely finish my parathyroid off ..what should I do and what r your experiences please...my body gets really tired am on Vitd3 and Magnesium but endo says to come off vit D cause dont need it on Alphacacidol. ..I'm confused ..😊

[taka]

Sorry I don't know much about parathyroid issues but Alfacalcidol is an active vitamin D3 metabolite so is presumably why you have been told to stop your normal Vit D (which is probably the cholecalciferol form of Vit D3).

en.wikipedia.org/wiki/Alfac...

en.wikipedia.org/wiki/Chole...

[debjs]

It took a year following my TT for my fluctuating calcium levels to be treated (I even had seizures but still they would not treat as my PTT levels seem to fluctuate). One consultant said that sometimes they don't fail altogether but tend to work inconsistently. I take 1 Addcal tablet twice daily and although it has added Vit D3 I also have to take extra Vit D which I find works better if I split it into 2 doses ie extra with each Addcal tablet. I need my Vit D levels to be above 90 to keep my calcium levels around 2.3 where I have many less symptoms - less cramps and muscle twitching. I was also told to ensure I eat calcium rich foods with each meal. I found the some of the hypoparathyroidism websites very helpful. I have read that Alphcalcidol keeps calcium levels more consistent than Vit D but think everyone just needs to work out where they feel best. I kept a diary of symptoms, doses and blood levels so I knew where I felt best. Hope you get it sorted.

[carroll998 in reply to debjs]

Are you not on Alphacal ?

[bantam12]

Your parathyroid may return to normal in time and people can usually manage with just one, even just part of one. I had parathyroid surgery and only have at most one left, I was hypo after surgery and given Sandacal and Alfacalcidol, I couldn't tolerate the huge doses of Sandacal. My para eventually kicked back in and is working fine now.

Have you looked on hypopara.org.uk they have lots of info and a forum so you will probably get more help on there.

[bantam12]

What is the range for your parathyroid results ?

[carroll998 in reply to bantam12]

Thankyou so much fot your reply it had helped me knowing that even tho you were on Alphacal your parathyroid kicked back in eventually my endo tried to discourage me saying that if I went on Alphacal I would stop my para kicking in but had enough of calcichew..are you also on vitd3?..I will check the ranges and get back to u ..once again thank u so much you've really helped 😊

[carroll998 in reply to bantam12]

14 - 60 +