Anyone using Alfacalcidol for vit d deficiency ... - Thyroid UK

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Anyone using Alfacalcidol for vit d deficiency , what dose ?

Avalynd65 profile image
14 Replies

Just wondering if alfacalcidol is used much , I don't hear anyone else talk about it . My Doc gave it to me a year ago but it did not increase my levels but did help with joint pain . The dose was 1microgram .

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Avalynd65 profile image
Avalynd65
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Clutter profile image
Clutter

I was prescribed Synergy Biologics ProD3 2000iu as a maintenance dose following loading dose of 40,000iu x 7 days. Lifted <10 to 116 in 2 months.

This link may help imperialendo.com/for-doctor...

bantam12 profile image
bantam12

It's normally prescribed for people with kidney problems as it acts differently to normal vit d.

My GP recently prescribed it for me but my endo said not to take it as it would raise my calcium level and I already have hypercalcemia. My husband takes Alpha as he has kidney failure. Fultium is the usual supplement given or another one is PRO D3.

Parbrook profile image
Parbrook

I take a 0.25mcg capsule (One-Alpha) daily as I have CKD.

Alfacalcidol bypasses the normal processing of Vit D in the kidneys, which is why it is used for people with CKD.

netdoctor.co.uk/liver-and-k...

I seem to remember my renal consultant telling me that there is no need for a Vit D blood test when taking Alfacalcidol, because it is not actually Vit D, but something that has a similar effect.

Avalynd65 profile image
Avalynd65

Thanks for the replies , isn't it strange tbe way different doctors recommend different things , I wondered why the GP gave me alfacalcidol (one alpha )to raise my vit d levels when there seems to be no vit d in it , I asked the Endo and he said it would certainly be effective raising my levels but I saw no benefit after a year .

Parbrook profile image
Parbrook in reply to Avalynd65

The point about Alfacalcidol is that is is not Vitamin D (so it will not show on a Vit D blood test), but it gives the same outcome as Vitamin D.

Avalynd65 profile image
Avalynd65 in reply to Parbrook

Thanks yousurname, I think I get what you mean so how would I know if it was working or not for me ? The GP keeps running vit d test and I mentioned in an earlier post that I can't seem to tolerate. Vit D3 in high doses . He suggested me going from 1mcg to 2mcg (my calcium level is always low but i have to add calcium now due to osteopenia )but if it is not going to show in my blood tests I am not sure how that will help other than go on symptomatic relief maybe ? Your thoughts on this would be appreciated thanks .

Parbrook profile image
Parbrook in reply to Avalynd65

My (very limited) understanding is that your calcium level is what gets monitored when taking Alfacalcidol.

If your calcium is low, maybe you have a parathyroid problem (hypoparathyroid), which hypohen tells me is very rare.

Maybe you need more calcium?

Avalynd65 profile image
Avalynd65 in reply to Parbrook

Thanks , I will have to ask tbe GP more questions at my appt tomorrow .

Mini70 profile image
Mini70 in reply to Parbrook

Hi, you sound like you know enough... my mum was diagnosed with an underactive parathyroid (hypoPARAthyroidism) it is rare but she take alphacalcidol 1mg x once a day and .25mg x twice every day. She has to take it since she had an operation all those years ago to remove the para thyroid when the consultant prescribed it. She is now 61 and has to take it for life. She has no kidney problems.

roslin profile image
roslin

I have been on alfa for many years dur to having no or maybe a few functioning parathyroids.

hpth.org.uk/hpth.php?id=27

(extract)

Alfacalcidol and Rocaltrol are the brand names of different types of vitamin D analogues which provide calcitriol ( the active vitamin D , or hormone also known as 1,25-dihydroxycholecalciferol). Alfacalcidol is converted to calcitriol in the liver. Rocaltrol is calcitriol. Alfacalcidol is used more in the UK , Rocaltrol in the USA.

Please note: These are not vitamin D3 supplements that you can buy over the counter but potent steroid like hormones that will be prescribed by your doctor and will require careful monitoring.Do not adjust these tablets on your own.

Doses up to 5mcg daily may be required though around 2 - 3 mcg is more usual. As Alfacalcidol helps your body to absorb calcium from the gut, ie from your diet, the more Alfacalcidol you take the fewer calcium suuplements you will need.

If you also have epilepsy please be aware that some of your medicines (Phenobarbitone, Phenytoin, EpanutinÒ , Carbamazepine, TegretolÒ ) reduce the levels of vitamin D in the body. Larger doses than usual of Alfacalcidol may be required to compensate for this effect.*

Alfa should not be used for vit D def and could be dangerous as it could increase calcium too much. keep an eye on increased thirst.

Please go back and discuss with your GP

roslin

carroll998 profile image
carroll998 in reply to roslin

Hi..u seem to know your stuff 😊 I could do with a little advice ..parathyroid increased for a few months following thyroidectomy ...having to take 3000 cacichew every day having a really negative effect on stomach also on Vit d3 and magnesium...my parathyroid had decreased over last 2 months ..9 months since op I pestered my endo to put me on Alphacal he has reluctantly cause he says could finish off last remaining parathyroid but agreed wasnt happy with it decreasing....I'm only wanting to take alphacal cause cant tollerate calcichew. .shall I give it a few more months ..I'm looking for advice please

silverfox7 profile image
silverfox7

Done a bit of digging but all say a type of Vit D whereas the Adcal I take is +D3 which I was told was the only form of Vit D to consider. I put in into MediGuard and the only thing that says is that 76% are happy with it but doesn't say why the others are not! Things like magnesium say side effects diarrhoea but to say nothing makes me think 24% thought it did nothing! It may be that you have other issues as to why you haven't been given D3 but discuss this with your GP. It may be he hasn't had much experience or doesn't know about D3 being recommended. I suspect that nothing much is said about the drug you are taking because its not doing much and I also suspect that is why you are asking about it! There are some good articles about Vit D so read up before you see your doctor. Good luck.

Avalynd65 profile image
Avalynd65

Thank you silver fox and roslin for those explanations . I have no idea why I was given one alpha as my problem was vit d deficiency and other than Hashis and severe joint pain that was it at the time . I have stopped the one alpha twice now to take ordinary d3 which I just can't tolerate and always felt worse but as soon as I go back on the one alpha my joint pain improves . The reason I asked the question was because I was confused as to why I could feel better on it but yet every vit d test the gp has ordered since (and I must add he checks my calcium regularly too) me going on it had the same level as when I started , 24. So I have questions for the Gp now and should I give it up despite me feeling better on it , frustrated .

Avalynd65 profile image
Avalynd65

Update - it seems the GP I saw instead of the one who prescribed the one alpha has no clue why he would have put me on this for vit d deficiency . She is not familiar with it but looked it up while I was there . I explained that I have tried to stop it a couple if times now but I seem to get symptoms of increased fatigue , headaches , general malaise , she said I would be better to go off it but seriously it seems to have a bad effect on my body when I try , I didn't take it fir the last two days but had to take it today as I could not function . I might try every other day and see if that helps . Obviously it's something to do with my blood calcium which has been low normal the last while . Having more blood tests next week . Really annoyed I was given this in the first place.

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