ALFACALCIDOL

[rachelmuggeridge]

Hi all, just wondering can anyone help me with this. Is anyone on Alfacalcidol? If so have you have kidney problems from it? Because I have since they’ve just upped my dose😱. If you have had problems what have they done to sort it out ? Thank you 😀

[Soneram]

Yes I’m on alficidol since I became a dialysis patient I have CKD they are a vitamin and calcium capsul

[Cashew64]

Hi,

Yes I have taken Alphacalcidol (1.75 micrograms) for the last 27 years following sub-total Thyroidectomy for Chronic Thyroiditis (Graves?) My parathyroid glands were injured or removed resulting in full tetany twice ; so I need to take Vit D in order to absorb Calcium. Alphacalcidol is active Vitamin D so its in the basic form which does not need converting by the body like Vit D supplements. (This I was told by my Dr protects the kidneys and other organs so safer long term) This enables calcium in my diet to be absorbed in my gut. I do not take calcium supplements! If I experience the start of hypocalcaemia (pins & needles and chest pain, hyperventilating; I drink milk and have yoghurt asap...it then subsides) I take my once a day dose in the morning with my levothyroxine 100 micrograms 30 mins before breakfast.

During peri-menopause (42yrs) I experienced CKD 3a , UTI's and after menopause (49yrs) was advised of a kidney stone in my left kidney.

Last Oct I was admitted to hospital with groin pain. I was diagnosed with Diverticulitis, which coincidentally has the same symptoms / treatment as Kidney stones. Still in pain, I followed up the previous Kidney stone diagnosis and my kidney stone was growing ,now 14mm! Thankfully I have now had this successfully removed 3 weeks ago by ureter-renoscopy, with a repeat procedure to clear any remaining fragments and remove the stent. I'm now awaiting follow-up ultrasound and analysis of the stone to ascertain which type it is.

Some research does say that being on Alphacalcidol long term can cause Kidney stones, but I can honestly say that in my experience, without Alphacalcidol my life would have very different. My issues only began in the lead up to menopause. (Interestingly, I have never been able to have oestrogen based contraception so feel there is definitely a link with these hormones in my case)

Most important advise I can give is listen to your body, eat a healthy balanced diet, drink plenty of water, keep active /mobilised and sleep well. If you do get any signs of UTI or pain see your GP straight away. There may be other factors that can be the cause which are far more likely to occur than as a possible long term side affect of taking Alphacalcidol...and your need for taking Alphacalcidol in the first place may far outweigh the low risk of a possible side effect.

Keep well.

x

[Keenbean]

Hi Cashew64,

It was a great relief to read your post. My daughter had Total thyroidectomy last year and her parathyroid glands were injured. We had a yearly follow up and she just had her blood taken last week. Her parathyroid glands are still not working. She's on Alfacalcidol since last year and now looks like she'll be on it for the rest of her life. So I was very concerned but I'm glad you have been okay on them. She needed calcium supplements initially. But now she's just on Alfacalcidol. Let's see what the future holds.

Regards