low calcium, iron, vitamin d?

[hamble99b]

I have WG. my calcium levels keep dropping to very low and recently been diagnoed with severe anaemia, my vit d level has dropped twice. Anyone similar? regards, sandra99b

[Hidden]

I have WG too Sandra & although none of the above have been an issue for me, I do know of others who have suffered, particularly with low calcium levels. This is usually caused by continued use of steroids. Are you or have you been on high doses of prednisolone?

[hamble99b Volunteer]

thanks Martin,

7.5 of pred and 12.5 of mtx . I've been on same dose of pred for 15+years 18 in total.

regards, sandra

[JacquiM Volunteer]

Hi Sandra, another WG sufferer here.

I am seen by the renal clinic but was referred to the rheumy people after I kept complaining that my joints in my hands and feet were really painful. The rheumy doc told me that my VitD levels are very low, she gave me a VitD injection and told me to buy a VitD supplement from BOOTS - 25ug and I take one a day.

I told her that I had bought Osteocare calcium/magnesium/vitD tablets but she told me not to spend my money on them as I am already taking ADCAL, I have been taking since I was diagnosed April 2011, and they should be sufficient.

Ask your doctors if they could prescribe you ADCAL, or similar, if not already taking.

Take care

Jacqui x

[Galaxy2]

Hi Sandra

So far my calcium levels are ok but I have been taking adcal for some time, but I was found to have a severe vitamin d deficiency recently and was put on a dose of 40,000ius a day for seven days to correct it. My specialist said that it can cause extreme weakness and tiredness and could have been contributing to many of my symptoms.

I also have continuous low iron stores and despite continuously taking iron supplements it continues to be extremely low, I had an iron infusion a few years ago and felt like a different person afterwards and have been asking for one recently but it can be a risky procedure and my doctors are reluctant for me to have it again. When my ferritin levels are particuIarily low my hair falls out. I am trying a gluten free diet now to see if that helps, I've been on it for 2 months now and it can take a long time to build up iron levels so it will be a while before I know if it works. Low iron levels can be exhausting and if you can get them back to normal it should make such a difference.

Hope that helps.

jenny

[Tony-LakeDistrict in reply to Galaxy2]

Hi , I have had 3 iron infusions twice over the last 4 years, so much better after each.

My specialist says taking iron supplements is a wast of time for conditions like ours,

It might be worth checking out

j-pouch.org/eve/forums/a/tp...

Hope this helps

Tony

[Galaxy2]

Hi Tony

Thanks for that, I agree that taking iron supplements seem to be a waste of time and the only thing that has worked for me is the infusion, I couldn't believe how different I felt afterwards and I wish I could get another.

Thanks for the link I will have a look.

Jenny

[AndrewT]

Dear Sandra99b,

I am on dailysis, three times a week, I also had to have a para-thyriod operation, three years ago. My Calcium level dropped dramatically, I am now on suppliments. My phosphate levels are aslo monitored, can go high, if I do not take 'binders', with meals. I hope this is of help, to you, please do let me (us) know, will you?

Best wishes

AndrewT