Supplements

I was told that once off prednisone, I'd be off Fosamax as well.

Very wise advise as always Eileen. Can I ask something in regards to your comment on the right levels of calcium and Vit D. I’ve taken both of these since starting pred 7.5 months ago, even though my bloods at the time showed normal range calcium and vit D levels. After the dexa scan beginning of December the dr increased the dose and changed the brand to one that is supposed to improve bone and muscle health. I hoped I could fight my osteoporosis by doing everything right eating and excercise- wise, but I start the Prolia in a few weeks once I return from overseas.  My last two blood tests showed elevated calcium levels, the last one taken this week higher than the first so on the way up. With my t-score of - 4,  I expected to be in the  low or normal calcium  range. Does Prolia increase the calcium levels and if so, what then are the effects of that considering they are already high?

Depends doesn't it? If your bone density is still low they will want you to keep on it probably.

Do you get adequate magnesium and are you taking Vitamin K2?  These should direct calcium into the bones rather than having it floating around in your blood vessels to settle where it's not wanted.

If your calcium levels are high then I hope they are looking as to why. It MAY be the supplements - but it could be something else. Google "hypercalcemia symptoms and causes Mayo clinic" and have a look at their page. 

If you stop the supplements and the calcium level continues to rise - it could be a parathyroid problem. In which case they shouldn't JUST stick you on Prolia. If you have a parathyroid problem then your blood calcium levels will rise at the expense of your bones - and you develop osteoporosis. So they do need to rule that out before you start Prolia.

Prolia traps the calcium into the bones and increases the formation of new bone, and hence the density. 

Yes, have taKen magnesium for years, also spray magnesium oil on painful areas, have an epsom salt bath if pain is top shelf, and rub into feet at night to aid sleep. K2 I’ve been taking with the calcium, 3x daily. 

Yes, I googled that last week when I got the results and didn’t like what I read. Kidney issues etc...don’t need that on top of my fatty liver. I drink so much water because my dad died from kidney disease after years of dialysis. So confused with the calcium levels considering my osteoporosis rating. They’ve been slightly elevated since October and on the way up but none of my drs seem concerned, I always ask how my results look and they all say”good”evertime. They are all falling over about the osteoporosis and dead keen for Prolia urgently...all of them. 

For what it's worth the Italians have done some research on coffee and fatty liver.  What they've found is that the equivalent of about five espressos a day (and it can be decaffeinated) has a measurable effect on the liver and can lead to returning fatty liver to normal.  I don't know if there would be other factors involved for individual patients with other problems.  

Wow, I didn’t know that. I am only a one cup in the morning type of gal, with the occasional  chai late when I’m  out.  I actually reduced my coffee intake once I started my anti inflammatory diet. 😏

I like that. Have no idea if liver is fatty but like that now there is a reason to have more espressos, 

It was on a tv series about superfoods, exposing the questionable and telling about good research on the good, which included this segment on coffee as well as an item about natto, the source of Vitamin K2 supplements.  In both cases the researchers were unequivocal in their view that the research did show that the substance they were researching was helpful.  Later I checked the internet and there is nothing indicating that the research was anything but legitimate.  So, bring on the coffee, but not the cream and sugar! ☕

I've already said it haven't I: I'd like to know your vit D and calcium treand. I'd want my pituitary function checked...

Hope this is Ok to post here, and makes sense to you. Not sure how else to do it.

Ca: Oct 2017 - 2.64 , Jan 2018- 2.73

Corr Ca: Oct 2017 - 2.56, Jan 2018-2.65

Urea: Oct 2017 - 8.6, Jan 2018 -  9.3

?ALT: Jan 2016 - 78, ( I had major sinus infection), Aug 2017 - 43, Oct 2017 -33, Nov 2017 - 77,Jan 2018 - 32

?AST: Jan 2016 - 78, ( "  "  "

?GGT: Jan 2016 -82, ( " " " ), Aug 2017 -43, Oct 2017- 46,  Nov 2017 -77, Jan 2018 -62 

Chol:  Oct 2017 -6.4, Jan 2018  -5.7

WCC: Aug 2017 - 15.3, Nov 2017 - 14.1

WBC: Oct 017 - 11.5

?Neutrophils: Aug 2017 - 14.6, Oct 2017 - 10.5, Nov 2017 12.49

Lymphocytes: Aug 2018 - .64, Oct 2017 - .8

?Plat: Oct 2017 - 404

?These are just the ones that were  outside the normal range and marked in red, though the recommendation from pathologist to rheumy was  "No Action" every time.  I'm not sure what the code for Vit D is on the test, but if it was tested it must always be in the normal range as nothing else was outside it.     

?

I think most of those would be increased by being on pred -  but I would want to know why they thought that calcium level was OK. 2.5 mmol per litre is usually considered top of the range and recommended is 2.25. 

Google "causes of raised calcium levels" and look at the parathyroid website - and then ask your doctor why they haven't checked your parathyroid hormone level and what your vit D level is - the number, not just "normal".

I’ll do that. Thank you. And the odd thing is, those  calcium tests have only been requested twice, since being on pred, all the others are repeated every time. And as I said before, to have the t score of -4 really threw me. Here I was told early Decemeber to increase my calcium intake via diet and supplements yet it doesn’t look like I needed to. 🤔

Checking on my results they have 2.2 - 2.6 as the range so perhaps the goal posts have changed. Mine are currently 2.57 and are in green. 

Every lab will be slightly different but Reece's lab classed them as high - and the second is higher than the first. It is that and the severe level of osteoporosis that is what concerns me. I'm sure it will turn out to be OK - but better safe than sorry I always feel. So many doctors don't "get" the parathyroid thing and it is so easily missed.

Wowzas....googled it, didn’t like it, so have emailed the dr for another blood test for calcium, Vit D and check for parathyroid disease before I start Prolia. Can you tell me the code on the tests for Vit D though? Is that the Cor Ca one? There are always 4 pages of test results but just not sure which is Vit D.

Heck - NO!!! 

Ah - right, corr ca will be corrected calcium: "Many laboratories report corrected calcium or Ca (corr) which is just total calcium adjusted to compensate for abnormally high or low levels of albumin in the blood which can cause the total calcium level to appear falsely high or low."

Doesn't vit D appear as vit D? Or maybe 25-hydroxyvitamin D and/or 1,25-dihydroxyvitamin D???

On the test taken August 2017 ( 3 months after pred) I can see that he requested Vit D's, and the result is  51, units nmol/L, reference (50-140). Comment is "consistent with Vit D adequacy."

Looks only just above the low range to me, but it was coming out of winter and I had had a rugged few cold months in the middle with the extreme symptoms of PMR/GCA from January to end of May when it was diagnosed.   Then it  goes on further to say a generalized "Vit D adequacy can be defined as a level >49 nmol/L at the end of winter - the level may need to be 10 -20 nmol/L higher at the end of summer to allow for seasonal changes."

The test in Oct 2017 was taken by a different pathology lab, and the rheumy requested GLU, ESR, CRP, MBA , LIP and FBE. I can't see anything on any of the pages of results that pertain to Vit D, unlike the previous test that had a separate result for Vit D quite plainly. That month my Ca was 2.64, Corr Ca was 2.56. If he tested for D, would it be under FBE, Lip, or MBA, or even Plat? It had a slightly raised level with a comment of Neutrophilia present.

Nov 2017 requested  tests: LFT's, Cr(s), UCreat(s), CRP's, FBC(e) ESR(e) - not sure if  there are a few pages missing as I only have results for Cr(s), UCreat(s),CRP's, FBC(e), ESR(e). Can't seem to see a page with LFT results, and no Ca or Cor Ca results anywhere either. Probably on the missing page. 

Next test was Jan 2018 (last Wed)  for GLU, ESR, CRP, MBA,LIP, FBE. Ca was 2.73, Corr Ca was 2.65...again can't see anything pertaning to Vit D unless is has a different code altogether than what you mention.   There are quite a few things measured in nmol/L though, e.g PO4 , Bili, Urate, Creat, Urea,  An Gap, HCO3, Cl, K,Na. Any of these Vit D? 

 

   

Hi Reece

My vit D results have vit D in the title and I would have thought yours would, it will be a separate test not included with anything else, it is not any of the things you mention. Probably the same heading as you had in August. As you were OK perhaps they did not worry with a vit D test, I only have a vit D test once a year and I started at 25. You do seem to be lucky they are doing so many tests so often. I normally just have ESR and CRP regularly, the rest are at least six months apart unless there was a problem then I talk to my doctor, usually over the phone. 

As ptolemy says, vit D is generally a separate request and doesn't come under liver function or electrolytes for example.

Thank you Eileen and Ptolemy, it seems you may be right in that it’s only been tested once. The rheumy always requests these tests to be done a few days prior to each visit, and I’m not due for another for 3 months. Meanwhile I’m due to start Prolia as soon as I return from NZ early February. On Eileen’s suggestion I have emailed my GP requesting he checks for parathyroid problems so am just waiting on his response. Maybe he’ll request more Ca and Vit D tests as well.