anybody had these tests before?: Hi Everyone Long... - MPN Voice

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anybody had these tests before?

jillydabrat profile image
3 Replies

Hi Everyone

Long time, no post so I apologise.

Since I last spoke to anyone I have been diagnosed with Osteoperosis, so fighting a number of demons. My Rheumatologist has been concerned about my ever decreasing levels of calcium despite eating calcium rich food and doubling my prescribed Calcium supplements. The rheumatology nurse called me on Monday saying my calcium levels had dropped to 2.2 and she was sending my latest blood results to the consultant to look at.

I am suffering from overwhelming tiredness again, as tired as I was when first diagnosed with PV.

Yesterday I had a blood form come through the post requesting 12 different tests. On it was also written “Secondary causes for osteoporosis “. On the top of the form, in capital letters was “PLEASE HAVE THESE TAKEN ASAP” which worried me.

The tests ordered are FBC, PV, RENAL, LIVER, BONE. COELIAC SCREEN, SPE, TSH, EGFR, PTH, Vit D and Serum Light Chains. I know the Serum LC is taken when testing for Multiple Myeloma as my best friends husband has bone marrow cancer.

My rheumatology nurse always sounds totally bored or like she has just got out of bed so I phoned the nurse at Leukaemia Care, who answers most questions but she wouldn’t discuss what the tests were and what they were for so I decided to try my friends here who are the fountain of knowledge in most things.

I am not frightened to know things, it’s the not knowing that frightens me more, so please let me know if you have any info about these tests.

thanks in advance

Jill xx

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jillydabrat
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lizzziep profile image
lizzziep

I can’t answer your questions but just sending you a big hug! ❤️🙏🏻 and hope the tests show something easily treatable. My friend has multiple myeloma and is currently in remission from it. Best wishes, Lizzie

jillydabrat profile image
jillydabrat in reply tolizzziep

thanks Lizzie, I guess nobody knows what they are for. I can’t believe that even though these blood tests are urgent, I cannot get an appt for 2 weeks!

hunter5582 profile image
hunter5582

Hi Jilly! I agree that knowing is better than not knowing. Knowledge is power.

It appears the rheumatologist is casting a wide net testing for all of the potential causes of secondary osteoporosis. The ordering office should be willing to explain what the tests are. It is annoying to deal with a bad attitude but the bored nurse should answer your questions. I will sometimes look up a lab at the lab's online portal or website. There is often good information there.

Many of the tests your list tests I have taken at some point. Some are done on a regular basis. One of the reasons for the test include intermittent hypercalcemia (opposite of your situation). Based on process of elimination of other causes, we determined that the hypercalcemia was the result of the erythrocytosis. While not common, it is known to occur,

There was one time that I flagged with hypocalcemia. It turned out to be pseudohypercalcemia resulting from the use of gadolinium contrast for a MRI a few days before the lab.

Wishing you success in sporting out what is going on.

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