Any one here hypocalcemic?!!

[wonderbug]

Hi all, havent posted in a while, but this is really wierd!! the first blood test from the doctors came back with showing no "signs of lupus" but he did say you can have an ok blood test and still have lupus...is this true?? Any way, i finally got my referal to the musculoskeletal dept, and a blood test there has shown my adjusted calcium level is 1.63 (normal levels being 2.15-2.60) and with my other symptoms (a list as long as my arm..they are on here in another thread somewhere!!) he has said i am hypocalcemic, gave me a website adress, and told me to ring my doctors asap because this was not his department!!! oh, and i have snapping hip syndrome, which,luckily, was his department....but theres a ten week waiting list for it!!!:rotfl:
so, anyone here have low calcium levels?!!
beki.xx

[daymay]

really? this is interesting because I had a blood test done a few years ago showing no signs as well, but now I am going back for more testing b/c I think they were wrong.

hope the calcium thing works out!

[Maia]

I don't, but if I recall correctly a problem with the parathyroid gland can cause calcium levels to be off. It might be something you will want to look into before your next doctor visit. Hopefully some medication can fix this for you...

[hollyhk]

Hi Wonderbug,

Actually, I have the opposite--hypercalcemia--my blood calcium levels run 11-13 which is quite high. When i started feeling really ill last summer before diagnosed with the lupus, this is one of the first lab abnormalities I had.

Maia, you are right about the parathyroid gland, but I think the benign tumours associated with the pt gland actually cause high calcium, not low, but I am not 100% certain of this. Many of the symptoms of hypercalcemia resemble lupus, particulary fatigue. I was quite disappointed at the time that my PTH levels were "normal" because a simple outpatient surgery where the parathyroid tumour is removed makes the person feel better within hours of the surgery. Unfortunately for me, we still dont know what is causing the hypercalcemia.

I wonder if you are on any meds that would make your calcium low. Also, too much soda, caffeine, etc. can cause this.

And, yes, you can have lupus without a positive ANA lab result, though I think that eventually most people with lupus show a positive ANA at some point.

Hope you get into see the specialist soon and get some answers. I know how tough it is to wait while not well.
HUGS
Holly

[wonderbug]

hi everypne, and thank you!!! Mia...you were right hun!!
As confirmed by the hormone specailist...i have hypoparatyroidism (hope ive spelt that correctly, my brain feels like cotton wool today, and its taking me ages to type!) its all to do with LOW calcium though. im trying to find out info on the net but most is to do with the opposite, as you explained about holly, gosh that sounds dreadfull, i hope you get to the bottom of it soon! and, yes daymay...keep pushing for more tests, im sure you will get there eventually.
I will be really interested to hear if anyone has the same as me...i feel like a freak!!!
Love and hugs to you all!

Beki

[Lily]

Hi,

I hope you can see a really good Endocrinologist who can help you get to the bottom of this. Parathyroid problems can cause a vast array of symptoms and there are many reasons for them. And it may turn out that your Parathyroid is ok too and there is another reason for the low calcium.
I went through a lot of testing and investigation prior to my Lupus diagnosis because of a very low vitamin D level.

http://www.endocrineweb.com/hypopara.html

Actually that whole site is a wealth of information and very helpful to those with any endocrine disorder.

Take care,

love
Lily

[wonderbug]

hi lilly,
Thanks for that link, really infromative..but im still unsure if i would need the old type op. or the new much quicker 1, as it says for hypoparathyroidism i may need a whole ectomy, and that means having an 8 inch cut across my neck!! how macabre!...i will be seeing the endo's again in a day or two, must write down all the questions i have, otherwise i will carry on like a blithering idiot, and forget everything i wanted to know! why do our brains go to mush as soon as we enter any medical building!!?? im sure im not alone there!! my head is buzzing with everything at the moment, with this, all the other symptoms i have, and the depression getting deeper, at least i can always come to this site and cheer myself up a bit!
Thanks guys!!
HUGS
Beki.xx

[Lily]

Hi there,

The treatment for hypoparathyroidism is not removal of the parathyroids. They are sometimes removed when the opposite condition (hyper-parathyroidism) exists. So dont worry about surgery :hugbetter:


Treatment of Hypoparathyroidism
http://www.endocrineweb.com/images2/arowblue.gifVitamin D and calcium supplements are the primary treatments for this disease regardless of the cause. The only exception is when the inactivity of PTH is due to hypomagnasemia which is readily treated with magnesium supplementation. At this time, a replacement form of PTH is not available.

It's a rare condition but much more easily treated.

I hope your docs have measured your parathyroid hormone, I presume they have seeing as they are saying its underactive............mine wasnt but still I lacked Vitamin D. My calcium levels were ok though as was my magnesium levels. There are other reasons for a low vitamin D level (in my case) and a low calcium level (in your case). Its a very complex area, but it sounds like you are in good hands and they have further investigation to do. Let us know how you get along, I'll be interested to see what turns up.

It might be helpful to know that the problems I had were before I was diagnosed with Lupus and were just an incidental finding. They corrected that problem but I still kept developing new lupus type symptoms and my ANA turned positive. Sometimes Lupus leads them a merry chase of symptoms and slight blood abnormalities before they actually catch it.

Sending hugs,

love
Lily

[wonderbug]

hi lilly!
maybe im getting confussed in reading all these web pages!! my doctor doesnt think the calcium supplements will work, and he started going on about an op...so i just assumed thats what was going to happen! on another site it says its untreatable, and nobody as yet has a cure (bummer!!) so im wondering how on earth they are going to manage all my symptoms, because i cannot carry on like this :-(
do you take vitamin d supplements then, to help? my mums bought me loads...and made me eat hearty stews and plenty of pudding, and fed the hubby and kids!!(how terrible can this get!!;-)
but i dont feel better yet...but im still hoping!
im seeing the endo guys again soon, and they will have more test results and, hopefuly, a clearer picture on whats going on! yippee!!
take care,
beki.xx

[Raglet]

Lily, sorry to gatecrash someone else's thread, but what are some of the other causes of vit d deficicency (apart from sunlight, a little hard to NOT to be getting too much sun downunder).

I have a chronically low vit d level, and take supplements. I never thought anything about it, but my rheumie has said that I must stay on them permanently. Well I always have more important things on my mind when I am with my rheumie, so I didn't take much notice. So, I am feeling curious now.

cheers

raglet

[Lily]

Hi Raglet,

Some of the conditions that cause Vitamin D deficiency include:

lack of exposure to sun (as you say, its rare for us downunder, however dark skin and little exposure could cause a problem if it was prolonged)

kidney problems

liver problems

gastrointestinal problems

parathyroid problems

hereditary disorders (rare)

inadequate dietary intake (fairly rare I'd imagine but could combine with other factors to produce a deficiency - eggs and fish are good sources of vitamin D, in many countries its also found in milk and margarines etc.)

inadequate calcium intake

and disorders or drugs that impair the mineralization of bone matrix
I've read some anticonvulsants can cause a problem

I think they are the main ones. Vitamin D is incredibly important for immune system function and theres a lot of evidence to support a lack of it can contribute to Autoimmune Diseases and Cancer also.

Merck has a pretty good rundown on Vitamin D.

http://www.merck.com/mmpe/sec01/ch004/ch004l.html

as does E-Medicine

http://www.emedicine.com/med/topic3729.htm

love
Lily

[Raglet]

bingo! Carbamazepine (tegretol) which I have been on for about 30 years for my epilepsy can interfer with the metabolism of vit d. That's probably what does it for me.

I had to go on a bigger dose of vit d for a while, now I just take one a month to keep me topped up.

thanks lily

raglet

[wonderbug]

hey raglet and lilly!
im glad you have found the cause of your vit. d problems hun. im sure you would be ok sun wise living down under...it would make more sence if you were in dreary england like me!!! i have acute polymorphic light erruption (allergy to the sun) and would probably melt in your country!!! but im wondering if the lack of sun could of caused my calcium levels to be off>
Got the endo on wed, will ask. i havent had the results from my blood back yet, but as it was the muscular skeletal dept. that arranged the other blood test and he said he was looking at thyriod function as well as all things bone related (i.e calcium) as my calcium was off, and the rest was norm. (inc parathyriod hormone levels) and the pth should of been high to compensate for the lack of calcium...and thats how they have come to this conclusion about hypoparathyriodism, and ive been told by my doc that i fit into the idopathic/ accuired catagory...and thats so rare they are not sure how to treat it, as vitamins through i.v wont just touch it! cant wait till my endo app. as things willl be alot clearer!
untill then i will keep babbaling on...so just ignore me!!!
luv 2 u all!!!

[Jirel]

this is an interesting thread as both my potassium and calcium levels tend to be a bit low despite the fact that I take supplements. They aren't REAL low but my sodium (of all things) was also low and the doctor's are starting to talk about looking into it all. So I'm very curious about what all you guys are finding out.

[Lily]

Hi Jirel,

Very interesting, those problems may go some way to explaining some of your weakness symptoms..............definitely worth getting them looked into further.

love
Lily

[cure4lupus]

I am not sure if it can cause vit D deficency also, but prednisone can leach calcium from your body. My calcium is chronicly low because of this even though I am taking supplements. I was recently switched on my diuretic to help my body hold on to calcium better. Make sure you are getting yearly bone scans if your calcium continues to be low to make sure your bones aren't thinning. Some docs won't hink of this on their own.

[flowergarden]

I alos have low calcion levels. A PCP found it ,along with a high parathyroid hormone (PTH). Hid comment was that the PTH should be high when the calcium is low. That iddn't make sense to me, so I went to an endocrinoligist. He said that there is a calcuim loop--calcuim intake and absorption (mediated by vit. D), parathroid (which tries to keep the calcuim levels at the right level, and the kidneys, which send messages back to the parathyroid if more or less calcuim is needed. If there's not enough calcium, the the parathyroid will cause the body will take ti from bones to keep the blood levels at the right level. Muscles need the right amount of blood calcuim to work properly.

In my case, it seems like my vit.l D is low. I'm taking huge amounts of the ergocalciferol form. My calcuim levels are staying at the vcery low end of normal. But my PTH is still high, meaning that it's still trying to raise the Ca. So I'm being watched.

Yet my bone density, after being on pred for 3-4 years, is still quite a bit higher than average.

My doc said that the low levels of vitl D could be caused by the low light levels in my area--mayvve like parts of the UK?

Whatever it is, nobody else in my family has the same problem.

So, go figure...

I hope your endo. finds a way to help you, preferably without surgery!

[Lily]

More on low calcium and its causes:

http://www.cushings-help.com/calcium.htm

http://www.webmd.com/hw/lab_tests/hw3833.asp

love
Lily

[wonderbug]

Hey Everybody!!
Im still no closer to finding anything out, as my endo man cancelled my appointment and ive got to wait 7 weeks for another 1, as they want yet another blood sample!! dont they belive my blood or something!??!! he does think most of the symptoms are related to low calcium, but he said not all of them are, and dont get my hopes up!! thanks alot doc!! ive asked him about the possibility of having lupus with a neg. ANA result and he just looked at me as though i was insane!!
so its another long wait for me! until then i will keep on twiching and shaking my way through the day!!! had a bit of a scare the other day...it felt like my throat was closing up, this only lasted about 10 seconds, but it really shocked me, as i was at home with the kids, and they were just as shocked as me, eventhough i was trying to act normal. my hubby has been great, rubbing my legs in the night if they get to bad, and bringing me tea (even cooked the dinner once...miricles do happen!!!) i guess i will keep reading posts, and post myself if and when i get back to the endos!! oh, thanks lily for answering that question about lupus books for that lady...i knew you would know!!
take care,
Beki.xxx

[Lily]

(((((((((Beki))))))))) ughhhhhhh another 7 weeks wait :eek: :hugbetter:

I had that throat closing up business when my Vitamin D level was really low.............dont know the significance of it except that Vitamin D as one of its functions controls nerves and muscles and it was some kinda weird spasm thing that used to scare the pants off me.

love
Lily

[wonderbug]

Hey lily!!
well, my endo says that my eventual treatment willl be vitamin d, as that helps absorb calcium! the solution is so simple, but this really has turnned my world upsidedown. i will keep you all informed of my progress!!
Bye for now!

Beki.xoxoxo

[wonderbug]

Hey all,
im here to let you all know my latest news...not good really!!

Endo guys have taken yet more bloods, to check bone profile...bla, bla, bla!! so im still waiting for this vitamin d, why dont they just give me some anyway, what harm can it do!!?:rolleyes:
and had physio apt. 2day, wish i hadnt bothered, ive now got spondylisthesis (something to do with slipped vertibra in my back i think!) on top of everything else...i really didnt want to hear more things wrong with me..ive got enough to contend with, without this aswell!!!!!!!!:eek:
and im being reffered to the rhumeys for possible arthritis 2 boot!!
Life just gets better and better...not!!

if anyone has any info on the above condition please let me know!!
Take care, and keep smilling all!!
Beki.xxxxx