Has anyone had this test done? My level was 326 mg with a range of 35-250. I looked up possible causes which are hyperparathyroidism, sarcoidosis, paget's disease, kidney stones and various others including kidney issues. I also had high pth and low vitamin d with high normal calcium on my last blood test. The latest doc I saw for Osteoporosis did a new blood panel but I don't have the results yet. I just wonder if the fact that I took a calcium supplement that day and my blood sugar was high all day making me urinate more affected the amount of calcium excreted? I started taking calcium citrate with vitaminD 2-3 x per week again since I don't think I'm getting enough in my diet. I do tend to go a lot anyway and I'm wondering if something else is going on, I drink a lot of water too so I've always urinated a fair amount and also had some issues with feeling like I have to go a lot. I also wonder if I'm not absorbing calcium and other things for some reason? I know we just urinate out supplements that aren't needed usually.
If you had high calcium in urine what was the cause of it, were you able to figure it out?
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Taking calcium supplements before a blood or urine test may return a high calcium result.
High PTH with normal or high calcium and low vitamin D can indicate hyperparathyroidism. High PTH will often cause calcium to rise.
If your serum calcium was in normal range you do not need to supplement calcium. Too much calcium can cause kidney, bladder, gall stones. Excessive thirst and urination are signs of hypercalcaemia.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
If it may return a high result how do we know if it did or not? No one told me to do anything different or not to take a supplement before the test. I think I took it the day before but I can't remember now. I will ask the doc if he thinks if the supplement caused this.
I do have hyperparathyroidism, my endo said he thinks it's secondary to low vitamin D while the new doc thinks it may be primary hyperparathyroidism and involved in causing osteroporosis. The excessive thirst and urination can also be a sign of blood sugar issues, mainly high blood sugar but also fluctuation because I also urinate when my bg goes low. I wouldn't say I feel excessively thirsty now- maybe a bit more than usual but not like when I was going into dka certainly when I drank a gallon of milk and a whole bottle of orange juice in one day. I have always drunk a lot of water for health reasons so urinating a lot doesn't always seem that unusual, the feeling of having to go a lot isn't normal though I think, although no one has ever been able to figure out a cause for that. When my bg goes high I automatically drink water to help lower bg along with insulin bolus. Once you go above 180, the kidney threshold, you start urinating more to get the sugar out of your blood.
So basically what they say about supplementing calcium for osteoporosis is not correct? Because most people have normal serum calcium unless they're dehydrated or have something else going on. I know I don't get anywhere near the recommended amount of calcium for my age range in my diet, also I suspect I'm not absorbing a lot of what I eat due to various issues.
Editing this to add the instructions for 24 urine collection from the mayo clinic: for urine it says don't take a laxative- nothing about calcium or other supplements. I do eat a lot of prunes still so I wonder if that affected it?
You shouldn't be taking calcium as your symptoms and test results do show hyperparathyroidism, more likely primary than secondary. Taking extra calcium is going to make things worse. You should ask for an ultrasound and sestamibi scan to look for any adenomas.
Thanks bantam, I've had an ultrasound which showed a grainy thyroid not sure if you can even see pt on that. No adenomas visible. My ent said he wouldn't recommend one at this point. I read at the Norman site that sestimbi scans often don't show them either. So I wonder if it's worth doing it? I will ask the doc who ordered the 24 hr urine to do one. I've stopped the vitamin d & calcium for now because I'm starting to feel very ill. My vit d has k2.
I never take vit c it makes me ill. None of my other sups have calcium. I take ranatadine- no calcium.
I will see what the next blood work shows. My endo had said to increase D but I think it's making me sick. Nausea headache and terrible Bg.
An ultrasound might not show anything especially if done by someone not experienced in looking for pth adenomas,
mibi scan usually picks it up but not always. If all the signs point to hpth a skilled experienced pth surgeon will find the problem gland.
If you are heading towards hypercalcemia you will feel ill, you can try to cut back on calcium rich foods as well as stopping the supplements and get a calcium and pth test done at the same time.
If your Endo is dragging his heels as most prefer to do with hpth you need to find a new one asap.
Thanks Bantam, so far I've only had one high serum calcium with no pth for that one. I don't think any pth surgeon would do surgery on me and I wouldn't want them to. If it does turn out to be primary I guess that will be my only option.
I guess I will just have to wait and see what future blood tests show. I have stopped the calcium supplements now as well as the vitamin D, I'm just going to go in the sun more since you can't overdose D that way.
At this point in time I can't find a new endo and it's easier said than done. I have multiple issues going on as well as a sick kitty who I adore and it's all becoming a bit overwhelming. Hopefully the osteoporosis doc will do some of this testing and maybe the scans and at some point I will go to someone else to evaluate the thyroid/parathyroid issues. I may ask to do the 24 hr urine again after I've been off the supplements for a couple of weeks and see if it's still high. I assume the cheese I eat won't cause a high calcium level the way a supplement might, unless there is something else causing it all like primary hyper pth.
Apart from the calcium citrate you mention are there any other sources of calcium in any supplements you take? For example, some vitamin C supplements are made from calcium ascorbate. The ascorbate part is the vitamin C, but the calcium in it can't be ignored. You may be taking more calcium than you realise. Do you ever take antacids? They often have calcium in too.
Do you take any vitamin K2? If you don't you really ought to.
Why do you think you Don't get enough calcium in your diet? A gallon of milk and a bottle of orange juice sounds like an awful lot of calcium, to me.
OK, I realise you Don't do that every day. But, there are a lot of things that contain calcium that you wouldn't think of. Perhaps you eat some of them, apart from dairy? (I beleive you're vegetarian, aren't you? Or am I muddling you up with someone else?)
If you eat fish, tinned salmon and sardines contain quite a lot of calcium. If you Don't, then try :
dried figs
white beans (I've got the most gorgeous recipe for white been stew, if you want it!)
Bok Choy
blackstrap molasses
kale
black-eyed peas
almonds
oranges
turnip greens
sesame seeds (sesame seeds aren a wonderous source of nutrients, and you can do so many things with them)
Taking calcium suppléments without getting tested first, just because you Don't 'think' you get enough in your diet, is a very bad thing to do. Taking calcium suppléments is best avoided if you possibly can, anyway. It's like eating rocks! I've posted several articles about that, in the past. You'll find them on my profile, if you're interested.
Gg, in my post on raw veggies this was discussed. I had decided not to eat goitrogens- most of my veggies have no calcium. Figs are too sweet and a lot of those foods are goitrogens. I don't drink cow milk. Or oj- only for lows sometimes. I drank that when I was going into diabetic Keto acidosis from lack of glucose metabolism and severe dehydration as well as ate everything in site while loosing weight. I was giving that as an example of extreme thirst. I'll try white beans. I eat lentils so it's down to cheese 2-3 slices a day and almond milk which don't have much calcium.
I'm sorry, I Don't remember a discussion on raw veggies - well, I remember it was discussed, but Don't remember the détails. But I'm sure I told you it really wasn't necessary to cut out all goitrogens. But, if we're going to pick nits, almonds, lentils and white beans are goitrogens. Do they make you feel bad? If not, then the other goitrogens probably won't either.
It's ok, dont' be sorry. I'm still eating the raw veggies but I just decided just in case I would cut out the kale/bok choy etc. I wasn't aware lentils etc are also goitrogens. Oh well, as I said before, there is NOTHING left to eat, lol.
I feel bad most of the time from my bg and it's really hard to tell if a certain food is the cause unless I get severe runs etc. I've had IBS most of my life so I have those symptoms alot.
Goitrogens impede the uptake of iodine by the thyroid gland. Which means that temporarily - temporarily - the gland has trouble producing enough hormone for the body's needs. Which could possibly - but not necessarily - cause a goitre.
If you do not depend on your gland for any of your hormone, then they're not going to affect you at all.
Even if you do depend on your gland for some of your hormone, not all goitrogens are going to affect you, just the odd one or two. So stopping them all is rather like throwing the baby out with the bath water - over-kill.
They do no permenant damage to the gland, absolutely none. When you stop eating the goitrogen in question, things go back to normal.
And you would have to eat a hell of a lot - I mean like cabbage or something with every meal, every day for months - for them to cause a goitre.
And they have no effect on Hashi's antibodies. They are nothing to do with antibodies.
Warnings about gotrogens are more for people on no thyroid hormone replacement, rather than for those being treated - especially not if you are on a full replacement dose.
Ok, maybe that was what she said because I remember her saying something about goiters.. I don't think I have that though since the scan report said my thyroid isn't enlarged.
I was eating a huge amount of kale though and I think it was too much really. I'm not sure what to do honestly. My bg has been very high and I'm not feeling well at all. I do wonder if it is the levo that is causing it and if I should go off it. I'm sure my thyroid is making enough to keep me going for years prolly. High bg like I've been having isn't worth feeling a little better and lately I feel worse.
CDE= certified diabetic educator- she helps with the diabetes management and pump training etc.
Well, she wouldn't know much about thyroid, would she. And if your BG is too high, doesn't sound like she's doing a very good job with the diabetes, either. What is pump training?
Obviously, eating massive amounts of just one thing isn't good. But cutting it out completely is hardly necessary. Unless it's like peanuts - once you start eating it you just can't stop! But I have my doubts on that one. lol
All things in moderation. And the only exception to that rule is soy!
Do you have copies of your blood tests? If not, that should be your first step - getting copies, before you make any décisions about going off Levo. If you're thyroid isn't properly managed, you won't be able to manage your diabètes, either. These things are all interlinked.
GG I replied to this but it didn't show up. I always have copies of the tests- the last test tsh went up to 2.9 and t4 went up to 1.6 I think. I don't see my cde very often and there is no way anyone can be perfect for bg management, it is a 24 hr a day job and I have too much variation to be able to ever predict what will happen. She is hypothyroid herself so I assume she knows something about it- so is her son who is also type1. I have to say lol on your bg is too high because as a type 1 with varying bg there will be many instances where my bg is too high for numerous reasons. The reason I think it is worse is levo though. I guess the hyper parathyroid thing may be affecting it also.
I'm not so sure about properly managing the thyroid anymore, they both likely affect each other adversely, but if levo is going to make me run this high and have a lot more volatility I will stay off it for as long as possible.
I was eating a huge amount of kale so I cut it out for good now prolly, maybe I will eat it occasionally.
You certainly do have a lot going on, there. Have you tried adding in some T3 if Levo doesn't make you better?
Just because your cde is hypo herself, doesn't mean she knows much about it. Dépends who she believes (her doctor?) and if she does much research herself. Maybe you should suggest she comes on here.
I haven't, I asked my endo about that last time and he said lets see what the next blood work says. With everything going on it is going to be a while before I get more blood work. I have to call and get my more recent results for some reason they haven't been posted online with the urine calcium results. They were done at the new doc office but they said they would send the blood to my lab.
Well, I guess she knows something but your'e right everyone's knowledge is different depending on how much they research. Being the mom of a type 1 and someone trained etc. I would expect her to research. I may do that, lol. However I wouldn't want my docs etc. reading some of my posts here.
I did this test, my calcium was over 650mg. Had two parathyroids removed and they also took out all my thyroid because it was enlarged, non-compressive goiter. Wasn`t cancerous. Wasn`t taking any supplements at the time of the test.
I'm glad yours worked out ok and there was no cancer. I'm not sure how I feel about a surgery, it's not clear yet what is going on with me. My thyroid is grainy but not enlarged.
Did you have high serum calcium? So far I have only had one high serum calcium of 10.3 last June and I didn't have a pth then. I'm still waiting for my new blood test results. Right now one of my kitties is ill so this will all have to wait.
My serum calcium wasn`t much higher than yours, my pth was fairly high and getting higher. This means that my kidneys were very good at removing the calcium. Over time though your kidneys will become calcified or as it were, turned to stone. Parathyroid.com is an excellent site to explain your parathyroids and also high calcium levels for any reason. Hope your kitten gets well, they can be so sweet.
How high was it? My last one was 9.7. Pth was 65 I think- it was above range but not super high. . Vit D was 28. Most calciums have been in the 9's. So it's not high enough to suggest a tumor. I have read the site- very good info the apps say it could be primary or low vitamin d- it's not conclusive. Were all your calcium levels Above 10.3?
That sounds awful about the kidneys. I hope that's not happening to me.
Thanks- I'm praying for him. He has been ill for a while.
Dr Norman of parathyroid.com says we do best in the nines on calcium. Mine was only 10.4 because my kidneys were keeping it down. My pth was only a little high at first but went up a lot in just 2 or 3 months. Its been 4 years so I don`t remember all the numbers. Now my calcium comes in at 8.8 with a supplement, that`s the very low end of the range but I feel ok. I have to work the calcium in between my thyroid meds and my iron supplement so they don`t cancel each other out. Separate by 4 hrs. My iron has been low also. I think my first pth was 68 but went up after that a lot. Just thankful I still have 2 parathyroids. The high end of normal range 10.2 for calcium.
Thanks Gerald, why are you taking calcium now? Is it due to the pt removal? Did you have low vitamin D at that time too? I wonder too now if my kidneys are doing a good job of keeping calcium lower. Did you get diagnosed as primary right away?
With a calcium of 8.8 plus the fact I am getting older, 68, is why I take calcium. I don`t recall a low vit D, however I take 1,000mg a day now. My endo, at the time, wasn`t going to do anything untill the urine test came back so high.
Thanks Gerald, Normally the pth system will lower vitamin d when you have a tumor in order to lower calcium absorption and keep serum calcium lower. I will see what this new doc and my endo say about my urine calcium being high. This could be the early phases or primary hyper pt for me. When you were diagnosed as primary did your endo refer you to a surgeon? What area are you in?
I am also starting to feel some more irritation/burning and I wonder if this is worse and is from the calcium?
I live in Texas, USA. My endo did refer me to a surgeon, turned out to be a very good surgeon. Had been to S.Koera to learn a kind of robotic surgery only a few doctors know how to do. I wasn`t given that though because my weight was a little too high at the time. He actually knew who Dr.Norman was and had talked to him on the phone a couple times.
Didn`t know about the vit d connection, and don`t remember any burning or irritation.
That's good you found a good surgeon. The lowering of vitamin D is talked about on the Norman site. It's protective but it is often mistaken for secondary hyper pt due to low vitamin d, which can also happen. I doubt you would also have high excretion of calcium in urine though and a high normal serum calcium as well if it were secondary.
I contacted the Norman center but their fee for just reviewing your case it too high so I'm going to ask my osteoporosis doc if he can refer me to someone in my area. I'm in NY.
I wanted the Norman clinic also but they charge over and above what medicare would pay if you are out of state. I was just glad to get somebody with experience.
That is good, I heard it's hard to find a good surgeon for this. I don't understand why they charge that much just to evaluate you.
Well, my pth result was posted online with some other tests this doc did: C3 and C4. But not the rest of the blood panel yet. PTH is in normal range now at 51 still at the upper end I think. I'm not sure what serum calcium is yet. I think he tested me for lupus and he said other autoimmune diseases. It looks like I don't have lupus form the c3 c4 results but I will see him soon to find out what the other results are.
In the meantime I have stopped taking all d, calcium and now levo because my bg was crazy high last week and I couldn't stand it anymore. It has been fluctuating around from high to low like crazy and I hope this will calm down once the levo gets out of my system.
Well my numerous test results were finally posted online. It looks like I don't have other auto-immune diseases at this point such as lupus and ra and more.
My results were normal except for wbc 3.5(3.8-10.8) ,absolute monocyte low at 180(200-950), +1 ketones in urine and calcium was 10, pth was 50 and vit D was 30. And then of course the high urine calcium.
I do wonder though if it's primary why my pth went down, I think you said yours was normal but your calcium was high?
I added these new values into the calcium pro app and the vitamin d app.
The vitamin D app said it is highly unlikely now I have secondary hyperparathyroidism or primary low vitamin D and told me not to take any vitamin D unless under medical supervision.
The Calcium pro app said it is very likely now I think that it is primary, and very unlikely that it is secondary.
I'm not sure what to do but I will see the doc tomorrow, see what he says and ask for the sestamibi scan. I will have to find another endo to evaluate all of this.
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