I'm not sure where to post this, but since many of you seem to have a lot of knowledge regarding Calcium metabolism, I will ask here. I had posted here before regarding calcium levels and unexplained bone loss in my jaw. My endo initially diagnosed me with low Vit D levels. I am now at a normal level (48). In the past, she also measured serum calcium levels. These were always in the normal range or low normal. A few weeks ago, she measured my ionized calcium levels and they were high.
ionized Ca 1.38 (normal range 1.12 - 1.23)
PTH 16 (normal range 11-67)
I had a second blood draw, and she just e-mailed the results to me. My ionized CA is now 1.31. She did not give me the PTH numbers, but said it was low. She feels that this is temporary and will resolve on it's own. My question is why is it high in the first place? She did put my on several cycles of vitamin d (50,000IU/wk) and Ca supplments, but I thought that you had to take extremely high doses (100,000iu +/week) of it to affect calcium levels.
Could there be something else going on? I've been looking on the web ( and I know how much doctors hate that), and there area few possible reasons
1. hyperparathyroidism
2. osteoporosis ( which I don't have in the rest of my body)
3. cushings disease
4. granulomatous disorders ( like sarcoidosis - my blood test was negative for
sarc)
5. cancer ( really hope I don't have this)
kkl,
How did you ever make out with your calcium situation? Did you ever find out the cause?
I have read that usually the cause of high calcium is hyperparathyroid. I have been having some issues myself laterly with the calcium levels.
What symptoms are you having?
You may also want to check out parathyroid.com, it has some great info on the parathyroid conditions.
Let me know how you make out.
I've had several more blood draws since this last post and my ionized Ca levels have been normal. Unfortunately, I found out recently my vitamin D levels dropped again so I'm back on the supplements.
Most of my symptoms are usually fatigue and just achiness in my legs. I also get tingling and muscle twitches.
I hope that you can find out what is going on. The not knowing part is terrible, do you have high blood pressure or a heart arrythmia or anything like that? I was just wondering if you have ever looked into hyperparathyroid. You can look at that on parathyroid.com. He says that sometimes your calcium can drop back donw into normal even when you have a parathyroid problem.
Keep us posted. Hope you are feeling better soon.
Hi kkl: Somehow I missed this post back in Sept. and was wondering if your dr ever mentioned that taking high doses of D could raise your calcium levels? I have hypercalcemia but my score isn't as high as the one you posted. For me they have never figured out what is causing the elevated Ca, but I've been told by both my Endo and Mineral Metabolism dr that taking a high dose of D, would be more detrimental for me. Of course all drs have their own opinions, but I'm wondering if you D regimen could make the Ca worse.
I also have low D 25 (8.8) so I wanted to take a high dose of D, but they won't let me do it. I was also told that if your PTH is *within* the ref range it's considered normal. It isn't until your PTH goes above/below the ref range that they consider it to be a problem. I would ask your dr if he/she thinks that high dose D raises your Ca? Is your urinary Ca normal, the 24 hour urine test?
I've been tested for all the things you mentioned and don't have any of those contributing med probs, so they have never figured it out. Have you thought of getting a second opinion?
Let us know what you find out, I see that your Ca (ionized) is back to normal, but keep an eye on it. Mine did that 2-3 times over 2 years, but my ionized Ca always went back to a slightly elevated score. If you are having the tetany (muscle twitching/spasms) I would look for another dr if your insurance will let you.
My PTH is normal-although low (16) but they say it has to be above or below the range for a hyperparathyroid dx. Parathyroid.com may disagree with this, but I can't find any dr, and I've asked a lot of them, if you could have a normal PTH and high Ca and still get a hyperpara dx, and they all say no.
I would love to know if you get this figured out, I know I've talked to you before and am sorry I missed this post, because I wondered what had happened if anything to resolve your situation. I too have normal total Ca and slightly elevated ionized Ca, almost everytime it's drawn. Mine has never gone above 5.9, and I see your test was one of those with a different ref range, than the one I'm used to seeing. I had several of the type you did with that range, and they were the same thing, just slightly elevated.
Good Luck and keep us updated, even if some of us miss a few posts
I had mild high calcium, almost non-existent Vit D levels, and normal PTH. It was a parathyroid tumour.
Apparently about 15-20% of people who are hyperpara present with normal PTH, and another 3-5% present with normocalcaemia and high PTH. Most doctors simply don't see enough of it to make the diagnosis when you don't have the 'classic' labs - simultaneous high calcium and high PTH. I was only the third hyperpara patient my doctor had seen in 16 years of practise, and the other two had classic labs, which is the thing that delayed my diagnosis.
I had surgery about a week and a half ago to have the adenoma removed. Not exactly feeling like a new person or anything, but some symptoms have resolved.
Just FYI.
Last edited by lenormandista; 03-28-2008 at 05:23 PM.
Congratulations Lenormandista on finally getting the diagnosis nailed and having the surgery. I hope you feel better soon. I have the same symptoms as Mmee. I also have serum calcium @10.3, ionized calcium@1.35 and PTH @27. My doctor says there is NO way I have hyperparathyroidism because my PTH is normal. He has put me on 50,000IU Vitamin D as my level has hovered in the 19-21 mark. (It will probably just raise my calcium level higher) I have 11 of the 18 symptoms for HyperparaT the worst being the bone pain in the hips! I have emailed Dr. Norman but not sure if I will get a response. My ultrasound and CT scan of the neck did not mention adenomas, in fact, it didn't mention parathyroids at all. I feel as if I am a dog chasing my own tail but rapidly running out of breath! I found a great doctor here who does MIRP but can't get in to her without a referral! I see my doctor has requested the calcium to be checked again before my next appointment but that isn't for another 2 months! Two more months of this seems like a lifetime! Sorry to vent but I feel exasperated! Hoppy
Hi Lenor and Hopalong: Lenor I really hope the surgery resolves your problems and you feel better soon. How long did it take, and how did you convince anyone to check the parathyroid with normal PTH? The dr that I go to for osteo is in a hospital that has the mirp, but I don't think I could talk her into referring me to that dept. I'll give it a try though, since no one can figure this out.
The only symptoms I have, which I didn't really think were related, are excruciating bone pain, but *only* when I lie, or kneel on a hard surface. I may have other symptoms, but have always related them to other things. I have other types of pain, but the bone pain comes from applying pressure to the bone. I once mentioned to my dr that I met someone that had a parathyroid adenoma with normal PTH and she was flabergasted and thought I must have misunderstood. I didn't actually meet anyone, but I did talk to one of you who had this situation and that was the person I was referring to.
Also thanks for the info... Let us know how you do now that the surgery has been done. Where did you have the surgery done? You don't have to mention any name if you don't want to but the state would help.
Hopalong: I hope you can get into Dr Norman's or the other place with the mirp. Why is this such a difficult thing to dx? I was told that if you don't specifically request a parathyroid scan you won't get one. Where I live they don't even do them, just thyroid, and was told by a tech it's because the imaging is harder to do and they don't have the equipment. Good luck to you as well and I hope you and your dr figure this out.
My doctor thought it was the high dose supplements that raised my ionized Ca levels, but she thought it was unusual that it happened. My PTH levels have always been low normal as well as my serum calcium levels, so hyperparathyroidism has been ruled out. I'll mention it to my endo., but she'll
probably think I'm a hypochondriac as I've already requested so many other tests. I'm due for another blood draw in a week so we'll see how it goes. ARe your serum calciums levels high as well?
I can tell when my Vitamin D levels are low, because my legs will start to feel achy. I also have occasional numbness and muscle spasms, but I believe it's associated with a neck injury I had in my twenties.
I, too, had PTH and calcium levels within normal range. The only time they were out of range were at the time of diagnosis, which was almost two years ago. I was told by my endo I had a very unusual case of hyperparathyroid disease because of my normal lab results. In my case, my lab results were truly weird, because during surgery it was discoverd that my parathyroid tumor was cancerous not benign, as expected. Fortunately, the cancer was contained to the tumor and didn't spread to adjacent areas. (I had my thymus, lymphatic tissue, five lymph nodes and half my thyroid removed during surgery and checked for cancer.)
I had problems with tingling the first week and half after surgery...even after taking 4000mg of calcium a day. I would eat two delicious Tums when I tingled and within minutes the tingling would stop. It is about three weeks since my surgery, and I am taking 1260 mg of calcium a day and all is well.
I felt great after my surgery. My throat didn't hurt at all. In fact, I ate peanuts and cashews about three hours after my surgery. I didn't lose any part of my voice at all, either. By last Tuesday, two weeks after my surgery, I had full motion of my head and neck. If it wasn't for the two inch line at the bottom of my neck, you wouldn't know I had surgery. I didn't feel any symptoms of hyperpara, so I felt as good as I did going in as I did coming out of surgery.
GirlysoGroovy - If you had normal labs, how did they determine you had a parathyroid turmor?
lenormandista - I'm curious as to what your PTH and calcium levels were? You mention they were in the normal range. Were they high normal, low normal, smack in the middle? I think my doctor is ruling out hyperparathyroidism because when my ionized calciums levels were elevated, my PTH levels eventually dropped to a low level which I'm assuming you wouldn't see if your parathyroids were not functioning correctly.
My doctor thought it was the high dose supplements that raised my ionized Ca levels, but she thought it was unusual that it happened. My PTH levels have always been low normal as well as my serum calcium levels, so hyperparathyroidism has been ruled out. I'll mention it to my endo., but she'll
probably think I'm a hypochondriac as I've already requested so many other tests. I'm due for another blood draw in a week so we'll see how it goes. ARe your serum calciums levels high as well?
I can tell when my Vitamin D levels are low, because my legs will start to feel achy. I also have occasional numbness and muscle spasms, but I believe it's associated with a neck injury I had in my twenties.
Hi kkl: I don't think I can tell when my D is low, but apparently its been really low for a long time. My serum (total) Ca is normal (10.4), and it's the ionized that's alway slightly elevated. I have pain in my legs, neck, back, hips, but I also have problems with my bone in those areas to explain it, like arthritis, DDD, stenosis etc etc.
Let me know what you find out. For know I'm just taking 2000 IU's of D, since the dr won't put me on a high dose. She's more afraid of what *could* happen if my Ca went any higher. I am on Forteo which raises Ca and D125, but also lowers D25, so that may play a role in this. However my Ca was high "before" I started the Forteo and I decided to take it anyway. I'll be done with it at the end of June.
GirlySoGroovy - Parathyroid cancer is really rare, and I am so glad they caught it and that you're okay. I had surgery about a week and a half ago, the worst bit was that I had a reaction to the anaesthesia, but I always do. One of my friends pointed out that it might also have been a bit of a purge of some of the calcium ick that's been in my body over the past five years or so - that's approximately how long this has been going on. Makes as much sense as anything.
I did get immediate relief from the crushing bone pain. I still have some pain, because I have fibromyalgia and RA, but after I went hyperpara, I had such bad pain in my hip it would routinely wake me up in the middle of the night and I'd have to take morphine and try to keep from screaming til it kicked in. Then it'd do it again in the morning. But even the night after the surgery, that went away and hasn't been back. My eyesight is also getting better (I can read books again!), and I've lost 7 lbs. I'm one of those weird people who gained weight even though I couldn't eat anything because I was always ill at the stomach. That hasn't completely resolved, but it's got some better, and maybe I'll finally get back to my normal weight. Still having cognitive difficulties, but I've heard those are the last to go. I also went mildly diabetic, maybe because of the hyperpara or the weight gain, but that's controllable by diet, and with luck not to be heard from again. I am not 100%, but I'm doing way better than I was before the surgery. Taking megadoses of calcium, too, because I also got osteoporosis.
Kkl - my serum calciums were usually around 10.5 or so (the high being I think 10.8 and the low being 9.7 - 9.8 - it did bounce sometimes), my ionised calciums were usually around 1.42, and my PTH bounced from the low-20s to 40. But but but - even when it was around 34, the lab flagged it as 'suspicious but inconclusive'. I do know that the higher end of the PTH scale only applies as you get older - it's not normal to have PTH of 65 if you're in your 20s - mid-50s. And my Vit D was so low it wasn't even registering.
How I got diagnosed: I sacked my endocrinologist (who was an idiot, I hate to say, but at least she ruled out everything else that could possibly cause high calcium and quite a few things more), did a lot of research, and got my doctor to think it through with me. If you've got hypercalcaemia, your parathyroids should turn OFF. IOW, unless you've got a PTH of 5 - 10 when you're hypercalcaemic, you've probably got an adenoma. And here I was with all the symptoms except hypertension, and 'normal' PTH. The osteoporosis sealed the deal, since I'm not near old enough to have that.
The scans, both at home and in Florida where I had the surgery done couldn't localise the tumour, but it was in there. Small, and hiding, but even a little tumour can make you very very sick.
I'm very glad I had it done, even though it was scary to go through. I've got a good prognosis because it was a small tumour (maybe about the size of a pencil eraser), but it had been in there causing havoc for five years. In some weird way I may have been lucky that I was symptomatic, even if I was miserable. I don't like to think what it would've been like had it gone another five years. And most of that time was spent with my endo going on wild goose chases. Had that not been the case then maybe it could all have been sorted sooner - but nobody ever sees parathyroid disease, so if you don't have absolutely classic labs they're reticent to diagnose, and given they don't have MIRP in my country, even more reticent to suggest surgery.
Last edited by lenormandista; 03-29-2008 at 03:05 PM.
lenormandista,
I am so glad that you are feeling some better. I hope that each day gets better and better.
I wanted to let you know that I got my calcium levels for the past year, and they all have been within normal range limits (except for one time at 10.9), but they have all been 10.0 and over (except for one time at 9.8), so I am hoping that I can be retested by my doctor on Wednesday.
I hope thate each day brings you better and better health.
I had an abnormal calcium level that was a hair above normal. My doctor checked it again and my PTH level to see if it was hyperpara. The PTH level came back at 105, I think. All my levels were normal after that point. When my PTH came up high, I was sent to an endo ... a now fired endo... who found it with an ultrasound, so we knew it was there, even when my numbers were coming up in range. My endo surgeon found it very easily with her ultrasound machine, too. I would not want someone opening up my neck and digging around for it. so I am very grateful mine was an easy find. My surgeon told me she once found a parathyroid adenoma behind someone's heart! Ouch.
I am so happy you are feeling better! I have no idea what bone pain feels like, since I thankfully didn't experience it. It sounds awful! I didn't have any symptoms. I didn't lose weight, either. I felt good before surgery, and I feel good since surgery. I consider myself quite lucky. I have read too many unfortuante posts from people who are having trouble finding out what is wrong with them.
All around I am very grateful for my primary care physician. She diagnosed it without blinking an eye and sent me to a great surgeon who knew what she was doing. My PCP also sent me to the only endo in our area, whom I have discovered is an awful doctor, but I forgive her for that. She has never been a patient of his. But she was in luck. I have had NO problem sharing my experience. :-) It has been THREE weeks since I have had surgery to have the unexpected cancerous tumor removed...and I haven't heard a peep from him! I mean, he hasn't called and told me to come in and have my calcium levels checked! Keep in mind, I also had half of my thyroid removed, so I am in need of a thyroid level check. But has his office called? No. He knows all this but has never called with a follow-up/post-op appointment. I figure if my PCP found the tumor the first time, she will be able to find it the second. She also has the ability to monitor thyroid levels, so I am sticking with her.
Hi All: This post is mainly for those trying to get a dx on hyperpara. I haven't been able to find anyone in my area that will consider a hyperpara dx without the extremely elevated PTH to go along with it. After reading all of your histories I noticed a link on this board for a minimally invasive parathyroid, thyroid, head and neck cancer center in CA. I don't know if any of you are near CA or if any of the info will help, but check out the link on this board that says minimally invasive parathyroid surgery. The site is quite large and list all the things they treat and gives bios on all the surgeons there.
Read it and see if it can help anyone. I feel a little better knowing that there is a center near me that could possibly help with a dx or treatment. Read the page that has diagnoses as the title of one paragraph and see what you think about the comment on slightly elevated calcium with normal or non elevated PTH. This confirms what some of you have been saying about not having the classical labs.
I've only seen the ad when you are on the opening page of this thread. It may be in other places here, but that's where I saw it. You may have to wait for it to appear since I think these ads circulate throughout the day. I believe the name of the facility was AdvancedOncology, in Beverly Hills CA, unfortunately the ad isn't appearing right now so I can't tell you exactly what it says. I found the many pages very interesting, and liked that I could check the educational background of each dr there.
DesertBloom,
Thanks so much for your post. Do you happen to have a website with that? I could not find the ad and I tried looking it up myself on the internet and I could not find it. If you have a website could you post it so that we could see about the calcium levels and symptoms that they list?
Thanks so much.
mmee
hopalong,
I for some reason am having trouble with my 'instant email notifications' by healthboards coming through to my email. Only some are coming through, so I will have to start going back to the board to check for myself. Sorry about that. I will go back and check your message now.
mmee
) I have 11 of the 18 symptoms for HyperparaT the worst being the bone pain in the hips! I have emailed Dr. Norman but not sure if I will get a response. My ultrasound and CT scan of the neck did not mention adenomas, in fact, it didn't mention parathyroids at all. I feel as if I am a dog chasing my own tail but rapidly running out of breath! I found a great doctor here who does MIRP but can't get in to her without a referral! I see my doctor has requested the calcium to be checked again before my next appointment but that isn't for another 2 months! Two more months of this seems like a lifetime! Sorry to vent but I feel exasperated! Hoppy
