After the slam above about mentioning Dr. Norman, the board seems to have gotten quiet...If not the Norman Clinic at Tampa General Hospital (parathyroid ******* website), then who are we to go to for real advice on high calcium? All the legitimate sites refer back to him. His name is all over most of the major research in the field. He does more of these than anyone else. He wins normal looking community awards when you Google him. Why hate on that?
Mine shot up to 10.8 too and with it I felt rotten. Previous values were in the low 10's - not normal for a guy in his early 40's. I have fatigue, GERD, muscle aches and pains, bone pain when I sleep, moods, etc., all of which seem to point to parathyroid problems. I am also hypothyroid, but managing that on compounded (pig) thyroid.
So, I am simply waiting for a lab test to catch me in the upper 10's again so I can apply to be a patient at the Norman Clinic. I hate waiting, but it will cost me $1650 to find out for sure (for them to perform a complete diagnosis using my full medical records), so I don't want to apply until I have more than just one 10.8 reading. My PTH (which took me begging for the test with my N.P.) was in the 30's too. Frustrating. I know one person who had parathyroid surgery, and he is night and day different (better). Don't know where he had it done (U of M or Mayo).
The nurse at the Norman Clinic will answer questions for you via email. They are very nice.
Hope you get your situation figured out, Brass, good luck!
I too am super confused! I have high serum calcium of 10.6, but high normal sodium and chloride. I know I'm not dehydrated! No signs, plus...I do have Sjogrens and I drink ALL day long!!! This is a recent discovery by my Rhuemy. Now my endo sees it too. My PTH tests came back 1st 25, 2nd 36. So extremely confused!!!!
Thank you Lori, I hope you are well too =).
I apologize to danie.
Be well everyone!
I love you both! I have yet to meet or hear of a Dr. dealing with thyroids or parathyroids that I would consider good enough to promote unfortunately lol. I wish I had the confidence in feeling one was actually right! I hope you both feel better and you are always in my prayers.
Hoping to get some answers for all of us. Will get in touch with you soon on PM. I am sorry you are having the pain and swelling too. Hugs backatcha! sass
I agree with Sass about Dani she also has been so kind and wonderful to me too. Just wanted to say thanks to her. I am sorry Sass that you are having so much pain. I also am having terrible joint pain and swelling too. I too am confused if it is the low vit D or what the heck is going on. I hope you can get some answers and I would love hear from you if you do find out anything. Thyroid issues and all that goes along with it is so exhausting and frustrating. Hugs to you both!
Yes, Danie and I have been friends for quite some time. She and I have been a support system for each other and she is only offering another outlet of hope for me. I know that I have seen another posting previoulsy of someone promoting Dr Norman. She is NOT one of them. I have actually been studying and researching some of his work prior to Danie ever mentioning him. I find it quite interesting. I also have been seeing 4 specialists concerning this, not including my personal MD. In 2 of their opinions I can ignore my abnormal labs and put it on the back burner. I did this when I had a pituitary tumor and it lead to almost devastating results. I am not ignoring something with my health again. The other two don't know which direction to go in. Lip biopsies, Gallium Scans, Chest X-Rays, More Bloodwork, Wait and See, Brain MRI, Vitamin D supplements, Drink more milk, get more sun, Do Not take Calcium, Avoid Calcium foods, Ultrasound, No Ultrasound, Systambi Scan. I am seeing a top Endocrinologist in Houston, TX. He has a mixed opinion. Don't think my calcium is high enough to cause me the problems I am experiencing! So as you can tell I am more than a little confused. What would you do? At least they all agreed that I should not take any Calcium ever, My dentist told me that when I had bone growing into my mouth and breaking off!
I appreciate your concern for me and that you would think someone could be promoting a commercial. I have read many of patients stories of Dr Norman's and if I had that much success and relief I would probably be promoting him as well. Unfortunely I do not know that I can afford him, but am seriously considering to try.
But you are wrong about Danie! She is a wonderful and kind person that I am proud to call friend.
If you are referring to me, you are grossly mistaken. I am just offering Sass the email address as I was told to contact him too. He did reply to me telling me that I need more testing. I am friends with Sass and am just offering her a path to go since she is suffering so much. It's free, why not try and see what his opinion is. I have been friends with Sass, and it has nothing to do with the parathyroid and promotions as I actually have problems with my thyroid as well. When you research parathyroids however, most of the info comes from Dr. Norman. If you read any of my previous posts you would see that I have mentioned that my endo's disagree with Dr. Norman, and I do not know who is right. I do know that a calcium level of 10.8 is HIGH, and I'd love to see my friend get help. If that is wrong, then I guess I am wrong.
There are people here that just join to promote Dr.Normans web site. Please stop it.
I had high calcium and PTH for many years. Had the systambi scan and nothing showed up. Years later I decided to seek out an endrocronologist and he got my calcium AND PTH in check!
My advise is to seek out a very good endrocronologist and let them give you the tests you need and be guided by them. Then, get a 2nd or even a 3rd opinion.
Be well!
Sass....10.8 is really high for your calcium. You can email Dr. Norman and he will tell you for free if he thinks you have a parathyroid problem. According to him your calcium should never be that high, if it is even once, you have hyperparathyroidism.
http://www.parathyroid.com/low-vitamin-d.htm
Go to this site and read, This is interesting reading for anyone experiencing hig calcium levels or low vitamin d levels. Let me know what ya'll think. sass
My first Calcium was 10.8 and the most recent was 10.0 , The first was a little high and the second was the highes number for normal. So there could be some indication that I am at least running high normal?. My vitamin D was at 30 with 32 being the starting for normal range and have not received my second yet. So it is just barely low. My sodium the first was in the low level but the second was in low normal range. So I am confused. I see my endrocrinologist Tuesday as well as my Rheumy and a new ENT for the lip biopsy consult. So far my results for the Sjogrens was negative, but the Rheumy prepared me that it can show negative but still have it as it is a difficult disease to get accurate results on. Not sure if the lip biopsy is being done just for Sjogrens/Lupus or if it is also being done for the Parotid Gland Dysfunction. I have found out that there are numerous diseases other than tumors and stones that can be involved in the Parotid Gland. I am anxious to discover what is causing all these mysterious afflicitons. My life is becoming more and more miserable with pain and swelling. Working is becoming unbearable. Don't know which way to turn. Must Work to continue insurance and need the income. Wishing for an answer and want someone to say "This is what you have to do"!!!! sass
I often wonder the same thing. My pth and calcium were both borderline high at the same time. Neither was over the limit but both were in the upper edge of normal at the same time. My endos swear that this cannot be from hyperparathyroidism. Ironically a few months before my problems started my calcium was 8.5 (which made sense from a severe vitamin D deficiency) then it shot up to 10. I heard calcium is not supposed to fluctuate like that. I'd love to take D, but I can't. It ALWAYS raises my heart rate, but maybe it makes me feel hyperthyroid or something since my thyroid is a mess. I'm meeting with a surgeon so I'm gonna make him look at my parathyroids when he removes my thyroid. I don't want 2 surgeries!
Sassy I hope they figure out something in your test!
Hi Ladies,
I may have mentioned this before, but your PTH and calcium should NEVER be elevated (or high normal) at the same time. They should either be at opposite ends (one high, one low) or close to each other in the middle. There aren't too many things that cause hyperparathyroidism but one is a tumor on a parathyroid gland (primary HPT) and pituitary issues (secondary HPT.) In secondary HPT, it is often caused by MENS which also can involve other endocrine organs (pancreas, thyroid, etc.) The symptoms of HPT are the same regardless -that of hypercalcemia.
Vitamin D is the precurser to calciferol (sp?) which binds with vitamin k2 and is absorbed by the bones to add to their calcium stores. All the parathyroid hormone does (PTH) is control blood calcium levels. The more PTH in your system, the more calcium is released from your bones. If there is a parathyroid tumor, the "shutoff switch" for calcium sensing is desensitized and the parathyroids keep pumping out the hormone, driving the calcium level up. I can't help but wonder if (or can?) your body is deliberately keeping the vitamin D levels low trying to keep calcium production down, or if they are low because of the calcium demand...Hmmm...Chicken or the egg...~MM
Oh yeah oddly enough, my sodium level was low too.... hmmmm.
What was your calcium level? I am having the same problem, only my calcium isn't that high. If it's a lot over 10 though, Dr. Norman would say you definitely have a parathyroid problem. Have you checked out his website? It is very helpful although there is conflicting info. He doesn't believe vitamin D deficiency can cause higher calcium levels, but my docs have told me it does. I don't really know who is right, BUT every time I take vitamin D my heart races uncontrollably. I hope you start to feel better.
Have u heard from ur doc. yet? Please keep us updated....
Good to hear you're feeling better and the pain's subsided : )
Thank you, I am feeling better. Still do not know what the pain is about but is has subsided quit a bit. Waiting on urinaylisis to come back.
Hi,
You could have a kidney stone that is trying to work its way loose or is partially blocking the top of the ureter. If so, you may be experiencing hydronephrosis (kidney becomes engorged and "backed up" because of urine unable to get down the ureter) which can progress to a kidney infection. The other kidney compensates by working harder so your body is not overwhelmed by wastes backing up. Do you have a maddening urge to urinate? (A sure sign of a kidney stone.)
When is your next Dr appt? If it is not soon, (like before the weekend) I'd recommend getting in and telling them you may have a kidney stone. -It may be something less, but this can be quite serious. Also, if you can't get in right away, an over-the-counter medicine called pyridium (brand name Urostat) works wonderfully to numb the urinary tract. Cranberry juice (the real stuff) or capsules help combat urinary tract infections. The edema you are experiencing is actually your body's way of trying to trap water to keep itself hydrated. Drink more water/fluids, keep caffeine/sugar to a minimum, and don't cut back salt right now. Your sodium is already low. Your kidneys are desperately trying to keep your calcium levels stable and are working overtime by trying to "rinse" it out of your system. Unfortunately, the other components go with it too.
Monitor yourself for fever and if you suddenly begin vomiting and your pain worsens -you have a kidney stone on the move. It feels like a huge constant ache with waves of pain in your flank that sometimes radiates into your groin.The pain I experienced from mine was horrible. I experienced 45 hours of labor and had a natural childbirth -and the last stone was worse than that. Nothing to be messed with -go to the ER if this happens!
One other thing that hypercalcemic/hyperparathyroid patients sometimes experience is bowel blockages. The calcium slows the gut motility down, creating a constant bloating/constipation (which can also cause edema in your legs because the bowel material puts pressure on the blood vessels returning from the legs.) Anything you can do to keep your "elimination" more constant will make you feel better.
Geeze, I didn't mean to ramble! I hope this info is helpful. If you haven't, look up Parathyroid.com to research the possibility of HPT symptoms. Good luck and I hope you feel better soon...:) ~MM
Oh wow, I love V-8..a suggestion that finally I will gladly take. Not a big water fan, I mean I like water okay, just not my fav. And yes my urine for the sample was almost clear, maybe that is why. And I always crave salt and sweets. I don't eat a lot of chips but I am guilty of oversalting my food. I have to quit that as I am having some edema problems with my feet and hands.
I am anxious to get the results. As always, my biggest fear, is to hear them say...okay everything looks normal!! I hate that! Seems silly, but I Know everything isn't normal.
Could the hurting I started having about 6 days ago in both sides and now in my right lower/mid quandrant of my back (just below rib line) be associated with any of that?
Anybody?? -sass-
I almost forgot...Your high calcium/low sodium and chloride levels may be low from frequent urination. As your calcium levels rise, the body gets rid of it by urinating it out -and other things like sodium, potassium, and chlorides go with it. I craved potato products and popped corn (bad!) when I was going though this, and now I know why. Potatoes (especially french fries and chips) and popped corn are high in potassium and sodium (especially when you load them with salt or butter!) If you can, drink V-8 juice -it has even better nutrients and also has fiber and liquid that will keep your bowels moving! :) ~MM
Hi Ladies,
I am post-parathyroid (surgery in 2006) and I can say I felt like a new person shortly after surgery. The symptoms from the hypercalcemia were horrible. Headaches, frequent urination, heartburn, "brain fog", muscle and joint pains, constipation, kidney stones (7 in two years!) and the female hormonal upsets were enough to make me insane! -I even had to have a fit in my Dr's office because she didn't want to authorize a PTH test when my blood tests clearly showed escalating calcium levels! I'm really glad that your Drs are paying attention. Good luck to both of you, and may this be an easy fix. (((HUGZ))))~MM