From what you say, you almost certainly have a parathyroid tumor and hyperparathyroidism.
It is never normal to have a high calcium… and, people with NORMAL parathyroid glands have calcium levels that are EXTREMELY constant… no variability.
If you have calcium levels that jump around and are occasionally high, then you have a parathyroid tumor. It is as simple as that. Very classic.
Let me know if you want our help… you need the tumor removed. You need no other tests or scans.
What does everyone think? I emailed him with whats been going on, I just feel weird cause Im talking to a doctor by email who specializes in parathyroid disease. Want to make sure this is accurate for him to tell me.
This is my understanding of this disease too. I just found out on Monday that I have a high calcium reading, so I went back last night and had more blood taken to examine ca again, ionized ca, and pth.
Do you have this condition? If so, what are your symtpoms?
Thanks,
That's exactly how I found my thyroid surgeon, by computer "word of mouth" and it worked out really well. I didn't see him for a personal visit until a day before my surgery. We worked most of the stuff out over the phone beforehand. I have to say I had none of the possible problems that can happen after thyroid surgery. When you find a surgeon that concentrates on only one type of surgery, I feel that they do what they do well. Of course, hearing by word of mouth gives first hand accounts too.
hi carol1207,
I actually have not been diagnosed yet with hyperparathyroid. I am still working on it. I have been sick for 13 1/2 months and on Monday, I finally got a referral to an endocrinologist for this calcium.
How did you get diagnosed? Were you having symptoms? What was your calcium and pth levels, if you don't mind me asking and did they bounce around a little bit?
Sorry for all of the questions.
Thanks,
mmee
Hi Mmee,
During a routine (and my first) bone density scan, they found osteoporosis in Jan 2007. All the doctor did was prescribe Actenol or Boniva. I didn't want to resort to pharma's so started searching for natural methods to build bone after age 50. Stumbled into Dr. Norman's site and found that I matched many of the symptoms. Convinced my OB to run a calcium and PTH. They turned up high, Cal - 10.7 and PTH - 73.1. She ran a second series two weeks later, Cal - 10.5 PTH - 88.3. She referred me to an endo. He's done three labs, Cal - 10.3, 10.3, 10.4 and PTH - 60.3, 74.2, 82.7. Last lab March 08. Negative sestamibi scan, but a thyroid ultrasound turn up a possible tumor, maybe. He now can only recommend a surgeon otherwise just continued monitoring while I lose more bone. As of yesterday, all my medical records are on their way to Dr. Norman's office and they will review and set up a consult over the phone to see if I am a candidate. I've been feeling terrible for over two years now. Migraines are the worst. Back and hips ache all the time. I've always been in good health, active lifestyle. I hope I can become the old me again. Please feel free to ask all the questions you need to. I had a good endocrinologist who was willing to listen and go down this path. Have you come across anyone who has had surgery by Dr. Norman? Thanks!
Carol
Quote:
Originally Posted by mmee
hi carol1207,
I actually have not been diagnosed yet with hyperparathyroid. I am still working on it. I have been sick for 13 1/2 months and on Monday, I finally got a referral to an endocrinologist for this calcium.
How did you get diagnosed? Were you having symptoms? What was your calcium and pth levels, if you don't mind me asking and did they bounce around a little bit?
Sorry for all of the questions.
Thanks,
mmee
That is how I feel too carol. It all started with me in Feb 2007 when I went to the emergency room for a rapid heart rate and from there it is has just been down hill. I have been diagnosed with a few things, but I am not feeling any better.
Do you have a cardiac arrythmia or high blood pressure? I have a cardiac arrythmia and strange blood pressure, like I get readings like 114/94, so the top number looks low and the bottom looks high. Then I have had 140's/60's. So, the top looks high and the bottom low.
I have severe hip pain and my right hip is actually shorter than the other now, I never had a bone density scan because I am 32 and they will not offer it to me. I have alot of back problems and bulging disks. I also have myofascial pain and hypoadrenalism. I do get headaches at times too. I also have tmj.
I am so confused if why I am feeling bad is because of something that I already know that I have or if it is something else (like hyperparathyroid). My last calcium was 11.0 and the doctor would not run a pth because he said that it was not high enough.
I am so confused as to what to do next. I did get an appointment at the endo's but it is not until June 10th-uhuh So, I don't know what to do. I am hoping that I can feel good again too, I know exactly what you mean.
Keep me updated on yourself and if you have any questions to ask me please do so. Also- I do not know of anyone that has had surgery at Dr. Norman's personally but I have read some wonderful things on healthboards about him.
Hello, I'm new Does anyone know if Calcium serum levels of 10.0, 10.2 and 10.1 are high enough to indicate hyperparathyroidism? (One blood test was 11.6 which I know is high). Would a scan be needed to confirm this?
hi Dravadear39,
Are your levels jumping around from the 10's then into the 11's then back to 10's. According to parathyroid.com, it is high enough. Have you had your pth checked yet to see where it is?
That is exactly what is happening to me, my calcium was in the 10's then went to 10.9 then to 11.0, but I have not had a recent pth, because the doctors in my area are telling me that this level is just not high enough, but I have since learned otherwise.
Hi Mmee, thanks for responding. It appears that my pth levels are normal. My first test was 11.6, then three others after that, in the low 10's. Docs are saying these "high normal" values aren't high enough for hyperparathyroidism. I am also having my T3 thyroid level adjusted. I'm hoping that one of these two things is causing my treatment-resistant depression.
Kay
hi, I also wanted to ask anyone with hyperparathryoid or getting the testing done, is it best to fast before the test or does it really not matter if you fast or not, if someone could let me know I would appreciate it.
I asked my previous physcian, but she really never gave me an answer.
hi, Dravadear39,
Sounds like we are in the same boat. I am being told the exact same thing. When your calcium was 11.6 was your pth in the 'normal' range? If so, from what I am reading on parathyroid.com, that could possibly indicate a hyperparathyroid problem. Because if your parathyroid was working correctly at a calcium of 11.6 then the pth should be near zero.
What are your symptoms, if you don't mind me asking? Do you have high blood pressure or a cardiac arrythmia (rapid pulse, pac, pvc, skipped beats)?
My pth was 42 pg/ml which was considered normal. My only symptom is depression which only gets better for short runs of time with antidepressants. Low blood pressure, great heart health and overall health.
Thanks, Dravadear39
hi Dravadear39,
My understanding of hyperparathyroid is that if your calcium is 11.6 and your pth is 42, that is a high pth, because your hormone should be shutting down at 11.6 going near 0.
I would definately have that looked into more. I am looking into mine also, because mine jumps all around, the calcium. I have only ever had the pth tested once and it was 36 at the time.
Do you have thyroid problems too? I am having a thyroid upscan tomorrow to see if it is possibly my thyroid. Do you have hyper or hypo?
I had a DXA scan done yesterday. If my bones are good, I will be less worried about the hPTH. If there is osteopenia or osteoporosis, I will have more ammunition. They were only going to do the spine and hip but I talked to the tech and told her my Vitamin D is below range and my calcium came back again at 10.3. She said she would do the radial (wrist) scan as well as that is usually what they check along with the others when checking for hPTH. I'll let you know how it comes out when I get the report.
Dravadear39, Welcome! You should definitely look into your levels a little more. Hoppy
Last edited by hopalong_too; 04-16-2008 at 04:54 PM.
Good to hear from you hoppy,
I hope that your scan can really show you something, either one way or another. How are you feeling? The same, better, or worse?
It is like a nightmare talking to these doctors in my area about calcium. Everything they say totally contradicts Dr. Norman and other doctors that specialize in the field.
No, you don't need to fast for PTH and/or calcium level tests. Or bone scans. But if you're taking calcium or vitamin D, you might want to stop that a few days before the tests - though if you're hypercalcaemic you shouldn't be taking either of those. Ugh.
Still hanging in there, and having good days and bad days, going home next week.
And for whoever asked (sorry, I'm typing from memory here), Jim Norman is a really good surgeon and he's kind. You won't spend a lot of time talking with him, probably, but he'll let you know what's going on. I'm glad I had the surgery done in Florida, because I don't think anyone else would have found my tumour (didn't show up on the scan, it was tiny and hiding, but it wreaked havoc with me for five years).
FYI, my calcium was usually in the low-to-mid tens, and my PTH was always in the 'allegedly normal' range, too - that's what delayed my diagnosis for so long - everyone was waiting for a high PTH and a high calcium and it just didn't happen. But I had osteoporosis show up on my bone scan, so that kind of clinched the deal. My ionised calcium was always high, too, so that helped, but everyone was thrown by the 'normal' PTH.
IOW, 'normal' PTH is NOT normal if your calcium is high!
Lenormandista, Congratulations on your recovery! Beautiful Nova Scotia...is that right? I lived in Enfield for a while!
Do you remember what your calcium levels were? Ionized calcium? PTH?
My calcium levels are 10.3 almost consistently. Ionized calcium 1.35 (1.17-1.32)....Doctor said this is not reliable!! PTH is only 27. My doctor says no way to hPTH because many people have calcium level of 10.3. Maybe she is right??? I REALLY HOPE my DEXA scan shows SOMETHING because I need to feel better. I just am not ready to give up but have been told at my last visit that I am dwelling on this too much! My gut just says that they are not seeing something that is right there! What was your T score?
Thank you so much for all of your support! Hoppy
Last edited by hopalong_too; 04-17-2008 at 07:28 AM.
hi lenormandista,
Congratulations on your recovery. Keep us updated as how you are doing. I am glad that you were able to go to Dr. Norman, if I can ever get diagnosed with this, that is where I would like to go too.
hi Hoppy,
I would keep after them for the hyperparathyroid, because I doubt that your calcium would be 10.3 if there were not something going on.
I had my scan done for my thyroid today, so we will see if there is anything that comes out of this, which I doubt.
I also am getting retested for the calcium, pth, and ionized calcium, so we will see.
I am so desperate to find out what is wrong with me.-uhuhuh
Does anyone know if Calcium serum levels of 10.0, 10.2 and 10.1 are high enough to indicate hyperparathyroidism? (One blood test was 11.6 which I know is high). Would a scan be needed to confirm this?
