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Old 03-17-2008, 06:25 PM   #1
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Please help! Any one with a parathyroid condition or symptoms!

I finally got my results about my parathyroid testing today from my doctor. Here are the results and testing dates.
Calcium level:
August 2007 - 10.1
2 weeks ago - 10.9
1 week ago - 9.8 calcium, ionized calcium - 5.5 and pth 36

She told me that I did not have parathryoid disease because my numbers fell back down. But I have been doing alot of research on parathyroid.com by Dr. Norman and he said that that is completely normal for hyperparathyroid disease. Plus I have 2 relatives that have this disease and it is supposedly pretty rare. My aunt on my dad's side had the disease and my great-aunt on my mom's side. And said that she would test me again in 3 to 4 months.
So, I decided to call an independent lab myself, now I have to pay for it, the insurance company will not cover it. But I am having my calcium and ionized calcium retested.

Has anyone else ever ran into this problem or known anyone who ran into this problem? Please share any story about having symptoms of parathyroidism. Any help or advice would be greatly appreciated!!!

Thanks so much.

Last edited by mmee; 03-18-2008 at 06:49 AM. Reason: made a number error

 
Old 03-17-2008, 11:57 PM   #2
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Re: Please help! Any one with a parathyroid condition or symptoms!

Mmee, The normal result for ionized calcium is either 4.4-5.3mg/dl or 1.12-1.32mmol/l. I am not sure what reference range your test is. Do you know? 3.5 would be low for the mg/dl but extremely high for the mmol/L.

My PTH was 27 and my calcium was 10 and my ionized calcium was 1.35mmol/L (1,17-1.32). Converting that would be 5.4mg/dl (4.4-5.3).

I cannot answer your question unless you tell the measurement or the reference range. I am going through the same issues right now but I have an appointment this week. With hyperparathyroidism, the calcium fluctuates! I have also read that high ionized calcium with inappropriately normal PTH in the setting of low Vit D is diagnostic of primary hyperparathyroidism. PTH should not be normal with high calcium;it should be almost 0.

I will follow up after my appointment. Do you have bone and/or muscle pain? Hoppy

 
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Old 03-18-2008, 07:38 AM   #3
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Re: Please help! Any one with a parathyroid condition or symptoms!

Hi, hopolong,
Thanks so much for your post. I did make a mistake on the ionized calcium, I apologize. I fixed it, my level was 5.5. My doctor told me the outer limit of high was 5.6, so I was fine.-uhuh
She did not check my vitamin d level, so I am not sure on that.
Please advise. Sounds like we are both in the same boat on this parathyroid.

Thanks so much.

 
Old 03-18-2008, 07:45 AM   #4
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Re: Please help! Any one with a parathyroid condition or symptoms!

I forgot to say in the last post about bone and muscle pain. I have been diagnosed with myofascial pain syndrome, because I have so much muscle pain. I go to a clinical massage therapist every week or two just to try and take some of the edge off of the muscle pain. I also get strange nerve sensations too, I have been getting them for a year.
This is another weird thing, but about 4 years ago, I accidentally dropped a table on my leg, it was the top of a picnic table, very heavy. It still hurts and is slightly bruised. And sometimes that pain sends pain down into my ankle. I am 31 by the way, and I have never been checked for osteo or anything like that. Do you any symptoms like these?
Thanks so much. I hope that we can both find out what is going on with us.

 
Old 03-18-2008, 07:59 AM   #5
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Re: Please help! Any one with a parathyroid condition or symptoms!

Mmee, I go to a massage therapist once a week to try and relieve the pain as well. My therapist says he has never seen anyone get this much treatment and get worse, not better. My legs muscles are very hypertoned. I have a hard time crossing my legs and have such bad hip pain that I can't roll over in bed at night. I sleep with a heating pad. I have had Xrays, MRI, EMG and NCS on hips/thighs and all was normal. This hasn't deterred me as I KNOW the pain is there. I just don't know why. I bruise very easily and the bruise takes a very long time to go away.

Every lab has different reference ranges but that is still high (high normal you could call it!). You could ask for a repeat of the calcium test along with PTH and Vitamin D. Serum calcium fluctuates more than ionized calcium.

I go to the Endo today so I will let you know if I can get my points across and whether I (we....haha) are on the right track. I am going armed with paperwork from my researching but I will use honey....not vinegar as it tends to go farther. I'll let you know. Hoppy

Last edited by hopalong_too; 03-18-2008 at 08:01 AM.

 
Old 03-18-2008, 04:40 PM   #6
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Re: Please help! Any one with a parathyroid condition or symptoms!

Hi, hopolong,
I too do not really seem to be making much head way in the massage area. She always says how bad everything is. They told me it was myofascial pain syndrome, but where did that come from? I also have the hip problem too. It is hard for me to lay on either side, but the ride side seems to be worse. I actually went to a reflexologist and she could tell that both of my hips were really bad. She also said that my left shoulder is actually displaced and that my tmj is so bad that the bones in my face are actually misaligned. I too have had a ton of x-rays. I have had cat scans of several parts of my body and had chest x-rays and I have had a brain mri, they were looking for ms. But nothing. Now I do have an elevated ANA level and now this calcium goes up and down. And then I have the hypoadrenalism, it showed I had a low cortisol and low dhea.
How did you make out at the endo today? I wish you lots of luck!!!!!

 
Old 03-18-2008, 10:10 PM   #7
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Re: Please help! Any one with a parathyroid condition or symptoms!

Well, I went for my appointment and the Endo didn't like the TSH level so he lowered me to 50mcg Synthroid and stay at 5mcg Cytomel. He said NO Synthroid for 4 days! He said some people are hyperT and some are HypoT and sometimes they have the same symptoms! He did spend time listening to me and asking how I felt etc. and explained how with positive antibodies the levels will fluctuate up and down. He said it may take a while to adjust the meds. He said no way to Hyperparathyroidism with the normal PTH. Would not even consider it. He said the ionized calcium is so outdated that they just don't bother asking for it anymore (it was me who requested it). I told him I had been reading a lot on the internet (Dr. Norman's site etc.) He said reading is good but don't believe everything you read. He put the code as Myositis (I looked it up). I am going for a CT of the neck tomorrow (at least if there is a parathyroid issue, it should show up) and I had loads more blood work done today for the sore bones/muscles (Chem panel, CK and ESR). I will get those results tomorrow. I actually broke down crying in the office. My blood pressure was elevated (140/90) and it has always been so low (105/60)and I gained more weight!!! My bones/muscles are SO sore! I will see what tomorrow brings. Hoppy

Last edited by hopalong_too; 03-19-2008 at 07:09 AM.

 
Old 03-19-2008, 09:35 AM   #8
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Re: Please help! Any one with a parathyroid condition or symptoms!

I feel so bad that he would not even consider the hyperparathryoid. My great aunt has had hyperthyroid for years and now just this year was also diagnosed with a parathyroid problem. She has actually been feeling bad with it for at least a year or more, but they finally just said that it was parathyroid related.
What is Myositis? Does that have to do with your muscles? I hope that your blood work comes back soon and hopefully that will help. Good luck with your cat scan too.
I went and had my other ionized calcium drawn today. I have decided to switch doctors (family doctors). I am calling to get an appointment with someone else today. I have never even been offered to go to an endo and I have checked to see if I can get into one without a doctor referral and they all say no. I also have this hypoadrenalism, and I want to see if I can maybe get into an endo to help with that because I don't really think that it has gotten any better either and I was diagnosed with it last year.
I hope that they can get your thyroid medication regulated too. That is terrible that it is not regulated yet. My blood pressure does that same thing, it will go high like that now. I was always low blood pressure, and now it goes high for no reason at all. My pulse has also majorly speeded up and then I get the palpitations too. Do you have a fast pulse at all? I take toprol when the pulse goes too fast, it helps some but not as much as I think that it should be helping.
Good luck and keep me posted. I will let you know as soon as my blood work comes back in and I will post it. Let me know how you make out with your blood work too and your cat scan.

 
Old 03-19-2008, 07:59 PM   #9
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Re: Please help! Any one with a parathyroid condition or symptoms!

Myositis is inflammation and degeneration of muscles. It appears that I am the picture of health! All of my blood tests came back in range...even the calcium. It was 10.3 (8.5-10.3). I'm sure the doctor will say this is great even though Dr. Norman agrees that a calcium level above 10 can cause someone to feel awful. I had the CT scan and I will update when I hear something.

No fast pulse. At least he said if nothing turns up, he will refer to to a rheumatologist. Hoppy

Last edited by hopalong_too; 03-19-2008 at 07:59 PM.

 
Old 03-19-2008, 10:16 PM   #10
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Re: Please help! Any one with a parathyroid condition or symptoms!

Don't ya just love how we are all the picture of health-hahaha
The Myositis sounds sort of like my myofascial pain. My muscles are all roped with these bands of fascia and toxins are getting stuck inside of them.

I know that alot of labs use 8.8 to 10.2 for the range for calcium and at a 10.3 you are high. I have been reading alot of Dr. Norman too and I read where he says that the body does not like calcium above a 10. The problem is getting our doctors to realize that.
I went and had my own blood drawn today for ionized calcium. I will let you know the results. My doctor refused to allow me another draw, so I had to pay an independent lab to draw it, but oh well, at least hopefully it will help me to know one way or the other. I also ordered a calcium 24 hour urine test today. I read that they are usually not very helpful, but Dr. Norman says that in cases where the calcium is only slightly elevated then sometimes it can be helpful.

I will post my numbers when I get them and let me know your results of the cat scan. I hope that that can show something for you.

 
Old 03-20-2008, 06:50 AM   #11
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Re: Please help! Any one with a parathyroid condition or symptoms!

Yes! I will wait to hear from you. I forgot to mention that my Endo said the ionized calcium test is old and unreliable and that is why he does not order it. (Don't forget...it was me who asked the receptionist to add it to the previous test.) So that is why when it came back higher than normal he ignored it!

Quote:
" My muscles are all roped with these bands of fascia and toxins are getting stuck inside of them."
YES!! This is the problem I am having with all of the muscles in my thighs!
I am truly beginning to believe that my mind is playing games with me....serious games. Hoppy

 
Old 03-20-2008, 09:54 AM   #12
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Re: Please help! Any one with a parathyroid condition or symptoms!

I know what you mean about the mind games it feels like your mind is playing. Are you more forgetful, loose train of thought, and basically can not think as well as you used to?
My mind just feels like it is not working as well any more. A few months ago, I noticed when I was balancing my checkbook, that I was inverting numbers. I could not figure out why my balance would not come out right, until I took a closer look. I have forgotten to write down deposits and everything.
I work out of my home through the computer and it is to the point now that I can not really do it anymore. I can not concentrate long enough to it even do it.
My hips and muscles too are constantly tight and in pain. I have a pain in the sternum area that I have had for over a year and nothing really seems to help it. Do you ever get chest pain or sternum area pain? Do you have acid reflux too? Do you ever get rib pain?
It seems like we are in the same boat. If I could get another calcium to show up high again, I think that I am going to contact Dr. Norman. I am not sure what else to do.
I'll let you know when I get my next calcium back.

 
Old 03-20-2008, 12:23 PM   #13
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Re: Please help! Any one with a parathyroid condition or symptoms!

Calcium levels and PTH levels fluctuate. From what I have read and experienced, if they fluctuate out of range one time, odds are it is hyperparathyroidism.

Two weeks ago, I had a parathyroid tumor removed. The only time my calcium levels and PTH levels were out of range were at the time of diagnosis. I had three consecutive tests about two weeks apart which revealed slightly out of range PTH and calcium levels. Since that time, about two years ago, all my tests have been in range. The tumor was found in an ultrasound and an sestamibi scan, so I had visual proof of the tumor, even though my numbers went back to normal.

At the time, I was referred to an ENT surgeon to remove the tumor, who decided to wait to remove the tumor because it wasn't very big and hadn't started to hurt my body. (He really said that. And I really listened to him. Stupid.)

When I had my next bone density scan, it showed I was losing bone mass. My PCP sent me to a endocrine surgeon, who said the tumor should have been taken out last year.

I am SO glad I had it taken out.

It wasn't benign...it was cancerous. :-(

Thankfully, all is well now. My endo surgeon removed my tumor, half my thyroid, lymphatic tissue and nodes, and my thymus, and all showed no signs the cancer had spread.

So...push for another run of labs, an ultrasound and/or a sestamibi scan. Cancerous parathyroid tumors are supposed to show wildly out of range calcium and PTH levels...but mine never were...and, for the most part, were very much in range. Just because your numbers are in range doesn't mean you don't have the disease.

If you think you have the disease, find someone who will take you seriously. Don't break a hip or two before someone will remove the tumor.

Good luck!

 
Old 03-20-2008, 02:04 PM   #14
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Re: Please help! Any one with a parathyroid condition or symptoms!

Hi GirlySoGroovy,
Thank you so very much for your post. I am so sorry to hear that you had to go through all of that and that it took so long to get your surgery.
It really is amazing sometimes what they will say to you. After my experience last week at my family doctor's, I decided to switch family doctors. I could not get in to the new one until April 23rd, but after my former family doctor's attitude last week, I will wait. Her complete lack of concern for the situation just shocked me. I have been sick for 13 months and she tells me that there is no way that it is my parathyroid because my pth levels were not elevated. She told me to stop eating gluten and come back in a few weeks. But she was not willing to retest my calcium for 3 to 4 months. So, I am paying to have the tests run myself out of my own pocket through a local lab.
Thank you so very much for your story. You are very inspiring. I am so sorry that you had to go through all of that though. Did you have alot of symptoms before your tumor was removed? How do you feel today?

 
Old 03-20-2008, 02:51 PM   #15
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Re: Please help! Any one with a parathyroid condition or symptoms!

Well, I just got my ionized calcium back at 5.4 and reference is 4.4 to 5.6, so now I don't know what to do or think.
I guess I will wait and see when the other 2 tests come back.

 
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