Montoya study - High calcium in participants

[SaraM]

I have participated in a few studies done by Dr.Montoya at Stanford. Today I got a call from them informing me that my calcium level is high (my level :10.6 , normal range under 10.2) - I was not taking calcium around the time they did the blood draw. A few weeks ago I was talking to them about their heart study, and they told me that some of the participants in that study had higher than normal calcium level,too. On the other hand, a few months ago my annual screening showed a high calcium level; doc ordered a test for parathyroid hormone ( my level 61 - normal level 10-65). Then he tested calcium again and it was high normal this time. Here is what I found on the net today :

http://parathyroid.com/parathyroid-symptoms.htm


The important point is that 20% of people with parathyroid tumor have normal PTH with high calcium. I have an appointment for blood draw, ordered by my GP , tomorrow to test for cal, and vit D .

 

[rlc]

Hi SaraM, dont know if you have seen this page from the parathyroid site http://parathyroid.com/diagnosis.htm it says

"High calcium and ANY PTH LEVEL that is not very low means you have hyperparathyroidism!"

"Because If the parathyroid glands were NORMAL (no tumor present) then the high calcium would make the normal parathyroid glands go to sleep and the PTH levels would be very low (say, between 5 and 8)."

It also says that most doctors havent got a clue on diagnosing hyperparathyroidism, and that it is best to print out the diagnosis page and take it to your doctor, or chances are they will get it wrong!

I have a friend who had this and then had the surgery and is now 100% fine, so if this is what youve got, the outlook could be really good.

All the best

 

[SaraM]

Hi Rlc,
I have read that page on parathyroid.com. I am going to test my Cal a few times first. I have also read about people's experience with this type of surgery done by the doctor who runs that website ; some were good , and some were really bad. So, I am going to be careful. The interesting point is that hyperparahyroidism is very similar to CFS. Did your friend have CFS?

Best regards
Sara

 

[SaraM]

Hi Rlc,
I have read that page on parathyroid.com. I am going to test my Cal a few times first. I have also read about people's experience with this type of surgery done by the doctor who runs that website ; some were good , and some were really bad. So, I am going to be careful. The interesting point is that hyperparahyroidism is very similar to CFS. Did you friend have CFS?

Best regards
Sara

 

[snowathlete]

I looked into this when I first got diagnosed with me. I wanted to check I wasn't misdiagnosed. Symptoms are similar. Though you only get the weird immune system with me.
My calcium was high normal and doc wouldn't look any deeper. I'm pretty much satisfied I don't have it but I think everyone with me should try to rule it out. Prognosis: much better than with me.

 

[rlc]

Hi SaraM, my friend went through years of suffering, and was told all kinds of wrong diagnoses, CFS depression, somatic disorder etc, before it was finally found to be parathyroid, had the operation and is completely cured, so it all worked out well in the end, shame it took so long for the doctors to work it out.

Im not a doctor, but from my reading of what the parathyroid site says, your high calcium and high normal PTH means you have hyperparathyroidism, so if you get the Calcium and PTH re tested to make sure its not a lab error, and the results are the same then it should confirm the diagnosis, and then it can be treated, but make sure you get a good surgeon!

Hope it works out well for you and you dont have trouble with an out of date doctor!

All the best

 

[snowathlete]

rlc - do you know what your friends levels were?

 

[rlc]

Hi snowathlete, no I dont know what their levels were, but you said your calcium was high normal, from what Im reading on the parathyroid site there isnt really a true safe normal range for Calcium, people can have hyperparathyroidism and still have calcium levels in the normal range.

The diagnosis should be made on the balance between Calcium and PTH, if your parathyroid is healthy, and your Calcium is high normal your PTH should be low, because Calcium suppresses PTH levels.

Parathyroid tumours produce extra PTH (parathyroid Hormone) so there is a lot more PTH in the body, so when peoples calcium levels are high or high normal, because the tumour is producing a lot of extra PTH, PTH levels arent suppressed by the calcium, and remain high or high normal, and high normal or high PTH levels with high or high normal Calcium is how the diagnosis should be made. So you can have high normal Calcium and high normal PTH and still have Hyperparathyroidism.

Unfortunately about 90% doctors are unaware of this and will only diagnose Hyperparathyroidism when both Calcium and PTH are above the normal range and because of this a lot of people are getting the diagnosis missed, and because the symptoms of Hyperparathyroidism are basically the same as CFS, they tend to end up with a CFS diagnosis. In the US it is estimated that 100,000 people develop it each year, so its very large numbers that are in danger of having the diagnosis missed.

In your case if your Calcium is high normal, you need to know what your PTH level is, if it is low then youre OK, if it is high normal then you probably have hyperparathyroidism, Calcium levels fluctuate a lot in the body so high normal one day might be above normal the next.

It may be worth getting Calcium and PTH retested just in case and then compare the results with the info on the parathyroid site.

All the best

 

[snowathlete]

thanks rlc.
This rings some bells from what i read before. I just looked up my calcium records. 2.38 in 2004. 2.55 in 2009. (normal apparently 2.1-2.5/6 mmol/l)
I think i had ME back in 2004, but not anywhere near as bad.
I think, following this i had another test done, and it was a tiny bit lower than 2.55 but i cant remember. I dont have a copy of records since 2009.

I had some blood tests (about an arm full) on Wednesday, so results should be on Monday/Tuesday. I expect Calcium is on the list, so i'll see what it is. If its hight again then i will see about a PTH test.
I do have two small calcium deposits on my body. I looked them up and its not that uncommon, but perhaps its related to a high calcium level. I do have alot of dairy, or at least did until i started a diet about 40 days ago, so it might be interesting to see what change there is.

I will definately get a test done if its high again, because its so worth checking. imagine how great it would be to have this, rather than ME...you can actually do something about it. Mind you, I dont think (happy to be corrected) that you get immune oddness with parathyroidism.

 

[Abha]

Hi Rlc,
I have read that page on parathyroid.com. I am going to test my Cal a few times first. I have also read about people's experience with this type of surgery done by the doctor who runs that website ; some were good , and some were really bad. So, I am going to be careful. The interesting point is that hyperparahyroidism is very similar to CFS. Did you friend have CFS?

Hi SaraM,
I have ME/CFS and back in 2005 I was finally diagnosed with hyperparathyroidism(after diagnosing it myself with the help of the site mentioned).I had my operation with the surgeon(s)in America(early 2006) with the owners of the site that is mentioned.The doctors were first class and I had the largest tumour of 8(?) patients operated on that day.It was mentioned in the report that an earlier diagnosis of my problem would have helped me.I would definitely recommend that Clinic to everybody who had parathyroid disease.The site on the web is excellent too.If you want more details feel free to contact me privately.

 

[SaraM]

I just got my latest blood test results in the mail .

Calcium : 10.5 (normal range up to 10.2) -ordered by my GP

Calcium test done by stanford : 10.6

Previous results : PTH 61 ( normal up to 65) , Cal 10:2 (by my GP)

my first abnormal Cal : 10.5 ( a few months ago)

I am going to ask my doc for a new cal and pth, ionized cal, and a 24 hour urine cal, to rule out hyperparathyroidism.

 

[SaraM]

Hi Abha,
Thanks for your advice. I read your previous post about your surgery yesterday, and wanted to PM you.

 

[rlc]

Hi snowathlete, RE I will definately get a test done if its high again, because its so worth checking. imagine how great it would be to have this, rather than ME...you can actually do something about it. Mind you, I dont think (happy to be corrected) that you get immune oddness with parathyroidism.

Hope for your sake that it does turn out to be hyperparathyroidism, because it is very treatable, so well worth getting the tests done, it appears that although there hasnt been to many studies on it parathyrodism does cause some immune oddness as studies like this one show http://www.ncbi.nlm.nih.gov/pubmed/9650007 It can also cause low vitamin D which also does strange things to the immune system.

Unfortunately there are a lot of diseases like Parathyroidism, Addisons and Hemochromatosis that doctors on the whole either dont know how to tests for or how to properly intemperate the results which all have a similar symptom pattern as ME, so a lot of people end up with the wrong diagnosis. Its so good that we now have the internet and can find these things out; shame doctors dont seem to use it much.

All the best

 

[SaraM]

It can also cause low vitamin D which also does strange things to the immune system.

My D level is 48 ( just got the result). I am very confused now.

 

[rlc]

Hi SaraM, is your 48 vitamin D level in ng/ml or nmol/L different countries use different units of measure, so I cant tell if yours is high or low.

A large number of people with parathyrodism have normal vitamin D so its not really a very useful diagnostic test for parathyrodism, the site says 67% of parathyroid patients have low vitamin D and 33% have normal vitamin D. Its all explained on this page http://parathyroid.com/low-vitamin-d.htm

So from what I know youll have to get a new PTH result to find out, if your calcium is high and your new PTH is high normal or high then according to my understanding of the information on the site this means you have hyperparathyroidism no matter what the vitamin D level is.

Hope this helps

All the best

 

[SaraM]

Hi rlc,
The D result is on my insurance website which I cannot access right now, but 75 was high normal range. Based on the story of a patient of parathyroid.com, I am going to ask my doc to check pth, cal, ionized cal every month for 2-3 months. This will let me know if I should do some further testing. I feel tightness and pain in my thyroid, and the palpitation and the chest pain are unbearable , especially at night.

Best

 

[rlc]

Hi SaraM, sounds like your vitamin D is well within the normal range so Hyperparathyroidism is still a possibility, hope you can get retested soon and find out for certain, the site says on this page http://parathyroid.com/diagnosis.htm if the blood calcium is high, then there is over 99% chance that a parathyroid gland has grown into a tumor. So as you have had three high calcium results, plus a high normal PTH there is a very high chance this is what you have. Hyperparathyroidism is one of the few diseases were your not supposed to take vitamin D supplements with, so if youre taking any Id stop until you know the correct diagnosis.

Sorry youre having such a bad time with symptoms, but if it turns out to be Parathyrodism it is very treatable, so there is hope that it may be over soon. Make sure that your doctor reads the diagnosis page on the site so they know what theyre doing; most of them dont so its very important to get them to read it.

All the best

 

[SaraM]

Thanks RLC, I have stopped taking D, and I am one of those people who feels really bad even on a small dose of D. I will update this thread when I do more tests.

take care

 

[Abha]

HI Sara,
Don't take any calcium supplements until you get your tests.Before I went to Florida for the operation a clinician/doctor(?)here(UK)wrote a report to my own GP re what calcium I was to take.That however was wrong advice.I had to correct my GP re this.On Dr Norman's site it mentions that one has to take extra calcium once the tumour is removed...but not before.seemingly it could cause a spike and kill one(check the site www.parathyroid.com)..lots of info there.By the way Dr Norman advised calcium citracal(widely available in USA)but not here.

 

[SaraM]

Hi Abah,
Thanks for your advice. I will not take cal any more. Some websites mention that high blood cal can be due to low cal intake, but I do not think this applies to me. Instead, I am taking more magnesium now.

Best