High calcium level in blood - Parathyroid tumor not CFS?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Cinderbug, Jun 13, 2009.

  1. Cinderbug

    Cinderbug New Member

    Hi all.

    I have been dx with CFS & FMS for years. Totally homebound and disabled.

    Thursday I had routine labs done because I have felt soooooooo bad lately.

    My Calcium level is slightly elevated at 10.4.

    Problem is, Calcium levels should ALWAYS remain steady usually in the 9's because the 4 little glands on the thyroid gland ( called parathyroid glands), have only ONE job...that is to keep the calcium level stable ( preferably in the 9's).

    I got this info from Parathyroid.com.
    It is from a Tampa surgeon who has a clinic that takes care of nothing else.
    I had my parathyroid level checked Friday and will hear on Monday.

    The website above lists the symptoms that seem very similar to mine. The doctor on that site also says that a high ( even slightly high) calcium level almost always means a benign ( not cancerous) tumor on one of the 4 parathyroid glaands and that now days it is a 20 minute outpatient operation to remove it. He says all these symptoms go away.

    It also says calcium levels should never vary more than one or two tenths if the parathyroids are healthy. So rechecking the calcium is not the answer. He also says that a high calcium plus a normal parathyroid level is still a problem . He says you are only OK if the high calcium level is matched with a VERY low parathyroid level because these glands should " go to sleep" if the blood calcium is high.

    I actually hope this is the problem because I have been sick SO long and would love to have something that can be fixed.

    I found some posts on here about this from a couple years ago but nothing more recent.

    Has anyone here had any experiences with either high blood calcium or parathyroid problems?

    I would like to hear your experiences.

    Thank you,

    Cindy



    [This Message was Edited on 06/13/2009]
  2. Sacajawea2

    Sacajawea2 New Member

    Hi Cindy,
    Yes, quite informed in that area...had the issue show up in blood work and the 24 urine collection back in '06. You will need to see an endocrinologist about it, as most regular doctors know very little.
    It can cause no symptoms or cause achy bones, muscles, weakened bones and kidney stones...fatigue and just a general feeling of illness, flu, typical of what we already go through.
    I did not have a tumor nor was I able to have surgery but continue to get monitored every six months (I have another condition that would make it dangerous). There is no alternative treatment but in my case I can't have them removed at this time. I was just as excited as you Cindy, and hoped they could remove them and I'd feel much better. I hope if that's what you have that it will work out for you.


    Hey Jam, that's interesting that your calcium is high...I've mentioned this to you before, tgat perhaps it could be something to look into...especially common in your age group and the fact that you couldn't tolerate calcium alerted me (plus your thyroid issues, although these are completely separate organs).


    SJ
  3. Cinderbug

    Cinderbug New Member

    What was your blood calcium level, Sacajawea? How did it compare to your blood parathyroid level?

    The info in the Dr Norman website sounds like the urine tests are very rarely done anymore.

    He pretty much says that if you have all normal parathyroids your blood calcium will never be high unless your parathyroid hormone level is near zero because a good parathyroid gland will shut off if it detects high calcium in the blood.

    Jam. you might want to look at that website I mentioned. He shows charts where a 10 calcium can be too high depending on what the PTH level is but usually it is over 10.2. That doesn't sound like much difference but it is the paras job to keep it in a very narrow window.

    I will be very interested to see what my PTH is.

    Anyone else have a high blood calcium level or know someone who does?

    I am not getting my hopes up to high but I am keeping my fingers crossed.

    Cindy

    Oh. and no. I have never taken calcium supplements and I am very sparce on dairy.[This Message was Edited on 06/13/2009]
  4. Cinderbug

    Cinderbug New Member

    gb---

    please look at the parathyroid.com website!

    He says blood calcium can NEVER be high if the paras are normal unless the pth blood test is near zero. If blood calcium is normal the next time it means it bounces around which means the paras are not doing their job. Also please look at the symptoms. Maybe you need a pth test.

    He explains it well on the website.

    Cindy
    [This Message was Edited on 06/13/2009]
  5. Bluebottle

    Bluebottle New Member

    I have had a parathyroidectomy because of hyperparathyroidism. This was found by a slightly elevated blood calcium level and a very high calcium level in my urine at a 24 hour urine collection.

    I'm still housebound with M.E./FMS/Lyme.
  6. Cinderbug

    Cinderbug New Member

    You didn't feel any better after the surgery Bluebottle?? What was your parathyroid level?

    Oh no. They say if you need this procedure you can think clearer. Is this true?

    I am sorry you are still having problems.

    Thank you for responding.


    Cindy
    [This Message was Edited on 06/14/2009]
  7. Sacajawea2

    Sacajawea2 New Member

    Hi!
    I haven't had a chance to look for the paperwork which shows the blood levels (very big file on my health sadly) but will let you know..it was right at the mark for abnormal and like Bluebottle mentioned, my endo did not think it would "cure" me or even make much of a difference. He said he had more hopes for Vitamin D giving me some lessoning of pain and he sure was right! I was put initially on 50,000 units a week and then moved to 20,000. I still fight with a low level of Vit D, though but that improved my pain levels like you wouldn't believe. This was just part of the work up he did on me. I also had some minor hyperthyroid issues (caused by a drug) and other abnormal test results.

    He did the 24 urine test not just for that but for other things but it did show up with that. I also had a major work-up and all sorts of scans, tests and bloodwork, and MRI, ultrasounds. They found something else, sent me to a neurologist AGAIN, and that time the major problem was discovered. So I see both every six months.

    So for me, a visit to an endocrinologist was NOT a wast of time. They do such an extensive workup on you (based on your paperwork) that I'm sure you will get to the bottom of it eventually. I found a really good doctor and sadly, he left his practice just two months ago and I have not tried to find another.

    Hi advice was to only get calcium from food sources (I have weak bones too) and not in a suppliment form, as it was too hard on my kidneys.
    Each of us is different so I would definitely get this checked out and hope if that's what you have, you can get proper treatment.

    Hope this makes sense, between the fog and interruptions (kids) I'm afraid to edit or I'll lose it!

    SJ
  8. Sacajawea2

    Sacajawea2 New Member

    Hi!
    I haven't had a chance to look for the paperwork which shows the blood levels (very big file on my health sadly) but will let you know..it was right at the mark for abnormal and like Bluebottle mentioned, my endo did not think it would "cure" me or even make much of a difference. He said he had more hopes for Vitamin D giving me some lessoning of pain and he sure was right! I was put initially on 50,000 units a week and then moved to 20,000. I still fight with a low level of Vit D, though but that improved my pain levels like you wouldn't believe. This was just part of the work up he did on me. I also had some minor hyperthyroid issues (caused by a drug) and other abnormal test results.

    He did the 24 urine test not just for that but for other things but it did show up with that. I also had a major work-up and all sorts of scans, tests and bloodwork, and MRI, ultrasounds. They found something else, sent me to a neurologist AGAIN, and that time the major problem was discovered. So I see both every six months.

    So for me, a visit to an endocrinologist was NOT a wast of time. They do such an extensive workup on you (based on your paperwork) that I'm sure you will get to the bottom of it eventually. I found a really good doctor and sadly, he left his practice just two months ago and I have not tried to find another.

    Hi advice was to only get calcium from food sources (I have weak bones too) and not in a suppliment form, as it was too hard on my kidneys.
    Each of us is different so I would definitely get this checked out and hope if that's what you have, you can get proper treatment.

    Hope this makes sense, between the fog and interruptions (kids) I'm afraid to edit or I'll lose it!

    SJ
  9. Sacajawea2

    Sacajawea2 New Member

    Yes, mention it to your doctor at your next visit...she certainly would know more than anyone if it's something worth looking into, since you go to her regularly. The glands are right next to the thyroid but they are totally separate organs.

    I can't remember why (other than being hard on my kidneys from other damage done by my x) he said to stop the calcium supps but said very important to get them from other sources. I'll have to refresh my memory and get back to you on that one!!! I did used to take a calcium supp, plus I was on Actonel for a year when I was 35 or so (I'm only 41 now). I was born with low bone density apparantly so the actonel worked somewhat but I couldn't continue it. I have mild osteopenia but it has improved instead of getting worse so that's good!



    SJ
  10. Cinderbug

    Cinderbug New Member

    Nink,

    I am sorry to hear that the surgery did not improve your symptoms.

    If I do qualify for this surgery I am hoping it will make my thought process clearer. The web site I referred to says that the brain is very affected by the high blood calcium .

    Anyone else hear have this surgery?

    Thank you for all who replied.

    Cindy