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First abnormal blood tests after a year of ME.

Discussion in 'General ME/CFS Discussion' started by Legendrew, Oct 3, 2013.

  1. Legendrew

    Legendrew Content team

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    I just got my last set of blood tests in the post from my doctor and they indicate raised ALT (94), slightly raised calcium (2.64mm/L) and low vitamin D (44.8nmol/L). It's a strange feeling, it's nice to finally have observable evidence that something is not right but equally it's a little strange to finally find something wrong after 20+ blood tests in the previous year. My doctor is now looking to pursue further tests such as PTH levels and repeat calcium/ALT so at least i'm finally being taken seriously! I'm now also in for a round of vitamin D supplements so lets hope they make me feel a little better.
    aimossy and Beyond like this.
  2. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Everyone I have seen in these years on health boards have had low vit D when tested. Me included, but mine was 16 mmol/L. The best way to supplement vit D is in a liquid, high absorbable form which includes an oil or is emulsified. It might be a widespread defficiency as some say.
  3. Crux

    Crux Senior Member

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    Hi,
    Elevated calcium can be potentially dangerous...not to scare you. What is the normal range, if they provided it?

    Personally I would hold off on the vitamin D until the calcium, and ALT comes down. Vitamin D supplementation can raise blood calcium levels, if one doesn't metabolize it well. ( It happened to me.)

    Corticosteroids have been used in the past to lower elevated calcium from vitamin D excess, but since you don't have elevated vitamin D, I don't know if this is the route to take unless you have low cortisol. Maybe a saliva test for morning and evening cortisol could be considered.

    I found that a reasonable dose of zinc helped to bring down my calcium levels, but this was after I stopped vitamin D supps. ( I'm not sure if this will apply in your case, but I'll bring it up to be considered.)
  4. Legendrew

    Legendrew Content team

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    I believe the normal range I was quoted for calcium was 2.25-2.5 mmol/l so i'm not too worried about that one as it seems a trivial increase. I'm going to have to make a follow up appointment next week so i'll see whether it is increased in the next round of blood tests that i'll undoubtedly have.
  5. snowathlete

    snowathlete

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    Be careful with supplementing for low bit d. Is the test for active or inactive form? You may have low inactive vit d because its all been converted into the active form (which may well be high). The two are linked so if you take supplement because of low inactive it may just raise your active form ever higher!

    From memory, my calcium was about the same. High can be a sign of parathyroid though i don't think it was in my case.
  6. Legendrew

    Legendrew Content team

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    Thanks for the advice, i'll be sure to ask at my next gp appointment before starting any prescribed supplements.
  7. Valentijn

    Valentijn Activity Level: 3

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    Legendrew
    If Vitamin D is low, typically calcium should also be low, not high. Having calcium be high while vitamin D is low can indicate very serious problems - basically primary hyperparathyroidism, which can be caused by a tumor, enlarged parathyroid glands, or cancer.

    Supplementing vitamin D will just increase calcium levels even more. Your parathyroid REALLY needs to get checked out thoroughly with your results.

    Getting a parathyroid problem treated might also substantially help with your ME symptoms.
    SOC, rosie26 and vamah like this.
  8. Legendrew

    Legendrew Content team

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    Yep, on the letter from my doctor they mention parathyroid needing testing - I had a test a few months ago for it but they lost the sample and never repeated it. Given that calcium is only a little over the normal I don't think my GP is too worried but I agree it needs testing and hope that it will be at my next appointment next friday along with repeats of all the standard tests.

    It'd be nice if it did turn out hyperparathyroidism was my problem by i'm not holding my breath unfortunately.
    aimossy, Nielk, rosie26 and 1 other person like this.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Legendrew

    You probably had Vit D 25 measured as that is the standard test. As Snowathlete mentioned, you might ask for Vit D 1,25 to be tested as, in ME patients, D 25 is often low and D 1,25 is high. 1,25 is associated with a rise in calcium so it would be good to check it before starting supplementation.

    Sushi
    Valentijn likes this.
  10. Legendrew

    Legendrew Content team

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    Hi, just a quick update on my bloods (posted here to avoid making another unnecessary thread)

    Calcium was repeated and came back as 10.1 (on the very high end of normal but not unusual for a 19 year old such as myself) however my PTH was tested and came back as 98.2pg/ml which is higher than the normal range which is roughly 10-60. The receptionist seemed sad to tell me and was surprised that to me it was good news. I have another appointment next week with my doctor however it seems like that I could now be facing a parathyroid issue either alone or in conjunction with ME. It seems strange since all my symptoms appeared very suddenly following a vaccination but we'll have to wait and see. I also started vitamin d supplements but only a a relatively small amount to see whether that does anything.

    Update: My doctor rang me today confirming that he believes primary hyperparathyroidism is at the root of everything I've been suffering with in this past year, as such he has cancelled my appointment with him next week and referred me onwards to an endocrinologist for further testing and hopefully to confirm the diagnosis!

    Thankyou snowathlete and Valentijn for bringing this up!
    SOC, Sea, snowathlete and 3 others like this.
  11. Valentijn

    Valentijn Activity Level: 3

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    Yay for finding something recognized and treatable! Fingers crossed that it's nothing too nasty.
    aimossy, snowathlete and Legendrew like this.
  12. Firestormm

    Firestormm Senior Member

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    Legendrew

    My fingers be crossed my friend. Good news indeed. What's the likely treatment if this thing is confirmed? Must admit it's not something I am overly familiar with - but coincidentally it did crop up in the MEA correspondence the other day.

    :thumbsup:
    Legendrew likes this.
  13. Legendrew

    Legendrew Content team

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    If it is confirmed then the best option would be removal of the tumour (99.99% are non cancerous according to the my doctor) in the parathyroid gland - so surgery on the neck although he mentioned that it is a much quicker and less risky process than it used to be and can be done in under 20 minutes by a skilled surgeon who does the operation frequently. That's a long way off yet since i'll need more tests to confirm, scans to see bone density and ultrasounds of the neck.
  14. snowathlete

    snowathlete

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    Yeay!
    Really pleased that you got to the bottom (potentially) of your problem and that it something with a very good chance of recovery.
    I had high end normal calcium and pondered parathyroid. Not sure if I had the other thing tested (will have to check!) but if I remember correctly you have four parathyroid glands so losing one or two isn't biggie and you should do very well once removed (assuming, as I hope it is, that parathyroid is your problem).
    Firestormm likes this.
  15. Legendrew

    Legendrew Content team

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    Thanks for all the support! I'm hoping this will prove to be 'it' but we'll have to wait and see what the endocrinologist thinks in November, in the mean time i'll continue to frequent the forums and continue to write articles for Phoenix Rising.
    Valentijn, Sea and snowathlete like this.
  16. rosie26

    rosie26 Senior Member

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    Hope all goes well for you Andrew x
    Legendrew likes this.
  17. aimossy

    aimossy Senior Member

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    Got my fingers crossed for this being your answer Andrew!!!!! Best of luck!
    Legendrew likes this.

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