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High ALP: my doctor thinks it’s deconditioning, but I can find no evidence for that

Discussion in 'Laboratory and Genetic Testing' started by WillowJ, Nov 11, 2018.

  1. WillowJ

    WillowJ Senior Member (Voting Rights)

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    So I have this new lab result, a mildly high alkaline phosphatase (ALP).

    My doctor ran some tests, and thinks that because she was able to trace the enzyme to a bone type (yes, apparently bone can cause a liver enzyme test to be high), and it’s not parathyroid, it must be deconditioning.

    I can’t actually find any evidence that deconditioning would cause this. I have been looking at causes and I found several things that weren’t tested, one of which would be a good fit for me.

    Most comprehensive article I found on differential diagnosis:
    http://www.clinicaladvisor.com/hospital-medicine/elevated-alkaline-phosphatase/article/600760/

    When looking specifically for deconditioning and ALP, I found two articles on microgravity that specifically said ALP is not affected, or is downgraded (not increased).

    Looks like high ALP is a risk in severely ill, inactive people (not seeing the link that says that right now), but if as a bone building disease it would be from low vitamin D, from lack of sunshine, parathyroid, or digestive issues.

    She also told me there’s no treatment, but there is.

    Just wanted to share what I found in case others run into the same issue.

    This exercise as a panacea has to end. I am sure it’s great for healthy people (or 90% of healthy people anyway, but I lost that citation), but in ill people, pretty sure it’s a marker of how well/badly someone is doing, not a way to improve. Correlation isn’t causation.
     
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  2. Barry

    Barry Senior Member (Voting Rights)

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    Deconditioning can be a secondary condition, not necessarily the primary condition.
     
    Last edited: Nov 11, 2018
  3. JaimeS

    JaimeS Senior Member (Voting Rights)

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    There are a ridiculous number of things that could produce a slightly high alkaline phosphatase, including but not limited to:
    • biliary obstruction
    • liver damage
    • bone loss or increased turnover (including due to RA)
    • 'leaky gut' / gut permeability issues
    • herpes zoster (shingles), mono (EBV), or CMV infection
    • bone cancer
    • low Vitamin C
    • low adrenal function
    • tissue damage / endothelial damage
    • pancreatic dysfunction
    • some drugs
    But sure, it's parathyroid, deconditioning, or nothing. :whistle:

    Several of these possibilities can produce elevated alkaline phosphatase downstream through liver damage, including the mono, CMV, and some drugs. You have to look more than one step away from a symptom or an elevated value to arrive at potential answers.

    I'm not a doc, this isn't medical advice, and so on; you know the drill.
     
  4. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Sure :)

    There’s a test that can show how much is liver, intestine, bone, or placental. It’s called alkaline phosphatase isozyme. (There are some causes of ALP elevation, like heart failure, that I don’t think the test can detect.) We did that test and it showed bone. (Did some other tests, too, but the bone isozyme ALP test was the one pointing somewhere.)

    It’s possible the liver isozyme contribution to ALP was actually low. (My AST is, but my clinic lab simply amended the values so it doesn’t get a flag anymore, instead of following up. Apparently they don’t care about malabsorption disorders or whatever else would cause the low liver enzymes. :rolleyes::banghead: )

    Parathyroid disease is one cause of mildly high bone ALP, but not the only cause. There are others, as Jaime was pointing out. It’s not a simple answer.

    My links might be a little hard to see in my OP because on this tablet it’s sometimes a bit hard to highlight, for some reason maybe a bit harder on this forum than elsewhere. So most of my links are embedded under a single word or acronym.

    Edited for clarity.
     
    Last edited: Nov 11, 2018
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Occam's razor is popular but not always right. Especially in medicine when so many things can cause the same result as @JaimeS has shown above.

    I would suggest getting your bone density tested because this can be caused by deconditioning. In another thread i have wondered if ME could cause reduced bone density independent of deconditioning which is certainly a possibility as well that i have some anecdotal evidence for. So maybe you shouldn't because your doctor would latch on this if shown low.

    That said if you and your doc think this is worth investigating further then each one of those causes will need to be ruled out.

    And if it is deconditioning then there is not much you can do about it, reconditioning with ME is like Russian Roulette with worse odds.
     
    Last edited: Nov 11, 2018
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Bone alkaline phosphatase and liver alkaline phosphatase are different enzymes. The standard alkaline phosphatase assay measures a mixture but specific tests to separate the two have been around for decades. A raised bone AP has different causes from liver AP. Causes of liver A rise are multiple. Causes of bone AP rise are quite limited - essentially increased bone remodelling.

    I have never heard of deconditioning causing a raised bone AP and it seems to me extremely unlikely andrlobably a confusion on someone's part! Deconditioning can lead to osteoporosis but this is NOT associated with an AP rise. What may cause confusion is that deconditioning can easily be associated with vitamin D deficiency, which does produce a raised AP. The other biochemical feature is low calcium but that is inconsistent - often normal.

    Otherwise bone AP may rise in association with any disease that interferes with bone and causes remodelling.

    Whether a rise in bone AP needs further investigation depends on whether it is changing and how high it is. But it is not due to deconditioning as far as I know. Testing for a parathyroid hormone and vitamin D level would be standard.
     
  7. JaimeS

    JaimeS Senior Member (Voting Rights)

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    So here's what I see for increased bone isoenzyme:
    • Paget's disease
    • Rickets (!)
    • bone cancer
    • osteoporosis/osteomalacia
    • parathyroid hyperfunction
    Still no hints that deconditioning or parathyroid issues are the only possibility.

    Also, someone might get a false reading from pregnancy or phenytoin (also dilantin, an anti-seizure med).

    Again, not a doc, etc. -- just reading from the book I use for such info. :)
     
  8. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Thanks. @JaimeS for looking things up and for sharing my impatience with the “oh it’s deconditioning” story. My doctor is new to me and generally I like her, just she doesn’t understand my diagnosis yet, but I think we can get there, if the rheumatologist I just saw didn’t ruin everything.

    Rickets, yes, in children, osteomalacia causes rickets because the bones are still growing. In adults, the bones are no longer growing, so there’s not the same deformity, but the bones are still compromised.
    https://courses.washington.edu/bonephys/hypercalU/opmal2.html

    I didn’t read the false reading from pregnancy bit anywhere else, but no chance of that.

    And you’re right that there could be several steps.

    @Alvin That’s a good suggestion about the bone test and I actually have several other risk factors for osteoporosis. My doctor didn’t have to think much when we were talking about routine screening tests and I suggested this one. She ordered it before the ALP test came up.

    I actually read post-polio syndrome on one of the lists of risk factors for osteoporosis (pretty sure it was that list and not osteomalacia) so why not ME, too?

    There are some medications for osteoporosis, but as my vitamin D is typically low, I want to start there, myself.

    Thanks so much. That helped me know my thinking is good and gives me confidence for talking to my doctor.

    My parathyroid hormone is fine. My blood calcium is fine.

    My vitamin D has been low every time it was tested, but hasn’t been checked in about 3 years. It was 14.8 at that time. I have no idea if the D that I am talking is sufficient, and my previous PCP did “not want me to worry about” my vitamin intake, so refused to discuss vitamins. Hopefully I can get my new doctor to talk about this.
     
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  9. JaimeS

    JaimeS Senior Member (Voting Rights)

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    This was apx where mine was -- 15.2 units or something like that. My doc saw this as a cause for alarm. I take pretty high levels of Vit D.
     
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  10. WillowJ

    WillowJ Senior Member (Voting Rights)

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    My parathyroid, vitamin D, and TSH are all within normal range. My doctor told me to keep taking the same amount of Vitamin D, so at least I know I am doing the right thing for now.

    It changed from about 3x high to about 2x high. Because it decreased and doesn’t seem to be from any common causes, my doctor is inclined to ignore it. Does that seem reasonable?

    Since it’s not osteomalacia, I no longer have any good ideas.
     
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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It seems it but trust your doctor, not me!
     
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  12. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I do like and trust my doctor.

    I have learned to never assume any one person knows everything, so I always check more however I can.

    Thanks.
     
  13. ReelMan007

    ReelMan007 New Member

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    Hi @WillowJ,

    I am glad I've found this thread. Back in October, I had my bloodwork done and it came back with ALP reading of 142 (38-126 units/L). My doc asked me to follow up with the same test after 3 months. Last week when I repeated the test, he had them broken down to Liver ALP and bone ALP. Turns out my liver ALP reading is well within the limits but the bone ALP reading is about 3X high (in the 60s). He has no idea what to make of it and says he will consult with a hematologist but asked me to keep taking vitamin D (my October Vit. D level was 27 ng/mL). My question is: How much does vitamin D contribute to the high bone-specific ALP readings? How are your numbers now? Thanks for the help. It is greatly appreciated!
     
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  14. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Hi, welcome to the forum.

    First, I am not a doctor.

    As a patient I find it useful to search my test results and double-check that my doctor isn't missing something. Or sometimes the doctor will be confused what to do, like you're finding.

    I put a some links I found helpful in previous posts, and others put advise from books or from their experience as a doctor in previous posts.

    Vitamin D deficiency can cause some bone problems, and vitamin D deficiency can be caused by some digestive problems. There are some other tests your doctor could run, like the parathyroid test, thyroid test, and so on.

    I don't have any new tests related to this since I last posted.

    Diagnosis has a lot to do with the other symptoms and your history.

    I am not actually sure whether one counts how high the ALP is based on the overall ALP or the individual isozymes. This was confusing to me, too.

    I hope the hematologist is able to help, and that you're able to get a satisfactory answer.

    I never figured out what was causing my elevated ALP. But it didn't seem to be any major disease, most likely.
     
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  15. ReelMan007

    ReelMan007 New Member

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    Thanks for the info. I was prescribed some more tests by the hematologist. I will post updates once I have them.
     
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  16. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Did anyone find anywhere reputable to find out more on ALP?

    Any idea why ALP might go down?
    As in dropping steadily over a few years and now distinctly low (I noticed it in previous years but now it’s being flagged by the lab as low - reminds me of when I got hypercalcaemia years ago but that one is more obvious).
    And what other blood tests might be indicated to find out more?

    I agree, ask my doctor, but I find it better to get my slow brain around it all a few times before I ask. In case I waste time and medical attention on stupid red herrings and miss out on time for legitimate things we can actually do something about.

    Is this one of those blood tests that just doesn’t mean anything in isolation? Or is always good to be low? Or are there other markers that need to go with it to be meaningful?
     
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  17. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Hi how are you doing now? Was the hematologist any help?
    Sorry I wasn’t more helpful before; I just don’t know anything I haven’t already posted here and I wasn’t able to repost at that time.

    Osteomalacia was my idea for me about how to tie together Vitamin D, high ALP, and some other signs and symptoms I was having. But I didn’t seem to have that (because of Vitamin D being fine currently, or something).
     
    Last edited: Jul 25, 2019
  18. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I like to have an idea of something before I ask my doctor, too, so I don’t ask unnecessary questions and so I know if they’re saying something silly.

    ALP is thought of as increasing slightly with aging. Doctors are in many cases not very concerned about low levels of things (and many resources on ALP talk about high results but not low ones), but LabTestsOnline does show some potential causes for low results, as does Healthline.
    https://labtestsonline.org/tests/alkaline-phosphatase-alp
    https://medlineplus.gov/ency/article/003470.htm
     
  19. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    For low ALP you might want to get a P5P/PLP (for vit B6) test done. Pyridoxal 5'-phosphate is a substrate for alkaline phosphatase
    https://www.ncbi.nlm.nih.gov/pubmed/9536930
     
  20. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Just saw this quote
    Have you looked into hypophosphatasia. This page talks about low ALP and hypercalcaemia
    https://rarediseases.org/rare-diseases/hypophosphatasia/
     

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