Invest in ME Conference 12: First Class in Every Way
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Blood test abnormalities

Discussion in 'General ME/CFS Discussion' started by Katyw, Sep 16, 2014.

  1. Cheesus

    Cheesus Senior Member

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    Niacin is known to raise ALT:

    http://livertox.nih.gov/Niacin.htm

    Having said that, I also have elevated ALT (but not AST). Mine have been bandying about from between 80 and 150 now for about 6 months. My doctor thinks it is due to supplements but I discontinued all supplements 4 months ago and it is still going up and down.

    I have been tested for hemachromatosis, hepatitis, autoimmune hepatitis and all the other usual suspects. I have an ultrasound coming up next week. I imagine it will be clear because the chance of a 60kg 5' 10" male who doesn't drink having fatty liver is very slim! If my ultrasound is clear and my ALT are still elevated next week then my doctor and I are going to begin investigating what he called 'The small print' - all of the rare diseases like Wilson's Disease which the lab won't test yet because it is so expensive.

    Honestly, though, I think it a toxic problem. I often get foamy urine which has been tested for proteinuria many times and always been negative. I also often feel a special kind of groggy when I am about to get the foamy urine. I am about to undergo extensive testing with a functional medicine doctor so I an hopefully uncover the source of my toxicity.

    If this is still an issue for you in a few months give me a prod and I will tell you where I am at with my issues.
     
    Katyw likes this.
  2. Sea

    Sea Senior Member

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    If you are found to have a fatty liver Cheesus a fatty acid oxidation disorder (FAOD or FOD) would be worth looking into. These are genetic metabolic disorders that involve inability to properly process various fats and the milder ones can sometimes only show up in adulthood.
     
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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Katyw, I'm a retired medical technologist and I hope you will take heed of Dr. Edwards advice and look to your liver as the cause of your problems. Laboratory tests and results are the roadmap for diagnosis and systemic diseases (such as liver problems) leave their marks in the blood.

    While I'm fairly certain I've had CFS for 24 years now, I'm approaching the age where systemic diseases such as chronic kidney disease and hypothyroid dysfunction are all too common. I keep after my doctors to follow up on abnormal kidney and thyroid tests and not just blow me off. Yes, I have to keep after my best primary care doctors to do the right thing and refer me to specialists and/or provide the best treatment when they are negligent, so it comes as no surprise to me that some of your concerns could be dismissed as just another CFS/ME symptom.

    Doctors are not dumb. They are bright, but some are less diligent than others when applying what they know, i.e., some are asleep at the wheel and you are the unfortunate passenger.

    I would be very grateful if a doctor such as Dr. Edwards were to comment on a particular puzzling problem I was having. He has nothing to gain here and speaks with empathy to help a suffering human being, the sign of someone who went into medicine with the best of intentions to help the needy.
     
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  4. NilaJones

    NilaJones Senior Member

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    A thousand times yes, and applies to every symptom of every disease.
     
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  5. Katyw

    Katyw

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    @Cheesus thanks so much for your reply. I would be very interested to see what your tests come back with. Yes please keep me in the loop.

    @CFS_for_19_years thanks for your input. Yes I was so glad that Dr Edwards commented on my post. I know that I am fortunate to have his input.

    The liver is something that has concerned me and was regularly fobbed off. At least now I have a ultrasound coming up and hopefully push for further testing. I'm not sure what testing I can ask for as I have has a panel of liver tests and everything was ok apart from ALT and AST.

    I agree that doctors are definitely not dumb and I like the falling asleep at the wheel/passenger analogy.

    I am also considering getting the MTHR gene mutation testing as I seem to have issues with b12 and folate so could be a methylation problem. Whatever I have has a genetic element as my mum has had the same symptoms and suffered badly. She has never had problems with her liver.

    Does anyone think that is worth getting?

    Again- thank you everyone. I really do appreciate any help in this. I am trying everything to be functional again.
     
  6. Cheesus

    Cheesus Senior Member

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    Hi Katy,

    If you're considering looking into methylation, I recommend you listen to the podcast I just posted here:

    http://forums.phoenixrising.me/index.php?threads/chris-kresser-podcast-on-methylation.32666/

    Check the third post down as I messed up the initial link! It is basically a really good primer to methylation: how you go about testing, the ins and outs of environment vs genes, and what you can do about it.

    Regarding your liver you need to be asking for iron serology to check for haemachromatosis, a hepatitis screen and an autoantibody screen to look for autoimmune hepatitis. You also need to get the liver panel rechecked about once every month so you can track what is happening.
     
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  7. Cheesus

    Cheesus Senior Member

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    Do you have a doctor that is supporting you in looking at methylation and stuff? Is it your NHS GP running the liver tests?
     
    Katyw likes this.
  8. Katyw

    Katyw

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    @Cheesus Thanks a lot of the link- I'm definitely going to look into this.

    In relation to the liver testing. I have had a negative hepatitis test and I have also been screened for autoimmune hepatitis and that was negative. I have had the liver function tests done every time I have seen a specialist which has been every 6 weeks in my case. The ALT has been the only result high but it did go within normal range once. The last result as per above was the highest yet. I have been on aciclovir though.

    I have checked the latest blood tests that were taken in July and my ferritin was within range but maybe at he lower end of the range.

    I have emailed my ME doctor about possibly having a functional b12 deficiency and the methylation process and hoping to hear back from her soon.
     
  9. Katyw

    Katyw

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    I've just looked back at all my blood tests results and they consistently show a lot of elevated results:
    ESR, CRP, white blood count, lymphocytes (last one was within range though) ALT, AST, B12, folate, plasma viscosity, IgA
    Also some low results:
    Creatinine, mean cell volume and mean cell haemoglobin (but normal ferritin)

    Any ideas?

    I have been referred to a rheumatologist, immunologist, infectious diseases, cardiologist and none of them are taking these results seriously.
     
  10. Cheesus

    Cheesus Senior Member

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    None of them are taking it seriously!? What the hell!?! ME does not produce test results like that.

    No unfortunately I have no ideas. I've done research on ALT but not on any of the other stuff and I am certainly not a doctor.

    If you live anywhere in Northern England I would suggest seeing the immunologist Dr Spickett at the RVI in Newcastle. He is the regional ME/CFS NHS 'champion'. I saw him recently and he gave me a very thorough checkup and reviewed my medical history and blood tests. He wasn't sure what was causing my rise in ALT but he certainly was taking it seriously and wanted me to pursue it which my GP is thankfully doing doggedly. He also spotted a number of possible co-diagnoses that I am currently under assessment for. My impression of him on leaving what that he is a very skilled physician. If you were consistently meeting dead-ends with other specialists I have a feeling having him in your corner would focus their minds!!

    If that isn't feasible for whatever reason, then you need to find someone else who will take this seriously. I can't believe your GP isn't on the warpath with these specialists. Pending the outcome of your ultrasound you need to push your GP to get you an explanation for what is happening here.
     
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  11. Cheesus

    Cheesus Senior Member

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    Also, regarding methylation, if it were me I would put any new treatment decisions with my ME doctor on the back-burner until I had the cause of these abnormalities identified. I would not want to start poking around and turning myself into a chemistry experiment if I had an unidentified illness.

    That is just me though and obviously it is something you would want to discuss with your medical team.
     
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  12. acer2000

    acer2000 Senior Member

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    FWIW I have had very similar abnormalities for as long as I have had whatever is causing me to be sick. One of the things that is so hard is that I think that some of these abnormalities aren't typical for CFS/ME, but I, like you have had a hard time getting my doctors to take it seriously.

    Lab Findings
    Intermittent elevated liver enzymes (mainly ALT).
    Relatively Lymphocytosis (my lymph% is higher than my neut%).
    Elevated CD3 and CD4 T Cell Helper subsets.
    Low NK cell function.
    Occasionally mild elevation of calcium (i.e. 10.1-10.6)
    Elevated IL-8 on cytokine tests

    I have the following symptoms, so have been diagnosed with CFS/ME.

    Fatigue (with low V02 and AT), Cognitive Dysfunction, food intolerances to FODMAP carbohydrates (but no response to SIBO treatment), right upper quadrant abdominal pain (negative imaging tests), low body temp, dark circles around my eyes, flu like feeling, migraine headaches, tinnitus.

    I always wonder if I could find a doctor who would look at my case a bit differently, they'd uncover an alternative etiology.

    Since I became sick within 6 months of having surgery, I have blood tests every few months since before then showing this very consistent pattern in my results. The relative lymphocytosis started almost exactly with my symptoms. The NK cell function initially was elevated, but then became low after several months. I don't have good data on the T cell subsets or cytokines until after I started seeing an ME specialist (which was about a year after I fell ill). So I can't say what they were doing before or at the time I got sick.
     
    Last edited: Sep 24, 2014
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  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    RichVanK recommended that I not start methylation treatment while my liver was out of sorts.
     
    Katyw likes this.
  14. Cheesus

    Cheesus Senior Member

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    Just had my ultrasound. All clear. I will report back again when I have had my next bloods done.
     
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  15. Katyw

    Katyw

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    Just thought id post some updates- my liver ultrasound has came back with no abnormalities and so did all the tests of the liver (apart from ALT again). I'm relieved with the results but none the wiser as why my liver ALT has been elevated. This most recent test did show a decrease from the precious though.

    I think I just have to continue balancing out the deficiencies I have and rest. The tablets I am on for PoTS means that I can tolerate being upright more so that's positive.

    Thanks for everyone's input xx
     
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  16. Kati

    Kati Patient in training

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    hi @Katyw , I am one to have liver issues every once in a while. i am very sure it is related to my illness because my liver problems started with my initial EBV infection. A normal ultrasound and normalizing blood work sounds reassuring, but please know that gallbladder disease is very common in our patiemt population and that your liver enzymes should get rechecked every once in a while, especially if you have liver related symptoms such as pain, nausea, vomitting and something that sometimes feels like acid reflux.

    Do not ignore the signs that your body gives you.

    best wishes, Kati
     
  17. Katyw

    Katyw

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    Thanks for the that Kati- I agree that things need to be monitored. I don't have any of the liver related symptoms thankfully.

    I've also had some more results back from immunology (again dr not willing to look into things further as he thinks the results are ok!) I have low NK cell function. I also have raised T cell CD3. I have no idea what that means. Is there someone/somewhere I could ask about this on here? X
     
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    All T cells are CD3 so you just have a high T cell count. That is very non specific but if it points in any direction it is infection - virus or intracellular bacteria. I am not surprised that the liver ultrasound is normal and I would not be very worried about a raised ALT on its own. What seemed to me out of line is the high CRP - which is made in the liver so your liver may just be a bit 'busy' because of issues elsewhere. Is everyone sure you do not have TB? That was always the one disease one had to think of when nothing else seemed to fit because it can show in so many ways. Maybe nothing will turn up but I remain puzzled.
     
  19. Katyw

    Katyw

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    Hi @Jonathan Edwards - thank you for posting again. I hope you are well.


    It is indeed puzzling! I will look into TB, I have recently had a chest X-ray which was clear though.

    I'm just not sure what to do as I'm coming to the end of help from the NHS so am thinking about paying privately but don't know what kind of specialist would investigate further.

    My main symptoms are post extertional fatigue (after minimal effort), headaches, sinus issues, Tacycardia and low blood pressure, swollen glands, flu like feeling. I really feel I'm constantly fighting an infection but I've been tested for so many infections and viruses and all negative. My ME doctor has prescribed aciclvoir as I was getting recurrent herpes infections frequently!

    I also did have low pneumococcal antibodies when tested but don't really want to have the vaccine as worried this will increase my POTS as I've just managed to settle the autonomic issues.

    I will keep preserving and hope I can find a suitable specialist.

    K
     
    Last edited: Oct 2, 2014
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  20. Cheesus

    Cheesus Senior Member

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    Katy, I honestly think it could be some kind of endogenous toxins being produced inside the body. As I mentioned above, I have had foamy urine since the onset of my illness which no one can identify despite having been tested for proteinuria about 5 times. I've mentioned this to several doctors and all of them have been mystified. It is not mild, either - sometimes it can be up to an inch or more thick and does not disappear for a long time. I suspect it is something being produced in my gastrointestinal tract. This could be happening to you, but it is easier for me to see because I am male. I am currently embarking on testing with a functional medicine practitioner to see what we can find.

    You mention you have sinus issues, which may point you in a possible direction as Dr Brewer in the US has recently published a paper theorising that ME is potentially caused by a fungal infection in the sinuses which releases various mycotoxins into the body. He is apparently getting good results by treating this and will release a paper documenting his progress with patients later in the year. There is a lot of info on this in the Mycotoxin thread in the research area.

    Apart from Wilson's Disease, I have ticked off every cause of elevated ALT that comes up on medical sites apart from toxins. I really doubt I have Wilson's Disease as I have none of the symptoms, though I am testing for it shortly (the lab wouldn't test until now as it is so expensive). I'm not sure I fit the profile of TB as i do not have any respiratory symptoms whatsoever and also had a chest x-ray at disease onset. My CRP and ESR are also beautifully low.

    I have had very foamy urine this month compared to most and get my ALT retested on Monday. I anticipate that it will have gone up again. If it hasn't then it throws a spanner in the works of my theory. I will report back.

    EDIT: Just to add, I can also tell when I am going to get foamy urine by judging how I feel. Just then I felt really dizzy and spaced out when I went to use the toilet and, lo and behold, my urine was really foamy. I can guess whether it is going to be foamy or not nearly every time.
     
    Last edited: Oct 2, 2014

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