The 12th Invest in ME Conference, Part 1
Over the Hills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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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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    @Katyw
    @Jonathan Edwards

    I think you will both be very interested in this! My ALT has just come back and it has skyrocketed to 300something. This is more than double what it has ever been before. The only medication/supplement I have been taking for a while now is amiltriptyline which shouldn't cause these kinds of results. Obviously I never touch alcohol.

    As I indicated in my above post, the prevalence of my foamy urine over the last 5 or 6 weeks means that I am not at all surprised that my levels have risen, though I am surprised it has been so dramatic. I cannot hand on my heart say that the foamy urine and elevated ALT are connected, though I am becoming more and more convinced that they are, and that potentially my illness is related to an ongoing and low-level poisoning. This is strengthened when one considers that the initial onset of my foamy urine was associated with 'die-off' from from a candida diet which I consider to be the beginning of my acute illness.

    I feel it is a strong lead that I am going to pursue doggedly. Having said that, I am going to tread with utmost caution as any rash action on my part has the capacity to make me much worse. I need a lot more information.

    My GP was unable to comment one way or another (the mark of a good doctor is the ability to admit ignorance) and is now referring me onto a hepatologist who he thinks very highly of (my GP doesn't hand out praise easily). He suggested that I bring this up with him. I have also got my nutritional doctor in the loop and she is doing NutrEval testing which includes looking at the organic acids and dysbiosis markers within urine.

    Katy, given the continuing uncertainty over what is causing my elevated ALT, I would be hard pushed to say we are experiencing the same thing. Remember that niacin can cause elevated ALT so if you're meeting dead ends I would suggest you consider the supplements you're taking. It will be a while until I can update any further on this, but I will definitely keep you in the loop and, who knows, maybe you will be able to trace my footsteps and get appropriate testing should I find anything juicy.

    Professor, I didn't copy you in on this to get your insight as I don't like to impose on you like that. More I just wanted you to see this as it is so utterly bizarre!
     
  2. Sidereal

    Sidereal Senior Member

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    @Cheesus, I have nothing useful to contribute but I just wanted to say I'm following this thread with interest. I have had occasional mild elevations of liver enzymes over the years, though they have always come back down. Also have persistent hyperbilirubinemia. Have seen a hepatologist. He thought it was "post-viral fatigue".

    Best of luck chasing down this lead.
     
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  3. wastwater

    wastwater Senior Member

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    I usually have mildly elevated ALT in my case it maybe due to antidepressant use is what i thought
     
  4. Katyw

    Katyw

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    Hi @Jonathan Edwards

    Is it possible to get some advice from you (or anyone else who can pitch in)

    As you know from the above post-I've had a abnormal blood tests since being ill. I was diagnosed with ME/cfs and have since developed POTS, hypothyroidism. Im not confident with the diagnosis of ME/cfs. I have been responding well to antibiotics as I had high levels of Cpn and mycoplasma. I had my liver scanned and it was all good. Here is a list of my last blood tests which were abnormal and have always been the whole 3.5 years of being ill.

    Total white blood count 13.7 (4-11) always between 12-15
    Serum ALT iu/L 46 (0-35) ranging 40-50s
    Lymphocyte count 5.8 (1-4)
    plasma CRP 28mg/L (0-10)
    ESR rate 41mm/hr (1-20) always in the 40s
    plasma viscosity 1.89 (1.50-1.72)
    igA 4.44 g/l (0.80-2.8)
    complement C3 1.80g/l (0.75-165
    complement C4 0.63 g/l (0.14-54)
    CD3/CD4 (absolute) 1.553 (0.3-1.4)
    CD3 (absolute) 2.288 (0.7-2.1)
    CD3-/CD56+16 (nk cells) 8.0 (7-31)
    Mean cell volume 83fl (84-102)
    Mean cell haemoglobin 27.8pg (28-33)
    serum b12 919ng/l (220-700)
    Creatine 55 umol/L (60-120)
    serum folate >20 ug/l (2.6-17.3)

    Any input would be appreciated. I'm thinking of taking this up seriously with the NHS as they have just left me and I feel further immunology testing would help in my case. Are there any further tests that I could request? Based on those abnormalities.

    K
     
    Last edited: Mar 16, 2017
  5. Cheesus

    Cheesus Senior Member

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    @Katyw

    I can't help you with pretty much all of that, other than to say your ALT is only slightly outside of the range. Most doctors would not batter an eyelid at those level.
     
  6. Katyw

    Katyw

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    @Cheesus

    I understand what you mean but I'm talking about these results not being inline with me/cfs. In the U.K. this illness is diagnosed by process of exclusion. Usually with normal blood test results and nothing else showing. With the level of debilitating symptoms I have- surely there is an argument here for in depth investigation?


     
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  7. Cheesus

    Cheesus Senior Member

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    Oh absolutely. I think you should push for it. That is a long list!

    However it is not necessarily true that none of us have abnormalities. I had liver function abnormalities that have gone unexplained, but I am fairly certain I have ME.

    But by all means, kick some NHS arse! I really hope they find something that is treatable.
     
  8. Katyw

    Katyw

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    Thanks @Cheesus

    I will try and kick some arse! I know many people have abnormalities but I was meaning in the warped minds of the NHS-they don't think this. The thing is- anything that they don't understand they shun. The fact that I feel much better on antibiotics shows something.
    K
     
  9. Cheesus

    Cheesus Senior Member

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    @Katyw

    Yes, I understand you.

    Good luck! The forum is on your side.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member

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    All that I can say is that a raised CRP level is not explained by ME and needs careful investigation. There is a potential confusion because quoted levels differ by a factor of ten between USA and UK. The level may be quoted as mg/L or mg/dL. I forget what the UK standard is but normally one would consider a level above 3 as suspicious and above 5 as abnormal. I am fairly sure these are in mg/L. In that context 28 is far too high and in all cases I have come across indicates a recognisable diagnosis that is not ME. The other tests you mention are not specific enough to be very helpful. If I knew a CRP was 28 I would be more interested in details of symptoms than these tests or any other tests until I had some clinical clues.
     
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  11. charles shepherd

    charles shepherd Senior Member

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    Regarding a significantly raised CRP and/or ESR test result in relation to ME/CFS - this is a fairly common question to the MEA

    This is my standard reply:

    The CRP (C-Reactive Protein) blood test is a very useful but non specific marker for infection or inflammation in the body

    If the level is raised, it suggests that there is some form of infection or inflammation occurring somewhere in the body - even though there may not be any obvious symptoms or signs that would help to demonstrate the location in the body where this is occurring

    The test is not therefore diagnostic of any particular infection or inflammation - as there are many possible explanations for a raised CRP level ranging from specific infections through to inflammatory bowel disease, arthritis, and autoimmune diseases such as lupus/SLE

    The level can also be raised in the later stages of pregnancy, when taking the contraceptive pill or HRT, and with obesity

    This test, or a similar one called the ESR (erythrocyte sedimentation rate), should ALWAYS form part of the raft of blood tests that are always checked when a diagnosis of ME/CFS is being made or considered

    The CRP test rises and falls faster than the ESR

    In the case of ME/CFS, both the CRP and ESR test results should be within normal limits - but there are some circumstances (eg a recent infection) where it might be raised

    If the level is slightly raised, the test will probably be repeated

    If the level remains raised, or is significantly raised, this should lead to a thorough re-evaluation of the clinical symptoms and some further investigations to try and find the cause.

    I assume from what you are saying that consideration has been given to conditions that are sometimes misdiagnosed as ME/CFS, and which do cause an elevation of the CRP level - lupus/SLE for example.

    Where the CRP level remains persistently and significantly raised, and a GP cannot find a satisfactory explanation, referral to a hospital specialist will probably be necessary.

    The use of ESR and CRP tests in ME/CFS are described in the Investigation section of the MEA purple booklet:
    MEA purple booklet: http://www.meassociation.org.uk/?p=4038

    More detailed information on the CRP test here:
    http://labtestsonline.org.uk/understanding/analytes/crp/tab/test/

    More info on ESR test here:
    http://labtestsonline.org.uk/understanding/analytes/esr/tab/test/

    Dr Charles Shepherd
    Hon Medical Adviser MEA
     
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  12. Katyw

    Katyw

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    Thank you for your reply @Jonathan Edwards

    I agree and feel that this level of CRP is too high. Especially because my main symptoms are not fatigue. I feel severe malaise, pain, chills, heart and eye problems. I keep getting shrugged off and don't know what to do. My father has reactive arthritis but I don't seem to have the same symptoms.

    Thanks for your reply @charles shepherd I have had constant high CRP and ESR since being ill (3.5 years also) I have since developed issues with my heart, eyes and skin. I don't suffer with fatigue I just feel poorly. I was sent to rheumatologists and immunologist (once) at the start of my illness but they only tested basic things. I think the issue is, the GP doesn't know who to refer me to. Also, because I've been given the diagnosis of ME I have just been told to stay at home and rest. My symptoms are not consistent with ME and I don't feel fatigued. I don't know where to turn next.
     
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  13. charles shepherd

    charles shepherd Senior Member

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    From what you say, I feel that your concerns and queries about both diagnosis and management are fully justified

    So I think it would be helpful if you could get your GP to refer you to a specialist who knows about both ME/CFS and immunology - unfortunately, there aren't many of them!

    You don't say where you live but if you are in Southern England I would suggest that you see if you could get a GP referral to see Dr Amolak Bansal (Immunologist at St Helier Hospital in Surrey)

    There is an NHS ME/CFS service at St Helier but Dr Bansal also sees private patients

    Dr Bansal is very kind and very thorough…….

    Dr Charles Shepherd
     
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  14. Mtb1966

    Mtb1966

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    Hi @Katyw

    I noticed some similarities between your results and mine. Like you I'm searching for answers but thought it might be useful to compare notes at least.

    My ALT was fine in tests 2013-2015 but became elevated (59) last summer and subsequently rose to 73. This coincided with taking antivirals, valtrex preceded by a period taking olive leaf extract. I understand valtrex is similar to acyclovir so its possible this could explain the ALT. I stopped taking the valtrex in December and my repeat test in February showed ALT lower at 59. My liver ultrasound was also normal and other liver related blood tests showed no issues. That said I often feel my liver is enlarged. A few years back an acupuncturist said it felt hard, doctors though don't seem to want to actually touch patients.

    My CRP has been normal apart from a test in 2014 when it was 13 and ALP was also elevated. No explanation was offerred as they returned to normal but I have long suspected EBV re-activation as the cause of my permanently active immune system.
    Have you been tested for EBV or CMV?

    One constant in my tests which also applies to you is high serum iGa (6.11-7.27) across 5 tests spanning 3 years. This is supposedly an indicator of chronic infection but they haven't found one and my immunologist ruled out auto-immune diseases. If it simply indicates an immune system "stuck on" I don't get why a significant number of other ME sufferers don't also report this.

    Hang in there, I hope you get some answers soon.

    M
     

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