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ME/CFS: A disease at war with itself
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Failing 'normal' lab tests now. Any ideas?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by justy, Feb 12, 2013.

  1. justy

    justy Senior Member

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    Hello all, My recent few visits to my GP have thrown up some random abnormalities in regular NHS blood tests that have my GP scratching his head. I don't have the levels yet - waiting for the surgery to send them to me, i'll add the values and ranges when they come.
    I am also still waiting to see the gastro (suspected gastritis on omeprazole for 9 months now!!!) and now waiting to see rheumy as well. In terms of actual physically present history, i also have fibrosis on my lung.
    So far this is what is showing up:
    Ferritin low - 10 (this is with two years at least of iron supplementation.
    Iron - up from 10 - 11.5 after supplementation for months.
    Folic acid low
    calcium low
    Slightly raised ESR - firstly at 15, now at 17.
    Red Blood cells abnormally small, but at the same time i have too many RBC (my gp laughed and said perhaps they were balancing each other out)
    B12 high - 2,000 after couple years of daily injections (no longer doing them)

    From tests outside the NHS i also know i have deficiencies in:
    COQ10,
    Carnitine.

    I have from stool tests:
    Very Low Chymotrypsin
    High Betaglucoronidase
    Low cholesterol.

    My TSH has gone up to 2.39 - dont know T4 yet.

    I suppose the low calcium could be from the PPI i am taking - but i looked up the research on that and only one small study has ever shown it interfering with calcium absorption and only slightly and then only in elderly patients.

    Now my NHS GP feels that there must be something going on , apart from or instead of M.E as i'm not supposed to fail regular blood tests. He has reffered me to Rheumy - but says he may dismiss the ESR as its not that high - my RF and ANF were all normal.

    I thought it would be useful to see if anyone had any thoughts on these tests as a whole - looked at together. I cant make any sense of it.

    Thanks, Justy.
     
  2. pollycbr125

    pollycbr125 Senior Member

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    Ever since I became ill I have had numerous abnormal results infact the ME clinic were not going to take me until as if by magic I had one entirely normal set of bloods the only entire normal set of bloods I have had since becoming ill and hey presto diagnosed with ME .

    It seems that there is nobody in the UK capable of diagnosing what is wrong with a person if they have several abnormalities which do not correlate with criteria for specific illnesses even though you can tick almost all the boxes for another condition .

    I am beginning to think once labelled with ME in the UK the chances of geting accuratley diagnosed is virtually zilch .

    I also have hashimotos now and because I had an ME diagnosis I had to fight tooth and nail for that though antibodies don't lie so eventually I got diagnosed and treated though it has not made any difference to my health as I think I have too many problems going on all at once .

    ive found out there is pernacious anaemia in the family so im having bloods done next week but I wont hold my breath tbh . Ive just about had it with the NHS tbh infact im desperatley trying to find a private doctor who can diagnose connective tissue disorders as ive all the signs and symptoms have had from becoming ill , im pos on ANA test have been for a couple of years now and still I can't get diagnosed on the NHS .

    I think they like to label folk as having ME as a get out to deny treatment and benefits but surely it would make far more sense to give people accurate diagnosis , get them treated accordingly and perhaps people could get well enough to return to work etc instead of getting sicker and basically being left to rot . I just hope by the time I get diagnosed correctly any damage that has been done is not permanent .

    Good luck Justy I hope the NHS where you are , are better than round here
     
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  3. justy

    justy Senior Member

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    Hi Polly - it's shocking really that with a history of illness AND a positive ANA they wont do anyhting for you. Which CTD do you think you may have? All the literature i have read says that because CTD's can be so hard to diagnose. symptoms WITH a positive ANA should be considered a positive sign of a CTD etc - they can't just fob you off! i know they say many healthy people have ANA's. but the point is you have them and are ill.

    The NHS round my way is awful. I dont expect too much from them really.
    Will consider privaye appt at London Bridge Lupus clinic if needs be (although with a negative ANF, may be no point)

    All the best. Justy.
     
  4. rlc

    rlc Senior Member

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    Hi Justy, my suspicion is that all your problems are stemming from your gut, and that some condition is causing you not to be able to absorb multiple vitamins and minerals, which is making you sick.

    I can’t believe how long you have had to wait to see a Gastro, but I suspect they will find the answer. It always hard to know with multiple failed results, whether it is one illness causing them, or several. But assuming that there is one underlying cause, Diagnosis pro lists these six conditions as causes of low calcium, Ferritin, and Folate, they all effect the gut, see http://en.diagnosispro.com/differential_diagnosis-for/calcium-serum-lab-decreased-ferritin-folic-acid-folate/11935_11876_11929-153_153_153.html

    Tropical sprue is unlikely unless you have been overseas, see http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001320/

    Whipples is possible, but rare, it is more commonly found in people who work in agriculture i.e. gardening, see http://www.mayoclinic.com/health/whipples-disease/DS00757

    Sprue gluten enteropathy is celiac disease, from memory you had some borderline results for this but didn’t improve with avoiding gluten.

    Ulcerative Colitis is possible see http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001296/

    Malabsorbtion syndrome, refers to a whole lot of different conditions that cause malabsorbtion, a lot of which it is possible that you have, see http://www.webmd.com/a-to-z-guides/malabsorption-syndrome-topic-overview

    One of the diseases on this list of malabsorbtion symptoms is chronic pancreatitis, have you been checked for this? Because according to diagnosis pro only two conditions cause low Chymotrypsin they are chronic pancreatitis and cystic fibrosis see http://en.diagnosispro.com/differential_diagnosis-for/chymotrypsin-lab-decreased/45186-153.html

    Your low Carnitine and Co q 10, are no surprise if you are not absorbing nutrients, the more you test the more nutrients they will probably find your deficient in.

    The main things that are used to make healthy red blood cells are, Iron, Folate and B12, so no real surprise that your red blood cells are wonky, your B12 is probably the only thing stopping you developing extreme anaemia, and your B12 will be high, if you have some kind of malabsorbtion syndrome, because the injections bypass the gut.

    Your raised ESR is probably caused by whatever is happening in your gut area.

    Personally I think a good gastro, doing the right tests, and endoscopes and colonoscopy if necessary, is likely to find the answer, The only thing I can suggest is that you get your doctor to forward your latest test results to your gastro with a note saying the patient is obviously getting worse please hurry up. Or refer you as an emergency into the hospital. Or if you can afford it see a gastro privately.

    Be aware that Omeprazole has been shown to stop iron absorption in patients with iron deficiency see http://www.ncbi.nlm.nih.gov/pubmed/15455980 from memory you have been iron deficient long before you started taking this, so don’t let the gastro blame your low iron on Omeprazole!

    Sorry to hear that you have had to wait so long, it is truly ridiculous!!!

    All the best Justy, hope you get to see the gastro very soon!!
     
  5. justy

    justy Senior Member

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    Hi rlc - i was hoping you might show up! i cant work out how to use diagnosis pro, so your input is always very useful.
    Funnily enough, after posting this thread i got a call from the hospital to say the gastro clinic has a cancellation and they will se me today. I need to make absolutely sure he understands that i need biopsies taken to double check on the gluten front. I also desperately want to get off the omeprazole.

    I HAVE been overseas (to the tropics) but that was in between my first round with this illness and the second. i also was a gardener, but again, whiclst in remission.
    TBH i have no faith at all that a local NHS gastro will find the problem. My daughter had severe stomach pain, with rectal bleeding for two years constantly and the same clinic refused a colonoscopy. It was a lot of blood too - and daily. They did an abdominal ultrasound - found enlarged lymph nodes and said tshe had mesenteric adonitis (temporarily enlarges stomach lymph nodes that would go away and caused the pain. I made a complaint against the hospital which they dismissed. Despite having been ill, and even bedbound by her illness at the age of 15, she has never had a diagnosis (now 19 and doing a bit better)

    sorry way off topic there. Will report back on what he says.
     
  6. WillowJ

    WillowJ Senior Member

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    the problem with ME is that one does not necessarily fail 'standard' screening blood tests, however some of them, like ANA, are common for us to have come back abnormal (it's just that with abnormal ANA but not other signs and symptoms diagnostic for Lupus, RA, etc., they will say the ANA is insignificant or else do nothing but monitor you for developing a rheumatic condition they can understand)... but there can be complications from ME which could make us fail 'standard' blood tests. However it could also be something else (in addition or instead).

    I hope you're able to figure something out.
     
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  7. rlc

    rlc Senior Member

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    Hi Justy, hope all goes well with your gastro appointment!!!

    All the best
     
  8. taniaaust1

    taniaaust1

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    Hi.. much of your blood work is like mine.

    I too tend to get low Ferritin (thou I eat meat 3 times per day!!). My CFS specialist says he sees low Ferritin in a lot of his CFS patients and that its cause we are having to replace cells more then usual.

    Ive had abnormally low calicum come up on one of my tests last year (I drink a milk and have a daily yougurt and are a big cheese eatter so that really surprised me thou it concerned the dr who had another done... my next one was fine).

    I have issues with folic acid which caused my daughter to be born with a condition much like spinai bifida affecting her spine (as I have MTHFR polymorphism so have to take active folate etc).

    My ESR has gone up to 15 at times. For 7 years, with the ME mine went up about 1 number per year.. till it hit 15.

    *Note ive noticed there is a link between my ESR and my severe D deficiency. If my D deficiency spontanously improves a bit.. my ESR suddenly goes down. (I dont know if that was coincidental or not but my ESR never went down for 7 years till for some unknown reason my D went up.. or maybe my higher ESR was keeping my D down??). Anyway.. I suggest for you to watch to see if you have a similar connection between...when ESR goes up.. D goes down.

    ive no idea of the size of my red blood cells so cant comment on that.

    My B12 too was extremely high due to injections for years. A specialist actually has told me I wasnt using my B properly and has put me onto methylB12 inste do the hydroxl injections I used to take. My specialist wasnt concerned over my extremely high B12 levels as he says I need it.

    If Im remembering your case correctly.. you also get ME very much like what I had it like as far as symptoms go.
    ..............

    I thou have very high cholestrol which isnt controlable via diet... but high cholestrol runs in my family anyway so I suspect has nothing to do with my ME situation (I had high cholestrol as a teen 10 years before I got ME).
     
    justy likes this.
  9. justy

    justy Senior Member

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    Thanks for your responses, im a bit too sick today to update on gastro appt. Gone into a big crash.
    xx Justy.
     
  10. triffid113

    triffid113 Day of the Square Peg

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    All right, I have quickly scanned the above posts and see that no one addressed the P.P.I.! On the old B12 conference that was identified at THE cause of many people's neuropathies! Also you really want to get off that -- it is linked to contracting cdiffs in hospital (that's clostridium difficles), which causes many frail people to be sent to nursing homes and / or die. It is very hard to get off that though because it causes rebound acidity! You will not be able to absorb all sorts of minerals with inadequate stomach acid and that will affect yout thyroid which will affect your CoQ10 status (need thyroid hormone for that). Your TSH should be < 2.0 or else you are hypothyroid. I'm sorry I am out of time to say more. I love your pic. Is that the real you?
     
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  11. WillowJ

    WillowJ Senior Member

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    I didn't know that! thx for info.
     
  12. Valentijn

    Valentijn Activity Level: 3

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    Good point ... can't believed I missed that completely :p

    In my case I was on one for a year or two, but it turned out an asthma med that wasn't doing anything useful for me was causing acid reflux. My doctor never even mentioned it as a likely cause when I went in about the acid reflux :rolleyes: But when I tried going off the asthma med (Singulair), the acid reflex cleared up completely.
     
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  13. justy

    justy Senior Member

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    Thanks for the post. I am waiting for an endoscopy - i have a suspected stomach ulcer. I am very keen to get off the PPI - am slowly reducing at the moment 9although my gastro does not agree) PPI's are also implicated in pneumonia in at risk people, and as i have lung fibrosis i am at risk and HAVE had pneumonia since being on them.

    Having siad all of that, my mineral deficiencies predate my PPI use by a number of years. The calcium and folic acid deficiencies are new tho. My low B12 (now high after injections) also pre dates PPI usage.

    Thyroid - i agree its best if TSH is under 2.0 . My M.E dfoctor tried me on thyroxine 2 years ago and it had no effect at all on any of my smptoms and then on upping the dose to only 50mcg i developed hyperthyroid symptoms - but blood tests showed i was not hyperthyroid. The doc says she sees many PWME not able to tolerate thyroid meds. I just stopped them and it has never been mentioned again.

    I am hoping to collect my print out of all tests over last year and this on friday and then can sit down and really look at all the tests and compare over the year.

    The gastro appt went well - he was very interested in my other M.E type symptoms (i didnt mention M.E) he asked if i had joint problems - i told him i did. He mentioned coeliac and i said the blood test was within normal range (lab range 0-10, my result: 10) he said he definately needed to look iside my stomach, but i forgot to ask about biopsies - especially wehter they would do a biopsy to check for coeliac and also H pylori (negative blood test). He sent me off for yet another huge slew of blood tests - the whole works AGAIN!

    All the best, Justy.
     
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  14. justy

    justy Senior Member

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    Oops! forgot to say - yes that is me! i thought it would be nice to get a bit more personal with my profile. I love seeing the real people on here.
     
  15. triffid113

    triffid113 Day of the Square Peg

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    Sorry, my pics are never me, but in some way they are like me. I don't want discussions of the ways I am broken to get in the way of my career. The one time I put a real pic of me on the web I had all sorts of people I knew trying to friend me under my pseudonym, so it wasn't very discrete.
     
  16. justy

    justy Senior Member

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    Just an update to say i am now trying to contact a well known Doctor in the UK who deals with patients who may be Hypothyroid but are not showing up on labs.

    My latest lab tests showed my TSH was 2.39 (range 0.5 - 5.5), up from 1.5, although it has also been over 3 a few years ago. My Free T4 is now 12.6 (range 12 - 22) my T4 has never been this low - it has in the past been between 14.5 and 17. My hair has been breaking and falling out more recently, so if i can get proper diagnosis and treatment for my thyroid it may help my other symptoms?

    The surgery meesed up - i did ask them for ALL my results from 2012 and 2013, but they just gave me the last lot. Now i will have to ask again, which is always a hassle, as they're not keen on doing it in the first place

    All the best, Justy.
     
  17. rlc

    rlc Senior Member

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    Hi Justy, how long do you have to wait till you have your Endoscop? And did the gastro have anything to say about your reaction to worming meds?

    Up to date research says that the true reference range for TSH should be Between 0.4-2.5, so you are still just inside it, but some people do function better with a lower TSH. Has anyone ever checked your Iodine levels and tested for thyroid antibodies?

    For the thyroid to function at its best it needs to have the right amount of vitamins and minerals, your low in iron and folate which is probably affecting it, iron certainly does, see http://www.ncbi.nlm.nih.gov/pubmed/12487769 and you are probably low in lots of other things, because you seem to have some sort of malabsorbtion syndrome.

    Hair loss can be caused by both low iron and folate see http://www.webmd.com/skin-problems-and-treatments/hair-loss/news/20060516/hair-loss-may-be-iron-deficiency and http://www.livestrong.com/article/279440-folate-hair-loss/

    My opinion is that there is a good chance that your thyroid is being messed about by your deficiencies in vitamins and minerals, in which case no amount of thyroid medication will fix it, you need to find what is causing the deficiencies and get it fixed, then you will be able to see if symptoms and the thyroid levels improve. Hopefully your endoscope isn’t too far away, and they will find the cause of your low vitamins in minerals.

    I’d say it would be best to get that done first, adding thyroid medication, without knowing the cause of the deficiencies may complicate things more, maybe your gastro could advise you on the best course of action.

    Hope this helps

    All the best
     
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  18. taniaaust1

    taniaaust1

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    Hi justy. Im wondering what makes you think you are hypothyriod if your blood tests dont show it?

    My hair was all breaking..could never get it to grow past my shoulders due to the breaking (also coming out in clumps at times). I dont know what was causing the clumps to fall out (up to 17-19 hairs in one clump!! and had up to 5-6 clumps per day falling out) but it was something which used to come and for me (it would be doing that for a few weeks then stop). My hair breaking issue thou was fixed with taking selenium and now half way down my arm heading to my elbow and softer too. Maybe you are deficient in a mineral?
     
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Did you get your T3 and Reverse T3 tested?
     
  20. justy

    justy Senior Member

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    Yes, i am deficient in lots of things it seems. Perhaps the gastro will work out why. Due for the endoscopy mon 11th march - but i now have another lung infection so hopefully its cleared up by then, otherwise i will have to change the date.

    I wonder if i am hypothyroid because i have all the symptoms and my results are only just in range. My T4 has never been this low before and my TSH is rising a bit. The doctor i am hoping to see believes in treating based on symptoms rather than lab tests (which are not considered reliable by some) What is more important is what level MY thyroid should be at - unless you know your normal (when you are healthy) it is hard to say, based on a range made up of other peoples results, including those WITH thyroid disease.

    Interesting information about the mineral and vitamin deficiencies causing thyroid issues - i will bear this in mind. Unfortunately on the NHS as king questions of consultants and attmepting to get a discussion going is impossible - they don't like it and won't deal with you nicely if you make too much fuss. I imagine what will happen is what always happens when visiting an NHS consultant - they won't find anyhting abnormal on their very limited testing and history taking they do and consequently will lose interest. BTW my CDSA stool test came out negative for parasites - despite the improvement in symptoms on Mebendazole.

    Oh well - we can live in hope!
    All the best, and thanks for your input,
    Justy.
     
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