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Any Thoughts about these blood tests?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Aquila, May 31, 2012.

  1. rlc

    rlc Senior Member

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    Hi Goldenaquila, if your sleep patterns have been out of step it can mess with morning cortisol results, night shift workers get reversed cortisol results, however If you have had saliva cortisol levels and they were also low, because these are done throughout the day these test show that you have a problem with low cortisol, there is probably no point in repeating these tests, as you will most likely get similar results, which will only tell you your cortisol is low and won’t help with diagnosis, I think it would be a good idea to talk to your doctor about getting serum ACTH and serum Aldosterone done and get a ACTH stimulation test done as soon as possible! Because these tests will help to diagnose which of the many illnesses that cause low cortisol production is causing your problems. As Ema say’s low Cortisol is not something to fool around with, it can be very serious!!!
    It looks like you have got stuck in the trap with genetic testing for hemochromatosis, your test says you are a carrier for C282Y, but you may have other mutations that are not reported and never will be because they don’t test for them, leaving you with no clue as to whether you have it or not, What often happens is that people are what is called compound Heterozygous, which mean they have C282Y and one of the other untested genes and they act together to give the patient Hemochromatosis, the only way to get to the bottom of it is to do a trial of Phlebotomies to see if your iron levels will fall as recommended by the iron diseases association. Hemochromatosis can also affect thyroid function as well as causing cortisol problems; the iron can damage all the endocrine system as well as the heart, liver and many other organs.
    Personally I would start with getting your cortisol problems properly investigated, because taking out pints of blood if there is a major undiagnosed cortisol reducing disease may cause problems.
    Your folate levels are very much on the low side, there are lots of different reference ranges quoted on the web, some of which you are below some of which you aren’t, you blood results do not show signs of macrocytosis however this is a late sign of Folate and B12 deficiencies, and symptoms can occur before this happens. Folate deficiency symptoms can include fatigue, palpitations and brain fog, so it is possible that your low level of folate may be causing some symptoms for you, my personal preference is to be in the middle upper part of reference ranges for vitamins and minerals this takes away any chance that they may be causing any symptoms, If you end up having a trial of blood removal to see if you have hemochromatosis, because Folate is an essential part of making new blood your low levels of folate may rapidly become a problem, and you may rapidly become anaemic, so I think it would be a good idea to talk to your doctor about raising your folate levels.
    Have you been taking supplements with high levels of B6, because your levels are very high, too much B6 can cause peripheral neuropathy see [http://www.ncbi.nlm.nih.gov/pubmed/18754531]and [http://altmed.creighton.edu/pmdd/b6.htm]
    It looks to me that you have had a lot of testing, but some very important results have not been followed up on, these results indicate that you possibly have increased iron storage problems and problems with cortisol production, you need further testing to find out what diseases are causing these failed test results, although due to a lack of research and funding exactly, what ME is, is open to debate, you say you had a gradual onset, some doctors like Dr Byron Hyde believe that ME always has an acute onset and that the gradual onset patients normally have another findable known disease if they can get the right tests done by someone who knows what they mean, Addison’s and most of the other diseases that cause low cortisol, there is over forty conditions that can cause this, are gradual onset diseases, hemochromatosis is also a gradual onset disease. The other thing is that researchers have for a long time found anomalies in immune function tests in ME patients, this is why the name CFIDS (chronic fatigue immune dysfunction syndrome) has been used for the illness, however your Lymphocyte Immunophenotype tests are perfect! ME patient normally have problems with things like CD4and CD8 results etc. So can’t promise anything but it does look like there might be a chance that you are one of the lucky ones that doesn’t have it, and may have something treatable if you can get the right tests done.
    Hope this helps
    All the best
     
    Goldenaquila likes this.
  2. Aquila

    Aquila

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    My Ferritin was 183 2 years ago but I will get it tested again. Thanks again for your responses Ema and Ric and writing all that out! I'm very brainfogged so this is quite a short reply. I've got a doctors a apointment in two weeks so will have to wait till then to get tested. In the mean time I'm going to try hard not to get my hopes up too much.

    I also have a question. I looked up wikipedia and it says there are a number of genes that code for different types of Harmochromotosis http://en.wikipedia.org/wiki/Iron_overload type 1,2a,2b,3 and 4 etc. I have a 23andme account and you can look up the raw data. I wondered if it was possible to look up whether I have any of these other mutations. I've tried searching the net but I haven't found whether it's possible or how to do it. (edit I don't think i can do this unfortunatly)

    I was actually taking a folate supplement in a very low dose but I'll increase them and I'm aware of the B6. I'm taking L carnitine which helps a little with my chest pain and wasn't aware the tablets also include quite alot of B6 added to the L carnitine so I think that's why it's high. I've changed to a B6 less L carnitine. I also take a b12 supplement.

    Really interesting what you say about gradual onset I'm partiucarly interested in the genetic stuff as my dad has many of the same symptoms as me but at a lower level.

    Most of the tests here I did very recently without a doctor so I'm only just taking them to my GP but the Cortisol test was done over a year ago with alternative practiioner who didn't seem very interested it it. I will definately ask my doctor about it. I've always been concerned about low cortisol particularly because in the last 4 or 5 years I've had alot of the symptoms although before that I didn't. One of the reasons I have persue it in the past is that I heard that taking Cortisol doesn't help ME sufferes and the NICE report says GPs shouldn't test for it but I will definately ask after what you have said. I'll report back when I've seen the doctor.
     
  3. Valentijn

    Valentijn Activity Level: 3

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    Hi, rlc. The dark font you use isn't readable for people using a theme with a dark background.
     
  4. rlc

    rlc Senior Member

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    Hi Valentijin I wasn't aware that people were using a dark background, I usually write replies in a word document and then copy and paste and had noticed that since the change in the forum they are posting very differently, not sure how to fix this problem, could you please explain what i should be doing to make sure that people using a dark background can read what I have written. Thankyou!!!

    All the best
     
  5. nanonug

    nanonug Senior Member

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    I suspect that if you write your replies on notepad, you won't have this problem...
     
  6. uni

    uni

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    Agreed that your morning cortisol is too low! Definitely get tested on that. I can think you can qualify for secondary Adrenal insufficiency if Addison's is not the issue. That alone will cause a lot of your symptoms.
     
  7. rlc

    rlc Senior Member

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    Hi Goldenaquila, to the best of my knowledge the tests for other hemochromatosis genes are not available to the public anywhere, they have just been found by researchers and the public can’t get them done, the researchers believe that there are more genes to be found, so even if you could get every gene that has been found tested it still wouldn’t 100% rule out hemochromatosis.

    Your ferritin is above the level that the Iron overload diseases association recommend so you have failed that test as well, so it is a possibility. But like I say it would be a good idea to get the adrenal tests done first.

    Both Hemochromatosis and adrenal problems can run in families so interesting that your dad has similar symptoms, might want to get him tested as well.

    The NICE guidelines are rubbish and full of faults, excluding cortisol tests guarantees that people with adrenal insufficiency will get misdiagnosed with CFS, true treating ME patient with cortisol replacement hasn’t been massively successful in the past, but if it turns out that you have Adrenal insufficiency treatment with it can give you your life back in a matter of days.

    Looks like you might have solved the B6 mystery.

    Hope your doctor sorts’ things out for you soon!

    All the best
     
  8. rlc

    rlc Senior Member

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    Can people using a theme with a dark background see my last post ???????
     
  9. Valentijn

    Valentijn Activity Level: 3

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    Yup, looks fine! Thanks. :) Notepad is an easy alternative, like Nanonug mentioned. Another is to select everything you typed after you paste into the editor here, and click on the "Text color" button once or twice til it goes back to the default text color. If you set it to red or something then it's easy to see if you're on the default or not.
     
  10. rlc

    rlc Senior Member

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    Thanks Valentijin, think I’ve got it sorted now.
    All the best
     
  11. Valentijn

    Valentijn Activity Level: 3

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    ... It's black again! :p
     
  12. Aquila

    Aquila

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    Hi I have another question! Sorry for so many questions but I really appreciate it if someone could have a quick look over my workings to see if I've made a mistake. I was looking over my results and looking stuff up. I ike to understand things so even if stuff Is normal I was trying to work out what things do. Anyway this is what I found out.

    - First my Globulin value of 19 is low.
    - Second my IgM is is right at the top of the reference range and perhaps indicative of a current infection?
    - Third my total Immunoglobins are relatively mid range which is weird considering my Globulin so low. Something else must be very low.
    This is where I'd like someone to check my calculations before I ask my doctor about it.

    Total Globulin = Alpha 1 Globulin + Alpha 2 Globulin + Betta Globulin + Gamma Globulin

    My total Globin is 19 g/L
    Total Gamma Globulin = IgA + IgG + IgM + (The other Ig's are small and I don't have test results for so I'll ignore them for now.

    From test results my Total Gamma Globulin= 9.63+1.34+2.19=13.15 g/L

    If we rearrange the first equation we get:

    Total Globulin - Gamma Globulin = Alpha 1 Globulin + Alpha 2 Globulin + Beta Globulin

    19 -13.15 = Alpha 1 Globulin + Alpha 2 Globulin + Beta Globulin

    5.85 = Alpha 1 Globulin + Alpha 2 Globulin + Beta Globulin


    The referance range for Globulins when reckon broken down are follows:

    TopNormal Results

    • Total protein: 6.4 to 8.3 g/dL
    • Albumin: 3.5 to 5.0 g/dL
    • Alpha-1 globulin: 0.1 to 0.3 g/dL
    • Alpha-2 globulin: 0.6 to 1.0 g/dL
    • Beta globulin: 0.7 to 1.2 g/dL
    • Gamma globulin: 0.7 to 1.6 g/dL
    These are in g/dL no g/L like my results so I just need to times them by ten.

    So if we add the lowest reference range for Alpha 1 Globulin + Alpha 2 Globulin + Betta Globulin we get 1 + 6 + 7 = 14

    So the range for Alpha 1 Globulin + Alpha 2 Globulin + Betta Globulin is (14 - 25 g/L)

    Mine is 5.8g/L which is way below 14!


    This would suggest my Transferrin is very low and might explain my earlier result high result of Transferrin Saturation. (Transferrin is a Beta Globulin). It would also mean low Haptoglobin. After looking it up low low Alpha Globulins could mean Hemolysis. I don't know if my high MPV has any bearing on this.

    Clotting Cells
    PLATELET COUNT 193 x10^9/L 150 - 400
    MPV 12.4 fL 7 - 13

    Anyway this speculation and very possibly wrong as me hemo and red blood count are normal. I'm prettu brainfogged at the best of times so if someone could check my calculations which are very likely wrong I'd really really appreciate it! :)
     
  13. Aquila

    Aquila

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    I found this website in Britain which do tests for Type 2a and 2b and type 4 hemochromatosis. http://www.cuh.org.uk/addenbrookes/...s_labs/services_test/services_test_index.html I'm not planning on getting it done. Certainly not any time soon as it's pretty expensive but I thought I'd send the link.
     
  14. rlc

    rlc Senior Member

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    Hi Goldeaqulia, thanks for the link on Hemochromatosis genes, looks very expensive, and they don’t appear to be testing for all the known genes, more information on Hemochromatosis genes here if you’re interested http://ghr.nlm.nih.gov/condition/hemochromatosis like I say they don’t think they have found all the genes yet, so it may not be helpful anyway.

    here’s a website that I usually use to look up test results called diagnosispro it hasn’t been working due to maintenance since the start of our conversation, but has just started working again so I’ll show you what it says. Low TIBC means http://en.diagnosispro.com/differential_diagnosis-for/tibc-total-iron-binding-capacity-lab-decreased/10124-153.html Low TIBC plus high Transferrin Saturation means http://en.diagnosispro.com/differential_diagnosis-for/tibc-total-iron-binding-capacity-lab-decreased-transferrin-saturation-increased/10124_10555-153_154.html of these six possibilities, I don’t see how you can have Pyridoxine (B6) deficiency anemia because you have an excess of it, Aplastic and sideroblastic Anemia should have shown up on your CBC, the other two are liver diseases have you had liver function tests done? Hemochromatosis can also cause failed liver function tests.

    Although Ferritin reference ranges vary a lot from lab to lab your level is above what the iron overload diseases association recommend so if I add that you get http://en.diagnosispro.com/differential_diagnosis-for/tibc-total-iron-binding-capacity-lab-decreased-transferrin-saturation-increased-ferritin-serum/10124_10555_11876-153_154_154.htmlSideroblastic anemia is probably ruled out but double check with your doctor, which just leaves Cirrhosis Portal and Hemochromatosis, when I add low cortisol you end up with just Hemochromatosis see http://en.diagnosispro.com/differential_diagnosis-for/tibc-total-iron-binding-capacity-lab-decreased-transferrin-saturation-increased-ferritin-serum/10124_10555_11876_11102-153_154_154_153.html

    However although Hemochromatosis can damage the adrenal glands causing Addison’s and low cortisol it is a reasonable rare symptom of hemochromatosis, and it is possible that you have advancing hemochromatosis and something else, if I just put in low cortisol it gives it gives 47 possible causes see http://en.diagnosispro.com/differential_diagnosis-for/cortisol-lab-decreased/11102-153.html so you are going to need further testing to find out what is causing it, the symptoms of both Hemochromatosis and adrenal insufficiency are very similar to ME, and it is possible that you have both, so your doctor has a bit of work to do to find out what is going on.

    Regarding your globulins, sorry don’t know too much about that, so best to ask a doctor, all your results are in the normal range if towards the upper and lower levels for some, you say The other Ig's are small and I don't have test results for so I'll ignore them for now. I don’t know for sure but maybe these results that you don’t have effect the end calculation somehow. Any opinion I give would only be guessing, so best to add it to the list to ask a doctor about.
    All the best
     
  15. Aquila

    Aquila

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    Thanks Ric. That's a great site! Is your username Ric or RLC I can't tell? Your seem to know alot about M.E and related diseases. Do you have M.E? I think the Cortisol could just be burn out. I was very stressed and very sleep deprived on and off for 8 years and pushed my health alot. Then massively crashed 4 years ago. I was ill before all this but I didn't have many of the low Cortisol symptoms weirdly I was able to do exercise but had the flu like syptoms, dizzyness and brain fog. Anyway I'm going to resist posting anything else or looking stuff up before I see my doctor and then I report back.

    As for the Globulins I think I've made something very simple look complicated! Basically my total Globulins are low. Globulins are made up of three things. The biggest is Immunglobulins. I know my Immunoglobulins from the test and my total Immunoglobulins are normal so the other stuff which makes up my Globulins must be really low. The other stuff is Alpha and Beta Globulins. When i do the maths and look at rerefence ranges I realised these must be really low. The other Immunoglobulins wouldn't change this as they are about 0.1% of total each or less. I just added the note for completeness sorry that wasn't very clear.

    I'm thinking of getting a protein Electrophoresis test to check this out. But I will ask my doctor about this too and report back. I hope you have a good day!
     
  16. rlc

    rlc Senior Member

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    Hi Golden aquila, it's RLC with an L, but I had noticed that it is hard to see, and quite a few people call me Ric, which I don't mind at all as long as I know there talking to me. To the best of my knowledge I have had ME for twenty years, but without a hundred percent full proof diagnostic test there is always some doubt, because I've had some rubbish doctors in the past, I have had to turn to the net to find out information on other diseases that should be ruled out and because of that I've ended up knowning quite a bit about certain diseases or at least how to quickly find the information on them, so if I see people posting about things I know I try and help them out.

    The way you discribe you discribe having symptoms for years and then crashing would fit with either adrenal problems or Hemochromatosis which progress slowly until everything falls apart.

    Best of luck with your doctor, looks like you might need to make a double apppointment with the amount of things you have to discuse, look forward to hearing your next update.

    All the best
     
  17. eve789

    eve789

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    That anion gap is super high! I'm not sure what fasting has to do with it. If anything, if there's a contribution to the acidosis from bacteria in your stomach, then it should be lower when fasting.
     
  18. Aquila

    Aquila

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    Hey Eve do you know what a high Anion gap would mean? I had pretty much ignored it minus the note.
     
  19. Aquila

    Aquila

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    I find out my blood tests results in a week but in the mean time I just found some more tests I had done ages ago. I didn't feel like I had that many tests but over so many years they add up although 90% are from one batch. Anyway these are the ones I had done as I can no longer edit the orginal post. They are all pretty normal.

    URINE CATECHOLAMINES:
    24 hour urine volume 4.200 litres (0.8-2)
    Urine Noradrenaline 243 nmol/24hr < 570
    Urine Adrenaline 78 nmol/24hr < 100
    Urine Dopamine 1490 nmol/24hr < 2
     
  20. roxie60

    roxie60 Senior Member

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    cant find a link to your homepage, would like to know what you think are the right tests.
     

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