1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

blood tests

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Arizona, Aug 2, 2013.

  1. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    I have been on Fred's protocol for a while now but I am still getting symptoms. I am starting to think that they may not be related to b12 after all.

    My symptoms include-
    severe brain fog
    headaches
    muscle burning (especially in legs)
    dizzy turns
    feeling off balance
    generel tiredness

    I have had a lot of blood test which have all came back normal. I'm pretty sure my doctor thinks it's all in my head. I was hoping that if I posted the results someone would be kind enough to give me a second opinion and let me know if there are other tests I should ask for.

    Rheumatoid factor- 9.7 Eu/mL (0.0-20.0)
    Eryhrocyte sedimentation- 5 mm/hr (1-20)
    Serum vitamin B12- >2000
    Serum folate- >20
    Serum ferritin- 53.7 ng/mL (14.0-186.0)
    Serum creatine kinase level- 46U/L (25-200)
    serum alanine aminotransferase level- 23 U/L (5-55)
    serum alkaline phosphate- 44 U/L (30-130)
    serum bilirubin level 5 umol/L (0-21)
    Serum albumin 45 g/L (35-5)
    Serum sodium 139 mmol/L (133-146)
    Serum potassium 4.5 mmol/L (3.5-5.3)
    Serum chloride 102 mmol/L (95-108)
    Serum bicarbonate 26 mmol/L (22-29)
    Serum urea level 4.2 mmol/L (2.5-7.8)
    Serum creatinine 73 umol/L (60-100)
    Estimated egfr >59
    Plasma C reactive protein <6
    Free T4 level 18.5 pmol/L (9.0-21.0)
    Serum TSG level 1.38 mU/L (0.20-5.00)
    Serum cortisol 617 nmol/L (280-720)
    Anti-nuclear antibody level- Negative

    I just don't understand how I can feel so bad but all my tests are normal. I'd love to know if there are any other tests I could ask my doctor for. I really want to get to the bottom of this.
    golden likes this.
  2. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

    Messages:
    392
    Likes:
    208
    I know very little about medicine, so I can't comment on your test results.

    I have some of your symptoms, but not all of them, and I have other symptoms that you didn't list. What I will suggest for your consideration is some tests that I had recently which all came back abnormal for me, which could very well indicate why I am experiencing some of my symptoms:
    Vitamin D
    DHEA-S
    MCV
    Reverse T3
    Cancer tumor marker test
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,126
    Likes:
    4,707
    Albuquerque
    Arizona

    While you have had a lot of tests you haven't had the ones that typically come back abnormal for ME/CFS patients. There have been threads on which tests are helpful to us. You can search the site for such posts here:
    http://forums.phoenixrising.me/index.php?pages/google-search/

    For instance you have not had immune panels, gut tests, inflammatory cytokines and tests for a variety of pathogens that are found in this illness.

    Best wishes,
    Sushi
    SOC likes this.
  4. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    Thanks for the suggestions. I will have a look. I wonder if it would be a good idea to get a 23 and me test done?
  5. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi Arizona, celiac, lyme, serum glucose, glucose tolerance test, full iron studies, stool tests for parasites and vitamin D are not on the list of tests that you have had done, if you are having dizzy spells you should ask your doc to do the rhomberg test on you it can help to determine the cause of dizziness.

    Although you may think that the tests you have had done is a lot, it isn't, there are many more tests that can be done it all depends on symptoms and history etc

    Hope this helps

    All the best
  6. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

    Messages:
    392
    Likes:
    208
    I think it's a good idea generally, at only $99.

    I don't know if it would help you determine what is causing your current symptoms.

    However, it might explain why Freddd's protocol has not been effective for you -- you might have some mutations that his particular system would not be good for.

    Have you considered Rich's simplified methylation protocol? (Links to the basics of it are in my big list of methylation links, hyperlink to that is below my signature line -->)

    It can take 8-10 weeks to get the 23andMe results back.

    ----
    Have you had an opthalmology exam in the last couple of years? Is your vision okay?

    ----
    Can you get a second opinion from a different doctor?
    Valentijn likes this.
  7. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

    Messages:
    392
    Likes:
    208
    I've just been looking up the hormone prolactin tonight and I saw this list of symptoms for a problem with the pituitary gland:

    "More severe hypopituitarism can lead to hypothyroidism or abnormally low cortisol levels, causing:​
    • Appetite loss
    • Weight loss or gain
    • Fatigue and decreased energy
    • Decreased mental function
    • Dizziness
    • Joint pain
    Other symptoms​
    • Headache"
  8. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    My doctor has decided to refer me to the hospital to get more tests. I don't know what department she is referring me to but she said it is to see if they can think of anything she hasn't.

    After reading this forum I can see that there is a lot more tests that could have been done. It's amazing to me that all you guys on this thread seem to be more knowledgeable about these things than my GP.
  9. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    I haven't considered it but I will have a look into it.

    I wear glasses so I have an eye test every 1-2 years.

    My thyroid test was normal and my cortisol level was also within range.

    Thanks very much to everyone for taking the time to make suggestions. It is very much appreciated.
  10. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

    Messages:
    392
    Likes:
    208
    I only see one of the thyroid markers listed in the tests you had done, when there actually about 6 or so that you need to look at before knowing whether your thyroid is okay.

    You also checked your cortisol once, at one time of day, and don't know how it varies over 24 hours, which is the important thing to know about cortisol.

    You can learn more about those issues, if you wish to, online. You might want to ask for more thorough testing in those areas.

    It's good that you will be in the care of a hospital specialist and hopefully they will find what is wrong. :)

    ---
    Although it's frustrating and even now a bit frightening not to have medical insurance or a doctor to turn to, I see so many people who describe their doctors as not having much of a clue, and not really being curious about their health difficulties, and I realize that probably I would have ended up doing a lot of research and treatment by myself anyway, even if I did have decent medical care. I am grateful for all the information available online, and on forums such as PhoenixRising, where people are just so well-informed and helpful.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,126
    Likes:
    4,707
    Albuquerque

    Before you have your hospital appointment, study the testing suggestions that have been made here on the forum. We are indeed, collectively more knowledgeable than most GPs. What you are getting here on the forum is not only the thoughts and experience of many knowledgeable patients, but the thoughts and experiences of some of the best doctors who treat this illness--as we, as patients, are sharing what we have learned from them, and what they have tested us for that has come back abnormal, etc.

    Testing for pathogens with the best tests available is very important. As are some of the other tests suggested.

    So it is pretty likely that most hospital docs won't be up to speed on this illness either....very sorry to say. :(

    Best wishes with this,
    Sushi
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    4,958
    Likes:
    5,504
    USA
    I suggest you read The ME/CFS Primer for Clinical Practioners. There are lists of tests, and a lot more, in it. It's not perfect, IMO, but it's probably better than anything and doc at the hospital will know. It doesn't say enough about immune dysfunction and herpesvirus (EBV, HHV-6, CMV, etc) as I think it should since those are big issues for me. ;)

    Don't take it too the docs expecting them to read it. It's far too long, so they'll ignore it. Find the parts you want them to focus on and highlight them. You might even print out the Diagnosis Worksheet part (Chapter 4, I think). If I were in your shoes, I'd make sure they saw the lists of suggested tests and the differential diagnosis section.
  13. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    This is what is so frustrating! Shouldn't my doctor know that?

    Thanks for all the advice. I'm sure my hospital appointment won't be for a while so I will have plenty of time to do some research. I would find all this a lot less overwhelming if it wasn't for the brain fog!
  14. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Hi Arizona;
    I don't know if you're still taking the same supps. as when you first posted,so I'll guess what may be causing some of the symptoms.

    I do see that the folate is >20 ng/ml. Labs vary in ranges. My lab range is 3-21 ng/ml. I've found that when my folate is elevated, I'll have strong headaches, and some muscle pain.

    Recently, I began to have headaches from taking zinc. ( This was quite a disappointment.) But, even though I was taking 15 mgs. daily, I must have depleted copper, because, when I added copper, it relieved the headache. So, for now, I'm going to stop zinc/copper supps., and eat more foods with them.

    In the past, I wondered if the high dose of B12 I take was causing problems. It was not. ( I also have an elevated B12.)

    I've had side effects from taking cod liver oil, high vitamin A, and high vitamin D. ( many people don't, but it could be a problem.)

    Many members here have stopped headaches from taking fish oil. ( I see you were taking an omega 3 supp.)

    I noticed that your alkaline phosphatase is in the low normal range. It could mean nothing, but here's a link that lists some possibilities.

    http://www.drkaslow.com/html/alkaline_phosphatase.html
    Valentijn likes this.
  15. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    I've actually had to cut down on my supps because they were making me feel really sick!

    I've went from-

    1 x l-carintine fumerate
    1 x Same
    1 x TMG
    2 x metafolin
    1 x B-complex
    3 x omega 3
    3 x vitamin c
    2 x Zinc
    1 x Calcium/Magnesium
    1 x vitamin A
    1 x vitamin D
    1 x vitamin E
    1 x alpha lipotic acid
    1 x anabol naturals dibencoplex
    1 x potassium
    5 x enzymatic therapy b12 sublingually

    to-

    1 x l-carintine fumerate
    1 x metafolin
    1 x B-complex
    1 x omega 3
    1 x vitamin c
    2 x Zinc
    1 x Calcium/Magnesium
    1 x vitamin A
    1 x vitamin D
    1 x vitamin E
    1 x anabol naturals dibencoplex
    1 x potassium
    5 x enzymatic therapy b12 sublingually

    When I had my blood tests done I didn't take any supplements for a week. My B12 and folate were still very high so I'm obviously absorbing them well.

    I had a look at that link and-

    A decreased serum alkaline phosphatase may be due to:
    • Zinc deficiency.
    • Hypothyroidism.
    • Vitamin C deficiency/Scurvy.
    • Folic acid deficiency.
    • Excess Vitamin D intake.
    • Low phosphorus levels (hypophosphatasia)
    • Celiac disease.
    • Malnutrition with low protein assimilation (including low stomach acid production/hypochlorhydria).
    • Insufficient Parathyroid gland function.
    • Pernicious anemia
    • Vitamin B6 insufficiency
    This all might be worth mentioning to my doctor so thanks very much for the suggestion.
  16. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

    Messages:
    392
    Likes:
    208
    I think that some of the B12 and folate blood tests don't look at what is absorbed, but what is floating around in the blood. They don't show you what your body is taking from the blood and putting to work inside the cells. You might want to look into the various B12 and folate tests that are available, to double check that the ones you had can be relied upon.

    I know that Chris Kresser (naturopath, chriskresser.com) and many others say that the B12 test isn't very informative, so they look at MMA methylmalonic acid and homocysteine instead. More on that in these two links:

    Chris Kresser
    B12 Deficiency, first article
    http://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences

    Chris Kresser
    B12 Deficiency, second article with simple methylation protocol
    http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency
  17. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    Thanks Bluebell. I will add this to the list of things to mention to my doctor when I get my referral.
  18. Arizona

    Arizona

    Messages:
    30
    Likes:
    5
    I finally got my letter of referral in from the hospital today and it is for the infectious disease department!! I'm really struggling to understand why my GP would refer me there. I'll probably try to make an appointment to speak to her about it but considering my symptoms does anyone have any ideas?

    My symptoms include-
    severe brain fog
    headaches
    muscle aching/burning (especially in legs)
    dizzy turns/feeling high
    feeling off balance
    ear popping
    general tiredness
    reduced hand function/tremors
    irritable bowel syndrome
    interstitial cystitis
    clicking jaw
    slight skin rash/itchiness on chest and neck

See more popular forum discussions.

Share This Page