1. Patients launch $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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

A great starting point for M.E. tests......

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Goodness to M.E., Aug 4, 2013.

  1. Ema

    Ema Senior Member

    Messages:
    3,165
    Likes:
    3,273
    Midwest USA
    The top of the range should be 3.0 according to the AACE. Some associations believe it should be no more than 2.5. That's still too wide in my opinion but...

    http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm

    Ema
    Izola and SanDiego#1 like this.
  2. Goodness to M.E.

    Goodness to M.E.

    Messages:
    39
    Likes:
    64
    Adelaide
    SanDiego#1 likes this.
  3. Goodness to M.E.

    Goodness to M.E.

    Messages:
    39
    Likes:
    64
    Adelaide
    I 'think' (just my thoughts) what Mirza is trying to get across is if you read his 2 papers I've posted:

    1. CFS is a waste basket diagnosis and not in his vocabulary because doctors are only spending 10 minutes in a consult and therefore not spending the time to explore other possible causes of unexplained fatigue and in doing so give the diagnosis of CFS and offering, GET, CTB and a prescription for anti-deppressant, pain killers, sleeping tablets that are probably unnecessary and so wrong (how can they help if you have evolving hypothyroidism or diabetes for example) etc..

    2. M.E. and C.F.S. are not the same illness/dis-ease (and there is no such illness as ME/CFS in any current WHO-ICD 9 or 10, (my inclusion) and M.E. is not being diagnosed because the various illnesses/dis-eases that makeup M.E. are not being tested for, or are only having the basic tests where the ranges are so out-of-date that illnesses/dis-eases associated with M.E. are being missed until many years later when the suffer become so chronically ill and in crisis, unable to work and often by then the damage has been done and it is too late to reverse the situation to regain a good level of health.

    3. Mirza is also saying that for M.E. a suffer will probably have a 'combination' of the illnesses and not necessarily all or at the same time.

    4. For others, just a missed diagnosis.

    5. In my particular case, the out-of-date ranges is why for 3 years I ran around and tried everything including 'pushing-through' because the so called experts in the field in South Australia, who undertook no tests, diagnosed me with CFS, told me to exercise, take anti-depressants, and CBT.

    Not until I found my current integrative doctor who starts with a 90 minute consult and undertook a range of specific tests, history, symptoms etc. did we find that I had, pyroluria, Vitamin D deficiency, pre-dibeties (and nocturia), Vitamin 12 deficiency, adrenal deficiency (Addison's disease) hypothyroidism (Hashimoto Disease). By that time my body was in crisis and I now have cardiac problems, POTS, ankle oedema, PENE, and constant weakness in arms and legs.

    Not only during this 3 years did I probably loose some $100,000 in lost wages and another $50,000 in medical costs and treatment over the last 5 years, 12 months ago I became so chronically ill, I was diagnosed with M.E. via the new ICC Primer 2011, I can no longer work and am mostly housebound with my feet above my heart resting to minimise my symptoms for most of the day and night. However, I'm very grateful that I can now care for myself, live independently and have a group of supportive family who are more than willing to help when times are not so grand for me.

    As for the information regarding the testing ranges etc. I guess that will need to wait for another 'good' day of internet searching which is how I came across the 2 articles that I have posted in the first instance (As a newie I wanted to get the testing information out so yes, I did duplicate but I think that has now been corrected).

    Who knows, had I had access to this information for testing 5 years ago, maybe my health and life may have had a different outcome than today and if this information can minimise the suffering and confusion and assist in a better outcome for another, then my work is done! My very best regards to all, as always!
    SanDiego#1 and golden like this.
  4. golden

    golden Senior Member

    Messages:
    1,649
    Likes:
    921
    Clear Light
    goddness to me-

    Ditto !

    Have you seen Dr.Hyde at the hummingbird foundation stuff ?
    He too states CFS is always a missed diagnoses and M.E. is a very specific , recogniseable illness with tests. I was gobsmacked when i first heard this after my own journey with the medics.

    Eve though i have tsh 7 - low vitamin D3 etc. STILL nothing was suggested other than there is nothing wrong with me Ha ha. (= m.e.c.f.s.!) PR taught me about pots! one of my bp readings was 44/33 the other day lol I looked at that and thought flippin' nora :)

    I currently have a medic i feel is 100% trustworthy and hsve sent him this list.

    Thanks ! i sincerely hope you can reverse a good portion of damage , when the body has the right tools it is capable of a huge amount of healing...

    All the best
    Golden
  5. Goodness to M.E.

    Goodness to M.E.

    Messages:
    39
    Likes:
    64
    Adelaide
    Hi Golden, The Hummingbird Site is great and yes I have the book 'Missed Diagnoses' and both Jodi Bassett's books which would you believe, my doctor has taken the time to read all three! I'm going much better now than 12 months ago, I can now do 20 minutes of light cognitive or physical tasks including walking my dog as long I rest with the feet up for an hour after and before starting over again, which I'm very grateful for. It has allowed my daughter to move out and on with her own life rather than having a sense of responsibility towards me. What is PR? Glad to hear it is all starting to take shape and make sense for you, we just need to work on educating the Health Systems now?!?! Take care and always build on being a great optimist, best regards, G
    SanDiego#1 and golden like this.
  6. golden

    golden Senior Member

    Messages:
    1,649
    Likes:
    921
    Clear Light
    G,

    PR is Pheonix Rising :)sorry...

    Because i have been kept into the dark all these years over it - it has taken me an age to get the hang of what is going on. There is noone in 'real ' life i can hear this stuff from but i am hoping new medic will take time to learn. No - I know he will. He is rigouous , thorough , conscientious and utterly honourable and truthful. This will be a big help and has already come as a relief to me - your list was very timely .

    Thanks for link to books will look into it - a 'real ' book will help me too i think.

    I am a Leo and so fortunately been born with unrelentless optimism - :)
    Goodness to M.E. likes this.
  7. roxie60

    roxie60 Senior Member

    Messages:
    1,617
    Likes:
    487
    Central Illinois, USA
    My last TSH test range was .350-5.00. This is my gripe why are these ranges not statardized for all lab results??? How friggen hard is it to standardize. All the money wasted at the FDA and other govy money sink holes and they cant spend some funds to come up with standardized lab test ranges.....?????

    Here are the results from my 5 TSH tests and the range at the time of test.
    12/20/08 2.82 range 0.465-4.68
    08/20/09 1.61 range 0.465-4.68
    06/01/10 2.56 range 0.465-4.68
    03/30/12 2.578 range 0.350-5.00
    01/02/13 1.920 range 0.350-5.00 - interesting - this was during a 2 week period I actually felt a little better and had some energy

    I wonder what it is now since I have had no energy the past few weeks. The lack of energy seems to be a chief complaint for many of us....how many things can contribute to lack of energy.....are we being tested for the right things (I know that question has been brought up by many).
    Valentijn likes this.
  8. roxie60

    roxie60 Senior Member

    Messages:
    1,617
    Likes:
    487
    Central Illinois, USA
    I also think the 'CFS' diagnosis is a trash bin diag, its what we get when we push for a diag and they have no clue what is wrong. Our various blood tests 'don't look that bad'.....argh.....well if the friggen ranges are not correct they would not look that bad. And who is to say what is bad, if I report I feel like crap, no energy for months at a time then maybe for my body my results are indicative of a problem. Why do they keep trying to shove everyone into the 'majority of people would fel fine' at this range?????
  9. Ema

    Ema Senior Member

    Messages:
    3,165
    Likes:
    3,273
    Midwest USA
    I don't think they would ever develop the real, optimal ranges officially. There would be too much pressure from the insurance industry against it. If people were outside the ranges, they might have to pay for treatment and that would eat into their billion dollar profits. It will never happen.
  10. roxie60

    roxie60 Senior Member

    Messages:
    1,617
    Likes:
    487
    Central Illinois, USA
    So its an insurance company conspiracy to keep fro paying and possibly actually helping patients be well so that they would not have to keep paying for ill health????? If they identify more people say having a thyroid issue wouldn't it serve them long term to find that out and pay to have it treated and not have to keep paying for a chronically ill patient. I'm not sure I agree Ema but will not rule it out in this up is down and down is up world we exist in.....I think of the extra money they spend for more testing, labs, Dr visits, medication since we are not getting better we still seek answers. I had a god point to add but forgot it in seconds :mad:, yep nothing wrong with this brain....move along
  11. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    276
    Likes:
    83
    SouthEast USA
    Golden-
    Love the Leo's------ I am Pisces/Aries.!!!!!!!!

    San Diego #1
  12. Ema

    Ema Senior Member

    Messages:
    3,165
    Likes:
    3,273
    Midwest USA
    But they DON'T continue to pay for chronically ill patients...they declare you "fine" and move on and leave you to suffer. They're not paying for it long term. We are.

    Ema
    Valentijn and SanDiego#1 like this.
  13. Ema

    Ema Senior Member

    Messages:
    3,165
    Likes:
    3,273
    Midwest USA
  14. roxie60

    roxie60 Senior Member

    Messages:
    1,617
    Likes:
    487
    Central Illinois, USA
    Too bad we all dont get paid for suffering, we'd all be rich.
    SanDiego#1 and Ema like this.
  15. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    276
    Likes:
    83
    SouthEast USA

    The kickbacks from Drug Companies fit into this equation. Keep more people on Meds and is not to get them better and everyone makes more money. The Drug Lobby is bigger than the NRA. I have a GUN so don't start on me!!!HA. I will never forget an appointment I had with a Urologist a few years ago to do a Cystoscope. I waited over an hour in stirrups for him to come in. I was dressed and leaving when he did come in as I heard a nurse outside say "The Drug Rep is here with our Buffet". Left and never got a bill.

    San Diego #1
  16. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi Firestormm, re

    Dr Mirza is recommending that new reference ranges are used for serum Glucose and the OGTT (Oral Glucose Tolerance Test) based on the recommendations in this research.

    Follow-up Report on the Diagnosis of Diabetes Mellitus, Expert Committee on the Diagnosis and Classification of Diabetes Mellitus http://spectrum.diabetesjournals.org/content/17/1/51.full the referance ranges that Dr Mirza recommends can be found in table 1 of this article http://spectrum.diabetesjournals.org/content/17/1/51/T1.expansion.html

    He recommends that the upper level for TSH should be lowered to 2.5 are based on research articles that have shown that the reference has been skewed to high by the inclusion of people with thyroid disorders. This is all explained in this article http://jcem.endojournals.org/content/90/9/5483.long the research showed that people with truly healthy thyroids have quite low TSH levels, however as with all reference ranges some people will fall outside the range of 2.5 but still be healthy. So in his article unveiling the mysteries of the thyroid http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

    He recommends that to find out if having TSH levels between 2.5 and 5 is the cause of the patients symptoms he treats it to find out.

    He says

    ”3. The authors recommend a full-dose levothyroxine replacement for almost every one without coronary artery disease. This relies on the assumption that by the time a person develops hypothyroidism, the whole thyroid gland has failed. In our clinical experience, most people with thyroid failure present with partial thyroid failure and they lose thyroid function slowly over months or even years. Prescribing 100 mcg of levothyroxine to a person with a TSH of 10 for example is a recipe for suppressed TSH and symptoms of palpitations, tremors, anxiety, and other symptoms of overtreated thyroid failure. Hashimoto's thyroiditis, which is the precursor for thyroid failure, does not evolve into hypothyroidism over night. Since the hypothyroidism is evolving, the treatment should also be titrated gradually. This is even more cost effective, since it saves many unnecessary phone calls, visits (including visits to the Emergency department), and blood tests.

    In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH by 2 digits. This simple math will allow you to have a rough estimate of levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

    If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do not waste your time on thyroid and look for other reasons for the patient's symptoms.

    Vitamin B12 and vitamin D deficiencies are the most 2 common causes of patients with residual symptoms. One should also look into sleep apnea, depression, adrenal insufficiency, prediabetes (or diabetes), undiagnosed celiac disease with other nutritional deficiencies such as iron deficiency.

    One common mistake that we see is to get blinded by the thyroid and forget that these patients do get other illnesses.”

    The reference ranges he quotes for Vitamin D are based on the research of William B Grant and Michael f Holick which recommends vitamin D levels of 32-100 ng/ml (80-250 nmol/L as sufficient see http://www.altmedrev.com/publications/10/2/94.pdf

    Unfortunately the link that I put in the original article, explaining why the B12 reference range is wrong now no longer works. But his statement

    “Check vitamin B12 level. The cutoff reference range is >300 pg/mL (>221 pmol/L), or even higher. Most laboratories in the US have the reference range at 160 or 180, erroneously low. If in doubt, check homocysteine level, the reference range of homocysteine should be between 5 and 15 µmol/L (some authorities use 10 as cutoff). If you rely on outdated reference range, you miss the boat and fall in the trap of CFS.”

    Is based on the work of V herbert it is mentioned in this article http://www.sah.org.au/assets/files/PDFs/Pathology%20PDFs/Vitamin%20B12%20Update_San%20Dr.pdf

    Reference range

    The usual method of deriving a reference range (Mean +/- 2SD) results in a vitamin B12 reference range of around 130-850 pmol/L. This is an unsafe range as many in the population exhibit neurological symptoms of deficiency at much higher concentrations. The lowest concentration to be considered normal is 221 pmol/L. (Herbert 1996b)

    The Herbert article is in, Herbert, V. (1996a) Introduction. American Institute of Nutrition (AIN) Symposium on "Pro-oxidant Effects of Antioxidant Vitamins." J Nutr 1996;126 (Suppl 4):1197S-1200S

    Unfortunatly I can’t find it on line.

    There is an article here that explains how Homocysteine and methylmalonic acid should be tested as Dr Mirza recommends to see if someone has B12 deficiency even if B12 are in normal range http://jfponline.com/pdf%2F5601%2F5601JFP_ClinicalInquiries5.pdf

    Dr Mirza recommendations are based on up to date medical science they are not just opinions of his. Sadly laboratories seldom update their reference ranges based on modern science, which leads to many people being misdiagnosed with CFS. He says this in this article.

    The key is not to fall a victim to outdated laboratory reference ranges. On average, the key lab values in the USA are outdated behind new research by 17 years. Some values are outdated by a half a century.” http://www.amazon.com/review/R28ZY8OYSWP0R

    Because the illnesses that have wrong reference ranges are very common diseases this is leading to large numbers of people being tested and told that they are fine when they are not, and they end up with a CFS diagnosis when they don’t have it and don’t get treated for their real illness.

    Hope this answers your question on what science Dr Mirza is getting his reference range recommendations from.

    All the best
  17. roxie60

    roxie60 Senior Member

    Messages:
    1,617
    Likes:
    487
    Central Illinois, USA
    excellent references rlc, thank you. What ever I have I feel falls in the subclinical area....and it fluctuates (the symps) equally aggravating to me and the Drs I'm sure.
  18. roxie60

    roxie60 Senior Member

    Messages:
    1,617
    Likes:
    487
    Central Illinois, USA
    BTW,, here is Mirza's complete review as linked in rlc post

    3 of 3 people found the following review helpful
    1.0 out of 5 stars The dogma of CFS, April 4, 2012
    By ​
    This review is from: Conquering Chronic Fatigue: Answers to America's Most Misunderstood Epidemic (Paperback)
    I have rigorously criticized the concept of chronic fatigue syndrome and the government guidelines (CDC in the USA and NICE guidelines in the UK). I have published comments on these deficient guidelines in the British Medical journal.
    In this book, there is not even 1 word mentioned about Celiac disease or vitamin D deficiency.
    Chronic fatigue syndrome is just a fancy long term for what the patient already tells us: being fatigue for a long time. How can that be a diagnosis? A systematic approach to evaluation of fatigue is necessary. Most patients with chronic fatigue are not being evaluated thoroughly. Nutritional deficiencies, vitamin and mineral deficiencies, pre-diabetes, subtle thyroid diseases, subtle pituitary dysfunction, subtle changes in male and female hormones, are among some causes. Iron deficiency, or iron overload could be a cause. Positional vertigo, peripheral neuropathy.. etc.
    The key is not to fall a victim to outdated laboratory reference ranges. On average, the key lab values in the USA are outdated behind new research by 17 years. Some values are outdated by a half a century.
    I have evaluated over 5000 patients with chronic fatigue over the past 20 years, not even one has received the diagnosis of CFS. Chronic fatigue syndrome is a syndrome that has not been thoroughly evaluated.
    A systematic approach to human body, with a full knowledge of physiology, metabolism, biological clock, sleep,and nutrition and evaluation of every organ system is the key to diagnosis.
    My initial evaluation takes over 75 minutes, initial blood tests include more than 20 tests with more to follow based on initial screening. I challenge all the outdated reference ranges based on new research articles.
    This book, despite a good attempt by the author, is just another deficient tool and again, is falling a victim to the dogma of CFS.
  19. Goodness to M.E.

    Goodness to M.E.

    Messages:
    39
    Likes:
    64
    Adelaide
    Here is another very interesting book regarding our health and alternative treatments. I hope I have upload this free chapter on Soy products and why not to use them.

    Attached Files:

  20. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    276
    Likes:
    83
    SouthEast USA

    Great Post and reference. Is there a range for testing on Diabetes Insipidus?? All pf my Dr. disagree on range and testing.

    Thanks for you great insight.

    San Diego #1

See more popular forum discussions.

Share This Page