Blood Tests for CFS/ME/CFIDS Misdiagnosis
Blood Tests for CFS/ME/CFIDS Misdiagnosis
This is the list of blood tests that I was given, that lead to me finding out that I’d been misdiagnosed with CFS/me for about 17 years. I’ve added a few extra tests which I’ve marked with a *, and some links to more information. These tests won’t rule out every possible cause of CFS/ME misdiagnosis, but should pick up the majority of them.
Complete Blood Count
Complete LFT Liver Function Tests
Complete KFT Kidney Function tests
Cholesterol
Triglycerides
Glucose (fasting) The old reference ranges for Glucose fasting have been proved to be wrong, the correct range for this test should be under 100mg/dl (5.5mmol/l) using the old ranges Diabetes and Pre-Diabetes (also known as impaired glucose fasting or impaired glucose tolerance) can be missed. The symptoms of these conditions can easily be mistaken for CFS/ME; the reference ranges for the two hour Glucose test have also been proved to be wrong, information on correct reference ranges here
http://www.networkreferencelab.org/nrl_content.aspx?id=3233
Symptoms of Pre-Diabetes here
http://www.diabitieslife.com/diabetes/diabetes-care/type-1/causes-and-symptoms-of-pre-diabetes.htm
Complete Iron Studies (don’t let Doctors just do Ferritin) a lot of Doctors are out of date on how to read high iron levels in regard to Hemochromatosis and still rely on genetic testing which they shouldn’t do. Information on how it should be done can be found here
http://www.ironoverload.org/
Here’s an article about how hemochromatosis can cause the same symptoms as CFS/ME
http://www.haemochromatosis.org/chronic-fatigue-syndrome-fibromyalgia.html
TSH should be below 2.5. The old reference ranges have been proven to be wrong see
http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
Free T3
Free T4
Reverse T3
Thyroid antibodies-antithyroglobulin and antiperoxidase
TRAB (thyroid receptor antibodies)
Iodine
Morning Cortisol; before 8.30am. A lot of Doctors are unaware that you can have a normal result on this test, but still have a major Adrenal problem, article about it here
http://www.suite101.com/content/adrenalinsufficiency-a1543
*ACTH
*Aldosterone
If there is any doubt about Adrenal problems the only test that can be relied on is the ACTH stimulation test, information about it here
http://www.acthstimulationtest.com/
Article about Addison’s disease here
http://www.suite101.com/content/addisonsdisease-a1714
A site with a good graph that illustrates what failed adrenal tests may indicate is here
http://en.wikipedia.org/wiki/Adrenal_insufficiency
Anyone with salt cravings should have their adrenal glands investigated, Aldosterone controls salt levels in the body and is made in the adrenal glands.
Homocysteine
Oestrogen
Progesterone
Testosterone
FSH
LH
For the next two tests women please note date and time of the test in the menstrual cycle if relevant
ESR
CRP
For any hidden inflammation, infection, allergies do Ig tests
e.g. Ig A. Ig E, IgG etc
Gluten Sensitivity tests, You have to eat gluten containing food before this test or else you may get a false negative result and miss the diagnosis of Celiac Disease. If any doubt remains try a gluten free diet for a few months.
Folic Acid
B12, B12 should be at least above 300pg/mL (221pmol/L) a lot of labs use reference ranges a lot lower which can lead to misdiagnosis, don’t let a doctor tell you that because your blood looks fine you don’t have it. Changes in the blood caused by B12 deficiency (Macrocytosis) is a late sign of deficiency and you can get the symptoms of it without this happening.
Information about this can be found here
http://webcache.googleusercontent.c...+b12+referance+range&cd=2&hl=en&ct=clnk&gl=nz
B12 levels need to be monitored while being treated, some people can have mal-absorption syndromes that stop it from being absorbed, in which case levels can continue to fall leading to pernicious anaemia which can be fatal. Information on B12 deficiency here
http://www.mayoclinic.com/health/vitamin-B12/NS_patient-vitaminb12/DSECTION=evidence And here
http://www.essortment.com/all/vitaminbdefi_rndj.htm
Some people can get side effects from B12 supplements, information about it here
http://ezinearticles.com/?The-Side-Effects-Of-Vitamin-B12&id=816035
*Vitamin D , Vitamin D deficiency causes severe fatigue because you need it to absorb Phosphorus and you need Phosphorus for your ATP to work. ATP is like a little battery that’s found in every cell in the body. Full explanation of ATP here
http://www.ihealthdirectory.com/adenosine-triphosphate/
It also causes joint pain, muscle pain and muscle twitching amongst a host of other symptoms. The old reference ranges for Vitamin D have been proven to be wrong. Old recommended reference ranges and recommendations for treatment can be found here
http://www.ncbi.nlm.nih.gov/pubmed/19835345 Information on new reference ranges and lots of other information here
http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml
Anyone taking high doses of Vitamin D should have their Calcium levels monitored because there is a chance of developing Hypercalicimia when taking Vitamin D. If Vitamin D levels don’t rise with treatment, it indicates that there is another problem in the body, stopping it from being absorbed e.g. Mal absorption syndromes, kidney conditions. Liver conditions, Hypoparathyroidism etc and needs to be investigated.
This site contains general information on side effects and drug interactions of Vitamin D and has more detailed information if you follow the links at the bottom of the page
http://www.drugs.com/mtm/vitamin-d3.html
*Sleep Apnea, Information about Sleep Apnea can be found here
http://www.medicinenet.com/sleep_apnea/article.htm
*Lyme disease, Testing for Lyme disease is usually done with the ELISA and immunoblot tests; however these tests are notoriously inaccurate and can often produce false positives results, which can lead to people being treated for something they haven’t got, or not getting treatment because it’s assumed it’s a false positive. Information on these tests here
http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm
However a new test called the VOVO LIPS test has been designed which should be able to resolve this situation. Brief information about it here
http://www.sciencedaily.com/releases/2010/06/100618141631.htm Scientific information here
http://www.asm.org/asm/images/Communications/lyme disease-cvi.pdf
Anyone who orders tests for Lyme or any other Bacterial or Viral infection needs to make sure that they get a plain English explanation of what the tests mean from an expert, these tests are incredibly difficult to interpret. A lot of healthy people have positive IgG or IgM results and high titers on these kinds of tests, and it just means that they had the illness in the past and are often immune to it. I’ve even had these kinds of tests misread by a doctor.
*I’ve read about some doctors saying that, about five percent of cases of CFS are misdiagnosed SLE (Systemic Lupus Erythematosus) and another five percent are misdiagnosed Multiple Sclerosis, diagnosis of these two conditions is far too complicated for me to write down, so here’s links to how it’s done SLE (Systemic Lupus Erythematosus) here
http://www.lupuscanada.org/english/living/1000faces_sle1.html
Multiple Sclerosis symptoms here
http://www.mult-sclerosis.org/mssymptoms.html
Diagnosis here
http://www.mult-sclerosis.org/diagnosingms.html
*Porphyria, Tests are blood, urine and stool tests for porphyrins, Information on the different kinds of Porphyria here
http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/
*Wilson’s Disease, Wilson’s disease could easily be mistaken for CFS/ME, and I have seen a lot of questions regarding Low cereuloplasin and high 24 copper urine tests on forums so here’s a link on how to diagnose it
http://geridoc.net/wilsonsdisease/PracticeGuidelineOnWilsonsDisease(RobertsSchilsky).pdf
*Another possible option is this chronic CO poisoning
http://www.mcsrr.org/resources/articles/P11.html
A list which contains other conditions that can be misdiagnosed as CFS/ME can be found here
http://www.wrongdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm
Because the symptoms named in the various criteria for CFS/ME are so numerous and vague, and overlap with those of hundreds of other conditions, and because the number of tests mentioned to do in these criteria are so small, (for a comparison of the very different criteria for CFS/ME read this
http://www.nzgg.org.nz/guidelines/0084/040518_matrix.pdf )and because of the long held belief that CFS/ME is somehow a mental problem a lot of suffers haven’t even had these tests done, plus the references ranges used for Glucose, TSH, B12 and Vitamin D being wrong, (all of which are tests that point to conditions that have the same symptoms as CFS/ME and effect hundreds of million people worldwide.)
Everybody with a CFS/ME diagnosis should seriously consider that they may have been misdiagnosed.
I would recommend that every CFS/ME sufferer gets copies of every test that’s been done on them if they haven’t already. So they can see if something’s been overlooked and so they can compare them against the new reference ranges.
If you have unhelpful doctors, find out what your patient rights are and if needs be seek legal advice to overcome the problem. If possible change doctors and keep doing it until you find one that is prepared to investigate your condition thoroughly.
A useful tool for narrowing down what conditions failed lab results and symptom may point to, can be found at
http://www.diagnosispro.com/
It’s designed to be used by doctors so they can do a differential diagnosis, which means coming up with list of conditions that fit with the patient’s lab results and symptoms. Full definition of differential diagnosis is here
http://en.wikipedia.org/wiki/Differential_diagnosis
This site can be a bit complicated to use, but instructions on how to use it can be found here
http://en.diagnosispro.com/diagnosispro_help/generate_a_differential_diagnosis_list/
The site often uses a lot of medical terns which can get confusing so here’s a dictionary of medical terms
http://www.medterms.com/script/main/hp.asp this site also contains vast amounts of other useful information.
A lot of people with a CFS/ME diagnosis understandably try a lot of different medications and supplements in an effort to relieve their suffering. However after reading through posts on many different forums it is apparent that a lot of people are not getting advice from their doctors on the side effects and drug interactions of their medications, which may be worsening their condition.
If you are not receiving correct medical information on the side effects, drug interactions etc of the medicines and supplements your taking, on this site you will find information about every prescribed medication and vitamin and most supplements and their side effects etc
http://www.drugs.com/
Information on side effects of most Herbs and supplements can be found here
http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html
If anyone feels that the information in this post would be helpful to other CFS/ME sufferers on other forums, support groups etc, will they please pass it on. Thanks