Possible symptoms that back up CFS of mine

[ratdog]

Thanks for all the support. I have spent part of the day looking and reading other folks posts, looking for clues. I have another apt. with my GP on thursday. Looking thru the tons of blood work I have had done, I noticed a few things that may be markers that I indeed have CFS. One site said an ESR, or Sedimentation Rate that was very low indicated possible CFS, my dr has ran that one two times in the last month, first test the result was 1 on a scale of 0-15, second test result was 2 on scale of 0-15. I also read anything odd on a brain MRI was a red flagg. I had a CT of my brain one month ago, and there were two strange comments on the report "There is dilatation ventricular system" and "Cavum Septum Pellucidum and Vergae". My blood test EBV AB VCA,IGG was greater than 8, plus I have low cortisol. If you had to choose five or ten blood tests to be done that specifically related to CFS, that you would ask your GP to run, which ones would you choose? Thanks so much for your help.

 

[richvank]

Hi, ratdog.

If you mean standard medical tests that GP's can order from mainline medical labs, there really aren't any that will always give sensitive or specific information on CFS. Here's some you can consider, though:

1. Complete blood count. In some cases, this will show somewhat elevated values for MCV and/or MCH. Often, they are only high-normal, and are disregarded by GPs. In some cases the white blood cell count will be high or low,
depending on infections that might be present.

2. Blood serum B12. In some cases, this runs higher than normal. GPs usually interpret this to mean that the patient has enough B12. This is incorrect, because the functional B12 deficiency in CFS will often cause the serum B12 to rise, because the cells are unable to use B12 properly, and export it back to the blood.

3. Cortisol. They usually measure this in the morning, and in some cases it will be abnormal. Early in CFS, it can be high. Later on, it is often low. It's better to do a 24-hour saliva series for cortisol, but this is not standard practice.

4. Osmolality. In some cases this will be elevated because of the diabetes insipidus (not the same as diabetes mellitus) that is often part of CFS. If you have high daily urine volume and constant thirst, this one may be elevated.

5. Homocysteine. In some cases this will be high or low, but in many cases it will still be in the normal range. If it
is high or low, it means that there is a problem in the methylation cycle, but it isn't always a good indicator.

6. Erythrocyte sedimentation rate. In some cases, this will be below 5 mm per hour because of hypercoagulation, caused by immune system activation of coagulation (ISAC). GPs usually don't understand the significance of low sed rate.

7. Thyroid tests. If a person has Hashimoto's autoimmune thyroiditis, which is common in CFS, there will be elevation of the thyroid antibodies. There may also be abnormalities in thyroid hormones.

8. Aldosterone. This is often low in CFS.

9. Fasting glucose. This may be low. Many people who have CFS suffer from hypoglycemia.

10. Viral antibodies. Various of these are often elevated, such as those for Epstein-Barr virus.

These aren't blood tests, but people with CFS often have low blood pressure, and many have low body temperature, though it may be elevated with certain infections.

There are non-standard lab tests that will show abnormalities in CFS, but it is challenging to get a GP to order them, and also a challenge to pay for them. The issue here is that the standard tests used routinely by GPs have been selected to screen for other disorders, not for CFS.

Best regards,

Rich

 

[merylg]

Hi ratdog,

Regarding low ESR: " can be seen with polycythaemia (a condition where a patient makes too many red blood cells), with extreme leucocytosis (patient has too many white blood cells), and with some protein abnormalities."

http://www.labtestsonline.org.au/understanding/analytes/esr/tab/test

Causes of polycythaemia: http://www.mayoclinic.com/health/high-red-blood-cell-count/MY00111/DSECTION=causes

Check your Full Blood Count (FBC). Is the Red Cell Count high? What is the Mean Cell Volume (MCV) of the Red Cells?

I have often seen low ESR in people with high red cell counts who have haemoglobinopathies (inherited condition).

More good discussion on low ESR on PR forums here: http://forums.phoenixrising.me/index.php?threads/esr-always-low-in-me.19139/#post-293422

 

[Seven7]

I would Add Natural Killer Cell test. (Numbers and Activity if you have access). Usually low in CFS.

 

[Sushi]

Also, a 3 hour glucose tolerance test may be abnormal even if fasting glucose is normal.

This was the case for me--always normal morning fasting glucose, but I got suspicious and did the 3 hour tolerance test and it went down to 40! You can often get a glucose meter "for free" at a pharmacy, as different companies do promotions. Just make sure that the one you gets includes some of the test strips--that is where they make their money.

Sushi

 

[taniaaust1]

The following symptom list with the rates of symptoms find in ME/CFS according to studies may be useful to you http://wwcoco.com/cfids/bernesx.html eg 86% of us have low blood pressure (many of the rest of us have dysregulated BP with it possibly swinging both ways).
So consider.. do you have what is considered low BP?
................

Rombergs Test (I think its around 70% of ME patients (Im talking of the classical ME patient group rather then general CFS) are postive on the Rombergs test. (you could do this one at home if you have someone to catch you). http://en.wikipedia.org/wiki/Romberg's_test
....

The ME abnormal finding on MRI scans is "elevated numbers of puntuate lesions, particulary in the frontal lobes and subcortical areas" that quote comes from the canadian consensus document "A clinical case definition and guidelines for Medical Practioners

When looking for findings which are often found in ME you arent looking for just abnormal findings but rather "specific" abnormal findings in which have been related to ME. (I have no idea of what the one they found on your scan is or if its related to what I just quoted above).
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As another said.. Hypercoagulability may show up in ME eg flow cytrometry, fibrinogen, thrombin/anti thrombin complexes etc. My abnormal hypercoagulability showed up on an APTT test which a hospital did as part of the hospital standard blood work stuff.. (it had never been on any of my standard doctors blood tests).
My hypercoagulability also showed up on a coagulation studies test which my CFS specialist got done.

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ME Autonotmic issues which very commonly show up on tests, most/nearly all ME patients have issues here.. eg POTS (postural orthostatic tachycardia syndrome or NMH (sudden hypotension which happens on standing). (may be seen by doing poor mans testing at home with BP/heart monitor or by a proper tilt table test).
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food or chemical sensitivities developing.. is another fairly strong sign I think that it is probably ME. (I dont think these commonly start appearing in other illnesses). This issues thou may develop later in the illness.

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Another finding which is a common ME one I have is a low but still within normal range white cell count (some may go out of normal range low). Very low normal, can be indicative of LONG TERM chronic infection and some ME specialists will on seeing this will treat eg antivirals etc, after seeing this. (mine only just stays in the normal range, its on the border at times).
I think that can be high/high normal in some who havent had ME/CFS long term.

As another said NK cell levels and FUNCTION is often not good in ME.

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The abnormal EEG finding in ME is "elevated EEG activity in theta and beta frequencies and increased intracerebral electrial sorces in left frontal region delta and beta frequencies in eyes closed condition may be identified. Reduced sources in right hemisphere (beta) may be noted during verbal cognitive processing" quote from the canadian consensus defination document.
(I had that abnormality on testing).
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It may be noted that the person has also FM on testing the fibro trigger points. That condition commonly coexists.
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The canadian consensus document also mentions cortisol "24 hr urine free cortisol". Mine is abnormal on test with that (yet my morning cortisol blood test is fine).
..

Virology
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low body temperature or the opposite low grade fevers are common in ME

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I myself thou they arent mentioned in the canadian consensus doc say also other common things in ME found are
- abnormal glucose (hypoglycemia).. ive had this show up on blood tests a couple of times and some ME specialists talk quite a bit about that
- low free testosterone (as Ive noticed so many of us at this site have had abnormal findings in that area so have come to think this may be a common ME finding).
- iron studies (low ferritin.. that is to do with iron storage). Interestingly thou my ferritin is low, my normal iron test is normal.. my CFS specialist says he often sees low ferritin in his CFS patients and associates this with CFS.
- Vitamin D (most patients have a deficiency).
- I cant remember what they are called.. but many ME patients loose the moons on their fingernails (that lighter part at the bottom of the nail. There was a ME/CFS specialist who once mentioned this and this is true for me.. only my thumb nails now show their moons. I assume this one would be found more in those who have had ME for quite a while. Maybe that happens in other chronic illnesses too?).

For more test abnormalities commonly found in ME .. check out the canadian consensus document http://sacfs.asn.au/download/International Consensus Criteria.pdf (sorry i cant tell you what page its on as I have the overview document of it at home). In the overview document.. right at the end before the references, there is a whole page of tests titled "Tests for abnormalities in ME/CFS"

 

[taniaaust1]

Also, a 3 hour glucose tolerance test may be abnormal even if fasting glucose is normal.

This was the case for me--always normal morning fasting glucose, but I got suspicious and did the 3 hour tolerance test and it went down to 40! You can often get a glucose meter "for free" at a pharmacy, as different companies do promotions. Just make sure that the one you gets includes some of the test strips--that is where they make their money.

Sushi

Anyone who gets a proper 2 or 3 hour glucose tollerance test done.. ask your doctor to get the insulin readings done too during the test (the insulin isnt usually done at same time on a GTT unless doctor requests). This may show up insulin resistance which Ive found makes many ME/CFS symptoms worst or can be giving you extra symptoms. Hypoglycemia can be caused by high insulin (hyperinsulinemia).

(GERD and bloating and food issues are common symptoms of hyperinsulinemia)

 

[heapsreal]

Firstly if possible i would try and find a doctor who knows alot about cfs. Trying to teach a new doc about this is very hard as most have their minds made up its a form of depression or just not familiarwith cfs treatments and many wont be told by their patients how totreat certain conditions etc. Look for intergrative practioners etc as they will be up to date on alot of cfs stuff and know more about appropriate testing to be done.
Another way to locate a good cfs doc is to post a thread asking others if they know a good doc in your area, maybe someone who can work in with your normal GP. a normal GP will still be handy for prescriptions and non related cfs medical stuff, so good to keep them on side.

cheers!!!

 

[xks201]

If you have low cortisol on a lab result you need to replace that with at least 20mg of hydrocortisone a day. That is nothing to mess around with if you are deficient you NEED that, and most CFS ppl probably do. You will not get out of bed without it.