Do I Want a B12 Panel?

[Little Bluestem]

I am discussing with my physician, via e-mail, what tests I want do at my next appointment. She has minimal knowledge of ME/CFS. She suggested a B12 blood panel.

I take my B12 (methyl and adenosyl) sublingually. Will that show up as expected in a blood test? I see in my notes that a the only thing a serum B12 test is good for is suggesting a functional block if it is high. I have no insurance, so this is self-pay. Is it worth the cost?

 

[taniaaust1]

Nope.. I think its pointless... it can come up showing one is in normal range when one could still have a deficiency. I suggest saving your money for another test, there are so many others which could be useful to you.

eg iron studies.. have you had that done? (may show more then just a basic iron blood test.. iron storage is often low in ME/CFS and that shows up with iron study).
Have you had your Ds tested?
How about cortisol test. (my blood test for morning cortisol are ok but my 24 hr urine cortisol tests are usually out of normal range).
If you get wired a lot or have OI or POTS ... urine biochemisty test may pick up abnormal adrenaline or noradrenaline..
NK cell levels levels AND FUNCTION
Tilt Table Test if you have Othostatic intollerence
Rickettsia blood test (if its in your country.. it probably is.. one of my specialists found that half his patients were positive to it.. I know similar finding has been found in other country too).
MTHFR polymorphism test (very common polymorphism in community 9-18% but which affects the methylation cycle so can be extra beneficial to know about if you have ME/CFS).

Not one for the most doctors but many find a hair anaylses a good thing to have done as it can give clues to treatment directions. eg mine came back showing I was very deficient in the trace mineral molybdenum.. supplementing with it has made a difference for me.

or I suggest to go the test route to rule more things out IF your symptoms are fitting any other illnesses (most of us have symptoms which fit other things which still havent been ruled out.. eg mastocytosis if you fit that, Im wanting to get mitochondrial disorders more ruled out).

The tests I suggested above are the ones I suggest which are most likely to come back showing abnormalities..

 

[nanonug]

I am discussing with my physician, via e-mail, what tests I want do at my next appointment.

Would you mind providing a list of your symptoms? Otherwise, making any kind of suggestion is meaningless...

 

[rlc]

Hi Little Bluestem, everyone who has the symptoms of ME should have a B12 panel done! it does not just test for B12, it tests for other things like Folate and homosysteine etc see http://www.mayomedicallaboratories.com/test-catalog/print/90431 and these other tests can indicate a large number of diseases, if your B12 results come back very high or low despite the fact that you have been taking B12 it can indicate many disease processes that need further investigation.

So it is a test that can provide a lot of useful information, can’t promise that it will, but it should be done.

If you haven’t already had this test done and it is quite a basic test, it does make me wonder what other basic tests you have not had done?

If you want to provide more information on this then I’m sure that the knowledgeable people here will try and help.

All the best

 

[Little Bluestem]

nanonug, very good idea. It would have saved Tania some work.

Symptoms (post-flu onset):
fatigue
post exertional exhaustion
cognitive dysfunction
disrupted sleep cycle
upregulated (?I forget which part) nervous system - mostly controlled

@Tania, my doctor is one that will use hair analysis. I sent a sample in last week, but I may or may not get the results before the doctor’s appointment.

I have had my D tested last winter and it was low. With another winter coming on and me being in the upper U.S., I am planning to continue supplementing the D without testing at this time.

I am planning on doing iron studies.

I use saliva testing for cortisol and adrenal function.

Not wired, OI, or POTS.

I am going to do pathogen testing when I am a little healthier. I am not sure I could cope with the treatment now. Right now I am trying to improve my sleep and placate my liver.

I am undecided on genetic testing.

rlc, since I am self pay, she is providing me with prices. She listed vitamin B12, RBC folate, and homocysteine as separate tests with separate prices. I stated in another post that one problem is that she will only accept tests done by the labs she has chosen to work with.

While we are discussing blood tests, she suggested a methylmalonic acid test. It thought that was a urine test. Can the blood also be tested for MMA? Would that be a better indication of B12 than the B12 blood test, whether blood or urine?

I figured out that I had CFS just before I lost my job and insurance, so I have had very little testing done. Mostly standard things you would do in a ‘mature’ woman - CBC, thyroid, adrenals, liver & kidneys, vitamin D.

Currently, the tests I think I will get are:
Thyroid panel, including reverse T3
CMP (includes K & liver function)
RBC folate
Homocysteine
Transferrin and TIBC
Ferritin
Iron
CBC

 

[nanonug]

Symptoms (post-flu onset):
fatigue
post exertional exhaustion
cognitive dysfunction
disrupted sleep cycle
upregulated (?I forget which part) nervous system - mostly controlled

These are essentially "classical" ME/CFS symptoms. Do you have any gastrointestinal issues? Or what about allergies or food intolerance? Itching? Flushing? Headaches? Shortness of breath?

Currently, the tests I think I will get are:
Thyroid panel, including reverse T3
CMP (includes K & liver function)
RBC folate
Homocysteine
Transferrin and TIBC
Ferritin
Iron
CBC

These all look good, in my opinion.

 

[Little Bluestem]

I have some minor gastrointestinal issues that developed well into the ME.

I had some minor respiratory allergies before I got ME. IIRC, they became worse at about the same time I got ME. They are fairly well controlled.

'No' on the rest of them.

 

[nanonug]

I have some minor gastrointestinal issues that developed well into the ME. I had some minor respiratory allergies before I got ME. IIRC, they became worse at about the same time I got ME.

In that case, you may want to consider the tests mentioned in this post:The four ME/CFS tests almost no one has ever done.

 

[Little Bluestem]

I'll go there next.

 

[rlc]

Hi Little Bluestem, MMA can be tested in blood and urine all you need to know about this test is on these pages http://labtestsonline.org/understanding/analytes/mma/tab/sample it helps to differentiate between mild B12 and Folate deficiencies, A B12 panel contains all these tests, but they can all be done separately. If you get B12, Folate and homosysteine done, this will tell you if there is a need for the MMA tests, if B12 and folate are in the middle to higher end of the reference range and Homosyteine is normal you probably won’t need to do the MMA test, be aware that the reference ranges used by most labs for B12 and Folate have been shown to be too low, so make sure you are in the middle to higher end of the reference range.

The B12 tests is the best indicator of severe B12 deficiency or an excess of B12 that can be caused by many diseases, the other tests are needed when B12 results are ok but a bit low, they will tell if these B12 levels are to low for the patient and are causing symptoms.

You say you figured out you had CFS and that you have had very little testing done, CFS is not something that can be diagnosed because of the symptoms someone has, the symptoms of CFS can be caused by about one hundred other diseases and because of this a lot of testing has to be done to rule out these other diseases before anyone should be given a CFS diagnosis.

I do appreciate that you are in a difficult financial situation with not having insurance to cover the tests you need doing, and I think it is terrible that people are left in this situation. But you really do need to do everything you can to get more testing done because you may have a very easily treatable disease and be able to get your life back.

I would recommend that when you can afford it after you have done the tests you have said you are going to get, if they don’t provide any answers that you then get.

ANA
Celiac tests
ESR
Phosphate
C reactive protein
Creatine kinase
Urinanlysis
Once that is done if nothing shows up get your doctor to have a look at table two on page 16 of this document and see if they think any of the tests here should be done http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

How much vitamin D have you been taking? People can often need very large amounts to properly cure vitamin D deficiency, and it may be worth getting the test redone to see what your current levels are to work out what treatment you need.

Hope this helps

All the best

 

[Little Bluestem]

If you get B12, Folate and homosysteine done, this will tell you if there is a need for the MMA tests, if B12 and folate are in the middle to higher end of the reference range and Homosyteine is normal you probably won’t need to do the MMA test,

That is exactly why I was trying to get some testing done before I say my physician. I will leave MMA out when I am there. If I need it, I will figure out how to ship the blood sample to her. Since it is a fasting test, I cannot get it done there anyway. I have hypoglycemia and cannot drive 1.5 hours on an empty stomach.

I am taking 2500 IU units of vitamin D four times a week.

 

[rlc]

Hi Little Bluestem, I would recommend that you do get the Vitamin D test redone just to be on the safe side, recent research has shown that healthy adults often need 3 to 5 thousand IU of vitamin D3 to maintain healthy levels, the amount you have been taking is under this, you say that your vitamin D was low last winter, I don’t know if the dose you are on now is what was used to treat it, but depending on how low people levels are they can need between 500,000 to 1,000,000 iu to cure the deficiency, a lack of magnesium can also affect people’s ability to absorb vitamin D. Also if you have a undiagnosed disease like Celiac or Crohns disease these can stop people from being able to absorb the vitamin D and any other vitamins and minerals they are taking.

So my feeling is it would be a good idea to recheck it just to make sure that your levels are ok, if you are in the upper part of the US you are looking at four to six months were you will get no vitamin D from the sun, so if the dose you are on has not been enough to get your levels high enough your vitamin D will go down substantially over the winter making you a lot worse and susceptible to other infections.

If you’re interested there is a very good article here that explains the new findings in vitamin D research. http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf

Has your Hypoglycemia started with the onset of your other symptoms or is it something you have had for a long time, Hypoglycemia can be caused by many diseases and may be a clue to what is causing all your other problems.
Hope this helps

All the best

 

[Little Bluestem]

My vitamin D dose is what was recommended to treat my deficiency. I don’t know where in the midden around my computer to find the previous D test results. It may not have been very low. My physician treats more aggressively than some. In the interest of keeping this as brief as possible, I didn’t mention that my liver ALT enzymes were also elevated at my last visit. I think the liver is involved in fat metabolism, so that might be a reason for keeping the D dose conservative. She is recommending another D test, so I will do so.

I have had hypoglycemia all of my life, as has my father. It is seldom any problem because I do not do things like go for hours without eating after I get up in the morning.

Thanks for the link on vitamin D.