Can you help me read my test results, please?

[Wombat140]

I succeeded in having a blood test at last! But I'm not sure what all the results mean.

 

As some of you'll know from my other thread (What blood tests are the first you'd try?), I'm experimenting with the mutation/methylation angle, and that was one of the things that I was hoping this could shed some light on. The other is the PANS possibility.

 

Unfortunately, there were rather few tests I could get. Most of the things that people on here recommended to me a while ago turn out to be things my family doctor can't order without a referral from a specialist.

 

Of the things they did test, she says they're all normal except for low red cell count and vitamin D - she's prescribed me extra iron and vitamin D herself. But I know that test results that are "normal" in ordinary contexts can still have implications for the methylation question and so on (if only by indicating that I'm in fact not short of a particular thing that you might expect me to be from my genetic results).

 

Here's a photograph of the test results as they're too long for me to type out:

 

The only immune-system-related tests I was able to get were C-reactive protein (which is a test for general level of immune activity) and the white blood cell count. The C-reactive protein was normal, <0.2 mg/l (normal level stated to be anything below 10) and the white blood cell count was slightly low, 3.7 x 10^9/l (normal range stated to be 4 to 11). Does that indicate that it probably isn't PANS?

 

And what do the three vitamin results (B12, folate and D) suggest about what I should be doing about the methylation and other supplements - apart from that I should be taking D, obviously? N.B. She did say before I had it that the B12 test wasn't very good, so I don't know whether that figure is reliable.

 

Any help very much appreciated. I just don't know how to interpret these things and would be glad of any comments from people who've been up against test results before.

 

edit: P.S. I'm aware that some blood tests are conventionally quoted in different units here than in America. If you can't interpret any of these say so, as I do happen to know how to convert between mol/litre and g/litre units (it's a rather fiddly calculation, it varies depending on the substance in question) so I can probably do them for you!

Edited November 20, 2015 by Wombat140

[LNN]

These links can help on the relevance of some of these results https://labtestsonline.org/understanding/analytes/cbc/tab/test

and https://labtestsonline.org/understanding/analytes/cmp/tab/test

 

It doesn't look like you're deficient in folate or B12 - but the important thing to remember in methylation is that you may have enough of the raw materials but if your snps prevent you from efficiently converting those raw ingredients into the forms the body needs, then you can still be deficient in the finished product. So you may have lots of folate, but someone with MTHFR +/- can only convert 50% effectively and +/+ may only convert 10% into the needed methylfolate form. That's why supplementing with the "already-converted" methylfolate can bring results when supplementing with regular folate can make things worse (because it causes a build-up of unusable folate, called a folate trap). The thing that would be effected downstream would be homocysteine, which I think I recall you might not be able to get tested? So you're still stuck treating based on how it makes you feel

 

Your lymphocyte and white blood cell counts are low, which rather than meaning you're infection-free, could mean you're immuno-deficient and can't raise a sufficient immune response to fight off an infection. If you could ever manage another blood draw and your doctor could order it, you might find it helpful to run an Immunoglobulin panel that measures your IGg, IgA, IgM and IgE levels. Some Pandas kids are low on these tests and it helps them qualify for IVIG.

 

I'm sorry you didn't get more answers from this time around - though I'm glad you found the anemia and low D. Correcting those levels are bound to help you feel better in some ways. But a huge congratulations for getting the blood draw!! That should be cause for a huge celebration!!!

[Wombat140]

thank you very much, LLM! I'm pretty chuffed about that, I have to say

And thank you very much also for the advice. Those articles are good, just been reading them, I shall bookmark that site.

The scribble on the left, if I'm understanding it correctly, seems to imply that the iron deficiency could account for the low white blood cell count too. Is that a thing, or am I misunderstanding what "WCO" means? Why do you say that that's a low lymphocyte count? The lab seems to think it's within normal range (the right-hand column of figures are the normal ranges).

No, my doctor definitely can't order the immunoglobulin panel, I asked her about immune system tests and she said all she could get on her own authority was the C-reactive protein and the white blood cell count. The relevant specialist (haematologist or immunologist) could order them, I think, but I wouldn't get a referral to them unless there's some reason to think that there might be something wrong in my immune system! Catch-22!

The only possibility might be to get my doctor to do another blood draw, and then to send it to a private lab, but I don't know whether that's possible - I did ask her in a letter, but she forgot to answer that bit. (I wouldn't want anyone but her or the practice nurse to take the sample, as they know me and know what they're dealing with, and I know that when I try to warn them not to do a certain thing as it sets my OCD off, they listen. I've encountered some that just respond by moving even faster and trying to jolly me through it, resulting in the screaming ab-dabs followed by me going home early without anything having got done!)

Not really sure what use it would be if I did find out there was a PANDAS thing going on, anyway. I've had azithromycin, I've had Augmentin and I've had tinidazole, and none of them seemed to get things anywhere; in fact I developed a new and particularly unpleasant compulsion while I was on them. Even if I could get to the point where I could do IVIg, you can't get it here - even at your own expense - as the stuff is rationed and only available for life-threatening autoimmune conditions.

No, no homocysteine test, I was quite surprised about that but I asked and it seems she can't order it and possibly our local lab doesn't even do it. Again, a private lab could presumably do it if that were possible. (And the ammonia too, though I'm possibly making too much fuss about the ammonia, it may just be that I'm not eating enough sulphur for the CBS mutation to be a big deal. I'm just vaguely suspicious of the way the sulphate test strips so far never show any change as I add more and more forbidden foods back in; I keep wondering whether there is in fact sulphite being produced but it's not getting turned into sulphate (and hence not showing on the test) because of a SUOX thing. Unfortunately I don't know my SUOX status, it's not on GeneticGenie.)

[Mayzoo]

I just needed to pop on and say a super congrats on such a personal milestone for you. Regardless of the medical outcome of your tests, you should be very proud that you overcame such a difficult task!!!!!

[Wombat140]

Oh, thank you very much Mayzoo! It took a while but I'm lucky to have a really patient doctor, and I'm hoping that now I've done it once and seen for myself that nothing awful happened it'll be easier in future. (Funny how you can still need to see for yourself that it'll be OK, even if you already know it will!)

 

It's a relief that one thing the blood test does do is temporarily solve the problem of what-to-try-next; I don't need to start on anything until I've done the iron and D as my actual doctor actually told me to do, and see where that gets me. But I'll be needing to think about what to try after that (assuming that things don't miraculously go away completely on that!).

 

This isn't just addressed to LLM, by the way, but anyone who can answer any of these questions; I'd be grateful of any answers from anybody who's come up against these questions before. It's all so confusing, isn't it?