Help with test results-idk diagnosis

[Friedbrain]

I've had abnormal CBC for about three years, ever since reducing steroids I'd been on since 2003. BUT they are only abnormal in the morning, when I get my blood drawn before eating or taking my meds (including steroids) in order to be consistent. When my blood is drawn at the doctor's office (random times throughout the day as well as after my daily meds), blood work is FINE. But the morning results are consistent, so it's no fluke. Meaningfully, many of my symptoms are worse at night/first thing in the morning. So here's my most recent morning values:
CBC:
WBC. 3.1 L (consistent)
RBC 3.67 L
Hgb 12.3
Hemat 36.2 (not sure how to calculate blood volume because water balance is a particular problem)
MCV 98.5 (consistently H, sometimes moreso)
MCH 33.5 (consistent)
Neutrophils 1.3 L (consistent)
Platelets 172 (have been abn low)
(Although she didn't ask for a retic ct, two ys ago both RBC and retics had been low at the same time)

Vit B12 680 (never been low)
Folate >24 (was high last time tested too)
Vit D 25

So that's it. I had a bmb 2 ys ago, which they botched and got nothing meaningful out of. I have autoimmune problems so one guess was "chronic disease state"-is that real or hand waving. I don't understand. Although I drink wine periodically, I'm not an alcoholic. What if any tests do I still want? Could any of this be related to nocturnal problems? Or autonomic symptoms? I read that elevated folate could be due to lysing RBC but my bilirubin (and alk phos, for whatever reason, abnormally low) is low too.

Thank you for thoughts!

[Marlene]

Were you taking any supplements when your nutrient levels were checked? If you are, then the test result will be artificially elevated. It's a good idea to stop all supplements at least 3-4 days prior to testing.

Your Vitamin D level is actually low or insufficient. Optimal levels would be in the 40 -80 range. You can read more about Vitamin D at http://www.vitamindcouncil.org/about...for-vitamin-d/

Regarding a high folate, you may not be utilizing the folate properly. It would good to have your homocysteine level and MMA checked with your next blood draw.

[Friedbrain]

Thank you for your thoughts. The doc did say to start Vit D supplements. What's strange is that I need to drink electrolyte supplement packets (which incl Vit Bs) in my water daily or I don't feel well. (Especially when exercising-without 2x in my water, I start violent shaking afterward). I don't know why.

But before the bloodwork, I skipped the packets (and no multivitamin) for 2d beforehand. The folate level was >20 last time, too, so, consistent. Counterintuitive.

Aside from worrying about infection from the neutropenia, I don't like the weird RBC readings even tho I'm "normal" ok because there are times when I don't feel like I have enough oxygen. (Like today with a paper mask on). I wish I had an explanation!

[Marlene]

If you are going to start Vitamin D I would suggest taking D3 since that is more effective than D2. A good guideline to follow is that for every 1000 iu's of D3 you can expect about a 10 point increase in your D levels. That would be a conservative dose at this point and it's not a hard/fast rule. We take 5000 iu's along with a vitamin K2. It's a good idea to include the K2 when you take D3. Jarrow, Life Extension, NOW and Thorne research are all good brands.

You may have noticed on other threads that vitamin D3 and K2 have helped others with MDS.

I would still recommend getting your homocysteine & MMA checked if you can. If it's elevated, supplementing with the active form of folate would be appropriate.

If you don't want to test, you can add in the bio-active forms of B12, B6 and Folate. I can suggest some approaches if you're interested. The B vitamins are very safe and most can tolerate them. I like to introduce things one at a time so that I can track any side effects.

Regarding your low ANC. Don't be too worried. You actually have enough to fight off any infection. My husband did fine with an ANC below 1 for quite a while. The vitamin D can help here.

I assume your doctor checked your iron?

[Friedbrain]

Thank you for your thoughts. They have gotten me thinking, and I hit upon something that really may make sense! Megaloblastic anemia! It would explain the low RBC (and retic, found the one time it was tested, after I asked it to be added), along with the other abnormalities. Although low folic acid can cause it, I'm thinking that, at the same time , inability to convert folic acid (my *elevated* level) would result in the same symptoms. I searched this site but really didn't find much on this diagnosis. But at least now I have questions to ask the doc. And no, she didn't measure my iron (unless that's hemoglobin?).

[Marlene]

Your doctor should have run an iron panel that includes your ferritin level (FE). Most of us track the FE and it's good to have a baseline established in the event your anemia progresses to the point of needing transfusions. Each transfusion adds about 250 MG of iron to your body and FE is a good indicator of how much iron you are accumulating.

Spend some time reading about MTHFR mutations as it relates to B12 and Folate. This site has lots of info...beware though...it informative and confusing at the same time. It's a complex issue and can get very complicated.

http://mthfr.net

B12, folate, b6, copper, d3/K2, iron and zinc are key nutrients for blood production and immunity. Of course everything plays a role but these are key.

[Cheryl C]

My nephew Ron has the MTHFR mutation He has the A1298C type of MTHFR. After a course of methyl guard plus he is much improved. I'm going to ask my haematologist if I should be tested as it's hereditary.

I agree with Marlene that neuts of 1.3 are sufficient. Mine have averaged around 0.6 for years now and I don't get a lot of infections. You get used to these numbers after a while! Low red blood results would be more concerning I think - and more dangerous.

[Friedbrain]

Thank you for helping "think out loud" with me. I've had bouts of severe neurological problems of unknown cause so I keep thinking that if I can figure out the rare problem with my body (because, even after 13 ys, docs still don't know), I'll be able to prevent future recurrences. So it will take thinking outside the box, and educated forums like these are a good opportunity for finding help.

So..update..doc sees no need to measure retics or anything else special. She says I'm not anemic and nobody cares about elevated folate.... True that hematocrit and hemoglobin are ok so dies it matter that I have low RBC (and that when my retics were measured, they were low, too? I was double checking the history if my bloodwork (going back 20ys, into my 20s), and I've almost always had high MCV. When my neurological health fell apart in 2002, my B vitamins were measured and folate was elevated then, too (I think B12 was sky high that time, too, but never again).

I don't exactly understand why it would be but..hypothetically...if my body has a problem with RBC, isn't it possible that it adapted (I'm an athlete) by making them larger (hence the consistently high MCV, sometimes high MCH)?

As an aside, I think I figured out the low neutrophils in the morning (which at times have been below 1000)-pseudo neutropenia. Really is a thing. Not sure why-the neutrophils apparently hang out at the blood vessel margin at a higher number than circulates in the morning, which us why the number can increase (double) by mid-day. Still trying to understand that but at least I have a name for it!!

[Marlene]

Most of what I learned regarding B12, Folate, and MTHRF was by researching things that would help the nervous system damage John acquired during treatment. I decided to focus on something that was really effecting his quality of life at the time. What I discovered is that what heals nerves/CNS also is key for blood/bone marrow.

Vitamins B1 and B2 are showing to be helpful in those with Parkinsons.

Blood serum levels are not adequate to determine B12 and folate status especially in the presence of symptoms.

You do have to be an advocate for your own health.

[GoodDay5150]

I am not a doctor, but I have been going through the never ending process of tests, blood tests, bmb, stem cell trans, etc etc for abt 4 yrs. My rec. would be an appt, comp CBC and chem, and bmb with another doctor. I was diag w/ PNH in 2011 by a Kaiser HMO hemo/oncologist who made sure that I was passed onto a spec clinic asap for further treatment/ stem cell trans, etc. Seeing a specialist who treats blood disorders on a daily basis can prob figure out what the issue is in short order. Good luck in your treatment.

Mario

[Cheryl C]

Friedbrain - I usually try to have my 4-weekly blood tests at around the same time each time as I found my white count varied through the day too - usually higher in the afternoon. BTW finishing off with cold after a morning shower can give your WCC a boost to start the day!