I wish I'd known about the B12 yesterday - I asked my family doc for a B12 test and just came from the hospital. On the req it just said "B12". I did read here that even if your B12 levels come back normal, you might still benefit from extra B12.

I had a call from Novartis to let me know exjade was gluten free. I am taking another med where the filler is lactose, I don't think I have a problem with lactose but I did read when you go gluten free you should also go lactose free for the first while. I think I have more of a problem with exjade than lactose.

Deb

high folic acid? and ditto with diet
 

If I read this thread correctly, it is possible to have elevated Folic Acid but not be absorbing? Both times my folic acid levels have been measured, they've been elevated (years apart). The first time, I think the B12 was also elevated, but it is normal now. I had neurological problems so that was a logical thing to look at, but docs were not concerned about elevated levels.... ?

Also of interest is the mention of needing to eat low-carb and feeling better. I have been eating low carb for years for this reason. If I eat carb-normal meal, I either crash with fatigue (for HOURS); or if it's sugary, may experience tachycardia first before crashing. I don't know if anyone else has experienced this, but at times (usually around ovulation, which is also a time when I experience autoimmune-like problems), I felt achy/flulike/feverish. I hadn't felt like that in a while, but last month (around ovulation), I was stressed and having to make doc appts, so grabbed a coffee and coffeecake from Starbucks (which I *rarely* do). OMG, I felt so flulike within an hour or two, for the entire rest of the day. I also had some bloodwork in the midst of feeling flulike, and my neutrophil count (the problem I'm experiencing, with chronically LOW neutrophils) had tripled and my lymph count was abnormally low. I CLEARLY (to me lol) had an immune response to eating the sugary snack, but I don't know what it means or who to talk to about it.

Hi,

Is it the carbs, or is it more specifically wheat? Because I used to feel the same way - high carbs = feel bad, low carbs = feel good. But I realize now that I am gluten-free, that potato, corn and rice don't bother me at all, and possibly what bothered me in the past was the wheat, because wheat is *everywhere* (soy sauce, salad dressings, chicken stock, beer, etc).

I am interested in the high B12 and folate too, I think it's a good question. Although I would *think* that if it was tested in your blood, then it has already been absorbed? I do think there's a difference between serum and tissue levels.

I have neutropenia too.

Deb

Hi Deb,

Serum B12 testing is the least accurate way to measure B12. And when you have your blood drawn, you need stop taking your supplement otherwise, you'll get a false reading. I've heard anywhere from 3 days to one week prior to testing.

A more comprehensive check is to have your MMA (methylmalonic acid) and homocysteine checked at the same time. There are other test which I think are newer and not well utilize yet and they are HoloTranscoblamamin and Unsaturated B12 binding capacity.

Regarding blood levels and tissue levels, I too agree there can be a difference. You also hit upon a key distinction...absorption vs utilization.

Glad to hear Exjade is gluten free.

M

Got my results:

B12 = 358 (this is after a couple weeks of supplementation).

Other counts:
- HGB 80 (in my system of calculations, this is a drop of 4 points less than average and the 10th week in a row of lower drops which is a record)

- WBC 1 (same as last time)

- Platelets 49 (was 52 the last 2 times, but 27 the time before that)

They didn't have Neutrophils or ferritin yet.

Deb

Well that's low. Good thing you're working on getting that number up. Low normal is not where you want to be.

Yeah, and that's after 3 weeks of daily supplementation.

I read that 500 might be a better starting range?

Deb

Hi,

I saw this article and copied a small section.

.
Deficits in vitamin B12, if left untreated, can cause a number of health problems such as, loss of mental alertness, neuropathies, nausea, muscle weakness, digestive upset, depression, irritability, memory impairment, poor concentration and water retention. The normal level for vitamin B12 is 180 to 914 pg/mL; although, symptoms can start to occur if levels fall below 400 pg/mL. The physicians at Missouri Bariatric Services recommend vitamin B12 levels be greater than 400 pg/mL. Sleeve gastrectomy patients need 350 to 500 micrograms of vitamin B12 daily to prevent deficiency. Only 1% of vitamin B12 taken orally is absorbed. Vitamin B12 is best absorbed when taken sublingually (dissolved completely under the tongue) or as an injection. If taken as an injection, vitamin B12 should be given in a dose of 1,000 micrograms once a month.

It was on a University website about nutrition and weight loss surgery.

I have 1000mcg via injection every month.

Hi Chirley,

Thanks for posting this. Many who have undergone weight loss surgery ended up vitamin and mineral deficiencies. B12 being one of the most missed. They ended up with multiple issues as you noted. If caught early enough, many of the problems can be reversed.

The absorption of B12 is very small when taken orally. That's why the larger doses are needed and it usually works best if taken on an empty tummy.

I'm glad they're treating your B12. For many though, one shot a month is not enough to get the levels up. Many doctors will do loading doses to get the level up and then go on a maintenance dose. There have been many studies confirming oral B12 supplementation is just as effective as injection.

Anyone with serum B12 below 500 is suspect and should be investigated.

Saw your other post...glad you're doing better.

I will bring all this up with the internist when I see him, right now I am between doctors. Hopefully the new one can look a little more in depth at things that might affect energy levels and apply a few tweaks here and there. For so long this blood disorder has been front and center I think everything else got ignored. That's not good enough.

Deb

I think that happens a lot. The blood disorder takes front and center stage. So many things can be overlooked or dismissed as a result. Their priority is to work on the blood disorder. Quality of life and other seemingly minor complaints go on the back burner. I understand the need to prioritize. I think having a doctor that's focused on your general health and wellbeing can be helpful.

I just got a printout of my B12, I see it is measured in pmol/L, and the normal range is listed as 133 - 675. (Mine was 358).

I tried to convert it to pg/ml.

I found a conversion online of

1 pmol/L = 1.355 pg/mL for B12

So I multiply 358 * 1.355 = 485 pg/ml

So maybe not as low as originally thought?

Deb

Both of my docs (GP & Heme) are concerned & sensitive with Quality of life and other health issues. My heme told me his job was to keep me alive as long as possible with a good quality of life acceptable to me, not him.
Both my GP & Heme understand and fully support a decision not to go ahead with transplant, knowing that to some the possibility of having to endure what a lot have to endure for years is unacceptable to some.

Deb...were you taking your B12 at the time of your blood draw? If so, the test results will reflect it in that they will be artificially elevated. By how much? I don't know. I can take up to 3 months to restore your levels and then anywhere from 6 months to a year for repairs.

Marlene,

Yes, I was taking the daily supplements for 3 whole weeks, so I guess the number I got was higher than it would have been 3 weeks previous.

I sure wish I knew how long to expect for things to heal. I've been GF for 3 months as of yesterday. Still feeling better, so I guess that's the main thing, and 3 months isn't all that long I guess.

Deb

It's difficult to know. I would think anywhere from 6 months to a year. The challenge is to know what else needs correcting. Getting your digestion functioning well is key. That in itself can take a while. Exjade poses its own set of challenges as you know. John's recovery was at a snails pace but slow and steady is not bad either.

I believe your body prioritizes what needs to be fixed. And it doesn't always correspond with what you want.

Fresh air, sunshine, exercise, good nutrition, quality sleep and stress reduction. Sounds simple but difficult to follow all the time.

Slow and steady is fine, as long as it's steady!

Mthfr
 

Marlene, thanks for posting this link. Its a good starting point for people reading and learning about MTHFR.