I'm posting the link above to my latest blood results along with the comments from the doctor at the lab.
I've attached my October 2016 results for comparison too. Annoyingly the b12 unit measurements are different (one is pmol and the other is pg making comparing them more tricky but I've attached the conversions).
I've also included graphs comparing Oct 2016 and Jan 2017 results to show where things have gone since starting the b12 etc.
I supplemented with sublingual methyl b12 between November 2016 and the 9th of Jan was my last spray.
I only left a week with no supplements whatsoever before doing this last test so I guess that effects the b12 serum and possibly the active b12 too.
My Active b12 is now above range and my serum b12 is 666pmol/l
I'm still very tired and achey but the burning skin on my right leg seems to be easing a little. I have brain fog quite a bit and some gastric discomfort/ constipation. I don't particularly get heartburn but do experience discomfort below my left shoulder blade. More recently my scalp has become quite itchy too and this isn't something I've ever experienced. I've no longer got tingling feet but my legs are a little resless in bed.
My energy levels are down quite a bit and I'm finding myself laying in bed much longer than previously. Oh and I'm sighing a lot apparently. I guess that's when I feel out of breath. My legs never really ached before but they do now almost like I've been cycling or for a run but I haven't.
I'd stopped supplementing after being referred to a hospital doctor and reading on here that I maybe should stop taking b12 if I wanted to get a proper diagnosis.
My question is what do do next. Do I stop? Do I keep supplementing with such a high active b12?
Is the high MCHC really "insignificant" like the lab doctor is saying?
Oh and lastly is it ok to add folate again now that my b12 levels seem to be up there as I'd not been taking any after reading on here not to until I'd started injections (that I never got)?
Thank you
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If you have macrocytosis it doesn't disappear overnight but is corrected as old red blood cells die and new ones are formed. red blood cells live for about 4 months so if you had been supplementing for 2 months you will still have a degree of macrocytosis going on.
If the methyl is working for you then I would stick with it - you would need to stop for months for a test to be meaningless. However, if you are developing other symptoms then you could try supplementing with hydroxo/cyano instead, or adding a bit of adeno-cobalamin (you can get sublinguals). People find that they respond differently to different types of cobalamin - some find methyl doesn't do anything for them. I find it helps with some symptoms but not others so actually use a mix of cobalamins.
Although generally people don't have problems converting methyl to adenosyl there are some cases on record of people who did so one possible explanation for the symptoms might be that your body is managing to correct the processes that use methyl but doesn't have enough adenosyl for the processes that use adenosyl and can't produce any adenosyl. Both hydroxo and cyano can be converted to either methyl or adenosyl.
Thank you Gambit62 . Do you or anyone else perhaps know if an increase in MCHC after supplementing is something that happens? or if something else is deficient. My folate has increased since the last test but I wondered if it's still not high enough to correct MCHC?
I initially started supplementing folate but stopped a few weeks ago not knowing if the b12 levels were rising and concentrated on getting more from food alone.
A reply to an earlier post suggested that folate supplements could cause damage before b12 levels are raised high enough to heal.
I've just added graphs to the link above as the lab provides comparison graphs for each element of the test do you can see the changes between October and Now (Jan 17)
Is there any advice out there on how much b12 to take if active b12 is really high?
I was considering staying off it until I get to see the hospital physician and maybe doing another test in a month to see if it's dropped. Trouble is i'm feeling weaker off it despite the high levels.
I really wish GP's had more resources to be able to take a real interest in things and to monitor and guide appropriately.
As I understand it Steap Folate works together with B12 and gets "used up" processing it,
"Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.
Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, lima beans, salmon, orange juice, avocado, and milk".
(Vitamin B9 (Folic acid) University of Maryland Medical Centre).
Your serum Folate level is only just over mid way as is mine. Personally I take 1 – Folic Acid 400μg tablet every day and have done for as long as I can remember and that is in addition to what is already fortified in my daily breakfast cereals of All Bran and Grape Nuts. However I've had P.A. for 45 years am on three weekly B12 injections and have no idea how much folate I can absorb naturally having had two thirds of my stomach removed at the age of 17 back in 1959.
I do remember my mother shouting at me across the table to "eat your greens Clive"
MCHC is, a ratio between MCH and MCV. Both MCH and MCV will be raised in macrocytic anaemia - which is one of the results of an on-going B12 deficiency, so not sure it would be affected by the B12 - think Foggyme is somewhat better on the blood tests than I am so hoping she can help.
It is probably raised in your blood results because your MCV has gone down but your MCH is still at the high end ... Are you supplementing iron?
Raised MCHC is called 'hyperchromia' and there are a number of possible causes but I'd have to do some research to find out if the amount you have above range is actually significant - if the lab report specifically says that its not significant then I would be inclined to go with that. If you are supplementing iron then it may be that that is the cause and you should stop with the iron supplementation but really I would speak to GP about it.
Managing a B12 absorption problem isn't about managing B12 with regards to test results - as the blood tests don't tell you what is happening at the cell level which is what really counts. The serum and active tests can be skewed by a number of factors when supplementation has occurred so their ability to be guides to what you need to do is at best limited. MMA and homocysteine tests are more likely to be useful - they will indicate what is happening at the cell level - as they are two nasties that build up if your body doesn't have enough B12 at the cell level to recycle them into useful building blocks. Both can be raised because of other factors - eg folate being low in the case of homocysteine - so as with everything B12 need to be interpreted in context, so back to working with GP.
Hi Steap. First, sorry I didn't respond before....didn't get notified by your tag...though I did receive the one from Gambit62 . (HU site seems to be a bit 'wonky' - that's a technical term - at times 😖.
I've had a look at your results...the graphs were excellent and made it quite easy because the best way to 'do' blood interpretation is to compare all elements against each other, over time, if possible. A bit like doing a jigsaw - each element means nothing unless you have something to compare or match it against.
So...looking at all the elements in October and January...
MCHC estimates the amount of haemaglobin inside red blood cells. The pattern of rising haemaglobin and ferritin, over time, can be indicative of over supplementation with iron...this could lead to haemachromotosis (too much iron in the blood), so Gambit is correct. It you have been taking iron supplements it would be better to stop taking them and ask your GP to monitor your ferritin levels (they look quite high now so you don't need them to be any higher and probably wouldn't need another ferritin test for at least three months).
High MCHC can also be cause by B12 and / or folate deficency but I don't think that's the case here, since other indicators (MCV and MCH) are falling. And the MCHC is only slightly above the reference range. So, the most most likely cause, taking rising haemaglobin and ferritin into account, is...over supplementation with iron.
The rising RBC is indicative of a resolving iron deficency anaemia and is in line with the above overall picture.
Note: if you havn't been supplementing with iron the slightly raised MCHC is probably indicative of a previous macrocytic anaemia, which is now resolving, as the falling MCH, MCV and RDW show. (But not so sure that's the case here, since RBC and haemaglobin are also raising...
The rising levels of active B12, serum B12 and folate is consistent with the falling MCH, MCV and RDW - looks like you may have had - or had been developing - a macrocytic anaemia - which now appears to be resolving because of B12 and folate supplementation.
So...looking good on the B12 / folate side...but take care with the iron - too much is as bad (if not worse) than too little, and supplementation is best done under medical supervision, with regular blood tests. Your GP might like to run a full iron panel (serum iron, transferrin and saturation), along with ferritin - only way to assess true iron status.
I got my appointment through to see the hospital physician today but it's not until mid March.
I don't think I want to chance being off b12 until then so I'm just going to use it daily from now but limit it to one or two 500mcg sprays a day.
I actually have 100 vials of hydroxycobalamin 1mg injectable solution but didn't dare use it without the doctor confirming my situation and getting at least the initial prescription on my records:
Worryingly I'm still losing weight but they don't seem interested.
Limiting the B12 won't lessen the impact in terms of skewing serum B12, active B12, op potential MMA / homocysteine blood tests. And stopping now is not likely to result in lower levels before March (not enough time).
In terms of the Hydroxocobalamin injections - in rare cases the first injection can cause anaphylactic shock, for which immediate urgent medical attention would be required. So any first dose should be done under medical supervision.
Understand this is what you intend but thought it best to mention in case you get desperate and are tempted to have a go at home.
Re weight loss - same thing happened to me...in six weeks...not nice...and astonishing that not one medic seemed to think there was anything to worry about!
Yep...no need to test B12 once B12 supplements have started...unless looking for low levels...and yours are okay and are likely to remain so if you keep taking the B12 (though of course B12 levels tell you nothing about what's happening at a cell level).
FBC doesn't need doing too often....takes changes a while (three to four months) to appear properly in results...unless something else other than B12 / folate deficiency is going on as well.
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