Feeling so drained and lifeless at the moment. Wondering if anyone has any idea how long it takes to bring levels up.
Folate 3.83 ug/L (greater than 5.38)
Ferritin 7.8 ug/L (10 - 291)
25Oh vitamin D 38.1 nmol/L
I have been taking Floradix 3 times a day since January 16th. I had also taken it in October and part of November when I run out. I make sure I take it with orange juice or eat something with vitamin C to help absorption.
I have also been taking Folic Acid 400mcg once a day and 5000 iu of vitamin D.
When do you think I should start feeling a little less out of it?
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chihiro
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I was severely vitD deficient and had 40,000iu x 7 days and 2,000iu daily thereafter. Took about 6 weeks to 'feel' the benefits but improvement in skin was visible after 4 weeks.
Ferritin was over range so I haven't had to supplement.
Thanks Clutter. Maybe in a months time then...need to be patient (not one of my virtues!!! )
400mcg folic acid isn't going to do anything to correct your folate deficiency. You need to ask your doctor for a 5mg supplement daily, and the usual length of time to take this before reducing to a maintenance dose is 4 months. And hasn't the doctor given you something for your iron deficiency? I'm not sure how much is in Floradix.
Oh bummer really? See doctor gave no guidance and when I had first looked at the bottle I thought it said 4mg and you had said that would be enough I didn't look again till I posted this and with my wonderful brain fog I couldn't remember the amount so got the bottle. Can I take 10 x day LOL ? I'll look for 5mg this weekend. No wonder my levels had gone lower since the summer...this amount was not doing a thing!
re: iron Nope my doctor told me I am not anemic therefore wouldn't prescribe iron tablets. I suffer with bad constipation as it is now so the thought of even more constipation wasn't too appealing so went for Floradix as I knew it didn't cause me trouble. I've just looked at the amount there is:
Iron 7.5mg x 10 ml and I take it 3 times a day so 22.5mg of iron per day. Why do I have a feeling you'll tell me that this isn't enough? I did tell the doctor that I would be taking floradix and he said he was familiar with the product and that it would be fine.
Well you have a lot to think about trying to get well, I'm not surprised the dose was mixed up. 5mg is only available on prescription and to be honest your folate result is clearly below range so your doc should be prescribing this, I'd push for it. You can get 800mcg from H&B and take several, but it's a faff doing that when you should be prescribed it. What happened again with B12? Having my own brainfog moment!
I'd push the doc for iron as well. I'm not sure on dosages for iron as my levels weren't as low as yours, I managed to improve mine just with Spatone.
I'm wondering if Spatone would work better than Floradix. Can't seem to find anything that tells me how much iron there is in Spatone :/
Do you have any links for dosage for folate deficiency. I can't seem to find anything for that either. Not having a very good googling day today. I'm just thinking that having something black on white to slap under the gp's nose might make him take notice.
By the way I totally know why I got it so wrong with the dosage...I'm and idiot...my brain went mcg must mean x 100 so thought 400mcg was = 4mg. If ever there was a homer simpson "doh" moment that would be it!!!
Hi Rod,thanks for the link. I'd looked on that site but managed to completely miss that page. It's complicated stuff isn't it? Really hard work to get my head around all the different numbers. I had read somewhere else too about Floradix being better than the high doses of iron tablets because eventhough the amount is smaller it is absorbed more easily than the tablets. I think I might carry on with the floradix and see if the levels improve in 7 weeks time when i have my next blood tests.
"Folate deficiency can be corrected by giving 5 mg of folic acid daily for four months for adults (until term in pregnant women); up to 15 mg daily may be required in malabsorption states. Maintenance is 5 mg every 1-7 days."
And here is some research stating anything under 8 should be considered as deficient:
"Serum folate levels under 8 μg/L (or 18 nmol/L) should be considered as a decision limit for folate depletion since a positive effect on homocysteine was observed. Fasting serum folate concentration should be preferred for assessing folate status."
You star! Thank you just what I needed. I was most definitely having a bad googling day for having missed both the Spatone page and the patient.co.uk page! Thanks again hampster. I'll order the folic acid if I don't get anywhere with the gp.
Forgot to say re b12. I was 360ish in the summer and was put on the loading doses. Then was 480ish in January. To refresh your memory my gp is the one that has levels of around 90 and told me he is fine so I can't have any more injections.
I was reading the patient.co/uk link and the bit in blue is very confusing. Are you able to explain it in plainer terms?
"Folic acid may produce a haematological response in vitamin B12 deficiency but may aggravate the neuropathy and also precipitate subacute combined degeneration of the spinal cord. Large doses of folic acid alone should therefore not be used to treat megaloblastic anaemia unless the serum vitamin B12 level is known to be normal"
I think that supplementing with folic acid will hide evidence of B12 deficiency. So I think it is considered good practice to make sure B12 is okay before supplementing with folic acid, or to take folic acid with B12.
According to wikipedia, iron comes into the equation as well :
I'm on shaky ground with this, so take this post with a pinch of salt. I hope someone else can explain what the difficulty is with taking these supplements.
Yes I remember now, your GP who is going to wake up one day wishing he'd paid attention to his B12 levels!!!
The folic acid / B12 warning is often misinterpreted, and I have been guilty of this in the past myself.
Basically taking folic acid will correct macrocytosis (enlarged red blood cells), even though you may still have an undiagnosed B12 deficiency. And since many doctors don't test serum B12 unless the FBC is showing macrocytosis, a B12 deficiency can go undiagnosed and continue doing its neuro damage in the background, even though the haemo signs have normalised.
So folic acid should never be given without first checking B12 status. Taking folic acid cannot in itself cause this damage, it is the non-treatment of the B12 side of things that is the issue.
If you know you are B12 deficient, and you are also folate and iron deficient, it is actually better to get going on the folate and iron supplements as soon as possible and start getting your levels up BEFORE having B12 injections, because without these in place the injections are pretty much wasted (which I think is what happened to your loading dose).
I personally think B12 and folate deficiency likely always co-exist, and if you're not going to get any more B12 injections from the doctor you should consider a) further more sensitive testing b) self injecting c) sublinguals.
Also in general you should take a B-complex with all 8 B-vitamins to stop the others getting out of balance, be careful with B6 dosage (max 60mg).
This is about UMFA (unmetabolised folic acid). Like you I haven't read too much about this, but I do have some thoughts.
My main issue is that people are normally given folic acid without giving them appropriate amounts of B12. So you are of course going to end up with UMFA, and also a functional B12 deficiency, because you are creating an imbalance between 2 things that work in tandem. I am no researcher and I haven't even read all the research, it's just my personal opinion. You shouldn't take folate/folic acid without B12 and vice versa.
I'll use the case of people on regular B12 injections as an example. There are some who have been injecting for years, weekly or maybe twice/3 times weekly, who can't reduce their folic acid supplement from 5mg per day without getting symptoms. The more B12 you take, the more folic acid you need. And all of these people say they would rather feel well day to day, than worry about UMFA research articles.
That aside, the other thing to think about is tolerance. It's like B12, some people get bad detox and over- methylation symptoms from methylB12, and this can happen with methylfolate. You need to start low and build up the dose, and switch to folic acid if you can't handle it (and the methylB12ers should try hydroxoB12 instead, or cyanoB12). There's lots of interesting stuff about over- and under-methylation on MTHFR.net.
I'm not really going anywhere with this! I think bog standard 5mg folic acid is great to correct your initial deficiency, and then once you have good levels and are going to a maintenance dose try switching to methylfolate. Or by all means try methylfolate from the beginning.
I personally alternate days 5mg folic acid one day and my B-Complex the next (which has 400mcg methylfolate in it). But I have weekly injections so need a high maintenance dose. I'm still tweaking it all the time, and that's what everyone should be doing, we're all different and even on an individual basis it's a moving feast.
Oh, and for every article that you read about the dangers of high folate, you'll find another in it's favour, here's one:
This is very interesting! I was prescribed 5mg folic acid when I was pregnant because of the sodium valproate I had to take. I was not prescribed any B12. I wonder if this may have lead to my B12 deficiency...
The other reason that makes me think MTHFR is because you respond to sublingual methylB12, you would probably also be good with methylfolate. You should head over to MTHFR.net if you want to explore this more.
Ok I think I get it. Folate and iron need to be at good levels for b12 to work well. Is that correct? So the fact that I didn't benefit much from the b12 is probably due to my low folate and iron.
Going back to doctor on Monday to talk about why he hasn't prescribed high dose of folic acid to correct my deficiency. Will go armed with the patient.co.uk page to back me up.
re: more sensitive testing. I'm sorry, I know you have probably told me before but is that the active b12 or are we talking about something else? The active b12 can only be done by referral to St Thomas is that right? I can't see my doctor agreeing to do anything about that with his views on the subject So how do I get that? Can I have it done privately anywhere?
Also wanted to ask you (sorry last question I promise...well for now anyway ). We have family member that is a doctor in another country. Now this is not his field at all - he's a chiropractor - and when I told him I was going to have IF tested to check for PA he told me "oh, but I thought you weren't anemic?" So my question is this...can you be not anemic and have pernicious anemia or do your bloods actually have to show anemia? :s hope it makes sense!
The anaemia thing is a common doctor error, and makes me want to pull my hair out. It is well evidenced in research that you don't have to have anaemia or macrocytosis to have a B12 deficiency. I'm going to link the BMJ Best Practice notes on diagnosis, worth reading through:
"However, a normal MCV, haemoglobin, and haematocrit are not useful to rule out tissue vitamin B12 deficiency, as many patients with vitamin B12 deficiency may have normal haematological parameters."
Another factor relevant in your case is your iron deficiency. This causes microcytic blood cells (small) which cancel out the macrocytic ones (large) caused by B12/folate deficiency. So the MCV will appear normal. This is also all in the Patient UK article:
At the moment I'm not very confident about the active B12 test, too many deficient people coming back with normal results. It doesn't actually pick up on functional deficiency, i.e. the ability to get the B12 from the blood to the cells where it's needed. Things like transport and methylation cycle defects.
The most sensitive test is meant to be the uMMA (urinary methylmalonic acid). There is more about this test on the following website:
This is the best test for children - more accurate and non-invasive.
What I don't know is the effect the loading dose would have on your result; if you were thinking about having the test it would be worth phoning up the test provider and asking.
I have had the normal B12 test (done as part of a big package of private blood tests) and I also paid to get the active B12 test on the same day. Unfortunately for me, I didn't know I had to be off B12 supplements for 4 weeks before the test. I only stayed off supplements for 5 or 7 days, can't remember which. I did find out (too late) that they can compensate to some extent for people taking supplements if they know about it at the time. But I thought I'd done everything right so I wouldn't have mentioned it.
As a result my B12 levels with both tests came back looking perfectly okay, even excellent, but I'm none the wiser as to whether my results actually mean anything. I certainly wouldn't trust them.
When blood testing is so expensive, I really wish that pre-conditions necessary for accurate testing were made clearer, wherever and whoever actually does the tests.
Edit : I don't know why I decided to have a whinge in the middle of your question ,chihiro. Very rude of me, sorry!
I'm totally with you humanbean, people on this forum tend to already be on B12 supplements so it's very difficult to get accurate testing done. I kinda grind my teeth a bit when new people post their serum B12 results and are then advised to go get some sublinguals. If they are symptomatic they should actually get some of these other tests first, or ask the GP to trial injections (it does happen)! For those on supplements already, 4 months off them before testing is being recommended on the PA forums. St Thomas' suggest 1 month, I don't think it's long enough.
It takes 4 months for it to get out of your system? I had my last b12 injection early October so my serum b12 test a month ago would have been affected by that? I've not had any b12 since then as per your advice a few weeks ago, but I do know that Floradix has some b12 so would any testing be incorrect because of that?
I really don't know, I think everyone's different. That's just what I've heard being recommended.
Serum B12 can stay "normal" for a long long time. Mine did for 6 years after my first loading dose, but the MMA test showed deficiency. You can't make any decisions on the serum B12 test. I imagine Floradix has a tiny amount, probably wouldn't make any difference to the result.
I realise I'm confusing things now. I'd wait and see what your IF test comes back at, in the meantime you can be working on upping your folate and iron levels.
Thanks Hampster! I'll start with convincing my doctor that he needs to prescribe high dose of folic acid and whilst I'm there I will ask what he plans on testing next. He had muttered to himself about IF but I want to make sure he is actually going through with that. Will play it by ear but if I can I'll try to push for the other PA tests. I have a feeling that if I just test one and it comes back negative he will stop there.
Tricky. Try and at least get IF antibodies and PC antibodies out of the GP, the other's are private tests anyway that you're unlikely to get on the NHS.
Vitamin C supplements will often "soften things up" and they help iron to be absorbed as well. I take 3 iron pills a day spread throughout the day (ferrous fumarate 210mg that I buy from Lloyds pharmacy) and I take 1000mg of vitamin C with each one. I've read of some people taking even more than that because it is supposed to help the adrenal glands as well. Vitamin C with bioflavinoids is supposed to be the best for us.
You have to be careful of taking iron well away from thyroid medication, but you probably already know this.
No thyroid meds to worry about but I have seen it mentioned lots of times. Thanks humanbean That's interesting about vitamin c. It's on my list of to buy as someone else had mentioned it would be good to take it. In the meantime I was making sure I took the iron with something rich in vitamin c. I suffer with terrible consitipation..sometimes it can be a week before I manage to go (sorry tmi!).
It has taken me well over a year to get levels up and feel a difference
A year...oooookkkkay then! I really need to chill out about it and just be patient. I guess 3 weeks really isn't long enough when my levels are so low. Were your levels very low too?
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So how do I get that? Can I have it done privately anywhere?
). We have family member that is a doctor in another country. Now this is not his field at all - he's a chiropractor - and when I told him I was going to have IF tested to check for PA he told me "oh, but I thought you weren't anemic?" So my question is this...can you be not anemic and have pernicious anemia or do your bloods actually have to show anemia? :s hope it makes sense!
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