Hello All. Please could I pick your brains with a couple of quick questions, prior to a Gastroenterology appointment on Monday. As is usually the case, I may have work hard to get any kind of successful outcome and want to clarify my thinking so I don't look like a numpty!
Recent blood results show B12 >2000 (not surprising, I self-inject every other day) but I was surprised to see that my serum folate level is >20ng/ml (reference range 2.6 - 17.3). I have only been taking 400ug of folate daily.
So...could this be indicative of some kind of methylation problem? Are there other reasons why the folate level should be so high?y
Also - I had considered trying methyl folate. Would It be so safe to do so with a folate level that is already so high?
Now to the iron...I have been self supplementing with iron for a year, prior to three months ago, when serum ferritin came back as 14ng/ml (10-420) - serum iron not done. GP stated this was ok but I persuaded the practice nurse to prescribe a three month course of ferrous fumarate.
She re-ran the serum ferritin last Friday. This showed a small improvement (up from 14 to 36ng/ml (10 - 420ng/ml). She also did a serum iron and this was 14umol (reference range 14 - 28umol). These look stubbornly low to me.
Do you think it is appropriate (or necessary) to ask the gastrologist for an iron infusion? Or is this just another one of those waiting games that we have to play?
Don't want to look like a whimp but this has been going on for so long and I feel...well...really really ill!
P.s. I have hychlorhdria, gastric paresis, and more than likely gastric atrophy (asking gastro about this on Monday). I've been taking the iron with orange juice and also supplementing with vit C and HCA (amongst many other things).
And just to throw something else into the mix, I have a serum creatinine level of 54umol/L (60 - 120). Something to do with muscle mass, I think. Perhaps I'm just wasting away 😀. Any ideas?
Any comments and suggestions would be very much appreciated 😀😀
P.s. Would I be right in thinking that the low iron and high folate levels could potentially mask Macrocytic anaemia?
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Foggyme
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400ug is the RDA for folic acid, so if you are also getting plenty from your food that could put your levels up - however, the levels being high could also be an indication that you aren't using the folic acid you have because of methylation problems.
I'm not aware that there is anything that would make taking additional folate in methylated forms a problem.
can't help on the iron
creatinine may be a consequence of the gastric atrophy as it can be indicative that you aren't absorbing much protein from your diet.
Folate - You're taking twice the daily amount recommended by the NHS - nhs.uk/Conditions/vitamins-... - so it's no surprise that it's a bit high. But it's nothing to worry about. Even people with a double-dose of MTHFR mutations are still capable of making methylfolate, although at a reduced efficiency, so I doubt that's the problem. But it wouldn't hurt to swap folic acid for methylfolate for a month or two - just to see if it makes any difference.
I reckon the iron problem is probably due to poor absorption. Are you taking your iron with the Vitamin C? Ascorbic acid (Vit C) and citric acid both help get iron atoms into solution. I doubt they'll go for an iron infusion. My levels were lower than that last year and they decided against an infusion.
Gambit62 probably has it right on the creatinine.
The iron and folate could mask macrocytic anaemia, but it's highly unlikely that is a problem you're going to be suffering.
Thanks fbirder. It's all so complicated! I had thought that folate supplements were needed with high doses of B12...perhaps I shouldn't be taking this supplement at all?
So hmmm....methyl folate or not...will have to ponder.
Think you're most certainly right about the poor absorption of iron. Yes, I do take vitamin C with the iron. From what you say, it looks like an iron infusion will be out of the question. So I'll just keep popping the iron tablets.
Lack of protein does 'fit', considering stomach issues.
It's all such a tease...be nice if we could simply inject all we need and be done with it.
Your folate levels are only just above the 'normal' range, so I'd stick with them.
The amount B12 you take has little bearing on the amount of folate you need. It's a bit like petrol and oil in your car's engine. You need enough of each of them for efficient running. If you keep your petrol tank topped up, or if you run with it permanently near empty - you still need the same amount of oil.
I would give the methylfolate a try - I'm certain it made quite a difference for me.
But I still have a lot of my symptoms - neuropathy and fatigue being the worst. The neuropathy has got worse over the last year, fatigue has improved - but still worse than it was two years ago.
Hi Foggyme. Re. absorption issues, you could try taking sauerkraut - this plus a gluten free diet seems to have eliminated all my gastric, H/Pylori, IBS, leaky gut problems:
"Dr. Mercola sent his sauerkraut off to a lab and reported the findings of probiotics saying, “We had it analyzed. We found in a 4-6 ounce serving of the fermented vegetables there were literally ten trillion bacteria.” That means 2 ounces of home fermented sauerkraut had more probiotics than a bottle of 100 count probiotic capsules."
"In The Gluten Summit, 2013, Dr. Natasha Campbell-McBride, MD, told Dr. Tom O’Bryan, ““With every mouthful of sauerkraut you’re consuming billions of beneficial microbes which will be killing the pathogens in your gut driving them out and replenishing the beneficial flora in your digestive tract.”
"Cabbage is high in anti-inflammatory properties, vitamins A and C. Cabbage also reduces lipids in the bloodstream. When cabbage is fermented into sauerkraut the fermentation process opens up the cell walls accessing a higher ratio of vitamins. It has been said that sauerkraut has 200 times more vitamin C than the head of cabbage before fermentation."
So sorry your neuropathy has got worse. And the fatigue's a real killer! How can you explained to anybody that you've just got up...but are waiting for bedtime!!! But can't sleep!
Anyway, off I pop...thanks for the advice Fbirder.
So sorry to hear your not feeling well. When I was found to be low in B12, I was also iron anemic. I used Gentle Iron from Solgar, you can get it from Amazon or Swansons vitamins. I have used Swansons for years, they have good supplement prices and are reliable. You can Google them. The Gentle Iron is chelated iron and don't ask me how it works, but it got my iron up from 30 to 76 in about 6 months. I did take 2 a day as per my docs instructions.
Maybe try switching iron products and trying the methyl folate and hopefully you'll start feeling better, stat!
Yes, if the fume rate isn't working too well it may be worth switching to the bisglycinate in 'gentle irom'. Although I think there's a lot less elemental iron than the 105 mg that Foggyme is used to.
Yes it's true it's only 25mg. a capsule so two would only be 50 milligrams. But something about it being chelated? seems to make it very effective, at least for me. And since she's not getting results from the form she's taking now it might be worth a shot! Sorry to talk to you in the the third person, foggyme!
Not a problem Ndodge...you can talk about me in any person you like!
You've made me curious. Think I'll have to read about chelation...something to do with the bonding on molecules and ions to metal ions, I think, but no idea how this works or what it means to the body! Interesting!
Ha ha. That's good to know I can talk about you! In any person!
Something like that on the chelated form, foggyme. I just know that chelated minerals have a good rep. It worked really well for me and it never upset my stomach. Plus it says to take with food which was nice because I remembered to take it since I take all my supplements with food.
I don't think chelation is the answer. bisGlycinate (the form of iron in Gentle Iron), fumarate, citrate and ascorbate all have two, or more, chemical groups that can bond to an iron atom in a chelate. It is the chelation that makes the iron more soluble.
In contrast, with iron sulfate the iron and sulfate form individual ions (charged species) which makes it more difficult for the iron to dissolve - especially at low pH.
Hi Ndodge. Many thanks for your suggestions. Getting the iron in seems to be a bit of a tease! I'm also going to give the methyl folate a try, so we'll have to see how it goes.
It's amazing how many 'tweaks' have to be made to keep health on track!
Sure I'll be much better soon. Will let you know how it goes.
Yes, it is! I was also very low in vitamin D at the same time as the iron & B12, so I took vitamin D supplements for months only to find out on being re-tested that my D levels had dropped even more! I can't absorb D through my digestive system apparently and so have to take sublingual D drops. Makes me wonder what else I'm not absorbing properly.
Hi.... Not surprising that your folate levels are a bit high. The RDA for folate is 200ug that includes what you have in your normal diet. Mine went up from 9.8 to 15.1 (range 3.9 to 14) in 5 weeks of taking 400ug folate. I have now changed to methyl folate and only take it twice a week its probably not very safe to overdose on folate.
Macrocytic anaemia would be indicated if your haemoglobin is low and your MCV. is raised?.... seems unlikely.
Don t know much about creatine mine is 56 (55-100). Is that low?
You are right about it being hard work. Every step along the way seems to raise another question...still upwards and onwards, I hope you get some answers from the gastroenterologist and feel better soon.
Many thanks Pugdogs10. I'm changing to methyl folate and will take it twice a week, as you suggest, but drop it if folate remains high.
MVC AND Hb right in the middle of reference range, so you're probably right about the Macrocytic anaemia - most unlikely.
Creatinine - Gambit and Fbirder suggest that this may be because of lack of protein, either due to malabsorption or having insufficient in diet (know I need to increase how much I eat, so will make super human effort). I've also read that women t nod to have lower creatinine than men due to lower muscle mass. So...not something I'm going to worry about (but will flag to gastro - will let you know if he says anything other, but don't expect he will).
So...on with the hard work. Thanks for your help. Keep well xx
Hi again...the haemo didn t mention anything about creatine in his report with the blood results so he obviously did not think it is a problem in any way but I will have another look at it now. Thanks for the info. Take care.
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