Is it worth getting mma and homocysteine levels checked once on b12 injections? I’m not responding well as I’m still have lots of original symptoms and have multiple deficiencies with pancreatic insufficiency so trying Creon on advice of gastroenterologist.
Wondering if anyone else has tried Creon to improve absorption of vitamins and minerals
Thanks
I don’t think it’s worth getting MMA or homocysteine checked unless you have a reason for believing your b12 is not getting into your cells. If you have EPI, as I do, Creon is not an option it is absolutely essential and will be for life. It makes a huge difference to absorption. What is interesting is the number of people I’m seeing who have EPI coexist with PA. I also take a megadose of Vitamin B1, 1500mg a day in 3 x 500 doses. B1 supports getting energy from food and reduces tiredness.
That's really interesting, thank you!
At times I crave the taste of Thiamine tablets - a sure sign I'm deficient. I've been much better since I've increased my B vitamin intake and suspect I still have room for more Thiamine (B1).
I was really sceptical and it’s a huge dose but the difference is very noticeable
And when you start out sceptical, you know it's not placebo effect don't you! (Not that we ever think it is, but it increases our standing against the doubters.)
Absolutely!
Creon is a life changer for me.
Because the nutrients in food are usually more available and they naturally come with other "magic" compounds like antioxidants and so much more that is good for you and help absorbtion, if you can use Creon to digest your food to make the nutrients in it available to your guts to absorb, then you have a much better chance of getting the right things into you.
And it means that you digest your food rather than it turning to compost in your stomach so you are less prone to wind and SIBO (Small Intestinal Bacterial Overgrowth).
I had got pretty desperate for nutrients when I started Creon about 2 and a half years ago and wasn't able to absorb anywhere near enough, whatever I tried. Creon improved everything quite a bit and I was much better for a while. I gradually went down hill again last winter and then, on the advice of a specialist pancreatic nutritionist, increased my Creon significantly and this is the best I've been for years.
I still need daily 1.5mg B12 jabs but to give you a couple of examples have managed to cut my methylfolate from 10+mg/day to 3mg, with about 800mcg of folic acid from my multivitamin and mineral supplements, and I've reduced my iron supplements from 80mg iron bisglycinate (highly available) plus 14mg ferrous fumarate (moderately available) to a basic 56mg of just the ferrous fumerate. I'm more well, and able to do more too, because I'm finally getting some nutrients from my food - on less than half the equivalent supplements.
**note to people without severe EPI and malabsorption problems - these are normally dangerously high intake amounts and are in no way any intake guide. It is only because I absorb such a tiny percentage of what I eat/take that these figures are so high. They are only for illustration of the potential improvement I've achieved with Creon and nothing else. **
Plus it comes with the added bonus of less bloating, pain, loo trips, unpleasantness, nausea, etc, and I haven't needed treatment for SIBO for 8 months - and I don't feel like I'm living with it either. I had got quite scared of eating and I'm mostly OK now. I suspect I'm probably heading towards Type 3c diabetes as I now repeatedly react badly to fast carbohydrates (sugar, processed/white flour/potato) so I'm still losing weight gradually - even with the Creon I have an aversion to fats and it tends to upset my innards - but if I have to reduce my Creon (because my Dr's dispensary messes me about over them - would you believe?!?!!) I get bad guts and I lose weight a lot quicker. 😔
Creon is not a drug, it is only the enzymes that our bodies should produce if they didn't have EPI. So take them like you can imagine your body reacting to food - as you start to eat your guts receive chemical messages from your brain, stimulated by the sight and smell of your food, and get to work producing the enzymes needed to digest the food when it arrives in your stomach. This is why you can suddenly feel hungry if you smell a good food aroma - and what advertisers use to sell food with pictures!
If you have EPI your pancreas can't produce the enzymes so you have to provide them in the form of Creon. Take your first capsule with your first mouthful of food and then take another a couple of mouthfuls or so later, and so on throughout your meal so they can mix evenly throughout the food in your stomach and digest it as if it was happening naturally. Each capsule's effectiveness lasts for about 15 minutes.
If you still have some exocrine function left then you may only need 2 or 3 capsules per meal and may get away with small amounts of light fruit or pure carbs (sweets) without needing any Creon. I've got to the point that even fruit smoothies cripple me without Creon so it's just a bit of a case of trial and error. Lettuce always surprises me - it's over 90% water anyway and doesn't have much to it even if it's dried (like dried herbs) but I need lots more Creon than I think I'd need for it!
If you take too much (or take some and then don't eat in the time frame you expected to) or your guts just have a paddy and your food goes on a rapid exit, it can make your bathroom trips smell of pigs and it can make your tail pipe sore, but for most of us that's as bad as it gets - it won't harm you! So don't be scared of taking them - they nearly always help massively.
Thanks for that! I was a bit wary but as I seem to be struggling to maintain levels and am so exhausted and this is the first glimpse of a way forward so I am prepared to try. I don’t think I am severely deficient they didn’t really indicate I haven’t had any follow up yet just about to start first month after phone call from gastroenterologist. Good to hear it made such a difference to you so I can view it all more positively. Did you have to keep testing levels of vitamins and minerals? Or did you adjust according to how you felt? I’m aware of toxicity issues with d and iron I think I’m low in all the fat soluble as well as b vits and as you say all the micronutrients in food contribute to wellbeing.
Fingers crossed!
Getting blood tests done here is really hard work and such a slow process it's not really worth doing unless you end up in A&E.
I am very careful to be scientific and cautious but go by educated guesses on symptoms. If something repeatedly works when I try it and gets worse if I withdraw it then I go with it.
I retest this every so often so that I don't get into an overdose situation - I know if I reduce something and get symptoms again I'm running about right at the levels I was at.
I got tested by my GP for fat soluble vitamins as I take Creon for EPI. Mine all came back fine and well into the range. She tested other vits and micronutrients and some were deficient notably B1 which is also used by the pancreas so no surprise there. It is worth getting them tested as then you can tailor what you need
I only take 2x25000 with a meal. Do you take more? I have had SIBO several times now and you’ve got me thinking I may take more.
I get three months supply at a time!
If knowing your MMA and homocysteine levels are better would help and encourage you, then yes, it is probably worth getting them checked.
If the knowledge isn't going to make any difference to how you feel or your course of action then, depending on how easy/costly it is then, probably no.
It's really well worth asking the question on here because you will find yourself agreeing, or disagreeing with the answers you receive and the direction you gravitate to will clarify how you feel in your mind. 😃
My MMA was tested after starting B12 injections because I was not reponsive to loading dose and worsening on maintenance frequency. GP suspected that I had functional B12 deficiency so also had renal tests done and later SIBO breath test to rule out small intestine bacterial overgrowth. This diagnosis was confirmed by the blood testing lab as MMA was raised.
I was given 2 injections a week for months. My MMA remained raised for three years from discovery of B12 deficiency - and finally had dropped into range on the 6th test. Homocysteine was found to be normal.
I still require frequent B12 injections to control symptoms, but self inject now.
So for some people, it is worth having MMA checked - as long as both renal function and SIBO are checked and eliminated as cause if found raised.
Thanks that’s worth knowing. I think I will get it done as I don’t seem to get much better on fortnightly injections. Hoping the improved digestion will help and I know I need to get my folate ferritin etc up from low end of normal.
Yes, these were both low end for me too - which GP thought could explain hair loss and bleeding gums, so got 3 months of tablets for both.
Vitamin D: was found to have osteoporosis of the spine, osteopenia of neck - so please get this checked too if you haven't already. Got vitamin D and Raloxifene prescribed by rheumatologist.
Worth getting all these checked - then monitored if initally low. It took me a couple of years to get both ferritin and folate to optimum levels and behave there. Last Dexascan showed osteoporosis reduced now to osteopenia of spine - so doing quite well lately.
None of this is simple, is it ?
Yes I have osteoporosis now low vit d have to maintain all year round just feels like everything is falling apart and I’ve got pills for all sorts now! Good to hear you have reversed the osteoporosis I didn’t know that was possible
No, me neither ! I was told the answer was to "Walk, walk, walk" - which of course at the time wasn't really possible, but as B12 deficiency symptoms improved, I was able to follow her advice.
Risedronate was giving me jaw pain so I stopped it and was given Raloxifene instead - which seemed to help with improvements over time, but who knows if it was this change, the ability to walk for longer or gradual improvements from vitamin D3 prescription ?
I now don't need another Dexascan for two years, which is a good sign, and the rheumatologist sensibly is not going to stop a successful treatment regime.
I had very very low B12 and dangerously high MMA and homocysteine. (like twice above the high range) Once I started injections, my MMA and homecysteine came down to normal really fast, which really encouraged me to continue injecting and calmed all my doctors down. I saw a difference after only 2 injections and the next test was after about 8 months of injections and both were normal. They tested my B12 but I paid no attention to the results. I just needed to know that the B12 is getting into my cells.
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