What Should I Do Now?

Hi Rose. I suspect your ferritin (iron stores) will be low which is causing a low rbc and low mchc and mcv. Please ask for folate, ferritin and b12 tests xx

Thanks caitlin and Heather.  Am ringing for a GP appointment today. Things seem to be piling up on me. Would low ferritin and/orB12 have anything to do with fluid retention? Probably clutching at straws here. Just don't want to think about the alternatives.

caitlin

Thanks for your response.  I've been to the emergency clinic this morning, but only because of the fluid retention and am having tests done for electrolytes and albumin levels.  I have low stomach acid so it's a bit of a worry as to what the problem is.  I will get the results tomorrow.  The doctor suggested exactly what you said: Weigh myself at the same time etc each day and record what i drink and what I pass out.  In the meantime I'm going to stick with my own regime of B12 and folic acid supplementation and look further into what step to take next in the New Year.  Just can't cope with anything more at present.

Hi again 😉

Maybe worth asking for thyroid function tests too. Hypothyroidism can cause fluid retention. Also ask for homocysteine test as low folate and b12 can cause high homocysteine. High homocysteine affects cholesterol and plaque build up in arteries xx

I looked at the absorption after omeprazole and stomach tuck which is similar. . Both resulted in B12 and iron deficiency. The iron in about half the cases reponded to

specific supplementation but not to general  supplements.

The folate levels won't tell you much ie if it is bioavailable. The gene test can be available through your gp free.

From memory 30% have impaired utilisation and 10-20% can't handle folic acid. To my mind the odds favour trying it to see.

There is disquiet in some medical quarters about testing B12 with the idea being go with the symptoms. eg ABC news April 2013. However you may not persuade the GP.

I would look at maybe changing the form of B12 because you responded but less and less well. Maybe  you don't convert it too well, so methylcobalamin might work better.

I bring my own in from the US usually in 4-5 days at about a third the cost it is in NZ.

Alternatively if you are in Auckland I could drop off a bit to try.

Thanks for the info Chris. No, I'm not in Auckland but use both sublingual and transdermal methylcobalamin.

Chris?  Can you get tested for the MTHFR gene through a GP in NZ?

I would think so. The hospitals run genetic units, although it isn't listed as an example it is basic. Alternatively the lab service can arrange it via gp.

One possibly overlooked part is that some of the ME recovery people who use mega doses for various reasons claim to have subjectively tested various brands and found some ineffective.In theory that should not be so. In practice there have been less scrupulous drug manufacturers of generics. I only tried one patch brand and didn't feel it did much. (That technology apparently is difficult and the results not standardised)

The delivered dose of the oils is not made explicit but some find them effective.

I am still experimenting with the sublinguals but find that a 8 mg dose lasts more than a week.

Just looking at your taking only MB12. If you were absorbing B12 naturally that would include various forms.. The injected hydroxycobalamin is also converted in an "as needed" or rate limited way to around 50% MB12 and 50% AdB12. These have different functions mostly through getting and giving up methyl groups, in the case of ADB12 for the mitochondria in particular. These reactions are rate limited depending on cofactors like MTF and the B vitamins. Excess MB12 is not stored but excreted supposedly within 3 hours but I think it may be at least for me around 12.

There are two major points. One when you take a bulk lot daily or monthly your body is in a catchup mode that is it needs to process more than usual. However that depends on the cofactors not being a limit because it places a greater demand for them.

Secondly MB12 needs to be balanced with the same amount of ADB12 and cofactors as I mentioned to sleepy.....

For me the ADB12 SAME line effects sleepiness. I need less day and stay up later at night. It looks like I can make SAME from ADB12 so that saves that.

I have been looking at the research and practice on this and doing my own try outs.

If you want some MTF and ADB12 to see you through and trial pm me with your address and I will post or courier some. You may or may not still get it before christmas at this stage.. But at least since it works in a few hours it might save you a not very good christmas.

That probably requires more knowlege than most of us have.

A few general points though.

I think B12 is better in the morning in that and ADB12 resulting is stimulatory. However since you presumably don't notice a difference between days variation is not a factor.

I found that a general strong B complex helped nocturnal insomnia taken at night. Taking a single B is not a good idea as they work together.

If I understand it correctly you have daytime fatigue but not sleepiness. That might be related to the insomnia. Otherwise you have the low iron store. Presumably this goes with low haemoglobin. It would seem like a good idea to treat this, but your gp can look at the whole iron blood pattern.

The low thyroid. Presumably the gp could look at that. Otherwise mild forms often improve with general treatment like b12 as the body restores itself. That too could be a source of fatigue as can many things. If the thyroid is a bit low from a practical point of view, being cold at night can be  a factor and cause poor sleep. Try being warm.

It may not be a circadian issue per se. You might find tyrosine a help. To reach the brain it has to be not competing with other proteins to cross the blood brain barrier ie well after any other food. I am sure there are remedies. If you lacked melatonin presumably you wouldn't tan at all if you were in the sun and you likely would prematurely grey though maybe everyone thinks the grey is premature.

I can't say what oil you need, one because the contents are not specified two the absorption rate is said to be high and three the actual balance of what you need is not known, although it doesn't seem mega.

What you are and nearly all gps will assume is that all the various metabolic pathways work. 90% of the time that is right. There are two tests for I think they are homocysteine and MMA that indicate two pathways. However in this country anyway they are expensive and limited to specialists.

It is hard to say if you need to trial more things or types of B12 because you seem to have a broadly working B12 protocol  maybe plus other issues.

However central to B12 utilisation is methylisation. Those methyl groups come from somewhere like Methyl tetra folic acid which you may or may not need. etc. One and the body's preferred source according to some research comes from lecithin. I add about a dessert spoon of the granules to some cereal for breakfast and found years ago it very much eased severe fatiguability.

Treating yourself is a bit hit and miss, particularly as the gp will have knowledge you don't. If you have to though it is a bit trial and error even with some knowledge.

I must point out that I am not qualified to give you advice and even if I were I would not do so without your tests results full review etc.

If it were me I would start with the simplest things first like  a high strength general B probably with some C and iron.

I also would try to work with the GP while maintaining some independence. Like surely he can deal with the iron anaemia and thyroid.