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Old 04-22-2013, 10:41 AM #11
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I've been trying to get assessed for POTS since August! (And yes, Sally is one of the people who made me aware of it in the first place. I dropped her a PM via PR, since I can't use the messaging system here yet.) It is going slowly, there have been snafus along the way, but the appointment with the cardiologist is now less than a month away, and hopefully he will be able to refer me to a really good ME and POTS specialist in another part of the country whom I want to see.

I just had a chat with the people who make my D3 supplement and they reckon that the amount of D3 I'm planning to take sounds like a good amount. The plan is three of the Opti3 capsules a day, which will be 300iu per day, plus two of the 5000iu D3 capsules a week. That averages out to 1729iu per day. If I made it three D3 capsules a week, it would be 2443iu per day. Would that be better?

So is my D3 17ng/ml, then? The range my doctor is using definitely seems to be on the low side, from having had a look around.

What's your preferred reference range for B12?

Incidentally, I've been hearing that you need to take more potassium when you increase your B12 levels, but then I looked up B12 on Wikipedia (which backed up your assertion that sublingual is pointless, there was a handy 2003 study) and it said that potassium can actually interfere with B12 absorption. Any thoughts? I'm taking about 1/2tsp potassium chloride a day in my electrolyte drinks (well, I call them that, it's just low-sodium salt in water).

With regard to increasing the B12, any idea how I work out how fast to increase it? Are there symptoms which would be a sign to slow down, for instance? I tried it in the morning for a few days, felt really tired all day, switched to evening, couldn't get to sleep, so I have no idea when to take it now. I gather that chewing the tablets is a good idea, plus the empty stomach thing. Although on that subject, does it matter if I've recently had a small snack, such as an oatcake or two? Once I'm on a higher dose, is it better to take it all at once, or in divided doses throughout the day?

Angioedema - I'm not getting any swelling, which seems to be an important part of that. My skin looks perfectly normal, it's just itching a great deal. I've only ever had a rash once, which is when I generally got a slew of symptoms one day after lunch, which in hindsight I suspect was mild anaphylaxis. And that was six months ago anyway. Itching, on the other hand, is an everyday occurrence, along with dizziness, feeling freezing cold and so forth.

There has been one change in terms of detergents. I added a fabric softener which supposedly didn't have any artificial fragrances about three weeks ago. I used it twice, realised something was up, rang the company, discovered that they do in fact put in artificial fragrances while indicating the opposite on the label (Trading Standards are now investigating), and promptly rewashed everything. I doubt that would still be affecting me now, and I was moderately itchy before that happened anyway. Apart from that, I'm using exactly the same products I've been using for many years. I have literally been on the same shampoo and conditioner for 19 years now! I have incredibly fussy skin, so I'm always really careful about this sort of thing, make my own moisturiser and so forth.

Pabb - Sorry, I forgot to say that I went back on the gluten in order to get tested for coeliac. I think it was 6 weeks beforehand? So by the time I had the tests, I'd realised that I felt exactly the same as I did off gluten. As for gall bladder issues, they seem to be common in pretty much everyone! Which makes it hard to work out what is actually causing them.

Thanks again for all the help. I really appreciate it.
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Old 04-22-2013, 10:53 AM #12
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Hang on, I've just read a couple of things which say that you should fast before having blood tests for B12 and folate. Is this true? Because the doctors have never bothered about that when taking blood from me.
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Old 04-22-2013, 11:00 AM #13
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The potassium thing usually happens when people are severely anemic. Potassium is robbed by developing red cells..they contain alot of it. But if you are not anemic then you would not be making the red cells so fast, and hence your potassium levels would not stressed that way.

In US 400 is the new low. But in Japan it is higher than that even...at 500-550. So consider your level, marginal.

Fabric softeners are problematic. I'd avoid them completely.
I never use them here. In fact we double rinse all our clothes.
You'd be amazed how much soap is left in after one rinse!
We use Tide Sensitive in fact.

If fragrances bother you, you might want to take some B1, or it improved version Benfotiamine daily. I've read that people with chemical sensitivities who react to aldehydes which are in fragrances, have a metabolic problem metabolizing aldehydes.
This would go for beer and wine and aged whiskeys too.
B1 is the cofactor in aldehyde metabolism.
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Old 04-22-2013, 11:12 AM #14
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Yes, my brief experiment with fabric softeners was very short-lived. The washing machine repair guy had recommended them, that was the only reason I tried them to begin with. Tide Sensitive would probably still be my idea of an irritant, though it's hard to tell as we have different brands in the UK. Let's just say that you can't buy anything I use in a supermarket, it's all speciality health food shop stuff. It was a right nuisance when the washing machine wasn't working a few years ago, as I had to keep sending the clothes out to a laundrette. The first time I forgot to include laundry liquid, so they used what they claimed was a really gentle one and I had the itchies for three days (back when three days of itchy skin was news). The next time I sent in my own laundry liquid, concentrated stuff where you use a capful at a time, and they used half the bottle.

Interesting about the aldehydes. People with ME are renowned for being unable to tolerate alcohol. I never drank to begin with, so I have no idea whether that's true for me.

I'll be taking the Biocare B-Plex B complex once it turns up. (I still can't link to it, not enough posts yet, but it's easy to Google.) Biocare have a good reputation, and it was pretty much the only one I could find in the UK without folic acid. It's basically a B50, plus 200mcg biotin and a smidgen of Vitamin C and magnesium. Previously I've been taking the Country Life Coenzyme B Complex, not that I could really see much difference with that, but it has folic acid and everyone says to avoid that when messing around with this B12 business, so I'm switching.

Incidentally, a friend of mine is having a rough time with anaemia and a lot of stress at the moment. She's not eating well right now either. I recommended Floradix to her for the iron, and she's loving that. Since I have about a month's worth of the Country Life B complex left over, should I just pass that on to her?
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Old 04-22-2013, 01:01 PM #15
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Yes, Sally reminds me:

Vegans can get low in methionine and carnitine and some of the sulfur aminos...like cysteine.

Also they can get low in zinc.

Usually I tell people to stop B12 supplements for 7 days before testing.
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Old 04-22-2013, 01:17 PM #16
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It's looking very likely that I have POTS. My HR doesn't go up the full 30bpm every time I stand up, but then I can't stand dead still anyway. I've not had a TTT yet. I'm too tired to go into it now, but suffice it to say that I've been looking into this for a while, and I have good reason to suspect POTS, mast cell problems and/or EDS.

I stopped eating meat eight years before I got ME, i.e. twenty-four years ago, and never experienced any problems due to it. Going vegan actually improved my health, as I don't get on with dairy. I'll bear the carnitine etc. in mind, although I've taken acetyl L-carnitine in the past without any noticeable effects. There's zinc in my multi-mineral supplement. Which I ran out of a few weeks ago, now you mention it, so that might be one reason why I'm feeling cruddy at the moment.
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Old 04-27-2013, 08:39 AM #17
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I'm finding that I can increase the dose every few days, so I am now up to 2mg B12. I'm on 200mcg Metafolin: does anyone know if I'm likely to have to increase that? Because it's a nuisance cutting the 800mcg tablets into four, and I'm eyeing up the 400mcg tablets.

One curious effect I'm noticing is that I seem to be retaining water. I never retain water. I deliberately lost a quarter of my body weight the other year, and I was the only one on the dieting forum not grumbling about how the scale bobbed up whenever they ate something particularly salty or were premenstrual. (Which was particularly odd since I get premenstrual breast swelling, yet my weight continued to saunter downwards. I concluded that they were inflating with air.) Now, however, I am retaining water in quite a noticeable way. I know that people with POTS start to retain more water when they are put on Florinef, so I'm wondering if I'm getting a similar effect from the B12. Does anyone know more about how this works?

It's hard to tell how I'm doing on the B12, since we're having something of a crisis in my block of flats and it's been quite exhausting. You know you're having a bad day when you reflect, "Well, the good news is that the smell in the basement wasn't a dead body after all." Either I'm still running on adrenaline and due for an almighty crash, or I'm coping with the stress and exertion remarkably well.
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Old 04-27-2013, 09:03 AM #18
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You can take the 400mcg Metafolin every other day or so and avoid the cutting of the tablets that way.

Stay at the 2mg B12 or 1mg a day. Your level was not terribly low, just marginal.

Are you on gabapentin or Lyrica? They cause water retention.
Too many carbs and sugar also retain water.
Some tissue swelling may occur RARELY with high B12 levels, but yours are not really high.
Salt is only one culprit.

Low thyroid functions also lead to fluid retention.
And kidney and heart problems will also.
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Old 04-27-2013, 09:28 AM #19
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They check my thyroid fairly often and it's always fine. I don't eat much sugar, I'm on a nice healthy diet with wholegrains and so forth. Admittedly there's been a bit of a home-made chocolate spread situation since last night, but after the week I've had with this stairwell problem, I think I'm allowed. And lord knows that I've burned it off through all those stairs I had to climb while staying at a friend's. I'm surprised that I can still move, frankly. Normally that level of exertion would have had me flat out for weeks afterwards.

I'm meant to be taking salt, I need it for the POTS. Otherwise my blood pressure drops through the floor and I feel dreadful.

I thought you said earlier that I should take 5mg B12 since I'm vegan?

At the moment I've got the 800mcg tablets for the Metafolin, but cutting them into half and taking them every other day would be easier than what I'm doing now. If I keep on taking a 200mcg dose, I've got a year's supply of the stuff.

I've just worked out that my home-made electrolyte drink supplies about 1.8g sodium and 1.2g potassium a day, at least if I drink 2.5l of it. That's what I generally aim for, but I've been really thirsty and had more like 4l a couple of times since starting the B12.

I'm not on antiepileptics, nope. I had a dreadful time coming off gabapentin a year ago, and have been avoiding them ever since.

Judging from what I've heard about POTS and Florinef, water retention is actually a good thing. People with POTS tend to have low blood volume, so all that necking down of electrolyte drinks is with the aim of bringing the blood volume back up. And when I actually get to that specialist I've been trying to get referred to since August, I will hopefully get my blood volume tested. Until then, it's speculation.

I put on 3lb in the space of two weeks, while on a diet that should have had me losing 1/2lb a week (and I know I can diet successfully, I've done it before with no problems). Plus I stayed with a friend for a day, didn't get much salt or as much water as usual, and the next day my trousers were suddenly very loose on me. Hence noticing that I'm retaining water differently to what's usual for me.
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Old 04-27-2013, 09:41 AM #20
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Your levels were not in that low 150-300 range... so 5mg may not be needed. I only recommend 5mg for about 3 months or so until the next testing...to see if levels are coming up properly.

There are a few people on PN who continue with it at 5mg. But I don't. Once I had my testing on the Puritan's version, I dropped to twice a week, 5mg.

It takes a while for the liver to store up new reserves, and the
spinal fluid takes some when low. Once those two depots are filled, taking more is not really necessary for long periods IMO.
(unless you have some rare trancobalamin issue, suggesting poor transport etc, but testing for this is still very new and not well understood- or some other rare issue that at this time is not explainable.)

The 5mg is to jump start repair, and replenish long used up stores. But once that is accomplished, 1mg a day would be close to the RDA for a vegan. Testing is really necessary to see where you are in the future to decide completely.
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