Hello everyone, I'm new. I have severe ME/CFS plus a bundle of other things. I'm trying to get assessed for suspected POTS (Postural Orthostatic Tachycardia Syndrome), and also suspect a mast cell disorder and/or Ehlers Danlos Syndrome. I'm two or three specialists away from getting the latter two investigated, though, and we're talking NHS waiting lists as I'm in the UK.

I'm having particular problems with itchy skin at the moment, especially at night, and it's going together with sore eyes flaring up. I thought I had dry eyes, but my optometrist said not. Well, he says that both water and oil production are lower than they should be, but there are no dry spots on my eyes, so he thinks it's more of a nerve issue. Anyway, I think I was reading up on possible causes for the itchy skin (I'd been thinking mast cell, but maybe not), and came across the very long thread on B12 here. My brain is cotton wool at the moment, so I'm not sure how much of it went in!

Here is the medication I'm currently on. Yes, I still have painfully itchy skin despite this, but at least it's helping with the stomach pain which has recently flared up:

Antihistamines: 1 cetirizine/zyrtec and 2 promethazine/phenergan
H2 blockers: 2 omeprazole/prilosec and 2 ranitidine/zantac
Buscopan 3x daily for stomach pain

I've been prescribed Adcal D3 for low vitamin D, but since my welfare benefits came through, I've been buying vegan versions of that instead.

I've been vegan for many years now, and while I eat a nice healthy diet, I realise this has probably not done good things for my B12 levels.

I've been taking various multivitamins and other supplements, but am now tidying them up. B12 looks like a good thing for me to be on, and I've been reading up about it both here and on Phoenix Rising. This means an awful lot of details which I am too brain-fogged to understand, and no end of contradictions between the various theories. People seem to agree that I should be off folic acid, so I'm cutting out my usual multivitamin and B complex.

These are the supplements I'm planning on taking. Let me know what you think. Since single vitamins tend to come in higher doses than in multis, I'm not taking all of them every day, in the interests of keeping the doses and cost sensible. I originally put in links, but apparently I can't do those until I've written ten posts. Once I'm at that level, I'll put the links in, but meanwhile it's all easy to google.

* Biocare B-Plex - B-complex without folic acid or B12 - 1 at lunchtime
* NOW Full Spectrum Minerals - 1 at lunchtime
* Bluebonnet Beta Carotene 25,000iu Vitamin A - 1 a week at breakfast (I get plenty in my diet)
* NOW Vitamin K2 100mcg - 1 in the evening, four times a week
* Doctor's Best chelated magnesium 100mg elemental - 2 tablets over evening/bedtime
* Solgar Metafolin 800mcg - 1/4 tablet at lunchtime
* Jarrow Methylcobalamin B12 1mg - 1/4 tablet at bedtime, working up as tolerated
* Veganicity Lecithin 550mg - 2 capsules over breakfast/dinner
* Healthaid Natural Vitamin E 200iu - 1 capsule at lunchtime, twice a week
* Opti3 Omega 3 200mg DHA, 100mg EPA and 100iu Vitamin D3 - 3 capsules over mealtimes
* Vitashine Vegan Vitamin D3 5000iu - 1 capsule at lunctime, twice a week
* Home-made electrolyte drink made with an equal mix of sodium chloride and potassium chloride (aka low-sodium salt), 1/2 tsp per 800ml water bottle - drunk throughout the day, usually abour 2l or so.

I'm not including Vitamin C as I already get plenty in my diet, but might experiment with some once everything else has settled down.

I gather that the Metafolin and lecithin are important to go with the B12, at least according to the late Rich van Konnyenberg. Then there's Freddd, who is into very high doses and insists that adb12 should be included too, although the lowest dose I've found that in that doesn't include folic acid is 10mg. And everyone on Phoenix Rising says that the B12 should be used sublingually, otherwise it won't work, and here you say that you may as well take them orally. Considering that there are several pages of discussion about how using sublinguals can damage your teeth, including suggesting putting the tablets in every orifice bar the ears, I am feeling rather cautious about all of this. Not to mention confused!

I started on the B12 a few days ago, and have been feeling very tired ever since. Also hungry and thirsty - I drank 4l yesterday, which is definitely more than usual for me. I understand that some level of startup symptoms is normal.

With regard to testing, I've not had much done, and I've never been told the actual figures. Apparently my Vitamin D levels were low despite being on D2 for years, so I was put on the prescription D3 (400iu) and after that they came back as normal according to the NHS. I had a quick Google, and one NHS trust defined adequate as >50 nmol/L, while another defines replete as 70-150 nmol/L, and a third goes for 81-220 nmol/L. So I have no idea what my actual D levels were. I've heard that a lot of countries have reference ranges that are much too low.

I think they tested my B12 and that was also normal according to NHS guidelines. I'm having trouble finding those, but one website suggests 138 - 780 pmol/L.

I distinctly remember my GP commenting that the one thing that stuck out was that my folate was really high. She had no idea why, and at the time I googled to no avail. From reading the big B12 thread here, I learned that high folate can be a sign of low B12. That does make sense to me.

So:

1. How does my proposed supplement regime sound?
2. Am I going about the B12 business the right way? Metafolin and lecithin and such.
3. Sublingual or oral for the B12? If I take it orally, does that mean I need to take more?
4. How much D3 should I be taking? I've heard that taking too much can also be problematic, something about steroids I think.
5. I'm on the Jarrow B12, which everyone is moaning about elsewhere as apparently they changed it somehow, but I bought it over a year ago so it should be OK. Once it runs out, which brand should I get?

Thanks in advance.

P.S. I've got visual problems, so please don't use smileys or coloured fonts.

Welcome to NeuroTalk:

Please get your actual numbers for the B12.... that range you posted is the old one that goes down too low.

Get me the concentration designation as well... pg/ml or nmol/L? Or whatever it is.

Being vegan is a risk factor for low B12. High folate serum readings usually come with low B12.

The sublingual will work orally...just chew it up and swallow with water. Oral will work but you have to take it on empty stomach with no food for an hour after. First thing in the morning is best.
1/4 tablet of 1000mcg will provide about 3mcg only. The rest is not absorbed.

All those acid blockers are also going to prevent B12 from food from being absorbed, but you don't eat animal sourced foods anyway? Acid is required to break B12 out of protein so intrinsic factor can attach to it. So the issue is not as great for you. I really think you are going to need 5mg methylB12 daily... at least for a while.

Your D3 dose would be based on what level you have at testing.

We have a person, Sally, on our PN forum here who had CFS...so post there, and ask her what she thinks.

http://neurotalk.psychcentral.com/forum20.html

Hi, and thanks for the speedy response!

I'm slightly nervous that I'll get grilled if I ask for my results, but I suppose it's not a big deal to ring up reception and ask them to dig them out. Normally they just pass on the message "it's normal" and tell me that's all the doctor said to them. The tests were run a year or so ago.

I do know about taking B12 on an empty stomach, yep. At the moment I'm going for evenings as they are making me tired, although last night I tried that and then couldn't get to sleep for a while. I'll see how it works out.

Am I right in thinking that you end up absorbing less if you take it orally than you do sublingually, so it's likely to end up being a higher dose? Or is the whole sublingual thing a red herring? They do get rather intense about some things on PR, I've noticed.

I've not been on the H2 blockers for long. I do wish they'd run some investigations into why I'm getting all this stomach pain and itchiness, instead of just bunging me on more and more meds, but that's what tends to happen when you have ME.

Any idea how fast I should increase the dosage of the B12? And is there any type of reaction which is a sign that I should back off, rather than waiting it out?

Sally is a very nice person, and she is very helpful and nice to everyone at PN here.

Have you been to hummingbird's blog? Her father posts here and often links to that.
http://www.hfme.org/apps/blog/

The sublingual thing is a historical dosage form, because it was thought that B12 could not work orally. (in reality it has to be in very high doses to work orally). But the B12 molecule is huge, and the area in the mouth, small, and only smaller molecules with lipid affinities get thru easily. It is now thought that the B12 dissolves in the saliva and you swallow that. So yes, it is probably a red herring for sublingual use. Places still make it that way mostly out of habit, because people expect it. But studies show oral will work equally compared to injections and sublingual.

I used 5mg of Puritan's Pride methylB12 for about 3 -4 months, once a day and then got tested. (I wanted to see if this new item at Puritan's was of good quality). My result was 1999...which was the highest that hospital could test at --due to calibration limits on the machines. My normal level is around 800 without supplements. So you can see oral does work!

If any food or fiber is present in the intestine where B12 is absorbed, it will act like a sponge and keep the B12 from getting to villi where absorption takes place.

Chronic itching can come from gall bladder/liver disease, lymphoma, gluten intolerance and drug reactions. Are you using any ACE inhibitors for blood pressure? They can cause skin symptoms too.

If that's Sallyblooms, I already know her a bit. Thanks for the recommendation, I'll drop her a line.

I did look at Puritan's Pride, but international shipping is a bit tricky. If I spend more than £15 then I'm liable to be hit with a £11 customs charge, and the really good deal at PP is the five bottles of 5mg for $25, which is over the £15 limit. Swanson, Solgar, Source Naturals, Bluebonnet and Jarrow are brands I can get fairly affordably over here, at least judging from Amazon; there may be a few more lurking somewhere.

My gall bladder was removed a year ago. It sounds like I should be asking for some tests to be run, at least if the itching hasn't cleared up in another week (the doctor told me to give the new antihistamines a couple of weeks). Any idea what I should ask for? I did see a dermatologist in August, but she was a bit clueless, told me erroneously that dermographism (which I do have) doesn't cause itching, wasn't interested in looking into mast cell stuff, and concluded after seeing me that I was getting itching from codeine, not knowing that I very rarely take it and haven't taken it in months. I'm not on any blood pressure meds, though I'm due to see a cardiologist in a month. My BP is normal on average, but leaps about all over the place, including going down as low as 75/40 that I know of. The post at the top lists all the meds I'm on, though I do occasionally take tramadol, paracetamol and/or diazepam for pain relief. As for gluten intolerance, I tried going gluten-free for a year a while ago, and it didn't seem to make any difference. So eventually my GP ran a blood test, said I was fine, I went back on the gluten, and apart from a slight adjustment period both times, there was no difference.

The itching follows certain patterns: worse at night, worse on my legs in the evening, occurs together with dizziness, sweating, nausea blacking out etc. if I stand up and keep still. Hence trying to look into mast cell problems.

Another thing connected to dermographism is angioedema.

Here are some links:
http://www.haea.org/

http://www.hcplive.com/publications/...-04/2005-04_02

HAE will also cause abdominal pain.
This is what I have been diagnosed recently with...and I have to
go to an immunologist soon (after my drug induced lupus and AE
simmer down from lisinopril), for further testing.

You can search for more yourself, as you read these two very good sites.

Angioedema often does not get diagnosed until a crisis, which is what I had, recently.

The HAE site gives the blood work needed, so your can pass that along to your doctors.

I didn't have itching so much as burning stinging. Also swelling of the affected areas.

So please do look at these two links.

Yikes. I don't get upper airway problems, thankfully. When I have breathing difficulties, e.g. after standing up, it's the lower airways.

I'm also noticing more problems with the parts of my body which are resting against the mattress developing a mild burning sensation. Feet and buttocks, mainly. I've had this occasionally for years, I'm just noticing that it's happening more at the moment.

Apart from getting hold of those old nutrient test results, any idea what I should be asking the doctor to check? As I said, the dermatology trip in August wasnm't particularly productive. I was pretty ill at the time, I collapsed in the hospital (and a few times over the next few weeks), then a week later my then-partner left me, so that kept me too busy to follow up the dermatology thing. I remember the dermatologist saying vaguely that lots of things can cause itching, running some blood tests, and then writing to me to conclude that it must be caused by the codeine (which I wasn't actually taking!). The itching is burning/stinging when it's bad.

I'm looking up causes of itchy skin at night and there's some scary stuff in there. I doubt it's menopause, I'm 35 and my mother didn't go through menopause till her 50s. I don't t think I have dry skin or anything biting me. I wonder when my thyroid was last checked - I've been really cold (multiple layers of clothing, lots of quilts on the bed, often the electric heated blanket too) for a while now, pretty much the last year. My cousin had non-Hodgkins lymphoma when she was 19, though she's fine now. Other info - I'm white British, Ashkenazi Jewish family. I'm already very careful with toiletries and the like and use very simple, unfragranced ones, wear cotton and so forth. The skin looks normal.

If you were tested for celiac after being gluten free for a year the tests were worthless! Gall bladder issues are common in celiac, and there is a common skin rash which is itchy that is asso. with celiac.
http://www.ou.org/shabbat_shalom/art...wish_community
There is also a higher risk in celiacs for lymphoma.

Results!

Vitamin D, I think from a couple of years ago (after I was put on prescription Vit D): 43 nmol/L (reference range 25-170 nmol/L)
B12 in 2008: 520 ng/L
Folate in 2008: >24 mcg/L (i.e. their testing only went up to 24mcg/L)

What do you make of that, apart from the B12 being quite a long time ago? From having a quick look, I can't for the life of me see how they think that the Vit D is normal, but perhaps that's actually from before I was put on the prescription stuff?

They're going to try to organise a home visit tomorrow to look into the itching. They did offer yet another antihistamine, but I feel that I've been on so many antihistamines by now that if they were going to clear it up, they would have. Should I ask for any blood tests, either with respect to the B12 or the itching? Or would being on B12 supplements now cause problems with the blood tests? I'm only on 250mcg at the moment, since I've just started and I'm raising it slowly.

The D is low. US range is 30-100ng/ml.
your lab does nmol/L so conversion is to divide by 2.5...
from this conversion chart:
http://www.unc.edu/~rowlett/units/sc...ical_data.html

The new recommended normal is 50ng/ml so you should need at least 2,000 IU D3 daily.

Your B12 is just barely over the 400pg/ml level. If yours had been reported at pmol/L we'd have to do the math conversion on that, but yours is just a variant on pg/ml.

The blood tests for angioedema are in the links I gave you.
They are for the c-inhibitor levels, and various complement values. (blood work).

Dizziness, low blood pressure on stand up suddenly is an orthostatic problem. It can be from a autonomic neuropathy called dysautonomia...sometimes called POTS.
http://en.wikipedia.org/wiki/Dysautonomia


Sally on PN had/has this also. Autonomic neuropathy can affect the stomach...cause delayed emptying and digestion. This leads to nausea and pressure pain as the food cannot move along properly. The medical term for this is gastroparesis.

http://en.wikipedia.org/wiki/Gastroparesis