Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ameilie73, Jun 26, 2013.
I weigh approx 7 stone (100lbs) how much of each vitamun should i take daily?
Hi Ameilie - I can't tell you exactly how much to take, but here is a link to a B12 protocol by Freddd of the Phoenix Rising board which gives his recommendations. Because you are a lightweight (no offense! , you might be able to cut the doses a little. I have read though that excess B vitamins are excreted - it's not like vitamins A or D which can cause toxicity if doses are too high.
Here's the link: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/ He recommends 5,000 mcg. sublingual methylcobalamin and 800 mcg. folate (metafolin), which is what I take (I weigh more than you of course)
He talks about potassium being important and I speak from experience when I say he is very right. I had been taking B12 for many years, large doses, with no noticeable effect. But when I added in folate in the form of metafolin (by Solgar), my energy picked up markedly within a couple of days. And then a couple of days after that I felt like I'd been hit by a truck, and it turned out my potassium had tanked. The B12 and folate together had caused an increased need for potassium as cells healed and started functioning properly. If I had not known to be on the lookout for low potassium symptoms, I would have stopped the protocol. As it was, I titrated up to 1000 mg. of potassium a day and the extreme fatigue and lethargy disappeared and I gradually reduced the dose and now take 400 mg. a day as maintenance.
An interesting side note is that I had had that horrible lethargy before and never knew what it was, just thought it was another d**m CFS symptom, but instead it was from low potassium. And I read that the very sedentary lifestyle associated with CFS can cause low potassium - our bodies need to move to get potassium in and out of cells. And my body just does not move very much - otherwise I crash.
Re magnesium: I've read that 400 mg. is a good amount, some people say more. If you take too much, it will cause loose stools but won't hurt you. I take 600 mg. a day with no problem. My doctor told me to take it up to bowel tolerance, so just experiment. I've read the most bioavailable forms are magnesium glycinate or magnesium citrate.
Just a note regarding absorption, especially B12. If you've been taking PPI drugs (GERD drugs, prevacid, aciphex, etc) for an extended period of time, you may have lost your "intrinsic factor" in your stomach, preventing any absorption of B12. This happened to me and my B12 level became so low it actually caused brain damage. My neurologist said if I wouldn't have questioned my memory and been tested, I would have had irreversible damage. Now I have to take B12 shots for the rest of my life.
Thank you for your replies. With regards to the intrinsic factor, how long was you on ppi's at what dose and did it affect any other vitamin absorbtion my vit D is insufficient to, and my dr prescribed a high dose for a 6 week period but as you have noted i have expressed my concern as to whether my body can absorb it now.As i under vit D can be toxic if not absorbed. I gather you came off ppis how did you get on?
I've been on ppi for at least 15 years and still am. Going off doesn't reverse the affects and there's other damage that could happen if I quit using so I still take. I'm sure it's different for different people in terms of the length of use in which it can cause this issue. Most people have low Vit D. I take 2000iu's a day and this doesn't seem to be related to PPIs. All the rest of my levels are fine, just B12.
Regarding your vitamin D.
Why do you think that your body cannot absorb (I assume you mean "utilize") your supplemental vitamin D ?
Basically the only people who have a problem utilizing their vitamin D are obese because the vitamin D is stored in the fatty tissues and released very slowly. This only means that the obese must take a higher dose than the thin people. A dose of 5000IU daily (when little sun exposure) is a safe and beneficial dose.
Toxic levels of vitamin D are very rare even at doses of 250micrograms (10,000IU) daily. This is known as the "No known adverse events" dose.
To ensure proper utilization of vitamin D one should take vitamin K2 and magnesium.
Its ok, its calcium that can be affected. Vitamin D is ok with ppi I have asked my dr if having ulcers in my colon can affect absorbtion. Im still shocked that im deficient in it, i already take supplements and eat alot of oily fish, salmon and mackerel especially. Although i do live in england not exactly the sunniest climate.
What does K2 do then Ian?
K2 (normally 100 micrograms of mixed K2) ensures that vitamin D is utilized effectively and maintains calcium balance particularly in the bones.
Mackerel is a good food source of vitamin D supplying around 3 to 5 micrograms per 100gm serving, however it also supplies around 13 to 15 micrograms of vitamin A, which is OK but the vitamin A reduces the availability of vitamin D in the fish. Over all, you can basically count out foods as a source of vitamin D3 considering that if you live in the midlands or north of England/Scotland then you would need a supplement of between 5000IU and 10,000IU daily in the winter. I don't care what the NHS says, they are wrong.
I have ME/FM and have taken 5000IU vitamin D3 for 18months now and my blood level is 60ng/ml (150nmol/L).
My brother who is not ill takes the same (but lives at a higher latitude, further south in NZ and gets less sun) and his level is 85ng/ml. My lower level is because I have ME. what is often not taken into account in these tests, levels and recommendation is the illness, which affects the levels. I estimate that ME is like obesity in the calculations, ie you need around 30% more than normal . I think this is due to the fact the measurement of serum vitamin D is 25(OH)vitaminD ie the form which has been converted by the liver and I think this conversion (hydroxylation) is mildly dysfunctional in some of the immune system diseases as well as cancer (which is an immune system disease).
Re PPIs. Their most damaging side effect is on serum levels of magnesium which can be driven down by 60%.
Everyone on PPIs should be on a minimum of 400mg magnesium glycinate or citrate. Preferably the citrate because it is also an alkalinizer. I would recommend taking more magnesium not more calcium.
Im 38 yrs old. 7 stone approx and been prescribed 20,000 Colecalciferol 3 times a week. 60,000 a week sounds alot. My 80 year old housebound neighbour isnt even on that amount. It doesnt even recommend that dosage in the leaflet enclosed. My blood results a couple of months ago said 33nmol/L?
I wont grow an extra pair of arms will i? (although sometimes i feel i could do with them). Just sounds alot in comparison to leaflet recommendations and daily recommended allowances for my age.
60,000IU weekly is a priming dose but not unusual for a priming dose, which is often 10,000IU daily ie 70,000IU weekly. This is done to lift your levels quickly to a good level of above 50ng/ml (125nmol/L). Your level of 2 months ago was extremely low. By now it should be up to 125nmol/L. and I suppose you will be retested very soon. Once your levels reach above 50ng/ml (125nmol/L) you could lower your dose to 5000IU daily. You could actually continue on the dose of 20,000IU indefinitely without problems. I know many people who have taken 10,000IU daily for over two years and continue to do so.
A lot of none sense is talked about hyper-vitaminosis D without any research to back it up. In fact nearly all research says that at these sort of doses it is safe and indeed "natural" for those in sunny climates who get good daily sunshine exposure. There has never been a case of someone getting too much vitamin D from sun.
Thank you Ian for your reply. you clarified things which makes me feel better about it.
Only started the high dose vit D yesterday. My Rheumys secretary had to write to dr, dr had to write prescription then i had to wait for it to be ordered, nothing is ever simple or that straight forward. I think in England at least any one person is either waiting or queueing for something. The weather is pretty dull, we've had a couple of pleasant days then grey skys and rain. Im on the high dose for 2 months, then like you said their probably retest my bloods.
Seeing dr on Friday about B12 and something that looks like G T protein electrophetesis, doctors writting looks like a spider has scrawled across the page, I'm sure so a simple layperson cannot understand, however I am the sort of person who likes to know, its the not knowing or understanding that provokes concern, although i do know that not every patient feels that way. My Rheumy would wait 9 months until my next appointment with him but I want my dr to test for B12 and whatever the other thing is now. As my bloods are already affected
Thank you or your time, much appreciated.
Your doctor is testing you for a variety of diseases with the electrophoresis.
such as NH lymphoma, myelomas, leukemias, some autoimmune diseases which are all associated with fatigue.
Ok, thanks for letting me know that Ian
I've had bad reaction to high vitamin D dose. Took first dose monday evening had a headache and felt bit nauseous, vivid dreams racing heart, knees painful in morning, but didnt correlate it. Felt sleepy throughout Tuesday and headache got worse. Wednesday felt ok just bit tired.
Took second dose Wednesday evening, went to bed about 2am. Woke heart racing, head banging, a young girl stood next to my bed, disappeared, knew hallucinating. Went to toilet quite a bit, not with it at all. Woke Thursday late morning, head thumping stiff neck, felt like kicked in the back, vomiting. Slept all day all night and woke up at 12ish today, still sleepy, pressure headache, chest pain and feel sick. Went doctors and told him. He said maybe dosage to high, he'd lower it and spread it throughout the day. I said no, (i dont trust him anymore id already questioned the dosage on Monday and he said it would be ok). I knew my instinct was right, He was given me 3 times the amount of my 80 year old housebound neighbour. This may be a dosage for Vit D insufficiency but surely they must take in to consideration that there is no average dosage, this dose might be ok for a six foot15 stone man, but not a seven stone woman. Ive lost all trust in him, in future i'll trust my own instinct.
He said it would work out of my system, i hope his "right" about this because I feel awful. I'll wait to see what my Rheumatologist has to say. Im going back to bed. Feel like Ive got sunstroke and havent even been in the sun.
Did the doctor not test your blood levels???
This all sounds very strange indeed. The symptoms you are reporting are not from high dose vitamin D. Your dose was not that high. Stoss doses of 600,000IU are often used. Your stoss dose was only 20,000 three times weekly. ie (60,000IU weekly).
Your doctor is also talking nonesense when he says "spread it throughout the day." This will make no difference to the delivery of vitamin D in your body. Cholecalciferol slowly builds up in your system.
If the symptoms are the result of taking a capsule of vitamin D then there is something wrong with the preparation. Often the carrier oil is soya oil. Are you allergic to soy oil? Other preparations use rice milk powder. I would check out the formulation.
My blood levels are 33nmol/L. Vitamin D insufficient. I don't know Ian? No soya in capsules, not allergic to soya anyhow. There called Colecalciferol 20,000 units three times a week. My Rheumy requested i be put on Desunin 800 iu at a high dose. When I queried my dr as to why he hadn't prescribed what Rheumy had requested he said Id be fine that what he was giving me was standard for my condition. Anyhow, i havent felt well since, still very sleepy, headache, nausea and just dnt feel right. So Ive reported whats happened to me to Rheumy and waiting to see what he says, no longer trust dr, he is new.
Wouldnt mind we've actually got some hot sunshine in Britain that I should get out in but been in bed since Wednesday night, not like me at all.
Still ive asked for my parathyroid, kidneys, liver B12 to be tested. And he is sending me for a scan on the left side of my colon which ive suffered with for a long time. Still going to be trusting my own instincts in future.
There are no side effects on enclosed leaflet Ian just a website for additional info. Contents are Vit D3, (Choecalciferol, Acacia gum, sucrose, starch, medium chain triglycerides, antioxidant :vit E). bulking agent: microcrystaline cellulose, anti-caking agent: Magnesium stearate.
capsule shell= (pearl white part) Hydroxypropyl methylcellulose, potassium aluminium sillcate. outer shell White part = hydroxypropyl methylcellulose, titaniumdiocide. Need a magnifying glass to read this.
Separate names with a comma.