I started this whole thing w/ a B12 deficiency. Was getting tingles, numbness, loss of balance, carpal tunnel like sensations and no clue what was going. Serum level was at 596 but apparently this isn't an accurate measure of B12(Homocystein/MMA is a better test). Took it anyway and those symptoms started to fade, have been on it ever since.
My blood tested low for Vit D so I'll be picking that up, but I've been getting an influx of these new sensations and pains like every few days. I can't tell if its a disease working itself or a vitamin deficiency. I have strong feeling it could be the latter from the way its progressing, happened with the B12, could happen with anything else. I've picked up CoQ10, Omega 3. I hear Copper, Magnesium, Zinc, Selenium? deficiency can cause some weird stuff.
Well yes, certain vitamins and supplements can certainly abate symptoms. A little list:
- 2000 mg vit C (staves off infections/flu like feeling),
- 2000 mg evening primrose oil (improves saliva flow),
- 100 mg calcium (against toothaches),
- 750 mg magnesium (keep bowels going),
- 14 mg zinc lozenge (against mouth sores),
- 5 mg dhea (improves eye moisture and saliva flow - thanks to this I'm able to wear eye contact lenses again!)
Probably forgot some other ingredients of my daily cocktail ;)
Hope you find what you need.
yes- my eye twitches and muscle spasms disappeared when I addressed a magnesium deficiency ( also has helped with insomnia)
My ferritin is very low and as I have brought it up slowly my headaches have abated somewhat, thumping in my ears disappeared and heart has stopped pounding.
Who knew?
I get very depressed and ache more when my Vitamin D is low. I also found my mouth was drier and I was more anxious and wobbly when my potassium went low.
Paul, I've gotten some great relief from Vitamins and supplements. Still not anywhere near normal but my energy, moods, aches and pains are better. I was very low in Vit D. At one time low in B12. I also take Maxi Tears which is an Omega -3 vitamin that I get from Amazon. My eye doc told me about it. I never would have thought I'd be a believer in vitamins and supplements but through trial and error, I am a believer. Main stream medicine isn't real big on them and I've worked in main stream medicine too long and western trained. I like the new Functional Medicine approach that is taking hold. They are big on nutrition and making great strides with healing people.
I find this very interesting because I tested low for B6. It was surprising since I eat ample meat, fish, chicken, etc.. as well as fruits and vegetables. This deficiency never showed up before.
Anyway, despite dire warnings from members of this forum, I started taking B6, B12 and folic acid once a day. I started this new regimen on November 17 and my energy level has improved greatly. I still have moderate dry eye and throat, but am able to get through the day without brain fog or wanting to crawl back into bed. I'm on the lookout for signs of excess, but so far have had no adverse effects.
BTW, I discontinued taking the "collagen cocktail" after being on it for about seven months. It didn't cause me to feel any worse, but I don't think it was doing anything to abate my symptoms.
But I have noticed a distinct difference in my energy level since taking B supplements. I was supposed to be taking folic acid anyway, but became lazy and fed up with taking so many pills each day.
The other notable blood test result showed a high level of Vitamin E. Quite frankly, I haven't taken E in years. Does anyone know why this would show up?
Weird....
My response is similar to Deb27.
I've gotten some nice help with certain symptoms with my vitamins and supplements.
I had mild depression and bad (low) energy symptoms, but these two things improved A LOT with vitamin d3, B complex, a little extra B6 and B12. I also sometimes take Fish Oil.
I still have issues with fatigue off and on, which I think are largely related to having auto immune issues. I certainly can get fatigued for days after traveling, for example. I still have issues with this, but now I need to have a catalyst causing the problem...it is not daily and always. The vitamins really helped.
Additionally, I have found that drinking LOTS of water daily helpful for fighting fatigue and dry mouth.
I suspect taking co-q10 regularly also helps with dry mouth.
In fact, esp when I do the above two things regularly (drink lots of water and take the co q10) my dentist will remark that my mouth seems well hydrated...as if I don't have Sj. Syndrome at all. (Tests absolutely confirm positively that I have Sj.Syndrome)
Additionally, I personally have had profound good luck with taking Oil of oregano tablets and vitamin C for cold/sinus infection prevention. I was getting them VERY often and now..knock on wood....hardly at all. I consider it basically a bit of a miracle.
When dieting, I try to pay attention to my potassium intake...use mostly foods for this. There is a vitamin water that has a lot of potassium in it that I will drink here and there when dieting. Also V8 juice has a lot of potassium, etc.
I wouldn't be without the vitamins I have mentioned in this post. They have helped me a LOT.
I have had a lot of colon issues the past couple of years and, of course, always assume that they are from thr autoimmune. I finally told my internist that I needed stool specimens or something due to all my issues. She checked me for Celiac also. I had some tingling toes also plus lots of gas, etc. many stools.
She tested for B12 and it was ok but she put me on 1000 mgm a day anyway. Turns out that Metformin that I take for diabetes causes lower B12. I am having less problems now but still a problem. Have had to increase my metformin so it may be that I will have to increase the B12 also.
I used to take Vit E for many years but quit taking that when I was hearing that it could cause some issues which I have long since forgotten. I have had low Vit D and have been on that for quite a few years and am now up to therapeutic level. Takes time to increase the D but we must be under care of doctor as this vitamin is not excreted from our body and too much can be a problem. We need to have doc draw blood periodically. Irish
Nexium and other PPI's also decrease the amount of B12 that can be absorbed by the body.
Those taking B6 .. be very very careful.
I always need added magnesium myself. Now trying to find a safe product with minerals.
Just want to say again that we need to talk with docs before we take supplements. Even vitamins can cause us problems and are not as safe as we think and we can put ourselves in danger. Many drugs can increase the amount of absorption of other drugs which in itself can be hazardous to our health. Many can be toxic to our liver.
Everything we eat and drink goes through our liver and we only get one liver per life time so we need to guard it well. Good luck all. Irish
I have very low vitamin d and the rheumatologist prescribed 800 units daily in March this year. Unfortunately, so far, I haven't perceived any benefit. I was measured again in November but there was no advice to cease, so presume it's still low
Jaygeee .....
800 IU is a very low dose. That is why you have seen no benefit from taking 800 IU Vit D per day.
If you have Vit D deficiency, you need a much higher dose than 800 IU to increase your Vitamin D level..
My Vit D level was 28 when I first saw my Rheumatologist. I was already taking 3,000 IU Vit D per day. She put me on an additional 50,000 IU Vit D2 per week (prescription). So, I was taking 71,000 IU total per week, or 10,000 per day. After a month, my level went up to 34. She kept me on the additional 50,000 IU per week for a total of 9 months, until my Vit D level was well over 40. Then I did trial and error to find a dose that, kept me at least over 40 and preferably over 50. I now take 9,000 IU of Vit D 3 per day (OTC) to maintain a level of around 50.
My Rheumatologist wants my level to be over 40 because people with Sjogren's who have level of Vit D lower than 40 have a higher incidence of Lymphoma.
In addition, Vit D helps with fatigue and pain.
If I were you I would talk with the Rheumatologist about a much higher dose. If he/she won't prescribe a higher dose, I would find a doctor who will. You need to monitor the level while on high doses. I had my level monitored every 3 months and, now that I have found the right maintenance dose, I have it monitored once a year.
Interesting - didn't know it was a low dose. My initial measurement was 22 !!!
Jaygeee ..... I just edited my above post because I forgot to mention that the 50,000 IU prescription Vit D2 was in addition to the 3,000 IU Vit D3 that I was already taking. So, I was already taking 3,000 IU per day when I saw my Rheumy and, even with the 3,000 IU per day, my Vit D level was still only 28.
So, with the 50,000 IU per week and the 3,000 IU per day, I was actually taking 10,000 IU per day. Now I take 9,000 IU Vit D3 per day to maintain.
Foe some reason, many of us with Sjogren's have an absoption problem and a large number of us are Vit D deficient.
One important factor to remember about Vitamin D in it's two forms (D2 and D3) is that they aren't interchangeable or endpoint equivalent. Various studies have compared the two forms and in most (but not all) studies, the findings were that it takes 2.5 times the amount of D2 to achieve an equal rise in serum D levels measured against D3.
Unfortunately it's not a simple comparison. For one thing, most scientific studies dose meds in moles or millimoles, not the IU measurement available to us as consumers, so it's difficult to understand whether a 5 millimole dose of each form is 100 IU or 1000 IU or more. Additionally, the results tend to show that D3 increases the available serum levels, while D2 increases the total serum levels, so the level is up, but may or may not be utilized by the body.
In some studies, D3 in doses up to 25,000 IU short term have been deemed safe, while the 50,000 IU dose of D3 can be safer for much longer.
My levels have always been normal (possibly due to sarcoidosis, which frequently causes a dysregulation of vitamin D production with an increase in extrarenal [outside the kidney] production.[25] Specifically, macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D) but I have always supplemented with my GPs approval. His recommendation is 1000 IU daily, doubled during the winter months, based on the latitude we live in, far enough north that sun supplementation is limited. Naturally, levels are checked at least twice a year.
SJS Rheum tested and lab results showed deficient Vit B and D.
So therapeutic doses of both with labs to monitor.
I did experience with addition and rise in levels lessening of bone and muscle aches/weakness and tingling. (Vit B12 is important for brain and nervous system) Vit B sublingual is recommended (how one Dr. takes it herself)
Vit D3 is the form I was prescribed.
Mega doses of Vit d can be toxic, therefore the labs when given therapeutic doses and then the leveling maintenance doses.
http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108
Vit A,D and E are fat soluble, so build up. Unlike C and B which are water soluble and flush .. well you know where if you take too much.
*Both fish oil and Vit E are/can act as blood thinners .. so something to be aware of.
Supplements and herbs need to be screened through Dr. (I do pharmacist too)
http://umm.edu/health/medical/drug-interaction-tool
Can't recall if it was a Wallace Sjogrens Book, where I read about mal-absorption of nutrients due to gastro enzymes in patients being off. So even with a careful diet, we can be off in certain areas and present possibly with gastro symptoms.. bloating, diarrhea,gas, etc. So our colonoscopy comes back "unremarkable".
I had my vitamins D checked a year or two ago and don't recall the number but it was high-normal.
I take 5000 iu daily
4000 or 4500 is in Summer
D3 gel capsules
I might get tested again. We'll see. I might have to lower my intake a little.
Love the stuff!
No test has shown any vitamin deficiency, and I have had many many tests. I take super folic acid, and iron (I'm anemic) and copper (I do have a copper deficiency which is almost unheard of and mine is idiopathic). I take E and A, and a multivitamin, too.
I think those of us with Immune Disorders often have trouble absorbing vitamins and minerals, even tho' our diet is rich in all the nutrients we need.
With all the supplements I take I NEVER have an excess of any of those substances when tested.
It is important to have all the tests related to our weird symptoms, as something might show up that is the cause. However, for me, no deficiency has been found (except copper, which as I said, is so rare as to be non existent...and I take 10 mg of copper a day, and now I do have some copper in the tests, but still below normal....before I started the copper I had NO copper in my tests. Weird.)
I am re-examing some of the supplements I take, hoping to eliminate some as I go forward. But that would be things like cistanche and some others. I ALWAYS check my supplements with the NIH evaluations, to be sure there is NO HARM in taking them.
We do what we can, and inform ourselves to our best ability.
Hugs, Elaine
How expensive is it to get full panel vitamin test? I got my D tested here in Taiwan and it was quite pricey compared to every other blood test I got. I think mines was at 11, which is not good LOL
My docs don't seem to care, so I'll see what the rheumies back in SF have to say about supplementing.
Anyone here try the Coimbra Protocol? 1,000IU for every 1kg you weigh
From vitamin D to hormone D: fundamentals of the vitamin D endocrine system essential for good health1,2,3,4
© 2008 American Society for Clinical Nutrition Am J Clin Nutr August 2008 vol. 88 no. 2 491S-499S
"This article identifies the fundamentals of the vitamin D endocrine system, including its potential for contributions to good health in 5 physiologic arenas in which investigators have clearly documented new biological actions of 1?,25(OH)2D3 through the VDR. As a consequence, the nutritional guidelines for vitamin D3 intake (defined by serum hydroxyvitamin D3 concentrations) should be reevaluated, taking into account the contributions to good health that all 36 VDR target organs can provide."
"Scientists and nutrition experts at the 13th Vitamin D Workshop held in 2006 agreed in a consensus statement that "about half of the elderly in North America and two-thirds of the rest of the world are not getting enough vitamin D to maintain healthy bone density, lower their risks for fractures and improve tooth attachment. Such vitamin D insufficiency also decreases muscle strength and increases the risk for falls and is even associated with increased risk for colorectal and other major cancer"
" 1) vitamin D3 is the only naturally occurring form of vitamin D in humans and other animals and 2) vitamin D2 has only one-third the biological activity of vitamin D3 in humans (7). Given the significant differences in the biological activity of vitamin D3 and vitamin D2, describing a clinical trial by writing that "the patients received 10 ?g (400 IU) of vitamin D" is not a best practice when the patients actually received vitamin D2, whose biological activity is equivalent to only 3.25 ?g (130 IU) vitamin D3."
FUNDAMENTALS OF VITAMIN D AND ITS ENDOCRINE SYSTEM FOR GOOD HEALTH
*My Dr. uses the guidelines, recommendation of the Endocrine Assoc.)
http://ajcn.nutrition.org/content/88/2/491S.full
I think most symptoms for anything are linked to a vit deficiency.
It's a matter of working out what deficiency & the best vit etc.
Not easy, continual body maintenance it seems!
Keeps our brains active, eh lol
It's not always easy, but keep laughing, friends, the best medicine they say.....
Lotus1
I found out this winter that Zinc makes me feel better. I took it a few months ago to combat a cold coming on, hylands zinc cold tablets, and learned it made me feel better and continued, I bought some zinc drops now too and alternate form. I think it gives me more energy, less pain and helps mood.