Vitamin D needs magnesium - PARATHYROID DISEASE WARNING

I've had real trouble with vitamin D supplementation. I was less than 4. Have osteopenia. I had megadoses of vitamin to try to correct this problem. I felt great for the first month or so. Then I started to have INCREASED FATIGUE, body aches, racing heart, etc. I stopped the D out of fear. Felt better but not good. Stopped and started again to test my reaction. Definite bad reaction to D. On an incidental blood test my magnesium was very low. In my search, I found out that D megadoses deplete magnesium. You must have adequate magnesium to process D and calcium correctly. That explains, (I think why I felt great at first but then bad (after magnesium was depleted. ) If you are put on megadoses of D without complementary MAGNESIUM you will have problems. So, possibly later after my parathyroid testing is done) I will be using spray-on magnesium chloride to try to bring levels up again before trying D once more. IMPORTANT - ANYONE WITH SUSPECTED HYPERPARATHYROID DISEASE SHOULD NOT TAKE D SUPPLEMENTS UNTIL CAREFULLY EVALUATED BY A DOCTOR. D will make calcium levels go to dangerous levels if you have this disease. GO TO PARATHYROID.COM - I am currently being tested for this issue so will not be doing any d until I know the answer to this. Have a nodule that looks like parathyroid adenoma but not sure. So, if you have problems with D supplementation, definitely explore your PTH, calcium (ionized and urine) magnesium. ALSO if you have any kind of immune illness you must be careful with D. Hope this helps. I am still learning myself so these are just issues to consider. Anyone in my position please write. Will be wonderful to hear from you!

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Thanks for the info ......can take away more than just the thyroid info. Phil

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Glad you posted this. parathyroid.com has a wealth of info that ANYONE taking high doses of supplements such as calcium and vitamin D should read. The Heart Scan Blog also does a good job of cautioning against the use of high doses of calcium. IF YOU ARE NOT TESTING YOUR BLOOD LEVELS REGULARLY, DO NOT TAKE HIGH DOSES OF ANYTHING. You can mess yourself up royally.

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Yes, I know! Tell the doctors that! All they were looking at was the low D. So they just blindly put me on megadoses. They didn't bother to check magnesium and usually don't. I'm still not sure I don't have hyperparathyroidism. Have a nodule that doesn't show on RAIU. Have terrible reaction to D and calcium foods or supplements. Think will find out about this with a sestamibi scan - if I can get a quality imaging here in Maine.... arrrrrrgggghhhh.

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Kombuchababy: On a totally different topic, why the particular pseudonym? Do you use kombucha? PatriciaSami

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You are absolutely right and you must stand up for yourself with your doctor or get a new one. I had been complaining for years about achy joints and being so tired I didnt want to get up. My calcium levels were high so they checked my PTH. My PTH was high then I went for 24 hour urine test and 3 day blood tests and the doctor said I had a vitamin d deficiency and put me on vitamin d. I too had already done my research and found www.parathyroid.com and questioned his judgement and he would not back down. He insisted I had secondary hyperparathyroidism and I would feel better taking the vitamin d. I went for a 2nd opinion and he gave me the same diagnosis but in my head I knew I had hyperparthyroid and asked if I could get the sestambi scans and he said no. So I found a Endocrinologist who specializes in the Parathryoid and thyroid and does the minimally invasive surgery. Low and behold I got my scans and I had a cyst on my parathyroid. He also told me he was proud of me for not listening to the 2 schmucks who misdiagnosed me and found him. I had the surgery dec 20th and am doing very well. My calcium and pht levels returned to normal and every day my achy feet feel a little better. Be persistent or find another doctor, they all didn't graduate 1st in ther class!

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Yes, Kombucha is great stuff for me. I had a 22mm gallstone and drank kombucha tea for three months and it went down to 10mm. Kept drinking it so probably gone buy now. I actually cancelled gallstone surgery. Doctors were amazed when they saw the sonogram. I think you can probably do this with apple cider vinegar and water too. But I love Kombucha!

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Achy feet! Oh my God! Mine too. My hips are killing me too. Did it feel like your legs weighed 100lbs each when walking? Shooting pains in head? cramping hands and feet? Just wondering...

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They always talk about kidney stones with parathyroidism but I think it creates ALL KINDS OF STONES, gallstones too. The extra calcium has to go somewhere. Any kind of calcification in skin, muscles, bone spurs etc. Kombucha helped me with my gallstone so I just keep drinking it. Not everyday but at least two times a week. Don't know if it will work for anyone else but it helps me.

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I started with trouble sleeping at night and figured that it was part of pre menopause. Then my toes would twitch like in a cramping position and I could not let my legs be on top of each other the weight of the leg would cause discomfort and then I would become anxious. I mentioned this to my chiropractor and he suggested calcium-magnesium before bed. I would take it and I would sleep and my toes stopped cramping. But I was still tired and having some headaches and when I walked the dog every step was a challenge. I would fight it and continue to walk but was exhausted when I would get back. I also had trouble focusing at work, mind you i felt all this before i had even read the symptoms of hyperparathyroidism. I mentioned this to my PA and she found the high calcium and high PTH and then I took it from there. I would have on occasion indigestion and heart palpitations in the evening. I am a very healthy person normally and have been taking a nutritional supplement for 16 years so I was quite aware of the changes happening to me. I never had kidney stones, I was diagnoses with osteopenia this year prior to the finding of the hyperparathyroidism. One doctor says it's within normal range for my age 56 and not to worry. I eat a very healthy diet, do yoga and take my nutritional supplements faithfully so I feel confident that I am on the road to recovery. I will be going for my next check up in April. Please find a doctor you can relate with and get the tests needed to be diagnosed. Hyperparathyroidism foes not get better and long term causes more problems. There is nothing you can take or eat to cure it the only solution is surgery. Very often the average doctor does not recognize your symptoms for hyperparathyroidism and will suggest other alternatives. Stay strong and fight for your life!

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I have had thyroid and parathroid disease since I was 23..I am 58 now..I do take two different kinds of Vit. D.. but, my kidney and bone disease doctor checks me every 6 months which includes a 24 hr urine. I have osteopenia..they wanted me to start a drug that "could" result in bone cancer..I choose not to take it at this time..I decided, for now, that I will work on nutrition, exercise, and yes add magnesium..I am glad to know they have a spray..anyone know where I can get it?? I have chronic gastrits..so my stomach does not tolerate much..thanks

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DivaT - I checked out all the places that sell "magnesium oil" (you can spray it on your arms and legs) which is just magnesium dissolved in water. But they were all so EXPENSIVE. I did my research and found out the the best magnesium is MAGNESIUM CHLORIDE also known as NIGARI In Japanese. I found a place that sells Magnesium Chloride flakes - pure food grade Nigari- for making tofu of all things. Anyway you buy pure magnesium chloride Nigari and dissolve in water and then spray it on. The first link tells you how to make Magnesium oil and the second link is where I bought my magnesium chloride Nigari. Don't know if they still offer it but worth a try. Much much cheaper than buying thru other places. You will pay shipping but can get 20 times more magnesium for the price of one little bottle of "magnesium oil".

http://www.ehow.com/how_5637686_make-magnesium-chloride-oil.html

http://www.naturalimport.com/inc/sdetail/6922

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CHEEKS - Thanks for the pep talk! Sometimes I get so discouraged and it's nice to have support! I am going to go to another endo. He's pretty far away but supposedly a major expert. Waiting til I have the urine calcium test results before I write him a letter with all my labs. I want to know if he can help BEFORE i go all the way down there! I am tired of people taking my money and then saying..."hmmmm not sure..." or putting me on MORE vitamin D when the whole reason I saw them is that I CAN'T TAKE D. heeee heeee haaa haaa hoo hooo and life is beautiful all the time.

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Kombuchababy - Can you call his office and talk with them? That is what I did. I called and asked if was a specialist in Hyperparathyroidism and they told me yes and then I asked about the minimally invasive surgery and they also told me yes. He does them routinely and is considered an expert. I then told them all my symptoms and told them the diagnosis I was given and that I believed them to be wrong and wanted a second opinion. She scheduled me for an appointment for 2 months away becuase he is very busy and she asked me to have my test results send over to them in the mean time. Two days later they had read my results and they wanted me to go for the ultra sounds and the sestambi scans. I had those done and 2 days after the tests they called and told me that I was right there was a tumor and we scheduled an appointment for surgery. I have not even had an office visit with this doctor but he has already done more for me than the others combined. When my appointment finally came I was already scheduled for surgery in 10 days and he just explained the procedure and the recovery and asked if I had any questions and I was on my way ready to have this taken care of in 10 days. He was excellent! If you think you have found a good Endo call and ask questions before you travel too far for nothing.

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One of the ways the body controls calcium is a variety of calcium scavenging proteins. These all need to be carboxylated by Vitamin K2 so taking this Vitamin is important to controlling calcified stones and arteries.

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Hi Everyone,

I am new to this forum and website. I found it while looking for resources for hyperparathyroidism. I have already learned so much and I thank you all. I have not been formally diagnosed with hyperparathyroidism but after researching how I feel, and our families history with auto immune disorders I started asking questions of my doctor and getting tests. My most recent tests (last week) included blood work for Vitamin D ( I was tested last year and was low then too and went on a 50.000 unit supplement for 6 weeks) , parathyroid hormone, and Alkaline Phosphatase (which is a test that will show liver function and or bone disease). My Vitamin D was at a 14.6, 'Normal' is 30-80, my parathyroid hormone was 100 and normal is 16-73, my alkaline phosphatase was 151 and normal is 50-136.

I have dealt with most of the symptoms mentioned on these parathyroid boards and I have degenerative disc disease. It was first diagnosed last year and this year after another round of MRI's of my and neck and low back it is progressing and continuing to degenerate. As of two days ago my primary care doctor had the nurse call and give me the name of two Neurosurgeons to consult with for my spine. I just turned 50 years old and have had many of these symptoms for several years now, and others for a good part of my life. Our family has multiple auto-immune disorders and I believe this is all part of that. I am too young for all of this. Two of my three children (girls) have had their vitamin D tested and both have had depleted D. Both are on supplements for it or have been. Our youngest who is 17 came in with a vitamin d level of 7 three weeks ago. Her doctor said it was because we have had a long and snowy winter and in nearly the same breath said that there is an increase in teenage bone loss and fractures. This is not just about the sun. I am in the process of getting both of us to an endocrinologist for more testing. Our oldest daughter 33 and taking care of this on her own.

I am looking into my options also with parathyroid surgery and found the Norman Clinic in Florida which has a fantastic reputation for this surgery as minimally invasive, 1 inch incision, in and out in four hours. That is what I am looking for and am looking into how I can work with Dr. Norman. My insurance will cover the surgery but he has a $1200.00 consultation fee for patients coming from out of state because of the paperwork etc that needs to be done ahead of time for out of state patients.

Has anyone had this kind of microsurgery that has not done it with Dr. Norman? If so have any of you had in done in Wisconsin or Minnesota, which is the area that I live. I am looking for someone with the same kind of expertise that Dr. Norman has but locally. Any suggestions would be gratefully welcomed.


Thanks so much!

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Wisewoman - LOW D is a SYMPTOM of an ongoing disease process. IT IS NOT THE CAUSE. In certain disease processes such as Hyperparathyroidism, (and others) the body down- regulates D as a PROTECTIVE measure. D acts like a steroid in the body and pathogens LOVE steroids. They proliferate on D. In Hyperparathyroid disease D can cause calcium to go to dangerous levels. The problem is that doctors find the low d and think supplementation will fix the problem. At first you usually feel better and then symptoms get worse. Be aware.

Best wishes and hope you find wellness,

Karen

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KOMBUCHABABY,

Thanks Karen for your post. I've been reading a lot in the past few days and quite a bit today on the inspire website boards and I am really suprised to learn about the other side of D. I had no idea that it could cause the problems that it can. It is making me wonder about taking any more of this 50,000 unit vitamin D I was just prescribed. My sister is on high dose D as well and has RA, Sjögren's, and has had ischemic Bowel and necrosis of her hip joints and they are talking about hip surgery. She also has been diagnosed with an inoperable brain tumor at her brain stem. She has already been on one round of high dose D and is now on her second. She is continuing to have severe leg pain to the point of applying the maximum dose of pain patches allowed. She has not been tested for her parathyroid as far as having her blood drawn to look for the actual numbers but was told a couple of years ago that the doctors could see that she had swelling in her parathyroids. She has had many of the challenges with getting tests run and seeing doctors that others here have shared so I am not sure when she can get in to have blood work for this but I am really thinking that her parathyroids could be at the heart of a lot of what is going on with her. Thanks again.

Nellie

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Try Petter Gillhams Calm plus Calcium it is formulated to prevent a surplus of calcium robbing bodys vital magnesium.
You can read about it on vitacost.com

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Thank u for advice, I hope u all feel better! U r all in my prayers.

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So glad you sent this in as I am taking mega doses of liquid Vitamin D. 8,000 a day for nearly non-existent Vitamin D levels. I have severe osteomalacia and am in pain all of the time although I think the mega doses are working as I am in less pain now than even a few days ago. I also have "unusually severe osteoporosis" with T scores of -4 at all sites and my Z scores indicate there is something else wrong as they are all at a -2.9. This all came as a surprise. But a cat scan showed compressions fractures in my spine and a Shmorles Node (pardon my spelling). Of course they followed up with a DEXA scan. I will go look at the site you put in your post. My grandmother, who raised me, had her parathyroid glands removed and was on medication the rest of her life. But I don't know why. And she is gone now. But thank you for the heads up on the Vitamin D. I do take magnesium of 1,500 mg a day though so maybe? I just don't know anything about all of this since I was just diagnosed last week with the osteoporosis and osteomalacia.

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