My doctor prescribed 50,000 IU of Vitamin D every week for four months due to a Vit D deficiency. I am often very sensitive to medications, even plain things like Tylenol, and feel awful after taking them. I have avoided taking the Vit D pills, but know I should.
My question is: has any of you had a bad reaction to large doses of Vit D, or is it not a big deal, since as my doctor explains it, it's just "filling up the empty reservoir" and should not result in a bad reaction. I've heard THAT before from doctors, so just wondering what you all have experienced.
I have heard you can take to much vitamin d but I dont know what would happen. Like you I react to everything even natural stuff. I just started taking D what symptoms were you having that the doctor checked you for that??
I had had severe fatigue for a long time, and the endocrinologist (my 3rd one) checked me for everything she could think of, and tests came back showing very low Vitamin D. I guess it made sense -- I seldom spend time outside, and we live in a cold and rainy climate, so where would I get the sunshine needed to make Vitamin D myself? The dr. said my 'reservoir' of D was empty, and taking just a regular daily dose would never let me catch up to where I should be, so she prescribed the big dose. I see others here have had the same prescription, but no one comments if it had side effects.
Aside from this, I also had (have) ringing in my ears, aches, pains, feeling miserable all the time, poor memory, mentally dull, lethargic. I never started taking the big-dose Vitamin D, and in the meantime another doctor diagnosed a tick-bite disease and I'm on antibiotics for that, feeling better enough to think about taking the Vit D tabs. I am recently taking about 1000 to 2000 IU of Vit D3 each day, sneaking up on bigger amounts, and so far no problems -- I actually feel better.
I've read that the usual recommended daily allowance of Vit D is likely insufficient for people who don't get sun, and the supposed level of toxicity is about 2000 IU, but if my tank is empty, then I'm not concerned about overdose, just about a bad physical reaction to a big whopping dose. Since I posted a few days ago, I've been taking the smaller 1000 - 2000 doses of Vit D, so it's giving me courage to take the huge doses like the dr prescribed. Just a nervous Nelly here.
Thanks for your response, it's appreciated. Are your Vit D levels low too?
I too was prescribed 50,000 IU a week...... for 12 weeks. I seem to be in the same boat as you as far as the symptoms and the sensitivity to medications. I was very reluctant to take the large dose and waited until I saw my regular doctor (which didn't give me much reassurance).
What happened is I went to for my regular female checkup (which was 3 years overdue) and told my gyno some of the problems I had been having. She seemed concerned and did some pretty extensive bloodwork, and because of the joint and muscle aches, referred me to a Rheumatologist. In the meantime some of my blood work came back abnormal such as the CRP and SED rate levels (which are indicators of inflammation somewhere in your body). I saw the Rheumatologist and he suspected fibromyalgia, but still wanted to do a few extra tests to rule out other things. One of the tests was my vitamin D level which was 16 and dangerously low.
He just called me in a prescription and had his nurse call me and tell me to follow up with my regular doctor!!! I was ok with that until I got to the pharmacy and found out the prescription was for 50,000IU's!!
I was very reluctant to start taking such a large dose without being under doctors supervision, so I made an appointment with a regular doctor. I went to him and he didn't know anything about vitamin D deficiency and told me to just take it like the other doctor told me to. I have been searching for a doctor who is educated in this issue, but haven't had much luck finding one.
I started taking it and as of Friday have been on it for 6 weeks. I seem to feel a little better, but not what I expected to be feeling. I have been so tired and achy for so long with no answers as to why, that I thought this would be my answer. I have read many things on vitamin D deficiency since then and most everything says that it is usually an underlying problem that causes the deficiency. You don't just become deficient. I myself, drink plenty of fortified milk and dairy products, and take a daily multi vitamin and have been for quite a while. That was the last thing I would have ever thought would be low with me!!!
I have also been taking caltrate with vitamin D and cod liver oil. I have had extreme problems with memory lately and have read that cod liver oil is good for the brain. I don't mind taking something that is natural like vitamins and minerals, but I just absolutely despise taking prescription medication.
I know this has been a long post, but I have been on this site for several months and have not come across anybody that has had the same problems as me, and it feels good to be able to discuss things with someone who understands.
Thanks for posting, and thanks for reading this!!!
Oh by the way did they test you to see if you have lymes disease before treating you. That is very serious if you have it dont take it lightly and make sure you doc has experience in it. what state are you in? I am in michigan it is very common here I know alot about it and you have the symptoms.
My neurologist did a Lyme Titer on me and of course it was negative, but I have heard from many people that it is very hard to detect Lyme Disease. I too have had strange symptoms such as dizziness, pressure in my head, extreme fatigue, night sweats, facial numbness, heart palpitations, ect.... Have either of you had any of these symptoms? My neurologist did MRI's on my head and neck, but said all looked clear, and don't really know where to go from here.
I do know I have elevated CRP and SED rate levels which indicate some sort of inflammation, and Low Vitamin D, but not sure what else. I can't seem to find a doctor who knows what is going on. If it wasn't for feeling so extremely tired all the time I would just give up.
Also, when you take the weekly vitamin D dose do your arms and legs cramp for a few days after you take it?
Yes, interesting you should mention Lyme ... I wrote you a long answer, but the internet chewed it up somewhere. I finally found, after a couple dozen highly educated doctors, a doctor* who tested me for Lyme and other similar diseases -- I have one that is like malaria, carried by the same tick that carries Lyme. I'm on the antibiotics now for both diseases, and so far, so good. I'm feeling a little better. Some days my memory is actually almost normal. Other days...not so much, but I'm better than I was.
*We are in California, and there is Lyme etc. out here too, but not a lot of doctors take it seriously, as you know. I am lucky and there is a Lyme specialist not far away who seems to know his stuff and uses good labs to run the more accurate tests. I didn't know you have it in Michigan too.
Here's a trick I discovered: I was having trouble sleeping because I hurt so bad all over, and out of desperation, I took some Benedryl to help me sleep. After all, it makes everybody a little drowsy, and since I'm such a lightweight, I figured, what the heck, it would probably knock me out. And it did! I started getting a full night's sleep again, and that truly helped ... and when I was foggy and unable to focus during the day, sometimes a tiny bit of Benedryl helped then too. I don't think it's just the 'sleepiness' effect, instead I think it reduces some of the swelling in my joints and my neck and my head, and I can think straight again. It's really amazing. My neck and joints stop 'clicking', and suddenly the house work starts looking interesting again! I'm going back to the dr soon and will let him know about my little discovery.
I think I got a Vit D deficiency because we moved from a sunny place to a cold and cloudy place, so I don't spend time outside like I used to, and then when I got Lyme etc., I never went out unless I HAD to. Doesn't surprise me that I'm deficient in Vit D, so I don't know that I have any underlying condition. I'll have to find my blood tests and see how low I am/was .....
Thanks again ... it's good to know we're not alone ... well, sort of good to know! Keep trying, keep trying to get well everyone.
I'd suggest you keep trying to find either an infectious disease doctor or an immunologist or hematologist who has an interest in this area ... I see from your profile that you live in the Deep South, and there is a tick borne disease called STARI, for Southern Tick-Associated Rash Illness, similar to Lyme. If you can find a doctor who focuses on that, maybe you will make some progress. Even within Lyme, it seems to me from what I read that the tests are very specific to a particular bacterium, and so the tests (which aren't very sensitive anyway) won't pick up the 'wrong' bug.
A very nice, well-educated, and highly experienced doctor told me that anyone who really has Lyme is 'near death', and that anyone who is NOT 'near death' by definition does NOT have Lyme. That's a bit of strange logic ... like saying that someone with cancer doesn't really have cancer because he's not yet at death's door. There is a lot of denial about Lyme and other diseases, I think because doctors are now so schooled in looking at the test results instead of at the patient and the symptoms.
So all that means, don't give up. Keep looking. The internet is your friend, and just keep looking and reading till you find the right doctor to pay attention and work through things with you. Hang in there.
I don't know about the leg and arm cramps after taking the Vit D, that may be the side effects I was wondering about, so thank you for the information. Take care.
Except for the following paragraph this is info I posted on another part of this site:
I am adding one more thing because someone in this thread mentioned cod liver oil. I think the Vitamin D Council people believe that if there are large amounts of Vitamin A in cod liver oil it may block part of the action of the Vitamin D. Read the site for more info.
Everyone here, please see the following web-site with important Vitamin D information:
See the section on Pharmacology. (Look at all the other sections too!) Many of you have said your doctors have prescribed Vitamin D. It may be that they have you taking ergocalciferol, which is not as potent as cholecalciferol, according to this site. You do not need to have a prescription for Vitamin D. This site says the best Vitamin D to take is cholecalciferol, which is a Vitamin D3 that is available over the counter. Do not take Vitamin D2.
The site says - SUPPLEMENT WITH CHOLECALCIFEROLThe important thing to know: cholecalciferol is the vitamin D to take. Do not let your doctor give you any prescription medication for vitamin D. The only exception to this is ergocalciferol. Although with ergocalciferol you must remember you are taking a drug—not a vitamin—that does not normally occur in the human body.
This site also has information on how to get testing. They recommend that if you are going to self-supplement you should get tested periodically. Some people will not need to supplement in the summer or contingent seasons. The only way to know is to test.
Also, some of you say that you get sun. This site explains the relationship between latitude and adequate sun exposure. Also, sunscreen blocks Vitamin D. You can probably never get enough Vitamin D from diet alone.
Educate yourselves. Your doctors may be less educated about it than you can be. Try to find a doctor who knows a lot about Vitamin D. It is your health.
by calwo, 11 minutes ago
It sounds as though some of your doctors think that supplementing you for 8 weeks or so with the 50,000 iu prescription, then continuing with a 1,000 iu over the counter D3 is enough. If your levels drop with the lower dosage it is my opinion that you are not getting a "bad" bottle of D3. You may not be getting enough D3. Depending on your latitude and season you may need more.
Go to the Vitamin D Council site (see post above.)
Also, I have heard that anti-convulsants such as Neurontin (gabapentin) can block Vitamin D. I do not know if Lyrica would fall into that category, so check.
And again, test, test, test.
If you believe you cannot absorb vitamins intestinally the Vitamin D Council site (under Links or Resources) has a link to sun lamps.
by calwo, 4 minutes ago
And another thing.
See the Vitamin D Council site (look above for link) and make sure that your doctor is testing you for the correct type of Vitamin D. You do NOT want the 1,25-dihydroxy-vitamin D test. You DO want the 25(OH)D test.
See this link for complete information:
I took vitamin d 50,000 UI.....supposed to be 1 a month for 3 months.
severe reaction---hands swelled, joints ached in fingers -- two fingers on right hand had sharp pains like a knife was stuck under my nails...this has lasted 4 weeks now-- (only i dose of vit d taken)
2 doctores said they never heard of such a reaction.
i had been having joint pain & upper abdom pain....parathyroid tumor was discovered. 1 parathyroid gland removed..felt great for about 2 months, then the symptons slowly returned.
calcium level is normal, parathyroid level has been fluctuating, but is being blamed on the low vit d level.;
doctors have no idea what is going on, why is vit d level low?? why the reaction to the d supple. (they don't feel the swelling was from the d supple, but this happened last year when my other endo prescribed d---i think a reaction 2x makes it clear it is from the d)
My endo prescribed the 50,000 does of Vitamin 2 two weeks ago after being lethargic, depressed, and having GI problems as well as a few other things going on and a round of tests done. Only thing hthat has showed up was my vit D level is at 18. I am supersensitive to meds and even OTC stuff too. I was so afraid to take this large dose. But I trust my endo and researched it.....and thought....it may just help me. So I finally took it today after waiting and being afraid for 2 weeks. I felt a little nauseas at first and ate some crackers and have been fine all day. Actually I feel like I have had a boost of energy...like a refreshing. So I will keep taking it till my levels get where they should. Have you tried it yet?
I don't even know where to start. I started having all of these back and leg problems about 2 years ago.Just felt awful. I kept telling my doctors that I felt horrible, being overweight my whole life I am acustom to doctors attributing everthing to my weight. Which of course they did.
Six years ago my doctor phoned me to tell me my calcium level was high and that I should have it checked out further that it could be somemthing called your parathyroid. So I had by clacium checked and it was normal ,then elevated and that went on until 2 years ago unitl I said some one has to check my paratyroid levels. It was over the top,found an excellent surjeon had the gland removed hoping to finally get some relief. I did not. I was getting terrible leg cramps had to eat bananas for the potassium and take mega doses of calcium, when they test my Vitamind D it was at 9 so I started taking 1200iu a day my level was up to thirty, acceptable.
Go back after 3 months and my Vit D level was down to 15,my GP insisted I see a endo who precribes 50,000 IUs a week ( 2 pills). I realize after 4 or 5 days the constant pain in my leg is much duller.
I have taken 3 doses so far.After the second dose I started looking on the internet and found out that in obese people the Vitamin D is not absorbed it stays in the fat cells, Then I found this site and have read only to find out I am not alone.
My advice is to take the Vitamin D. I also was concerned, but at the end of my rope so I took the pills and I am very happy to have some relief.
No, I never did take the megadoses of Vit D. I went ahead with the Lyme treatment and (with some setbacks) am making really good progress.
As I have read more about Lyme etc., there is a theory out there that low Vit D is a symptom of something else, not simply a lack of the vitamin. Vit D is actually a steroid (never mind that it's called a 'vitamin') and it affects something like 1000 genes in your cells to do more or do less of whatever their job in life is. I have read comments from people who have Lyme and are given Vit D, and they have a VERY bad reaction to the Vit D, because it is, among those 1000 genes, a suppressor of your immune system. If you have a bacterial infection like Lyme, you want your immune system up and running, not switched off or suppressed.
So I'm glad I didn't take the megadoses of Vit D, or any extra Vit D at all. I try to sit out in the sun when I can, but don't often have the opportunity. I am feeling much better tho, so I don't think my low Vit D levels were the problem: they were a symptom (and may still be, since I don't have them checked anymore.) The thinking is that the Lyme bacteria somehow hijack the Vitamin D and use it, so that giving yourself more Vit D when you have Lyme just feeds the Lyme. I don't know how well that's been proven, but the stories of Lyme patients ending up in wheelchairs after taking Vit D sure got my attention.
This link is the best comprehensive scientific journal on the correlations of Vitamin D and MS. Read the whole journal to get an all-new understanding on not only Vitamin D but other essential organic compounds that also relate to us whom have MS!!
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