low Vitamin D?

ConnieD 227 post s 5-Jan-2008 10:02 AM	Hi Mark, The new doc tested my vit D mid-November and told me my vit D levels are too low (18) and that it is the cause of all my 'symptoms'- so he rx'd me 50,000 IU's daily for 60 days, then 1,000 IU's daily for life after that. I'm very concerned with this. Yes, I agree my levels were 'low', but my reading shows it could be 'insufficient- desirable 20+' or from another source '16-74 is normal- so maybe I just run low normal naturally, especially going into the winter months? My calcium levels are towards the higher end of normal- not peaked normal, but definitely sufficient normal- tested in Aug 2007, and my PTH (PHT?) normal- so it doesn't sound like my vit D low is causing release of calcium from my bones into my blood. So, 50,000 IU's for 60 days sounds like a recipe for kidney problems, from what I read? I'm just not buying off on all my symptoms being from low vit D when I have normal high calcium levels... Thanks for any input- Connie
s_vong7 3 post s 6-Jan-2008 2:31 PM	50,000 IU's a day is a lot. This does sound like a recipe for kidney problems. I do agree that calcium is good for you because it helps reduce the risk of osteoporosis. The only reason that this might lead to kidney problem is what you're taking and how well is works because with any supplements you take; You have to watch out for dissolve time and that's why medicine from a doctor and medicine you buy over the counter is such a big difference. Since supplements are recommended and there are so many out there. The general public probably doesn't know what's good and what's in it since the FDA doesn't regulate supplements. I recommend doing some research about supplements out there and see what's good and who said their products are good before you take them otherwise kidney problems may occur. I've taken Usana Health Sciences product for about a year now and I've actually started working with them too. Look up their products and compare it to other products. It's been rated the number supplements in America. Some of their products are in the PDR(Physician's Desk Reference- a book of medicine). Check this website www.revivinghealth.usana.com and feel free to leave comments and ask quetions.
SfromSoCal 15 post s 10-Jan-2008 11:03 PM	Dosing of Vitamin D (ergocalciferol) for Vitamin D deficiency has a wide range (up to 150,000 units/day). It can also be given less often than once a day, such as once a week. Many post-menopausal women with low Vit. D levels are on a 50,000 unit once-a-week dose for three months, then go down to a lower maintenance dose depending on their follow-up blood test results. Blood test results of over 100 ng/ml indicate toxicity. Early symptoms of toxicity are: nausea, vomiting, anorexia, headache, bone pain, metallic taste. You may want to ask your doctor to perform tests for Vit. D blood levels at particular intervals to reassure you that it OK (or find out if it is not...) which will allow you to feel comfortable taking this medication. If you actually have Parkinson's disease, this will medication will probably not help your symptoms, but will help your body absorb calcium, which is an important part of your bone health, especially if your risk for falling increases with the progression of PD. Last Edited on 10-Jan-2008 11:05 PM
ConnieD 235 post s 11-Jan-2008 11:19 AM	I'm NOT liking this vitamin D! I feel like a pin cushion, I keep getting these stabbing pains everywhere around my body, I have a constant ache in my abdomen (both sides) right under my ribcage, and I've had a headache now for 3 solid days! Not to mention my toes are cramping up worse than before!!!!!!! I'm not post-menopausal- I'm 36, and my calcium levels are in high normal range, my PTH levels normal- I'm absorbing my calcium great, with a bone density scan in November saying I'm at 140% for my age! I quizzed the pharmacist extensively before filling the rx and he told me he didn't think it was possible for me to have a low vitamin D test when calcium and PTH tests are normal and told me it was common to have slightly lower than normal D levels in blood during winter time - he advised me to immediately stop the rx if I felt any of these toxicity symptoms- holy cow, this is crazy feeling this bad because a doc is hell bent on my symptoms being from vitamin D deficiency- I'm not deficient!!! Thanks for you posts! Connie
SfromSoCal 16 post s 11-Jan-2008 6:23 PM	Connie: 18 is low (although the range varies with labs). Why did your MD say for you to take this exactly? Last Edited on 11-Jan-2008 6:25 PM
ConnieD 236 post s 12-Jan-2008 5:37 AM	I do not have a MD, I don't have a dx. I have a bunch of primary docs that have told me my problems are stresss/anxiety ridden (yet I don't/can't qualify for anti-depressant meds from their repeated mood questionaire's). This newest doc is convinced my low vitamin D is the cause of all my neurological and movement signs/symptoms (may I add that they are almost all on my left-side... vitamin deficiencies effect both sides of the body equally- they aren't one-sided) and he assured me I would feel great within days of taking this 50,000 IU daily supplement. I'm 36, work full-time, and have 2 young children- all these docs want to believe is that I'm anxiety/stress ridden and according to this last doc- I am now a 'hypochondriac' now too. I'm trying to find a doc who will take me seriously- I'm not sure this is the one either. The Requip has helped, I started feeling improvement on it in the first 3 weeks or so- I've been on it 6 1/2 weeks now. But now I'm taking this vitamin D that's supposed to be my cure all- but I feel worse, not better. 18 is low outside the 20-40 normal range, but 11 is deficient. What I don't understand was the pharmacist shaking his head telling me that if my calcium levels are high in normal range and my pth levels normal too- I am not deficient in my vitamin D. I told him I was worried about my calcium levels going screaming high by this 50,000 IU level and he told me not to worry about that- the calcium will not absorb and be exited from my body, but he said the vitamin D in these high levels could be extremely bad. He also told me that testing low in winter here where I live- Utah where we now have 2-3 feet of snow in our front yard- was not uncommon, but it did not necessarily mean I was deficient and my calcium levels and pth levels would confirm that I'm not deficient. This new doc told me that I can not get too much vitamin D, but my reading says too much is NOT good. And if my low levels were all my problems, wouldn't I be on top of the world right now after doing a week of this supplement- instead I feel like I've been run over by a freight train and my toes- the cramping has increased... maybe a sign my calcium levels are now TOO high as I read high calcium levels can cause extreme muscle cramping... I just don't read where it says these type cramps occur too often in the form of dystonia. That's where I'm at... seriously I'm ready to bag all doctors in Utah, stop the meds and check myself into the Mayo Clinic for real help as these medical providers here seem to be more controlled by the insurance companies than giving a damn to give adequate care to patients!
SfromSoCal 17 post s 12-Jan-2008 11:30 AM	If you are having neurological symptoms, you need to see a neurologist. If you have a PPO, go online with them and see who is in your network and call them yourself to make an appointment. Try to find one that is a movement disorder specialist if you can. If you have an HMO, your primary care doctor should refer you. (Remember they have huge incentives NOT to refer you to a specialist, so you need to push). If you ask for a neurologist, they should respond. If they refuse to refer you, go through the appeals process. Their refusal should be in their notes, so they will have to have a reason to NOT refer you. If they think you will follow through and appeal, they will probably just refer you. Also, if the MD said that you should feel good after a few days on the Vit. D and you don't, it is your responsibility to report that to him (otherwise he doesn't know). Report all side effects that have occured since you began that medication. Also, report what the pharmacist told you (docs confer with pharmacists, so he should be happy for the feedback). I urge you to call him on the next business day. Remember, doctors are advisers - YOU make the final decisions. So, get yourself to a neurologist ASAP. Last Edited on 12-Jan-2008 11:31 AM
ConnieD 238 post s 12-Jan-2008 2:48 PM	Thanks- that's what I've been trying to do, get to a MD neurologist. I've seen 4 neurologists in the past 2 years- one exclusively tested me for MS told me NOT MS and he thought a MD, then I was sent for a stroke evaluation as my symptoms are one-sided for the most part- that came back negative, but she told me to come back if they persisted. I returned to the MS doc for a final brain MRI and he said get to a movement neurologist- referred me to a new lady doc. She told me I had Fibromyalgia (my primary docs dx from 2003) and that I suffered from anxiety/stress- she did not even do a standard neuro exam, had me run down a hall and sent me on my way with I was 'too young' for these problems and to get back on anti-depressants. I then went to another neurologist who dx'd a friend of a colleague- this guy did the same thing, checked my eyes, reviewed my MRI's told me I had anxiety/stress issues, Fibromyalgia and to get lost. I asked specifically about PD and he said absolutely not and didn't even look at me when he said it- just scribbled away in his folder/chart. I decided to return to the lady stroke doc to tell her about my twisting toes as these other 'movement' neurologists discarded them as typical 'cramps'. Not one minute into meeting with her she told me "I would have to see your toes twisting to believe you". She told me I was researching things on the internet, that I was in severe denial of accepting stress/anxiety as my problem and I needed mental help! I packed up my MRI's and test reports and left- within 5 minutes of getting there I was out the door- billed $180 for that visit! There's a MD clinic at the University Hospital but they will NOT take you without a referral. My primary doc refused to refer me, said after receiving a call from the damn stroke doc that I was doctor shopping, suffering from Fibromyalgia and refusing to get anxiety/stress help (I refused to go back onto the anxiety meds for Fibro because I was pretty sure I did not have it) and that I might have RLS because it was SO common with Fibro- he gave me a 1 mg daily rx for Requip- and told me NOT to come back until after new year. At that point I decided he was history and I hooked up with this new doc through my physical therapist. She's been treating me for back injury- before and after my tremors started 2 years ago. She's watched my rigidity get worse and worse, my slowness/stiffness worse and worse, she was demanding I get a new doc- referred me to this new one. I saw him in November for the first time (my hubby went with me) and he was immediately quizzing if I'd been PD tested, that he was sure I did not have Fibro but that he'd run a full autoimmune panel and check for Lupus too. He told me to start the Requip and did the full autoimmune tests, another heart test, and this vitamin D test. I have no autoimmune problems, no heart problems according to that blood test, no arthritis problems of any kind- arthritis bloodwork was none- zippo he said, no Fibromyalgia or Lupus, no MS, no Wilson's, no Lyme, all I have (so far) is this low vit D. He actually increased my Requip to take it in the AM now too, and gave me this 50,000 IU daily rx to get my D levels up. If he was so convinced this low D was my problem, why the hell would he up my Requip- that doesn't make sense to me at all!! But I feel horrible with this rx- you're right that I need to call and tell him what's going on, but I don't think he'll believe me. He was SO ramming this vitamin D low down my throat at this last visit (hubby NOT with me then) and that it HAD to be the cause of all my symptoms. I'm 36, I work full time, I have 2 small children, I do have normal anxiety/stress in my life- but nothing that is causing me to 'qualify' for anxiety medications- doesn't that scream that I'm not making this stuff up?!! My calcium levels are high normal- my pth (parathyroid) levels normal- my body is absorbing my vitamin D properly.... the only test I've not had run now is an iron test- but my B12 is very high in normal range too, my hemoglobin and hematocrit red blood cells all in high normal range- so I highly doubt I'm going to test iron deficient... so is this vitamin D rx already creating so much calcium in me that I'm feeling over vitamin D'd- toxic like? I'll call him on Monday and tell him what's going on, but I don't expect he'll say anything more than to keep doing the rx no matter how crappy I feel. Crazy that my toes and arches are twisting and cramping up 10 times what they were a week ago......too coincidental that I've been on the 50,000 IU's vitamin D for a week now too? All I know is that I'm in a horrible rut here trying to get real medical care- these docs are bound to insurance companies and they aren't willing to really believe a patient, especially a woman in her mid-30s. I'm not supposed to have anything seriuosly wrong with me... and it will take a LONG time to get this figured out, I know that now- 5 years later I still can't get a right dx, Fibromyalgia was NOT it- at least I know that now! Thanks so much for posting to me- it's nice to talk with someone about this who's not jumping on me that I have anxiety/stress issues and to just get on with life. Take Care- Connie
MarkComes Pharmacy Forum 209 post s 15-Jan-2008 3:34 PM	Connie, sorry for my delayed response. Vit D is the new "hot" cure all. I am not saying that you should not take it but, I would recommend 2 thing for you. 1- get a second opinion 2- see a neurologist or movement disorder specialist Vitamin D is associated with many functions of the body. Please remember that Vitamin D ( along with vitamin A, E, and K) are all fat soluble which means they are stored in the fat tissue and slowly realeased in the body. Too much can cause severe problems for a long period of time. please seek a second opinions and get new blood tests. best of luck, mark
sanchez5247 1 post 2-Mar-2008 10:49 AM	I' am on 1,000 iu of vitamin D3 every day for rest of my life and for 12 weeks also on 50,000 iu of vitamin D once a week. plus I take a Mult. vitamin every day that contains vitamin D 400 iu. only thing that bothers me is my face gets hot and flushed is this a normal thing. also my family has a rare blood disorder and we keep looseing them as it is bone marrow problems and we all start out with D defecency. my sister was just given 32 months to live as she has non hodgekins and it is mantel cell lymphomia. I'm worried that this might happen to my younger sister and myself as she is a 7 and Im a 20 on our test. our cells are all normal so far does this mean that the two of us might stand a chance of not getting it as they found ours before it affectes the cells. Ive had breast and cervix cancer but in remmision. my mom is 89 and she has a blood cancer but she seems to be in remmision from kemo pills that she takes every day. they say if they can get my dieing sister in a remmision that they want to do a full stem cell tranplant on her. this is enough to prove to me that you need to keep your D levels up to a good range.
sanchez5247 2 post s 2-Mar-2008 11:03 AM	I also saw where you live, in Utah. well so does my dyeing sister and for the last three to four years she has cried to the doctors there ,that something was wrong and they all looked at her as if she was makeing it up. it wasn't until she went on a breather machine and out of it for weeks that they decided to do all the test on her and now maybe it is to late for her. We all know how our own bodies fill and maybe a lot of it is in some heads but don't quit going to doctors and also insist on them takeing every possible test that they can and yes insurance there also plays a roll in my sisters care she gets. also my little sister went threw the same thing here in Oregon and she had a anurissume and they had to work fast as we almost lost her from it. to bad that there are so many people who do cry wolf to often as it really make it ruff on all of us who really do have something wrong with us. also shame on all these doctors who just prsume we are all making things up. that is why they have test that they need to run at all cost.
ThePharmacist 14 post s 16-May-2008 5:11 PM	that is why this board is great. We are all here to help

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