Posted , 3 users are following.
Ok everyone. I want to know how long it took to correct your vitamin D. What you took and what were your symptoms. When they did your symptoms start to get better? What was the worst part of it for you? I have already done a pot about mine. I am looking for some hope that I will soon be over this nightmare! Thank you all for sharing!
0 likes, 6 replies
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ashley45849
Posted
EileenH ashley45849
Posted
My husband was on vit D supplements for about 4 months, 25,000 IU per week and started with a level of 7 (which means it doesn't matter which units it was in, it was mega low). By the time he'd finished his level was fine, well in the good range. But he'd had no symptoms at all other than high BP - which did reduce.
A lady on the PMR forum had awful joint and muscle pain and was found to be really low on vit D. Her symptoms improved within a few weeks and by the end of the high dose course (about the same as yours) her level was OK and she felt good. A few months later the symptoms returned and the vit D was low again. The GP gave her another course of vit D and then it stayed in the good range but she takes at least 1,000 IU per day all year round and it may even be more, not sure without asking her.
But the bottom line is: Is the low vit D the cause or a symptom of the problems you have? If it is a symptom - the symptoms may not clear up as you hope. I hope for your sake they do, the pain etc is horrible.
ashley45849 EileenH
Posted
EileenH ashley45849
Posted
MRI scans and blood tests don't always tell the entire story, especially with autoimmune disorders. The symptoms you have MAY be due to the low vit D. But they could be due to an unidentified illness that also causes low vit D levels. I have an autoimmune disorder that causes similar symptoms to those they say low vit D causes. I do not have ANY blood tests that show it though.
What I'm suggesting is that, IF your symptoms don't go away once your vit D level is back to normal and has been for a few months, they you need to pursue it further - possibly with a different doctor if the one you see now thinks there can be nothing wrong because an MRI and the blood tests they have done don't show anything. Because of normal bloods it took 5 years for me to get a diagnosis. I'm not saying that is the case - just don't discount it.
ashley45849 EileenH
Posted
EileenH ashley45849
Posted
On the basis of the symptoms which were typical of the vasculitis I have and the response to corticosteroids. I was typically stiff and had muscle pain plus other symptoms but my blood markers were "normal". Up to 20% of patients with polymyalgia rheumatica and/or giant cell arteritis never show blood changes and only a PET-MRI will show the inflammation, It is rarely done except in suspected cancers and ordinary MRI shows nothing, It requires a doctor who recognises it - which can be a bit hit and miss - and a lot of rheumies seem to think it is below them to diagnose it. Good ones don't though.
Sometimes US doctors make things over-complicated.