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Skin symptoms and success stories
Hi there! Thanks for being here!!! I can't tell you how happy I am to have found this forum. I've been on the misery treadmill for so long and thought I was just nuts or going to die without knowing what from. After changing drs. and finding out my d level was 9 and researching, I've learned a lot but had yet to find others who knew what I was going through.
I've had most of the classic symptoms for years now but I've not heard of anyone talking about developing skin symptoms. As I said it's been years of this progressively worse situation then in the last 2 yrs I developed a reaction to sunlight. I get itchy rashes that won't go away for months after a little exposure to sun. Am I too broken to fix??
I used to go out in the sun all the time in summer.. I'm hoping that replenishing my d levels to at least 40 will help.
Arg.
Please share some success stories so I know there is hope!
I've had most of the classic symptoms for years now but I've not heard of anyone talking about developing skin symptoms. As I said it's been years of this progressively worse situation then in the last 2 yrs I developed a reaction to sunlight. I get itchy rashes that won't go away for months after a little exposure to sun. Am I too broken to fix??
I used to go out in the sun all the time in summer.. I'm hoping that replenishing my d levels to at least 40 will help.
Arg.
Please share some success stories so I know there is hope!
The biggest one is not getting sick so easily with every virus that goes around. I still have most of my other symptoms. The hard thing is that I've had these symptoms my whole life, which may be why it was so hard to determine that vitamin D deficiency at least played a role in their severity. This includes getting sick so easily. I still have the issues, but I've had them my whole life, so it's hard to determine if I would've had the problems anyway with or without the vitamin D deficiency or if I've even had vitamin D deficiency my whole life, which I may have when thinking about how sickly I was as a young person.
Congratulations! I think 9na makes a great point... This is such a long recovery! Our entire bodies and all of it's systems have been changed by the deficiency and now need time to change back. Maintaining the higher levels is crucial for any real change to occur just as it took lots of time to 'break down'.
I must ask... Did you or do you notice improvement in other symptoms?
I must ask... Did you or do you notice improvement in other symptoms?
Yeah, I'm not sure if this is something like what you suggested, like the body needing time to adjust to the risen vitamin D or not. I did find an interesting website that might help some people. Did you know there are subtypes of eczema? I did, but only because I know mine is not the typical dermatitis versions of eczema. I can't pronounce the obviously Greek name of this subtype, but I did at least find the correct name of the kind I typically experience on my hands: Dyshidrotic Eczema. I looked at the description on the website and the picture they had. I'm fairly certain I can keep this from getting to the bad point I've had before with it becoming one solid blister. I'll be upset if it becomes a solid blister again, because that can take months to a year to clear up.
Wow - that's great news! :)
When it comes to the eczema - isn't it possible that this is because even though your blood levels have gone up, it will still take some time before the body benefits from the risen D level? Hope you figure out what causes it, if it's something else.
When it comes to the eczema - isn't it possible that this is because even though your blood levels have gone up, it will still take some time before the body benefits from the risen D level? Hope you figure out what causes it, if it's something else.
It went surprisingly well. They only poked me once. I got the test results in the mail. For the first time since this nightmare with vitamin D deficiency began I finally made it up over the 50 mark. That doesn't mean it will stay there if I don't keep a vigil or that I don't test it again in six months. Getting closer to the 100 mark would be best, but this is far better than I could've imagined. I couldn't believe I tested at 58! Something weird is still going on, though, because I'm staying away from the obvious triggers and the eczema on my hand is flaring. Before, I might have attributed it to the vitamin D deficiency, but this is an autoimmune issue I've had my whole life. I eliminated the chemical agents and the gluten and dairy a long time ago, so I'm not sure what's doing it this time.
How did your test go?
I'm in the same part of the country you are. Today the sun is bright here, but still too cold to have sufficient skin exposed for the vitamin D levels. Yesterday sure was dark and cloudy. For the next week we're expected to have low temperatures just above 30 degrees, according to the local meterology report I watched last night. There is still ice crystals on my deck, too.
My vitamin D level started out as 8. I don't think they've been testing the calcium. Once in a while they test the magnesium. I've been at 37 for about three or four years. I increased my intake of vitamin D3 in response to this. I was taking less than 10k for a while. I clearly need to take at least 10k. You should've seen my conventional doctor freak out when I told her how much I'm taking. LOL. You know how those guys are. They're stuck in the rut of one size fits all with things like vitamin D supplementation. I think it's the same with the magnesium, but I know taking too much of that is easier to do than taking too much of vitamin D and the problems far worse. I've had renal failure a few years ago, so until the numbers normalized I was told not to supplement the magnesium. My bowels didn't agree at the time, that's for sure. They never did figure out why I developed the renal failure a few years ago either. I'm taking the amount of magnesium that the neurologist wants, a minimum of 500 mg each day. If I'm still having problems with the IBS-C and the migraines, I wonder if more magnesium is necessary. I'm not going to without more information, though.
I hope I get good news on Tuesday, too. Thank you. I sure hope I am closer to the 50 level than before.
My vitamin D level started out as 8. I don't think they've been testing the calcium. Once in a while they test the magnesium. I've been at 37 for about three or four years. I increased my intake of vitamin D3 in response to this. I was taking less than 10k for a while. I clearly need to take at least 10k. You should've seen my conventional doctor freak out when I told her how much I'm taking. LOL. You know how those guys are. They're stuck in the rut of one size fits all with things like vitamin D supplementation. I think it's the same with the magnesium, but I know taking too much of that is easier to do than taking too much of vitamin D and the problems far worse. I've had renal failure a few years ago, so until the numbers normalized I was told not to supplement the magnesium. My bowels didn't agree at the time, that's for sure. They never did figure out why I developed the renal failure a few years ago either. I'm taking the amount of magnesium that the neurologist wants, a minimum of 500 mg each day. If I'm still having problems with the IBS-C and the migraines, I wonder if more magnesium is necessary. I'm not going to without more information, though.
I hope I get good news on Tuesday, too. Thank you. I sure hope I am closer to the 50 level than before.
Where in the US are you? I'm in Seattle... Land of little sunlight :)
After years of problems I found a doctor who tested my d level, thank God... I was at 9. I still have a month before they re-test. I take 10k d3 + magnesium and multi. I've read that it can take 3 to 12 months to get levels up to 50.
What were your levels to start with? You said you've been at 37 for years and still have issues.are they checking your calcium levels too?
Hope you get good news on tuesday!!
After years of problems I found a doctor who tested my d level, thank God... I was at 9. I still have a month before they re-test. I take 10k d3 + magnesium and multi. I've read that it can take 3 to 12 months to get levels up to 50.
What were your levels to start with? You said you've been at 37 for years and still have issues.are they checking your calcium levels too?
Hope you get good news on tuesday!!
Yes, I am most definitely using the natural vitamin D3. Vitamin D2 is only available through prescription in America, and is usually prescribed as 50,000 iu megadose once a week or more for some people. When I was so severely deficient that it scared the conventional doctor, I was prescribed this megadose for once a week and told to still take 2,000 iu of vitamin D3 everyday. Well, right now I am actually still trying to raise my D levels up to at least 50 and preferably more. So, until I see the doctor next Tuesday to test it again, I'm going to be taking the 10,000 iu of vitamin D3 everyday. Then, after the test results come back I will know if it's still only 37 or if it finally went up or if it went down since the last test about six months ago. Conventional doctors freak out if I tell them I'm taking this much, but if I were to only take the amount you take or 2,000 iu maximum under conventional medicine's guidelines my vitamin D levels would definitely plummet again. I don't need that to happen. I was so severely deficient when the vitamin D levels were first tested that it nearly killed me. It's no wonder that I even caught some vicious virus syndrome that doctors didn't even have a name for. I still wonder if I had Epstein Barr Syndrome. I was in bed for nearly 24/7 for a solid month.
Doctors here in Norway don't seem to know much about VDD at all. My doctor told me that if my levels got to 50 nmol/L that would be great. Hello - I'm 30 and breastfeeding and probably should be well over 100 to be 'safe'. Anyways, my point is that sometimes the conventional doctors are way too busy with their numbers and black/white-reality to find interest in a field like this, where the answers are not easy and black/white and everything will differ a whole lot from person to person.
Is it D3 you've been taking, by the way? My doctor prescribed me with 800 IUs of D2 a day, so I guess I would have to be sick for quite a while if I hadn't searced for info myself...
Here in Norway we have a very different welfare-system from yours, as you may know. Many americans would see our society as 'communist', I guess ;) But we really don't have to worry about health-insurance, for instance - healthcare is a right that all norwegians have :) Of course, people may have to fight to get what they want, but noone is left untreated because they're poor, if you see my point.
Is it D3 you've been taking, by the way? My doctor prescribed me with 800 IUs of D2 a day, so I guess I would have to be sick for quite a while if I hadn't searced for info myself...
Here in Norway we have a very different welfare-system from yours, as you may know. Many americans would see our society as 'communist', I guess ;) But we really don't have to worry about health-insurance, for instance - healthcare is a right that all norwegians have :) Of course, people may have to fight to get what they want, but noone is left untreated because they're poor, if you see my point.
Actually, I believe you are correct. I read the newsletters from mercola.com and the Vitamin D Council. They recommend a minimum of 50. The thing is, Dr. Mercola is a natural doctor and conventional doctors in America think that as long as one is not below 20, which is in the severe deficiency category, that one is not considered deficient any longer, even though natural medicine actually says that a minimum of 50 is the optimal range and that those of us with health issues should aim for the higher range, which is the same information you have. They're talking about 80 with more recommended test, as there are two types of vitamin D tests. All I know is that my memory isn't so great for which test is the best but I know that my doctor does use the recommended vitamin D test. She just no longer worries about my vitamin D levels, so long as I'm not in the severely deficient range. It's tricky to get tested in America without medical evidence suggesting the need for it. Insurance carriers are picky and don't like paying for the test. But, actually, I agree with you. It's very tricky to get the vitamin D up where it belongs.
Wow - sound terrible! But 37 is still in the low range, isn't it? (We have different scales - in Norway D i measured in nmol/L, while I think you use ng/ml? So our numbers don't match... ;) ) Is there a way to get you quite a bit higher?
Because I saw a list not long ago, that said something like this:
<30 nmol/L = severe deficiency
30-50 nmol/L = deficiency
50-75 nmol/L = possible deficiency
75-150 nmol/L = ideal area
So I'm thinking you might be in the 'possible deficiency'-category, and your system may need to be quite high in D to function properly?
Maybe I'm making no sense, but it occured to me...
In any case - I wish you both all the best and a total recovery! :)
Because I saw a list not long ago, that said something like this:
<30 nmol/L = severe deficiency
30-50 nmol/L = deficiency
50-75 nmol/L = possible deficiency
75-150 nmol/L = ideal area
So I'm thinking you might be in the 'possible deficiency'-category, and your system may need to be quite high in D to function properly?
Maybe I'm making no sense, but it occured to me...
In any case - I wish you both all the best and a total recovery! :)
Oh dear.... I was worried about exactly this. Having been defient for so long that permanent damage was done. I guess only time will tell, and I've decided to hold off depression/ discouragement until I've been on supplements and sunshine ( hopefully - if I can tolerate it ) for about 6-8 months. I'm terrified that I'm just too broken :(.
May I ask... What dosage of d did u take? D2 or d3? Did u take magnesium, calcium and/or multi vitamin too? How long did it take you to reach 37 and do they know why you plateaued?
I'm so sorry you got so sick recently and I hope you're feeling better .
May I ask... What dosage of d did u take? D2 or d3? Did u take magnesium, calcium and/or multi vitamin too? How long did it take you to reach 37 and do they know why you plateaued?
I'm so sorry you got so sick recently and I hope you're feeling better .
It's quite possible that many of the other symptoms are permanent. My last vitamin D test was pretty good, but not quite up to 50 where it's preferable. I still have most of the symptoms that Seattleanne mentioned. I've even had unexplained renal failure, as in no one knows how it happened. Yeah, sure I was dehydrated, but not because of failure to drink water. And, my blood glucose was normal. But, I got so sick I was hospitalized for five days. And, a friend had the same thing happen to her. We both have been diagnosed with fibromyalgia, too. I get more than the tingling in the extremities you're talking about. I'll get body wide parasthesia, which is painful and very similar to the peripheral neuropathy you're talking about in the extremities. I have the neuropathy in the scalp right where I get migraine symptoms. So, there is clearly a link there, but when you mentioned the tingling, that reminded me of the parasthesia, which can range from mildly annoying to downright painful. It's the waves of downright painful that are really bad.
I've been within the vitamin D range of 37 for a couple of years and still have most of the symptoms. Except, I do believe I need to be retested, since I just got over a cold virus that caused a secondary bronchitis and sinus infection that I had to take antibiotics for. Since I haven't had any of those for a while, it seems reasonable to ask my doctor to retest me. It's common for people with fibromyalgia to have a peculiar problem with vitamin D called vitamin D dysregulation. One of the vitamin D tests will test rather high while the other one will test really low. The trick is seeing if the doctor will even be willing to order these tests to check for it.
I've been within the vitamin D range of 37 for a couple of years and still have most of the symptoms. Except, I do believe I need to be retested, since I just got over a cold virus that caused a secondary bronchitis and sinus infection that I had to take antibiotics for. Since I haven't had any of those for a while, it seems reasonable to ask my doctor to retest me. It's common for people with fibromyalgia to have a peculiar problem with vitamin D called vitamin D dysregulation. One of the vitamin D tests will test rather high while the other one will test really low. The trick is seeing if the doctor will even be willing to order these tests to check for it.
I've read that long term VDD can cause permanent bone-damage, and my doctor told me that with old people it might me impossible to get rid of all the muscle-pain. I don't believe this is very common, though.
I recognise a lot of your symptoms, by the way - I hope it won't be long until both of us need to check the list on this forum to remember them all ;)
I recognise a lot of your symptoms, by the way - I hope it won't be long until both of us need to check the list on this forum to remember them all ;)
Oh! I forgot two really disturbing symptoms..
Grinding my teeth Mostly when sleeping but once it was almost like lockjaw... Odd...and a combination
of numbness tingling pain in my right upper thigh.
I do get tingling in my hands and feet too.
Grinding my teeth Mostly when sleeping but once it was almost like lockjaw... Odd...and a combination
of numbness tingling pain in my right upper thigh.
I do get tingling in my hands and feet too.
Migraine
fatigue from mild - extreme
blurred vision
vertigo
memory problems
slow/ foggy thinking
depression
chest pains
foot/ankle/leg/arm/shoulder/wrist/hand and finger pains in the muscle/joints and
lower back and upper back pain
excersise intollerance ( seemed to make me weaker rather than stronger and recover time got longer and longer)
very susceptible to catching colds and flus
night sweats
mood swings
dry skin
sun sensitivity rashes
change in allergies
swellin in hands and legs
weird heart beats
I think that's most of them. I tested normal on ra but my joints had begun swelling as in ra
fatigue from mild - extreme
blurred vision
vertigo
memory problems
slow/ foggy thinking
depression
chest pains
foot/ankle/leg/arm/shoulder/wrist/hand and finger pains in the muscle/joints and
lower back and upper back pain
excersise intollerance ( seemed to make me weaker rather than stronger and recover time got longer and longer)
very susceptible to catching colds and flus
night sweats
mood swings
dry skin
sun sensitivity rashes
change in allergies
swellin in hands and legs
weird heart beats
I think that's most of them. I tested normal on ra but my joints had begun swelling as in ra
Thanks for your response and the encouragement! I don't mind sharing symptoms, but need to emphasize that I suspect this has been going on for almost 10 years. Which brings up another set of questions: what are the effects of long term vit dd? Does any permanent damage occur with severe/long term vit dd?
So here are my symptoms: (continued)
So here are my symptoms: (continued)
Hi!
I felt the sme way when I recently discovered this forum! :)
I just got the diagnose myself, a couple of weeks ago - and have spent som time by the computer researching.
Do you mind telling us/me your symptoms? I'm always curious to see how others are experiencing their d-deficiency..
When it comes to skin symptoms, I don't know much. But I've been told today by my doctor that my suddenly dry and red eyes are probably a symptom, so I'm guessing dry/damaged skin could be, too?
Oh, and I do have a small area by the root of my nose (is this what it's called in english? It didn't seem right...) that have been dry, red and 'exemic' and impossible to 'fix' for several months now - since mid summer I guess. I believe it will be better once my d-level improves. And yes, maybe it was induced by the sun exposure? (Here in Norway we really don't have 'real' sunlight most of the year - only during the summer months of june, july and august ;) ).
I hope you'll experience improvement real soon! :)
I felt the sme way when I recently discovered this forum! :)
I just got the diagnose myself, a couple of weeks ago - and have spent som time by the computer researching.
Do you mind telling us/me your symptoms? I'm always curious to see how others are experiencing their d-deficiency..
When it comes to skin symptoms, I don't know much. But I've been told today by my doctor that my suddenly dry and red eyes are probably a symptom, so I'm guessing dry/damaged skin could be, too?
Oh, and I do have a small area by the root of my nose (is this what it's called in english? It didn't seem right...) that have been dry, red and 'exemic' and impossible to 'fix' for several months now - since mid summer I guess. I believe it will be better once my d-level improves. And yes, maybe it was induced by the sun exposure? (Here in Norway we really don't have 'real' sunlight most of the year - only during the summer months of june, july and august ;) ).
I hope you'll experience improvement real soon! :)
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