Asked by DaniF on June 11, 2019
I assume you are not feeling well and that is why your doctor is saying “fibromyalgia”?
You took the 10,000iu for a month, why did you stop?
If you have a deficiency, you should take 8000-10,000iu for 8 weeks and then take a “maintenance” dosage after that. A maintenance dosage for a person weighing 150lbs is 5000iu and for every 25lbs over this you need to add another 1000iu. So for you that would mean 7000iu. A “healthy” level is 50ng/ml. At levels at and below 40ng/ml, you increase the risk for cancer and autoimmune diseases.
Did taking the 10K give you any new symptoms or the following symptoms of “hypercalcemia”: feeling sick or being sick, poor appetite or loss of appetite, feeling very thirsty, passing urine often, constipation or diarrhea, abdominal pain, muscle weakness or pain, feeling confused, feeling tired and bone pain. If it did then you have a “hypersensitivity” to Vitamin D. If it did not cause symptoms, then you should not be worried about you calcium levels. You should not stop taking Vitamin D to have a calcium test. If anything it will prove one way or the other whether your calcium level is going high with Vitamin D intake. When you have a “hypersensitivity” to Vitamin D, even taking a “little bit” like 1000iu will increase your calcium levels. If for some “strange reason” it did raise your levels, it still does not mean you should stop taking the D. This then depends on how “high” your level goes AND if you have “symptoms”.
If your body is “starving” for Vitamin D, then yes it probably could cause a “rush of energy”. I would assume that this would level out, over time, once you take it enough and keep taking it.
I would try and get your Vitamin D intake/level straightened out first. After that since you have had your thyroid removed, if you are still left with symptoms, then you are probably not being given enough thyroid hormone or the right “types” of thyroid medicine and if your doctor is only looking at TSH levels and not FT4 and FT3 levels, that is the problem. This I can explain more because I myself have thyroid issues.
Here is the link for co-factors at http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. Magnesium is not the only one but if there is lack of magnesium intake, then Vitamin D can cause symptoms.
If you have any more questions, just ask!
Thank you, this is very helpful. Re: thyroid, I’m taking a desiccated thyroid (WP) and liothyronine, although my doctor keeps the ratio too low (currently around 12%), my free T3 is only midrange. To his credit, he has in the past recommended a daily dose of around 5000 iu, which is more than other docs have. I will get back on vit D, thank you very much for your help!
If you have most of the symptoms of “high calcium” then you need to STOP taking the D. Here is a link to hypersensitivity at https://www.vitamindcouncil.org/vitamin-d-hypersensitivity/. You need to copy this off and give it to your doctor.
As for thyroid, see this study at https://eje.bioscientifica.com/view/journals/eje/167/3/373.xml. It is pretty much showing that if you want someone to have their pre-thyroid hormone levels, if you are ONLY giving them T4 meds then you have to get them to a FT4 level of 1.50, which then gives you pre-FT3 levels and this will suppress the TSH level to around 0.02. (So really you cannot factor TSH levels in at all under these circumstances.) This study is only using T4 meds.
Thank you for the thyroid study. My tsh is suppressed but I know many people who’s endo’s manage their thyroid replacement by tsh levels, keeping it above 1, including children. I’m not sure how to handle vit d now. It runs low unless I supplement heavily, and I do feel better on it. I didn’t recognize any of the illnesses in the article but I am interested in having a parathyroid test bc of fatigue and a couple/few other symptoms. My doc says you don’t have a parathyroid test, you have a calcium test first. So this was my original question, should I avoid vit d before the calcium test? Is hypersensitivity in line with a parathyroid illness?
One thing you may want to do, is give me a “list” of all of your symptoms. For instance “fatigue” can be caused by “multiple” things. Maybe it will give me a different perspective if I know what they “all” are. Symptoms in a lot of medical issues “overlap”.
Once you start Vitamin D, on any given amount taken, you have to wait 8 weeks for it’s full affect on that particular amount. (This is because of half life’s.) So I would assume, again I am not a doctor, that if you stop all Vitamin D AND sunshine for 8 weeks, your level will go back to “pre vitamin D supplementation levels”. You originally stated that your D level was generally in the 30’s. I took this to mean without taking any Vitamin D? Is this correct? If it is the doctor could test your D levels every two weeks or so and when you reach 30ng/ml, then test calcium levels.
Yes, d levels stay low unless I supplement, and even with daily doses of about 10,000, it got up to the 60s. Different parathyroid sites list slightly different symptoms but from memory, fatigue – often need a nap, short term memory issues, frequent urination (not uti, thought maybe low aldosterone?), joint pain, foot pain, low energy, loss of drive even towards the things I really enjoyed doing like reading or baking, a weird anxiety though was never anxious, muscle weakness. These are unusual compared to pre-cipro antibiotics and subsequent thyroidectomy. Been trying to correct it since, some things have improved. Not sure it is a parathyroid issue but it is possible, especially with the chronically low D (I’m outside without sun protection walking dogs every day, so I’m getting at least some sun). To make sure I understand, I should avoid vit d until it drops to 30, and then blood test calcium? Without and d supplementation short of sun, my last calcium test a year or so ago was in the 9s, and not too long before or after D was in the 30s.
I’m gf and df, could that be why D runs so low even with sun?
Your level of 30ng/ml appears to come from sunshine. So now I need to ask where you live? I am mostly interested at what “latitude” you live at, which means USA state or country you live in.
I don’t think your symptoms are coming from having “hypercalcemia”. If they are, then I would think when you take the Vitamin D, your symptoms would get so much “worse”. You said you “feel better” when you take Vitamin D. I think it is just “low D” causing your symptoms. Here at the VDC we believe in maintaining a “healthy level” of 50ng/ml and you are below this. At levels of 30ng/ml and below calcium cannot absorb correctly from the intestines. At levels at and below 40ng/ml, your risk for cancer and autoimmune diseases rises “dramatically”.
The human body uses up a lot of Vitamin D daily and therefore it needs to be replenished daily. A misconception most people have is that once they get their Vitamin D level to a “good” level, then they can stop taking it. Levels will then fall by half every two weeks.
The reason your level “runs so low even with sun” is this. To get adequate sunshine exposure to make enough D, depends on where you live and time of year, wearing very little clothing when exposed (arms and face not enough), the time of day (out between 10-2pm), how much pollution is in the air, and color of your skin. In your case weight is also a factor which would mean you would have to spend a longer amount of time outside.
Now as an “example”. If you live somewhere where you will be able to get enough sunshine “year round” (latitude) plus your habit of walking dogs, that will give you a level of 30ng/ml, then you need to supplement also to get yourself to a minimum level of 50ng/ml. If the “sunshine” is only available, part of the year”, then you will need to supplement a “higher amount” of D, probably 7000iu, in the fall and winter.
So I am suggesting the following. If right now you think your level is 30ng/ml, then take 5000iu a day. This is a guess on my part because of your weight. I would then get a Vitamin D test 8 weeks from now to confirm you now have levels at or above 50ng/ml. I would re-access your symptoms at that time. If your level is good but you still have symptoms, then I would let your doctor test your calcium levels. If your calcium levels are “high”, meaning “out” of range and not just “high in the acceptable range”, then he can do further testing to see if it is a “parathyroid” issue or a “hypersensitivity” to Vitamin D.
The thing about mineral testing is this. When you have a blood test for calcium, it only measures the 1-2% in your blood stream and not total body stores. So even if you are “in range”, you could still be deficient and have “symptoms” of the deficiency. That would mean for example “hypo”calcemia. At the moment you do not present with any of those symptoms. If calcium levels are “high, out of range” that is a different thing. Again though, how high would depend on course of action.
By all means if you get any new symptoms or the old symptoms get even worse on the Vitamin D, come back and tell me.
My “guess” is if you do not have enough Vitamin D, the thyroid meds cannot work as well either. I have no scientific proof to back that up. Low Vitamin D can cause Graves disease and Hashimoto’s.
I see what you’re saying, I understood you absorb most sun through your eyes, but if that is not true then I’m not getting enough sun. I’m out from about 11-3, I live in the northeast so am covered for a lot of the year. I forgot to mention cramping when I take d, I’ll see if that goes away once d levels are at a better range. Thank you, you’ve given me a lot of great information. I’ve passed on the thyroid study, it was very well received and will hopefully help other thyroid patients.
Hello, hoping you can help shed light on matters. My 13 yo daughter’s D recently tested at 8.9 ng/ml. All my family tested low but that’s a different story! On a doctors advice I gave her two loading doses of 200 000 iu two weeks apart. After that I kept her on a daily 4000 iu with co factors of 200mg magnesium and 50mcg K2 (mk-7). It’s been about 6/7 weeks of daily dosing. We were pleased to see her severe acne was greatly improving, she also was more calmer and didn’t feel dizzy or car sick as before. However around 18 months earlier, out of nowhere my otherwise healthy daughter began to experience allergy symptoms and subsequently was diagnosed with a nut allergy. Thankfully she only had two sudden episodes of nut allergy. Yesterday though she had a sudden and more severe allergy attack to an unknown food source, leaving me very shaken and anxious. My belief was the D would help her with the allergies but now I’m questioning why this happened. Is it still early for a rise in therapeutic levels or is this the wrong treatment for her even though she needs it? If she has reacted to any of the supplements would that not have been the case on first contact? We live in Scotland Uk, she is 5”4 and 105 lbs. Doctors here do not support testing and retesting and I couldn’t afford private for us all, as we’re all having issues. We were abroad when I got tests done. Any insight would be greatly appreciated.
If I understood you correctly the 1st incidence of allergy came 18 months before the diagnosis of D deficiency and treatment? If I did not understand this correctly, please advise.
You thought she was “healthy” but she really wasn’t. She just reached her “breaking point”. Here at the VDC we believe in maintaining a “healthy level” of 50ng/ml. At levels at and below 40ng/ml, your risk for cancer and autoimmune diseases rises “dramatically”. At levels below 30ng/ml and calcium cannot absorb properly from the intestines. Your daughter’s level 0f 8ng/ml is in the “Rickets” range. (Anything below 10ng/ml but I have seen people with Osteomalacia symptoms in the 20″s.
When we give advice on treating a D deficiency we say the following. Take 8000-10,000iu a day for 8 weeks and then retest to make sure your levels have recovered enough. For most average people this means their level, in 8 weeks, taking that amount, should end up around 80ng/ml. If they have no symptoms at this point, then you take a maintenance dosage of 5000iu for a person weighing an average of 150lbs. If you weigh more, you have to take more. We stick to the 8-10K because taking very high amounts of D can dis-regulate the Vitamin D system. (It can also cause vitamin and mineral shortages.
So I don’t think the Vitamin D, K or magnesium is a problem. You are correct that if it were it should have shown up really fast in the beginning.
Her levels should have increased but the only way to truly know is by testing. When someone is under 10ng/ml, I really try and encourage retesting. Sometimes you can get test kits like these at https://betteryou.com/vitamin-d-testing-service. If she is the one with the biggest issues, and you can afford it, maybe just test her again.
Even though her levels have probably increased, it could take longer to reverse or help an allergy. Vitamin D does help with allergies but I cannot really say there are not exceptions. I think only “time will tell”.
In the USA they sometimes give antibiotics or medicine(Accutane) for acne. Was she given any of these? Did you happen to switch brands of Vitamin D right before the last attack?
As for anyone else. If they have any symptoms, treat them with 8-10,000iu for 8 weeks. If no symptoms and an average weight of 150lbs, give them 5000iu per day. If they weigh more than 150lbs, give them an additional 1000iu for every 25lbs over the 150lbs.
I tried to “google” supplements for allergies. There are some out there, for example, fish oil, zinc, selenium and pro-biotics. I would think if the 200,000 X 2 was going to cause any “vitamin or mineral” shortages, it would have done so earlier but “stranger things” have happened. Does she have any other symptoms at this point in time?
If you have any more questions, just ask!
Thanks for your reply. Yes first incidence of allergy was 18 months prior to vit D deff diagnosis. There has been one incident since and the third two days ago. My concern really is, why this great increase in severity at this point, why now? If the 200 000iu was going to deplete nutrients, what would be the most likely ones? My thoughts were this dosage would simply be soaked up by the struggling body. I do now feel nervous continuing this regiment , but agree retesting would help. Although this would not present what else could be missing for her..? Taking everything into account does it seem reasonable to continue for another 3 weeks, which is when she sees a doctor and test could be requested. She has not taken anything for the acne at all and I have not switched brands of the D. I understand k2 ( MK-7) is soy derived, wonder if that could have had a cumulative effect? Problem is, because she now has such an allergic constitution, she could potentially react to anything.
Also wondering, do u think the 4000 iu is too high for her body weight/ health circumstances for a long term basis? For reasons discussed I really do not feel comfortable with large dosages of supplements but prefer regular and average size doses. Further, she cannot swallow tablets, so chews the softgel before removing shell. Would that reduce the absorption/ efficacy in any way?
The 4000iu is perfect for her. It is what we would recommend. She could probably “technically” take 5000iu because she weighs more than 100lbs but since she is only 5lbs over, she is probably getting enough. Now Vitamin D has to be taken with a meal or snack for better absorption. I assume she is absorbing because her acne got better. Just how much she is absorbing we can only tell by a blood test. I do know that Vitamin D “oral sprays” do increase Vitamin D levels very well in people with “gastric issues” that prevent absorption. I have also told people that “rubbing D drops” on the inside of their cheeks should also work in theory if sprays work. You can dump the contents of a D capsule (some are powders), in a food and eat it and that should also work. I guess your daughters method would work also, in theory.
Keeping her on the 4000iu for 3 weeks should not cause a problem. I would assume if she is becoming allergic to the D, then you are going to start to have problems everyday.
Retesting would show if her levels are too high or too low for the amount of Vitamin D she has taken over the last 8-9 weeks including the 400,000iu. If her level is “way to high”, then let me know. She should stop taking any D for a “to be determined” length of time and then restart again depending on what the level is. (Even if it is very high, it does not mean this is what is causing her allergies to worsen but her level should be reduced.) If she is not over 100ng/ml(250nmol/l), then just the decrease to 4000iu, over time (8 weeks), will reduce her level. Again if her level does not match the amount of D she has taken, then we have to rethink how much she needs to take at this point in time. For example, if her level when tested is 38ng/ml(95nmol/l) something is not right, she should have a level of 50ng/ml (125nmol/l) or higher. If this happens, then it may be why the allergies are being an issue. For Autistic children we promote maintaining a level of 80ng/ml. I have no idea if giving her a “higher” level will help the allergies. This is why testing, especially for some individuals, can be very helpful.
So I do not know the “why now”. I am not a doctor or scientist, just so you know.
As for “depleted nutrients”. I have seen people have low B12 levels with low Vitamin D. I am unsure if they just sometimes go together or the lack of D caused the low B12. Many times taking D causes low magnesium and a blood test will not show the deficiency, you have to go by symptoms. Taking Vitamin D can cause low B6 and I had one person once go low in B9. So maybe any B vitamin can go low. Yesterday I tried to google “supplements for allergies”. I kept getting Vitamin D but was looking for other things. Perhaps you can “google” further. Sometimes it is all in what you type into the search engine. That is when I found mentions of fish oil, zinc, selenium and the probiotics. This was impressive at http://www.medicalnewstoday.com/articles/319038.php. I don’t know what kind of nut allergy she has. Maybe just the addition of a probiotic for a little while might make a difference. (It’s why I asked about antibiotics.) Vitamin D status is also tied to probiotics in the gut and gut “health”.)
Zinc is a co-factor. But low zinc does not appear to have symptoms that overlap with allergy. Same for selenium. I did not look up all the B vitamins.
I hope it helps and you feel better soon. If you do not get better, then really try and get retested. I say this because if your D levels do not increase to a certain level taking 8-10,000iu, then yo…
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