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Information on the latest vitamin D news and research.

Find out more information on deficiency, supplementation, sun exposure, and how vitamin D relates to your health.

I found out in November 2015 that I have low ferritin 6(10-300) and low vitamin D of 19. I was prescribed 2 ferrous sulphate a day for the anaemia and 10 000ius twice a week of vitamin D3 for 10 weeks. Then in February 2016 I started feeling very ill, no appetite, lost 10 pounds in weight, strange surge like sensations, dihorrea, weakness in arms and legs, needing to lie down all the time, weighted feeling, heaving. I saw an endocrinologist who said that I should be on a stronger does of vitamin D3 so he increased it to 20 000ius twice a week. However I then started feeling worse and had my bloods rechecked by another endocrinologist on the 30th March 2016 and my vitamin D had shot up to 90 (after only taking 6 of the 20 000 ius) and my ferritin was 40 (10-300) but my iron serum was far too high at 43 (10-25). I have never felt so ill before. I am still riddled with bone pain and I can’t exercise, I can only stand for 5 minutes, all I want to do is lie or sit down. My GP is saying that the iron and vitamin D3 can’t have made me feel this ill. The 2nd endocrinologist I saw said I have iron poisoning. She said it will take 12 weeks to come out of my system and do not take any more iron or vitamin D. I have seen a rheumatologist last week as I have terrible bone and joint pain and stabbing pains all over especially around my wrists and ankles. He says that he doubts it could be due to the iron and vitamin D as I stopped them both on the 30th March. Can anybody offer me any advice please as to what is wrong and when I will start to feel better? Many thanks, Jenny

Ask the Vitamin D Council

Asked by  jennmbell96354600 on May 2, 2016

Answers

  • jennmbell96354600
    Participant
     jennmbell96354600 on

    See title

    Answered by  jennmbell96354600 on

  • IAW
    Participant
     IAW on

    Jenny I am not a doctor but can give you a suggestion to pursue.
    Sometimes Vitamin D can cause hypercalcemia. I would recommend reading the following http://www.vitamindcouncil.org/further-topics/vitamin-d-hypersensitivity/. You might want to copy it off and give it to your GP.
    The symptoms of hypercalcemia include: 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. You have a lot of these symptoms and it may be why your level increased really fast!
    If you take Vitamin D and have a magnesium deficiency you will probably get the following symptoms: •Irritability or anxiety, Nausea, Headaches, Insomnia, Fatigue, Muscle cramps/twitching, Weakness and constipation.
    I would either go back to your GP, the rheumatologist or pick a new Endo.
    If you have any more questions let me know. I hope you feel better soon!

    Answered by  IAW on

  • IAW
    Participant
     IAW on

    PS Do NOT take anymore Vitamin D until you find someone to help you!

    Answered by  IAW on

  • jennmbell96354600
    Participant
     jennmbell96354600 on

    Hi thank you for your reply, I really appreciate it. My calcium was checked when I saw the endocrinologist on the 30th March and it came back within range 2.22 (2.20 – 2.60) and adjusted calcium 2.16 (2.2 – 2.6). My TSH, T4, T3 and parathyroid have all come back normal. I do have raised thyroid antibodies but the consultants do not seem to be concerned about them. I definitely have all the symptoms of hypercalcemia but do my ‘in range’ calcium levels mean that I cant possibly have this or do I need a scan? or some further blood tests? I feel like I am getting nowhere with my GP and the consultants have each seen me then discharged me. Everyone is saying its fatigue or ME type of disorder but I’m pretty certain its not. I only became ill since I started on the iron and vitamin d3 so I know its to do with one of these and it is gradually getting better as each week passes since I have stopped taking them, many thanks, Jenny

    Answered by  jennmbell96354600 on

  • IAW
    Participant
     IAW on

    The thing I am happy about is that you did say “gradually getting better”!
    I am going to go with Endo #2 being correct. I think you have iron poisoning. Iron is a mineral and is fat soluble. When it comes to minerals, too much can cause a “hyper” state and you basically get the same symptoms as hypercalcemia. For example I had a lady once that was taking huge amounts of magnesium and had hypermagnesemia.
    Now let me ask you, was the 19 and 90 measured as ng/ml or nmol/l? When you first went to the doctor in November 2015, did you go because you did not feel well? What were your symptoms at the time if any?
    The 20,000iu twice a week equals about 5700iu a day. We usually recommend 5000iu to most adults but this is based on a weight of 150lbs. Do you weigh a lot less than that? Also if at some point you do take Vitamin D again, it is better to take it on a daily basis no matter what amount you decide to take.
    After you answer the above questions, I might have some more suggestions.

    Answered by  IAW on

  • jennmbell96354600
    Participant
     jennmbell96354600 on

    Hi thank you for your reply, my vitamin D was 19 nmol/L in November and now it is 90.2nmol/L. I went to my GP as I was getting increasingly tired and couldn’t exercise as much. I used to swim three times a week, 40 lengths at a time and I had to keep reducing this down as I was getting really tired. I was also struggling with tiredness at work. I also felt anxious and low at times for no reason. I weighed 129 pounds before taking the iron and vitamin D3 and I lost 10 pounds so now weigh 119 pounds. The thing is I never want to take the iron and vitamin D3 again as I am so frightened by it all. I’m still not myself and I am just so tired. I cant understand why my vitamin D was so low in November as I had been to Spain at the end of September. Our health care system in England just treats the problem rather than looks into why we have heath problems in the first place. I feel that they have thrown all this iron at me. Luckily I stopped taking it of my own accord and I only took 2 Ferrous sulphate tablets a day rather than the 3 that I was prescribed.
    My GP and the consultants can’t or won’t say why my iron serum was so high 43 (10-25) also my transferring saturation was 80.2% and my transferrin was normal at 2.06 (1.68 to 3.36). These blood tests were done on the 30th March which was 3 weeks after I had stopped taking the iron tablets and vitamin D3.
    The only additional health problem that I have is I have a multinodular goitre and my folate is too high 15 (3 – 12).,
    Would you know why my iron serum has gone up yet my ferritin is only 40 (10-300)?
    many thanks
    Jenny

    Answered by  jennmbell96354600 on

  • IAW
    Participant
     IAW on

    So in November 2015 your level was 19nmol/l this translates to 7.6ng/ml this means you were/are “extremely” deficient. When you got to 90nmol/l that translates to36ng/ml. We here at the VDC recommend a minimum level of 50ng/ml and that translates to your nmol/l measurement of 125.
    So when you went to the doctor in November, your symptoms fit a Vitamin D deficiency. (I also realize that low iron can cause tiredness.)
    No one realizes that Vitamin D levels, if not replenished constantly, fall very quickly. So your “Spain sunshine” was probably only good for a month, if that. For example if you had the perfect level of 125nmol/l right now and stopped supplements and had no sunshine, that level would be down to 62nmol/l in two weeks. Two weeks from then it would be down to 30nmol/l.
    Now nothing in your body works very effectively without Vitamin D. So my theory is if it was really just the iron that added the other symptoms, then not taking any Vitamin D may prolong those symptoms of iron over load. Also since you stopped the Vitamin D, the tiredness will probably never go away until you take the Vitamin D again. (All of the iron levels may return to normal once you increase your Vitamin D levels.) Lack of Vitamin D can also cause anemia.
    The good news is that if we give you Vitamin D your levels do increase. You will probably be able to take the 5000iu a day we recommend and make it to a level of 125nmol/l.
    I know you are scared but you should try again. If it makes you feel better than start with a lower amount and work your way up. Take 1000iu for a week, if nothing gets worse than double it the next week and so forth. JUST REMEMBER if symptoms start, then you may now be magnesium deficient! If you want to be really scared any level below 25nmol/l is “osteomalacia” territory. Anything below 87nmol/l and the incidence of cancer increases a lot.
    I recommend reading http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/.
    You said “The only additional health problem that I have is I have a multinodular goiter”. Do you take any medicines for it? I also have another theory on that one and will post after your reply.

    Answered by  IAW on

  • jennmbell96354600
    Participant
     jennmbell96354600 on

    Hi, thank you for all the information that you are giving me. I really appreciate it. I hadn’t realised how deficient I had been and I didn’t realise that my level would fall so quickly. I have had blood tests today to check on the iron and vitamin d, I will get the results of these back next week. I am vegetarian so I probably do not get a great deal of vitamin d in my diet. I also live in England so we do not have a great deal of sun. My thyroid results are as follows, serum T4 – 16 (8-19); serum TSH – 0.71 (0.1-5.0);
    serum T3 – 5.0 (2.1-6.0); thyroid peroxidase Ab conc – 282 iu/mL (0-75).
    I have a multi-nodular goitre but I am just being monitored for this once a year. The consultants are saying that as my thyroid hormones are within the ranges then I don’t need any medication.
    You have provided me with more advice than any of the specialists that I have seen. None of them have said that I should take any other vitamins with the vitamin D. I can see that I will need to start supplementing again at a low dose and take the relevant vitamins with it. Any other advice that you can offer me would be great thank you as I am so tired and just want to feel better, Many thanks, Jenny

    Answered by  jennmbell96354600 on

  • IAW
    Participant
     IAW on

    Part of the Vitamin D Council’s mission is to teach people that it is impossible to get the amount of Vitamin D a human being needs out of their diet. We were made to get it from sunshine but when that is unavailable ie: winter time and/or working indoors, then we need supplements or sunlamps. So being vegetarian does not matter but would matter for iron deficiency.
    Since you were OK before this mess started, I do not think you have a thyroid problem, YET but you are headed for one. You really need to correct the D deficiency to at least 125nmol/l or better and if still tired then you may want to relook at thyroid. When people already have a “standing issue”, than we say to try and aim for a higher level like 200nmol/l top of the range is 250nmol/l. (Science already knows that the official safe upper is 375 nmol/l.)
    I know a lot about hypothyroidism but have not really studied the antibody side of it in depth. I do know that Vitamin D deficiency is implicated in every “autoimmune” illness. You have thyroid antibodies and they are “very high”. (This is probably what is causing the multi-nodular goitre.) The reason they are NOT treating you is that you have a low TSH of 0.71. I cannot comment on the T4 and T3 because the big push here has been to do what we call Free T4 levels and Free T3 levels. You will notice that the range for the TSH is 0.1-5.0. but let me tell you an average TSH in the morning hours is 1.5 not 5.0. So you need to put these results in a safe place so you can compare them to others in the future if you have issues. If the TSH takes on a lower trend, than you might be headed for autoimmune Graves’ disease and hyperthyoidism. If it starts an upward trend, then autoimmune Hashimoto’s and hypothyroidism. Sometimes it will swing one way than another, hyper than hypo and back. I tell you all this so you are armed with information. Hopefully we will head this off with Vitamin D.
    So if you can take the Vitamin D, you may have a chance of bringing those antibody levels down or at least halting an upward trend but most Endo’s will not know this. So if I was you, I would try and get my Vitamin D levels up, have someone measure them and once it has been at 125nmol/l for quite a while (just guessing 4-6 months) then I would see what the antibodies are doing. If going down, great, if going up then you might seriously want to consider taking more Vitamin D.
    Thyroid hormone needs iron to convert. So after you are out of this mess you may still want to consider it again. No doctor I have seen has ever suggested more than one pill a day and then they retested months later to see what the level is. If it scares you really bad, then maybe like the Vitamin D, start slow and take one every other day and have someone retest in a month.

    Answered by  IAW on

  • jennmbell96354600
    Participant
     jennmbell96354600 on

    Hi, sorry for the delay in replying. I am more tired now than before when I was low in iron and vitamin D. I will find out next week what my vitamin D level is and then I will supplement from there. I didn’t realise that vitamin D was so important. I have never had it checked before by my GP even when he has checked my thyroid levels each year. I didn’t know it was linked to my thyroid. Even the 2 endocrinologists haven’t explained the importance of it, they just told me not to be concerned by the antibodies! What I am worried about is that my GP doesn’t seem to think that how ill I have been is to do with the high iron serum level but it must be as I have never had all these symptoms before and never been so ill before, bone pain, dihorrea, loss of appetite, not able to stand for long. I know its that as week by week I am starting to feel better but I am concerned as to how long it will last. He says it will be out of my system within 12 weeks and he can’t do anything to speed it up. I was on prescribed ferrous sulphate tablets 200mg (65mg ferrous iron) 3 times a day. The problem is I have heavy periods with clots and that needs addressing but he wont do that yet. He cant tell me why my ferritin only went up to 40 (10-300) yet my iron serum went so high and transferrin saturation. Do you now if there is something wrong with me? if my GP and the two endocrinologists cant tell me then who can I go to? I have had more information off this site than all of them. I keep asking why have I got a goitre and how do I bring the antibodies down but they say they don’t know and its just one of those things. I’m going to take my health into my own hands and get my vitamin D levels up, thank you for the advice, I really appreciate it, Many thanks, Jenny

    Answered by  jennmbell96354600 on

  • IAW
    Participant
     IAW on

    Jenny the whole world does not know how important Vitamin D is. Scientists and doctors thought it was only good for bone health and it does so much more. It turns “genes off and on”. So when someone says “it must be a defect in their genes”, it can also mean that their Vitamin D levels are so low that their genes cannot function properly because of it. (Autism has now been linked to low Vitamin D levels. So low levels in pregnancy and beyond are not good.) This information though, is slow to make it to the medical professionals. It is why this organization and several others are working to correct the problem. (Part of the problem is also government bureaucracy.)
    I really do not think that the iron over load is permanent and it will right itself. I get the impression, by a little research that unless the poisoning is so bad that you are dying, do they then take drastic measures. You could ask your doctor about two things. Could you take an herbal treatment like one of those listed at please see http://www.livestrong.com/article/282927-herbal-remedies-for-iron-toxicity/. Could you donate blood because that will lower iron levels.
    You said “I have heavy periods with clots”, that will also probably correct itself once your Vitamin D levels are high enough.
    Your welcome!

    Answered by  IAW on

  • jennmbell96354600
    Participant
     jennmbell96354600 on

    Hi. Thank you for your reply again.I asked my GP if I could take blood and he says no I won’t be able to as its not severe enough. I double checked and phoned our blood donation service and they wouldn’t let me either. I will look into taking one of those herbal remedies and see if that helps. I will definately get my vitamin d levels up especially as it may help my periods and my thyroid and health altogether. Thank you for all your advice. I feel more in control of things now. I will let you know how I progress. Many thanks, Jenny

    Answered by  jennmbell96354600 on