Iron & Vitamin D - Desperate Plea for Advice

Hi I was wandering if anybody could help me please, I'm feeling so poorly. I found out in November that I was anaemic; serum ferritin - 6ng/mL (10-300). Also I found out I had low vitamin D, 19.

I started on Ferrous Sulphate 3 times a day, but I could only tolerate 2 a day. I have had terrible stomach pains on this and it seemed to be getting worse not better and I feel constipated all the time then about 6am in the morning I have severe diohrea. Last week my GP switched these to ferrous gluconate in the hope that they wont cause as bad stomach pains, but they are just as bad and now I'm heaving every morning.

I have heavy periods with blood clots which my GP thinks is causing the anaemia. I also have raised thyroid antibodies but within range thyroid hormones and TSH.

For the low vitamin D I was prescribed 10 000u twice a week but then they upped it to 20 000u. Since it was increased 3 weeks ago I have started with all these pains in my bones, arms, ribs, under the arm pits, weaker legs and generally feeling weaker.

I have had 5 viruses since December so my GP thought I had post viral fatigue but now I think I realise that its the side effects of the iron and vitamin D tablets. All I want to do is lie on the settee and it takes me 2 hours to get out of bed.

I used to swim three times a week and now I can only walk for 10 minutes very slowly. I feel like I have aged 50 years. I'm only 36.

I have been off work for 6 weeks and now I'm struggling to do a phased return. I never usually have any time off work. I'm so tired and weak. I have lost 10 pounds in weight in the last 6 weeks and I don't have any appetite. I'm now only 8 stone 4 pounds and I can't afford to lose anymore weight. I felt better when I was anaemic than I do now with all these symptoms. I don't seem to be getting any better. I'm also feeling very depressed, panicked and anxious.

Does anybody know if Spartone will increase my iron levels without all the pain.

And will a lower vitamin D level cause me less side effects? Or do I just have to grit all the pain and fatigue and carry on with the iron tablets and 20 000u vitamin D until my levels have increased? (not sure I can bear it). Will these symptoms go in time?

Can anybody offer me any advice please? I really appreciate it,

Many thanks

Jenny

90 Replies

oldestnewest
  • Some people cannot tolerate vitd supplements in any form or at any dose, you may be one of them.

    Have you had your calcium level checked ? on a high dose of vitd you need to make sure calcium isn't high as vitd will push it higher and cause problems.

    Can't really help with iron, all I know is that I can't take that either, I get by with low levels of everything, no choice. I have tried Spatone but no idea if it helped raise levels or not.

  • Hi bantam 12 thank you for the advice.

    my serum calcium was 2.25 (2.20 - 2.60

    my serum adjusted calcium conc was 2.28 (2.2-2.6)

    I think that you may be right about the Vitamin D, I noticed the pains and lack of appetite even on the lower dose and its just got worse as the dose increased.

    I will see what the doctor suggests,

    many thanks

    Jenny

  • I use Solgar Gentle Iron as I found Ferrous sulphate made me constipated. I also take Solgar Magnesium Citrate now and don't suffer with bloating or constipation at all. Could you not go back to the 10,00 Vit D if that didn't cause any problems? Will take longer to raise but better than suffering.

  • Like has already been said, ask for calcium to be checked too x

  • I will have a look at the Solgar Gentle Iron, thank you for that. I will see what the Doctor suggests about the Vitamin D but I cant cope with the pains and fatigue, many thanks, Jenny

  • I totally understand. I have felt terrible these last few weeks..painful joints, particularly my elbows, sore muscles and super tired again. With me though it's due to being Vitamin D deficient, I have only been taking supplements for a few days, and also I think due to levo. I have some Thiroyd winging it's way here as we speak so hoping I will start to see improvements soon. Good luck, let us know how you get on x

  • Thanks NatChap. I am going to my Doctors this morning so I will see what he suggests. yes I will let you know how I get on. I think this site is amazing for support, I really appreciate it.

    Many thanks

    Jenny

  • Hi NatChap. I have been back to my doctors about all the pain from the iron and vitamin D so he has said to stop taking it and get some liquid iron. I have ordered drops from from Biocare.

    My GP seemed to think that the symptoms I was experiencing were from the iron and not the vitamin D but I think that it was from both. I rang NHS direct and they said that the pains in my arms and everywhere else and lack of appetite were likely to be due to the vitamin D dose being too high. Anyway I am feeling a bit better since I stopped taking booth of them on Saturday. I now feel like somehow it was poisoning my system and making me more fatigued. I have never felt so ill before. Losing ten pounds in weight when I was only 9 stone to begin with is not normal in two months.

    Anyway I am going to see Dr Peatfield this afternoon to see if he can help me in anyway. He has said to me last year that I may benefit from a small dose of thyroxine but my GP says his hands are tied as he cant prescribe. Anyway at least I haven't got the pains but I am still left with this weakness which I hope will go soon and I hope that the fatigue will go. I'm used to being tired but nothing like this. Hope you get on ok also.

    many thanks Jenny

  • It will be interesting to hear what Dr Peatfield says. Maybe wait until you are feeling better and your iron levels are up and then try Vit D again but at a lower dose, that way if you start to feel ill again you will know it's definitely that. This is a problem that I find, I am taking so many different vits and minerals and am either too impatient to wait before adding something else to my 'regime' or it is a vit or mineral that needs something else to make it work so you end up not knowing what is helping and what isn't. It's such a minefield!! The doctors are no help as they don't study complimentary medecine and often give the wrong advice. I was told that there were no interactions between levothyroxine and iron for example. Anyway, hope you keep feeling better and find a doctor who is more helpful!! xx

  • I will try it too. I was disgnosed as mildly anaemic, though nothing was done about but have lots of sumptoms. Also noticed that on my test results my VitB12 was noted as low, but the endo said it was within range so it was ok, though the test result said action needed on both. I have problems with my gut and cant tolerste the pain from tsking ferrous sulphate.

  • Hi Mrs Raven, there is so much inconsistency, I'm finding that this site is of more use to me than any Doctor or Consultant. Have you managed to raise your iron levels with something else?

  • It might be worth asking your doctor if you can have an iron infusion. That's very low indeed - no wonder you feel so poorly.

    But anaemia causes heavy periods, not the other way around - your doctor has got cause and effect mixed up. So that makes me wonder why you're ferritin deficient - do you have any gut problems that you know of? The word "veggie" in your user name seems to be a clue to what you eat - are you the sort of veggie that eats vegetables? :) Forgive me for asking, but so many veggies seem to live on bread, pasta and cheese...

    If you do eat a lot of bread and pasta, it might be that you're gluten intolerant.

  • Hi. An iron nfusion sounds like a better plan. I'm vegetarian and yes I do eat a lot of pasta and veggies. I've just got some gluten free pasta. I don't eat dairy products whole. I have almond milk instead. I think I do have gut issues as I'm thin but with a sticking out stomach and it gets worse when I eat. It's hard for me to be gluten free as well as veggie but maybe I need to give it a go. I don't really eat bread though.

    Do you know why I could be ferritin deficient. I eat lots of nuts and seeds, spinach, broccoli, cabbage, spiralina etc maybe its not enough,

  • Spinach prevents the body from taking up iron, as do dried apricots. Nuts can cause problems because of the phytic acid. My ferritin deficiency seems to be a result of insufficient vitamin C and I went up from 15 to 34 in just a few weeks after supplementing vitamin C, so that might be worth trying.

    Also, I'm vegan and gluten free and now that I'm used to it I enjoy it.

  • Hi thyr01d I didn't realise that about spinach and apricots. I eat spinach most days. What foods do you suggest that I eat to get more iron? I'm taking vitamin C, many thanks Jenny

  • The muscle weakness probably comes from the vitamin D as it's a well-known side-effect. I'm like bantam, I cannot tolerate it. It doesn't give me energy, it removes it and I suffered from terrible muscle weakness while taking it. Vit. D takes a long time to leave your body as it is stored. Even if you stop it today, you could suffer from muscle weakness for weeks.

    Your should stop vitamin D and have your calcium checked. It may be way too high.

    I don't know what the doctors think when they prescribe such huge amounts of vitamin D, that's insane.

  • Hi Nathalie, thank you for your reply. I have taken my last dose of 20 000 on Saturday and I'm not taking it again. The pains are going down slowly. I have absolutely no appetite. I'm seeing my Doctor later this morning so I will see what he suggests and see if he will check my calcium levels and retest the vitamin D. Can I ask how did you manage to get your vitamin D levels up? or did you just leave them low?

    many thanks

    Jenny

  • Hi Jenny-veggie. I have had iron-deficiency anaemia on and off since my teens (I am now in my forties), and also used to get very heavy bleeds. I can tolerate ferrous sulphate, but I also tried ferrous fumerate (which is available either as tablets, or 'Galfer Syrup' which has a higher level of iron - ask your pharmacist). I also tried SpaTone and that also helped, plus Floradix although the iron levels are quite low in that. There are also 'food state' iron tablets available, where the iron is better absorbed and supposed to not cause constipation: 'Nature's Own' is one brand worth looking into. They do a 'food state' iron, which includes the Vitamin C which helps the body absorb the iron. natures-own.co.uk/Iron-Moly... They also do a 'wholefood' iron one too.

    I am due a blood test soon although even when in normal range my iron level is at the lower end. So I am always on the look out for better ways to increase my iron. I recently discovered 'iron fish' - see the website link below. I've ordered one but havent tried it yet but will give it a go and let you know how it goes. See article below:

    slate.com/blogs/the_eye/201...

    The website is here:

    luckyironfish.com/shop

    With regard to the heavy bleeds, I saw a gynaecologist a few years ago and it was caused by endometriosis plus hyperplasia of my womb, which seemed to be due to hormone imbalance of low progesterone in my case. It may be worth seeing a gynaecologist if you can, or at the very least ask your GP to get your estrogen / progesterone levels checked if he hasn't already. I also went to see a herbalist, and she put me on several herbal tinctures and teas, which helped rebalance my hormone levels.

    I hope some of this helps you in some way.

    Good luck and hope you feel better soon.

  • Hi Auria, thank you for all the information, I will have a look at all the options that you have suggested regarding the different types of iron. I'm seeing my GP later today and I'm going to ask him to refer me to a gynaecologist. He hasn't checked my oestrogen and progesterone levels. I'm going to see a herbalist in 2 weeks, so that sounds like a good idea. Many thanks, Jenny

  • You are very welcome Jenny. Best of luck and hope it all works out for you. Let me know how it goes. :)

  • Hi Jenny,

    You may like to carefully consider an alternative view on the limitations of the standard "vit D" or calcidiol [25(OH)D] test:

    1] fearlessparent.org/suppleme...

    2] autoimmunityresearch.org/pr...

    Interestingly, this would explain:

    a) the existence of inflammation-causing, and/or autoimmune conditions, and

    b) iron levels being low ( - as an adaptation response; see p13 in 2] above).

    There's a lot there, so slow and steady (I suggest) while you consider this . . . . and you may also like to suspend the "vit D" and iron supplementation while you do so.

    I hope the above point to the most relevant and useful body of medical opinion for your issues ( - which as well validated as it appears, seems to have been completely over-looked by our UK medical profession ! Most strange . . . . "curiouser and curiouser" !).

    Best wishes,

    ;~)

  • Hi , I will read all the info on your links before I go to the Doctors later this morning, many thanks for the information, Jenny

  • Wondered how it went/is going, vegetarian Jen ? ? ?

    ;~)x

  • Hi thanks for your message. I stopped taking the vitamin d3 and the iron 2 weeks ago and all the pains and aches have gone thank goodness. However I'm feeling very tired and quite low and I'm wandering when I will get my energy back. My GP Keeps saying its post viral fatigue but not ME. I've had really bad dihorrea first thing every morning. I thought it would have stopped by now but it hasn't yet! I've got some vitamin  d3 drops, 1000iu so I'm going to try one drop a day and see how I get on. I'm waking between 3am and 5am each morning and am hoping that improves soon. How are you doing? Thank you for your concern. Jenny 

  • Dear vegetarian Jen,

    You "stopped taking the vitamin d3 and the iron 2 weeks ago and all the pains and aches have gone thank goodness." 

    WOOOOWW ! ! !  So, interesting to have that feedback ! ! !  And pleased for YOU, too ! ! ! ;~))x

    Repeat: You STOPPED . . . . . AND "all the pains and aches have gone thank goodness." 

    WOOOOW ! ! ! 

    Similar evidence has been accumulating for OVER a decade now for (at least one sub-group of) people seemingly suffering from chronic inflammation type conditions ( - which may not even be diagnosed correctly in many cases).

    Sorry to read you're continuing to have other issues, BUT I personally doubt if they can be resolved with LOWER doses of prohormone "vit D".  Your experiment, if you still want to do it, may confirm or refute this - BUT do bear in mind that a "temporary palliative effect" has been observed and reported !  A sound biochemical explanation for this has been proposed, which seems to make sense, too !

    I continue to investigate the issue of chronic inflammation-causing illnesses being associated with "vitD/VDR dysfunction" as in the cited paper . . . . . a viewpoint, which whilst WELL understood and DOCUMENTED for over a DECADE now, remains unrecognised in UK medicine ( - to the detriment of many, I fear !).

    And what "vitD" test results do you have ?

    Thanks for your IMPORTANT and notable feedback ! ! !

    Take care,

    ;~))x

  • It was definately inflammation that I had, it was in my bones especially my left arm, shoulder, neck and terrible aching legs. When I felt the inflammation of my ribs then I realised it was the vitamin d3 20 000iu. I'm not certain I even have post viral fatigue, I think that I was intolerant to the iron and D3. The d3 made me feel very nauseous also. People kept telling me that I was lifeless. All I wanted to do was lie down as I felt so weighted. These symptoms have all gone now thank goodness and I think I am slowly getting back to how I was. 

    Do you know how I can get my vitamin d levels up. My bloods were tested in November and was 19. My gp asked for a retest in February but the payh lab turned it down and said they can only test every three months. So I have to wait til early May to have it repeated. I can let you know then what it is. Thank you for your support,  Jenny 

  • Dear Jenny,

    My support is free and a PLEASURE . . . . just hope the pointers I give turn out to be of benefit to YOU ! ! !  That's for you to decide with sufficient care and curiosity. 

    I am CLEARLY pointing you to info. which SAYS deciding to take "vit D" supplements (or sunbathe, say) is UNSOUND based on the CALCIDIOL ( - or 25(OH)D) test result ALONE:  YET the WHOLE of the UK medical profession is now INVOLVED in this folly, while knowing no better.  You and I now can KNOW better - the information is there in the PUBLIC DOMAIN.

    You can start, if you prefer with this (gentler) introduction to this IMPORTANT ( & widely MISUNDERSTOOD in the UK) issue with:

    fearlessparent.org/suppleme... - REALLY, I wouldn't worry AT ALL about the calcidiol level ALONE, as is being suggested (incorrectly) to you. 

    You're ON your WAY to finding a more appropriate explanation for your ongoing health issues: CONGRATULATIONS ! ! ! ;~))x

    One calm breathe and one calm step at a time, Jen !

    ;~))x

  • Here's another (more general) recent article raising concerns about the current ( - and perhaps rather "run-away) "vit D" supplementation fad, prompted in the UK (inappropriately) based on the calcidiol [25(OH)D] test alone:

    independent.co.uk/life-styl...

    This is by Tim Spector, Professor of Genetic Epidemiology, King's College, London in a January 2016 edition of The Independent.

    It fails to however point to the known "vitD/VDR dysfunction" detailed in the other two references I gave.

    ;~))x

  • Hi I've read both of your links and I can see what you mean about it causing inflammation. Will it have done any damage to me internally? Its only today that I have got my appetite back. I've lost 12 pounds, gained depression and have irritable bowl! but its all getting better. I felt better when I was anaemic and low in vitamin d. I told my doctor that I felt like I had been poisoned but he dismissed me and said I'm depressed. I wasn't depressed before I started taking them! many thanks Jenny

  • Clearly Jen, taking additional "vitD3" ( - from which the body readily makes calcidiol) is NOT helpful in an illness process in those cases where the body (in its wisdom) is trying to REDUCE those levels.

    This will, in the specific sub-group of similarly affected people ( - of which you seem to be one) work AGAINST the disease-coping process ( - under strain & unresolving already) and is likely to make things worse - says the cited opinions, with convincing data (as I see it !).

    As your increased, then reduced symptoms suggested, taking the "vit D" supplements under these (physiological) conditions makes the difficult job (of response to the illness) even harder - inadvertently working AGAINST what the body is trying to do.  And, stopping the unhelpful supplementation begins to once again REVERSE this introduced disadvantage, as calcidiol levels (eventually) begin to reduce to the point at which supplementation was started - this could take months OR longer, depending on how much calcidiol levels where raised by supplementation, and how much sun-exposure one is getting (which will tend to increase them again).  TRYING to raise them further, based on the calcidiol test result alone is UNSOUND ( as said) ( - at least because that tells us NOTHING of how high (or low) the calciTRIOL [ or 1,25(OH)2D] is).

    You could consider joining one of the number of (free) forums (like this one) which deal specifically with the "vitD/VDR dysfunction" issues (mainly US-based) . . . . and discuss the specifics there at greater length with those who are even more familiar with it - at least this way you can get a firmer confirmation of your current view (that you are likely to be suffering from a "Th1-type" inflammation illness, with a "vitD/VDR dysfunction" at its core).  There is one devised protocol to resolve this "dysfunction" as you will have already read. 

    Hope that's OK !

    ;~))x

  • Hi, you are far more intelligent than me. I do understand what you are saying though. I wont take the vitamin d3 even in a minor dose and yes I'm likely to have some sort of inflammatory problem. Can my GP tests me as to why I cant take to vitamin d3? are you a doctor or researcher? many thanks, Jenny

  • What are your B12 levels - have scanned earlier posts and cannot see a result :-)

  • Hi Marz, thank you for replying to me again. My B12 was tested in November and it was 362 (200 - 900). I've started taking b12 Boost oral spray as I cant cope with anything heavier on my stomach. Do you think that this is an adequate source of b12?

    Many thanks

    Jenny?

  • You need the equivalent of 5000 mcg of B12 to raise your levels. Do you have stomach issues ? Could it be LOW acid ?

  • Hi Marz, I do have a bloated stomach but how would I know if I have low acid? My GP doesn't seem to want to investigate anything.

  • us2.campaign-archive2.com/?...

    Scroll down through the article to find the test :-) There is so much we have to search and find out for ourselves. There are many more articles with similar information - I just chose this one !

  • Vit k2 should b taken with such a high dose of vit d else u will get joint pains. This is important . Also i had a small procedure in hospital for heavy periods and it did the trick with my anaemia

  • Hi thyroidnodules thank you for your advice . Why dont GPs give advice like taking vitamin k2 with vitamin d. I don't think I can take it again. I've gone from being an energetic person (always tired but still energetic) to being so slow and I'll and depressed. My GP keeps saying we are monitoring my periods. But I've never had even an examination.

    He seems to put everything down to mental health. But i wasn't depressed when before I started in the iron and vitamin d.

  • A lot of people find that their aches and pains get worse initially when on Vitamin D supplements - it's the body's way of telling you that it's healing - with your levels as low as they were, I can't say that I'm surprised you've been suffering while you're healing. I had the same problem initially but it settled. Taking K2 may also help. D3 and K2 should be taken separately from your iron supplement.

    I can vouch for Spatone increasing iron levels - I've been using it to raise my ferritin levels while I've been taking high dose B12 and it works and doesn't upset my stomach. You may also think about taking vitamin C with it to aid absorption and help with constipation.

    I'm guessing from your name that you're vegetarian? Have you had your B12 levels checked as Marz has suggested? If your B12 is low, this could be contributing to all the symptoms you're having as well.

  • Hi, thank you for your advice. My B12 was tested in November and it was 362 (200 - 900). My GP and an endocrine consultant said this was very good! Obviously its not so I have started taking B12 Boost Oral Spray. The reason for a spray is I cant bear anything else upsetting my stomach.

    I was taking vitamin C with the ferrous sulphate but it didn't seem to help. I'm going to my GP later this morning so I will see what he suggests.

    The vitamin D3 20 000, leaves me in agony and feeling very weighted and I just lie there. I cant cope with it anymore and I cant afford to lose anymore weight and I feel so depressed and keep crying and that's the worst of it. Its making me severely depressed. Can i ask you if you felt like that? I'm wandering whether to get biocare vitamin drops and just take one drop every other day, so it would be a very low dose, but maybe I could tolerate that.

    I'm even starting to think that I need antidepressants but what's hard is that the anxiety and depression has come on since I've been on the iron and vitamin D.

    I'm giving my body a few days off and then I will go onto the spatone, many thanks for your support, Jenny

  • I haven't experienced those symptoms with D3 but I've come across people who've had a bad reaction to fillers in some of the supplements. If it helps, I use Doctor's Best D3 supplements - they have no nasties in them. You can get them in 1000IU as well as 5000IU.

    The anxiety is probably down to your low B12. I didn't realise how bad my anxiety had become until I raised my B12 levels - I started at 376 and used to worry about everything. And I mean *everything* - it was ridiculous. Now I'm much more chilled. Telling you that 362 is "good" makes me want to take a baseball bat to someone's head. You can also get methylcobalamin liquid drops which may work out cheaper than the BetterYou spray as I know from experience that a decent amount of that ends up costing some serious money. I now self inject B12 and find that's much easier (for me at least).

    You may also want to think about magnesium as you're quite probably low in that too. Epsom salt baths have helped me tremendously with joint pain when it flared up.

  • Hello Hunny59, Please don't think I'm being rude but I'm a little concerned that you have stated as if factual that the aches and pains are the body's way of telling you it's healing. While it might sometimes be true that aches and pains indicate healing, the opposite can also be true and I think this should be considered carefully.

    We are not medics and without examination cannot possibly reassure someone that their aches and pains are not a bad thing.

    No offence intended, I'm just worried because your writing style is authoritative and many people my rely on your word.

  • Sorry thyr01d. It certainly wasn't meant that way. My fault for bashing out a reply when at work. I'll re-read posts in future to make sure they don't sound too authoritative. Point taken and duly noted.

  • Dear hunny59 thanks for your lovely reply, there really isn't any need to apologise, like everyone else on here you are kindly helping us all.

  • why don't you try taking your vit d in a 5000spray and take a vit k2 tablet with it. also your b12 is low - I take vit b12 in a 24 hour patch every five days if you take too much vit d3 the excess calcium calcifies in your tissues. the k2 vit directs all the calcium to your bones. also if you can get in the sun as much as possible as that is a more natural form of vit d. a healthy person's b12 is around 900 so yours is low . I sent away for a vid d nhs test and was told that the bottom range is 75 and anything lower is deficient. hope you feel better soon

  • Hi thyroidnodules, thank you for the advice. I am going to wait a while and then try a liquid version. I can see from all the advice on here that I need to get my vitamin b12 up. I will get some vitamin k2. Thank you for your advice.

  • Hi can I ask. If I go on holiday abroad in May for a week and get in the sun as much as possible will this bring my vitamin D levels up to normal range and store it there? or will it gradually reduce when I come back home?

    many thanks

    Jenny

  • You can absorb up to 1000IU a day from the sun - your body has a shut down mechanism when it's absorbed that much. It should bring your vitamin D levels up nicely but yes - they will drop when you come back home if you don't get out in the sun or supplement.

  • Hi I went to my Doctors on Tuesday as the pains in my bones got worse and he says that all the symptoms, pain in bones, no appetite, diohrea etc will be due to the ferrous sulphate and also ferrous gluconate iron tablets that I have been taking. He thinks I have either got too much iron built up in my system or I am intolerant to it.

    He has told me to stop taking the iron and to just buy an iron tablet from the chemist with vitamins. I'm never taking either of these again.

    He really doesn't think that any of the symptoms will be due to the vitamin D3 20 000u. And he wants me to continue with it. However I was in such agony that I rang NHS direct and they said that the Vitamin D being such a high dose would be causing those symptoms.

    I haven't taken any iron or vitamin D since Saturday and all the pain has gone, I still have diohrea and weakness but it is improving very slowly. I have ordered some drops from Biocare of iron and vitamin d and I can use them to build it up and see if I can tolerate it. they such helpful advice and they also said that what I was experiencing was extreme side effects of taking vitamin D and Iron, overload or intolerance.

    My GP also doesn't want to do anything yet about the blood clots that I am having on my period, he wants me to monitor it and go back in a month.

    My GP is lovely and is very supportive but he has got me down as mental health, I'm sure he has. I did have very bad depression and anxiety when my dad died and he prescribed me mirtazapine which took me 9 months to get off it. He hasn't suggested antidepressants this time. But I know that its not depression. I feel somehow that my body has been poisoned and that its easing off now, fingers crossed. I'm still so weak and fatigued.

    I am going to see Dr Peatfield Late this afternoon to see if he can shed some light on things,

    Many thanks for your support,

    Jenny

  • The answer depends upon many factors, your current D levels, the strength of the sun, how long you spend out in it and what you are wearing.

  • Hi will everyone who has replied to my initial post get this email or will it just go to the last person in he thread?

    Hi Everyone, I have just come back from the Doctors and he says that all the symptoms, pain in bones, no appetite, diohrea etc will be due to the ferrous sulphate and also ferrous gluconate iron tablets that I have been taking. He thinks I have either got too much iron built up in my system or I am intolerant to it.

    He has told me to stop taking the iron and to just buy an iron tablet from the chemist with vitamins. I'm never taking either of these again.

    He really doesn't think that any of the symptoms will be due to the vitamin D3 20 000u. And he wants me to continue with it.

    I'm not so sure. I don't feel the D3. If I take anything then I want it to be liquid instead as my stomach is so sore.

    He also doesn't want to do anything yet about the blood clots that I am having on my period, he wants me to monitor it and go back in a month.

    My GP is lovely and is very supportive but he has got me down as mental health, I'm sure he has. I did have very bad depression and anxiety when my dad died and he prescribed me mirtazapine which took me 9 months to get off it. He hasn't suggested antidepressants this time.

    I will have to have a good think about what to do,

    Many thanks

    Jenny

  • No sadly your reply above will not go to everyone. I just spotted it when I was reading through after your last reply. I'm with hunny59 and her comment about B12. Low B12 can mimic the symptoms of being Hypo....

    b12deficiency.info/signs-an...

    Please read the above link and learn everything there is to know about B12. Also to realise how wrong both your Doc and Endo are when they say your B12 is fine. Anything under 500 will present with neurological symptoms. In Japan the range STARTS at 500. Also only 20% of your result reaches the cells where it is needed - so that makes your result even worse. It is a diabolical scandal that you are being left to suffer in this way. Docs do not study vitamins at medical school. The post below is a 4 minute video from a GP - explaining the problem.....

    anhinternational.org/2015/1...

  • Hi. Thank you for the info. I've just got to go to an appointment but will look at it when I'm back and then will send the reply that I posted just to everyone. I think I had best get some stronger b12 as I'm so tired.

  • Thanks Marz, I'm just having a read of all this info now,

    Many thanks Jenny

  • Hi Marz, I'm going to see Dr Peatfield this afternoon to see if he can offer me any advice.

    I am getting muddled with who I have said what to on this forum as all my messages seem to be mixed up.

    The pain that I had all in my bones has all gone and I have stopped taking the iron and vitamin D on Saturday. I still have weakness and terrible fatigue and diohrea but at least the pains have gone. Also I managed half a day at work yesterday. They thought that I was quite a bit better than last week when they said I seemed lifeless and drugged. I had thought that I was never going to be able to work again but work have been so supported as I never normally have time off sick and they are letting me do a very gradual return.

    I know that I am not well and if I cant tolerate iron and vitamin d then there must be a problem with me. I felt better when I was anaemic.

    I have put an order in with Biocare and they told me how to trial their liquid drops of D3, iron b12 zinc and selenium. So fingers crossed that works. And hopefully Dr Peatfield will be of some help also.

    Many thanks for your advice,

    Jenny

  • I was deficient in vitamin D and low in B12.

    When I started on prescribed vitamin D, I felt worse than ever for many weeks before I noticed the pain lifting. I was given B12 injections too and, again, I felt worse before I felt better.

    Someone explained it to me that my body was adjusting to getting what it had needed for so long.

  • Hi BeansMummy, can you tell me how bad the pain was? One minute I can get up and about and the next I feel bed bound, like I just cant get up off the setee? Is that how you felt? many thanks Jenny

  • So sorry that I haven’t answered, Jenny, I’m not getting notifications from HU for anything so hadn’t seen your question.

    It was deep, deep pain as if it was actually in my bones, and it was in my hands (even my fingers), arms, feet and legs; it was such an awful, deep, constant ache. Painkillers didn’t make any difference, and it stopped me sleeping at night. That pain got worse once I was on supplements, it took a few weeks to ease off. I tested deficient again recently (despite being on supplements), but I already knew because the pain was getting pretty bad again.

  • hiya, i've only had the bone pain since I started taking the 20 0000 vitamin D from the doctors. Its the worst pain that I have ever had and I had these strange surges also. I haven't taken the iron or vitamin D since Saturday and the pain is nearly gone. I still feel very weak though. I have ordered some drops from biocare and they are very gentle and I can build up with them.

    Have they said why your vitamin D level is so low despite taking the supplements? many thanks Jenny

  • I was deficient in vitamin D, and very low in iron and B12. My GP and endocrinologist have been very dismissive of all of it really, and won’t accept that there can be any link with Hashimoto’s. It has been a continuing battle to get taken seriously – doctors don’t seem to understand how unwell you can feel with those deficiencies. When I was first prescribed vitamin D, I certainly wasn’t put on a high enough dose (was 800 IU daily, which was doubled a long time later when blood tests showed that I was still low). I am “lucky” that I get B12 injections.

    I’ve been seeing a private nutritionist recently, have had other tests done, and I am deficient or low in many nutrients. I appear to have practically no stomach acid, so don’t absorb anything effectively. I recently tested deficient yet again in vitamin D, but have sourced my own D3 with K2 (recommended by my nutritionist, who I trust more than any doctor). And yes, the pain has been horrendous – I am only 3 weeks into taking it, the pain has lessened but it is still bad.

    I am addressing the lack of stomach acid (am taking Betaine with my meals), have radically changed my diet, and take quite a few supplements. It is two steps forward and one step back, but I am slowly improving.

    I’m not sure what you mean by your “strange surges” though – I get what feels like a kind of deep vibration in my body and limbs, it is VERY uncomfortable. I don’t know what it is linked to specifically for me really, all the symptoms tend to overlap.

    I have no idea how we are supposed to be dosed on vitamin D, but I take mine daily – maybe taking a high dose twice a week is too much for your body to cope with? I honestly don’t know. Yours was so low though, and you do need to take something. Maybe your pharmacist could advise you on the best way to take something?

  • Hi sorry for the delay in replying. I started to feel a bit better yesterday and managed to do half a day at work but then felt dreadful again. (I'm starting a very part time phased return) I was energetic and fulltime up until I started with all these viruses and I have gone downhill since I have been on the vitamin D 20000 and the ferrous sulphate iron. I am getting better since I have stopped taking them last Saturday but I have still got the diohrea and heaving and lack of appetite and weakness but all the pains have gone so that is something. I'm going to see Dr Peatfield in Malvern later this afternoon to see what he suggests. I'm not sure how I'm going to get the energy to go but I am determined to as he is the only one that actually listens to me.

    Yes the strange surges are like vibrations, your description is more accurate than mine, I couldn't quite describe it, but the pain is unbearable. It felt like my body was poisoned. Yes I think that the

    20 0000 vitamin D is too much for my body. I have ordered some drops from Biocare and so I am going to start slowly, each drop is 10000 Vitamin D so I may just take one every other day to start with and then build up if I can tolerate it.

    I think that my low vitamin D is linked with my hashimotos. The consultant that I saw at a local private hospital didn't like me saything that the raised antibodies that I have were hashimotos disease. He just said that lots of women have them and its not a problem unless my thyroid hormones become out of range. He dismissed my symptoms. He was a waste of money apart from he's asked my doctor to retest my thyroid every 6 months so that is something.

    I just hope that Doctor Peatfield can shed some light on things,

    Thank you for your support, many thanks Jenny

  • The consultant you saw sounds like a waste of space.

    Good luck with your appointment :)

  • hi,

    I'm wondering why you haven't joined the anemia group as well (no offense by that) It seems like they might have additional advice for you, and as sad as it sounds, some doctors just don't have all the answers but a group of people with the same symptoms and illnesses have a lot more answers since they are forced to find them by themselves. I hope you get well, I wasn't aware vit D could cause some people to be sick, I guess you learn something every day, it sounds like that would be a good place to start, and looks like you already have stopped the D, I can relate to having energy on one day and then feeling like junk the next, life can be hard enough without adding pain and other body illness to it. just for the heck of it, have you had a TSH test done? although you say you are underweight which doesn't seem like it would be hypo but it could be a thyroid condition.

  • Hi arugala, I will join the anaemia group. My TSH and thyroid hormones were all within range but I have raised thyroid antibodies. I'm pretty certain that all this pain and fatigue I'm suffering is due to the iron supplements and or vitamin D3. Thank you for the info, Jenny

  • How about Ferrous Fumarate Syrup? I think it's much easier on the stomach, even though it's so sweet it's hard to swallow, but you do get used to that. I am prescribed 140g/5ml strength for low ferritin (non prescription is insufficient, according to gp).

  • Hi Jenny so sorry to hear you are so unwell..............let's see if we can help somehow. First of all if you take something to make you fell better and it doesn't stop taking it immediately as doing more harm than good - just because it says on the bottle......................we are all different and have different 'carrier' problems for these supplements. I know I have drawers full of things I have tried and given up on. I found a new type of iron that is gentle on the stomach and does not give constipation - so might be worth a try here is the link to the company who makes it for the data on it ................let me know if you are interested in buying and I will send you a link where to get it. albionferrochel.com/

    Now the D used to do the same to me............D pushes calcium around the body so might be you need some magnesium as a carrier. Are you on thyroid medication?

    Here is a bit I found on net "Can vitamin D supplements make you sick?

    I was recently started taking vitamin D supplements because my lab results showed my levels of this vitamin were low. Within a couple of weeks I started feeling awful: nausea, upset stomach, dizziness, short of breath, shin pain, generalized pain, and problems with my GERD.

    After perusing some medical journals, these symptoms seem to be consistent with hypercalcemia. "

    Mandy now (this just means as I have said too much calcium and your body does not like it or want it. So I would say magnesium is the answer to dilute the calcium and put it where the body needs it - as at the moment it is pooling where it shouldnt be. I am not a Dr but have researched nutritional issues for over 50 years - so if you want to try any of this let me know and I will let you know some goods products to use.

    Good luck Mandy

  • Hi Mandy, the way that you have described Can vitamin D supplements make you sick? is exactly how I feel. However I saw my GP today and he says its the iron that is doing it and not the vitamin D. So how can I find out the cause? He has just told me to stop the iron and try a multivitamin with iron in. He wants me to continue with the vitamin D but I am scared to do so. I have felt much better today but now I'm having this strange surging sensation and the pains are coming, its like I'm being flooded with something strange. I don't know what to do to make it stop. If you don't mind emailing me any links to products that you think may help then that would be great thank you

  • Jennie_veggie, you could stop the iron supplement for a couple of weeks and see whether symptoms improve. If symptoms improve try alternative brands.

    Alternatively, the Cambodian Iron Fish may be helpful healthunlocked.com/thyroidu...

  • Hii - there are products such as Vitamin D drops that you can add yourself to a glass of water i.e.not take a tablet that has a certain amount in it..............Bio care do Vitamin D Drops - one drip is 1,000 iu's (which isnt much) and if you can tolerate 1 drop you could build up to what you think you can tolerate. The iron I was suggesting (did you read the research on their product) is a patented iron product that is very mild but gets the iron levels up very quickly and without stomach upset and constipation.

    See below for info:

    Vitamin D is LIKELY SAFE when taken by mouth or given as a shot into the muscle in recommended amounts. Most people do not commonly experience side effects with vitamin D, unless too much is taken. Some side effects of taking too much vitamin D include weakness, fatigue, sleepiness, headache, loss of appetite, dry mouth, metallic taste, nausea, vomiting, and others.

    Actually Bio Care do Iron drops as well - so you could try them as well. You can control drops............taking a supplement is a hit and miss affair if your body doesn't want that amount.

    Taking vitamin D for long periods of time in doses higher than 4000 units daily is POSSIBLY UNSAFE and may cause excessively high levels of calcium in the blood. However, much higher doses are often needed for the short-term treatment of vitamin D deficiency. This type of treatment should be done under the supervision of a healthcare provider.

    So all it is ................is that you are taking too much for your body to cope with at the moment ................I strongly recommend. magnesium as well.......................

  • Hi thank you for the info. I have seen biocares range of liquid vitamins so I'm going to order the vitamin D drops. I will get some magnesium also. I'm not sure about the iron. Which do you think is the best?

    Going back to the vitamin D that I was on, I have taken 10 000 for4 months then 20 000 for a month. I think its all far too strong for me. I've had allergic reactions to vitamins in the past, where all my joints come out in aa severe burning rash. However this is different, as its mainly internal but I do have a very faint dotted line rash that comes and goes on my left arm,

    but I'm not sure what that is.

    many thanks for your advice,

    Jenny

  • Hi sorry about 'running' off last night - Bio Care do Iron drops as well - which means YOU can control what you take and introduce gradually. The rash is probably due to the calcium drawing down into the body without the support of magnesium to place it correctly throughout the body. Vitamin D has an affect on the kidneys so you may have a rash due to that but no harm will have been done.

    Bio care are about to introduce Magnesium drops. I will check today and see if they are available yet. Unfortunately these 'professional' products (Bio Care) are expensive but in your case I think will be helpful.

    I am not a medically trained individual any suggestions I offer are just that.................

  • Hi, thank you for all your advice. I think Bio Care drops are the best option for me and I don't mind the cost. I will pay anything to get better, many thanks jenny

  • Hi Jenny will check re magnesium drops today and get back to you.

  • Hjust off top bed will reply tomorrow ........night night

  • Hi Jenny I have just phoned Bio Care and there is a delay on the Magnesium drops coming onto their catalogue of products - I will let you know when they come on. Are you able to get thyroid results from your GP so we can see what your levels are - it may be low thyroid causing you to feel so rotten. OR were you OK before the Iron and D?

  • Hi thank you so much for doing that. I have just rang biocare and they have recommended vitamin d3 drops and iron epa and some b12 drops. They were so knowledgeable. They were pretty certain that my symptoms were side effects of the doses of iron and vitamin d being so high and not easily absorbable. I will dig out my thyroid results and post them in a reply shortly. Many thanks for your help, Jenny

    .

  • Hi Jenny tht's great - yes they are a company that was once for Professional use only - i.e. nutritionists and Drs. So their products are top of the range for sick people with deficiencies and also their staff are on hand for advice too.

  • Hi posthinking01, this is the post that I put on this forum about a month ago,

    Hi I was wandering if anybody can help me please. I have a multinodular goiter which my GP spotted about 6 years ago (none cancerous) but the nodules have increased with time (I have an ultrasound every 2 years). I have found out recently that I am anaemic and have low vitamin D, which I am now on supplements for. My GP says that I have normal T3 (5.2) and T4 (14) and TSH (1.11). But he says that I do have TP0 antibodies 282 iu/ml which it sates on my blood test results that 'this supports a diagnosis of autoimmune thyroid disease, possibly hypothyroid'.

    My GP has said that there is nothing wrong with the functioning of my thyroid and has said that it is just enlarged. However I have all the symptoms of an underactive thyroid, cold, weakness, fatigue, thinning hair, rounded face, clotting on periods, bloated stomach, memory loss/muddle.

    I was a very energetic person and was very enthusiastic but I have slowed down over the last 18 months. I have had 7 viruses in the last year and I have managed to push through them and carry on working etc but the last one I had to come home from work 4 weeks ago and I can't get back to my usual self, I have no energy and just lie on the settee most of the time. My GP says its anxiety and post viral fatigue / ME. I pushed my GP into referring me to see an endocrine specialist which I will see net week. Can anybody offer me any advice or help me understand what is going on with my thyroid please? many thanks, Jenny

  • Hi Jenny - I am not a Dr and this is just a suggestionn - but I would not accept what the GP has said but 'demand' to see an endocrinologist - I would actually tell him you are feeling so rough it might mean you losing your job and the consequences of that far outweigh his interest in keeping you as a thyroid patient without referral on. Unfortunately it is in a GP's interest to keep you under his care....................

  • Hi posthinking, sorry for the delay in replying. I have paid to see an endocrinologist on the 18th February and he dismissed all my symptoms and said my tiredness coldness etc were not hypothyroid symptoms. He has however asked my GP to test my thyroid levels every six months and keep an eye on the antibodies so at least that is something. He basically said that lots of women have thyroid antibodies and its not a problem. However he was the one that increased my vitamin D to 20 0000 and said that the reason why I am so tired as its too low. However since then I've gone more fatigued with all this pain lack of appetite and weakness and diohrea. its not normal for me to go from 9 stone to 8 stone 4 in 2 months.

    What I am doing is going to see Dr Peatfield today in Malvern. God knows how I am going to get there but I am determined to go, its late afternoon. He is the only one that actually listens to me. I saw him last year and he advised me on things for adrenal support. And he thought that if I could get a bit of thyroxine off my GP it would help me. However my GP said even though a bit of thyroxine may help me that he couldn't prescribe due to guidelines. I could just about manage last year despite being tired al the time and cold but since I started taking the iron and vitamin D I feel absolutely dreadful, now I'm off it I can see that my body felt like it was being poisoned somehow.

    I don't think I have post viral fatigue, I think I have an intolerance to iron and vitamin D that has made me feel so dreadful.

    Anyway I will stop moaning now. I really appreciate your advice. And thank you for telling me about Biocare. My package from them should be arriving today,

    many thanks

    Jenny

  • Hi Jenny, As per usual endo's not looking to the bigger picture. You dont have an intolerance to Iron and D as such - in my opinionn - you have a slow metabolism (low thyroid probably) and this is 'keeping' the product in your body for too long - sorry hope that makes sense. I had exactly the same - I used to itch all over when I took any supplements because my liver and gall bladder were compromised for same reasons. Good luck today let me know how you get on.

  • Hiya, thank you. Yes I think you are right as I could feel it all building in my system. . Yes I will let you know how i get on. Your knowledge is amazing. you would be better being a thyroid specialist! I have got more help off this site than I have had off any medical person. many thanks Jenny

  • Hi Jenny glad to help - I have Lupus and Hashi's and adrenal insufficiency - never felt well and at 19 started researching how to feel better - by supplements - little did I know my thyroid was running lowish - and I had terrible stress with my first husband who had a drink problem - 50 years later and with a new man for the past 16 years who is lovely - I am still researching and supply research to my Lupus Professor who says HE has learned a lot from the documents I give him - and most of them are thyroid related. The Lupus kicked off because for 15 years private or otherwise would not give me thyroid meds because my blood test was normal - but at the bottom of the range - I went from a size 10 ....8.5 stones to 16 stones in months had to give up my job at a famous airline - and nearly died - if I hadn't had the knowledge of vits and minerals to supplement as the body started to fail I wouldn't be here now.

    So glad it helped you too.................

  • Hi how do I private message you? Was going to tell you how I got on with Doctor Peatfield but wasn't sure if I am able to speak about him in a normal reply, its all positive, thanks Jenny

  • You click on the member's name (in blue) and then click on the [ Message ] button.

  • Hi jenny...not a doctor,and of course everyone reacts differently to medicine, herbs and or vitamins. I take 25 mg iron bisglycinate (non constipating)....when i remember or get very pale...ha! I take every 3 days because i am past menopause, i dont want to overtake iron, but also was slightly anemic years ago. Dont think i am now. But, i dont mess with iron as taking too much is not good. I take 4000 iu of vit d daily as my d is still very low, but i get by pretty good with that regime. I also take magnesium malate for pain in my arms and legs daily. I am considered sero negative, and low end. Maybe why i can do ok with just these vitamins and supplements. I still have occasional foggy brain, ear pain, bloodshot eyes and now trigger finger and pain in the bones of my hands and feet. I still have ibs. I take probiotics and digestive enzymes once and awhile. I am slightly hypothyroid even though tests come up ok.

    Hope you can figure something out. Sorry you are going through a rough time.

  • Hi Jenny,

    Let's try to pull you out of this hopefully.

    Iron- switch to iron bisglycinate - highly absorbed and in the small doses. Take 25 mg x 3 times a day - Options are: Pure Encapsulations optiferin-c; Solgar gentle iron, Thorne research ferrabsorb (this one is 36 mg) - you can take it twice a day or 3 times even with your current levels.

    Be patient with your ferritin levels you have a long way to go but you should begin to feel better and even your breathing will become easier after a couple of weeks.

    Take your iron away from milk, calcium, coffee and tea.

    Vitamin D - you need to top up your magnesium to be able to tolerate it. Take your vitamin D with your meal that has some fat content (eggs, butter, olive oil, coconut oil etc)

    Take your magnesium at night. Again magnesium as bisglycinate is the favourite for deficiency and a quick absorption and top-up.

    Start with 200 mg elemental per day and increase to 300 mg elemental magnesium per day after a few weeks.

    Every enzyme in your body needs magnesium and will fight over it until you have enough and adequate levels.

    As much as you are not able to swim but it is a good thing that you are away from swimming pools. The chlorine is one of the worst thing that you can subject your body too. It will compete with the little iodine you may have causing your thyroid to struggle.

    Take a good b-complex to help your new blood cells formulation and contains vital co-factors for your thyroid and other body function. It will help as well with your energy levels.

    As soon as you begin to feel you have your appetite and part of your energy back, you'll know that you are on the mend

    Are you on any thyroid medications?

    I hope this helps for now!

  • Hi Melanie, thank you for your advice.

    My blood tests in November 2015 were as follows,B12 was 362 pg/mL (200-900)

    Serum TSH level 0.58mU/L (0.1 - 5.0)

    Serum free T4 level 14 pmol/L (8-19)

    Vitamin D 19

    Serum ferritin 6ng/mL (10-300)

    Se thyroid peroxidase Ab conc 282 iu/mL (0-75)-

    TPO antibody result supports a diagnosis of autoimmune thyroid disease.

    In February my serum ferritin increased to 22 ng/mL (10-300)

    Serum free T3 level 5.2 pmol/L (2.1-6.0)

    Serum TSH level 1.11 mU/L (0.1-5.0)

    Serum magnesium level 0.86mmol/L (0.7-1.0)

    I was taking thyro complex, nutri thyroid, adreset, liquorice root and Siberian ginseng, vitamin c before I had the blood tests and my GP asked me not to take anymore as he was concerned that they would influence the blood test results so I stopped taking all this in October last year. I don't think that this has helped me. I also gave blood in October and my GP couldn't understand how I passed the anaemia test as he says that I have been anaemic for a long time.

    I saw Doctor Peatfield yesterday, I'm not sure if I am supposed to write about that on here or do I need to message you? many thanks for your advice,

    Jenny

  • I haven't read all the posts in this thread, so apologies if I'm repeating what others have said.

    With reference to the vitamin D, perhaps you might feel better if you took a lower dose every day and built up in dose slowly. You are currently taking 40,000 iU per week as far as I can work out, which is between 5000 iU and 6000 iU per day. Why not try 2000 iU every day and see how you get on. If you feel well on that, take 2 on Monday, Wednesday and Friday, and 1 on the other days of the week. Then build up from there.

    Vitamin D3 is easily sourced online, and is one of the cheaper supplements to buy.

  • you poor for lamb! it seems as if this vitamin D and iron goes hand in hand with us thyroid patients....im seeing a nutritionist, I'm on 3 X the amount of vitamin D and she told me that i should use floradix iron supplement, its a lot kinder. Ive also gone gluten and dairy free now and the iron levels and vitamin D is creeping up albeit very slowly.....ive stopped taking all thyroid medications now and I'm awaiting to see an endocrinologist....spoke to an independent doctor today via a private healthcare thing my hubby pays into and he said i need HRT and antidepressants....short of telling him to EFF off  i said look you obviously can't help me...and left it at that.... i believe that you have to keep on and on at the GPs get all your lab work done. T3 and T4 etc...read as much as you can to be informed and go in and ask for a referral to an endocrinologist....thats where i am in my miserable journey....i hope you have more luck than me so far....

    like so many have told me just keep trying...the answers are out there you just have to keep trying...

You may also like...