Hello

As you might have read over on our main forum, I found out a couple of weeks ago that my ferritin was very low: 16, when anything less than 70 can cause hairloss [something I had very badly in autumn 2010].

My questions to you are:

• What dose you think would be sensible?

• how long does ferritin take to build up?

I'm going to a thyroid specialist at the end of the month, but that's still nearly 2 weeks away.

Since finding out about this I've been taking Easy Iron 2 tablets twice a day. I'm running out now and have reduced to 1 tablet twice a day, so 56mg. I take it with vitamin C.

I haven't had any side-effects. Some people get constipation on iron, but taking 10g of vitamin C a day has solved that problem!

I think I've had low iron for years but never really thought about it properly or taken the supplements I should have done I know that iron has to be taken some hours before/after zinc or levothyroxine and am careful about that, but it's difficult to take with enough time between the iron and tea or dairy products because I love my pots of tea and yoghurts, but I've discovered that tea is terrible for blocking iron!!

Thanks for your feedback and advice.

koala x

Hi Koala
Have a look at the stuff on the sttm website about ferritin (sorry I'm on my iPod and don't have a clue how to post links on it!). I *think* they suggest between 150 and 200mg elemental iron, so you need way more. I don't know how old you are, but if you're still having periods, you'll need a high amount. How long it will take to raise will depend on how good you are at absorbing it and your bodily needs. It could be a few months.

Out of interest, has your low iron level given you problems with tolerating your thyroid meds?do you get a racing pulse at all? (this is my problem. I'm struggling to get my iron up but then I'm coeliac too).

Hope that helps a bit.

Sooze xxx

ps thanks for the lovely holiday!

I was anaemic a few years back and doctor put me on 200 mg of ferrous sulphate three times a day. I was fine to begin with but then the constipation set in and awful stomach ache. It soon brought my levels up though. I've done a bit of reading around this and ferrous fumerate is supposed to be easier on the stomach. As a maintenance thing I take a liquid iron supplement sometimes called Spatone. It might not be enough if your levels are low though.

Rosemary
x

I'm on ferrous fumarate for over a year now. My levels have been climbing very slowly but are improving. I am pretty sure I am having absorption issues though so am on a gluten free diet since early December. If I suddenly improve in the next few months I'll know it was probably that I needed to get my ferritin up.

I take it with folic acid and b12 and vit c all at lunch time. I had low b12 and folic acid at the start of my journey two. My theory is that all 4 are needed to make red blood cells. I take them all 4hrs away from any thyroid meds and I take hcl and pepsin at the same time to promote absorption.

Thanks for your replies

@ sooze

Thanks for the idea about looking on the STTM site, I found the page and you were right, they suggest 150-200mg elemental iron. I've been taking far less. And about my age, I'm 45 and still got my periods.

I haven't had a racing pulse, in fact mine slows down more than it speeds up. My blood pressure's a terrible problem though, the diastolic pressure is often >100. But it could well be that my BP is bad because of the low ferritin interfering with the thyroid meds - I think that's likely because when I reduce my thyroid meds, my BP is perfect for a fortnight, but then I start going hypo.

Out of interest, what type of iron are you on and what dose? What's your experience of taking it? being coeliac must be nasty, how did you find out about that?

koala xxx


@ Rosemary

Ah, 200mg three times a day, wow , all of you are mentioning much higher doses. I've heard that certain iron tablets can cause terrible tummy ache. constipation etc Good it brought your levels up though. Yes I've seen Spatone on the internet, but like you said I think I maybe need something stronger for now. That sounds like a great way of sustaining good levels once you've reached them.

koala xxx


@ MaggieM

Interesting you take it with hcl and pepsin. I didn't even know what they were and have just looked them up. Yes I've also heard about the B12 and folic acid being important for red blood cels. My levels of those were really good, luckily. My low levels 2 weeks ago were ferritin, zinc, vit D and potassium.

What were your ferritin levels, and what are they now?

koala xxx


***********

This total iron and elemental iron business is confusing. On my bottle is only says 28mg, without saying if it's elemental or not. I hope it is otherwise what I've been taking was extremely minimal. I'll keep you updated what the thyroid specialist says next week.


koala xxx

Hi Koala

I strongly suspect that the iron you're on is 28mg of elemental iron. That's what mine is. I'm taking iron bisglycinate (sp?). It's chelated iron by blue bonnet which I buy from iherb. I'm taking this sort as I tried so many different types and haven't been able to get my iron up. I'm taking 6 a day now. I think I wasn't taking enough before. I've also added one dose a day of transdermal iron - that's iron in an oil base that you can rub into your skin. It's supposed to be absorbed much better and because it bypasses the gut, you don't have to worry about taking it away from thyroid meds/calcium/zinc.

I think my iron situation was made worse by pregnancies, miscarriages and breastfeeding, which will all have depleted my already low iron stores a lot. My periods are very heavy too (I guess coz I'm still very hypo) so I probably need a lot of iron.

As for the coeliac disease - I'd had symptoms for years and in fact had been tested as my sister had already been diagnosed, but the test was negative. I then ended up in A & E with excrutiating abdominal pain. All they could discover was that I was very anaemic (close to needing a blood transfusion) and had very low bp. I insisted on being re-tested fir coeliac disease and this time my antibodies wre off the chart and the villi in my guts were completely obliterated. I've been strictly gluten free for 6 years now and my tests are now normal, but the gastro said I might never be able to absorb certain things like iron properly. Despite this, they won't give me iv iron coz my ferritin isn't bad enough. The gastro suggested I come off iron so my ferritin drops low enough for them to give me iv iron....

All the best.

Sooze x

Hi Koala,

I cant remember exact figures- I have them all recorded on the other site. I have print outs but I am not sure where they are right now. I think my ferritin was 14 in Jan 2011 and by Oct/ Nov it was about 78, not quite at the 90 they recommend..... I was pretty disappointed because I spent months eating lots of iron rich foods, raw fruit and veg juices in the morning and never missing my ferrous fumarate... I've just had it tested again recently. It'll be interesting to find out the results when I see my doc again in March...

@ sooze

Aha, you take 6 a day, in that case I'll take 4 then. I'd take 6 too but I also need to take zinc because my level of that was pretty bad and they have to be separated by a few hours. The transdermal iron sounds very interesting.

Would you prefer iv iron then? I've heard people can suffer nasty reactions to it, but you've got some serious absorption problems so I suppose it'd just be a lot more efficient. What levels of ferritin would they consider low enough for that? Would they give you an iron iv if you went private?

Sorry to hear the coeliac disease was so advanced when they finally diagnosed it. With the gluten thing, would that show up on an allergy test, like a RAST? I was RAST tested for a lot of things a while ago, and they found a lot of allergies but I was not in the slightest bit allergic to gluten. Does that mean I haven't got coeliac disease? I mean I never get tummy ache or anything, I was only wondering because of my low ferritin, zinc and that.

koala xxx


@ MaggieM

Hey our levels were nearly the same, yours at 14 and mine 16. Getting up to 78 is brilliant!!! I hope your recent test results show an even further increase.

Do you feel any different? I'm really hoping my tiredness will improve, I struggle with that more than anything else. I've read that it's a common symptom and does normally improve.


koala xxx



General question: look away if you don't want to read about poo


Is it true that if your poo goes black, that it means your body is absorbing the iron and that it's working? I hope so, because mine's black.


koala xxx

The transdermal iron arrived this afternoon - I'll give it a go later and report back.

Sorry to say, it's the iron you don't absorb that makes your poo black!

AN

Hi Koala,

to be honest I was hopeful it was the ferritin but so far I dont feel any better, I'm nearly at my wits end with my ongoing symptoms.

Imagine that we had nearly the same result... low eh!

I've never had black pooh though, oh maybe at the very start of taking iron but never since.

I'm awaiting the results of a private poop test at the moment as doc checking in case its something else causing the constipation. It's definitely not my diet., I even take psyllium husks regularly as well as prunes and eat lots of fibre and drink water all day (constantly thirsty). I'm sending off an adrenals test monday as well- had to wait to get paid tomorrow first!

It must be something else causing your symptoms then I suppose, because 78 ferritin isn't too bad at all really. It could be though that there's a time delay between the ferritin building up and every cell getting what it needs, I don't know about that one. It's certainly the case with thyroid levels, that some cells take longer to recover than blood levels would indicate.

Regarding your constipation, have you tried vitamin C? I find that 10g a day split into 2 lots of 5g works and I've also suffered from chronic constipation. I bought vitamin C powder because it's so cheap and concentrated, much cheaper than those fizzy drink tablets or whatever. The only side effect is farting

koala x

Hi Koala,

I take vitamin c at lunch time 500mg but I have never tried a large dose a couple of times a day....

HERE GOES!

I am so constipated today I look 4 months pregnant- we call it my poop baby!

Doc is ruling out parasites before returning to look at thyroid/ adrenals as cause I think....

I really believe that all my major symptoms- ongoing constipation, mh symptoms anxiety/ low tolerance for stress; hormonal swings and really light periods, dry skin, hair falling out are screaming out that my meds are wrong but so far the docs don't see it.... :face:

When you say dry skin, is it like what Brass described as dandruff legs? I've got that again now

I wonder how you'll find the high dose vitamin C. It worked in a day for me let's hope it does the same for you

koala x

Maggie just noticed you saying you are constantly thirsty have you had a fasting glucose tests done .If not it might be

worth getting one done. Motherelle x