Other Conditions > B12, Ferritin and Folic Acid

Low ferritin + supplementing with iron: what's your experience?

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koalabear:
Hi everyone  sun21

After finding out my ferritin was 16 , and under 70 can cause hair loss, I'm obviously supplementing with iron. [ My other main deficiencies were vitamin D 11ng/dl should be >40, and zinc which was around a 3rd under the minimum, so quite deficient too].

I purchased Puritan's Pride "Easy Iron" which provides 28mg per tablet, whether that's elemental or not I don't know, but 28mg sounds like it should be. So far I've had no problems at all, no pain, nothing except for black stools which I don't see as a problem but actually quite fun  #:-S

How long do you think it will take to increase up to 70, and how long will it take to feel less fatigued? How about the dose, what dose did you take for what level of deficiency, and what were your general experiences with ferritin, iron and the like?

Thanks for your help  flow05

koala xxx

ansteynomad:
When I started my journey in April 2009, my ferritin level was 18 (15-150)  The GP told me it was absolutely fine, but said if I wanted to take a supplement there was no reason why I shouldn’t.  I started off on Floravital from H & B.  Between April and August, it went up to 19.  By that stage, on the advice of people on here, I had changed to Spatone.  Tested again at the end of September, it was still 19.  In despair I tried ferrous sulphate, starting at one tablet a day.  I was prepared to put up with the cramps, the gas and the explosive diarrhoea if I could get my levels up, but eventually I had to give up.  I then tried Solgar’s Gentle Iron, but that was no better, so I kept going with the Spatone, but by the following March, my level was down to 16.

I finally, after three GPs and an endo who said I did not have a problem with iron, saw an endo who was concerned about my ferritin levels.  He said it was quite usual to be unable to tolerate oral iron and he referred me back to my GP for a course of iron injections.  My GP said he could not do these and that the endo should have referred me to the Haematology Dept at the hospital.  I asked the GP to refer me, but the Haemo registrar refused the referral because my haemoglobin was OK.  The GP could not then get hold of anyone in the Endo Dept to advise and he ended up offering me ferrous fumarate.

Subsequently another endo referred me to the Haemos, not because of my level, which was by then 29, but because of my hair falling out.  I had a horrendous meeting with the head Haemo when he told me that my blood was as good as his and I was actually suffering from work-related stress.  He did say he would reconsider if the endos could provide any evidence to support my having iron therapy.  I asked them to, but they never actioned this.

At one point the Clinical Director of the Endo Centre told me that if I could find someone I could trust to inject me and I could get the stuff, I should go ahead and do it myself!  I found someone prepared to inject me, but my GP would not give me a prescription for iron to inject because he said it was too dangerous.

I could just about cope with the ferrous fumarate, but I was only ever able to take one tablet a day instead of the three a day I was prescribed.  I took it for 15 months when I could and it raised my level to 60.  Then I had to stop again because of the GI symptoms.  I was last tested last July and will be tested again in a couple of weeks.  I have since resorted to homeopathy and will be interested to see if that has made any difference.  I was reduced to this by the last endo I saw being totally unable to answer any of my questions, about iron or anything else.

I have a recent e mail from the Clinical Director saying he thinks I need intravenous iron, but that it is not available in the city where I live. I replied, politely pointing out that this is rubbish and asking him to refer me on.  I have heard no more.

I am convinced that my ferritin deficiency is at the root of a lot of my problems, but I am not at all confident that it will ever be properly treated, at least not by the NHS.

koalabear:
Hi AN

Thanks for replying.

Your levels were similar to mine, and I really believe we should try to get up to at least 70. I mean, if hair loss is a serious risk under that level then something must be wrong! [My results came with that note from the lab - about the hair loss and levels <70.]

Have you tried Ferrous Glycinate? So far it's been fine on my stomach etc and it's day 6 for me. Of course I don't know if it's working though and what dose is best. 

Spatone sounds like water, how can that provide enough iron? I don't understand that, but maybe there's someone here who can explain.

Anyway, I agree with you that low ferritin can cause a lot of problems. I hope treating my deficiencies will get rid of my fatigue and blood pressure - if not then I'm stuck!

koala x

ansteynomad:
Gentle Iron is ferrous bisglycinate.  All I can say is it wasn't very gentle on me!

AN

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