Advice needed on iron

[sbadd]

Hi guys have posted in the past about my 14 year old daughter that pretty much has PA , initially low iron and b12 then positive gastric antibody test, has had loading doses and 3 month maintenance shot to date however her initial reading iron was 9, started her on iron tablets 3 times day initially but dropped to 1 per day as wasnt stomaching well, after around 6 weeks iron had dropped to 8 so then on 2 tablets daily once her body got used to them, within a month had then jumped to 23 which doct was happy to then drop her to 1 per day for a month, just retested and has dropped again to 10.6 from 23 within a month but nurse tells me shes within range as normal????

Dont know that my doct has seen results yet but ive booked appt to see her in 2 days as im afraid that if i leave her on 1 per day she will continue to drop, my daughter only a few days ago complained of tiredness again, this explains it , even after explaining my daughters circumstance to nurse she still insisted it was within range???

Would shebe better with an iron infusion is my question, any advice appreciated

[fbirder]

I'll bet she has been given iron sulfate - because this is cheapest. Ask to be given iron fumarate. This is easier to absorb and gentler on the stomach.

People with PA will have low (or no) stomach acid. To be absorbed, iron needs to be in solution - and that happens more easily in an acidic environment. In PA iron absorption if often affected.

A way of getting the iron to dissolve is to form a chelate (where an organic molecule surrounds the iron atom). Iron fumarate is one such chelate. I take Solgar's Gentle Iron, which is iron bisglycinate - another chelate.

Even with iron sulfate you can form a chelate in the stomach by taking it with citric acid and vitamin C - both chelating agents. Tesco do an effervescent Vitamin C tablet that has both.

[sbadd in reply to fbirder]

Thankyou ill check whats shes on

[sbadd in reply to fbirder]

Shes on Fero Tab

Ferrous Fumarate 200mg

[fbirder in reply to sbadd]

It might be worth asking to switch to ferrous gluconate - another easily absorbed form - to see if that helps.

[sbadd in reply to fbirder]

Thankyou will do

[ickyrocket]

Hello sbadd

I was in a similar position to your daughter, suffering from fatigue and, not being able to get my iron levels to a decent level. At my lowest I was 6 and I could never get it much passed 15, then it would drop again. I have been taking x3 200mg of ferrous sulphate tablets per day for many years - I couldn't tolerate Ferrous Fumerate. Because of the long term use of the tablets and no significant change in my iron levels and my fatigue was so debilitating, I was referred to Haematology at my local NHS hospital where they authorised an iron infusion (ferinject). This was administered around 6 weeks ago. A blood test 4 weeks after the infusion shows that my iron has now went through the roof and is +300 - which is actually now too high but this was expected. I am still suffering from the chronic fatigue but trying to think positive that this may change soon. Ive also recently been diagnosed with PA (I have the antibodies) and I've not long completed my x6 loading doses, I get my first three monthly injection at the start of May. I also have another autoimmune condition (graves disease) which the doctor says is currently stable. I think they are all linked in some way and tiredness is a symptom of them all. I hope your daughter starts to feel better soon. If your daughter does go down the iron infusion route then I'm happy to share with you my experience of this procedure.

[sbadd in reply to ickyrocket]

Thankyou

[LadyBothwell in reply to ickyrocket]

Hello icky rocket. Your message resonated with me and if it's any help I had similar story. I have PA and low stomach acid. Iron levels down as low at 5, could just not tolerate iron in any form sulphate or fumerate. I was violently sick and diarrhoea. Kept being told to persevere "as iron tablets do make some people sick" so For 2 years basically had to choose not leaving house because of diarrhoea or not leaving house due to fatigue. Eventually a lovely haematologist gave me an iron infusion last August. Got up to 9. Which he said was clinging on the edge of normal. Honestly didn't feel better for three months and when they retested had gone down to 6. Another infusion in December and that combined with reading here and deciding myself to supplement with folate, vitamin D and spa tone liquid iron and some b12 patches in between b12 injections has kept me going. Ok I'm not running any marathons but back at work three days a week and holding down a sensible conversation. Will be retested for iron in two weeks so will see then what plan is. Just thought it might help to know first iron infusion didn't make any difference but second seems to

And sbadd. Well done for looking out for your daughter and persisting. I'm convinced I had PA and iron deficiency from my teenage years but symptoms have been dismissed by so many people (in health care and not) and I have IBS and nerve damage which I think are connected

[sbadd in reply to LadyBothwell]

Thankyou for your message xx

[Ryaan]

She has an absorbtion problem. The doctor needs to do blood tests for certain diseases which cause absorption problems to find out why she’s not absorbing.

Talk to your doctor as to what diseases cause absorption problems and to do the appropriate tests.

I think Celiacs disease and Chrons disease are just 2 I can remember but I think there’s more, so those tests are needed.

Some people with Iron absorption problem do take Ferrous Fumarate 210mg for life.

[sbadd in reply to Ryaan]

Thankyou, yes we are seeing specialist tomorrow so im going to bring this up

[Ryaan in reply to sbadd]

Np 🙂