Banging my head against a brick wall

[Pennypingu]

ferritin is only 8 still (5-204) HB is 124(115-160) I believe you can have iron deficiency without anaemia but GP, consultant , won’t have it. As said before, can’t tolerate any oral iron and because my HB is in range I’m not a candidate for ferritin infusion although have had one when ferritin was 13 and HB in normal range. Trying to eat plenty of iron rich food but because of my IBS, Diverticulum it’s not staying there, so weak now daily things are being affected, last couple of weeks have lost half a stone and hair is coming out in handfuls again. All other bloods are as mentioned in last post, not due any for couple of weeks, GP not interested as l have consultant appointment in October, feel like I’m not going to last that long.

[TiggerMe]

Previous post Three Arrows Heme was suggested did you give it a go?

[HealthStarDust]

What type of consultant are you seeing? Could they help?

[Pennypingu in reply to HealthStarDust]

Seeing Endo consultant, also Healthcare for older people consultant who are looking at me generally to sort out all my other health issues, so far just had to do 6 months of BP readings when I have episodes of near collapse/fainting and food diary to find what I’m intolerant to, what’s causing weight loss, then will move onto other issues. She’s actually not investigating low ferritin either.

[HealthStarDust in reply to Pennypingu]

They could support you by writing a letter to your GP, so maybe bring it up with any of the consultants.

I’ve never heard of Healthcare for Older People consultant.

[Pennypingu in reply to HealthStarDust]

HCOP is for pensioners who the Gp’s basically don’t know how to treat them any further when general medicine doesn’t help, these consultants just have a better dealing with how the older body works and can pass you on to the right departments in the health service, long waiting list for appointment but once your in then GP and consultants can liaise between each other. Only had one appointment so far next appointment October, 6 months between appointments though . NHS .

[humanbean]

Some links you might find useful and interesting...

.

Iron deficiency without anemia : A diagnosis that matters

ncbi.nlm.nih.gov/pmc/articl...

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Iron deficiency without anemia – a clinical challenge

onlinelibrary.wiley.com/doi...

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NICE - Anaemia - iron deficiency Clinical Knowledge Summary

cks.nice.org.uk/topics/anae...

Note on the page above it says part way down :

Anaemia is defined as a haemoglobin (Hb) level two standard deviations below the normal for age and sex.

In men aged over 15 years — Hb below 130 g/L.

In non-pregnant women aged over 15 years — Hb below 120 g/L.

In children aged 12–14 years — Hb below 120 g/L.

In pregnant women — Hb below 110 g/L throughout pregnancy. An Hb level of 110 g/L or more appears adequate in the first trimester, and a level of 105 g/L appears adequate in the second and third trimesters.

Postpartum — below 100 g/L.

and then further down still (my underlining) :

Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency. However:

Ferritin levels are difficult to interpret if infection or inflammation is present, as levels can be high even in the presence of iron deficiency.

Ferritin levels may be less reliable in pregnancy.

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People can be iron deficient long before they are officially anaemic.

This may not be relevant to you but people can also be anaemic if they are deficient in vitamin B12 and/or Folate. See this link, also a Clinical Knowledge Summary from NICE :

cks.nice.org.uk/topics/anae...

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I don't know if you've tried supplementing iron salts of the type that doctors prescribe. They can actually be bought without prescription from pharmacies.

bnf.nice.org.uk/treatment-s...

And the most commonly prescribed supplements are :

bnf.nice.org.uk/drugs/ferro...

bnf.nice.org.uk/drugs/ferro...

bnf.nice.org.uk/drugs/ferro...

Ferrous sulfate is very poorly tolerated by lots of people so if you want to try iron salts I would give the ferrous sulfate a wide berth and try one of the others.

An alternative to iron salts is heme iron supplements and it tends to be tolerated by far more people than iron salts. A popular brand on the forum is "Three Arrows" :

healthunlocked.com/thyroidu...

threearrowsnutra.com/en-uk/...

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Getting iron to rise can be very slow. Unfortunately doctors often only prescribe enough for a couple of months if they prescribe at all, at least in my experience. When I gave up on doctors I started buying my own iron pills. My serum iron wouldn't rise at all to start with so I aimed to raise my ferritin to mid-range instead, since at least my ferritin did rise (very, very slowly). I was taking full dose iron pills for nearly two years to get ferritin to mid-range. All that time my serum iron hardly budged.

Once I got my ferritin to mid-range I experimented to find the dose which would maintain my ferritin where I wanted it. I kept that up for another five years. Then for the first time my serum iron started to rise. I monitored that for a little while longer then stopped iron completely. I still test a full iron panel a couple of times a year and always keep some iron supplements in stock.

I could never tolerate taking iron on an empty stomach so it probably slowed down my absorption a lot since I took it with food.

[Pennypingu in reply to humanbean]

Thank you I shall have a read, have read up quite a bit as want to go armed with information at next appointment.