low ferritin? feeling awful

[bigarsebelinda]

I've had bloods done recently and my ferritin was low 5. And HB 113.

Gp who I have a good and trusting relationship said I was only slightly mildly anaemia. Gave me some iron supplements which after only one day I am finding hard to tolerate. Feel v sick.

Quite frankly always feel shite, have really bad hair loss, chronic migraine, I'm already really constipated, dehydrated (despite drink sound 2l each day). I struggle to do much. Trip to supermarket takes me out for the rest of the day.

Would you be concerned about ferritin this low ?

I'm not convinced the iron tabs are going to help or quick enough without making things worse.

Get some of these to take too, gentler on the stomach. Tastes like licking a rusty fence so stick in some orange juice -which helps absorption. The side effects from the prescription iron should settle soon, try taking it after food, with ferritin that low you need all the help you can get.

www.boots.com/spatone-iron/all-spatone-products

My iron is always going low, are you sure she said 5? It does depend on your local lab values tbh. My local hospital says ferritin is normal if between 15-300. The next hospital says that over 22 is ‘normal’ so it really depends what your lab considers ‘normal’ but you must be feeling pretty rotten. I hope you feel better soon

Thanks. I will look at that.
Definitely 5. I've got a copy of the results. It was also flagged by a doctor at hospital as being low..
It is not clear where this has come from but don't think my diet is that rubbish nor do I have massively heavy periods.

Spatone definitely. No constipation and gets absorbed better (take with orange juice, vit c helps iron absorb better).

My ferritin was low and felt like shit for months, but mine was down to very heavy periods.

The iron tablets are so high in iron, because the absorption rate is so low (cheap tablets) so therefore you get very badly constipated.

Hope you feel better soon x

Hi OP I have had to have iron supplements in the past with a ferritin of 6 and HB was 111 and I have to say power through the side effects and I had a noticeable improvement within about 2 weeks and by the end of the course felt much better. They say mild anaemia as the Hb is just out of normal range (usually 115-140 for a woman). To make iron absorption most effective take the tablet with a glass of orange juice (vit c aids iron absorption in the gut) and do not have any dairy (even milk in tea/coffee) for half an hour before and one hour after your iron as dairy can interfere with absorbing. Don’t take it on an empty stomach or you will feel the effects of the iron on your stomach more. Low ferritin or iron deficiency anaemia should be investigated further depending on your age and if there is a clear reason or not for having low iron levels (e.g. heavy periods, no dietary iron, Gastro issues etc). With regards to chronic migraine I have had good results with a riboflavin (vitamin b2) and magnesium supplement (there are several pieces or research recently published about this).

Thank you lovely people. I really need some kindness so appreciate your replies.

I need to go out to boots now I think ! Will keep on with iron tabs abs also look at spa tone and some other supplements.

Hi OP
I was originally diagnosed with iron deficiency anaemia a few years ago. Since then I have struggled to maintain my ferritin levels.
Let me share something with you. In order to feel well most people need a ferritin level of over 50. The trouble is that most hospitals classify a level of over 12 as normal. I feel shocking when I’m that low - so exhausted that I’m dragging myself around. And at that stage I am not anaemic (Hb normal), I am just iron deficient. So you need to get your ferritin up to a much higher level; a minimum of 50 but ideally over 100.
One other point. Your GP really should be investigating why you are so iron deficient. If there’s no obvious cause (heavy periods) then you should be referred to your local gastro team for endoscopy/colonoscopy.
There are many reasons why iron deficiency occurs and if you know the cause you are a step closer towards a long term solution. For example, people with undiagnosed coeliac disease often present with anaemia as the main clinical symptom.

@goldendog

Hi OP I was originally diagnosed with iron deficiency anaemia a few years ago. Since then I have struggled to maintain my ferritin levels. Let me share something with you. In order to feel well most people need a ferritin level of over 50. The trouble is that most hospitals classify a level of over 12 as normal. I feel shocking when I’m that low - so exhausted that I’m dragging myself around. And at that stage I am not anaemic (Hb normal), I am just iron deficient. So you need to get your ferritin up to a much higher level; a minimum of 50 but ideally over 100. One other point. Your GP really should be investigating why you are so iron deficient. If there’s no obvious cause (heavy periods) then you should be referred to your local gastro team for endoscopy/colonoscopy. There are many reasons why iron deficiency occurs and if you know the cause you are a step closer towards a long term solution. For example, people with undiagnosed coeliac disease often present with anaemia as the main clinical symptom.

I think the point about the ferritin is the concern. Anaemia isn't so bad though needs fixing (and it means I can't give blood for a long time )

I wonder why ferritin levels aren't seen as a concern so much.

Are there specialists in this stuff?

I’m pregnant and just found out my ferritin is also 5. Hb was 105 which wasn’t too bad, but I was feeling terrible so midwife ran a full iron profile. Anyway I’ve been referred for an IV iron infusion in a few weeks and have been taking ferrous sulphate tablets until then. Started to feel much better after a week on the tablets, and hoping the infusion will make a big difference. Maybe something to ask about if the tablets don’t agree with you?

Thanks for posting. Good to know the tablets helped already.

That's interesting about the infusion. I wonder if you've been offered it specifically because you are pregnant.

I'd pay (within reason!) for one if it was recommended.

I tolerate gentle iron caps (alongside a vit c capsule) much better, no nausea, no constipation. Also BetterYou iron spray.
I read a report of a study that says absorption is better when you take a supplement every other day, which I prefer because 1) it gives my stomach a day off and 2) I don't have to faff around taking my thyroid meds in the middle of the night to ensure a gap of 4hrs between the two.
I'm only using the spray now, if it works to raise my iron levels I'll never go back to tablets.

I suspect I have been offered the infusion because I’m pregnant - only a few weeks to due date so they want to get my levels up fast. Everything I’ve read suggests it’s much more effective than the tablets with no side effects (other than risk of anaphylaxis which is tiny but obvs dangerous), so it’s probably a cost thing that it’s not prescribed more.

I’m also on thyroxine like a pp so way more convenient as don’t have to worry about the med interactions/timing issues.

wrt side effects - try taking them at night. an hour before bedtime.
or ask gp for a different formulation. duodenal tablets dissolve in your intestine and have less side effects.
you need to up your fibre - iron can make you constipated.

for me spatone didn't work to raise my iron levels, it's not enough to help the severe deficiency that you have. it's might be good for you for maintenance though.

You have my sympathy OP. Mine was that low when I was pregnant, I wasn't anaemia. I felt like I was living in an exhausted fog. I took iron tablets and they did help quite a lot, but I did suffer with constipation as a result.

@bigarsebelinda In response to your query about are there specialists for this? Yes there are! if you are referred to a specialist for iron deficiency anaemia it is often through the gastroenterology route as part of the investigation for this is is upper and lower endoscopy (Oesophagus and colon camera tests). There are really clear criteria for an iron deficiency referral (age etc) most GPs are careful with this but may be worth checking with your surgery. Iron infusions are great but also come with a certain criteria as with anything Intravenous there are risks and they usually aren’t given without being seen by a specialist at the hospital first and/or seeing how you respond to oral iron. I work in gastro/endoscopy so see a lot of patients on the iron pathway.

Hi there take a high dose of iron every second day not every day there’s been studies on it it’s better absorbed

5 is shockingly low.

What supplements did your GP provide? How many mg and how often are you advised to take them?

You can always ask your GP to switch you to a more gentle product or to adjust the dosage.

The problem with using spatone is that the amount of iron it contains is very, very low. It’s simply not enough to raise your ferritin at 14mg. In fact, the entire reason why it’s gentle on the stomach is due to the very low iron content! It’s more suitable to take this to maintain high levels rather than treat a deficiency.

The side effects of the supplements do get better in time. My ferritin tends to be low as I follow a vegan diet.

Mine has been six before - also given iron tablets. They did make me constipated but taking with fresh orange helps.

I'm now taking daily spatone - they sell it in Tesco often on 3 for 2

Just searched online for private iron infusions and saw a price of £790 ! Private treatment is very expensive

I've got ferrous fumarate 210mg, 3 times a day.
GP was totally un fussed by the ferritin or it appeared that way.

Thanks for the comments on spa tone etc. I understand it won't be enough now though won't harm as an extra.. I think I somehow need a massive boost on my ferritin to bring my levels up before my hair falls out totally.

I was looking online at a private clinic for an iron infusion though I am not sure if that's the right answer.

I was the same a couple of years ago. Ferritin 3 but HB slightly higher than yours. Think it was 116. I could not take any iron the Dr gave me. If you're not strapped for cash, get some Spatone from Amazon. You'll need to put it in fruit juice but take 2 sachets a day and I was fine by Christmas. Xx

Sympathies OP. I had a ferritin level of 2 and my GP told me my breathlessness was because I was unfit! I’ve found that Ferrograd has had the least side effects, all the other prescribed iron supplements made me horribly sick. It’s really debilitating feeling so awful all the time.

I have been on the exact same tablets and found 2 a day bearable in terms of side effects. But everyone’s different! I heard that ferrous sulphate is much worse but there are more gentle forms of iron, hopefully your GP can prescribe one.

Yes my midwife said that ferrous sulphate (which I’m on) had harder side effects than fumerate, but it was more effective. I have to say I haven’t found it too bad - bit of constipation so far but bearable. I take it first thing, 2 hrs before breakfast, and last thing at night, both times with a small glass of orange juice. Staying really hydrated helps too.

Iron infusions are great. You may need to keep taking a supplement to keep your levels steady
I highly reconnect them. Some people get side affects. I had a slight headache and a metallic taste. But I felt alive again

Sorry to hear this OP. My ferritin was 3 this time last year but had always been low. I got so sick of being fobbed off with 'its because of your periods' and being given iron tablets, I finally found out (by pushing for it) that I was coeliac, so wholeheartedly agree with asking for your GP to do a bit more digging as to the cause of your low ferritin.

I felt awful, kept fainting, memory problems, exhaustion, hair falling out. I ended up paying for an iron infusion shortly after my coeliac diagnosis and felt amazing (or probably just normal) for months. It feels like that's started to tail off now although can't afford another infusion, so using the Better You iron spray every day and hoping that and the gluten free diet will keep my ferritin up. There's a good Facebook group for anaemic and iron deficient people, had some good advice on there. Hope you feel better soon x