Can anyone please help? Low iron

[Caramel78]

For the past couple of years I’ve been feeling so unwell (dizzy, extreme fatigue, pale skin, muscle twitches, muscle cramps, dry skin, headaches, hair falling out, flaking nails etc).

Had some blood tests in June 19 which showed my ferritin was down at a level of 12 (anything below 12 is classed as anemic). I was told to take iron tablets and get tested again a few months later.
My next results came back at 14.
Again I was told to carry on with the iron tablets as it can be a slow process of raising the levels to optimum levels.

It has been 6 months of taking these tablets and my results are now at 25. It’s gradually improving but I’ve heard I need levels of at least 100 to feel well again.

I currently take an ActiveIron 14mg tablet once per day and I also take a spatone sachet now and again too. I’m assuming this is nowhere near enough to get levels up more quickly and I should try something like ferrous sulphate or fumerate (I have ibs already so I’m really worried about taking them as I know the side effects can be awful on your stomach and digestion).
Have any of you got any experience of these and (apart from the awful side effects) did they actually make your iron levels improve faster and make you feel better eventually?

Should also add that I’ve had everything else checked such as thyroid, magnesium, folate, b12, vit d, full blood count, liver function, hba1c etc and they are all within a healthy range).

It takes forever to get an appointment with my GP but I will be seeing her again in 16 days time.

Thanks

Did you ask about pernicious anaemia? Has your GP ruled it out, conclusively? 'Healthy levels' is a wide and imprecise description - as I found out to my cost!

Eventually went to a haematologist because my ferritin had been crawling along for 5 years... she sent me down the corridor for an iron infusion.

@CuriousaboutSamphire I did mention this to GP as a possible cause but she said my b12 is at 122 (range between 38-188) so she said she’s fairly certain it’s not that

Ah! Mine was almost non existant by the time I got a GP to listen to me!

It is often overlooked / dismissed if levels are borderline!

Yes, you need a higher dose. Mine is also 12 and my daughter's is 4
I've found Ferrous Gluconate the easiest in my digestion. I take 600mg, but you can start out at 300mg. Don't take with tea or caffeinated drinks. Ferrous Fumerate and sulphate both give me horrendous heartburn.

I found it incredibly hard to find iron tablets that I could take that didn't impact too much on my digestion, so you have my sympathies if you have IBS before you supplement with iron tablets.
I suffered from two really bad bouts anaemia a few years back (about 8-10 years apart). From memory it was around two years with iron tablets on each occasion.
Do you know what is causing the anaemia?
If you're still having periods, if they are heavy, that's likely to result in treatment taking longer.

When was your blood last tested? If not within the last couple of weeks, maybe worth asking for repeat tests so that you have up to date results, and more of a trend to discuss with your GP.
(I email the GP, and pick up a blood test form from the surgery)

Also, if you don't have access already, ask for online access to your patient records. That will give you the opportunity to see results in advance of your GP appointment.

Thanks will check it out. Can you buy these things online or need a prescription? Want to get started now on something stronger but can’t see my GP for over 2 weeks. If I need a prescription I’ll just wait :-(

It’s taken me almost 3 years to get my iron levels up to even just normal levels due to my IBS and most iron meds upsetting me, I’ve had to do it with diet and Spatone! I feel your pain. I have an appointment next Friday to discuss this issue and I booked the appointment over 6 weeks ago! Do you know the reason you have low iron? Do you have any gynae issues? My low iron levels are probably down to the fact I have uterine polyps and awfully heavy periods.

Was that active B12 she checked? That's an odd range for the usual B12 tests.

I took ferrous fumarate when my levels were low, and felt noticeably better after 3 or 4 weeks can't remember how well the blood levels improved but they did.

I also have IBS so know how much you don't want to risk the side effects but I'd try them out, you're going to struggle to raise your levels quickly without proper tablets. I took them with food rather than empty stomach, I took with orange juice to aid absorbtion. If they do cause unbearable side effects then I think it clears out your system pretty quickly if you stop the tablets, but hopefully it won't effect you badly anyway

Seeing the comment about caffeine above, avoid caffeine around meal times as well - it impacts on the ability to absorb the iron from food,

@fr0g the last bloods were just taken last week (previous ones were June, Aug and Oct 19).
I do have quite heavy periods but wouldn’t say they are ridiculously so.
They aren’t sure what’s causing the anemia as other blood tests are all fine and I’ve had a gastroscopy and colonoscopy for my ibs last year which didn’t show anything like ulcers which might cause anemia.
I’m on the contraceptive pill so I’m not sure if that might be playing a part.
My diet is quite healthy and I eat things like red meat, green veg, pulses etc). I don’t smoke or drink.

Arrghhh it’s so frustrating!

@fr0g I don’t have any caffeine luckily as it’s one of the worst things for my ibs

@RhodaCamel I had a pelvic ultrasound thing done last year to check for fibroids etc and everything looked normal. My periods are really heavy for a day or two but light after that.
@Lellochip I’m not sure what sort of b12 test it was but she seemed to think it was a good level and not in the lower range. I’ll definitely try the stronger tablets with orange juice and fingers crossed they won’t destroy my digestion any further.

I had a mirena coil fitted, which stopped periods altogether - and was only after that that my blood levels got back to normal.
Good luck with it all.

An iron infusion would definitely help so if you carry on having problems it wouldn’t be unreasonable to ask for a referral to a haematologist.

If you pop over to the general health board I started an almost identical thread to this about a week ago and have been given some really great advice. Lots of success stories on there too.

Good luck, I know just how hopeless it can feel at times!

I can’t take oral iron so had iron infusions. Since I had a hormonal coil, similar to the mirena, I have no periods at all, my iron levels have gone up and I feel much better. I wish I’d had a coil years ago.

@Caramel78 yeah it looks a good level, certainly wouldn't worry about b12 at 122.

The tablets I took were available (and cheaper) over the counter - www.expresschemist.co.uk/Galfer-305mg-Capsules-100.html#.XhiCSPinzqs

I took one capsule 3 times a day, but obviously I'm not a doctor etc, you could ask a pharmacist for advice on dosage? Whatever you take, you could start low and build up once you see how it effects your IBS

Vitamin C helps iron absorption, and drinking tea inhibits absorption, so hence drinking orange juice, and avoiding tea, when eating an iron rich meal helps.

@lellochip thanks I’ll order some of those and discuss what dosage to take with my GP. Really hope I’m better by the end of the year as the exhaustion is crippling. Thanks for all your tips everyone

seconding the vitamin C advice. Medically demonstrated to help with iron absorption!

I'm a bit bemused by some of the advice you're being given. The reference range for B12 is 200-900. At 122 you are massively deficient unless you are not in the UK and a different scale is being used. If not then you need a course of 6 injections every other day and further bloods over 3-6 months to check it doesn't go back down again. If it does, then you need a maintenance injection every 3 months or so. You should probably also get an intrinsic factor test to see if you can absorb oral B12 (i.e. if this is pernicious anaemia or just dietary deficiency) especially as you are also iron anaemic and there may be a more general gastro problem underlying both. I must say your symptoms sound like classic B12 deficiency and if so you will feel like a new woman after some injections. Sorry you've been feeling so awful for so long. HTH

When my iron was low, the doctor prescribed tablets which were 3-4 times stronger than the ones you can buy across the counter. Those did the trick for me. I suggest you go back to your doctor and ask about stronger tablets, or whether they would recommend taking more than the recommended dosage. Possibly they hadn't realised that what you buy across the counter is not the same as what they can prescribe.

(Someone pointed me at a Facebook group where many people held that the doctor-prescribed strength was still inadequate, and there were a couple of other vits/minerals they recommended taking alongside. That group seemed rather OTT and unwilling to believe that the level I'd been prescribed could ever be enough. I suspect it varies from person to person.)

@EagleVisionSquirrelWork I queried this with the GP at the time as had googled beforehand what the range should be. She said they use a different scale now (39-188) and I’m at 122 which she said is great.
I’ll double check with her again when I next see her

Yes, I would. And yy to a higher iron dose. 600mg a day if you can tolerate it without gastric side effects, 300mg if not. Your GP needs to pull her finger out if this has been going on a couple of years without improvement. Do you feel comfortable pushing her a bit? Is there someone you can take with you to your upcoming appointment to advocate for you if not?