to ask for your experiences of low iron levels? DESPERATE!

[modelp]

Ferritin is 8. I have been taking ferrous sulphate for 2 months, two a day as well as a multi vitamin which contains some iron too.

My hair has stopped falling out as much but when I had my bloods done again it had only gone up to 16?! I have felt generally exhausted for years but think it was only picked up after giving birth. I really want to have some proper energy again and don’t know what level it needs to reach for that?

Feel your pain. I’m due a blood test in a couple of weeks and if something isn’t picked up I’m not sure what I’ll do. I have hypothyroidism as well which doesn’t help but I could just sleep all the bloody time. Hope you feel better soon.

Do you know what your Hb is? Your MCV/MCH etc?

There's a lot of useful advice on some Facebook groups for anaemia - The Iron Protocol is American but lots of info and support. Also worth following The Iron Clinic in London. They say Ferritin needs to be 100+ for 6 months before hair stops falling out properly.

I felt like I was going to die with a Ferritin of 5. I couldn't tolerate iron tablets so had an infusion and it fixed it! Worth speaking to your GP again.

I think it took me until my ferritin levels reached about 30 before I felt significantly better. I think maybe it takes about 3 months to really start feeling the effects? Although Ferritin in single digits...oft. Mine only dropped to 15/16 and I felt so bad I genuinely assumed I must have something horrible and wouldn't see the year out. I can't even imagine lower.

How is your B12 and Vit D? I feel like shit if those go low too.

Have you been checked for eg coeliac not just through bloods

I had to get iron infusions and a blood transfusion. It's dangerous when it gets low. You can have a heart attack

I'm the same - been taking them for almost a year and levels gone from 7 to 15 or something like that. Doctors don't seem to be worried about it though. 🤷‍♀️

Have you been taking them on an empty stomach with vitamin C? That's supposed to help.

Mine was 10 after blood loss giving birth. I ended up with a blood transfusion, which felt miraculous, it was as if I could feel myself coming back to life as the transfusion went in. I hadn't realised how truly rough I was feeling until I felt better IYSWIM.

8 is so low, I regularly get down to 6/8 as my drs aren't pro active enough to let me have an iron infusion before that point.

At that point though I can hardly catch my breath, racing heart, zero energy, v pale and then have an iron infusion and I'm ok again for 6 months.

It usually takes 2-4 weeks to kick in properly but at least you know it's coming.

Please ask your go to consider one. This low a level is horrendous.

What's your HB?

My doc said to take them on an empty stomach “just before going to bed” — but I’m always really full then from dinner! When do you take yours?

I have a ferritin level of 5 and I am currently taking ferrous fumarate 210g ….the doctor said one a day but the pharmacy said I can take up to three ….I have heard about the iron clinic but saw the transfusions were £770 …I would be really interested to hear from
anyone that has used them that had similar blood numbers to mine, apparently my iron is in range but not my ferritin

if anyone has had a transfusion could they detail about how the process went, what they had to do beforehand etc and how long it all took? …just one transfusion or recommend more?

thanks - sorry to hop on and ask questions on your post OP

It can take months for iron levels to return to normality I'm afraid. I was in and out of hospital last year due to low iron and resulted in a IV drip. I was drifting in and out of consciousness, losing a lot of blood due to a heavy period that went on for 2 months( I have endometriosis). I'm still back and forth to the hospital keeping an eye on my blood levels and monitoring my iron levels. I've to continuously take iron as they still are not normal months later.

I’d pay for an iron transfusion if your finances allow. My teen daughter had ferritin of 8 too last year. It’s gone up now but it’s still low and she’s had awful symptoms. When she’s 16 I can pay for an iron transfusion if she needs one, until then we struggle along with iron which causes many side effects so she doesn’t always take it. I feel for you as I’ve seen how bad she was with ferritin of 8

My life since I was 18....on iron tablets but tbh having market on toast every morning made the most difference and thinking it a vit b problem but gp refusing the test...

Marmite... It's honestly a huge struggle....I hate it when goes low as you know...

i had an iron infusion on the NHS a couple of years ago. I had ferritin of 7 and haemoglobin of 9.5 I think. I have stomach problems which stop me tolerating oral iron and absorbing it.

From memory our local NHS trust will give an iron infusion with ferritin under 10 and HB under 12. Ask your GP what the threshold is.

Also check your folate levels as they cause the same symptoms. When they refused to give me another infusion last year as my levels weren’t quite low enough, they gave me a strong dose of folic acid. This did help significantly alleviate the symptoms that I had attributed to iron.

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I have no duodenum so nowhere to absorb or store iron - I take double iron tabs daily with vitamin c to help with absorption. Yours being that low and you feeling so ill really should qualify you for a transfusion x

Hi OP, I have had horrible low ferritin levels after my 3rd baby was born in 2020 and literally felt like I was dying.

Obviously, I wasn't, but the tinnitus, gingivitis, aches and pains all over, horrid depression and anxiety, among the usual thinning hair etc made me feel pretty suicidal for about 6 months postpartum. I'm fairly sure it was the cause of what some would consider postnatal depression.

I've been taking a natural iron water supplement called Spatone now for most of the past 3 years which has boosted my ferritin to normal levels. The last time I had a blood test, it was about 75 which isn't the optimum 100 but it's much better than I felt at when it was 17.

I can't tolerate many prescription medicines after I was harmed by an antipsychotic years ago, and it gave me a permanent neurological involuntary movement disorder called tardive dyskinesia. So I didn't take the ferrous fumarate and just took the iron water supplement instead. Luckily it worked well with the added bonus of no side effects whatsoever. 👍

When mine was low I took 6 a day for a month, then 3, now I'm down to 2 every other day. Always take it with a vitamin c source and not alongside coffee.

I also get b12 injections quarterly.

You must feel awful ask for ferrinject iv iron as it will take years to get your ferritin over 100

Ideally you want to take heam iron as it's better absorbed. I use OptiFer which I get from Amazon. If you join the iron protocol you'll see just how much iron you need to take to have an impact.

Do you know what your folic acid levels are like? I have always struggled with anaemia and its partly due to lack of folice acid. I have just been prescribed folic acid and iron tablets

Has your b12 level been checked?

Sorry to also,jump,on,but,any,recommendations as to cheap place to get ferritin levels xhecked? I'm,also about 9,and have bought,3 arrows heme iron but not sure its making any,difference.. need to test again but donr wan,to,spend lots if I cam help it