Low iron/ ferritin- so lost!

[Lockdownbaby2021]

posted last year about my serum ferritin being 12 and the drs saying it was normal. I pushed for iron tablets prescribing which they did but they made me feel awful, dizzy, sick, stomach pains!!!

Fast forward to this year, at the drs crying as i'm feeling so low, tired, brain fog, palpitations and struggling to put on weight despite eating loads. My periods are heavier than normal too.

she repeated my iron levels and my ferritin came back 17... yes only 5 marks up from the last one😫

She suggested i take a supplement, which I had been doing anyway! so no help at all. She also prescribed something to make my period lighter but i'm reluctant to interfere with nature and not heard much about this medication!

I ended up buying some nutrition geek iron supplements online and taking them with orange juice but I feel like I'm getting worse.

I've bought some spartone liquid sachets but they taste disgusting!!!!

I just want everyone to give me their magic ways of increasing iron... fast!!

I'm prescribed ferroess and my stomach is fine, it was worse with the OTC

It’s appalling that it’s so hard to get an iron infusion on the NHS now. I’ve had them in the past (probably 15-20 years ago at my local hospital) and saw a significant improvement in days. It’s terrible medical treatment of (mainly) women. Iron tablets are notoriously hard on the stomach. I wish I knew who’d made the decision to ration iron infusions like this.

How low is your vitD? Do you know what your blood magnesium levels are? Magnesium and vitD work together sort of like vitD and iron supplements.

Oops that should be vitC obviously! Keeps autocorrecting to vitD because I’m forever advising people to get their levels checked!

Please do take the tranexamic acid, it should really help your heavy periods. You only take it for the first four days of your period.

I'm honestly surprised youre still working. You must be utterly exhausted. You need proper iron though - spatone etc are supplements which dont have enough iron to treat anaemia. If you can't tolerate ferrous sulphate, try ferrous fumarate. Ask the pharmacist for advice.

Please can you let me know what positives you saw after the iron infusion. I cant take tablets as they give me terrible side effects (i.e. bleeding to the point I thought I might have cancer 🙁 which thankfully stopped as soon as I stopped the tablets) so I'm seriously considering a private infusion. TIA.

If your vitamin D is low, please take that as well. In the UK we are all recommended to take vitamin D from October to March.

I had blood tests last week as having some health issues, including palpitations, and was told all the results were back as ‘no further action required.’ So i asked what my ferritin level was. It is 9. And no further action needed… Women’s healthcare is a joke.

my vitamin D was 48 nmol/l when I was last tested for it at the beginning of my investigations

Transemic acid is brilliant stuff. I've struggled with all this for years. Low iron. Feeling like crap. Palpitations, brain fog, period insomnia, pms, extreme fatigue, etc. I finally had the merina coil fitted six weeks ago and I feel better than I have for years. All my levels should sort out over time and I'm intending to never have a period again. Trying to stay natural ruined 10 years of my life.

Have you finished your family?? If so you could consider an ablation. It’s not hormonal so nothing changes in that respect (I was done with fake hormones) but it reduced my periods from a super plus every hour to a regular for a whole day.
i had it as an outpatient on the nhs.

stopped my anaemia (which I didn’t click until I saw 2 old boxes of statins this morning)

Have you been tested for coeliac disease? I only ask as my main symptoms were deficiencies in vit d and ferritin along with debilitating fatigue. The doctors first put it down to the deficiencies themselves and then when they looked further they found it was the coeliac causing it. You mention not being able to put on weight and IBS which are both symptoms. Just wanted to mention it in case you hadn’t been tested as doctors don’t seem to test unless you ask or have a family member with it.

I will try it on my next cycle (in 2 weeks time)

I know, I work full time, have a 1 year old and a 5 year old. try and go to the gym 3 times a week for my own sanity. I'm always on autopilot rushing around on school runs, breakfast clubs, nursery etc! But the last couple of days I've really felt myself struggling at work, yawning my head off and having no patience for customers which is totally not like me at all 😥

I had similar & equally crap response from GP/NHS who refused an infusion. Had one privately £500 approx in Manchester 2 yrs ago so may be more now. Felt terrible but got my levels went way up & now supplement to keep them there.
Apparently iron absorbs better if taken on alternate days (daily means excess that gets wasted). Take with vitamin C or orange juice to aid absorption. Don’t take it with other vitamins. Spatone is a liquid - use a plastic straw to protect your teeth & chase it with an OJ shot or something to take any bitter taste away.
Can’t comment on the medication for your periods. Regardless I’d be wanting to ensure iron levels are still attended to regardless of reducing heaviness of your period is.

Low iron, low vitamin D, IBS… have you been tested for Coeliac disease? It affects 1:100 people but only 1:3 sufferers are diagnosed. Average time to diagnose is 13 years.

www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/healthy-eating/iron/

www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/

this is the result of a celiac test I think?

PS I read Spatone is easier on the stomach to digest & are what women in pregnancy are given due to lower side effect profile. Ferrous funerate tablets are notorious for side fx (nausea, constipation etc) that make for high dropout rate. Spatone are pricier but the liquid is easier to digest.

My ferritin was 2 when my second baby was around a year old - combination of pregnancy and hellish periods when they returned postpartum. Iron infusion totally sorted me out. It works incredibly well. Four weeks after infusion I had my ferritin repeated and it was in the hundreds. I had been anaemic but that was normal again too. All my low ferritin symptoms disappeared almost immediately (pica, restless legs, anxiety, breathlessness, fatigue).

I ended up paying for my infusion because I just wanted it ASAP, but my GP explained the gatekeepers of the iron infusions in the NHS are gastroenterologists. If you have unexplained anaemia, you go to the gastroenterologist and get a colonoscopy and/or endoscopy done, and if there's nothing horrible going on, they give you your infusion. Given this, I would go back to the GP and emphasise your IBS symptoms (and underplay your gynae symptoms) and maybe you'll tip the threshold for a gastroenterology referral.

I agree with PP, care for women with gynae-related anaemia is a joke and frankly wouldn't happen if these conditions affected men.

Are you all in England?

I’m in NI and I’ve had 4 infusions in the last 18m. This is the first time I’ve followed up with ferrous fumarate and I’m feeling thoroughly fantastic. I’m like a new woman.

Please badger your GP. No one should suffer.

I found I had real clarity of thought for the first time in ages, I remember going for a walk and thinking oh this is how normal people feel, I felt sort of drunk whenever I stood up before. It actually helped my digestion too. I’d developed IBS diarrhoea type symptoms but I think my body was firing food through as not enough oxygen to run stomach and brain. slept better as had sort of felt like I was suffocating when lying down. My scalp felt really odd for a bit and then loads of hair growth.

I've had 2 iron infusions in the last couple of years. I'm in the South of England.

My GP prescribed iron tablets for my low ferritin and Anaemia and I explained that I was already taking iron tablets, had taken them a lot in the last and that I found the side effects intolerable. I felt so unwell with my low ferritin that I begged for Infusions and she did some digging about and found she could actually refer me with the blood results I had.

I then used tranexamic acid and the pill to stop the bleeding and now have healthy Ferritin, my hair has stopped falling out and I'm able to exercise and work etc in a way I couldn't before.

I did have to advocate for myself quite forcefully but am so glad I did.

Just reading your comment about how you were pre-infusion is like reading about myself. I feel so disassociated from everything, the natural light hurts my eyes, I'm not processing anything that I'm doing or seeing! Just dragging myself through the days.

And the suffocating feeling ?YES I feel like I can't breathe when lying down, only comfy on one side with my knee right up and window open for a breeze, if i try on my front or back or other side I feel like I can't breathe properly

i had ferritin levels at rock bottom a year ago but have been taking ferrous fumerate 210mg x2 at bedtime for about 10 months and it’s made a huge difference, noticeably improved in just a couple of weeks. I buy mine otc at local pharmacy.

Iron spray from Waitrose is brilliant. Absorbed through the cheek, tastes delicious, no side effects.