Anaemia

[Wishywashy13]

I received a diagnosis of anaemia two months ago with a ferritin level of 4. I’ve been prescribed ferrous fumarate ever since, but I’m not feeling any better. I still have very little energy and struggle with breathlessness.

Is it better to wait longer, or shall I see my GP about it?

Have they set up another blood test or given you a certain amount like 3 months worth.? It can take a while

I’ve been told that I’d need another blood test booked in for three months time, but I haven’t booked it yet.

I find ferrous gluconate better than ferrous fumerate (which makes me feel sick). It does take time to build it up though.

The sachets plus tablets worked quickly for me but I also had an infusion, my ferritin was 3 and I was poorly. Tablets are hard going on your stomach.

If its already been 2 months i would get it booked in soon and then you will have more of an idea of whats going on

I was diagnosed with anaemia last year. I was told that the standard is to get another blood test after a month just to check that your levels are going up and the treatment is working.

Our gp surgery does 3 months, a 3 month prescription and then retested. But then up until recently I was always in and out of being anemic so first time might of been different and im just not remembering properly

@Wishywashy13 can I ask how you're feeling? I'm in the same boat.

I feel much the same tbh. I have a repeat blood test booked though. Hopefully, the ferritin is had a better level this time 🤞🏽

Ask for an infusion. I have them regularly, and while they’re a pain - they’ve at least managed to make me feel somewhat human.

@Wishywashy13 sorry you feel like that. I've been on ferrous fumerate for a while but still feel the same. Can I ask what you're main symptoms are? Mine is breathlessness, like I can't get a satisfying full breath of air when breathing

As suggested by PPs, I'd be pushing for an infusion. Once iron stores are severely depleted it is very difficult to build them back up through supplementation. If your GP won't consider it and you are able to afford it, it is straightforward to arrange privately. It will probably cost you around £700-800.

You also need to get on top of whatever is causing the anaemia, or you'll be trying to fill a leaking bucket. Heavy periods are an obvious possibility - a hormonal IUD is normally the first port of call to address this.

Good luck, it is a horrid thing to be struggling with (speaking from experience).

Breathlessness is my first and most obvious symptoms when my ferritin drops below 5 (although some people will be symptomatic earlier).

Many GPs lack knowledge about iron deficiency and are reluctant to recognise that iron deficiency without anaemia (low ferritin but hg count within range) can cause very unpleasant symptoms and needs to be treated effectively.

Where do you get them done?

@Mini2025outpatients at my local hospital - I’m in NI.

Takes about 2.5 hours by the time they’ve weighed me, filled in the paperwork and hooked me up.

Do you know what might be causing the anemia? It might be worth asking for a more comprehensive blood test checking for other vitamin deficiencies and also for coeliac disease if this might be a possibility.

Thank you. I’ll see how my repeat blood test is like, and then I suspect we’ll take it from there.

I certainly won’t be able to go private, unfortunately!

Breathlessness and heart palpitations, mostly. I don’t feel any different than before. (Even though I’ve completed my three months dose of ferrous fumarate)

I’m having my bloods re-tested the week after next.

You must have been feeling like death.

Mine was at 9 and the doctor immediately sent me for an intravenous iron infusion. I think it was called Venofer. This was years ago and I've figured out that my ferritin needs to be at around 100 -- any lower and I start getting symptoms again.

Are they looking into the cause of the iron deficiency? I had a colonoscopy and abdominal scans to rule out occult bleeding. I also have Hashimotos and only half a thyroid gland after having surgery, so I take Ultroxin thyroid hormones. I think they are connected.

But the biggest cause I think was my very heavy periods. I had a hysteroscopy and the gynae found and removed 10 big polyps, I had a thickened uterine lining with hyperplasia.

Still have heavy periods though. I use tranexamic acid and ibufrofen to reduce the blood loss.

And I take my iron supplement every second day - my cousin is a haematologist and told me to do this. She also said reduce caffeine, and take your iron supplement with something high in Vitamin C like orange juice or ascorbic acid in some form.

I don't live in the UK so I'm not sure how it works there but you need to advocate for yourself. Many doctors don't know that the 'normal range' of ferritin is way too low so they say 'results normal' meanwhile you feel like you're at death's door.

Solidarity x

All of this
i take mine every other day with vitamin c and it takes a while to get up, mine is currently 66 but am aiming for higher especially as my saturation is low

My levels were 4 back in March/april and I had 3 months on 1200 mg ferrous glutamate. When re tested mine were 34 so massively improved.

I think the main cause of mine was a 19 day period and I’ve since had the Mirena coil fitted and still taking normal iron supplements. I lost the breathlessness symptoms pretty quickly so would be concerned if these are continuing

you def need to push to see if there is anything else causing it to continue

Back in April my haemoglobin was 66 and ferritin 3. I had a unit of blood, gastroscopy, colonoscopy and tested for celiac. They didn’t find anything and I had 200mg ferrous fumerate for 3 months and my HB is now normal and ferritin 21. I’ve to continue the iron for another 3 months and then test again. I felt really dreadful at the time but the breathlessness and lightheadedness went away quite quickly.

Just updating the thread. I had a repeat blood test and I was told that my ferritin levels were still low, so I have been issued another three month supply of ferrous fumarate, with another blood test booked in for December.

I’m also anaemic and have been for over 2 years due to heavy periods. I was originally on 3x 200mg per day of ferrous fumerate. I am now on 1 x 200mg/day and although I take it religiously, I’m only just surviving!

It initially took me around 4 months to feel better, less dizzy, less chest pain and palps.

As others have said, Take your iron with vitamin C supplement, and avoid caffeine.

Red meat and leafy greens also help.