Anemia - Any advice

[nicolallucy]

Hello! I was diagnosed with severe anemia in January (i'm trying to remember without my notes so please excuse any inaccuracies). My ferratin level when diagnosed was 5 (The GP said it should be 12). And then it has risen to 7 with iron tablets over the course of 6 months. The increase is good but I'm still suffering terribly, chronic exhaustion, constant illnesses and infections which i struggle to shake off, freezing hands and feet and various other symptoms.. oh my hair is falling out massively. I have a toddler who's pretty petite and i can't even carry her upstairs as it exhausts me. I wondered if anyone had any advice with helping me tackle this with the GP as i'm getting nowhere fast and I honestly feel like i'm going a bit mad and no one is listening or trying to treat it. I spoke to a GP on Tuesday who tried to turn this into a mental health issue and I should be coping better. Which is confusing and a bit baffling when this is literally affecting my ability to function.

I get a lot of 'just repeat the bloods' and it's becoming completely unmanageable to live like this.

Treatment so far: I asked the GP to test for celiac (came back negative) and he also had an ultrasound conducted (came back all clear). But i'm not being offered any treatment and i'm becoming incredibly frustrated. They're saying it takes time which is fair enough but it's been over 6 months now. I have a GP appointment this afternoon at 14:30 and I wondered if anyone had any advice for what to ask for as i don't want to be brushed off again?

Oh also I had incredibly heavy periods previously now on the coil since April which hasn't made any difference to the anemia.

Any help or advise would be hugely appreciated.

Hi.
I was also diagnosed with anemia. Yep, in January too! Took prescribed Iron supplements and had blood tests, stool and urine test. I'm Perimenopause, so my heavy periods have been erratic. Also at the moment I'm having all sorts of symptoms this year regarding this Peri problems. I'm not sure how old are you. Are you lacking in certain vitamins? Eating iron rich food along with Vitamin C food or drink. Can you take vitamins, ask the pharmacist or doctor to boost up your energy. I'm tired on and off. Also started taking Tranexamic acid for my heavy periods. Doctor also want me to have another blood test again. Just to see how I am doing.

You probably need an iron infusion.

Unfortunately the women I know who have had them on the NHS had to collapse in public or in the workplace, be taken to A&E, and put under a haematologist's care to have one. If you go in feeling very unwell they test you and just refer you back to your GP.

With one, my SIL, when she was discharged back to her GPs care the GP practice followed the haematologist instructions for 2 years to give her a blood test every 6 months. Then they refused. One month later she collapsed at work, was taken to A&E and oddly when she was eventually discharged back her practice they followed the haematologist instructions until she hit the menopause.

Btw I've been anaemic on and off since I was a teenager due to my periods. I don't know what units you are using but my GP practice want a ferritin level of 30 not 12.

If you're vegetarian, can you face eating red meat at least 3 times a week for a while?

@Julybuddy's point about vitamin C is good. This used to be common knowledge, but I don't think it's so widely known now - take Vit C at the same time as you take your iron tablet.

I learned my iron was as low as yours when the donation service refused my blood! I went on to take a multivitamin & mineral every morning AND an iron tablet with vitamin C every night throughout my menstruating years, and tested normal each year. It took a while to get where it should be. I do eat meat.

Although lots of veg contain iron, it's not the sort our bodies can use properly.
[TMI edit] If you've consumed enough iron, your poo should look blackish.

Glad to hears yours is building up, albeit slowly. Try an extra boost. Good luck!

My advice is to try your best to push for an iron infusion and if you can't, scrape, beg, borrow or steal to pay for a private one. In my experience no amount of food will ever bring your iron levels up enough on their own when you're that low. I take 620mg of ferrous fumarate daily and still not enough. Some will say don't take that much at a time but I tolerate it well fortunately so take as much as is humanly possible (GP advised, I didn't just guess!)

Being severely anaemic is so debilitating, you really have my sympathy. Have you been offered a QFIT test or are they satisfied it's your periods causing it? I'm past the menopause now so have had a battery of tests to find the cause but to no avail as yet.

Do you know your HG levels, iron and transferrin saturation levels? NHS guideline thresholds are so wide, my ferritin was 5 at its worst and is 30 now but I am struggling massively, mine needs to be about 90 to fully function. Everyone is different.

Feel for you xx

Oh and yes correct re big glass of orange juice with each iron tablet plus don't drink caffeine 2 hours either side.

What is your blood count?

I was severely anemic after I gave birth to my first. I had exactly the same symptoms as you and went to the doctors every month for about 2 years before they even checked my blood.

My blood count was 28, I was rushed to hospital and given a blood and iron transfusion.

After a year of testing what went wrong we put it down to secondary postpartum haemorrhage. Did you bleed heavily after giving birth?

Since you have a 2 year old just sounded so similar to what I went through.

nicolallucy Hi, how are you feeling today? Doc appointment ok? I have phoned 111 in the past and they usually quick to respond and treat you as an urgent patient, if you have serious symptoms.. Do you have family or friends nearby? Just someone to talk to too.
Take care.

Does that mean your iron level when you say blood count @pollypocketss?

@Haveyougotallnight

No it was my red blood cell count, which can go down with low iron level too but mine was drastically low to the point my heart valances weren't closing as they were frantically pumping the little blood I had left! So scary I know!

I had two bags of blood transfused and a bag of iron then my body built the rest back up and I have been fine since then.

hi all thank you so much for taking the time to reply to this and for your advice. The doctors appointment was a joke, I’m going to look into a private iron infusion but also I’ve asked for a second opinion / to talk to someone else. They tried to claim I was suffering from PPD (I’m not but I am very frustrated with the anemia situation) but they were saying being tired is just part of having a toddler etc. anyway I’ve asked for a different consultation with someone else next week. Thank you for sharing your experiences it’s helpful and it’s good to know I’m not alone in feeling crap with it.

I don’t know all of my levels I’m gonna get a print out of them to see if anyone else can interpret them, the doctor did agree to repeat the bloods though!

This is interesting about the levels @Reugny as I read that the level was meant to be 30 on the NICE guidelines but I’ve been told 12 by two different doctors at the practice v confused

@Garlickest thank you this is very helpful I’ll try adding a multivitamin in too, I’ve been taking with OJ, also yes not vegetarian but I will try and incorporate more iron in too thank you!

@Haveyougotallnight no I haven’t been offered that test, they’re satisfied it’s my periods which I think it why they’re leaving it as they’re waiting to see what the coil does. But I’d rather rule out anything else too ideally.

Thanks for the tips on how to take I will avoid coffee for longer after taking it. Thanks for taking the time to come back to me

When my ferritin was 3 I was hallucinating / passing out / having the most awful nightmares / falling asleep mid way through a conversation. I was also pregnant, and had 4 infusions before I was up to 15.

My mental health improved within about 3 weeks. OP just keep going to the doctor, demand an infusion and if it's still a no present yourself at A&E.

With that ferritin level, I'm not surprised you're on the floor!!!

Mine got as low as 8 last year I think and I also suffered with hair loss. You honestly need an iron infusion and yes, they are almost impossible to get on the NHS.

If you can afford to go private, please do so. I believe the going rate is roughly £650. Please be aware that they take about 3-4 weeks to kick in, so don't feel downhearted if it's not an immediate boost! But once they do, it's amazing.

I'm shocked at how much your GP is fobbing you off. An iron level that low is dangerous. A level of 2 would get you admitted in hospital!

My gosh, I hope you start to feel better soon! I have been told that ferritin levels should be above 60 to get rid of symptoms.

I felt so Ill while my girls were young and had absolutely no help from my gp whatsoever. I never filled out their baby books, I literally had zero energy.

I recommend this Facebook group The Iron Protocol (for iron Deficiency with or without Anemia) -so much amazing info there. It's helped me so much from finding different types of iron to take, the importance of taking iron supplements every other day (due to a particular hormone, forgot which, that has been discovered to help increase iron absorption).

It's definitely a marathon not a sprint keeping on top of your levels but I hope you can get it sorted very soon.

You need an iron infusion. You shouldn’t have to be putting up with this. Ferratin of 5 and 7 are both abysmal. I had a ferratin level of 5 and consultant wad surprised I had managed to walk from the car park to the appointment!!

No amount of iron tablets or eating kale is going to bring levels back up to where they should be.

I’ve had several (due to a health condition which causes low iron) and they really do help. No idea how to get one without an underlying reason for the low iron being identified though.

Try going private, I can’t imagine an iron infusion should be astronomically expensive.

Iron infusion around £600

I read that the level was meant to be 30 on the NICE guidelines but I’ve been told 12 by two different doctors at the practice v confused

You are not confused. I've heard loads of "information" from various male GPs over the years about imagining my anaemia.

It took changing to a practice where half the GPs are female for me to finally be diagnosed with the underlying cause and actually not have to get private tests due to not wanting to have a struggle to be listened to.

If you are getting the blood tests repeated then don't be afraid to go with your NICE printouts or refer to the NICE guidelines with the level of 30 micrograms/L when you are talking about it. Though the GP may still refuse to do anything unless you have a chaperone (they may try not to allow the person in) or collapse.