Haemoglobin 52 so fed up with anemia anyone got any tips that work?

[katystar]

As the title says really I last had a blood transfusion 4 weeks ago and my hb was 95 on discharge from hospital after spending 8 days being bounced round a&e I am so fed up. Anything I can try?

Have the doctors looked into what the cause of the anaemia is, or are they just treating it?

They have looked into it and I’ve had genetic testing that takes a year for results, gastro have diagnosed with Bile Acid Malabsorption but haven’t seen me in 12 months and can’t tell me when my next appointment is. GP is awful so I tend to end up in a&e when things get really bad.

An iron infusion.

I had quite a drastic gastric bleed, was touch 'n go for a bit. Like you, got the blood transfusions which helped a lot but hospital followed that up with an iron infusion called Ferrinject. I was like a flower blossoming after that, and from severe anaemia (I'm sure you know what that entails), to full health and energy over a short period (couple of months) and I've never looked back.

I suppose it depends on what's causing your anaemia. Do you know?

Not a 100% sure gi bleeding, blood in stools etc but at as gastro and genetics won’t talk to each other and I’m waiting on test results not sure. I’ve had iron transfusions and have begged to be put on a regular schedule but no one wants to take control of my care.

https://www.bda.uk.com/resource/iron-rich-foods-iron-deficiency.html

Have you tried taking Spatone?

If there is no obvious cause for the anaemia, I would be pushing your GP for a blood test to rule out Coeliac Disease.

Edit, I'm slow to type, just seeing other replies.

I eat everything I should and have a really iron rich diet, I’ve stopped drinking as I know that can cause issues. I take binders to help with the BAM. I take multivitamins and I don’t seem to get better.

I’ve been told that BAM doesn’t cause anemia but considering most of food goes through me in 5-10 hours I can’t see how it doesn’t affect it.

I'm similar but know why. My worst was Hb of 34. They thought the test was spurious until a retest confirmed it. I required five units of blood and an iron infusion for that one.
Now I have my bloods tested every twelve weeks and as soon as my Hb drops below 8 I have an open referral to a day unit and get an iron infusion. So far I've only required one further blood transfusion.

Out of curiosity I had a look at BAM symptoms etc. One of them is vitamin B12 malabsorption in BAM1. I'm sure you've had B12 blood tests, but just wondered, as deficiency can cause a lot of the symptoms you mention. Not sure which type you have.

I had a b12 injection when I was in hospital the bloods today were meant to check my levels!

how did you get anyone to agree to an open referral? I’m at the point of selling my first born for that.

No real advice but solidarity. My bloods came back as 68 recently got a blood transfusion and iron transfusion. Plummeted again so another iron transfusion. Im awaiting the results of a CT scan, endoscopy and stool sample was clear so not the gastro bleed everyone thought it would be.

Like a PP I’m to get retested every three weeks though and sent for iron if necessary. I’ve been told anaemia is a symptom and they need to stay on top of it to prevent damage to heart etc. whilst we find a cause.

I noticed you were in A&E for a long time did you ever get sent to a ward as that is my go to contact for issues?

I spent 6 days bouncing round a&e and 2 days on a gastro ward who discharged me as they couldn’t find a bleed.

I assume they’ve tested you for coeliac disease?

I was on a general surgical as I initially complained about gallstone type pain ( still complaining to be fair) so still under them as suspecting spleen or liver I think. I assume you’ve had all the tests endoscopy/ camera to check small bowel/ ultrasound/ ct scan with contrast/ mri?

They have just retested for coeliacs disease for the 3rd time and I’ve not had any results.

I’ve had camera tests but not mri,ct or ultrasound although a&e always asks for them.

I’d push for someone to refer you for a CT scan with contrast apparently they are really good. According to the person who runs the scanner, they are such a useful diagnostic tool that everyone is getting one. They aren’t really sure what’s going on with me so I had a scan of thorax/ abdomen and pelvis.Hopefully this will give them a really clear view of blood supply and where it’s vanishing off to. If it fails next step is MRI.

Possibly complain to pals. It’s really not on that you are being left in limbo and having to go to A&E.

I’ve been in a&e since 8:20am about to have a transfusion no one seems fussed about why it’s happening just treating me.