Ferritin of 38

[Biscuitface]

My Ferritin has been dropping since an iron infusion a year ago. It was 98 pre transfusion. 1050 following the iron then every 3 months became gradually lower. It is now 38. Trans sats are 14% , Transferrin 26, Iron 8.4. My doctor says this is normal and filed my report without discussion. I had colonoscopy and gastroscopy a few years ago when I Augmented on Mirapexin and was also anaemic. I have a hiatus hernia and Diverticulitis. No symptoms. Please advise. I take ferrous bisglycinate on alternate days with effervescent vitamin C on empty stomach.

[SueJohnson]

Absolutely not normal. The transferrin saturation is not even normal for people without RLS. You need another transfusion . Ask for a referral to a hematologist. If you can't get that you can pay privately for it - around £800. What city do you live in? I know where you can get private infusions or see doctors who will give infusions to patients in London, Manchester, Cambridge, Sheffield, Plymouth, Truro, Newcastle upon Tyne, Newcastle and Newport Wales.

[Biscuitface in reply to SueJohnson]

I live in Nottinghamshire. Thankyou you Sue

[SueJohnson in reply to Biscuitface]

Sheffield Adult Neurological Sleep Service located in Sheffield will give infusions but appointments are a year out. I don't know whether they give private infusions but you could ask. sth.nhs.uk/neurosciences/ne....

Salford Royal (based out of Cheadle Dr Christopher Murphy - Consultant Neurologist. He suggested an infusion to one person. I don't know whether he can actually prescribe them. (I live in the US so not completely familiar with how things work in the UK.

Your best bet is to get a referral to a hematologist.

[Munroist in reply to SueJohnson]

My Dr referred me to Sheffield but they said they didn’t do infusions for RLS. I live in Nottingham.

[SueJohnson in reply to Munroist]

You're right. I don't have infusions listed for them so I don't know why I said they do.

[Munroist in reply to SueJohnson]

I think someone mentioned it on this forum long time ago which is why I tried it but when I looked I couldn’t find any posts. Strange.

[Joolsg]

I agree with SueJohnson. Push for another urgent infusion on NHS, but if you have to wait a year, visit the Iron Clinic. Prof. Toby Richards has a clinic in Harley Street and Manchester.Just send your blood results & they do the rest.

[Biscuitface in reply to Joolsg]

Thankyou Joolsg

[DicCarlson]

You could try helping the absorption of iron by using a probiotic, Lactobacillus plantarum 299v (LP299v). It is available from Jarrow as Ideal Bowel Support. It is also in the fruit drinks from Good Belly.

jarrow.com/products/ideal-b...

pubmed.ncbi.nlm.nih.gov/343...

[Biscuitface in reply to DicCarlson]

I started those today on your recommendation. Thankyou

[Biscuitface]

Update: Gp referring me to Gastroenterology for an Iron infusion." Not urgent'

[Biscuitface]

Also arranged to speak to Professor Walker later in August

[JunieBJones]

It's sounds like it's timefor another infusion, my MDs say 50 is the cut off for ferritin. Mine is 36 now and am in the process of scheduling another infusion soon. My last infusion was April 2024 and ferritin was 116 following that. I'm feeling some worsening of RLS for the past couple of months.

[Biscuitface in reply to JunieBJones]

I've been referred to Gastroenterology for consideration of an iron transfusion

[Zedz]

I used to get regular infusions until they also discovered b12 deficiency as well. since i have been getting monthly b12 shots my ferritin has stayed over 100 where it used to dip to teens and 20s even 3-4 months after it got in the 100s from infusion. something to consider

[Biscuitface in reply to Zedz]

Thankyou Zedz. I will ask for B12 to be checked at next blood test appointment