Battle for iron infusion

Hey guys and gals,

I am new here and I am hoping for some advice. I have had a low blood count and low iron levels for 3 years now and I am unable to take iron in tablet or liquid form. I have been through gastronenterology, haematology and urology to try and find out what is causing my low iron but as yet to no avail.

My problem is I need iron and for 3 years now i have been battling with my GP and various consultants for an iron infusion, the only one i have ever managed to get was whilst I was in hospital with Urosepsis which was roughly a year ago now.

I had my bloods tested 3 weeks ago and my iron serum level was at 8 and the transferrin was at 11%. I had bloods taken 2 days ago and my serum level is now at 4 with the transferrin at 6%. The GP still will not agree to give me an iron infusion.

I have a urostomy and arthritis which I take 30/500 Co Codamol to help with pain and the only other regular medication is an anti depressant Sertraline.

My friend who is a nurse advised me that once anyones serum level drops to 7 then they would usually be brought in to hospital to receive an iron infusion. I have been told so many contradicting things by consultants and GPs that I am now at a stage that I really dont know what to do so any help or advice would be very greatly appreciated.

Thanks for reading! Leanne

14 Replies

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  • Does your GP give you a reason as to why you aren't being given an infusion? You might try writing a letter to your GP requesting an infusion and referencing the test results that indicate your iron is low. That will prompt your doctor to issue a response and, if nothing else, you'll have that response in writing so that you can complain to a higher level if necessary.

    The low transferrin level makes me think of anemia of chronic disease, since typical iron deficiency results in a high transferrin level. This chart shows how test results are affected in different types of anemia: irondisorders.org/Websites/...

    If you can get a copy of this abstract or ask your GP to pull this one up, it clearly recommends treating anemia of chronic disease with iron infusion.

    tandfonline.com/doi/abs/10....

  • Thank you so much there is some very useful information there and now I can approach the GP with some very good ammunition.

    The GP have repeatedly told me that they cannot organise an iron infusion as the orders need to come from a consultant. My gastro consultant referred me 6 months ago to haematology for them to organise iron infusions but last week they sent a letter to my GP to say its not a matter for haematology so now I am back to square one at the GP and basically I am getting sicker while I am getting the run around.

    Just want to say that your reply is greatly appreciated and it gives me a bit of hope now that there is something i can do to help myself.

    Leanne

  • I can sympathise with this I battled for about 6 years with the same thing by the time I got my transfusion I had a ferritin of 2 and only got it through pushing!!! I would say keep on at the GP they really should be referring by now!!!! Ur levels are very low and you must be feeling lousy have you tried seeing a different GP

  • Hi fiona

    Thanks so much for your reply, and yes i feel very lousy. I am very breathless even when watching TV, I suffer from insomnia, extremely annoying restless legs, racing heartbeat, dizzyness, and repeat infections though no one is ever sure where in my body the infections are. But I have to say this community is wonderful and it gives me some comfort that I am not the only one being treated so badly by the NHS.

    I was born with my bladder on the outside of my body so I am no stranger to surgeries and various unpleasant procedures but I have to say I have an excellent Urologist who takes very good care of me but unfortunately my GP really does not seem to want to treat me for this iron deficiency issue and it is unbelievably frustrating!

    After my run in with the GP again today I have decided to sign up with a more local one hopefully tomorrow if I can and start from scratch with them. I have been with the same GP surgery from birth so I was reluctant to change until now, but with my previous bladder problems I was always dealt with by the hospital directly so I never had any cause to bother the GP for anything more serious than getting my ears syringed lol.

    Ive been reading through a lot of posts here tonight and it really disheartens me that so many people unfortunately seem to have the same abysmal service from the NHS.

  • Just noticed you were referred can't understand why they didn't follow it through! To be fair the consultant I saw was reluctant and not very happy but he did do it!! I would try contacting the hospital and the department you were referred to

  • Hi,

    Can you find out through an internet search, search on local NHS website or a Freedom of Information (FOI) request to local NHS website what the local NHS policy is on iron infusions?

    Is there a NICE policy on iron infusions?

    nice.org.uk/guidance

    If you are in England, your local CCG (Clinical commisioning Group) might be able to tell you what the policy on iron infusions is followed in your area.

    nhs.uk/servicedirectories/p...

    NHS England( or the equivalents in wales/scotland) might also be able to tell you or can be helpful if you wish to complain.

    england.nhs.uk/contact-us/c...

    MPs can also help find out information.

    parliament.uk/mps-lords-and...

    patient.info/doctor/iron-de...

    I am not a medic jsut a patient who has struggled to get a diagnosis.

  • Hi, I'm not in the U.K., not sure how it works there, but can you go to emergency care? You must feel awful and about to collapse. If you collapsed (or very near to it) at emergency, wouldn't they have to treat you?

    just trying to think outside the box. :-)

    As I read your post I got very angry. It is disgraceful that you have not been treated yet!! I wish you the very best and hope you are taken care of soon.

  • HI there!

    Thanks so much for your reply and yes I tried that on Saturday. I went to my out of hours GP service and initially they told me I should not be contacting them about an issue already being dealt with by my GP but then they looked at my blood results from the previous day (that my GP had already reviewed) and noticed my inflammation markers where very high. So they did a dip test on my urine and i have an infection so im currently on antibiotics (the fun never ends lol).

    Basically my consultants and GP involved in my care all agree that I should have an iron infusion but are passing the buck as to whos responsibility it is to actually give the go ahead and organise it. It is the most frustrating experience I have had to date and I have had a lot of dealings with the NHS from birth and I am now in my thirties. I have had some excellent care on the NHS but this situation I find myself in is farcical!

  • Poor you, how very frustrating! I think I would tell them that if something is not done quickly and your health declines because of their irresponsibility, I would threaten a lawsuit or going to the media. That's how angry I am for you!

  • Hi,

    Is there any chance you could consider private medicine eg see a private GP?

    Can you see another GP in the practice or even change practices?

  • Thank you so much for all the replies. I am unable to work so money is a real issue and I just cant afford private treatment. I have been trying again today with the Gp and to put it very simply both my GP and consultant agree that i need an iron infusion but they keep saying its each other that should provide it! I also have a kidney infection had to attend an out of hours gp service over the weekend.

    I am going to try a new gp surgery as i feel i have nothing to lose now my gp advised me today to wait until the out of hours service comes in to effect after 6pm and try them as my consultant is now on 2 weeks leave even though i spent saturday at the out of hours gp to be told i should not have used that service, as my GP had looked at the blood results on the friday and gave me the all clear so i should have waited and spoke to them and i was given antibiotics in the end tho when i seen the doctor.

    Its all such a farce and drains my last little morsel of energy!

  • Hi,

    Could NHS England help?

    england.nhs.uk/contact-us/c...

    england.nhs.uk/contact-us/c...

    Sometimes MPs can be a source of support

    parliament.uk/mps-lords-and...

    In the past I have written letters when I am unhappy with treatment. My understanding is that letters have to be filed in a person's medical notes so are a record of concerns raised. A warning though ...writing letters can sometimes irritate those who are written to.

  • Hi Sleepybunny

    Thank you for replying and i agree with what you say about writing letters. I have felt a bit wary until recently of complaining formally about my care incase it made things worse instead of better. I have some excellent doctors involved in my care and didn't want to complain about the NHS as I have received very good care in the the past with other problems but it has really reached the point where I don't feel I could get treated any worse regarding my iron deficiency issue.

    I live in Northern Ireland but I hadn't thought of researching that side of it so thank you for drawing my attention to it as I want to have as many weapons in my arsenal as possible!

    Thank you again I really appreciate you taking the time to help

  • I have had similar struggles- I am really sorry to hear all this.

    My GP said she wasn't able to refer me for an iron infusion. In the end I chased up my gastro consultant by calling his secretary and eventually he told his registrars to organise an infusion. He was determined I should have one, and my ferritin level was not as low as yours (it was around 7). However, there is no system in place for if and when I need the next one. If it helps, you could say that in other trusts gastroenterologists can refer direct for an iron infusion- mine has done this several times with no involvement from a haematologist.

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