I'm considering one but the consultation alone is £200 plus the transfusion if it's deemed necessary, is almost £500 so it's a lot of money and I just wondered if anyone would recommend it?
I'm veggie so it's much harder to get enough iron to increase my ferritin. I take 3 iron tablets every other day and I'm having to do that every other week because the constipation is awful. I'm just desperate to get ferritin up and I feel like it could take me years at this rate.
I have had one iron infusion of ferrinject per year for the past 2 years. It is amazing. Takes about 3-6 weeks to feel the benefit but it lasted me the year. I have chronic iron deficiency and couldn't tolerate iron. I had every symptom of iron deficiency so in the end saw two different gasto consultants and one agreed to the infusion. Had to jump through hoops for the second but doubt I'll get any more via the NHS. My ferritin falls to about 7 after 12 months and is within higher reference range after 6 and 12 weeks. Hope this info helps. I thought I had depression or was losing my mind with the symptoms. Good luck
Thank you! Glad to hear it helped you. You must feel dreadful when your ferritin gets so low!
I couldn't even convince my GP to run an iron panel so trying to convince her to refer me on for an iron infusion was just never going to happen so I'm going to go privately.
Ferritin currently 18, has been 15 but never fallen out of range.
At a cost of £680 in total, I'm hoping just the one will do! I'm hoping I can keep on top of my iron after this. 🤞🏼 Otherwise I guess, it's a case of saving up every year!
It if keeps falling consider an inability to absorb iron. It runs in our whole family no known cause. Grandmother mum sister daughter nephew etc. I started tranexamic acid for heavy periods to preserve some iron that may be worth thinking about depends why you are deficient in first place. Good luck 🤞
I was wondering this too but I suspect it's a lifetime of iron-poor diet, and 2 surgeries; I lost blood but not enough for a transfusion. Which won't have helped!
My level seems to have maintained for the last few years so I'm hopeful it's not a long-term issue. 🤞🏼
Clearly your iron/ferritin levels are low. And a transfusion will help to improve your results, hopefully quite dramatically.
Please don't let your levels drop into your boots before trying to improve it. You need to maintain your levels at a good place if you can. Don't let it drop a lot then have to raise it.
So many people (mostly women) have a roller coaster of okay levels after treatment, then it drops low, then it takes ages to get treated again, then it drops low, then they have to fight for treatment again... and so on and so on.
Doctors rarely see the need for an iron panel, so you might have to pay for your own (privately) if you want one :
The above test is a finger-prick test which can be sent back to the lab through the mail. No doctor is required and results are sent via an account that you have to set up on the website before ordering the test.
For possible discounts on the price, check this link (they are highlighted in yellow) :
I'm really hopeful I see some good effects and trying not to get too excited about it.
It will be nice to climb the stairs again without needing to stop for breath at the top! And it would be delightful if it helps reduce the tinnitus I have.
Even if it does nothing though, I'll be pleased to have all 4 vitamins optimal so I can see what my conversation rate is like.
I'm going to be keeping an eye on my iron going forward; GP is useless so I'll do my own iron panel every 6 months or so I think. At least until I can get my head around what an iron rich diet looks like.
Gosh, I never realised you could just book a private iron transfusion. Should you not have haemoglobin, etc tested? Do you not require a referral or specialist ok?
Shame you can't have some of mine. I am laden with the damn stuff as have haemochromotosis. My venesection blood is all thrown away though because contains various hormone replacement.
I had to have a telephone consultation to check it was the right course of action.
The consultant asked for results of
Full Blood Count, Ferritin, CRP, and Transferritin Saturation, all from within the last 3 months. He did do his due diligence, it wasn't quite as simple and booking myself in!
No referral needed since he's a private consultant but he is an iron specialist.
The specialist/consultant I spoke with said a ferritin below 30 is considered 'very low iron' and below 15 means you have no iron stores left at all.
I'm just going to put it here in case anyone reads it in the future!
humanbean I'm quite sure you already know this but was interesting to hear what the specialist said.
Also makes sense as to why GP's only treat once you get to 15... 🙄
I think you have to ask why any laboratories have bottom of reference interval (range) as low as 15 - or lower!
While 15 appears to be inside the reference interval of a particular laboratory, some doctors will regard it as adequate.
The NICE Clinical Knowledge Summary for Iron Deficiency says:
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency. However:
• Ferritin levels are difficult to interpret if infection or inflammation is present, as levels can be high even in the presence of iron deficiency.
• Ferritin levels may be less reliable in pregnancy.
Perhaps naively, I assumed below 15 was deficient rather than depleted!
Have to bite my tongue around most people these days for fear of being painted as a crackpot because noone wants to believe the NHS will keep them unwell... Having difficulty convincing a relative that a ferritin of 30 is not normal despite what the Dr is telling them. 🤦🏻♀️
The problem I have with ferritin tests is two-fold - first the effects of inflammation (as mentioned in the NICE CKS), second, the unbelievably wide range of reference intervals! With top of reference interval sometimes being around 150, other times around 300.
Makes it very difficult to know whether a specific ferritin result is, or is not, acceptable.
Hello! I retested beginning of July, roughly 5 weeks after the infusion. Results were:
Ferritin - 205 (13 - 150) Iron - 18.6 (10 - 30)
UIBC - 26.6 (24.2 - 70.1)
TIBC - 45 (41 - 77)
Transferrin saturation - 41 (20 - 55)
I have been making no concerted effort to increase iron consumption to test whether I have a physiological reason for iron loss and to get a 'baseline' for how quickly I lose iron to help figure out how quickly I need to replace it.
I'm due to test again soon as it'll be 12 weeks post transfusion.
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Just had blood tested and asked about iron levels
Why won't the NHS give me an iron infusion?
Low Ferritin & Iron with Hypothyroid
Has anyone had this test?
Please recommend an iron supplement - thanks
