The outcome of my infusion, and a question

[Desperate100]

On 3 February 23 I had an iron infusion (at a private clinic), and I have finally been able to get a blood test (on the NHS) to see what my serum ferritin and transferrin levels are now.

My serum ferritin level has increased from 50.0 to 406.7. My transferrin level is down from 2.26 to 1.74. I was rather confused by these results!

I did not intend to start reducing my Gabapentin dosage until I got results back that showed I was up to the appropriate levels. As it happened, I went away in mid March with insufficient pills to keep up the 600mg dosage for the 3 nights we were away, and so for those night I went down to 500mg. I suffered no ill effects, so a week later I went down to 400 mg. Again, a week later I reduced it to 300 mg, still with no return of restless legs, However, when I tried to reduce to 200mg the following week, the restlessness was very bad indeed, keeping me up until 4 am.

So I wrote to the consultant who gave me the infusion for his advice as to what I should do next, as I really would like to get off the Gabapentin, and all my GP has said is that I'm now 'normal'!

This is what my consultant replied; "Your results are perfect - nice Ferritin levels so you have good stores of iron, please repeat in a year (and ignore the transferrin level)." He went on to say that he was sorry to hear that I still had restless legs when I tried to decrease the gabapentin further, and suggested that I stay on the reduced dose for a bit longer then try to reduce it further slowly.

What I puzzled to know is this: why can my transferrin levels now be ignored??

[SueJohnson]

Your transferrin levels normally go down when your ferritin goes up. At 1,74 it is a little below normal but I wouldn't worry about it. Especially since your doctor said not to.

[Desperate100 in reply to SueJohnson]

Thanks, Sue.

[ChrisColumbus]

As with ferritin, there are variations in what labs and medics consider as 'normal' for transferrin. While a lab I've seen quotes 2.45 - 3.7g/L for women, an NHS Trust here gives Female 1.9 - 3.8 g/L, and another 1.8 - 3.3 g/L. By this reckoning 1.74 is only marginally low.

[ChrisColumbus in reply to ChrisColumbus]

And great that the infusion worked so well for your ferritin, and that your consultant seems clued up!

[Desperate100 in reply to ChrisColumbus]

Thanks, Chris.

[Kakally]

Hi ‘Desperate 100’, That sounds pretty good. A really good response to your iron infusion. The fact that your RLS has returned at a low dose is perhaps not surprising as iv iron doesn’t always remove symptoms completely requiring no medication, but it’s great to at least be on a much lower dose. Though it is of course possible that you might be able to reduce further in a few weeks time. I’m wondering if you feel able to say the name of your consultant and the hospital. All the very best to you and your family xx

[Desperate100]

If anybody is wondering, I saw Dr Andrew Klein at the Nuffield private hospital on Trumpington Road in Cambridge. He can be emailed at [e-mail]

I don't have private health insurance and that may have affected the price. But it was cheaper than the London Clinic I enquired at quoted, and was actually quite a pleasant experience!

[Kakally in reply to Desperate100]

thank you. I will write to him…..😃🤗🥰👏🤞🤞🤞

[Drls]

hello - I am currently trying to get a private iron transfusion via a Nuffield hospital in Warwickshire - did you get it done actually at the hospital?

I am waiting for my blood results as we speak - my last blood test was a ferritin level of 73 last year. My legs are terrible despite being on pregabalin and ocycofobe - I am trying to get them to a manageable level before my dsughters wedding in 8 weeks. I am also trying to access bruprenorphine at the moment.

How much was the transfusion itself?

I feel hopeful that you have managed to access on his this route and that it helped - such a massive drop in the garbepentin should have caused extreme withdrawal and it didn’t d that’s very impressive !

Thanks

[Desperate100 in reply to Drls]

Hi DRLsYes, I had the infusion at the actual hospital. It cost £830, all in (including the consultation.) I think it might have been more expensive if I'd had private insurance.

[Drls in reply to Desperate100]

thank you - im hoping they can do that for me - best wishes and good luck with everything, Dawn

[Truthsword]

I'm not completely versed on feretin.....but...I do know a little about gabapentin. I withdrew we from requip last winter with the help of gabapentin and opiods. I went off tramadol then off gabapentin all but 100 mg. I'm currently trying to go off that as it gives me tremendous backache and morning groggynes. Glutamine is a contributing factor to RLS so I try to limit soy sauce, mushrooms, nightshades....and sugar as well.

[Desperate100 in reply to Truthsword]

How much of a problem is your RLS now, Truthsword?