Iron Infusions

[kirstabelle]

Hi,

I don't tolerate oral iron and so after much battling and several infusions I now have my iron blood test sent every six months directly to the chief haematologist for my region (NHS).
My iron, ferritin and HGB are falling but are not below range and I have argued it out with him that I do not need to be rock bottom before I get an infusion. He refuses to budge.
However having had anaemia on and off over the years I know the signs. I lose cognitive ability, I feel the flutter in my chest, the exhaustion and I see the ghostly pallor.

For the first time ever I have PMI through my work and I have managed to get referred to the Chief Haematologist at the private hospital.

I am going to try and explain to her why I should have infusions before my labs bottom out.
My saturation rate is low and I know I can use this...

Does anyone have any info/help they could give me to strengthen my case?

Many thanks

Kirsten

 

[southernlady]

Tagging @Elizabeth N. since she has to deal with infusions...and manages to get them before they are rock bottom.

 

[Elizabeth N.]

Fortunately for me, but unfortunately for you, I have never yet had to argue this issue with my docs. Both of them (one in NJ, the other in MT) were totally on board with the idea of my having infusions just based on my tanked-out ferritin, even though the other levels were still within normal limits.

They both made noises about oral iron, but I just pointed out that all but a few centimeters of my duodenum had been bypassed for food and that I therefore could not absorb it. I also said that I'd tried several different kinds of oral iron and that they all were murder on my gut...But I think that the non-absorption part is what convinced them.

 

[DianaCox]

It is much MUCH harder to get our ferritin from 12 to 24 than to get it from 24 to 48. We don't absorb orally well at all AND it kills our short guts to boot. Topping our ferritin up to 200+ can keep us going for a much MUCH longer time. And quit being a dick about it - we malabsorb,we're special, and the wisdom of 20+ years of DSers' experience should not be ignored.

 

[kirstabelle]

Well - looks like it has been taken out the stupid Haemo's hands - ferritin is back down to 13 so referral for infusion went in this afternoon.

 

[DianaCox]

I guess that's good, in that you don't have to stress about fighting for it, but I'm sorry your ferritin is so low. FYI, my ferritin got to 12, and as far as I know, I had no symptoms whatsoever, and getting the infusions brought my ferritin up but didn't make me feel any differently - I was really hoping I'd feel like SuperWoman after my infusions - didn't happen.

 

[kirstabelle]

Thanks. My ferritin was lower last time and I have certainly felt a lot worse than I do now but I am seeing the signs. Tiredness and lower cognitive function as well as a ghostly pallor.
In saying that I was deficient in most things a year ago wh

 

[kirstabelle]

Damn edit not working.
End should have said
.....which didn't help!

 

[ProteinSnob]

Will it help that your situation now shows a trend for your ferritin levels to drop like a rock without infusions?

I'm glad that you will finally get the infusions that you need, but how tiresome that the doctors let it get to this point. Boo.

 

[DuodenalSwitchaRoo]

Glad someone is listening. The NHS whilst awesome and a lifesaver, does have some issues. If some of my vits tank I may have to bite the bullet and go private.....if I win the lottery or something!