waiting for ferritin infusion

[Jolee91]

I suffer with low iron and often have anaemia. The problem I am having is that when I have my infusion my ferritin goes up to 163 and then it slowly starts dropping I normally get about 6 months before my levels start dropping that I need regular blood tests I start feeling exhausted but I need to wait until my ferritin drops under 22 At the moment I am at 24 and my red blood count is 125 which is below the 130 marker I am having another blood test on the 27th I am hoping the my level has dropped so I can be referred to the hospital so I can start feeling normal again

[SueJohnson]

Why are they waiting for your ferritin to drop below 22? You should have an iron infusion when it drops below 100, especially when you have anemia. For RLS it needs to be 100 or more. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and print out the section on ferritin and infusions and show to your doctor at Https://mayoclinicproceedings.org/a...

Meanwhile you can take iron. take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. Ask for a new blood test 8 weeks after your iron infusion. For the test stop taking any iron supplements 48 hours including in any multivitamin before the test, fast after midnight and have your test in the morning.

[SueJohnson]

You don't say anything in your profile about RLS. Are you taking any medicines for it? Is it under control?

[Jolee91 in reply to SueJohnson]

Hi Sue

Sorry I should of mentioned I am in the uk. I cannot take oral iron medication because I become ill from taking it. My RLS is ok at the moment I take pregabalin for that and my back. In the he uk my GP say that unless your ferritin is under 22 you can not be referred to the haematologist. In the meantime I am still working full time and feel terrible. I just need some sort of plan going forward because feeling like this also affects my mental state and my sleep.

Thanks for the reply

Lee Dean

[SueJohnson in reply to Jolee91]

Have you told your doctor you can't tolerate iron? This site says if you ferritin is under 50 and you can't tolerate iron that you should get an iron infusion. clinicalguidelines.nhsggc.o...

I can't access the NICE guidelines site since I am in the US but you can. I would check it to see if there really is that limitation.

Have you tried taking iron with food? Liquid iron? Iron patch? Better You Iron Oral Spray?

In what way does it make you ill? Perhaps I could suggest something to counter that.

You could say your RLS is worse and get an iron infusion for that reason as many on this forum have done so without that ferritin limitation.

Can you afford to go private and get an appointment with a hematologist without a referral?

[Munroist]

I suspect your doctors view on infusions is based on iron levels for people without RLS. given that the conventional view is that normal range for ferritin is 16-250 µg/L then no you wouldn’t need an infusion at 22 over it is very close to the bottom end. However, it is generally acce amongst clinicians who are knowledgeable about RLS, that RLS sufferers need ferritin levels well in excess of 100 and even 200. That’s what is indicated in the Mayo Algorithm and I have just had a private consultation with a neurologist who has recommended to my GP that I have an infusion to raise my ferritin to “supranormal” levels even though I’m currently at 171. I’m waiting for my GP to come back to me on that, but I suspect he may find a similar attitude from the haematology department and have to do some explaining to get it arranged. Some people on the forum have managed to get infusions organised by their GP so it’s not impossible but it does seem to be the exception rather than the norm. In your case it feels like you need topping up a lot earlier and specifically when then RLS becomes difficult again.

For reference please also see this recent post on repeated infusions

healthunlocked.com/rlsuk/po...

[Jolee91]

Thanks for your support and information. I am having a blood test in the morning so hopefully my ferritin level would have dropped a little so i can get referred. My GP said at my last appointment he would email the hematologists to see if he could come up with a treatment plan so i don't go through this every time i need topping up with iron. Like i said my ferritin level went up to 163 after two infusions, i felt a lot better. I cannot take liquid or tablet iron because I feel sick, ill, and worse than before. Is it common to have insomnia with anemia?

[SueJohnson in reply to Jolee91]

Yes it is common.

[RLSLearner]

Do infusions need to be organised by a haematologist in the UK? The NHS does seem to make things more difficult than they need to be. I found a private clinic- theironclinic.com/pricing/ but it is 770 pounds! I dont have any association with them but think I might set up iron infusion clinics in the UK!

[Jolee91]

I got referred to the haematologist by my GP, and then got a call from the hospital to say i was on their list for an infusion. I think it was just a paper exercise.