Ferritin Level of 32: Had my Ferritin... - Restless Legs Syn...

Restless Legs Syndrome

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Ferritin Level of 32

cicek profile image
13 Replies

Had my Ferritin Levels checked last week. Results have come back at 32. Two years ago it was 200 and last year it was 90. GP is now going to prescribe iron tablets but due to the fact I have Polycythemia as well, he was a little reluctant. I have a phone appointment with Haematologist in December so will have to ask his advice. I have heard someone on the forum talk about gentle iron. Can anyone explain please?

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cicek
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Butterflysun1 profile image
Butterflysun1

Gentle iron is an iron preparation that can be bought ( actually all types can except IV of course ) which is easier to take.But you definitely should tale nothing until you have discussed with your haematologist as you are in a special situation and I think those with polycythaenia may have to keep their iron stores low to prevent you making so many blood cells. Much as RLS is awful your polycythaenia will have to take precedence.

I feel for you but taking iron may be dangerous for you. Your haematologist will be able to expertly advise

cicek profile image
cicek in reply to Butterflysun1

Thank you. I feel a little between a rock and hard place at the moment with all this going on. The last time I spoke to my GP he said he didn't want to put me on iron due to the polycythemia but this time he had no hesitation in prescribing it. I may just wait until I speak to the Haematologist after Christmas and take his advice. My GP has asked me to speak to him anyway but meanwhile take the iron. I agree with you, as bad as the RLS is at the moment the blood situation is more important. I just need to understand why at every count my Ferritin level is getting lower.

Elffindoe profile image
Elffindoe in reply to cicek

Can't your GP contact your neurologist?

cicek profile image
cicek in reply to Elffindoe

Never seen Neurologist sorry. I am going to speak to the Pharmacist and ask her opinion. Thank you.

Elffindoe profile image
Elffindoe in reply to cicek

Sorry I meant haematologist.

You can ask pharmaist and they're very knowledgeable about medicines. They're not doctors though.

See if your GP will ask your haematologist just be sure.

A gentle iron may be OK even with polycythemia. Iron is not the main issue.

cicek profile image
cicek in reply to Elffindoe

Thanks for your response. I have a telephone appointment with my haematologist on 30th December and my GP suggested I ask his opinion about the iron and then get back to him despite he's told me to start taking it now! The days seem to be gone where one specialist speaks to another. I think I'll leave it now anyway until speaking to my haematologist. I've come this far I don't want to start rocking the boat now.

Elffindoe profile image
Elffindoe in reply to cicek

OK good luck.

DicCarlson profile image
DicCarlson

Gentle iron is a patented formula combining iron with an Amino Acid - ferrous bisglycinate chelate - sold as Ferrochel. It was developed by Albion Minerals (and recently bought by Balchem). The benefit compared to other iron supplements, especially ferrous sulfate is the lack of gastric upset. So, any brand name with ferrous bisglycinate chelate will have the same ingredients. But, as has been advised do talk to your doctor and look at ALL the iron panel results including % saturation, TIBC, etc. More on Ferrochel...

balchem.com/human-nutrition...

cicek profile image
cicek in reply to DicCarlson

Thank you for explaining this to me.

Did you notice your rls symptoms worsening over the time your serum ferritin dropped?

cicek profile image
cicek in reply to involuntarydancer

My symptoms have been getting worse for many weeks now and I assume it was augmentation so been reducing Roprinirole. Now I've had this result it could of course be due to my Ferritin levels. Guess I won't know now as I'll soon have stopped taking the Roprinirole. Glad to be getting off it anyway,. Thank you.

involuntarydancer profile image
involuntarydancer in reply to cicek

Well done for the reduction in ropinerole and your resolve to discontinue. As you are no doubt aware, the advice on here is to reduce very slowly and by very small increments, particularly as you get towards the end. Some people split the pills so that they can make tiny reductions and also make a reduction every other day. Taking it this gradually does seem to result in much less severe symptoms than a more rapid reduction.

cicek profile image
cicek in reply to involuntarydancer

Thank you. I've been reducing by .25mg every two weeks. I have just over a week to go but may cut the last .25mg into half again. Fingers crossed it will all go smoothly as it has been very difficult. By then hopefully the Pregabalin will give me some relief.

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