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cdoesc wrote:Saw hematology. She wasnt impressed with ferritin level (9) wants me to continue on my supplements for 3 more months, Then we'll consider infusion therapy. Not sure what to think. Basically sitting in neutral AGAIN.
None of the doctors are aware of this in relation to WED. Please send them some research! I don't have time to look right now, but there are MANY studies that would help them make a better decision about your care. Only you can ask them to do more - it's hard to stand up to them. You may have to ask them the following,
What do you know about ferritin and WED?
Are you familiar with the Johns Hopkins studies?
What do you think my ferritin level should be? (if they say anything over 15 or 20, they don't know anything about this and WED)\\
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Don't be afraid to ask a few pertinent questions to determine if doc at least has an idea of the disease. A point to bear in mind - a young doctor with no WED experience but with a willingness to learn and to accept and work with Foundation publications on treatment etc and cooperate in your best interests can be of more value that a doctor who reckons he knows it all but is entrenched in his own inflexible ways.... unless his ways work.
cdoesc wrote:Thanks for your help and info. Your right I need to start standing up for myself. Their not gonna take me seriously until I do.I
I've had to learn this the hard way. Sometimes it still doesn't work. But, the hematologist really just doesn't know! This is very rare. In a "normal" person (no WED), some labs allow ferritin to be as low as 15 and be OK. We need it to be at least 50, and the closer to 100 the better. They think - hey, take some iron and you'll be up to 15 or 20 in no time and you'll be fine.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
The best approach I've found is to take one or two print-outs of good articles, like the WED Foundation pamphlets or the links Ann's been sending (real medical-journal papers or to summaries by news services specailising in medical issues). Read them to understand as much as you can, don't worry if you don't understand it all, and highlihgt anything that seems relevant to you.
Your doctors eye's will stop at the highlighted parts as s/he flips thru the paper in front of you.
You're not a know-it-all, so no need to fear acting like one, but it's perfectly alright to know about things your dcotor doesn't yet know of. Tell him you have come across some information that seems to be relevant to your situation, and you're wondering if he could check it out and let you know if it would help.
You'll find that you really do have to take care of yourself in this world! Although some doctors are disconcerted by it (I haven't met any of those, thankfully), many will THANK you for bringing the information to their attention, and enjoy the interaction.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.