Ferritin level....still low

[AnneJende]

Booo! My ferritin level is still so low. I increased my oral vitamin for a month before the second level and only 2 days with the patch. Still have hope for that. I've heard Johns Hopkins does transfusions. Anyone else have information on transfusions ?

[Joolsg]

That is really low. How about asking for a transfusion. With such a low level, I'm sure you would be given one and would really benefit from it.

jools

[AnneJende in reply to Joolsg]

Transfusions! Yes. That's what I meant not injections.

Last time I was there all she said was, "Make sure you don't donate any blood,"!! Seriously!

First of all I'm on a million meds and second of all...well, just, REALLY!😳

[Bkc1777 in reply to AnneJende]

You see I donate blood every 3 months ! I mentioned to my doctor but he wasn't concerned! I think I shouldn't donate in my case but like to do my duty too.

B.

[Hidden in reply to AnneJende]

Its not transfusions. its iron infusions, for getting your ferritin level up.

[AnneJende in reply to Hidden]

So between the two of us we almost had it! Infusions! Reading up on them right now. I think quite a few of my maladies could " cured" by them!

[mwsteele]

Omg...mine is 427!!!

[AnneJende in reply to mwsteele]

Wow! Just naturally?

[mwsteele in reply to AnneJende]

Natural, wow is what I said when I got the result too!!

[AnneJende in reply to mwsteele]

Maybe you could share?! 😊

[mwsteele in reply to AnneJende]

It seems I have enough for quite a few in need!!! Trade for it tho...I'm in need of Vitamin b12...

[AnneJende in reply to mwsteele]

Me too! I take an excellent sublingual B12. Seems to keep me in line!

[mwsteele in reply to AnneJende]

Sadly I'm getting the needle...yay

[AnneJende in reply to mwsteele]

Sorry. Think that's where it I'm headed with my ferritin also. I got an actual letter from my dr. Usually they just send all info via email!

A little thankful that someone is finally looking at it after all these years!

Good luck with your needle. Think happy thoughts ?😬

[mwsteele in reply to AnneJende]

I try, but I'm a wimp...

[AnneJende in reply to mwsteele]

Haha!ha! It'll hurt less than the frustration of rls!

[mwsteele in reply to AnneJende]

The RLS has calmed down quite significantly, I think the Ropinirole is finally working...my biggest problem is now lack of sleep.

[AnneJende in reply to mwsteele]

I guess I remember that now from one of your posts.

Do you nap during the day? Maybe try, I know it's hard, to give that up?

The others gave you a lot to f great ideas too if I remember correctly. I'm afraid they are more knowledge than I .

[mwsteele in reply to AnneJende]

I had a bout of afternoon-narcolepsy, but even that has passed now....at least then my body was catching up!! I'll get it sorted eventually, I hope!

[AnneJende in reply to mwsteele]

You will! It takes time to get used to new meds. I've learned that throughout my life. It seems like forever when you're going through it but so worth it when you get to the end of the tunnel! Hang in there!

[DicCarlson]

Please bear in mind that this is not just a simple component that you are perhaps deficient in. Iron is bound to a protein and as such called Ferritin. Read much more on Wikipedia and also the Iron saturation level. Couple this with brain biochemistry - and RLS - and it becomes a real complex process. And again I wonder what is the real cause of any deficiency? en.wikipedia.org/wiki/Trans...

[AnneJende in reply to DicCarlson]

Yes. I am what my neurologist calls a "neurological anomaly "

additionally I had gastric bypass surgery 10 years ago. All of my neurological issues require meds which drain my system of an already low level of ferritin.

It is very difficult for me to eat enough iron rich foods for my body to use them because I had the Roux en Y surgery which literally bypasses the stomach and goes thru intestines. They now make a gastric sleeve of the stomach so absorption of vitamins is much more feesible.

The good news, glass half full, is that since I have no other family members with rls that it may indeed be the result of my ferritin level. Now to get it raised.

[marsha2306]

Yes, I see Dr. Christopher Early at Hopkins. My ferritin level was 70. I had an iron infusion on March 10. Going for blood work this week and he will let me know if I can taper off the gabapentin that I've been taking since October.

[AnneJende in reply to marsha2306]

That's awesome. My neurologist increased my gabapentin (Neurontin) which I already take for epilepsy and I am hopeful for the iron infusion.

You're so fortunate to see Dr. Early. I am at the Marshfield Clinic which gets most of its staff from Mayo and is considered the step before Mayo in the Midwest.

Did you only need 1 infusion?

[involuntarydancer in reply to marsha2306]

I am super curious to hear how you get on, Grammie. I thought of you as soon as I read the OP's question. I really hope the blood test brings good news and translates into greatly improved symptoms.

[Grammieof4]

I won't know anything for sure until my blood work next week is done, but I believe Dr. Early said it lasts about 8-9 months.

[involuntarydancer]

That is amongst the lowest ferritin levels I have heard of, AJ. You seem like a prime contender for an infusion. Wouldn't it be wonderful if that sorted your rls problems? Or even helped them. I have read recently that it is optimal not to take oral iron supplements every day but rather every other day as the body is more likely to absorb them that way. Haven't verified this by reference to any studies but I changed my regime on strength of it and at last test my levels had gone from 74 to about 135 in about 8 weeks (can't remember the exact figures). I find my levels start to drop quite quickly if I don't keep up the supplementation - I believe that this is a characteristic of some forms of rls (I think I read this on the Johns Hopkins site).

[AnneJende in reply to involuntarydancer]

What's truly surprising is how many years I've had this low level and it wasn't mentioned to me aside from the year after my gastric bypass where it was watched closely.

I'm honestly very hopeful that this is the problem and even more hopeful that this is the route she's aiming for or I will move to Mayo Clinic.

I also read that on the Johns Hopkins sight I'll have to look at it again.