Reading results of Iron Bloodwork

[Eternityroad]

Hi,
Because my next scheduled appointment with my doctor isn't for two months I decided to order my own ferritin bloodwork. I would appreciate help and suggestions for Iron supplementation based on results.

Iron, TIBC and Ferritin Panel

1. Total Iron: 61 mcg/dL (50-180 desired range)
2. Iron Binding Capacity: 317 mcg/dL (250-425 mcg/dL (calc) desired)
3. Saturation: 19 % (calc) (Desired Range 20-48 % (calc))
4. ferritin: 34 ng/mL (Desired Range 24-380 ng/mL)

1 and 4 are pretty low but still acceptable. 3 is just outside the acceptable range. And 2 is looking very good.

Thanks,

Ken

[stjohnh]

Hi Ken,
The good news is that you qualify for IV Iron infusions per the International Restless Legs Syndrome Study Group guidelines. Now all you have to do is persuade a doc to give you the IV Iron. Injectafer is the preferred iron brand. The lab reports "normal" values based on a healthy population as a whole. The "normal" values are only normal in the sense that a "normal" value provides enough iron to keep a person from being anemic. It is NOT "normal for the whole body." It is not "normal" for a person with RLS.

I have now had 3 sets of IV Iron infusions. Looks like urge-to-move symptoms for me starts with a ferritin about 250, and it takes 10-12 months for my ferritin to drop to that level after the IV Iron infusion. My last ferritin a couple of months ago was a bit over 700.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 83A240A179

[Eternityroad]

Thank you, Holland,
I was wondering if most insurances cover this type of infusion? I checked the Injectefer site and unless my insurance covers most of the cost then I really can't afford it. I am a retired person on a fixed income and their charges are simply out of the question at this stage. Between now and my next appointment with Doc in May I am going to try the iron tablet regimen recommended in the paper on iron which you included in the link. Last month the Dr. put me back on hydrocodone 7.5-325, but only enough for three tabs/day. Not enough so I am supplementing the regimen with Kratom. I had been off of the Hydro for three years and I noticed now that the dose doesn't ward off symptoms as long as it did before.

Ken

[jacwillheal]

Hello

I am trying to explore iron IV infusion but I cannot get any doctor to listen to me. I live in Seattle WA and wonder if anyone here knows of a doctor who does iron infusions. These were my blood results 4 months ago:

Iron Bind.Cap.(TIBC) 271 ug/dL
UIBC 179 ug/dL
Iron, Serum 92 ug/dL
Iron Saturation 34 %
Transferrin 226 mg/dL


I have severe RLS and the repinerole I take seems to only be making it worse. From what I can glean from the studies, my iron saturation levels would suggest I'm a candidate for iron iv.

Any help or insight here is greatly appreciated!

[stjohnh]

Hello

I am trying to explore iron IV infusion but I cannot get any doctor to listen to me. I live in Seattle WA and wonder if anyone here knows of a doctor who does iron infusions. These were my blood results 4 months ago:

Iron Bind.Cap.(TIBC) 271 ug/dL
UIBC 179 ug/dL
Iron, Serum 92 ug/dL
Iron Saturation 34 %
Transferrin 226 mg/dL


I have severe RLS and the repinerole I take seems to only be making it worse. From what I can glean from the studies, my iron saturation levels would suggest I'm a candidate for iron iv.

Any help or insight here is greatly appreciated!

Hi Jackwillheal and welcome to the forum. I'm sorry you are having problems, but glad you found your way here.
The official guidlines say Transferrin saturation should be less than 45% AND ferritin less than 100.
Your Transferrin sat is 92/226x70.9=28.8%, so your transferrin saturation is ok for IV iron. If your ferritin is less than 100, then you meet the lab requirements for IV Iron.

Getting the lab values acceptable is just a part of the problem of actually getting the IV iron. As you have found out, getting a doctor on board is frequently difficult. I would print a copy of the guidlines and take it to your doctor at your next appointment. DO NOT mail or email it to the doc. Face to face has far more impact. If you can't make any progress you can go to one of the Quality care docs for RLS. They are listed on the RLS foundation web site, www.rls.org. Unfortunately, the closest to you are the two in California. The guidlines are at: https://reader.elsevier.com/reader/sd/p ... 83A240A179

[stjohnh]

Thank you, Holland,
I was wondering if most insurances cover this type of infusion? I checked the Injectefer site and unless my insurance covers most of the cost then I really can't afford it

Ken, insurance coverage is difficult for IV Iron for RLS. I got mine covered, but most people end up having to pay out of pocket. Some of the other preparations are less expensive, but also have less good evidence supporting their use. That is not to say that they don't work, just they haven't been studied as much.

[jacwillheal]

Thanks Holland, My ferritin is 143 so I guess I'm not a candidate. But I was surprised to read the post above from EternityRoad who said their levels were at 250 and went to 700 after infusions so maybe I am? I found several Injectfer providers in the Seattle area and was shocked to discover that one of them is. at the hospital where my neurologist works. But I am going to try one of the quality care centers in NoCal. I think it's worth driving down for as this my quality of life is zip at at the moment and I'm not sure how much more I can take. Appreciate you responding back to me so quickly

[jacwillheal]

Sorry, it looks like stjohn's ferritin levels were 250. stjohn, I am curious if I'm reading that correctly since it looks like the guidelines say your levels need to be lower than 100?

[stjohnh]

Sorry, it looks like stjohn's ferritin levels were 250. stjohn, I am curious if I'm reading that correctly since it looks like the guidelines say your levels need to be lower than 100?

You are correct. For the INITIAL IV iron infusion the guidelines require a ferritin below 100. If a person has a good response (remember that only about 1/2 of RLS patients getting IV Iron have good response) to the initial IV Iron, then subsequent infusions are ok as long as the ferritin is below 300. The ferritin for my initial infusion was 90 in Aug 2018, My ferritin tests starting in 2013 up to Aug 2018 were 30, 28, 28, 62, 75, 71 (approx 6-12mo. apart). My ferritin just before my second infusion was 260. Before my IV Iron I took oral iron for 2 years which brought my ferritin up to the 70's.

[jacwillheal]

Thanks Holland.

I'm wondering if anyone here also has had experience or seen a link between MCV and MCHC levels? My MCV is high and my MCHC is low. Has anyone else seen this?

On another note: My neurologist got back to me and said she does not have experience with iron infusion protocols but would ask a hematologist if he/she would be willing to facilitate the process of me getting one. Not a definite but looking more hopeful today!

[ViewsAskew]

Thanks Holland.

On another note: My neurologist got back to me and said she does not have experience with iron infusion protocols but would ask a hematologist if he/she would be willing to facilitate the process of me getting one. Not a definite but looking more hopeful today!

Great news!

[stjohnh]

Thanks Holland.

I'm wondering if anyone here also has had experience or seen a link between MCV and MCHC levels? My MCV is high and my MCHC is low. Has anyone else seen this?

On another note: My neurologist got back to me and said she does not have experience with iron infusion protocols but would ask a hematologist if he/she would be willing to facilitate the process of me getting one. Not a definite but looking more hopeful today!

High MCV is commonly associated with Vit B12 deficiency and less commonly with other blood problems. Most IV iron infusions are ordered by hematologists, because they are the ones that treat more severe iron deficiency anemia that doesn't respond to oral iron. That is how I got mine. My primary doc referred me to the hematologist. I gave the hematolgist the guidelines paper and explained that RLS patients have low brain iron, but (usually) normal blood iron. The hematologist then ordered the IV Iron for me. You can ask the hematologist about the high MCV when you go. Be sure and take a copy of the guidelines to give to the hematologist.

[jacwillheal]

Thanks Holland. Good to know you got yours through a hematologist - at least I'm headed in the right direction. I realize there's probably a 50/50 chance it will work for me but it's worth at least trying. The other day I "woke up" (having never really been to sleep) and started my day after a night of taking 6 different drugs, trying to find relief from my RLS. It only seems to be worsening - I guess due to augmentation. I am ready to try just about anything after 12 years of living with this.

[badnights]

Hi jacwillheal - - hopeful name : ) You mentioned augmentation so you must know something about it; what is your plan for dealing with it?

[Oozz]

Thanks Holland.

I'm wondering if anyone here also has had experience or seen a link between MCV and MCHC levels? My MCV is high and my MCHC is low. Has anyone else seen this?

On another note: My neurologist got back to me and said she does not have experience with iron infusion protocols but would ask a hematologist if he/she would be willing to facilitate the process of me getting one. Not a definite but looking more hopeful today!

High MCV is commonly associated with Vit B12 deficiency and less commonly with other blood problems. Most IV iron infusions are ordered by hematologists, because they are the ones that treat more severe iron deficiency anemia that doesn't respond to oral iron. That is how I got mine. My primary doc referred me to the hematologist. I gave the hematolgist the guidelines paper and explained that RLS patients have low brain iron, but (usually) normal blood iron. The hematologist then ordered the IV Iron for me. You can ask the hematologist about the high MCV when you go. Be sure and take a copy of the guidelines to give to the hematologist.

What about the low MCH? Is that alone indicative of anything?

I’ve read that the MCH metric is not really used clinically, but I’m not sure why.