Got my Iron Results!!

[RLS113]

First the good news. Although uneducated on RLS, my PCP wants to work with me to get a hold of controlling my pain and discomfort. She was very interested in the Algorithm and took it to educate herself on RLS. After telling her that I want to try to get off the Ropinirole and would rather try iron therapy (if I am a candidate), she ordered the labs and I got them back today.

These are the results

Total Iron Binding Capacity. 345 ug/dL
Iron level. 83 ug/dL
Transferrin % Saturation 24%
Ferritin 99.0 ng/mL

So now we have a Telehealth set up next week to review the results and decide course of action!!

Any advice or comments on the results are welcome!

Thanks in advance

[badnights]

The numbers might make it difficult to get an infusion. I am self-taught and not sure of myself - - but your numbers fall within normal ranges except % sat is a touch low (usually 25-35% of the iron-binding sites on transferrin molecules are filled with iron, meaning the other 65-75% is available to move more iron around ... but what exactly it might mean to be slightly low, I am not sure).

People with WED/RLS are said by WED\RLS specialists to need over 75 or even over 100 ng/ml ferritin, but this information hasn't gotten thru to the labs or general practitioners yet, who say anything over 20 is fine. Ferritin is a tricky one, it's an iron-storage molecule, but its concentration in the blood is not necessarily representative of its concentration in any other body tissue, like the brain. Nevertheless, it tends to be low in the blood when there's a shortage somewhere in the body, and in us, the shortage is more than likely in our brains. It also increases in the blood when there's an infection or chronic systemic inflammation in the body, which might mask the normally low ferritin that would result from low brain iron.

Although the iron consensus guidelines (see in my signature link "The 2018 International RLS Study Group consensus guidelines on IRON TREATMENT for WED/RLS") say anyone under 100 is a candidate, they also state that there is no reason someone with ferritin up to 300 might not benefit. Some doctors, however, won't do it unless your ferritin is below 40. And hematologists who aren't familiar with WED/RLS or willing to learn might refuse you no matter what your ferritin is, with that amount of iron in your blood. I hope you have good luck with this. I had an infusion when my ferritin was high 200's, almost 300, and I benefited nicely from it.

If you want real advice on those numbers, try asking Dr Buchfuhrer, who has graciously for decades given of his own personal time to help people like us. He is a WED/RLS clinical specialist (lots of experience treating us, from simple cases to the most refractory). His email is ...hmmm I see it has been changed to somno5586@outlook.com. You can see emails and answers that he posts at the website of the Southern California RLS Support Group, which he is affiliated with. Go to rlshelp.org and scroll down to "RLS PATIENT LETTERS AND MEDICAL REPLIES SECTION".
(Don't be turned off by the Important!! note, I guess he just got tied of emails sloppily written on phones)

Take his reply with you to the appointment.

[RLS113]

Thank you so much. I will do that!

[Stainless]

One doctor who did a video seminar on RLS.org said he would give someone with your numbers (very much like mine) one treatment ( 2 IV sessions ) but not expect it to work. I think he was out of John Hopkins who will not treat out of state patients anyways. Maybe Harvard. My haematologist listened to my whole pitch but said only a university or research docs would perform such a treatment. Obviously he does not know Dr. B or others who do, but probably not in Florida.

Badnights, are you still doing IV treatments and getting good results with such high ferritin numbers?

[badnights]

Hi Stainless, a year late. I don't come here much anymore. I only did the one iron treatment, then covid got in the way, then I signed up for the Gupta Program and the Dynamic Neural Retraining Program (both take advantage of neuroplasticity to re-wire the limbic system and related parts of the brain, based on the theory that CFS, mold and chemical sensitivities, and other similar conditions are caused by the brain being stuck in a fight/flight/freeze response).

Since I've been seeing improvements with these programs, and since so much other stuff got in the way, I haven't gotten another infusion. Last summer was the first time I could have travelled, but I had two weddings and a long-awaited holiday in Mongolia, so I didn't have enough time off left to travel to the US for an iron infusion.

My ferritin went even higher, over 400, so I cut back on my iron, and I'm happy that this time I've been ok with the cutback. This is the 5th or 6th time I've tried to cut back, but the only time I've been able to - - those brain re-training programs are actually working

I said to my doctor, as I discussed the improvements with her, that I couldn't understand how cognitive work could do something like make more iron cross my blood-brain barrier! Sounds like magic! And she said, I know, but it does, I've seen it work in other people. She didn't mean WED/RLS in particular; she has patients who are using brain re-training techniques to heal from other conditions. Cool.

[TimG]

I started on a one iron tablet a day routine when I got my first ferritin reading of 19 several years ago. It has gradually increased to over 100, and has greatly diminished my RLS symptoms.

[Rustsmith]

TimG, that is great news. You are fortunate that you were able to raise your ferritin with just oral iron and that it has helped you RLS. That doesn't work for everyone.