Hello

[missy1462]

Hello everyone,
I found rls.org last night and am thankful to find a group of people who deal with the same struggles I am. I just read a couple of weeks ago about the chance of there being iron issues with RLS. I have been on Requip for several years now and recently read that Requip is one of the drugs that they know has a connection to Alzheimers Disease. I watched my grandfather and MIL suffer from Alzheimer's, and I decided that I'd rather die with RLS than Alzheimer's, so I sent my doc a message and asked if he would do some bloodwork to check my iron and he actually agreed. I got the results for the tests he ran yesterday.
-- Iron, Total. 42.0 mcg/dL. Reference Range (RR) 50.0 - 170.0 mcg/dL
--- Iron Binding Capacity, Total (CALC) 295 mcg/dL. RR 250-450 mcg/dL
--- % Saturation 14.2%. RR 20.0 - 40.0%
---Transferrin 211 mg/dL. RR 180 - 382 mg/dL

I read in one post here that if your Ferritin level was below 75, you should be on oral Iron until the level gets above 100, and it might help RLS issues. My doc did not check my Ferritin (and he's on vacation ((again)) this week), but I was looking back through my past bloodwork, and someone ran a Ferritin on me in 2014 and it was 58 ng/mL then.

I'm absolutely clueless as to what all these above levels actually mean as I have just started trying to figure out this RLS thing. I would appreciate any thoughts and comments concerning my bloodwork and also really appreciate being accepted to the forum.

[stjohnh]

Missy, Welcome to the RLS community.

I am so pleased that the new information about IV Iron treatment is getting out to the RLS sufferers out there, apparently the information is starting to get to the medical community as well, albeit slowly.

The IRLSSG recommendations call for a ferritin<100 and Transferrin saturation<45%.

The formula for %TransfSat is:
Iron/transferrin x 70.9.
For you this would be:
42/211 x70.9 = 14% (as expected, your results showed 14.2 % Saturation, which is actually the % Transferrin Sat, just not clearly labelled by the lab) so assuming your ferritin is still < 100, you should be getting the IV iron.

There is one other requirement, a failed trial of oral iron OR "need for more rapid response than oral iron provides." If you are already on oral iron and it is not working, you are golden. If not taking oral iron, I would argue that you need to get off the Requip ASAP to prevent Alzheimer's (oral iron takes many months to be effective and the failure rate is VERY high).

I would print on paper the IRLSSG guidelines, highlight the algorithm on page 39, and the Dose administration line (fourth line down) of Table 1 on page 31. You want to make it as easy for the doc to figure out if you qualify and what the dose required is. DO NOT email or just use your phone. Use paper and take it with you to the appointment. Doc will MUCH more likely to pay attention to a paper that you personally hand to him (tell doc he/she can keep it), and with the significant parts highlighted (you don't want doc to have to search the whole paper for the actual information needed to prescribe the infusion).

[missy1462]

Thank you so much for the reply and information stjohnh!! I am having a lot of trouble finding these IRLSSG guidelines you are speaking of though. I have hunted and not had any luck. Could you point me in the right direction?

[stjohnh]

Thank you so much for the reply and information stjohnh!! I am having a lot of trouble finding these IRLSSG guidelines you are speaking of though. I have hunted and not had any luck. Could you point me in the right direction?

Try this:
https://www.sciencedirect.com/science/a ... via%3Dihub

[missy1462]

Thank you so much, Holland!!!

[ViewsAskew]

Thank you so much for the reply and information stjohnh!! I am having a lot of trouble finding these IRLSSG guidelines you are speaking of though. I have hunted and not had any luck. Could you point me in the right direction?

Try this:
https://www.sciencedirect.com/science/a ... via%3Dihub

Missy, I took these into a hematologist this week - he approved the infusion. Now, I had had two previously, so that may have been in my favor, but my ferritin is in the 200s now (seems I need it in the high 200s to 300s at least) and he was incredulous at first. This article did it for him. Hopefully you will have similar success.

[missy1462]

Holland, I got it printed out and highlighted the parts you suggested. My doc should be back at work Monday, and I'm sure he will order the Ferritin blood work for me. Whether my doc (who is just a PA) is willing to listen and consider all this or not. If y'all had to make the choice, would you stick with a PA or find a hematologist who is willing to look this over?
Ann, thank you for your reply also. Suggestions for dealing with insurance and getting such as this approved?

[stjohnh]

...If y'all had to make the choice, would you stick with a PA or find a hematologist who is willing to look this over? ...

If the PA is willing to listen and learn, stick with the PA for now. Depending on the type of medical clinic (solo doc, small group, large group) there is a fairly good likelihood that you will be referred to a hematologist anyway. Especially large groups frequently limit IV Iron infusion prescriptions to hematologists only, though there is no legal requirement for this.

[ViewsAskew]

Holland, I got it printed out and highlighted the parts you suggested. My doc should be back at work Monday, and I'm sure he will order the Ferritin blood work for me. Whether my doc (who is just a PA) is willing to listen and consider all this or not. If y'all had to make the choice, would you stick with a PA or find a hematologist who is willing to look this over?
Ann, thank you for your reply also. Suggestions for dealing with insurance and getting such as this approved?

I usually find PAs to listen and be open here in So Cal- could be that some doctors think they know everything (not all of them, but some). I was unable to convince multiple docs in Chicago - I moved to So Cal because Dr. B. was here and I knew he would do it. I have no idea what his office does - they are the ones who convinced the insurance company to pay the first time...but my ferritin was low. This time it is not, so have NO idea what the hematologist did to get them to say yes. Wish I knew more to tell you.

[missy1462]

Hello again,
The results from the tests last week, were these. -
Iron, Total. 42.0 mcg/dL. Reference Range (RR) 50.0 - 170.0 mcg/dL
--- Iron Binding Capacity, Total (CALC) 295 mcg/dL. RR 250-450 mcg/dL
--- % Saturation 14.2%. RR 20.0 - 40.0%
---Transferrin 211 mg/dL. RR 180 - 382 mg/dL

I sent him a message thru the patient portal with this.....
According to the Restless Leg Foundation, if a person has a Ferritin level that is below 75, and they also have RLS, they should supplement with IV Iron until the Ferritin is in the 100 - 300 range. Studies have shown this to have lessened the symptoms and helped many patients with this. The problem is not with body iron levels, but with a brain iron deficiency. Studies have shown that lower ferritin is associated with increased rls severity. I have printed out the guidelines from the International RLS Study Group made up from several Neuro and Sleep Disorder departments from some of the top universities in the US and internationally for you if you would consider looking it over.
In 2014, my ferritin was 58. Would you order a ferritin test and see what it is now?
What did you think about the iron study results from the other Friday?

His reply to me? --- "Your iron is low and need to make sure you are doing supplements of at least 325mg"

I asked again about the ferritin and yesterday he replied saying "Your ferritin is 87 so oral iron would be the treatment for now. Make sure you take vitamin C with the iron to help it absorb."

What do ya'll think I should do now? Just start taking oral iron, and if so, what kind? I'd rather take the liquid if possible (not that I honestly know anything about anything...) but I don't even know how to convert the dosage he's saying over to a liquid. I'd certainly appreciate anyone's input. I thought about trying to see a hematologist but don't think my doc would agree to send me a referral now .....

[Rustsmith]

Missy, the guidelines recommend starting with oral iron for a while since it is "safer" and less expensive. With a ferritin level of 87, it probably won't help, but it might.

As for dosage, the 325mg that you doctor mentioned refers to the common size for iron sulfate pills. The iron content in that is 65mg. So, if you want to use a liquid, you need to look at the bottle and find out how much liquid you would need in order to get the equivalent of 65mg of iron.

As for the supplement, the one thing that you did not mention whether your doctor told you to do was that iron supplements need to be taken on an empty stomach. That means 2 hrs after a normal meal and 1 hr before the next one. You should also avoid taking a thyroid med, a calcium supplement a magnesium supplement or even an antacid like TUMS at the same time. That is because all of these interfere with the adsorption of the iron so that you get zero benefit.

[missy1462]

Thank you so much for your help, Steve. I had no clue how to convert that 325 mg over to liquid. Also, my doctor did not tell me how/when to take the medicine, which doesn't surprise me in the least. I had it on my mind that I had read somewhere about needing to take Vitamin C with the iron for better absorption. Would y'all suggest doing that? I am so glad I found this site and for all the help I have received. Since reading on here, I am wondering if this low iron also isn't the reason why I've been dealing with a lot more than normal, hair loss. Going to start looking for another doctor also as he has frustrated me to no end lately....

[Rustsmith]

Yes, you need to take Vitamin C if you are taking iron sulfate pills. For the liquid, you need to read the label about the type of iron or if the liquid already contains something like Vitamin C.

[missy1462]

OMG, I had no clue that there are "different" types of iron to have to choose from. (ferric ammonium citrate, iron glycinate chelate, ferrous sulfate, glycinate taste free albion, ferric pyrophosphate...... How do I choose?)

I am going to post some links and wonder if someone would look at them and give me a suggestion as to which liquid iron you would buy if you were me? According to Steve (post above), I would need to get the equivalent of 65 mg of iron. Thank y'all in advance!!!!!

https://www.amazon.com/Ionic-Liquid-Iro ... way&sr=8-9

https://www.amazon.com/Best-Nest-Supple ... op?ie=UTF8

https://www.amazon.com/Pure-Encapsulati ... ay&sr=8-23

https://www.amazon.com/S-S-S-Tonic-Liqu ... way&sr=8-4

I liked this but it has 5 carbs per serving and I am on a low carb way of eaeting .... https://www.amazon.com/Floradix-Vitamin ... ay&sr=8-21

I will make sure I take Vitamin C with it, Steve. Thank you!!

Thanks again everyone!!!

[Rustsmith]

Missy, the label on each tells you the amount of iron per "serving". Most of these contain 15mg and you need 65, so you end up taking quite a bit and that would consume the bottle fairly quickly. The SSS product contains 100mg/dose, which is good. The catch is that their dose is 45ml and the bottle contains 300, so a bottle will last you for one week. This product also contains alcohol at a concentration of wine, so just be warned if that is an issue.

I don't remember on the Ionic Liquid or Pure products, but the Best Nest and SSS products either are a form of iron that does not require Vitamin C or else the product contains citric acid, which will serve the same purpose.

I thought several of the comment on the product that has chocolate flavoring rather funny. One said that it tastes like blood! Another said that it would work well in chocolate milk. Mixing it with milk will prevent any adsorption of the iron. Great for getting a child to take it, but doing that is a total waste of money.