topic Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome in Wellness

Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Wed, 12 Apr 2023 14:22:14 GMT

I can't remember who recommended getting your Ferritin levels checked if you have restless legs but I am so glad that I read your post and I asked my doctor to perform the test at my last visit. She said that most of the time when she does the test Ferritin levels are OK. She did order it and mine came back low, a 12, so she prescribed an iron supplement.

When I read all of the symptoms of having low Feritin levels I was surprised as I have many of the symptoms listed... chronic headaches, leg pain, dizziness, tiredness, ringing in your ears, unexplained fatigue as well as others that I don't have. I also read that left untreated it can lead to heart failure... pretty scary.

Thanks again! I've been taking EzFe 200 for a week and hope it raises my levels quickly!

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Icegoddess — Wed, 12 Apr 2023 14:31:11 GMT

Years ago, when I was a teen/young adult, my doctor prescribed iron supplements. I was not a fan. I felt hungry all the time. I knew I wasn't really hungry, but that pang was still there. Hope it works for you though.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Wed, 12 Apr 2023 14:41:49 GMT

@Icegoddess

Thank you! She is going to check my level again in 3 months. So far the iron supplement hasn't made me feel hungry but does make me a little nauseous!

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

IMW — Wed, 12 Apr 2023 15:03:30 GMT

Magnesium Citrate also helps restless legs. I've needed infusions of ferritin every 9-12 weeks for past 6 years.

I have blood vessels that bleed in lower intestine.

Hope supplement helps you feel better very soon.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Wed, 12 Apr 2023 15:11:51 GMT

@IMW

Thanks for the magnesium recommendation... I'm sorry that you have to have the infusions so often but it's a blessing that you can to help your Ferritin level..

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

IMW — Wed, 12 Apr 2023 15:12:33 GMT

Thank you

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

hckynutjohn — Wed, 12 Apr 2023 20:24:08 GMT

@Tennessee Vol wrote:
I can't remember who recommended getting your Ferritin levels checked if you have restless legs but I am so glad that I read your post and I asked my doctor to perform the test at my last visit. She said that most of the time when she does the test Ferritin levels are OK. She did order it and mine came back low, a 12, so she prescribed an iron supplement.

When I read all of the symptoms of having low Feritin levels I was surprised as I have many of the symptoms listed... chronic headaches, leg pain, dizziness, tiredness, ringing in your ears, unexplained fatigue as well as others that I don't have. I also read that left untreated it can lead to heart failure... pretty scary.

Thanks again! I've been taking EzFe 200 for a week and hope it raises my levels quickly!

@Tennessee Vol

Glad to hear this blood test helped you with your restless leg issue. I might have commented on Ferritin, but I am sure someone experiencing your problems, suggested the Ferritin Iron blood test.

In some patients, a low Hemoglobin number, at times, might indicate low Ferritin. Low Hemoglobin can cause some, or all the symptoms you described. In the hospital with my Colon Bleeds, I was having Blood Draws for Hemoglobin, every 6 hours. If low! Blood Transfusions.

After my bleeding Colon loss of so much blood(130+ blood transfusions), I was getting my Ferritin levels checked every month. For me, when it was/is low, I go into the hospital for an Iron Infusion, similar to blood transfusion, but takes longer and has higher risks of Anaphylaxis, which can immediately be life threatening.

I still get my Ferritin checked every 6 months, and if it drops below 30, I get an Iron Infusion. My hospital has to send this out, so I usually don't get the number until the next day. If low, my Hematologist sets up my Iron Infusion.

Hopefully with your regimen, your numbers will go up, and alleviate your problems.

hckynut(john)🥅🏒 🇺🇸

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Wed, 12 Apr 2023 22:12:49 GMT

@hckynutjohn

Thank you! I'm sorry that you had/have to deal with a bleeding colon and the transfusions. But it sounds like you have a plan in place to stay on top of it.

I enjoy reading your informative posts...

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tinkrbl44 — Thu, 13 Apr 2023 06:07:47 GMT

Interesting comments. Any time I took an iron supplement it constipated me. No fun.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Mj12 — Thu, 13 Apr 2023 17:19:25 GMT

@Tennessee Vol that is great your doctor finally checked it! So many doctors don't even check it or know what results mean.

IMO ferritin of 12 is really low. I get infusions at 20 or below, so if you don't get relief soon I would ask for a referral to a hematologist who can do infusions. Good luck!

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

hckynutjohn — Thu, 13 Apr 2023 17:28:47 GMT

@Tinkrbl44 wrote:
Interesting comments. Any time I took an iron supplement it constipated me. No fun.

@Tinkrbl44

Iron pills aren't the answer for me when my Ferritin level drops. It's been awhile since I have needed an Infusion, so maybe after 15 years, those levels have finally stabilized a little more for me.

Never had any Gastro issues from the Infusions. I did have 1 episode of Full Anaphylaxis. Fortunately I was still at the hospital, or I wouldn't not have survived.
S**t happens, and in our cases! I'll pick the constipation. =^..^=

hckynut 🇺🇸

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

hckynutjohn — Thu, 13 Apr 2023 18:26:02 GMT

@Mj12 wrote:
@Tennessee Vol that is great your doctor finally checked it! So many doctors don't even check it or know what results mean.

IMO ferritin of 12 is really low. I get infusions at 20 or below, so if you don't get relief soon I would ask for a referral to a hematologist who can do infusions. Good luck!

@Mj12

Very good information in your post. A reading of 12 is very low. When mine gets under 30, I need an Infusion. I realize my situation is different than many others, but low is still low. With a reading of 12, I am surprised her Hemoglobin reading was not low.

My Hemoglobin readings did not always mean I needed an Iron Infusion, but if my Hemoglobin was below the double digits, I always need(ed) an Infusion.

I would add to your suggestion of seeing a Hematologist, to see one that goes deeper into a patients blood readings. I found out after the issue I mentioned in my other post, there are 5 or more different types of Iron used in Infusions.

My Hematologist changed the type of Iron used in mine, and also cut the amount of my Infusion in half. So instead of 1 Infusion(4-6 hours), I had to go the back the next week, for the other half. Again the same 4-6 hours. They do tests prior to the Infusion that usually takes close to an hour.

hckynut 🇺🇸

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Pink123 — Thu, 13 Apr 2023 19:07:24 GMT

@Tennessee Vol It's confusing and puzzling at best.

My hemoglobin readings l have been in the normal range but I have very low ferritin. It hangs around 18 or sometimes a little less.

I do have a hematologist. It's hard to figure out but the conclusion of my low ferritin is the lack of iron absorption and that's because of the heavy dose of prilosec I need to take for Barrett's Esophogaus. It coat's the stomach and so nutrients are harder to get through into the system.

I don't have many symptoms other than I sleep more and dont have quite as much energy as people I know around me.

I won't take the iron infusions. However as someonelse pointed out there are other options today. When I was in the hospital for 45 days in 2021 for a twisted small bowel, then sepsis came due to perforation during surgery and a huge abcess covering entire stomach area, my hemoglobin was extremely low and almost at transfusion number. A kidney specialist came in and shot in my IV a huge amount of dark green liquid which was the color of seaweed green.

I had no side effects and my numbers jumped immediately. I think I had one ore before I left the hospital. I wish I could tell you the name but it' was amazing with no side effects. The hematologist will know. I just moved and need to find a new one. I will inquire about it then.

I've also had a series of vitamin B injections but that didn't jump my ferritin numbers at all. I live with my low number.

Best of luck to you.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Thu, 13 Apr 2023 22:08:34 GMT

@Mj12 wrote:
@Tennessee Vol that is great your doctor finally checked it! So many doctors don't even check it or know what results mean.

IMO ferritin of 12 is really low. I get infusions at 20 or below, so if you don't get relief soon I would ask for a referral to a hematologist who can do infusions. Good luck!

@Mj12

Thanks for the recommendation.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Thu, 13 Apr 2023 22:14:01 GMT

@Pink123

It is confusing... my doctor didn't try to determine why my Ferritin was so low she just put me on EzFe 200.

You really went through a hard time in 2021... I'm glad you are feeling better now.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

hckynutjohn — Fri, 14 Apr 2023 00:39:19 GMT

@Pink123

For my Barrett's, I have been taking Nexium, 40mg twice a day now it's generic(don't remember how to spell it), for about 22 years.

Never had low Ferritin until the start of my Colon Bleeding, and several Gastro Doctors, unable to find the bleed. The 130+ Blood Transfusions, and around 30 Iron Infusions, were because I became Anemic over all those years.

Because of my 2 heart attacks, my Cardiologist did not want my Hemoglobin to drop under 10. My Hematologist said said under 9. There were times it was bleeding so much, those numbers were under 7. Talk about walking dead!

What's with "I won't take Infusions", if you care to answer.

What was really confusing to me was the 7+ years I was on Coumadin/Warfarin. Most people I knew that were taking it were getting their Blood Draws once a month.

Over those 7+ years, there was not a week(not month) where I did not get my Blood Draws 3 times. There were many weeks I had them all 7 days. So many draws my Right Arm has scar tissue, and the needle will not go through there anymore. All my Blood Draws now are in my Left Arm.

hckynut 🇺🇸

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

NickNack — Fri, 14 Apr 2023 15:37:28 GMT

@Tennessee Vol I hope your doctor did a complete iron panel and didn't just test your Ferritin level. A level of 12 is extremely low and usually requires iron infusions. For RLS your levels should be higher than most people's. Your Ferritin level should be 100.

Do a Google search for "Mayo Clinic Updated Restless Leg Syndrome Algorhithm." I printed that for my doctor and highlighted the information about the recommendations for the different iron levels. She was very receptive to the information. She ordered iron infusions for me that worked well.

I also take gabapentin and .25 mg. of ropinirole for RLS. Often getting your iron levels up doesn't take care of the RLS. I hope you get some relief.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Tennessee Vol — Fri, 14 Apr 2023 17:39:24 GMT

@NickNack

She only checked my Ferritin level... thanks for referring me to the Mayo Clinic article, I'll go read it now.

I take gabapentin as well as 1 mg of ropinerole twice a day but sometime even these don't help completely. I hope that one day I can stop taking them.

I read that it could take 3 to 4 weeks for me to see some relief by taking the iron supplement so we shall see. I don't have another appointment with my doctor until September but she wants to check my Ferritin again in 3 months. If I don't start feeling some progress in a month I'll go to see her again and take the Mayo Clinic article. Thank you so much!

Everyone who has responded to me has been so helpful and I really appreciate it!

@hckynutjohn @Pink123

I also have Gerd and currently take 40 mg of Omeprazole twice a day. I guess I need to speak with my Gastroenterologist

to see if I should change the dosage he prescribed. It gets so complicated!

In addition, I was diagnosed with Afib 9 days after I caught Covid last year, I went to the ER thinking I was having a heart attack but I was in Afib. They were able to get me back into rhythm with medicine through an IV, twice. So now I take a beta blocker and Eliquis.

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

hckynutjohn — Fri, 14 Apr 2023 18:09:46 GMT

@Tennessee Vol wrote:
@NickNack

She only checked my Ferritin level... thanks for referring me to the Mayo Clinic article, I'll go read it now.

I take gabapentin as well as 1 mg of ropinerole twice a day but sometime even these don't help completely. I hope that one day I can stop taking them.

I read that it could take 3 to 4 weeks for me to see some relief by taking the iron supplement so we shall see. I don't have another appointment with my doctor until September but she wants to check my Ferritin again in 3 months. If I don't start feeling some progress in a month I'll go to see her again and take the Mayo Clinic article. Thank you so much!

Everyone who has responded to me has been so helpful and I really appreciate it!

@hckynutjohn @Pink123

I also have Gerd and currently take 40 mg of Omeprazole twice a day. I guess I need to speak with my Gastroenterologist
to see if I should change the dosage he prescribed. It gets so complicated!

**************************************
In addition, I was diagnosed with Afib 9 days after I caught Covid last year, I went to the ER thinking I was having a heart attack but I was in Afib. They were able to get me back into rhythm with medicine through an IV, twice. So now I take a
beta blocker and Eliquis.

@Tennessee Vol

If your doctor suggests an Iron Infusion for you, make sure it is known you are taking Eliquis for your Afib.

When I was on Coumadin/Warfarin, I had to be off of it for a minimum of 4 days, before they would do my Iron Infusions. That applied to all their patients on any Blood Thinner, except Lovenox.

For Lovenox it was only, at most 2 days, and then they would draw blood to check my INR/ProTime readings. Was an extra caution because my Hematologist considers an Iron Infusion, to be an Invasive Procedure. Blood Transfusions they do not.

Glad the ER was able to get your heart back in Sinus Rhythm without doing a Cardioversion.

I never have never had Afib or Aflutter, but had the 2 Heart Attacks. Unfortunately the *×@$¿ shot #2 put me back into Congestive Heart Failure(CHF), which pretty much has changed much of my present life.

Hope things go well and get simpler for you.

hckynut 🇺🇸

Re: Thank you to the Person who recommended a Ferritin Test for Restless Leg Syndrome

Pink123 — Fri, 14 Apr 2023 20:06:57 GMT

Yes @Tennessee Vol ask your gastro about the GERD supplements and it hindering iron absorbtion. Tell him you have heard it direct from someone who visits a hematologist. That is the conclusion we came up with.

I think when my reflux gets bad there also is a little bleeding from my tummy. However, My hemoglobin stays above 13.