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Wow, I am having upper and lower GI testing tomorrow for this very symptom. My Ferritin Level is at 6 - very low. They are checking for possible bleeding in GI as the cause. I have been taking Hema-Plex with elemental iron for a few weeks. No RLS though. I was diagnosed with moderate apnea and am waiting for apt with DME for a machine. I have been wondering if these things could be related somehow. What a helpful forum!!! Thank you everyone for posting!!!

I had a very low Ferritin level 2 yrs ago, I was on a high dosage of anti-inflammatory drugs - Celebrex and an older drug Salsalate. It seems the combo of these drugs, along with some others I was taking had caused mild to moderate Kidney failure, hence the low Ferritin level. If you dr hasn't yet checked this and you take ANY anti-inflammatory drugs, I would ask to have kidney function checked. I can no longer take non-steroidal anti-inflammatory drugs (know as NSAIDS),to prevent further damage. My stage of damage is a 3,so I have to be careful the rest of my life. Stage 5 is dialysis.

This may be an obscure case, but its always worth having this checked out. I never even thought I could have something like this, on top of the rest that is wrong with me. It hit me like a 'what now!", but if my Rheumatologist had been paying attention, this might not have happened. I fired that Rheumy & my new Rheumy said I should not have been on that combo, it overloads kidneys, hence causing damage, hence in my case the red flag was my Ferritin level. Hope this is NOT your problem, but hope you get this checked, just in case.
Jen

I just had extensive blood work done as part of a yearly physical by my GP & they did not test for ferritin.

Why would that not be done when extensive blood work is performed?

I do have RLS & take medication for it.
But the blood work was not ordered by my Sleep Doctor.
And, I didn't think of asking my GP to also specifically test for ferritin.

Don't really think I have low ferritin - even with RLS, because I never did in the past.
But, it sure wouldn't hurt to check it sometimes.

I just had extensive blood work done as part of a yearly physical by my GP & they did not test for ferritin.

Stu, I had a similar experience. The GP did test for ferritin but he checked off a level of 22 as OK. He was unaware of the recommendation for RLS patients to maintain a minimum of 50. Thanks again to deltadave for pointing this out to me.

VVV wrote:

I just had extensive blood work done as part of a yearly physical by my GP & they did not test for ferritin.

Stu, I had a similar experience. The GP did test for ferritin but he checked off a level of 22 as OK. He was unaware of the recommendation for RLS patients to maintain a minimum of 50. Thanks again to deltadave for pointing this out to me.

I always get a copy of the entire blood work results (2 pages in this case) & Ferritin was not one of the NUMEROUS things they tested for.

Bump for walking coma

jencat824 wrote:I had a very low Ferritin level 2 yrs ago, I was on a high dosage of anti-inflammatory drugs - Celebrex and an older drug Salsalate. It seems the combo of these drugs, along with some others I was taking had caused mild to moderate Kidney failure, hence the low Ferritin level. If you dr hasn't yet checked this and you take ANY anti-inflammatory drugs, I would ask to have kidney function checked. I can no longer take non-steroidal anti-inflammatory drugs (know as NSAIDS),to prevent further damage. My stage of damage is a 3,so I have to be careful the rest of my life. Stage 5 is dialysis.

This may be an obscure case, but its always worth having this checked out. I never even thought I could have something like this, on top of the rest that is wrong with me. It hit me like a 'what now!", but if my Rheumatologist had been paying attention, this might not have happened. I fired that Rheumy & my new Rheumy said I should not have been on that combo, it overloads kidneys, hence causing damage, hence in my case the red flag was my Ferritin level. Hope this is NOT your problem, but hope you get this checked, just in case.
Jen

Jencat I severly damaged my kidneys with NSAIDS and Celebrex I'm at stage 4 severe kidney disease , I'm anemic and experience RLS when your kidneys are damaged they are unable to help the body absorb iron thus the RLS I do take a special slow release iron and this helps some,

I know a young man who was otherwise healthy who was on NSAIDS due to sports injuries, and it wasn't until he was in kidney failure and facing dialysis that they realized what was happening. Fortunately for him it was not too late to save his kidneys.

I'm curious if anyone might know the answer to this question... Since kidney function can affect ferritin levels, could long term use (25+ years) of diuretics possibly affect ferritin levels?

Alright, this may really be a Stupid Question - but if you are taking something that may affect your kidneys, isn't it standard procedure to do recurring periodic tests to determine that it is not negatively affecting your kidneys?

I guess I am having a hard time understanding how someone's kidneys could be damaged to the point some report here IF those tests were routinely done. I am NOT doubting anyone, just would like to learn more about this.

OR, am I just missing something basic?

Please enlighten me.

StuUnderPressure wrote: ...if you are taking something that may affect your kidneys, isn't it standard procedure to do recurring periodic tests to determine that it is not negatively affecting your kidneys? I guess I am having a hard time understanding how someone's kidneys could be damaged to the point some report here IF those tests were routinely done...

Good question. Can't say I know the answer to that, but one person I know was affected by the OTC drug Advil. Their doctor was not involved until they became very ill. Also, kidney damage as a side affect may be a remote possibility of a medication, not something often seen. In these cases, I doubt routine testing is being done on the masses on the med.

The question in my mind is how much the routine tests look at. For comparison sake, let's look at checking iron. A routine test may show a normnal H&H but only deeper iron studies can reveal a low ferritin level. So, with the kidneys, how much do routine tests see, and can one have fairly normal routine tests but not reveal a specific affect that would require more intricate or targeted testing to be seen? What exactly does routine kidney function testing entail? Anybody know?

131 wrote:Last time my wife had her serum ferritin level checked it was 42, she can't take Iron supplements as it makes her feel ill. She was taking 250mg of sifrol (Pramipexole) at night, which greatly reduced symptoms, but caused some negative obsessive behaviour. Reducing the sifrol to 125mg minimised the obsessive behaviour but also increased the incidence of RLS.

There are many alternative ways to get your wife's Ferritin levels up. She is right that typical iron pills can cause stomach upset (constipation is also not uncommon). But because elevating her Ferritin could be a significant help to her (as people earlier in the thread have experienced) she should absolutely try this.

Iron supplementation through injections is a good alternative to the gastro-intestinal problems with the pills. Also a fine (temporary) strategy is eating meat sources that are extremely high in iron: liver, clams, mussels, oysters, etc. (The type of iron in meat is different from the kind in pills and should not upset her stomach.) There are some published data that suggest that some RLS sufferers can be helped by elevating their Ferritin to as high as 80-90. She should strongly consider elevating her F until it stays in the range of 80-110 for at least a few months. If the F level is consistently > 80 for four months, with no improvement in RLS symptoms, then she is a nonresponder to iron treatment for RLS and she can let it go down to 40-50 again. I was not helped personally by iron treatment but many people are, so it should absolutely be tried.

Jay Aitchsee wrote:Bump for walking coma

Jay, I've never heard it put that way, but that's me.
Yesterday I had a checkup with sleep dr; had 8 weeks data from VPAP. He seemed to like my AHI <5, but I insisted I was waking up lots; feeling like "warmed over dead" as my folks used to say. So he ordered the sweep of blood work: ferritin, thyroid, Mg etc.
Also doubled my ReQuip from 50mg to 100 mg, and today i feel groggy with taking 75mg last night.

How about Iron supplements that don't affect stomach? I've avoided iron forever becuause of the stomach irritation? earl

How about Iron supplements that don't affect stomach?

If the results of your blood work show ferritin is less than 90 there are some possibilities to get it up without stomach irritation.

First, take 500 mg vitamin C with the iron tablet. This ensures your stomach is acidic and the iron is more easily absorbed.

If this still yields stomach irritation, the second thing you should try is taking the vitamin C and iron on a full stomach.

If you still have problems, the third thing you should try is cutting the iron tablet in half and taking it twice per day on a full stomach with 500 mg vitamin C each time.

The last resort would be iron injections by your physician.

There is also time-released iron available but I have no knowledge on the effectiveness or the stomach irritation issue.

Requip is a nasty drug in my experience. I am so glad iron supplementation cured my RLS and I am totally drug free.

Good luck to you,