I have been reading the posts on this site for a few months and the information has been very beneficial. Thank you all!
I stopped taking the prescribed daily dose of Ferrous Sulfate 325 mg 48 hours before getting the Iron lab test. Also, fasted before test and had done 1st thing in the morning. Results are concerningly high (noted with *) for some of the results. As follows:
Neurologist that prescribed the testing stated not to worry about the high levels and could follow-up with my primary. But she is the one that is monitoring and treating my RLS.
I hesitate on changing the Ferrous Sulfate to every other day as I am in the process of weening off Pramipexole. I prefer to only make one change at a time so I can monitor results.
Are these results too high and necessitate urgent follow-up?
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briscc
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As Madlegs1 said, your ferritin is not too high. But your iron saturation is so I would stop taking the ferrous sulfate. You definitely don't need it for your ferritin and at 56% it is above the 55% which is normal. Even above 45%, one would need to discuss taking iron with your doctor.
hi, hope the others who replied see this. I was a dr. I don’t know what your ferritin was before you started iron & so this will alter what I say.
But a ferritin of 334 IS HIGH and it does matter.
In normal circumstances your body would not let your ferritin get that high as it would block absorption.
There is an inherited condition which needs 2 genes, 1 from each parent, to manifest itself. Even with 2 genes it is only expressed in a small percentage of folk but the gene is surprisingly common.
It results in Haemachromatosis where iron is deposited in various organs eg heart & causes significant damage.
It really really matters & you must make certain with your drs that you don’t have this. There is no way you should take iron if you do.
We have to be SO careful on this site not to give advice we are not qualified to give.
Most people without this would not be able to raise ferritin to this level by just the oral route.
I am not a medical professional, and thus can only go on what I research. While male levels over 300 and female over 200 are often said to be "elevated", a raised serum ferritin study that I found in the BJH states "Most UK laboratories simply report 300–400 μg/l as the upper limit of normal for SF in adult males and 150–200 μg/l as the upper limit of normal for adult females". Various sources, including OUH Clinical Haematology and the RACGP, give levels of over 1000 μg/l as being of real concern. I presume a test for Haemachromatosis can't do any harm, but is 334 really indicative if Briscc is male (I can't tell)?
it’s not that the level is indicative on its own. Haemachromatosis can’t be diagnosed simply by Ferritin levels. Ferritin can be high for all sorts of reasons eg inflammation.
It’s just you can’t assume this and carry on taking Iron without further assessment of body iron status. If it is haemachromatosis it is dangerous to allow it to keep rising till it gets to the levels where damage occurs.
In haemachromatosis the defect is that the chemical which blocks iron absorption is faulty so you just absorb more and more. A level on the high side is an alert to suggest that further assessment is necessary. You don’t want to wait till it is high enough to cause damage because you don’t want iron deposited in the wrong place. You want to catch it before symptoms occur.
The gene is very common, much commoner than realised then around 2-4% with it ( I think ) actually do have the condition.
None of us can just reassure that it’s ok because we can’t possibly know that without further checks.
That's why one looks at the TSAT as that is where if it is too high, above 55% Haemachromatosis would show up, not at the ferritin. Mine was over 559 and my doctor just said to stop taking iron. (My TSAT was fine) Since her TSAT was just slightly higher than 55%, that's why I told her stop taking iron.
in my view we are not her drs ( I’m a dr but not her dr ) and are not in the position to advise on something so specialised. It is too important. Drs are rubbish at treating RLS. But haematologists are not rubbish at diagnosing haemachromatosis ( or not ) and we are not haematologists
The daughter of a friend of mine has just been diagnosed with haemachromatosis, ferritin was around 300. She has the double gene & is about to have a pint of blood removed every 2 weeks for some months. It is a specialist field, not one for personal experience on a RLS forum, even one where the participants, and yourself in particular, are brilliant at providing support & information.
But we must not carry this too far because it is dangerous to do so.
I have personally been through the whole elevated ferritin issue. Being at 1400 at one stage. Went through all the tests and perfectly ok. Turned out I had iron overload from spinal operation. I got blood taken and ended with ferritin now at 170. The dr wants me to go down to 50 or less but I'm adamant that I'm ok and dont need to become iron avid. It's a fine line.
But , basically, after having it out with various consultants, we all accepted not to get worried, unless the ferritin was over 1000.
Obviously I wouldn't be advising supplementing iron, and would be monitoring the ferritin levels.
I’m glad you are fine and don’t have iron overload yourself.
The thing that concerns me with all the responses is that none of us are haematologists ( and neither is the person’s neurologist )
From a quick scan through of her further comments and info it looks like the high ferritin etc is relatively new.
But the problem with iron overload is you want to catch it before any damage is caused. A high Ferritin means nothing on its own.
But we are ‘designed’ to prevent iron overload by having a mechanism in our bodies to prevent iron absorption by the oral method once we reach a certain level though being given it intravenously obviously avoids that block.
The reason women tend to develop haemachromatosis later than men is that they naturally lose blood regularly till they become menopausal. We shouldn’t be able to develop a high iron saturation by only taking iron orally unless our mechanism for blocking iron absorption is faulty eg by having 2 faulty genes.
Each person on this site has his/her own circumstances but what tends to worry me is when unqualified people give reassurance when they are not experts but just have personal experience.
This forum is a lifeline for many with RLS, including myself. The level of ignorance among drs of this condition & the lack of appreciation of the degree of suffering it causes is dreadful. Being pointed in the direction of sympathetic drs & the current guidelines is invaluable as is highlighting the bad prescribing & the expression of sympathy & listening to personal experiences which may lead to progress.
But the assessment of body iron statue is a specialist field & there is nothing wrong with the knowledge & care of this in the medical community and in haematologuists in particular.
I believe that extending our remit beyond the realms of RLS & into the specialist area of iron assessment is dangerous & may result in risky reassurance. It is very important to know when red flags may be appearing that they do not signify faulty genes which could result in excessive absorption in the future. The genes are identifiable now.
As someone who has been supplementing with iron for years, I have taken at least 3 blood tests a year. I have even received iron values like yours (high). One sample was so high, both the Doctor and I threw up are hands and said, retest in two weeks. It went back down.
I don't think you need to be worried. The saturation percentage is going to be off, because you have been supplementing. Because this has happened to me, I stop supplementing a whole week before my tests. It seems to help, especially the TSP.
It is hard to get my ferritin around 200. I have finally settled down to 45mg of Ferrous Bisglysinate, every night. My last test was 156 ferritin and 36 TSP.
I would consider cutting back though. Maybe not every other day while weaning from Pram, but cutting to 200mg or so would probably be advisable . Another thought is moving to different type of iron that may be easier on your stomach that you can continue to take everyday, like ferrous bisglysinate. (the come in smaller forms, like 27mg of elemental iron. Supposedly Ferrous Bisglysinate absorbs better, so not as much iron is necessary.
I know it is frustrating. I would consider backing off a little.
I know you are cutting Pram, has the iron helped in anyway? Have you noticed a difference? What was your ferritin when you started? How long have you been supplementing?
the first time I had an iron infusion ferritin went up to 650. It decreased each year until I just ended up at 51. I just had another infusion 2 weeks ago and I’ll have another test in mid October.
I appreciate all the feedback which has helped me address my concerns. Your input has caused me to dig deeper again into daily logs to identify add’l information that will be help me further my inquiry. I will have more information after I recap my log. Sure miss my retired physician that reviewed my history and ALL my tests, etc . Unfortunately, last primary physician moved and in process of finding a new one.
I am a 67 year old female that has had RLS for 20+ years. Each doctor has increased or added meds as I progressed through trying to find a physician that could help with the increased RLS in the legs and that had augmented to the arms. This Neurologist is the first to address an Iron supplement and the first to understand my wanting to get off DA’s.
Prior to the 8.31.22 Iron Panel test, I did not fast nor stop the iron supplement for a couple days (Neuro had stated not necessary)
Following are lab test results ( * above range):
2.8.19 Folate Serum 26.5 *
5.4.21 First Iron Panel test and day prior to adding Ferrous Sulfate.
Ferriton 72.6 Iron 91 % Iron Saturation 27.9 TIBC 326
8.24.21 Ferriton 168.1 Iron 101 % Iron Saturation 30.4 TIBC 332
11.29.21 RLS had decreased / Ferrous Sulfate taken every other day
Ferriton 193.5 Iron 66 % Iron Saturation 20.7 TIBC 319
8.31.22 Ferrous Sulfate daily but stopped 48 hours prior to test/ prior was taking daily
Folate Serum 34.0 * Ferriton 334.5 * Iron 150 % Iron Saturation 56*
TIBC 267 UIBC 117 *
****************
Medications:
Prior to my 1st visit with my current Neurologist on 5.4.21, I was on the following medications:
8:00pm Carbidopa/Levadopa 25/100mg (Added years ago since could not take Pramipexole earlier in the evening when RLS kicked in due to extreme drowsiness.)
8:00pm Carbidopa/Levadopa ER 25/100mg
10:30pm Pramipexole 1mg
5.5.21 Added Ferrous Sulfate (2) 325mg – cut back to 1 per day 6.17.21
Current Meds (as of 9.1.22)
Midday Ferrous Sulfate (1) -holding off until feedback from Neuro unless RLS
8:00pm Carbidopa/Levadopa 25/100mg
Carbidopa/Levadopa ER 25/100mg
Pregabalin 25mg
10:00pm Pregabalin 75mg
10:30pm Pramipexole .28125mg (it has been a slow weaning)
***********
As of now It is very rare that I have augmentation to the arms. Also not experiencing RLS in the legs as extreme or often, however, each time I lower the Pramipexole even a small amount I have a rough withdrawal.
Not sure how to reply to all that was kind enough to give feedback. Hopefully this post will appear in your feed.
Looking at your old tests, and the fact that you didn't fast before your latest test, it seems your transferrin saturation percentage (iron saturation) is probably OK and your ferritin since you did stop the iron is OK too.
Hello Sue! I have followed your posts for quite some time. Just clarifying ... I did NOT fast on earlier tests but DID fast (& not take ferrous sulfate) on latest 8.31.22 test. Not sure if I read your reply incorrectly.
I would think the values would be lower after NOT taking ferrous sulfate for 48 hours?
I can attest 48 hours is not enough. TSP is going to skew to the high side if supplementing. That’s why it is important for the doctor to know if you have been supplementing.
Your results are still high. Maybe cut the dose to every other day. Also consider ferrous bisglysinate, it is much easier on the stomach.
I misread your statement that said you did not fast before the latest test. Since you did fast, I would stop taking the iron supplements since your transferrin saturation percentage (iron saturation) is high.
My apologies. Apparently I do not know how to use the site for replies as I missed so many that were given months ago! Hence, the reason that I did no further comment. I did see a Hematologist (a trusted doctor from years ago) who prescibed extensive blood tests which did not identify concerns. I stopped the Ferrous Sulfate a couple months before my visit. Appreciate all your input and time given.
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