Low ferritin - improvement with iron shots anyone ?

globalpilot

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My ferritin has been as low as 6 and as high as 31. My hemoglobin is slightly low at 110. Has anyone had labs similar to mine and found taking iron shots or infusions helpful ?
 

rlc

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Hi globalpilot, have you had other testing done to find the cause of your low iron stores? because unless your seriously melnourished or have recently lost a large amount of blood you should have more tests done.

I have read alot of articles saying that the underlying cause of low ferritin needs to be found before treatment is started, but that alot of doctors just treat the symptom without finding the cause.

I've run your results through diagnostic software which comes up with a list of possible causes link to them here http://en.diagnosispro.com/differen...decreased-hemoglobin/11876_11909-153_153.html If these other causes havn't been ruled out they need to be.

One thats on this list that is often mistaken for CFS is Sprue (gluten enteropathy) which is celiac disease, if you havn't been tested for this and the others on the list get them done. Just as an example my dad had low iron stores turned out that he was bleeding internaly and it had been missed

All the best
 

Timaca

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My ferritin was 5. I took a lot of oral iron (over 200 mg elemental iron daily), and my iron indices did not improve. I had heavy menses. After a uterine ablation, I was able to take oral iron and normalize my iron stores.

Figure out why you are losing iron (or if you are not absorbing it). Then take oral iron (as much as your doctor recommends) and monitor your labs monthly to see if what you are doing is making a difference.

Best, Timaca
 

rlc

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Totally agree Timaca, find the cause first then treat the iron loss

All the best
 

justy

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My ferritin levels have been at about 5-7 for over 5 years. I cant take the iron tablets because they mess with my stomache really badly. I have managed to get them up to 10 at one point - still not high enough. I also havent been able to get rid of systemic candida which my doc says is due to low iron. i have been tested for coeliac - came back negative.They arent interested in finding out the cause. In fact one doc said nothing to worry about, as i am not aenemic. Is this true?
 

rlc

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Hi justy, no it's not true, it indicates that there is possibly a underlying problem that needs to be found, especially as it has been low for so long. The diagnostic software comes up with 29 possible causes everything from hook worm to heart valve problems link here http://en.diagnosispro.com/differential_diagnosis-for/ferritin-serum-lab-decreased/11876-153.html

If your candida is due to low iron, then the cause of the low iron needs to be found, as the low iron will be stopping your imune system working properly! I remember you saying in another post that your white cell count was falling, that can be a sign of iron deficiency anemia Your doctor should be investigating the conditions on this list to find the cause, not trying to treat with out diagnosing first!

CFS is defined as having no known cause which means you have no failed standard blood tests. As you have a failed standard blood tests it means you've either been misdiagnosed or you have CFS and another problem.

I know you've had a lot of problems with NHS docs but it is important if you can to find a way to get it investigated.

All the best
 

Parismountain

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Going way back in time when trying to find a diagnosis my iron levels were off the chart high. A skeptical doctor accused me of purposely ingesting iron and wondered how I was doing it. I'll never forget that doc visit.
 

Nielk

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I had low ferritin levels a few years ago.
I received B12 shots for a few months and was feeling better.
My doctor, at the time, felt that my body was not absorbing oral B12 because of my past Crohn's disease.
I didn't really know if that was true but, at the end the B12 shots did help me.

I, personally would try to treat the low ferritin levels even while trying to investigate the reason why it is so low.
I wouldn't just leave it.
 

rlc

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Going way back in time when trying to find a diagnosis my iron levels were off the chart high. A skeptical doctor accused me of purposely ingesting iron and wondered how I was doing it. I'll never forget that doc visit.
Hi Parismountain do you still have those test results? did it include transferrin saturation,
if you can, it is very importanr to get your iron studies redone !!!

High iron levels is often caused by a disease called hemochromatosis (ironoverload) it is a genetic condition that is very common and is mistaken for CFS all the time! info on it here http://www.ironoverload.org/

info about it being misdiagnosed as CFS here http://www.haemochromatosis.org/chronic-fatigue-syndrome-fibromyalgia.html

My tests show I've got it and been misdiagnosed for 18 years, still waiting for doc to organise treatment more tests etc.

High ferritin can be a sign of other conditions as well, you need to get the tests redone and if still high get it investigated properly! that doctor was a Moron!!!!!!!!!!!!!!!!!!

All the best
 
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Hi, you could have food intolerances that are causing a system imbalance. When I stopped eating bread with yeast in it, it took away the strain on my system and my ferritin has been fine since. Celiac can also make it hard to absorb iron.
 

globalpilot

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Hi RLC,
I have not had a thorough investigation yetinto why I have low ferritin. I am trying to get a camera pill test done to see if I ahve inflammation. If I do though, that still doesnt' tell me why I'm also getting tested for celiac disease next week.

So, at this point I really have no idea why I have the low ferritin. In the meantime, 1 doctor has told me my ferritin is low and another has said it is not. It is now 31 up from a low of 6. So, I was wondering if anyone has had a ferritin level of around 30 or so and was helped by the shots.

I totally get what you are saying about finding the cause but jusst thinking in the meantime shots might help .
 

rlc

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Hi globalpilot glad to see that your getting the low ferritin looked at, hopefully the cause will be found soon, the only problem i can see with having iron shots is, if it's one of the infectious causes it will feed the infection, but a doctor should be able to tests for those and rule them out. Don't let a doctor give you shots, then re tests the ferritin say it's fine and then ignore the problem.

Doctors are tought at med school to look for the underlying cause (sadly alot of them seem to of forgotten this) The low ferritin is a clue to an underly cause so hopefully they can work it out soon! Make sure you eat gluten contain food before the test for Celiac or else you may get a false negative result , sometimes people still get a false negative if there is any doubt, then they should do a endoscopy. info about it here
http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm

All the best
 

rlc

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Hi globalpilot havn't seen any exact figures on how many days before tests to eat gluten, i'd say it would probably be best to start eating it now and continue up until the test just to make sure.

All the best
 

pamb

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Hi there,

I'm not a CFS'er, just a caregiver, but I did have quite a challenge with low ferritin many years ago. Intravenous iron made an amazing difference very quickly (though it turned out I had an allergic reaction to the carrier so we could only do it one per year for two years). So far as we can tell, my low ferritin was very likely caused by truly ghastly intestinal parasites - as in worms. No kidding.

I went through all sorts of diagnostics 'cause no one could figure out why, then a few years later, with chronically low ferritin, my naturopath discovered and got rid of the parasites. My ferritin recovered and has been fine since. If memory serves me, my naturopaths research was that particular parasite loved iron, and was gobbling it up before my body could absorb it. I can't prove anything either way, but no problems since, after about 5 years of low ferritin seems interesting.
 

rlc

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Hi pamb, thanks for the input, parasites are a very common cause of it, there on the list I posted earlier from diagnosispro (hook worms), every thing you eat there eating part of it and you end up deficient in iron and often alot of other things, unfortunately alot of doctors view parasites as a third world problem and never look for them, but they are very common in the west, and easy to catch, people who have pets or do gardening have a higher chance of getting them, there often easily treatable and once there gone all the nutritional deficiencies go and people return to health. I have seen a cfs doctor saying that they'd cured quite a few people by getting rid of parasites, they said it's especially common in children because there always outside playing.

All the best
 

globalpilot

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This information on hookworms is interesting. Would a stool test pick these up easily ? I did test for them and the results were negative.

Also, wondering if the camera pill endoscopy would show these parasites. Any thoughts on that ?


n
 

helen41

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I'm slow on the thread, but just wanted to point out that iron injections aren't always benign either- you need to weigh the drawbacks vs the benefits carefully. I had a series of iron shots in the spring of 2009. There was tattoing, a common side effect, but not one I was overly concerned about.
A few months after the shots I began to limp. A few months after that the injection area started receding, and it became apparent the muscle was atrophied on both sides exactly where I had the shots. I am doing physio to try to regain some function but it's incredibly slow because of the ME/CFS.
The tough thing is that it took so very long to show up as a reaction. I wouldn't advise anyone to make the decision lightly
 

aquariusgirl

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If memory serves (ha), amy yasko warns her clients off iron because it's a virulence factor for gut bugs and of course we all know that dysbiosis is a big part of this illness.

My 2 cents.