Iron overload
Posted , 2 users are following.
Hey everyone, newbie here with a few questions.
I don't have HH but my ferritin is high. Back in June I was anemic so I received a course of 6 iron infusions. Afterward my ferritin tested at 350. I am female with premature meno.
Anyway about a week later, starting in July, I started having steady weight gain. But it's not classis gain, it's more like bloat and swelling or edema. About 2 pounds a week for the past 3 months. It's VERY uncomfortable and breathing is difficult when climbing stairs. I've also been having stomach issues but i think this started before the iron infusion although I'm not certain on timing. (Endoscopy planned for Oct. for possible gastritis)
Also about once a month or so my stools are near white.
Does anyone see any of this as being related to my high ferritin.
I have pancreas issue which could explain the white stools but it seems currently my pancreas is playing nice.
Mostly I am baffled by my sudden and never ending weight gain/bloat that started right after iron infusion. Any connection?
1 like, 8 replies
GillianA robinann
Posted
Ferritin goes up for two basic reasons: it goes up as iron goes up, and it goes up as inflammation goes up. If your ferritin was low before your iron infusions - which you'd expect in iron deficiency anemia where iron is low - then your ferritin will go up as infusions add iron to your body. Then, as your body takes up that extra iron and uses it to make red blood cells, your ferritin will go back down until it's in normal range. If, however, your ferritin hasn't gone down or has actually gone up at the same time that the other symptoms of swelling and shortness of breath kicked in, then your doctor will suspect that there is inflammation of some sort going on. One blood test for inflammation is c-reactive protein; if it's up, that means inflammation.
About swelling/edema with shortness of breath and weight gain of around 25 pounds: as soon as you can, please ask your doctor to find out what’s going on. Take all your medications and supplements in with you when you see your doctor, as some medications and supplements can cause fluid retention.
With that much swelling and weight gain, your doctor will want to check that the protein levels in your blood aren’t low (low protein levels in the blood cause fluid to leak out of blood vessels into the tissues and you retain fluid) and that your heart and thyroid and liver are working properly. Your doctor may find it helpful if you can chart your weight in the morning and at night every day – this could show if you tend to build up fluid during the day and then pee it out over the night, or if the swelling stays pretty much the same day and night. Also write down anything else you notice that seems to be related to increases or decreases in the swelling. Your doctor will probably ask you questions about other symptoms that may provide clues – for example, urine that foams up when it hits the water in the toilet suggests that protein is being lost in the urine. Shortness of breath when lying down flat on the back suggests that the heart may not be pumping as well as it ought to. Feeling cold and tired and having a lower than usual pulse rate suggests the thyroid might not be working properly. White stools that aren’t caused by taking medication (e.g., white chalky anti-diarrheal medications can cause white stools) suggest the liver isn’t putting bile into the intestines properly - and the liver is also in charge of making the blood proteins that keep fluid inside the blood vessels where it belongs.
I hope this is helpful to you in working with your doctor to find out what’s happening to you and why -
robinann GillianA
Posted
Wow GillianA- that was impressive. I'm not sure I've ever met a doc who would know of care that much.
I called my gi doc who insisted it must be my thyroid.
I called my thyoid doc who ran a bunch of tests including liver... nothing showed up. He told me to go on a diet. I'm not sure if it's possible to gain weight as quickly as i have without a health issue as a root cause... not even pregnancy.
I see my gi doc next we so i hope and pray he has a clue.
But when it comes to health and medicine, time and time again I've been forced to figure it out on my own.
For example pancreas insufficiency took 11 years but i finally figured it out and told the docs (over 30) what test to run to confirm my dx.
It's not my thyroid. I doubt it's my heart. And my liver tests were fine. Although i dont know for certain what tests he did. I will ask for a copy.
Any idea if this could be from zinc. Since iron and zinc are antagonists?
GillianA robinann
Posted
I think that getting copies of all your lab test results and specialist consultations is a really good idea. For one thing, that will let you track changes in lab results. Sometimes a particular lab test result will be within the normal range, but over a few years, it’s gone from the top of the normal range to the bottom, or vice versa, and this sort of change can be a helpful clue that’s easy to miss unless test results are tracked back over time.
About zinc - I can’t think of how zinc, either not enough of it or too much of it, would cause edema – not saying that it wouldn’t, just that I don’t know if it could or not. I know that iron supplements can reduce absorption of zinc (and copper), and that taking higher doses of zinc over the long term can result in copper deficiency, and anemia, too.
On the other hand, maybe with pancreatic insufficiency, you’re not absorbing zinc or copper – or iron – very well, which might have made you low on zinc and copper as well as on iron?
Malabsorption can also result in low levels of the blood protein albumin, which can cause edema. (One clue to malabsorption is seeing tiny drops of oil floating on the surface of the water in the toilet after a bowel movement.)
Besides pancreatic insufficiency causing malabsorption, there’s been research recently linking pancreatic insufficiency with celiac disease and gluten intolerance. Even without pancreatic insufficiency, celiac disease can cause malabsorption of all kinds of nutrients, including iron, calcium, magnesium, zinc, B vitamins, vitamin D, and sometimes copper. Also, the stomach infection Helicobacter pylori can cause poor absorption of iron and of B12, and low B12 has been linked to edema.
You may well have already been checked out for some or all of low zinc, copper, B12, and albumin, and for celiac disease and H. pylori and malabsorption in general from whatever cause. If not, these would be good questions to ask your GI specialist, as they are all gut-related possibilities.
I know so well what it’s like to have something out of the ordinary and have to take the role of lead detective in figuring it out. I really hope that your and your GI specialist working together will be able to figure this out quickly and get you better!
robinann GillianA
Posted
GillianA I've been looking all over the internet for answers to my question...nothing. Can you try and help. I don't have hh but i need someone who understands iron.
I got some test results...
26. June (after 6 iron infusions for anemia)
Ferritin 297 (30-400) strange range for female
Iron 32 (49-151)
Transferritin 2.5 (2-3.6)
Trasferritin sat 8.9 (16-45)
13 Sept. (different doc/lab)
Ferritin 73 (50-170) no other iron tests
Clearly iron overload is not a issue. But why is my iron low and not my ferritin. This was not a fasting iron level... does that matter much. Someone on a thyroid forum mentiined anemia of chronic disease. I'm clueless.
GillianA robinann
Posted
Ferritin and iron do vary a bit depending on whether you’re fasting or not.
The short answer for how someone can have normal (or even high) ferritin with low iron is that there are two main things that put up ferritin: too much iron, and inflammation. If iron is low in the bloodstream and ferritin is normal or high, then inflammation is a possible cause.
Trying to understand *why* inflammation puts up ferritin is more complicated – but here’s my basic understanding, in case it’s helpful – your doctor should be able to explain better:
The body stores iron in iron-storage cells outside the bloodstream. As the bone marrow takes iron out of the bloodstream to make new red blood cells, the body pulls iron out of storage and puts it into the bloodstream to replace the iron taken out by the bone marrow.
The body responds to inflammation by locking as much iron in the iron storage cells and out of the bloodstream as it can. It is thought this might be the result of an ancient defense mechanism against bacterial infection: most disease-causing bacteria need iron to multiply, so not being able to get iron slows them down and gives the immune system more time to gear up and get rid of them. Unfortunately, the body doesn’t seem to be able to figure out whether inflammation is being caused by something like bacteria where locking up iron will help, or if inflammation is being caused by something else where locking up iron (probably) won’t help. As a result, the body locks up iron in response to inflammation caused by all kinds of conditions, including chronic inflammatory diseases like rheumatoid arthritis and thyroiditis - and many more.
When iron is locked up for whatever reason, the bone marrow won’t be able to get enough iron to make its usual amount of red blood cells, causing a low red blood cell count and low hemoglobin, or anemia. Thus, “anemia of chronic disease” = anemia caused by iron being locked up as a result of the body’s response to an ongoing (chronic) inflammatory disease. (Besides locking up iron, chronic inflammation causes anemia in two other ways as well, by shortening the life of red blood cells and stopping the bone marrow from making red blood cells as fast as usual.)
However, even though locking up iron reduces the iron levels in the blood stream, it doesn’t reduce ferritin because the level of ferritin depends on overall body stores of iron, including the iron that is locked away in the iron-storing cells.
Also, even if overall body stores of iron are actually low, ferritin still goes up with inflammation because ferritin leaks out into the bloodstream from cells that have been damaged by the inflammation. Therefore, you can’t trust a normal ferritin to rule out iron deficiency if there’s inflammation – you have to test iron directly (iron, transferrin, transferrin saturation).
But that’s just me reasoning from what I understand to be the basic principles of how the body handles iron.
Your doctor should be able to tell you why you were anemic, why you needed iron infusions, why your ferritin did what it did when your iron levels after the infusions were low, if you have any inflammation going on, and if there is then what your iron levels are now, and what you need to do next if anything – ?
I hope some of this is helpful.
robinann GillianA
Posted
Thanks GillianA. My doctor didnt mention anything about these wierd results. I only found out 3 months after the blood draw when i asked for a copy. My other doctor, the receptionist, said my iron was fine but when i looked at my blood tests only ferritin was tested. It was clear she doesnt know the difference between iron and ferritin.
Im hoping it's low iron and not anemia of chronic disease. I started taking iron tablets which is bad if it's from chronic disease. But friday I'm at a special clinic and will ask about testing my iron again.
I feel like hell and low iron could explain everything.
GillianA robinann
Posted
Getting your actual iron levels tested would be really helpful, because then you'll know whether you're iron deficient again or not.
Inflammation can also make people feel sick, so another test to consider asking about would be the c-reactive protein test, which is used to measure inflammation from any cause.
If the problem is iron deficiency again (with or without inflammation), you also want to ask *why* you keep getting iron deficient - are you losing more iron than you should be, are you not absorbing iron properly, or - ? Once you know the cause of the iron deficiency, then you can ask about how to fix whatever it is so you don't get iron deficient again.
I hope all goes well at your Friday special clinic visit and you get the answers you're looking for!
robinann GillianA
Posted
Fingers crossed for Friday.