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Hi there,

Today my doctor called me and said a recent blood test showed I was quite low on iron stores (ferritin, I believe?), but not yet anaemic, as my haemoglobin is currently still OK, albeit on the lower side of normal. 

I need to get an actual copy of the blood test results later this week, but I was just curious if anyone with dysautonomia has any experience with iron issues, and if they found it can contribute to their symptoms / make them worse. 

I've never really had issues with it until now. I don't eat red meat at all, so I'm thinking I will probably have to start having a little of that, as I was told that if I don't treat this now, I'll soon be anaemic, and that can't be good for my POTS symptoms, which are already almost too much to cope with. 

Thanks for any feedback. 

 

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Hi @Scout - yes, I too just recently found out that my ferritin is low at 4 and my hgb was on the low end of normal. I am now on a strong iron supplement and will get my iron panel re-checked after 3 months ( that is 1 month from now ). If you do not eat red meats you should probably get your B 12 level checked, mine is low and I get B12 shots monthly. There are several members on this forum who also have iron and B12 deficiencies, so you are in good company - Lol! 

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You are definitely in good company lol! I have low ferritin and my B12 is borderline deficient. I'm extremely sensitive to iron supplements so I just do my best to eat foods high in both... I'm also a vegan so it's something I'm always conscious of anyway. 

I get frequent bloodwork done to keep an eye on those levels and my latest one was trending up, yet I haven't exactly had more energy, so it's hard to say if it contributes to my POTS symptoms. 

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I don't know if you can buy anymore but I remember reading about something called and iron fish. It is a fish shaped chunk of iron you can put in your food as your cook it. The food will absorb the iron as it cooks. It was supposed to be a cheap alternative to supplements that was used in poorer countries to help with widespread anemia. 

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10 hours ago, StayAtHomeMom said:

I don't know if you can buy anymore but I remember reading about something called and iron fish. It is a fish shaped chunk of iron you can put in your food as your cook it. The food will absorb the iron as it cooks. It was supposed to be a cheap alternative to supplements that was used in poorer countries to help with widespread anemia. 

A cast iron pan will do it too. The iron fish will release iron into boiled water but you must activate it with lemon juice for absorbtion. One is good but don't use two.
More info at Wikipedia.

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I had to get IV iron infusions. I’ll likely need them again soon as my ferritin has dropped again. Iron supplements don’t work for me but I know if you do take iron supplement, it’s best to take them with vitamin c. If you take calcium, don’t take it with the iron. 

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I have been getting low ferritin results (not anemic) for years. I take the supplements and then months later back at the doctors for blood tests because I can feel that its gotten low again - I can just sense it. It does make my symptoms worse, especially the fatigue and brain fog. However, the dysautonomia symptoms are there whether the ferritin levels are low or normal - no improvement for me.  No matter how much iron I eat in my foods it doesn't seem to help keep my ferritin levels up. 

However, I still recommend trying to get as much of it from your diet as possible as it's not great having to rely on supplements all the time, and as others posted, have vitamin C to help you absorb more iron.

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Yes, it seems like this may be common in people with POTS.  I had extremely low ferritin when I had my worst symptoms.  

Research backs this up:

http://n.neurology.org/content/82/10_Supplement/P1.034

https://www.ncbi.nlm.nih.gov/pubmed/23720007

The basic summary is that the optimal ferritin for those with POTS is 80 or above to improve symptoms.  The reasoning behind this is due to the fact that iron is the building block for every neurotransmitter in the body/brain.

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Thank you all so much for your replies. 

Very appreciated! 

My b12 has been slightly low on occasion, but the past few times, it has come back OK. 

I will look at having a small amount of red meat a few times a week, and see if that improves! 

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@Scout - leafy greens and parsley are high in iron! 

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I have chronic iron deficiency anemia. For the last 4 years a hematologist has been managing it with iron infusions. Thankfully the newer form they use for infusion can last for up to a year. Because we know that I constantly drop he doesn't wait until I get critical before doing an infusion. Because of my gastroperesis everything I've tried orally or through my tube has failed to make a difference. 

This May I was admitted to the hospital with severe anemia, hemoglobin was 5.1. This was considered different, a blood loss anemia, not iron caused. 4 units of blood and they got me back up to 10.9. Recent check my iron stores and blood counts have dropped significantly so planning an iron infusion soon. 

The biggest symptom I have from anemia is 0 energy. It also makes it more difficult to manage my already irradic blood pressure. It also used to raise my heart rate but that's not been an issue since I got my pacemaker. 

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There's two types of iron in foods: heme and non-heme

The heme is more easily absorbed and is found in non-vegetarian foods... I can't cook up a pile of liver since I live alone so I've been eating smoked mussels lately (they're the fourth highest source in the list I found) btw: smoked oysters are dangerous to eat in large amounts... I'm also eating liver pate at lunch and lots of lentils... (lentils and soybeans are tops in the non-heme category... pumpking seeds, spinach, red kidney beans... all good, I eat these every day) I've been iron anaemic for four years... my second last test was normal but the current one I'm low again... I wish I could tell how this affects how I feel but I honestly can't tell... I just keep trying to eat hi iron foods... I am skeptical of blood tests vs how things are really assimilated  (oh, and I'm on iron supplement: Palafer Iron a.k.a. Ferrous Fumarate 300mg a day) ... an odd bit: the highest non-heme source is Infant cereal (dry) 7.0 mg Iron per 5 tbsp

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I used to be anemic quite often prior to my hysterectomy. Since then, I have been only borderline anemic but with very low B12. B12 injections only got me so far, mainly because PCP only wanted to do one per month. Added in sublingual B12 1000 mcg every other day and my numbers (including platelets) have improved significantly. PCP recommended sublingual because she said it is common for Hashi's and celiac patients (and I'm guessing many with chronic illness) to have absorption issues so even if eating a lot of certain vitamin, it may not make it into the part of the stomach/intestines where absorption occurs.  

This deficiency was discovered around the same time as the dysautonomia and improving those numbers has helped with some of my symptoms, so definitely correct what you can. 

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Not anaemic in any way but was a biochemist. One of the best ways to get iron into your body is cooking eggs in a cast iron (non coated) pan. The eggs contains iron binding proteins that increase the iron content of the eggs by about 400%, it also binds it in a way that means that you can absorb it into your body. (By the way if you cook them in aluminum pans the aluminium gets bound to the same protein and gets absorbed, because there is less aluminum naturally present in eggs the aluminium content goes up about 3000%. Aluminum has been implicated in Alzheimer's presenile dementia so personally I never cook in aluminum)

Absorption is important as often some supplement producers just include iron, and this passes straight through. With fortified cornflakes you used to be able to grind up the cereal and extract the iron with a magnet. This is about as much use as you would expect, but they can write a large iron content on the box.

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