Low ferritin and POTS

[Bluebonnet08]

I just found out that my ferritin was very low (8).  I've been doing some research on it and found that low ferritin has been linked with increased POTS symptoms.

Those with ferritin levels of under 50 were more than 3x likely to exhibit POTS symptoms:  http://n.neurology.org/content/82/10_Supplement/P1.034

Here is more information on it.. very interesting:  https://www.bumc.bu.edu/busm/files/2016/01/enrichment-poster-wallman-daniel.pdf

I am more and more convinced that this is a very often under-diagnosed problem for many women.  Iron deficiency is the biggest nutritional deficiency in the world, yet this test of iron is often overlooked.

[Bluebonnet08]

This quote was taken from another article on "ProHealth" website explaining one young man's 80% recovery from POTS by getting diagnosed at Mayo Clinic with very low ferritin. 

 

"Several hypotheses have been put forth to attempt to explain the correlation between lowered iron storage levels and orthostatic intolerance. They include altered blood viscosity, red blood cell deformation and hypoxia associated mitochondrial dysfunction (all of which have been suggested in ME/CFS).  Another possibility is abnormal metabolism of the neurotransmitters (catecholamines) used in the autonomic nervous system. Some researchers believe POTS patients with greatly increased sympathetic nervous system activation (hyperadrenergic POTS) might have the biggest iron storage issues of all."

Article:  https://www.prohealth.com/library/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i-6672

[yogini]

Please keep us posted on your treatment.  I wonder if treating the ferritin would make your POTS symptoms go away.

[Pistol]

@Bluebonnet08Thanks for bringing ferritin to our attention. I just had mine checked today because of your post & it is low at 4! Wirhout your info I would not have known to check it. 

[Always hoping]

From the things I have read, "hidden anemia" is not uncommon in POTS.  My CBCs had always seemed fine but when they actually did the Ferritin test I was at a 4.  While fixing the issue didn't "cure" my symptoms it made an enormous difference in my fatigue and lightheadedness (is that a word? lol).  I went for Iron infusions once a week for 4 weeks and then an infusion every 3 months.  They aren't sure of why I couldn't maintain my levels but the infusion every 3 months kept bringing me up to a good level.  I've been doing the infusion for about 2 years.  I pushed my last infusion off until 4 months and had blood work the day before.  My levels were great!  I'm hoping that my body is now either producing, absorbing or holding it's iron and hopefully I will be able to prolong the infusions even more.  Yes - it is an easy test that isn't paid enough attention to.  I have a great hematologist who was actually unaware of this "hidden anemia".  He now has another POTS patient that he is helping.  Good luck!

 

[RecipeForDisaster]

Not anemic but also had very low ferritin at 6... can't get the level above 40 no matter what (325mg ferrous sulfate 3 times daily with acidic foods and no coffee) and wonder if I should do the IV form. I hear the infusion makes you feel really sick... but I'm curious whether increasing my ferritin would help me feel better. 

[Guest KiminOrlando]

Be careful with iron. The inverse is also true. You can have high feritin which causes issues with your liver. It is called hemochromotosis, I think. Check with your doctor before taking iron or any vitamin or mineral that isn't water soluble. 

I had high feritin, but anemic.

[Pistol]

I would like to ask anyone with low iron/ferritin what oral supplements actually work. I eat a high iron (sort of) diet, yet are low in ferritin. Does that mean if I take ferrous sulfate (or others) that this iron will not be metabolized either? My PCP suggested to take an iron supplement daily and recheck ferritin in 6 months. How do I know if my body absorbs the iron supplement if it does not absorb the iron from my diet? Also - I take Protonix 2 x daily for my extreme indigestion caused by dysautonomia - does that not cause problems with absorption? I know that these are questions for my docs but I am just asking for experiences of others, not medical advice ( I do have wonderful docs - but I AM my own advocate ) . I am ever so grateful for the advice we give each other - thanks!

 

[Always hoping]

8 hours ago, RecipeForDisaster said:

Not anemic but also had very low ferritin at 6... can't get the level above 40 no matter what (325mg ferrous sulfate 3 times daily with acidic foods and no coffee) and wonder if I should do the IV form. I hear the infusion makes you feel really sick... but I'm curious whether increasing my ferritin would help me feel better. 

I was anemic also and none of the supplements helped increase my numbers.  My gyno told me about the infusions which have been great.  When I first started with the infusion once a week for 4 weeks, I did feel really bad at week 3.  The infusion nurse said that this was normal that it got worse before getting better.  By week 4 and every infusion since then, I've been absolutely fine with no problems.  Occasionally I am slightly tired later that day but really nothing.

@KiminOrlando - great thing to point out.  Too high is just as bad or even worse than too low.  I know someone that has to go every month to have iron removed from his body.  I didn't realize that you could have high ferritin and still be anemic.  Crazy how the body works.

@Pistol I remember the doctor wondering if my daily Prilosec was stopping my absorption but nothing was ever clarified about why food and supplements weren't working for me.  

 

[RecipeForDisaster]

Normally other labs are done, too, like iron binding capacity and saturation. That way they can tell if you have it on board, can absorb it, etc. In my case I can see that my saturation is high, so I am absorbing it okay... just not enough or I am losing it. Ferrous sulfate isn't the best (easily tolerated and absorbed) form but I tolerate it and absorb it okay, personally.

 

i do think PPIs would make it harder to absorb iron (and a lot of other nutrients).

 

i guess I will let the hematologist go for the infusions next time-good to know.

 

 

[Shannoncr]

hi, I’m new here. I haven’t been diagnosed with POTS or any autonomic disorder yet, though convinced I have it. Was diagnosed with neurocardiogenic Syncope in 05. 

Anyway, my ferritin level was 2. tried iron supplements with no change. finally got IV iron infusions, I had a reaction to it similar to like an arthritic response my first two infusions but was fine by the 3rd, just some stiffness/soreness. my levels never got above 36. this was in 2010. they decided my body just doesn’t absorb certain nutrients the way it should. But it was better than being at 2.

had my levels rechecked again two weeks ago because my symptoms have progressively gotten worse over the last 6 months especially & im at 12. but my primary care said because it’s withinin normal limits (10-200 - though most women feel better with levels in the 100) no need for infusions. 

low ferritin also messes with your thyroid. 

thank you all for sharing your stories & I hope you find answers. 

 

 Shannon

[Bluebonnet08]

@Pistol- Wow, a 4, that is really low!  Anything under 20 is deficient and the research study said anything below 50 contributes to POTS symptoms.  You also said you had Hyper-Pots, which I think I might have as well, and they said that is more common the lower the ferritin gets.  I am taking "Ferro Sequels".  I am now supposed to be taking 125mg a day, but I am also pregnant at 37 weeks.  My levels were 8 and while I have had POTS for 13 years, I am literally at the worst I've ever been with the symptoms of POTS (palpitations, fatigue, shortness of breath, anxiety etc).  I honestly thought I might be losing it I started the iron and within a week the horrific palpitations have started to decrease a bit. It is by no means fixed, but I am at least not in the crisis mode I was in last week.  I think it's already helping.  I guess the pregnancy depleted my iron which was probably already low.  You can get a full iron panel which has iron saturation levels, iron binding capacity, etc, to find out more.  I think I have read that proton pump inhibitors block iron absorption.  I am just learning about this too, but I also read that B vitamins help absorb the iron and it's good to get B-12 above 500 and also have a good probiotic.  Please let me know how you start to feel as you increase your iron.  I am very interested to see if it will help. 

@Always Hoping - How high did you get your ferritin levels?  

@RecipeForDisaster- The research article says that ferritin levels should be above 50 to see some improvements in POTS symptoms.

 

 

@Shannoncr- The recommendation from The World Health Organization says anything below 15 is deficient... and I've also read under 20 is deficient.  The research on POTS shows that ferritin should be 50+ to see improvements in symptoms.  

I'm very surprised that I have not heard more about this.  My levels are so low and I already see some slight improvements taking a high dose of iron.  I'm starting to read about the link between post-partum depression and low ferritin too.  I think this has big implications for POTS and could potentially help abate some of our symptoms.  I'm excited to see if it helps me more!

[MomtoGiuliana]

Wow--thank you for sharing.  Glad you are feeling better.  Were you not taking iron supplement at all prior to this, if you don't mind me asking?  I was taking a prenatal vitamin with iron during my pregnancy.  I know tests were done regarding iron for me but not sure if ferritin was tested.  

[Bluebonnet08]

@MomtoGiuliana- My prenatal only had 18mg in it!  I am now supposed to be taking 125mg, prescribed by my OB.  I really thought I was going to die the last few weeks, I started feeling so bad... I know you can relate.  Since taking the iron, I've noticed a difference.  I am not "better", but the symptoms are not in the crisis state that they were in the last few weeks, thank goodness!!  The palpitations had gotten so frequent and severe and it seems they are backing off a bit.  I HOPE it continues.   I wish I had known about this sooner.  

[Always hoping]

@Bluebonnet08  Originally after my infusions my ferritin would go up to around 67 and the go back down into the 20s before the next one 3 months later.  This last time (about 2 years of getting them every 3 months), I got bloodwork done the day before I got one at 4 months and I was at 139!  A little nervous now that maybe I shouldn't have gotten this last  one.  I don't want to go too high!  Lol.   My gynecologist is the one that recommended the infusions.  She said that she used them for her pregnant patients that were running low.  She felt that they had enough to deal without adding the bathroom issues from the supplements.  The infusions really helped my symptoms a lot.  I'm hoping that maybe my body has "reset" and that I eventually won't need them.

[HopefulwithN2]

On 4/27/2018 at 5:39 PM, Pistol said:

I would like to ask anyone with low iron/ferritin what oral supplements actually work. I eat a high iron (sort of) diet, yet are low in ferritin. Does that mean if I take ferrous sulfate (or others) that this iron will not be metabolized either? My PCP suggested to take an iron supplement daily and recheck ferritin in 6 months. How do I know if my body absorbs the iron supplement if it does not absorb the iron from my diet? Also - I take Protonix 2 x daily for my extreme indigestion caused by dysautonomia - does that not cause problems with absorption? I know that these are questions for my docs but I am just asking for experiences of others, not medical advice ( I do have wonderful docs - but I AM my own advocate ) . I am ever so grateful for the advice we give each other - thanks!

 

I'm searching for a correlation and came across your question. Did you end up finding a good supplement? Get infusions? I was directed to a chelated ferritin by a Kaiser pharmacist and was using the FERROCHEL by Designs for Health and never got sick while taking it. I eventually stopped being anemic when I had a hysterectomy, but afterward got dysautonomia. Now I'm going to have my ferritin checked again, even though HGB and HCT have been normal for 10 years, my level of exhaustion is unbearable. I just got dx'd with narcolepsy, so it may or may not be related. I'm trying to find something else that could be causing the meds for N2 to not be working as well. Thanks for your post tho, I also take Protonix.

[Pistol]

1 hour ago, HopefulwithN2 said:

Now I'm going to have my ferritin checked again, even though HGB and HCT have been normal for 10 years, my level of exhaustion is unbearable.

I have found that eating an iron rich diet and eating foods rich in ferritin took care of the deficiencies. However, fatigue still occurs with flares. On any given day, even the best of days, I can only be functional for a few hours, and those not even in one sitting. My vitamin, mineral, iron and ferritin levels are normal. So, for me it is eating well, living within my limits( which are dictated by dysautonomia ), getting twice weekly infusions, taking my meds religiously and exercising to tolerance. I have been able to decrease the Protonix to daily and by changing my dietary regimen and eating 6 small meals a day rather that 3 large ones I have been able to improve. 

[Tree63]

Hi there - POTS/EDS/MCAS trifecta here with ferritin of 12 but GP says ‘fine’. I’ve tried the above links but can’t see where it definitively says ‘POTS patients with a ferritin sub 50 have more issues’. I’m trying to gather ‘evidence’ to get iron supplements from my GP. Thanks 

[RecipeForDisaster]

I did end up getting infusions, because no one wanted me having another reason to be weak, cold, and anemic. I tolerated them well and they got my levels over 100 when nothing else could.

[Sarah Tee]

@Tree63, is this what you were after?

Quote

Patients with serum ferritin below 50 ng/mL were 2.848 times more likely to exhibit POTS than patients above 50 ng/mL. 

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

Forgive me if I am telling you something you already know, but just keep in mind that this shows a correlation between low ferritin and POTS. It doesn’t show causation. To show that, the reasearchers would need to take a group of patients with POTS and low ferritin, give half of them iron to raise thier levels above 50, give half placebo, and then see whether the patients who got the iron supplement/infusion had a) reduced symptoms and b) higher iron levels at the end of the experiement.

You could also email Dysautonomia International and ask whether there has been a conference lecture covering this topic. The lectures are published on Vimeo, but the topics aren’t very easy to search.

https://vimeo.com/dysautonomia

[Sarah Tee]

@Tree63, did you see this discussion on Reddit? I know it won’t help convince your GP, but it might be helpful anyway.

 

[MikeO]

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[MTRJ75]

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