Iron Man: A Young Person's POTS ME/CFS Recovery Story Pt. I

What are your blood ferritin levels?

  • >100 ug/mL

    Votes: 4 40.0%
  • 50-99 ug/mL

    Votes: 3 30.0%
  • 25-49 ug/mL

    Votes: 0 0.0%
  • <25 ug/mL

    Votes: 3 30.0%

  • Total voters
    10

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Infection Fells Teenager

In August 2014, a formerly very healthy and active Jack Schlanger entered the realm of the chronically ill. The thirteen year old's story began with three days of high fever followed by eight days of lower-grade fever and extreme fatigue/malaise. About two weeks later he began experiencing nausea and loss of appetite, and had a massively swollen lymph gland. His skin began peeling off his hands and feet.

A myriad of blood tests followed, almost all of which were normal, except for some mild abnormalities in his red blood cells, hemoglobin and hematocrit tests, and high platelet, monocyte, and high eosinophil counts.

[fright]
Breaking-point.jpg
[/fright]An infectious disease specialist believed Jack was suffering from a coxsackie or similar virus, and he was treated with the antiviral medication Zovirax for a week, followed by a 10-day course of Amoxicillin.

During September Jack experienced illness flares which left him pale, lethargic, without an appetite, and with stomach pain at roughly 3-5 day intervals.

ENT and infectious disease specialists ordered ultrasounds which revealed two large lymph nodes the size of golf balls. More blood work was done, all of which came back normal except for the puzzling low hemoglobin and hematocrit levels, and a few immune tests.

By now Jack has been tested seven times for mononucleosis, twice for Lyme disease and several times for herpes and other viruses. Plus he's had his lymph nodes biopsied for lymphoma & other lymph node diseases. All the tests have come back normal.

Jack improved after one of his enlarged lymph nodes was removed, but then relapsed, and after missing too many classes was finally pulled from school. He was now being home tutored.

In Nov. Jack was referred to a specialist in adolescent medicine who diagnosed him with post-viral fatigue syndrome. (After Jack hit the six month mark in February, he's diagnosed with chronic fatigue syndrome (ME/CFS)). Thankfully, he was not referred to psychiatric care, but his parents are informed that nothing further can be done. By now Jack is experiencing near constant stomach pain.

Four Diagnoses

When more blood tests, trips to specialists and another biopsy didn't pan out Jack's parents were at a loss until a week at the Rochester Mayo Clinic in March left Jack with four diagnoses:
  1. POTS (Postural Orthostatic Tachycardia Syndrome) (53 beats per minute increase upon standing) - POTS occurs when one's heart races during standing
  2. iron deficiency
  3. mild neutropenia
  4. gastric erosion.
Jack was put on metoprolol 25mg twice daily, iron supplements (vitron C – 1 tablet=65mg iron – once daily), & prilosec (once daily) for his gut issues. He was told to take in as much salt as possible, drink 3-4 liters of liquid per day, start cognitive behavioral therapy (once a week), slowly ramp up his exercise program (goal = 30 min of exercise plus 30 min other activity per day) and try to find a way to attend school. The head of his bed was raised 4-5 degrees to help him with sleep.

From March through May Jack very slowly improved. He gained a couple of pounds, his stomach pains - his worst complaint - are reduced a bit, and he's sleeping a bit better. He's able to attend two classes at day at school, and is doing five minutes of exercise in the morning and 15-20 minutes of walking and jogging on treadmill in the afternoon. He is still bothered by exercise induced fatigue and other symptoms.

Despite being on iron supplements for nine weeks Jack's blood ferritin levels (20 ng/ml) are, however, unchanged in May and his neutrophil and WBC levels remain low. When all Jack's pediatrician can do is to recommend more iron tablets a day, the Schlanger's are at a standstill.

Iron Man
The body has no way to compensate during strenuous exercise for the loss of oxygen carrying capacity in such cases, which in turn may explain the extreme fatigue and exercise intolerance in POTS. Jarjour and Jarjour
In July, 2015 Jack met with a hematologist who put him on prescription oral iron tablets and told him to take them with orange juice and in between meals which contain dairy products and eggs. His ferritin levels jumped up fifty percent to 30 ng/ml over the next four weeks and Jack improved.

In the fall he was able to attend four classes a day, but despite months of graduated exercise training (GET) he was still unable to participate in sports.

In September, in an attempt to increase his iron levels, Jack began Venofer iron sucrose infusions. His first infusion bounced his ferritin levels to 47, and after the next one they're at 93. Jack could immediately tell the difference; he was not well but he was starting to play some hockey and he was not getting sick after exercise.

(The Schlanger's considered Fereheme infusions, which they had heard had great results in some POTS patients but went with the Venofer infusions because of possible side effects.)

[fleft]
Iron-pills-POTS.jpg
[/fleft]Since Jack began the infusions (he's had 7 in about 9 months) his serum ferritin levels averaged 66 ng/mL. Note that Jack's iron levels are now far above what most doctors would consider that he needs.

Jack's first big breakthrough came when he finally was able to get more iron into his system. His levels had gotten up to 30 ng/mL - well above the action point in medicine - but he needed more. The iron infusions alone got Jack to about 80%. He was able to make it through 75% of his normal school day and was regularly doing light exercise without feeling any post-exertional malaise.

Why might iron be so helpful for Jack? Iron is a critical factor in aerobic energy production - our main means of producing energy. Oxygen is carried to our tissues by hemoglobin which is dependent upon iron. Low iron levels, then, reduce the amount of oxygen that gets delivered to the mitochondria. It's no wonder that anemia is often (but not always) associated with fatigue.

Achieving optimal iron levels has been shown in various studies to improve aerobic ability, endurance, muscle fatigability and restless leg syndrome, as well as cognition including memory, verbal learning and other facets of cognitive functioning.

What Are Your Ferritin Levels?

Jack's iron issues were initially missed because his ferritin, hemoglobin and hemocrit levels were never more than low "normal". It wasn't until he met with the POTS specialists at the Mayo Clinic that iron entered into his health equation.

That, of course, brings up the question - what is a healthy serum ferritin level? Jack's experience suggest that normal iron levels in one person might be too low for another.

That actually makes some sense given the huge range of iron levels found in humans. Medicine.net defines normal blood ferritin levels for males (12-300 ng/ml) and females (12-150 ng/ml). WebMD's normal ferritin levels are a bit higher (men 18-270 ng/ml, women 18-160 ng/ml), but they note that "a value that falls outside the normal values listed here may still be normal for you or your lab".

[fright]
iron.jpg
[/fright]The American Family Physician (AFP) website, on the other hand, states that "patients with a serum ferritin concentration less than 25 ng per mL (25 mcg per L) have a very high probability of being iron deficient".

The situation is confused by the fact that inflammation or infection can elevate ferritin levels. If chronic inflammation is present, the AFP states that "iron deficiency anemia is likely when the ferritin level is less than 50 ng per mL". In fact, if inflammation is present, the AFP believes that iron deficiency can only be excluded when ferritin levels are greater than or equal to 100 ng per mL (224.70 pmol per L).

Being female may add another layer to the issue. A study found that women seeing a doctor for fatigue who had seemingly normal ferritin and hemoglobin levels benefited greatly from iron supplementation. In a multi-centre, parallel, randomized controlled, closed-label, observer-blinded trial they were given oral ferrous sulfate (80 mg of elemental iron daily; n = 102) or placebo (n = 96) for 12 weeks.

The women on the iron supplements decreased their fatigue by 50% - a statistically significant amount compared to placebo. The authors proposed that women experiencing unexplained prolonged fatigue may be iron deficient if their ferritin values are below 50 μg/L, even when their hemoglobin values are normal (above 12.0 g/dL.). They noted that even though ferritin and other measures were in the normal range, the iron supplements increased the women's rate of red blood cell production.

We don't know the ferritin inflection point for Jack - the level at which ferritin really made a difference for him - but note that 30 ng/ml was not enough. It wasn't until sucrose iron infusions boosted his ferritin levels above 50 that he really noticed a difference.

Jack apparently needs considerably more ferritin than his sister (30 ug/mL) to stay healthy. His ferritin levels are now (50's to 100 ug/mL) are similar to his mother's (80 ug/mL).

Jack's low white blood counts (WBC) (3.5 thous/mcl) and neutrophils (absolute -1092) had been an ongoing concern as well, but they rebounded after Jack began the iron infusions. They were normal for five months but then dropped several times into the low range during the last five months Jack has been near healthy suggesting that low WBC's and neutrophils were not the issue for Jack.

Questions

Unfortunately nobody knows whether infections, growth spurts or other factors are kicking off low iron stores - and POTS - in Jack and other adolescents, or if their low iron levels preceded the onset of their POTS.

Nor is it clear why Jack and some other POTS patients have difficulty absorb oral iron tablets. Jack's parents reported that a Dallas hematologist, Dr Birenbaum, who uses Feraham iron infusions, clams that most of his POTS and cancer patients do not absorb oral iron well.

Low Normal Ferritin Levels?

What to do if you have ferritin levels below, say, 50 ng/mL and you are experiencing fatigue, stomach problems and other issues? Perhaps do what Jack did. Try oral iron tablets and then get your blood ferritin levels checked again.

If they haven't gone up perhaps consider trying a sucrose or other iron infusion. The results in Jack's case were obvious - he quickly felt better.

Taking Iron

Because the absorption of elemental iron is enhanced by an acidic gastric environment taking ascorbic acid (Vitamin C) with iron can help. Foods rich in tannates such as tea, or phytates such as bran and cereal, or pH raising drugs such as antacids, histamine H2 blockers and proton pump inhibitors should be avoided.

Jack's doctor had him taken iron with orange juice and to avoid meals with eggs and dairy. Iron taken on an empty stomach is absorbed best, but can cause gastrointestinal upset and constipation. For people who can't break down the coating on iron tablets liquid iron may be best.

Iron Deficiency, Autonomic Nervous System Issues and POTS

Questions concerning the relationship between iron deficiency, orthostatic intolerance and autonomic nervous system dysfunction are not new. Despite growing evidence that iron deficiency commonly occurs in POTS, iron supplementation is rarely mentioned as a possible treatment. Jane Brody's excellent New York Times Piece on POTS, for instance, does not mention it. Outside of its use with erythropoietin it's not mentioned in DINET's excellent POTS treatment page, in Dysautonomia International's treatment overview.

Back in 1994 Biaggioni (who has done work on ME/CFS) found that anemia was common in people who had low blood pressure upon standing (orthostatic hypotension). A very small study the next year also found that autonomic failure was highly associated with anemia and orthostatic intolerance.

[fleft]
CFS_Woman_Exhausted.jpg
[/fleft]Jajour and Jajour found that 50% of adolescent POTS patients compared to 14% of adolescents in the population at large had low "iron storage" levels (SF < 25 ug/L). Twenty-five percent of adolescent girls were deemed to have iron deficiency (SF< 12ug/L) compared to 9% of the population at large. Almost half of the young males in the small study were deemed to have anemia. This same group found low iron storage in adolescents with neurally mediated syncope or fainting.

A larger Mayo Clinic study (n=188) examined adoolescents with fatigue and/or orthostatic intolerance. The study participants, 75% of whom were female, commonly experienced dizziness upon standing (84%), fatigue (71%), headaches (63%), and nausea (54%). It defined iron deficiency as serum ferritin 12 Kg/L, and low iron storage as serum ferritin 25 Kg/L. Hypovitaminosis D was defined as=25-hydroxyvitamin D levels of e 20 ng/mL.)

Almost 70% of the participants were found to have postural orthostatic tachycardia syndrome (POTS). Sixty-nine percent either had iron insufficiency or low iron stores. Increased heart rates were not associated with low iron but low vitamin D levels were.

People with iron deficient anemia also tend to have reduced heart rate variability and increased sympathetic nervous system activity. (A similar kind reduced HRV is also found in FM and chronic fatigue syndrome (ME/CFS).

A Mayo clinical trial examining the efficacy of iron sucrose infusions in POTS patients with non-anemic iron deficiency slated to end in December of this year. It should, if successful, add iron to the list of generally accepted treatments for POTS.

Causes

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.

The Nitric Oxide Connection

Jajour and Jajour speculated that reduced iron stores could increase the levels of nitric oxide (NO) present. Because the endothelial cells lining the blood vessels release NO to open up or dilate the blood vessels, increased NO may be contributing to POTS. Increased NO levels, in fact, have been found in POTS.

Interestingly, iron deficiency anemia has been associated with increased NO metabolite levels as well. Hemoglobin, it turns out, is the main scavenger of nitric oxide, and is apparently why fainting is another possible consequence of anemia. Indeed, one research group has linked reduced ferritin levels with "neural mediated syncope" or fainting.

Interestingly, the salt craving common in ME/CFS and POTS could derive from salt's ability to reduce endothelial NO levels.

The single largest reservoir of blood in our bodies is found in our abdomen. Julian Stewart, who has been studying POTS and ME/CFS for years, believes that either the presence of anemia or reduced iron stores causes increased nitric oxide production, blood vessel dilation and blood pooling in the abdominal area first. Abdominal or "splanchnic" blood pooling has been found in POTS.

Conclusions

Jack's flu-like onset and his symptoms were typical pretty for a POTS patient. He was lucky to go to a center (Mayo Clinic) which correctly diagnosed his low normal iron levels as iron deficiency. When oral iron failed to bump up his iron levels sufficiently, Jack's parents turned to iron sucrose infusions. Once Jack started those his energy increased dramatically, his stomach problems calmed down, and he was able to return to school and engage in light workouts without suffering from post-exertional malaise.

The kicker with Jack's case is that Jack's sister and mother, and his mother's sister and nephew all test very much like Jack, but all are healthy. They all experience tachycardia upon standing, and they all have poor venous return (their heart isn't getting as much blood as normal). Jack's sister plays three sports, though, and his mother is a CrossFIt instructor.

The one difference found thus far is that their ferritin levels are higher than Jacks were. Unfortunately, we don't know if the Jack's flu triggered a collapse of his ferritin levels or if they were low before. The significant number of people who would test positive for POTS on a tilt table test yet have no symptoms at all, however, suggests that an important factor is missing from a POTS diagnosis. Could low ferritin levels be that factor?

Jack is back to 80 or 85% functioning, but he's not well yet; he's not the athletic young man he was before he became ill, and he's not engaging in competitive sports. We'll see that Jack will regain his health, but he'll have to use a controversial method to do it.

Stay tuned for that in Iron Man Part II: A Young Man Recovers from POTS.
 
Last edited:

Who Me?

Well-Known Member
I'm not sure how this relates but my TIBC (total iron binding capacity is 369 ref 250-450 but my ferritin is 32

I'm taking a dessicated liver supplement since iron is constipating. I get retested in October. So far I'm not noticing much but I may not be taking enough.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm not sure how this relates but my TIBC (total iron binding capacity is 369 ref 250-450 but my ferritin is 32

I'm taking a dessicated liver supplement since iron is constipating. I get retested in October. So far I'm not noticing much but I may not be taking enough.
You wouldn't make the cutoff point for inclusion into the Mayo Clinic POTS iron infusion study. (My guess is that they're being conservative in this first study and that cutoff point may rise.) Since you are woman and are fatigued you would fit into that group of fatigued women with iron levels below 50 who benefited from iron.

Note also that when Jack's ferritin levels were 30 he had improved a bit but it wasn't until his iron levels went above 50 that they really made a difference.

If you're experiencing inflammation - and I don't know how the AFP measures that - they could consider an ferritin level below 50 as possibly low.

What I got out of this is that what a good ferritin level is varies widely. Some people who have low ferritin levels are perfectly healthy while other people with those same levels would benefit from more iron.

Some people with low ferritin levels benefit from iron supplements while others, like Jack, need infusions.
 

Mark C

New Member
Infection Falls Teenager

In August 2014, 13 year old a formerly very healthy and active Jack Schlanger entered the realms of the chronically ill. It began with three days of high fever followed by 8 days of lower-grade fever and extreme fatigue/malaise. About two weeks later he began experiencing nausea, loss of appetite. He had a massively swollen lymph gland and the skin was peeling off his hands and feet.

A myriad of blood tests followed almost of which were normal, except for some mild abnormalities in his red blood cells, hemoglobin and hematocrit and high platelet, monocyte, and high eosinophil counts.

[fright]View attachment 1937 [/fright]An infectious disease specialist believed he was suffering from a coxsackie or similar virus and he was treated with the antiviral medication Zovirax for a week followed by a 10-day course of Amoxicillin.

During September, Jack experienced illness flares which left him pale, lethargic, without an appetite, and with stomach pain at roughly 3-5 day intervals.

ENT and infectious disease specialists ordered ultrasounds which revealed two large lymph nodes the size of golf balls. More blood work which done, all of which came back normal except for the puzzling low hemoglobin, hematocrit levels and a few immune tests.

By now Jack has had approximately seven tests for mononucleosis, two tests for Lyme disease and several tests for herpes and other viruses and he's had his lymph nodes biopsied for lymphoma & other lymph node diseases. All these tests have come back normal.

Jack improved after one of his enlarged lymph nodes was removed, but then relapses and after missing too many classes is finally pulled from school. He's now being home tutored.

In Nov. Jack is referred to a specialist in adolescent medicine who diagnoses him with post-viral fatigue syndrome. (After Jack hits the six month mark in February, he's diagnosed with chronic fatigue syndrome (ME/CFS).Thankfully, he is not referred to psychiatric care but his parents are informed that nothing further can be done. By now Jack is experiencing near constant stomach pain.

Four Diagnoses

When more blood tests, trips to specialists and another biopsy don’t pan out everyone is at a loss until a week at the Rochester Mayo Clinic in March leaves Jack with three diagnoses:
  1. POTS (Postural Orthostatic Tachycardia Syndrome) (53 beats per minute increase upon standing) - POTS occurs when one's heart races during standing
  2. iron deficiency
  3. mild neutropenia
  4. gastric erosion.
Jack is put on metoprolol 25mg twice daily, iron supplements (vitron C – 1 tablet=65mg iron – once daily), & prilosec (once daily) for his gut issues . He is told to eat as much salt as possible, drink 3-4 liters of liquid per day, start cognitive behavioral therapy (once a week), slowly ramp up his exercise program (goal = 30 min of exercise plus 30 min other activity per day) and try to find a way to attend school. The head of his bed is raised 4-5 degrees to help with sleep.

From March through May Jack very slowly improves. He gains a couple of pounds and his stomach pains - his main complaint - are reduced a bit, and he's s sleeping a bit better. He's able to attend two classes at day at school and is doing five minutes of exercise in the morning and 15-20 minutes of walking and jogging on treadmill in the afternoon. He's consistently doing this but exercise is still exacerbating his fatigue.

Despite being on iron supplements for nine weeks his blood ferritin levels (20 ng/ml) are unchanged in May, though, and his neutrophil and WBC levels remain low. When all Jack's pediatrician can do is to recommend three iron tablets a day, Schlanger's are at a standstill.

Iron Man


In July, 2015 Jack meets with a hematologist who puts him on prescription oral iron and tells him to take it with orange juice and in between meals which contain dairy products and eggs. His ferritin levels jump up fifty percent to 30ng/ml over the next 4 weeks and Jack continues to improve.

In the fall he's able to attend 4 classes a day, but despite a month of graduated exercise training (GET) he's still unable to participate in sports.

In Sept in an attempt to get his iron levels higher, Jack begins Venofer iron sucrose infusions His first infusion ) bounces his ferritin levels to 47. After the next one they're at 93. Jack can immediately tell the difference; he's not well but he's starting to play some hockey and he's not getting sick after exercise.

[fleft]View attachment 1938 [/fleft]Since Jack began the infusions (he's had 7 in about 9 months) his serum ferritin levels averaged 66 mg/mL. Note that Jack's iron levels are way above low normal now.

(The Schlanger's considered Fereheme infusions, which they had heard had great results in some POTS patients but went with the Venofer infusions because of possible side effects.)

Jack's first big breakthrough came when he finally was able to get more iron into his system. His levels had gotten up to 30 ug/uL - well above the action point in medicine - but he needed more. The iron infusions alone got Jack to about 80%. He was able to make it through 75% of his normal school day and was regularly doing light exercise without feeling any post-exertional malaise.

Why might iron be so helpful for Jack? Iron drives aerobic energy production - our main means of producing energy. Oxygen is carried to our tissues by hemoglobin which is dependent upon iron. Low iron levels, then, reduce the amount of oxygen that gets delivered to the mitochondria. It's no wonder that anemia is often (but not always) associated with fatigue.

Achieving optimal iron levels has been shown in various studies to improve aerobic ability, endurance, muscle fatigability, restless leg syndrome, as well as cognition including memory, verbal learning and other facets of cognitive functioning.

What Are Your Ferritin Levels?

Jack's iron issues were initially missed because his ferritin, hemoglobin and hemocrit levels were never more than low "normal". It wasn't until he met with the POTS specialists at the Mayo Clinic that iron entered into his equation.

That, of course, brings up the question - what is a healthy serum ferritin level? Jack's experience suggest that normal iron levels in one person might be pathologic in others.

That actually makes some sense given the huge range of iron levels found in humans. Medicine.net defines normal blood ferritin levels for males (12-300 ng/ml) and females (12-150 ng/ml). WebMD's normal ferritin levels are a bit higher (men 18-270 ng/ml, women 18-160 ng/ml) but they note that "a value that falls outside the normal values listed here may still be normal for you or your lab. Medline Plus' are a bit higher (20 to 200 ng/ml; Female: 15 to 150 ng/ml).

[fright]View attachment 1940 [/fright]The American Family Physician (AFP) website, on the other hand, states that "patients with a serum ferritin concentration less than 25 ng per mL (25 mcg per L) have a very high probability of being iron deficient".

The situation is confused by the fact that inflammation or infection can elevate ferritin levels. If chronic inflammation is present, the AFP states that "iron deficiency anemia is likely when the ferritin level is less than 50 ng per mL". In fact if inflammation is present then iron deficiency can only be excluded when ferritin levels are greater than or equal to 100 ng per mL (224.70 pmol per L).

Being female may add another layer to the issue. A study found that women seeing a doctor for fatigue with seemingly normal ferritin and hemoglobin levels benefited greatly from iron supplementation. In a multi-centre, parallel, randomized controlled, closed-label, observer-blinded trial they were given oral ferrous sulfate (80 mg of elemental iron daily; n = 102) or placebo (n = 96) for 12 weeks.

The women on the iron supplements decreased their fatigue by 50% - a statistically significant amount compared to placebo. The authors proposed that women experiencing unexplained prolonged fatigue may be iron deficient if their ferritin values are below 50 μg/L, even when hemoglobin values are seemingly normal (above 12.0 g/dL.). Despite the fact that their ferritin and other measures were in the normal range, the iron supplement increased their women's red blood cell production.

We don't know the ferritin inflection point for Jack - the level at which ferritin really made a difference for him but note that 30 ug/ml was not enough. It wasn't until sucrose iron infusion boosted his ferritin levels above 50 that he really noticed a difference. Jack apparently needs considerably more ferritin than his sister (30 ug/mL) to stay healthy. His ferritin levels now (50's to 100 ug/mL) are similar to his mothers (80 ug/mL). What's healthy for one person may bear little resemblance to what's healthy in another person.

Unfortunately nobody knows at this point whether infections, growth spurts or other factors are kicking off low iron stores - and POTS - in Jack's and other adolescents cases or if they preceded it. Jack's serum ferritin levels prior to getting POTS are unknown.

Nor is clear why iron absorption was such a problem for Jack that infusions were needed. Jack's parents reported that a Dallas hematologist, Dr Birenbaum, who uses Feraham iron infusions clams that most of his POT and cancer patients cannot absorb the oral iron effectively.

Jack's low white blood counts (WBC) (3.5 thous/mcl) and neutrophils (absolute -1092) had been an ongoing concern as well but they rebounded after Jack began the iron infusions. They were normal for five months but during the last five months when Jack has been healthy. Low WBC's and neutrophils were clearly not the issue for Jack. In the presence of robust ferritin levels they seem not to be a problem.

The authors suggest that infections, growth spurts and/or the beginning of menstruation in girls triggered the iron storage problems in many of their participants.

What to do if you have ferritin levels below, say, 50 ug/uL and you are experiencing fatigue, stomach problems and other issues? Perhaps do what Jack did. Try oral iron tablets and then get your blood ferritin levels checked again. ( Jack wasn't able to absorb oral iron well at first.)

If they haven't gone up consider trying a sucrose or other iron infusion. The results in Jack's case were obvious - he quickly felt better.

Taking Iron

Because the absorption of elemental iron is enhanced by an acidic gastric environment taking ascorbic acid (Vitamin C) with iron can help. Foods rich in tannates such as tea, or phytates such as bran and cereal, or pH raising drugs such as antacids, histamine H2 blockers and proton pump inhibitors should be avoided.

Jack's doctor had him taken iron with orange juice and to avoid meals with eggs and . Iron taken on an empty stomach is absorbed best but can cause gastrointestinal upset and constipation. For people who can't break down the coating on iron tablets liquid iron may be best.

Iron Deficiency, Autonomic Nervous System Issues and POTS

Questions concerning the relationship between iron deficiency, orthostatic intolerance and autonomic nervous system dysfunction are not new. Despite growing evidence that iron deficiency commonly occurs in POT iron supplementation is rarely mentioned as a possible treatment. Jane Brody's excellent New York Times Piece on POTS, for instance, does not mention it. Outside of its use with erythropoietin it's not mentioned in DINET's excellent POTS treatment page, in Dysautonomia International's treatment overview

Back in 1994 Biaggioni (who has done work on ME/CFS) found that anemia was common in people who had low blood pressure upon standing (orthostatic hypotension). A very small study the next year also found that autonomic failure was highly associated with anemia and orthostatic intolerance.

[fleft]View attachment 1939 [/fleft]Jajour and Jajour found that 50% of adolescent POTS patients compared to 14% of adolescents in the population at large had low "iron storage" levels (SF < 25 ug/L). Twenty-five percent of adolescent girls were deemed to have iron deficiency (SF< 12ug/L) (compared to 9% of the population at large). Almost half of the young males in the small study were deemed to have anemia. This same group found low iron storage in adolescents with neurally mediated syncope or fainting.

A larger Mayo Clinic study (n=188) examined adolescents with fatigue and/or orthostatic intolerance. The study participants, 75% of whom were female, commonly experienced dizziness upon standing (84%), fatigue (71%), headaches (63%), and nausea (54%). It defined iron deficiency as serum ferritin 12 Kg/L, and low iron storage as serum ferritin 25 Kg/L. Hypovitaminosis D was defined as=25-hydroxyvitamin D levels of e 20 ng/mL.)

Almost 70% of the participants were found to have postural orthostatic tachycardia syndrome (POTS). Sixty-nine percent either had iron insufficiency or low iron stores. Increased heart rates were not associated with low iron but low vitamin D levels were.

People with iron deficient anemia also have reduced heart rate variability and increased sympathetic nervous system activity. (A similar kind reduced HRV is also found in FM and chronic fatigue syndrome (ME/CFS).

A Mayo clinical trial examining the efficacy of iron sucrose infusions in POTS patients with non-anemic iron deficiency slated to end in December of this year should, if it's successful, add iron to the list of generally accepted treatments for POTS.

Causes

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 (both of which have been suggested in ME/CFS) and hypoxia associated mitochondrial dysfunction.

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.

The Nitric Oxide Connection

Jajour and Jajour speculated that reduced iron stores could increase the levels of nitric oxide (NO). The endothelial cells lining the blood vessels release NO to open up or dilate the blood vessels. Increased NO levels have been found in POTS and iron deficiency anemia has been associated with increased NO metabolite levels.

Iron deficiency anemia increases nitric oxide production. Hemoglobin is the main scavenger of nitric oxide, which it turns out, is responsible for dilating the blood vessels. Reduced hemoglobin levels can, therefore, result in dilated blood vessels which fail to constrict enough upon standing to stop blood from pooling in the lower body. This is why fainting is another possible consequence of anemia. Indeed, one research group has linked reduced ferritin levels with "neural mediated syncope" or fainting.

Interestingly, the salt craving in ME/CFS and POTS could derive from salt's ability to reduce endothelial NO levels.

Our single largest reservoir of blood is found in our abdomen. Julian Stewart, who has been studying POTS and ME/CFS for years, believes that the presence of anemia or simply reduced iron stores causes increased nitric oxide production, blood vessel dilation and blood pooling in the abdominal area first. Abdominal or "splanchNic" blood pooling has been found in POTS.

Conclusions

Jack's flu-like onset and his symptoms were typical pretty in POTS patients. He was lucky to go to a center (Mayo Clinic) which correctly diagnosed low normal iron levels as iron deficiency. When oral iron failed to bump up his iron levels sufficiently, Jack's parents turned to iron sucrose infusions. One Jack started those his energy increased dramatically, his stomach problems calmed down, and he was able to return to school and engage in light workouts without suffering from post-exertional malaise.

The kicker with Jack is that Jack's sister and mother and his mother's sister and nephew all test out very much like Jack but all are healthy. They all experience tachycardia upon standing, and they all have poor venous return (their heart isn't getting as much blood as normal). Jack's sister plays three sports, though, and his mother is a CrossFIt instructor. The one difference found thus far is that their ferritin levels are higher than Jack's. Unfortunately we don't know if the Jack's flu triggered a collapse of his ferritin levels.Nor do we know if there are any other differences.

The significant number of people who would test positive for POTS on a tilt table test yet have no symptoms at all, however, suggests that an important factor is missing from a POTS diagnosis. Low ferritin levels that impede oxygen delivery to the tissues could be one missing factor.

Jack is back to 80 or 85% but he's not well yet; he's not the athletic young man he was before and he's not engaging in competitive sports. It turns out that Jack will regain his health but he'll have use a controversial method to do it.

Stay tuned for that in Iron Man Part II: A Young Man Recovers from POTS.
Nitric oxide can cause blood vessel dilation and can be easily measured at low cost in exhaled breath. Has the exhaled nitric oxide ever been carefully studied for POTS and ME/CFS patients? It might be one possible useful biomarker, combined with many others, and may warrant further study. Aerocrine has low cost exhaled NO monitor designed for asthma patients, but might be useful for M.E??
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Interesting. If it has been studied I don't remember it.
Nitric oxide can cause blood vessel dilation and can be easily measured at low cost in exhaled breath. Has the exhaled nitric oxide ever been carefully studied for POTS and ME/CFS patients? It might be one possible useful biomarker, combined with many others, and may warrant further study. Aerocrine has low cost exhaled NO monitor designed for asthma patients, but might be useful for M.E??
 

Linda B

Active Member
When my daughter became ill at 13 (due to a complex interplay of vaccination and virus) her ferritin levels were very low. In Australian readings serum ferritin assay parameters are 10-140. Over 60 is recommended/preferred. Her reading was 30. The doctor tried various types of iron supplementation for over two years without result. This was not good as unbound iron in the system is also not desirable. I would say that we finally had success, without being too radical...oral supplementation with 'iron infused water' sachets from Wales. Worked a treat. Even a friend of mine and her daughter who had been having regular infusions tried it. They have not need infusions since. Some 18 months or more.
Whilst my daughter is still not great after 8 years of this.....she is at least semi functional, and we are thankful for that. I still have hope that there is a light.....Good luck to everyone going through this, I hope you have some support.
 

Issie

Well-Known Member
Nitric oxide can cause blood vessel dilation and can be easily measured at low cost in exhaled breath. Has the exhaled nitric oxide ever been carefully studied for POTS and ME/CFS patients? It might be one possible useful biomarker, combined with many others, and may warrant further study. Aerocrine has low cost exhaled NO monitor designed for asthma patients, but might be useful for M.E??
There has been alot of research in regard to NO and POTS.
Here's one article:
http://emedicine.medscape.com/article/902155-overview#a2

I was NO tested by Mayo during a pulmonary workup.

I'm glad that iron is helping this young man, but it's not true for all of us. Hemochromatosis runs in my family. My sis who has severe CFS has to be constantly watched for it. She runs high iron levels.

EPO is a med tried for some POTS people when nothing else seems to help. I know of one person who it was helping who was very severe. I lost track of him, I hope he is doing better still.

Issie
 

Linda B

Active Member
There has been alot of research in regard to NO and POTS.
Here's one article:
http://emedicine.medscape.com/article/902155-overview#a2

I was NO tested by Mayo during a pulmonary workup.

I'm glad that iron is helping this young man, but it's not true for all of us. Hemochromatosis runs in my family. My sis who has severe CFS has to be constantly watched for it. She runs high iron levels.

EPO is a med tried for some POTS people when nothing else seems to help. I know of one person who it was helping who was very severe. I lost track of him, I hope he is doing better still.

Issie
Hi Issie,
My brother in law with hemochromotisis was told to drink tea with every meal to reduce the iron uptake. Seems to help him. Not sure if you already knew this but better to hear it twice perhaps than not at all. A simple, natural aid.
 

Tammy7

Well-Known Member
My take on this is that the pathogen he is dealing with is robbing him of iron. It's fuel for viruses.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
My take on this is that the pathogen he is dealing with is robbing him of iron. It's fuel for viruses.
There is a hypothesis that the body sequesters iron to make it unavailable to pathogens when an infection occurs. I came onto as I was finishing up the blog and wasn't really able to get into it. I didn't understand how to fit that with the idea that inflammation often increases ferritin levels.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
There has been alot of research in regard to NO and POTS.
Here's one article:
http://emedicine.medscape.com/article/902155-overview#a2

I was NO tested by Mayo during a pulmonary workup.

I'm glad that iron is helping this young man, but it's not true for all of us. Hemochromatosis runs in my family. My sis who has severe CFS has to be constantly watched for it. She runs high iron levels.

EPO is a med tried for some POTS people when nothing else seems to help. I know of one person who it was helping who was very severe. I lost track of him, I hope he is doing better still.

Issie
Do you remember what your NO levels were?
 

marta

New Member
There is a hypothesis that the body sequesters iron to make it unavailable to pathogens when an infection occurs. I came onto as I was finishing up the blog and wasn't really able to get into it. I didn't understand how to fit that with the idea that inflammation often increases ferritin levels.
i believe that lactoferrin makes iron unavailable to pathogens but leaves it available to the body
 

HCJ

New Member
This is fascinating to me. My daughter has an appointment in autonomic neurology at the Mayo Clinic in a month. She is being seen by a professor who specializes in POTS among other things (peripheral neuropathy being a key reason my daughter is going to Mayo).

After I read this article, I went back and checked her blood ferritin levels and last test, she was at 20. She was also low-normal-low on hemoglobin and hematocrit for the last year--just hugging the lowest end of "normal" consistently. I don't know whose running the study at Mayo, but I'm going to ask them to run my daughter's labs on all the ferritin and related issues and see if she might qualify to try this therapy. I realize that it is experimental, but perhaps insurance would take Mayo's word that it is worth trying.

Thanks for posting this, Cort. I would have never even known to ask!
 

Veet

Well-Known Member
My take on this is that the pathogen he is dealing with is robbing him of iron. It's fuel for viruses.
Natasha Campbell-McBride, who developed GAPS diet, says bacteria eat out iron. The year before I switched to GAPS diet, my worst year, I took many courses of Floradix iron, a very bioavailable form. My iron levels kept returning low. Clearly the critters were eating it, not my body.
 

Issie

Well-Known Member
Do you remember what your NO levels were?
I don't remember. I didn't have asthma at the time though. I can look up my records.
L-Arginine can increase NO. Some POTS people have found it helpful if they need to vasodilate rather than constrict. It helps blood flow. But it may be necessary to use Lysine if you have herpes issues as it may trigger a flare.

Issie
 

Issie

Well-Known Member
Iron, magnesium and calcium are known to increase biofilm. Some Lyme docs advise against using those minerals as it will make it harder to eliminate the pathogens if the biofilm is too strong. Also, those minerals can be low due to being used this way. So may be good to get checked.

Issie
 

Issie

Well-Known Member
Hi Issie,
My brother in law with hemochromotisis was told to drink tea with every meal to reduce the iron uptake. Seems to help him. Not sure if you already knew this but better to hear it twice perhaps than not at all. A simple, natural aid.
Thanks, I passed this to my sis.
 

VLynx

Member
My latest ferritin was 7 ng/ml! Been dealing with iron deficiency for a while, as I have injury to small bowel from taking NSAIDs, which causes my bowel to bleed and lose protein. Thank you for this article, as it raises for me the question of what levels of iron I should be trying to reach with my supplementation. The issue of pathogens feeding off of iron is also concerning of course, but if my ferritin should be much higher I may need more aggressive supplementation.

I got my ferritin up to 26 ng/ml in November 2015 with aggressive oral supplementation (325 mg FeSO4 three times a day with vitamin C). It dropped to 7 by April 2016 when I stopped taking iron to see if I still needed it (having stopped taking NSAIDs for over 6 months). Back in March 2014, early in the small bowel injury story, my ferritin was 44. The highest I have on record is 50 in 1997 (four years after I became ill and just before my 85% recovery that lasted about 10 years).
 

Issie

Well-Known Member

This doc addresses low iron.

I've listened to several of his talks on no grain and think it's worth a try. It will be hard, but maybe worth it.

Issie
 

Veet

Well-Known Member

This doc addresses low iron.

I've listened to several of his talks on no grain and think it's worth a try. It will be hard, but maybe worth it.

Issie
I've been no-grain for several years now. Works great for me. Luckily I'm not a social eater, that is, I don't socialize. That would be hard. You might be interested in these pieces about gluten cross-reactivity. Removing gluten relieved my terrible neurological symptoms by about 50% (a guess.) I've found that the cross-reactive substances also cause me problems, so no grains.

http://www.thepaleomom.com/2013/03/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up.html
http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods
 

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