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

Issie

Well-Known Member
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/...re-eating-gluten-even-after-giving-it-up.html
http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods
I found it interesting that all grains have gluten. When they say gluten free they are talking about one type. There are hundreds and we may be reacting to one of the others that isn't tested. I know I don't do well with rice. He says we need to look at our meds and supplements too. This would include corn and sugar. He also said quinoa has 14 proteins similiar to wheat and if we react to wheat, we may react to quinoa. He advises against it. It will be hard to be totally grain free. But I want to try it and see how it goes. I think I have some sort of gut ecology issue going on right now. And I for sure have autoimmune issues. So we will see........

Issie
 
Last edited:

Veet

Well-Known Member
@Issie My final discovery in trying to eliminate all sources was the corn starch in my thyroid preparation. When I quit, the persistent sores I'd been experiencing finally resolved.
 

Issie

Well-Known Member
@Issie My final discovery in trying to eliminate all sources was the corn starch in my thyroid preparation. When I quit, the persistent sores I'd been experiencing finally resolved.
Which one are you taking? I tried Armor and it wasn't good. I think it must have something in it. I'm trying just iodine right now. Had been using kelp, but it wasn't enough.

Issie
 

Lissa

Well-Known Member
@Issie I have T3 compounded by a pharmacist.

@Veet - if you don't mind my asking, what is your pharmacist using for a substitute filler?

I'm also taking compounded T3, and I think I'm reacting to the current filler which is microcrystalline cellulose. I've requested they switch to ginger but haven't received my new batch yet.

Just curious what is working (and GF, soy free, dairy free, yada yada) for other people? Thanks!
 

Veet

Well-Known Member
@Issie Here's from the chemist: The filler that we use in T3 is commonly called Avicel.
It also generally contains Methocel for SR.( slow release)
 

Lissa

Well-Known Member
@Issie Here's from the chemist: The filler that we use in T3 is commonly called Avicel.
It also generally contains Methocel for SR.( slow release)

Thanks @Veet -- Avicel is what's in my current prescription. It contains the microcrystalline cellulose that I think I'm reacting to. I'm still waiting for the new batch with the ginger substitute to get here.

Didn't mean to hijack the thread, but was excited to hear that I wasn't the only one with ME/CFS who also had problems with T3 fillers! (At least I think that's the problem...)
 

Raba

Member
Infection Fells Teenager

In August 2014, a formerly very healthy and active 13 year old named Jack Schlanger entered the realm of the chronically ill. His 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. The skin was 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]View attachment 1937 [/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


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]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 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 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 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]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, 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 ug/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 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.

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]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 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.
Got slow release tabs from store. Whe I first took it I noticed warmth. All the way to my skin and fingers. My heart felt lighter and I noticed my mood improved. Mind is clrarer. Less fatigue. My body temp went up. Was not expecting immediate effects. Heppens every time I take it.

The benefits persit at day 6.

Maybe this is why whey protein has helped me greatly the last 10 years. It contains lactoferrin. But it also increases my inflamation. So it was a double sword. I was also a sudden onset , 23 years ago.

I had been on heavy antiacids and other acid reducers for several months before flu like onset onset.

Never tried iron supps before because my levels were within range.

Will keep u posted.
 
Erm, @Cort, at the risk of sounding fussy, the unit of measurement for blood ferritin is either ng/ml or ug/L or mcg/L.

In your article and poll you have a number of misprints, e.g.: ug/mL, ug/uL and Kg/L (which would make the blood denser than molten metal! :wacky:)

You had me puzzling for a while there; hard enough to be sure I've got the units right as it is, however familiar I should be from my degree level science. Mostly people ignore units, but sometimes different labs switch between L and dL, for example, making the number just a factor of 10 out, so not necessarily going to be massively out of range and obvious that one has a spurious value.

Interesting article, as always. :)
 
Hmm, I wonder if there is a link here:

"The body normally keeps levels of free iron in the blood low to keep bacteria dormant and block their growth."

"...recent DNA sequencing methods reveal that each millilitre of blood in fact contains around 1000 bacterial cells.

These bacteria are usually dormant. But they can be revived when iron becomes available in the blood, and begin secreting lipopolysaccharides (LPS) – molecules on their cell walls that are recognised by the immune system and stimulate inflammation."

From New Scientist article, today: https://www.newscientist.com/articl...blood-could-be-culprit-in-countless-diseases/

It's talking about diseases like Alzheimer's and rheumatoid arthritis, where serum iron levels (and inflammation) are raised. So what if low ferritin, in cases like the chap in your article, are part of the body's microbial self defenses, similar to Naviaux's CDR, causing fatigue side effects, possibly getting stuck on for too long, indefinitely...?

Oh, and the article has this lovely microscope image of a bacterial cell wall and it's LPS (just for the sake of the prettiness):
[bimg=no-lightbox]https://d1o50x50snmhul.cloudfront.net/wp-content/uploads/2016/09/06171010/g4600103-gram-negative_bacterial_cell_wall-spl.jpg[/bimg]
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hmm, I wonder if there is a link here:

"The body normally keeps levels of free iron in the blood low to keep bacteria dormant and block their growth."

"...recent DNA sequencing methods reveal that each millilitre of blood in fact contains around 1000 bacterial cells.

These bacteria are usually dormant. But they can be revived when iron becomes available in the blood, and begin secreting lipopolysaccharides (LPS) – molecules on their cell walls that are recognised by the immune system and stimulate inflammation."

From New Scientist article, today: https://www.newscientist.com/articl...blood-could-be-culprit-in-countless-diseases/

It's talking about diseases like Alzheimer's and rheumatoid arthritis, where serum iron levels (and inflammation) are raised. So what if low ferritin, in cases like the chap in your article, are part of the body's microbial self defenses, similar to Naviaux's CDR, causing fatigue side effects, possibly getting stuck on for too long, indefinitely...?

Oh, and the article has this lovely microscope image of a bacterial cell wall and it's LPS (just for the sake of the prettiness):
[bimg=no-lightbox]https://d1o50x50snmhul.cloudfront.net/wp-content/uploads/2016/09/06171010/g4600103-gram-negative_bacterial_cell_wall-spl.jpg[/bimg]
I agree - the idea that the body may be sequestering iron to keep it from bacteria is really intriguing. I just came across it as I was ending the blog...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Erm, @Cort, at the risk of sounding fussy, the unit of measurement for blood ferritin is either ng/ml or ug/L or mcg/L.

In your article and poll you have a number of misprints, e.g.: ug/mL, ug/uL and Kg/L (which would make the blood denser than molten metal! :wacky:)

You had me puzzling for a while there; hard enough to be sure I've got the units right as it is, however familiar I should be from my degree level science. Mostly people ignore units, but sometimes different labs switch between L and dL, for example, making the number just a factor of 10 out, so not necessarily going to be massively out of range and obvious that one has a spurious value.

Interesting article, as always. :)
Thanks - everyone was using different measurements and I apparently intermixed them. Blood that is denser than molten metal would not be good at all. I'll fix it up= appreciate your pointing that out.
 

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