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jenchaney727
@jenchaney727

Posts: 13
Joined: May 04, 2016

Ferrlecit Infusions for Ferritin Iron Deficiency

Posted by @jenchaney727, Sep 22, 2016

I recently started these Ferrlecit infusions and have been so amazed at the things it has helped that I had no idea were related to this type of Iron deficiency, and had been seeing SO many doctors and other meds/supplements and multiple vein procedures for, over the last 10 years, such as severe swelling in left leg. So far, I’ve only done weekly for 4 weeks and my energy level is amazing for about 3-4 days after each treatment. He now has me off the treatment for two weeks, so he can evaluate my blood levels and see how well it is maintaining. I have absorption issues due to resected colon from Carcinoid tumor as well as genetic deficiencies that complicate all of my conditions. I’m curious about experiences of others who have had this treatment. Thanks in advance!

REPLY

Welcome Jen. Thanks for starting this discussion on iron deficiency. I’d like to bring fellow members in the conversation. @johnwburns @nadine66 @smokeys @lamerex4 @rosemarya and @michellecrcrn have all recently talked about the role iron plays in their health. @midgette posted quite some time ago about taking ferritin infusions. Have any of you experiences to share with Jen?

Jen, can you tell us more about the genetic deficiencies that complicate the conditions?

Liked by jenchaney727

Less significant iron deficiencies (ten percent) may be under diagnosed in young adult females; if doctors have difficulty diagnosing more severe absorption deficiencies, is the medical community addressing iron deficiencies adequately across the range of iron deficiencies from multiple causes, and if so, is this circumstance related to gender and health.

Liked by jenchaney727

Hi, welcome, glad to hear that you found something that works.
What do you see as differentiating a “Ferritin Iron Deficiency” from the usual iron deficiency? I know that some people do not respond to oral iron supplementation and do respond to injections but the “why” escapes me for now. Just trying to keep my terminology straight.
In looking up Ferrlecit it says:
“Ferrlecit is an intravenous (IV) iron replacement product for the treatement of iron deficiency anemia in patients 6 years and older with chronic kidney disease receiving chronic hemodialysis (HD) and supplemental epoetin therapy.”
Is that your situation?
Iron deficiency, like a lot of things, hits the elderly harder, and also special populations like those with heart failure and restless legs. It is associated with the general condition called “frailty”.
“Current aspects of frailty
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4803240/
Results from recent studies increasingly suggest an association between immunosenescence, inflammation, and the development of frailty: The age-associated overall change of the immune system is called immunosenescence. According to Franceschi et al,35 inflammaging is part of the immunosenescence process, consisting of an age-associated upregulation of the inflammatory response, resulting in a low-grade proinflammatory state.4 This proinflammatory state is characterized by increased levels of inflammatory cytokines, such as IL-6, IL-1, TNFα, and IFNγ. These cytokines have been shown to rise with age36 and to be associated with the development of ACI32 and other age-associated diseases.37 The process of immunosenescence has been shown to result in increased vulnerability to infectious diseases as well as to susceptibility of inflammation-associated pathologies in connection with, eg, chronic kidney disease, cardiovascular disease, Alzheimer’s disease, or diabetes mellitus.2,4,38 A study by Chang et al2 on the association between inflammatory disease burden and frailty revealed that a higher inflammatory disease count favors the occurrence of frailty in older patients. The consequence of the constant proinflammatory state does not only increase susceptibility to age-related diseases but also makes older patients prone to faster progression of all age-associated diseases.
Before realization of these biochemical insights into the pathogenesis of frailty, the syndrome of frailty experienced a more clinical approach. In the context of geriatrics, frailty describes a decline in physical strength, lean body mass, and power, associated with decreased balance, decreased walking performance, and low activity.”

From the same article
“Anemia is a frequent finding in older patients and has been shown to be associated with increased physical impairment,9,10 frailty,11 cognitive decline,12 depression,13 and mortality.”

So iron deficiency is a broad topic with broad implications. Anything you can add to help other folks, like myself for instance, who have had a treatment resistant anemia my whole adult life, would be very useful

@colleenyoung

Welcome Jen. Thanks for starting this discussion on iron deficiency. I’d like to bring fellow members in the conversation. @johnwburns @nadine66 @smokeys @lamerex4 @rosemarya and @michellecrcrn have all recently talked about the role iron plays in their health. @midgette posted quite some time ago about taking ferritin infusions. Have any of you experiences to share with Jen?

Jen, can you tell us more about the genetic deficiencies that complicate the conditions?

Jump to this post

Thank you all for the responses so far. To answer a few questions in one post, let me start by saying I’m learning as I go, and I don’t yet fully understand the difference between Ferritin versus other Iron deficiency (maybe there isn’t any?). I just know my Ferritin level was down to 7 and they quickly started the IVs. My other “regular” Iron lab panel had some anomalies, but nothing was horribly out of range, which is why I assume this hasn’t been caught before now. I will be learning more from my hematologist in two weeks. I’m 46 years old, and my genetic issues include being iGA deficient, so I’m very prone to bacterial infections. On the heart side, I am positive for both the APOE 388 T>C and the 526 C>T mutation, which they say makes me high risk for Hyperlipidemia/Atherosclerotic Cardiovascular Disease. My genotype is APOE e2/e4 and my biological father passed away at 62 with massive heart attack as well as several family members with heart disease.

I had severe case of mono when I was 10 years old and recent blood work shows I have chronic Epstein Barr Virus as a result of it never fully going away. This diagnosis is debated and not supported by Infectious Disease doctors, but my PCP and other providers firmly believe it has contributed to my weak immune system and want to start me on a supplement regemind. I have minimal Hypothyroidism and have many thyroid nodules, which resulted in a right thyroidectomy and they suspect Hashimotos, but test are inconclusive. I’ve had severe endometriosis my whole life, with multiple surgeries to ablate it and finally a partial hysterectomy last year.

My Carcinoid NET tumor was discovered 5 years ago and it was an atypical case that was only found my me demanding to have a colonoscopy to prove that I wasn’t “just having IBS again”. They found a very small 2 cm tumor in my Ilium and they thought for sure it was only Stage 1. During surgery to remove that section of my colon, they removed 19 surrounding lymph nodes found it had already spread to 2 of them, which shocked the doctors. The tumor never showed up on any scans and none of my blood work was ever elevated like in typical cases. This iron deficiency discovery is a similar situation where it was my insisting on more tests because my fatigue was getting so bad, sores on tongue increasing, and freezing hands/feet. I’ve had 2 blood clots in my legs, and one was a DVT. We’ve thought the swelling in my left leg was just due to damaged veins, which I do have from the blood clots, but turns out the Iron infusions have resolved the swelling! I think I’m more excited about that than the reduced fatigue!

I think that about covers most of the important history, and the biggest lesson learned is to listen to my body and don’t give up when I know I’m not fully being heard.

@johnwburns

Hi, welcome, glad to hear that you found something that works.
What do you see as differentiating a “Ferritin Iron Deficiency” from the usual iron deficiency? I know that some people do not respond to oral iron supplementation and do respond to injections but the “why” escapes me for now. Just trying to keep my terminology straight.
In looking up Ferrlecit it says:
“Ferrlecit is an intravenous (IV) iron replacement product for the treatement of iron deficiency anemia in patients 6 years and older with chronic kidney disease receiving chronic hemodialysis (HD) and supplemental epoetin therapy.”
Is that your situation?
Iron deficiency, like a lot of things, hits the elderly harder, and also special populations like those with heart failure and restless legs. It is associated with the general condition called “frailty”.
“Current aspects of frailty
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4803240/
Results from recent studies increasingly suggest an association between immunosenescence, inflammation, and the development of frailty: The age-associated overall change of the immune system is called immunosenescence. According to Franceschi et al,35 inflammaging is part of the immunosenescence process, consisting of an age-associated upregulation of the inflammatory response, resulting in a low-grade proinflammatory state.4 This proinflammatory state is characterized by increased levels of inflammatory cytokines, such as IL-6, IL-1, TNFα, and IFNγ. These cytokines have been shown to rise with age36 and to be associated with the development of ACI32 and other age-associated diseases.37 The process of immunosenescence has been shown to result in increased vulnerability to infectious diseases as well as to susceptibility of inflammation-associated pathologies in connection with, eg, chronic kidney disease, cardiovascular disease, Alzheimer’s disease, or diabetes mellitus.2,4,38 A study by Chang et al2 on the association between inflammatory disease burden and frailty revealed that a higher inflammatory disease count favors the occurrence of frailty in older patients. The consequence of the constant proinflammatory state does not only increase susceptibility to age-related diseases but also makes older patients prone to faster progression of all age-associated diseases.
Before realization of these biochemical insights into the pathogenesis of frailty, the syndrome of frailty experienced a more clinical approach. In the context of geriatrics, frailty describes a decline in physical strength, lean body mass, and power, associated with decreased balance, decreased walking performance, and low activity.”

From the same article
“Anemia is a frequent finding in older patients and has been shown to be associated with increased physical impairment,9,10 frailty,11 cognitive decline,12 depression,13 and mortality.”

So iron deficiency is a broad topic with broad implications. Anything you can add to help other folks, like myself for instance, who have had a treatment resistant anemia my whole adult life, would be very useful

Jump to this post

Hi, John! I posted more details about my history and conditions in another response so hopefully you can see it. This is interesting info you have shared. I’m almost 46 years old and I honestly don’t know the difference in “Ferritin Iron Deficiency” from the usual iron deficiency, and that’s part of the reason I started this topic. All I know is that I’ve had my “regular” iron levels checked and they’ve never raised a concern. It was my severely low Ferritin level of 7 that caused the concern. Since I was already established with an Oncologist for my Carcinoid, he’s now being my Hematologist and he just immediately started the infusions. I haven’t actually gotten to meet with him to fully understand it all. I meet with him for a follow up on Oct 6th and will post more then! I have to go these next 3 weeks without any infusions, so he can test my blood again and see if it’s holding. That makes me sad as I worry I will start to feel weak and have leg swelling come back. Time will tell! I really appreciate your sharing that great info!

@colleenyoung

Welcome Jen. Thanks for starting this discussion on iron deficiency. I’d like to bring fellow members in the conversation. @johnwburns @nadine66 @smokeys @lamerex4 @rosemarya and @michellecrcrn have all recently talked about the role iron plays in their health. @midgette posted quite some time ago about taking ferritin infusions. Have any of you experiences to share with Jen?

Jen, can you tell us more about the genetic deficiencies that complicate the conditions?

Jump to this post

@hopeful33250 I’m tagging you on this conversation. I think you’ll want to follow along and to meet @jenchaney727 fellow NETs member.

@johnwburns

Hi, welcome, glad to hear that you found something that works.
What do you see as differentiating a “Ferritin Iron Deficiency” from the usual iron deficiency? I know that some people do not respond to oral iron supplementation and do respond to injections but the “why” escapes me for now. Just trying to keep my terminology straight.
In looking up Ferrlecit it says:
“Ferrlecit is an intravenous (IV) iron replacement product for the treatement of iron deficiency anemia in patients 6 years and older with chronic kidney disease receiving chronic hemodialysis (HD) and supplemental epoetin therapy.”
Is that your situation?
Iron deficiency, like a lot of things, hits the elderly harder, and also special populations like those with heart failure and restless legs. It is associated with the general condition called “frailty”.
“Current aspects of frailty
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4803240/
Results from recent studies increasingly suggest an association between immunosenescence, inflammation, and the development of frailty: The age-associated overall change of the immune system is called immunosenescence. According to Franceschi et al,35 inflammaging is part of the immunosenescence process, consisting of an age-associated upregulation of the inflammatory response, resulting in a low-grade proinflammatory state.4 This proinflammatory state is characterized by increased levels of inflammatory cytokines, such as IL-6, IL-1, TNFα, and IFNγ. These cytokines have been shown to rise with age36 and to be associated with the development of ACI32 and other age-associated diseases.37 The process of immunosenescence has been shown to result in increased vulnerability to infectious diseases as well as to susceptibility of inflammation-associated pathologies in connection with, eg, chronic kidney disease, cardiovascular disease, Alzheimer’s disease, or diabetes mellitus.2,4,38 A study by Chang et al2 on the association between inflammatory disease burden and frailty revealed that a higher inflammatory disease count favors the occurrence of frailty in older patients. The consequence of the constant proinflammatory state does not only increase susceptibility to age-related diseases but also makes older patients prone to faster progression of all age-associated diseases.
Before realization of these biochemical insights into the pathogenesis of frailty, the syndrome of frailty experienced a more clinical approach. In the context of geriatrics, frailty describes a decline in physical strength, lean body mass, and power, associated with decreased balance, decreased walking performance, and low activity.”

From the same article
“Anemia is a frequent finding in older patients and has been shown to be associated with increased physical impairment,9,10 frailty,11 cognitive decline,12 depression,13 and mortality.”

So iron deficiency is a broad topic with broad implications. Anything you can add to help other folks, like myself for instance, who have had a treatment resistant anemia my whole adult life, would be very useful

Jump to this post

Glad to share what I have but I can’t give you any insight into your overall situation since there are gaps. Ferritin, along with some other tests, is a standard measure of iron deficiency as reflected in the status of your iron stores. Low ferritin is not a separate type of deficiency but rather a reflection of the degree of that deficiency. Conversely it can be a useful metric when looking for iron overload or anemia of chronic disease, the most common mimic of iron deficiency.
http://www.mayoclinic.org/tests-procedures/ferritin-test/basics/definition/prc-20014449
So did your doctor call this out as a “ferritin iron deficiency” in contrast to an iron deficiency and that’s why you needed infusions rather than standard oral iron therapy?
Since ferritin is a measure of iron storage I looked at Iron storage diseases to see if there was one where the body would not store it and couldn’t find one. The covers is usually true, it stores too much.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2030637/
So, the only situation that I can link to some need to go right to iron infusions is in hemodialysis as I mentioned earlier and apparently that’s not you.
Apologies in advance if I already asked but did you try adequate levels of oral iron therapy, possibly multiple forms?
At the end of the day its what works, so it this has rescued you from chronic symptoms its something worth taking seriously.
This meta analysis seems to agree, but for patients with absorption issues.
http://www.jwatch.org/na32026/2013/10/31/intravenous-vs-oral-iron-patients-with-anemia
“In 22 trials (3300 participants), IV iron significantly lowered the need for red-cell transfusion compared with oral iron or no iron (relative risk, ≈0.8). Effects were larger in patients with low baseline ferritin concentrations and were enhanced by concurrent use of erythropoiesis-stimulating agents. In 24 trials (4400 participants), IV iron did not lead to excess mortality but did increase incidence of all-cause infection compared with oral iron (RR, 1.6) or no iron (RR, 1.3).”

Hope this helps

@colleenyoung

Welcome Jen. Thanks for starting this discussion on iron deficiency. I’d like to bring fellow members in the conversation. @johnwburns @nadine66 @smokeys @lamerex4 @rosemarya and @michellecrcrn have all recently talked about the role iron plays in their health. @midgette posted quite some time ago about taking ferritin infusions. Have any of you experiences to share with Jen?

Jen, can you tell us more about the genetic deficiencies that complicate the conditions?

Jump to this post

Also Jen, please meet other Connect members, like Teresa, who are sharing about Carcinoid NETs here http://mayocl.in/2cK4PdN. Zebras in a friendly herd. 🙂

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