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arhayw
Member in Phase 3
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Posted: Wed Mar 2nd, 2005 15:40 |
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Trevor has said, "Mild 'Anemia' is expected in the Th1 diseases, as inflammatory macrophages accrete ferritin. Supplementation usually doesn't correct the 'anemia' and it feeds the inflammation"
http://tinyurl.com/9cxvu
This is interesting to me because as long as I can remember I've battled anemia. My anemia has probably gone past the "mild" description, but I am wondering if the ongoing recurrences can be attributed to Th1 causes.
I have just received word back on my recent lab work that I am anemic again, so of course they want me to start up the iron.
Supplementation has been a trial in itself - the havoc it wreaks on my digestive system is enough to make me gun-shy.
What I would like to know is: Am I doing more harm than good by supplementation if I am really just feeding the inflammatory macrophages?
Thanks for your help,
Renee
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CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D30(Nov07)25D24(Mar08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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Margo
Member Advocate
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Posted: Thu Mar 3rd, 2005 22:28 |
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Renee,
People with inflammatory diseases are often slightly anemic. My doctor called it the anemia of inflammation. She is okay without supplementation at this point, particularly since my daughter's low iron levels are pretty stable.
As you know, Dr. Marshall has suggested that supplementation merely feeds the inflammation. Perhaps if would help if you share a few articles with your doctor.
Here are links to a few articles:
http://tinyurl.com/6mbur
http://tinyurl.com/3jomv
http://tinyurl.com/5vg8n
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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arhayw
Member in Phase 3
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Posted: Wed Apr 6th, 2005 15:00 |
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Margo et al,
Thanks for the articles and input. It has been about a month and I have not gotten around to going out to buy the iron my doc told me to take.
I find that I am having problems with constipation. I do take MOM that helps, but if I miss a dose utter misery ensues. As I mentioned before, this makes me gun-shy of taking iron which has in the past created constipation problems itself.
The bigger reason I am hesitating however is that I don't want to feed those nasty critters that I'm at war with! I find that as I have started Phase 2 (and to some degree before phase 2) my weakness seems to be increasing rapidly to the point that even brushing my teeth seems a Herculean effort.
Just lying in bed last night I felt as though my lifeblood was being drained out of me. Can I chalk this up to herxing and regard my low iron levels as symptoms of my disease that will correct on the MP? Or do I need to risk feeding the very bacteria that is making me sick in order to get my iron levels back up?
Still in a dilemma,
Renee
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CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D30(Nov07)25D24(Mar08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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Belinda
Research Team
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Posted: Wed Apr 6th, 2005 18:57 |
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arhayw,
This article indicates that one of the potential *benefits* of the anemia of chronic disease is that bacteria are being starved of the iron essential for their proliferation.
Bacterial pathogens, however, sequester iron from the host so it is available for their own use and reproduction. If we use iron supplements, we will be providing iron not only for us (the host) but also for our parasitic pathogens -- who will in turn hoard the iron from us.
The fatigue from chronic disease is a common symptom that will resolve if you stick with the protocol. It will grdually get better, but it may be one of your longer-lasting symptoms. The best thing is to persevere and treat the root cause of disease because once the bacteria are killed off, your iron will be available for your own body once again.
Belinda
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arhayw
Member in Phase 3
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Posted: Wed Apr 6th, 2005 19:36 |
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Many thanks, Belinda!
What you said really resonates with my gut feeling in the matter but I didn't/don't want to be a loose canon or a fool who refuses to listen to sound advice.
I also found the following info on the Iron Disorders Institute website:
"Hemoglobin and serum ferritin are the most common ways to test for anemia. A new test called serum transferrin receptor is a good way to determine iron deficiency anemia because this test is not affected by inflammation."
My doc has agreed that this test might be helpful clearing up the matter. She will also be reading these posts and will help me decide the best plan of action.
Again, I appreciate your time and research,
Renee
____________________
CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D30(Nov07)25D24(Mar08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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arhayw
Member in Phase 3
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Posted: Mon Jun 6th, 2005 17:05 |
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Hello again.
I wasn't able to find a lab that will do the transferrin receptor test. I have still not taken any iron supplementation yet - though I did buckle and try to get the prescription [for a better tolerated form of iron] filled. There have been numerous delays trying to get the "right kind" of iron and I am hardly able to do anything at all these days.
My fatigue and weakness are constant and I rarely scrape myself off my bed (personal hygiene has gone down the drain!)
The delays in getting the iron supplement have given me time to question my decision to buckle and take the iron. I really want to just hang in there and let the protocol do its work but...
*here is the crux*:
is there a point at which iron levels can be too low? If so, what is that threshold? Is it reasonable that I should be so weakened all the time - that is, without periods of improvement?
(I did have one day last week where I felt among the living. It had been three weeks since my last 1/8 Z dose. The week before, when I was scheduled to take the next Z dose, I had meningitis-type symptoms {fever, headache, fluish, fatigue, and extreme prolonged neck pain} and postponed the dose for one week.)
Again, my main question is: can iron become too low while on the MP?
Thanks,
Renee
PS - I have asked my doc a couple times to call Dr M and discuss this with him but I don't think she has HEARD me yet.
My last blood results:
Iron 56 (range 80-180mcg/dL)
If you need any other results, I probably have them - I just didn't want to include a bunch of irrelative info.
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CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D30(Nov07)25D24(Mar08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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Meg Mangin R.N.
Research Team
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Posted: Thu Jun 9th, 2005 03:35 |
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Renee,
We do not know how low is too low for iron stores to go. I suspect your doctor is not going to be happy until your iron is within the normal range. If you decide to supplement I suggest that you retest frequently to maintain the level at the bottom of the normal range.
The fact that you had some relief from your overwhelming fatigue suggests that the Herxheimer reaction is a factor.
Best,
Meg
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kathleen
inactive member
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Posted: Thu Jun 9th, 2005 20:36 |
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One of my doctors is also very concerned about my anemia.
My iron is within range - 74 (35 - 175)
However, my RBC is low - 2.99 (3.80 - 5.10)
Hemoglobin low - 9.3 (11.7 - 15.5)
Hematocrit low - 27.1 (35.0 - 45)
These levels were virtually the same in early April and at the end of May.
My cardiologist isn't too alarmed since Dr. Marshall says to expect some anemia. I haven't been able to find any information an what is considered mild and what is extreme anemia. I wonder if some of my palpatations and "heart beating in my ears" is from the anemia?
About the constipation - I use a prescription powder called Miralax that is wonderful. No taste, no gas. Just mix it is water and presto! I've been using it for several years with no need to increase dose. And my doctor says that it's benign, doesn't absorb vitamins or nutrients.
Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Meg Mangin R.N.
Research Team
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Posted: Thu Jun 9th, 2005 23:06 |
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Kathleen,
Your symptoms are more likely due to the Herxheimer reaction than your anemia. Your cardiologist is right not to be alarmed.
Miralax is a laxative that should be used short-term and only occasionally to avoid laxative dependance and electrolyte imbalance.
Hang in there,
Meg
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arhayw
Member in Phase 3
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Posted: Thu Jun 23rd, 2005 15:11 |
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Hello all,
My PCP sent me to a Hematologist (Dr. C) to "manage" the anemia. Dr. C did some more bloodwork and when I went in for the follow up he told me that I did not have iron-deficiency anemia (my PCP said I did) but that it was anemia of chronic disease USUALLY SEEN IN CASES OF CHRONIC INFLAMMATION. Hah! If I had the energy, I would have been jumping for joy at this vindication!
He said I am a mystery (because I look fine but bloodwork says I'm not), but he is willing to take all the time and research needed to figure out what the underlying problem is, so I've begun to feed him with some MP info.
He has cancelled any iron supplementation and is sending me for consult to an infectious disease doctor - any suggestions for tests to request are welcome.
Thanks to all for your patient help,
Renee
____________________
CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D30(Nov07)25D24(Mar08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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Meg Mangin R.N.
Research Team
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Posted: Fri Jun 24th, 2005 01:45 |
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Renee,
Thanks for letting us know that your hematologist confirms what Dr. Marshall has been saying all along. Anemia is common in chronic Th1 inflammation. My hematocrit and hemoglobin have been borderline low for years. And I had a brief episode of non-iron-deficiency anemia that could only be explained by a Herxheimer reaction.
It seems to me that anemia might be a red flag for doctors to investigate further the diagnosis of Th1 inflammatory disease. I have a Mayo Clinic hematologist. Despite low lymphocytes, she did not consider a chronic inflammatory disease. She is intrigued by the Marshall Protocol and didn't object to me following it. She's told me that no one ever has a reduction when their immunoglobin is elevated. They can only hope that it doesn't continue to elevate. I'm hoping to prove her wrong eventually. Wouldn't she be surprised.
Best,
Meg
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Belinda
Research Team
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Posted: Fri Jul 1st, 2005 13:52 |
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Here is more information related to the anemia of chronic disease.
The Tumor Necrosis Factor-alpha (a pro-inflammatory cytokine produced by macrophages and other cells in the immune system) regulates iron transport in digestion.
Tumour necrosis factor alpha regulates iron transport
and transporter expression in human intestinal
epithelial cells.
FEBS Lett. 2004 Aug 27;573(1-3):195-201.
PMID: 15327997 [PubMed - indexed for MEDLINE]
Cytokine-mediated regulation of iron transport in human monocytic cells.
Blood. 2003 May 15;101(10):4148-54. Epub 2003 Jan 9.
PMID: 12522003 [PubMed - indexed for MEDLINE]
FULL TEXT here.
Calcium oxalate and iron accumulation in sarcoidosis.
Sarcoidosis Vasc Diffuse Lung Dis. 2000 Jun;17(2):140-50.
PMID: 10957762 [PubMed - indexed for MEDLINE]
Belinda
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Belinda
Research Team
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Posted: Sat Jul 2nd, 2005 04:19 |
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We have a new FAQ:
My doctor says I am anemic. What should I do?
Belinda
Later Addition: There is a reply from Meg re extreme symptoms HERE
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Grant
Member in Phase 3
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Posted: Thu Sep 8th, 2005 12:58 |
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For what it's worth regarding Anemia of Chronic Disease and how bad can it be allowed to go without treatment...?
The Merck Manual (Home edition) addresses that question in it's article on the topics of chronic disease anemia. I won't bother quoting them here, but just to let you know that Merck does have some information on this topic.
Basically it says to treat the underlying disease.
____________________
Sarcoidosis/lungs RBBB MP 01/04 Ph2 04/06; Ph 3 10/06 125D70 25D25 (Oct 06) break 01-03/08, NoIRs
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barbski
Member in Phase 2
| Joined: | Tue Jul 20th, 2004 |
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Posted: Thu Sep 8th, 2005 15:54 |
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I'd be interested to know what the blood test result criteria is for a dx of anaemia of chronic disease. I have been borderline anaemic on and off for the duration of my illness, but recently it has been more persistent.
My GP and CFS specialist (NB. NOT my MP doc/LLMD) are very keen for me to supplement with both iron and folic acid. I have so far resisted but if my tests continue as they are and more pressure is exerted, I fear I may cave in and take the supps at least till they get off my back about it.
The tests that come up flagged as low for me are: serum ferritin, serum folate, mean corpuscular haemoglobin and mean corpuscular volume. If that's consistent with ACD, I might have another go at persuading my GP that it's best not to supplement.
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05) NoIRs limited outings covered
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 8th, 2005 16:14 |
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Have any of your Doctors given you proof that those changes are NOT related to your chronic disease? After all, they are the ones who want to supplement. Shouldn't the responsibility for proof be on them, and not us?
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barbski
Member in Phase 2
| Joined: | Tue Jul 20th, 2004 |
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Posted: Thu Sep 8th, 2005 16:25 |
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Yes, absolutely, the burden of proof should be on the docs to prove it isn't. Unfortunately they've got the upper hand on me most of the time, they way the system works
I wasn't asking for proof, sorry if it came across that way. Just wondering if there was a common test profile for ACD that I happened to fit into. No probs if there isn't. I'll just have to get well and have the argument with my doc when I'm strong enough to do so.
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05) NoIRs limited outings covered
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arhayw
Member in Phase 3
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Posted: Thu Sep 8th, 2005 16:39 |
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Hi Barb,
I don't remember the specific indicators of anemia of chronic disease vs. iron-deficiency anemia (despite hearing it several times - major brain lapse problems!), but I do recall asking my GP more than once if ACD was a factor and she said decidedly no.
It wasn't until I relented to getting IV iron supplementation, which must be overseen by a hematologist, that the ACD was properly identified by said hematologist and supplementation was summarily vetoed.
So yes, there is a profile to look for but it may require a trip to a specialist to get the correct analysis.
The severe (or rather, drastically heightened) weakness and fatigue that I was having at the time has abated somewhat without "anemia treatment" so I can testify to the proof of the moderator's counsel as seen above.
Also, check out the info re: the transferrin receptor test which is supposed to be a more cut and dry approach for diagnosing ACD. (This test doesn't seem to be readily available in the US, but may be in the UK.)
All the best,
Renee
footnote: I have since been back to my GP and was entertained by the backpeddling she did...ah well, we are all subject to error. 
____________________
CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D30(Nov07)25D24(Mar08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 8th, 2005 16:39 |
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Barb,
The Docs tried to supplement me when I first showed signs of anemia back 30 years ago. Folic Acid didn't affect the serum folate very much, and made me feel ill, and Iron didn't change anything either (and made me even more ill).
The science behind ferritin being accreted in the inflammation is solid and well known, and that shouldn't be a problem for you to explain to Doc.
http://tinyurl.com/c8fcn
The best way I know of explaining why you should not take Folic Acid is to realize that it is metabolised to DiHydro Folate Reductase (DHFR) in the body. There are millions of people in America taking Methotrexate (MTX) for inflammatory diseases. MTX is a DHFR inhibitor. So, if you have an inflammatory disease, why in heaven's name would anybody want to give you Folic Acid?
..Trevor..
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barbski
Member in Phase 2
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Posted: Thu Sep 8th, 2005 16:43 |
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Dr Marshall,
Thanks for your reply. I've bookmarked both the article and this thread to re-read next time I feel like weakening and taking the supps.
Renee,
Thanks also for your post - it's given me a really good idea - if I ask for a haematology referral, it'll take so long to get the appt, that I'll have a stalling mechanism at least.
BW,
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05) NoIRs limited outings covered
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