How can something that's ruining my life not have a name???

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Postby jimmylegs » Thu May 12, 2011 5:14 am

about the low ferritin:

here's a link to some ferritin info i posted previously:

http://www.thisisms.com/ftopicp-125236.html#125236

in particular,
my lab's guide to ferritin levels (in ug/L)
<18 probably iron deficient
18-40 possibly deficient
41-100 probably not deficient
101-300 not iron deficient
>300 possible iron overload

(there's a lot more info if you click through, just sort of a personal ferritin timeline)

http://www.doctorslounge.com/hematology ... -6564.html
"As the body iron stores decrease so does the serum ferritin. A serum ferritin concentration below 12 ug/L is virtually diagnostic of absent iron stores."

if your 17 result is in ug/L, looks like you're scraping the bottom!

World Health Organization: Iron Deficiency Anaemia. Assessment, Prevention and Control: A Guide for Programme Managers. Geneva, World Health Org., WHO/NHD/01.3, 2001
http://www.who.int/nutrition/publicatio ... ontrol.pdf

"Functionally, the lack of mobilizable iron stores will eventually cause a
detectable change in classical laboratory tests, including measurement of
haemoglobin..."

"iron deficiency anaemia represents the extreme low end of the spectrum of iron status. The severity of anaemia is differentiated by the severity of the reduction in haemoglobin level."

Table 6. Haemoglobin and haematocrit levels below which anaemia is present in a population
Age or gender group: Haemoglobin (g/l)
Non-pregnant women (above 15 years of age): 120
Men (above 15 years of age): 130

(Conventional conversion factors: 100 g haemoglobin = 6.2 mmol haemoglobin = 0.30 l/l haematocrit).

i notice when your ferritin was so low your hemoglobin was down at 12.4 (i'm guessing the units must be g/dL).

the klenner protocol is way older than that WHO document, but it also suggests keeping hemoglobin above 13, for ms and myasthenia gravis patients.

looks like you did nudge your hemoglobin up to 13.5 which probably means your iron status got a little better.

i will have to have a dig in my paper files to see if i have numbers for hemoglobin, as i worked to bring my ferritin level up to 90 (aiming for at least 100) from a starting point of 27.

i'm guessing borderline iron deficiency anemia is your number one go-to action item for addressing fatigue.
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Postby ToniH » Thu May 12, 2011 8:07 am

jimmylegs wrote:about the low ferritin:

here's a link to some ferritin info i posted previously:

http://www.thisisms.com/ftopicp-125236.html#125236

in particular,
my lab's guide to ferritin levels (in ug/L)
<18 probably iron deficient
18-40 possibly deficient
41-100 probably not deficient
101-300 not iron deficient
>300 possible iron overload

(there's a lot more info if you click through, just sort of a personal ferritin timeline)

http://www.doctorslounge.com/hematology ... -6564.html
"As the body iron stores decrease so does the serum ferritin. A serum ferritin concentration below 12 ug/L is virtually diagnostic of absent iron stores."

if your 17 result is in ug/L, looks like you're scraping the bottom!

World Health Organization: Iron Deficiency Anaemia. Assessment, Prevention and Control: A Guide for Programme Managers. Geneva, World Health Org., WHO/NHD/01.3, 2001
http://www.who.int/nutrition/publicatio ... ontrol.pdf

"Functionally, the lack of mobilizable iron stores will eventually cause a
detectable change in classical laboratory tests, including measurement of
haemoglobin..."

"iron deficiency anaemia represents the extreme low end of the spectrum of iron status. The severity of anaemia is differentiated by the severity of the reduction in haemoglobin level."

Table 6. Haemoglobin and haematocrit levels below which anaemia is present in a population
Age or gender group: Haemoglobin (g/l)
Non-pregnant women (above 15 years of age): 120
Men (above 15 years of age): 130

(Conventional conversion factors: 100 g haemoglobin = 6.2 mmol haemoglobin = 0.30 l/l haematocrit).

i notice when your ferritin was so low your hemoglobin was down at 12.4 (i'm guessing the units must be g/dL).

the klenner protocol is way older than that WHO document, but it also suggests keeping hemoglobin above 13, for ms and myasthenia gravis patients.

looks like you did nudge your hemoglobin up to 13.5 which probably means your iron status got a little better.

i will have to have a dig in my paper files to see if i have numbers for hemoglobin, as i worked to bring my ferritin level up to 90 (aiming for at least 100) from a starting point of 27.

i'm guessing borderline iron deficiency anemia is your number one go-to action item for addressing fatigue.


I checked the ferritin, and it was 17 with a reference range of 10-154 ng/mL.

I actually take an Iron supplement, but it's not had much of an effect. I have read several articles about brain disease where Iron is deposited in parts of the brain... if this were the case for me, would my bloo work still show low Iron numbers, since the Iron is pretty much being deposited into one part of my body? I dunno how that all works. I did think the diagnosis of anemia specifically due to chronic blood loss was interesting... what's this chronic blood loss they speak of?

I don't know why I'm not absorbing it naturally... my husband hates seafood, so we mostly eat chicken or various red meats.
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Postby ToniH » Thu May 12, 2011 2:00 pm

LR1234 wrote:What are your general inflammation markers like? ESR CRP levels?
Also do you have high IgG levels or IGm (Compliments I think they are called)
Have you had Vit D tested?, Fibrinogen, lupus anticoagulants?

What level is your FT4 at? Mine was in "normal" 7-21 is the range in the UK (well where I had it done) and mine was at 8. I now take 50mcg thyroxine and its at 20 and I feel so much better. If you are in the low normal range maybe they can give you a low dose to see how you get on.

It took me 14 years to get diagnosed with MS. I was told it was M.E for many years as all my tests were normal.

Whatever you have (if the dr's find the name or not) its worth you taking care of yourself anyway i.e good diet. Maybe try cutting out gluten and dairy and eating lots of fresh real food (fruit/veg etc) ala Terry Wahls diet.
Drink lots of water throughout the day to keep the blood flowing.
Also maybe take some tumeric/proteolytic enzymes(nattokinase/bromelain/serrapeptase) and Vit C to help blood flow.

Please keep us posted...sounds like you have been through a lot I hope you get some answers soon x


I'm guessing we're using different reference units, but according to the records I picked up today my Thyroid Profile is as follow:

Free T3: 3.1 (2.3-4.2 pg/mL)
Free T4: 0.9 (0.7-1.7 ng/dL)
TSH (3rd generation): 1.179 (0.4-5.50 uIU/mL)

WSR (Westergren SED rate): 15 (0-20mm/hr)
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Postby jimmylegs » Thu May 12, 2011 2:17 pm

hey there, ng/mL is the same as ug/L. you multiply nano by 1000 to get micro (u) and you multiply mL by 1000 to get L.

so this scale applies to your 17 result:

my lab's guide to ferritin levels (in ug/L)
<18 probably iron deficient
18-40 possibly deficient
41-100 probably not deficient
101-300 not iron deficient
>300 possible iron overload

the 10-154 range is probably the lowest and highest result ever seen at your particular lab. i know that's how it is at my lab. once i had a lower result for zinc than the lowest previously seen. the next time i went for follow-up, my really low zinc level was the new bottom of the range. i would take your result as: <18 probably iron deficient

can you tell me about your iron supplement? what form, dosage, delivery of elemental iron per dose? how long have you been taking it consistently?

yes iron can be handled poorly in the body in chronic illness. ms patients have low zinc levels and suboptimal zinc can also result in iron dysregulation. i have quite a few posts about that in the CCSVI forum. try searching for posts by me with keywords zinc AND dysregulation. (fyi in case you didn't know, the all caps AND is important when using the TIMS search engine)

if you have refractory iron deficiency it can be due to chronic bleeding. question: ever been tested for h. pylori infection, by chance?

and could you elaborate on that skin pigment item at all?
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Postby ToniH » Thu May 12, 2011 2:42 pm

jimmylegs wrote:hey there, ng/mL is the same as ug/L. you multiply nano by 1000 to get micro (u) and you multiply mL by 1000 to get L.

so this scale applies to your 17 result:

my lab's guide to ferritin levels (in ug/L)
<18 probably iron deficient
18-40 possibly deficient
41-100 probably not deficient
101-300 not iron deficient
>300 possible iron overload

the 10-154 range is probably the lowest and highest result ever seen at your particular lab. i know that's how it is at my lab. once i had a lower result for zinc than the lowest previously seen. the next time i went for follow-up, my really low zinc level was the new bottom of the range. i would take your result as: <18 probably iron deficient

can you tell me about your iron supplement? what form, dosage, delivery of elemental iron per dose? how long have you been taking it consistently?

yes iron can be handled poorly in the body in chronic illness. ms patients have low zinc levels and suboptimal zinc can also result in iron dysregulation. i have quite a few posts about that in the CCSVI forum. try searching for posts by me with keywords zinc AND dysregulation. (fyi in case you didn't know, the all caps AND is important when using the TIMS search engine)

if you have refractory iron deficiency it can be due to chronic bleeding. question: ever been tested for h. pylori infection, by chance?

and could you elaborate on that skin pigment item at all?


Iron supplement is Reocyte Plus Capsule, no dosage listed on bottle, just a capsule a time. At the time of the blood work, I was taking my regular multi-vitamin One-a-Day VitaCraves. I've been taking this supplement since November, though I've missed several days here and there.

I have no idea if I've ever been tested for h. pylori infection... my guess would be, only if it's part of a regular general test i.e. a panel. Never heard of it.

The skin pigment thing was the rash... ah, the god-awful rash. It looked like Schamberg's, but wasn't. It started with a patch on my knee (that was present and "dormant" for months before suddenly actively spreading all over my lower body.) In fact, that first patch it still on my knee, though it's a lighter color. I still get the little pin prick spots in random places, and my doctor's best guy is that it's a type of petechiae. I know petechiae is associate with a certain type of anemia, maybe pernicous (sp?) anemia? It was certainly abnormal. My dermatologist had never seen anything like it. She sent off a biopsy from a plug out of my hip, and all the lab could say was that it looked, in appearance, like Schamberg's. They couldn't actually tell anything from the biopsy. And my regular doctor (who had a few patients with actual Schamberg's) said that what they had was nothing like mine and that it didn't "behave like Schamberg's" either.
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Postby ToniH » Thu May 12, 2011 2:45 pm

The good news is, according to my TSH test dated 11/3/2010, my B12 was up to 444. My folate was above normal. The TSH on that day was 0.84... as of 2/28/2011, it was up to 1.179... so, go me?
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Postby jimmylegs » Thu May 12, 2011 3:53 pm

reocyte plus as in this one that's recalled? :S eek!

http://www.totalrecallinfo.com/freerecalls.php?id=23998

at least it doesn't look like a huge deal.

well maybe the reason there's no info is that it is packaged as an rx only pharma product, rather than as a supplement.

when i buy iron i get it over the counter from the pharmacist. there is detailed info on the package. for example my current iron supplement is 'wellquest' ferrous gluconate, 300mg, delivering 37.5mg elemental iron per tablet.
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Postby bartman » Thu May 12, 2011 4:11 pm

Toni,
Just trying to help. A misdiagnosis like that which has happened to my cousin will ruin not just you but your entire family. All I am saying is MS treatments are the complete opposite of Lyme treatment and since they are so similar it's important to be right. I don't want you to live thru what I have. One final thing before I leave you alone, you should see the movie UnderOurSkin.com.

You are my friend, I only wish you well.
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Postby jimmylegs » Thu May 12, 2011 4:47 pm

hi again, i looked back over some of the CBC results. it mostly supports iron deficiency anemia:

MCH (mean corpuscular hemoglobin) LOW

MCHC (MCH concentration) LOW

RDW (red cell distribution width) HIGH
"...iron deficiency anemia initially presents with a varied size distribution of red blood cells, and as such shows an increased RDW."

MPV (mean platelet volume) LOW
"...old platelets are smaller. new platelets are larger ie higher mean volume."

but, this one was different: LY# HIGH

"An increased percentage of lymphocytes may be due to:
•Chronic bacterial infection (JL edit: which would include both lyme and h.pylori)
•Infectious hepatitis
•Infectious mononucleosis
•Lymphocytic leukemia
•Multiple myeloma
•Viral infection (such as infectious mononucleosis, mumps, measles)
•Recovery from a bacterial infection"

i thought i would find out if lymphocytes are high in h. pylori infection. it seems they are:

Blood leukocyte differential in Helicobacter pylori infection.
http://www.ncbi.nlm.nih.gov/pubmed/8689908
"The total number of blood leukocytes and the numbers of lymphocytes and basophils were significantly increased in H. pylori-positive patients (N = 58), as compared with H. pylori-negative ones (N = 38)."
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Postby jimmylegs » Thu May 12, 2011 4:53 pm

i noticed a little later on that the monocytes went high too. info:

http://www.nlm.nih.gov/medlineplus/ency ... 003657.htm

"An increased percentage of monocytes may be due to:
•Chronic inflammatory disease
•Parasitic infection
•Tuberculosis
•Viral infection (for example, infectious mononucleosis, mumps, measles)"

and then the granulocytes went up (GR, GR#):

"An elevated level of granulocytes is indicative of an underlying bacterial infection."

random non-scientifically referenced information:
http://www.helico.com/disease_weird.html
"Weird skin rashes have occasionally disappeared when H.pylori was treated."

might be something to look into. hth!
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Postby jimmylegs » Thu May 12, 2011 4:58 pm

re the b12, i have to look back and refresh my memory on what you said the units were. tomorrow!
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Postby lyndacarol » Thu May 12, 2011 6:04 pm

ToniH – Your glucose level of 93 still seems a little high to me; when you have been fasting for hours, what can be the source of your blood glucose? Cortisol. Non-dietary sources. Perhaps your body is insulin resistant and does not allow the insulin to sweep the glucose out of the bloodstream (your body's answer to this resistance is for the pancreas to pump out even more insulin). That is the reason I suggested a "fasting serum insulin test."

As you probably know, your blood pressure seems to be very good. The ideal to aim for these days is 115/75.

I asked about these various numbers because Metabolic Syndrome is defined by meeting several of the conditions in a spectrum. Metabolic Syndrome is also known as insulin resistance; it is also described as a hyperinsulinemia (excess insulin). It is also marked by extra weight – the body cannot put on fat without insulin.

It is good to have had your thyroid hormone levels checked. Some people with MS ascribe their symptoms to thyroid problems.

In my case, I believe the tingling that I feel in my legs and feet is caused by insulin, a very caustic substance, damaging the interior of my blood vessels.

Until THE answer is found, there is room for many hypotheses – excess insulin is only one of them.
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Postby ToniH » Thu May 12, 2011 6:13 pm

jimmylegs wrote:re the b12, i have to look back and refresh my memory on what you said the units were. tomorrow!


Man, thanks for all the info! I'd say that I wish I knew that much about stuff, but I'd forget it. Good thing there's google :)

Both my doctor and I sort of disregarded the numbers from that CBC on 10/19/2010 (with the high WBC, low LY) because I had only been off of a 10-day oral steroid pack for about two days. Before that I had been on antiobiotics.

But the h. pylori thing seems to at least be plausible for the numbers as they appear. Is it possible that this is something I've had my whole life? I think I mentioned before that I had a lot of viral gastroenteritis as a kid, and was hospitalized for it a few times. I got sick a lot in my pre-teens, always had strep or a viral infection. Then in my teens, I rarely got a cold. Then it popped back up, along with these other crazy symptoms.

It sounds like I either have one hug thing causing all of this, or several unfortunate issues going on at once that are all related and making it hard for me to get better. I don't know what to think.

So, my primary doctor will do whatever tests I ask him to, and if he can't do it he'll send me somewhere that can. Is there a certain test for this h. pylori? And do I need some sort of zinc test anyway?

Again, thanks a lot for all this info. I appreciate the time you take to look at all this stuff, especially since my high-paid doctors (and yes, I review all of my EOBS and I know that even with the write-offs they are making a killing) seem so unwilling to.
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Postby ToniH » Thu May 12, 2011 6:18 pm

bartman wrote:Toni,
Just trying to help. A misdiagnosis like that which has happened to my cousin will ruin not just you but your entire family. All I am saying is MS treatments are the complete opposite of Lyme treatment and since they are so similar it's important to be right. I don't want you to live thru what I have. One final thing before I leave you alone, you should see the movie UnderOurSkin.com.

You are my friend, I only wish you well.


I appreciate what you are saying. I really do. But I'm not rushing to any treatments until I know for sure what's wrong. I am aware that the treatments for many things that can seem like MS will actually complicate MS, and vice versa. To tell you the truth, I've considered myself sort of a homeopath. I worked in a chiropractic/acupuncture office, and I've been known to try charcoal, various barks and roots, slippery elm, dandelion, etc. I tried to fix whatever this is through the most natural means I could, but the neurological problems made me hand it over to modern medicine. I still get adjustments, but I've definitely laid off the weirder stuff for the time being. Although I guess I could try acupuncture for this tinnitus... what the hell? Can't hurt.
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Postby ToniH » Thu May 12, 2011 6:24 pm

lyndacarol wrote:ToniH – Your glucose level of 93 still seems a little high to me; when you have been fasting for hours, what can be the source of your blood glucose? Cortisol. Non-dietary sources. Perhaps your body is insulin resistant and does not allow the insulin to sweep the glucose out of the bloodstream (your body's answer to this resistance is for the pancreas to pump out even more insulin). That is the reason I suggested a "fasting serum insulin test."

As you probably know, your blood pressure seems to be very good. The ideal to aim for these days is 115/75.

I asked about these various numbers because Metabolic Syndrome is defined by meeting several of the conditions in a spectrum. Metabolic Syndrome is also known as insulin resistance; it is also described as a hyperinsulinemia (excess insulin). It is also marked by extra weight – the body cannot put on fat without insulin.

It is good to have had your thyroid hormone levels checked. Some people with MS ascribe their symptoms to thyroid problems.

In my case, I believe the tingling that I feel in my legs and feet is caused by insulin, a very caustic substance, damaging the interior of my blood vessels.

Until THE answer is found, there is room for many hypotheses – excess insulin is only one of them.


I seem to remember having to follow the nothing after midnight rule, it's hard to remember what I've fasted for after all these stinkin' tests. I can't remember if I had to be off my meds the day before or not... I know I did for one of them, and it almost killed me. I can do without the adderall, but having a body used to so much amphetamine means I can rarely sleep without something. Actually, that's why I find these itching spells so weird... I usually take benedryl (well, diphenhydramine, in Unisom) a couple of times a week lately.

I had my thyroid tested when they did my ANA. Most recently, my Free T3 was 3.1, Free T4 was 0.9, and TSH was 1.179 (that was from 2/28/2011). So my TSH got higher since my 11/03/2010 visit, when it was 0.84.

Is there a more complex thyroid test? My doctor is willing to do whatever tests I ask for.
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