This Is MS Multiple Sclerosis Knowledge & Support Community

I'm sorry for you Jimmylegs. I haven't had much pain, so I can't really relate. The most I have in my stomach (besides when I couldn't feel it) is a burning itch. It is very uncomfortable, but it doesn't really hurt. It will be a great day when someone figures this all out- such good people here and so much suffering.
I go to the doc tomorrow to discuss the MS and my blood work. I have so much to talk to him about- the poor guy. I'm sure I exhaust him with all my questions and all the ideas that I pick up from here. I'm surprised he doesn't increase my fee!
Feel better, Jimmylegs.

Terry

Well, guess what, Jimmylegs? Doc says NO to iron supplements. He said that though my iron is low, I am not anemic. He upped the strength of my homeopathic remedy, and said do not take iron at the same time.
So, no iron experiment on my hair regrowth.
Also, last time I was there I told him of my cognative issues. He said he was unaware that MS causes cognative issues.
Today, he didn't treat me so well. I think he thinks I'm a nut case.
Sad day at the doc.

Terry

BIG EFF WORD! i just somehow lost my browser session when i had spent ages putting together a message for you. GRRRRRRRRRR

anyway, never heard of cognitive issues in ms, what planet is he from. did he miss the 1094 papers available through the pubmed database?

ok so to cut my previously long, well researched and cited message short (by the way, it's a frustrating topic because the researchers are having fun using as many different units as they can find for the serum ferritin concentration!!!) ... here goes.

some sources call the normal range 12-300. those are out of date.
this was questioned in the late 90s and a new lower end of 16 was proposed.
my lab says normal iron is from 41-300, possibly deficient is from 18-40, and probably deficient is <18.
the lab test for serum ferritin is a good indicator of body iron stores, but when the patient has an inflammatory condition, serum ferritin becomes elevated and therefore over-represents the body's actual stores.
in alopecia/iron studies, the control subjects with no hair loss had levels averaging 60.
people that overdo iron supplementing (professional road cyclists in the study i read) have ridiculous levels up over 300, sometimes over 500.

in my own case i was told to supplement with my 300mg ferrous sulfate pills for 3 to 4 months and then we would test again. my level at the time (36) was only in the 'possibly deficient' category, and the doc did not know then that i had an inflammatory condition, so she wasn't being extra cautious because of that (i would be diagnosed 3 weeks later).

so, might be worthwhile revisiting the iron issue with him some time. and take a stack of abstracts with you! let me know if you want me to track down all the references i just LOST GRRRRRRR lol

what exactly is the danger of combining iron supplements with your homeopathic remedy? did he say?

grrrr i'm so mad that he is not treating you nicely! it is so wrong when your health care professional is not on your side!!! hope things improve

JL

Ya well, my neuro didn't think that I should have pain from my MS. Indeed, what planet are they from? BTW, Cymbalta has greatly reduced my pain.

Anyway...I was told 3 years ago that my iron level was low by my PCP. I am considering having it checked again and taking supplements (if needed) but what does one that is already constipated from the MS do? Doesn't iron make you constipated?

JL,

I asked him "why no iron?" and he said something like "iron has an oxidating effect" and then cut his next sentence short. He started to say something else, but like I said, he wasn't in his best, discussion-friendly mood. He told me maybe later we can add iron, but for now, keep the keep the iron and remedy taking to "weeks apart". I didn't tell him that I'd already bought and taken some. At least I only bought 25mg- hopefully no harm there.
He looked at my blood tests and I mentioned the EBV and CPN results. I have antibodies to both. What he said was- "nothing to treat there, RIGHT?"
I also had asked him to test my zinc levels at the urging of someone here. He was looking at the results and noticed the Vit D results said "pending". (I thought he wasn't checking VitD b/c of the cost- he gave me some to take last week instead of testing but it was listed on the results.) He said he'd have to check with the lab to see why those hadn't come back, and I mentioned that Zinc said pending also. He said "I don't see Zinc on here anywhere" as he was scanning the pages. "Did I make that up?" I asked (always doubting this MS brain of mine) "Yes, Terry, I think you did" was his reply. I came home and checked my copy, and it says Zinc..... Pending!!!!!
He told me he went to the EPA to do check-ups as he always does on Wednesday mornings and there was a lady there with MS who gives herself a shot once a week. "Have you done this?" he asked? "No, and I don't want to" was my answer. End of conversation. Why did he ask me that when he has my neuro reports there showing diagnosis spring of 2006. By 3 months later, I was his patient in his office taking the homeopathic remedies?
There were more half conversations like these- bad bad day there.
Bottom line- this is the treatment course I have decided on for now. So, no iron, no more questions, I'll keep my cognative issues to myself, and hope for the best.
I'd sure like to be able to discuss what I read and wonder about. I'd sure like to share with him the brain fog, etc, how bad it was and the obvious improvement there. I don't doubt that he is on my side. I'm sure he wants me to be better.
I think the big F word applies here, too.
Terry

Terry
Can you find a new doctor? One that won't be dismissive of you? You have every right to discuss your symptoms and course of treatment with your doctor and he should be receptive to the conversation. If not, find someone who is. I'm not saying that a doctor needs to agree with everything you want-there may be good reasons why you shouldn't be on a particular therapy. But a doctor owes it to you to discuss things with you and make a plan that you both agree on. You have, in essence, "hired" him to work with you and it appears he is not. You wouldn't put up with this if you hired a plumber, electrician or painter to work on your home, would you?

Your health is everything and you need help, which you are not currently receiving. Find someone else who will work with you. It's too important!



Lori

Lori,

I do totally agree. But like I said, this is the treatment option I have chosen, and my relationship with him was very good for a year and a half, so I will wait patiently. Hopefully he will get over whatever the problem was.
But Lori, you are correct, and I will find another doctor if it continues.
It was awful and I needed to vent. Thanks for understanding!

Terry

hope things improve for you terry! hopefully he'll agree to some iron intake in the future. i've learned to my own permanent cost what ignoring deficiencies can do!

missv, you could try taking some magnesium for a while to help with constipation. say, take 100mg at a time and just keep adding more to see if you get some relief. in my case 400mg/day did the trick. unless you're really low in magnesium that might do it for you too. once you get it squared away, maybe then you can take iron for a while. don't take the iron and magnesium at the same time. i imagine it's okay to take them at different times in the same day, but i'm not 100% sure. so you could maybe try every other day or something? i would have to look into timing more carefully to say anything more concrete about it.

if anyone's interested in getting more iron without an outright supplement, you can use cast iron cookware for when you make tomatoey or otherwise acidic dishes. you can eat oysters and meat (esp. chicken liver, also beef liver) and eggs, and when you don't eat those, maybe try fortified cereal. spinach and kidney beans are both good non-heme iron sources, but they also have acids that can interfere with absorption. you can take vitamin C to help compensate. also you can make sure your spinach is cooked - this gets rid of the acid that interferes with the iron's absorption. enjoy caffeinated foods and beverages away from your iron-rich foods. overall, might not make as big a difference as a supplement, but it probably wouldn't bung you up as badly either, and as a more subtle approach, could have benefits without interfering unduly with a more formal treatment regimen.

ps: although the main thread was about iron i am back here because zinc was also mentioned - after recent testing my zinc result came back: deficient. so, am working on that now too.

Okay, JL, I'm going to start to go through this iron issue again. My dad is in the hospital, so I won't have lots of time for this, but I thought I'd start putting what I find here, and you can help me as I go.

[edit] Bacterial protection
A proper iron metabolism protects against bacterial infection. If bacteria are to survive, then they must get iron from the environment. Disease-causing bacteria do this in many ways, including releasing iron-binding molecules called siderophores and then reabsorbing them to recover iron, or scavenging iron from hemoglobin and transferrin. The harder they have to work to get iron, the greater a metabolic price they must pay. That means that iron-deprived bacteria reproduce more slowly. So our control of iron levels appears to be an important defense against bacterial infection. People with increased amounts of iron, like people with hemochromatosis, are more susceptible to bacterial infection. [3]

Although this mechanism is an elegant response to short-term bacterial infection, it can cause problems when inflammation goes on for longer. Since the liver produces hepcidin in response to inflammatory cytokines, hepcidin levels can increase as the result of non-bacterial sources of inflammation, like viral infection, cancer, auto-immune diseases or other chronic diseases. When this occurs, the sequestration of iron appears to be the major cause of the syndrome of anemia of chronic disease, in which not enough iron is available to produce an adequate number of hemoglobin-containing red blood cells. [4]

Our bodies' rates of iron absorption appear to respond to a variety of interdependent factors, including total iron stores, the extent to which the bone marrow is producing new red blood cells, the concentration of hemoglobin in the blood, and the oxygen content of the blood. We also absorb less iron during times of inflammation. Recent discoveries demonstrate that hepcidin regulation of ferroportin (see below) is responsible for the syndrome of anemia of chronic disease.

great stuff terry. i hope your dad is as okay as possible! i have to scoot off to work but i would love to go through this with you and see all the angles.

There has been quite a bit of research published which shows that excess iron in the human body is responsible for increased heart disease risk. Several years ago some Japanese researchers showed that excess iron in the body turns into rust and becomes problematic.

If one googles iron, rust, human body and Japanese, there will be a lot of articles pop up about the topic. Neither my husband nor myself take any iron with our supplements.

gwa

i'm already sure that excess iron is as much a problem as deficiency.

from where i sit right now, deficiency is more common than overload.

i'm curious to discover whether taking iron to correct a deficiency state can simultaneously equate to overload heart disease and oxidation (rust).

you can get heart disease and die from overeating, doesn't mean you should starve yourself to death.

you can drink enough water that it kills you too, never mind drowning - doesn't mean you should never drink water.