Positive Ttt, Nmh, Low Ferritin, And No -- Can Someone Help Pls!!

[Hoosierfan]

All,

After dealing w/ lots of fainting spells over the years, and after becoming largely nonfunctional the last two years, I FINALLY had a TTT yesterday - -and I failed, spectacularly -- 7 min in and I passed out w/ low bp and a low HR -- so diagnosis of NMH / NCS.

On a separate note, we moved about 6 mos ago and I started seeing a new functional medicine doc who ran some labs about 2 mos ago and noted that my ferritin was "a little" low at 11 (I know better now!), so we started to supplement w/ iron and it has creeped up, only to 13.5.

After yesterday's test, I started to wonder, could the two be connected, so I did a quick search here and on google and found studies suggesting that my fatigue, jitters, dizziness, constant lightheaded feeling and NCS could be low ferritin -- imagine my shock!!! My ferritin was 24 two years ago and no one said anything! But these studies:

http://www.ncbi.nlm.nih.gov/pubmed/18571533

http://www.ncbi.nlm.nih.gov/pubmed/23275108

Seem to suggest that anything lower than the 30s or 40s can be a cause of NCS. And I have read for a menstruating woman that IDEALLY you want ferritin in the 70s!! OMG. My understanding is that low ferritin means that the body does not break down nitric oxide = vasodialation = low bp and NCS.

My question is, am I understanding this right? All the science and the mechanisms? I ask because my doctor is reluctant to put me on iron infusions or injections, seemingly ok w the idea of letting my ferritin creep up. But at this rate I would not see a reduction in my symptoms for 2 more years! Ack!

And has anyone seen improvement in their symptoms w/ iron supplementation? How much and how were you taking it?

Thanks for reading all, I just need some ammo to take into my doc to say "hey, enough is enough. I need the injections to get me functional."

HF

[Chaos]

This is really interesting. I also have low ferratin (although no docs will say that since the lab calls them "normal" at 12).

How are your B12 and MCV levels?

I read recently that "iron can drive bacterial virulence" so maybe that's why your doc doesn't want to force a faster supplementation?

The whole NO thing is really fascinating. I wonder if the low ferratin is actually just a symptom and not the cause. I think there may be other things that are the problem and the low ferratin is just another indicator of the fact that we're not dealing with NO well. How is your LDL?

Have you looked into methylation/MTHFR at all?

[Chaos]

Another source you might look at is Martin Pall's NO/ONOO theory on Oxidative Stress. His research is mostly around CFS and fibromyalgia but the overlaps with our stuff is pretty significant.

[Hoosierfan]

Hey chaos. My b12 levels are good. Mcv is at 93 percent but my rbc and hemoglobin are on the very low end of normal. My mthfr is fine altho I do have a COMT defect. The more I read on iron, the more I think it is it for me. It is the one test where my labs have gotten worse the last two years. And these studies suggest it is a major mechanism for NCS.

[Sanvitese]

My ferritin is always low , so my endocrinologist tested me for celiac transaglutammine antibodies and they were scary high.. My GI doctor however said that since biopsy was negative , I am not celiac, not sure I am going to rheumatologist tomorrow ..

[Relax86]

I had low ferritin, low hemoglobin. I don't remember the numbers. I take a 28mg iron every morning and used to also take a 15mg pill at night. I had severe menstrual cycles until endometrial ablation in July of 2013. After this surgery I really started seeing more consistency in my good days, even some 100% me days. I read a ton about hypovolemic POTS on the forum and seemed to feel that was my type of POTS (?). I have not had my blood work retaken in a pretty long time. So unsure where my numbers are. I dropped the second iron pill on a gut after the procedure and I am doing ok.

[sue1234]

Julian Stewart has done work in the past that states low iron is a finding from his studies on teens with NMH. I tried to find the thread where I had posted this a year or two ago, but couldn't find it. I went to his website, but couldn't find the original site I had read up on this before.

I had low ferritin around 2001, but at the time I did not have POTS yet, just tired but busy. I have always wondered about anemia, as some POTS symptoms are the same, but my numbers all look "normal". I wonder if there is something more detailed, like, where the iron isn't being used properly or something?

Funny thing, Chaos. I had an appt. with a doctor last week where he mentioned that possibly some people's low vitamin D is a compensatory mechanism from the body due to some kind of inflammation. He didn't get any more specific than that, but I wish he had.

[sue1234]

Sanvitese, I would consider eating gluten-free anyway. My Ttg numbers were normal, but my anti-gliadin antibodies were high and I had a normal gut biopsy. I went gluten free and it really helped my stomach issues.

[AllAboutPeace]

Interesting info - I didn't realize the connection with NO.

I was diagnosed with iron deficiency anemia six weeks ago and have been supplementing 300mg/day since then. I was hoping for a little energy boost, but don't feel any difference at this point. I just had blood work today, so I'll be curious to see if the levels have come up at all.

[sue1234]

I found the article by Stewart explaining ferritin/iron and pooling. I know I've taken some iron in the past and swear it makes me less POTSy, even though I am not technically anemic. (I don't take much, and not for very long).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2475592/?tool=pubmed

[Hoosierfan]

Sue, yes that is the article I was thinking of. I will forward this one to my doc as well. Just an integrative doctor for now, but I am in the works to see Chelimsky in Milwaukee in a couple of months. I am hoping he can make the connection to my low iron, and if that is it (and I haven't started them yet), get me started on injections. Unfortunately the supplements just are not raising my ferritin very much, probably a malabsorption issue.

[Hoosierfan]

Now I just need the study that says, "hey, we treated those 200+ kids with NCS with iron injections and their symptoms improved!" Does anyone know if this is being looked at?

[sue1234]

Hoosier, what did you think of the functional medicine doctor? What all did they test? I've been wanting to see one for 2 years, but just never saved up the money to do it.

[Hoosierfan]

I am now on my third functional medicine doc!!! They have all been really good, trying to put the pieces together, but none has gotten it yet. They do look at the whole body -- hormones, vitamins / minerals, detoxification pathways, nutrition, etc. so that is a much better approach than a normal doc. But also don't forget that they are still generalists, so I find myself still researching and bringing stuff to them, as opposed to the other way around. Case in point my first functional medicine doc was a pediatric hematologist -- and even HE didn't catch the ferritin thing. He just wasn't aware of the connection with syncope / dizziness at "normal" levels of ferritin.

I am now going to consult a functional doc who specializes in thyroid, b/c my thyroid may be going bad. So, I think they are good for an overall assessment of health, and helping you in quirky areas that a normal family physician might not get, but in the end if you have a particular disease (POTS, thyroid, a certain cancer, etc) they are not going to be helpful with that -- I think the specialists are better there.

[sue1234]

Thanks for the info. I was wanting to see one about my bad digestive issues(got better going GF, but occasionally gets bad again). I was wanting them to do the stool test to see what bacteria I had and help get them "balanced".