Im really hoping someone can give me some advice....
About a year ago I started to experience extreme fatigue/ weakness at the same time I got my period. Having had a full range of blood tests done my iron was low scoring 11 (on a 20-300 range). I was just advised to take suppliments (for years I always took suppliments for 7days prior to starting my period). Ive also bee told that I am not anaemic
Ive been taking the suppliments for over a year now (one 305mg tab every second day as it's all my stomach can manage). I got my bloods done again in August and it scored 25 (on a 20-300 range). Yesterday I got my period and spent the whole of yesterday and today in bed, absolutely and totally wrecked :-(
I went to a nearby doc (as a last resort as my old doc has retired); he suggested a chest xray and told me there was no real reason to check my iron count again?!?! He also said that my complaints about iron being hard on my stomach means that it obvious isnt working for me so there is no point in taking the suppliments anymore.... I'm totally shocked by his remarks...
I eat very well with the exception of beef/ lamb which I just cannot stomach.
Can anyone advise me on what step(s) I should take next? Ive had my confidence in doctors totally knocked today

Welcome to NeuroTalk, Ironless Maiden! Sorry you are feeling lousy.

There are some knowledgeable folks around here who will no doubt stop by to answer your questions. I hope you get some help so you can feel better.

some good experience to share.

First off, I'd get another doctor.
Any doctor who cannot properly treat iron deficiency needs
to be replaced.

I'd start there.

First off

I can certainly empathesize as I have been working on an iron deficiency problem for a year now and after all I have learned I realize I have been suffering from it for even more than a year.

So here is what I have learned over the past year.

My iron deficiency is due to blood loss from my periods and a malabsorption issue.

My periods are heavy and have gotten heavier the last few years because of perimenopause and hypothyroidism which tends to make periods heavier. Plus i have stopped taking birth control pills which contributes to the heavy periods.

Also iron is a very large molecule and as we age we absorb less and less nutrients from our food. Believe me when I say I love red meat but no matter how much I ate I was not absorbing enough. I also have absorption issues with B12 which is also a large molecule and vitamin D. I was a metabolic mess! It has taken more than 1/2 a year of really working hard on all three nutrients to get back to feeling better dare I say normal.

It was my gasto that identified the iron issue and we did a colonoscopy to make sure there was no gastro bleeding and there was not.

Beyond that most of my docs really did not give the iron things must creedence, even the gastro after a while.

So I educated myself on what the blood tests meant, how to read them and how they all worked together. I will get into that in a moment.

BUt I felt terrible and yet had several classic symptoms. And note not once was I ever shown to be anemic which is what I felt like all the docs waited for before treating with importance.

-Frontal Headache 9even worse the week of my period)
-Fatigue
-Racing heartbeat or palpitations
-Shortness of breathe
-Dizziness....for me more of a equilibrium issue and nausea upon motion
-and one that not one single doc connected to iron deficiency....a chronic cough! Yep cough - I could not shake this cough and it was not due to sinus or flue or a cold. But read the article below.

http://www.reuters.com/article/healt...ame=healthNews

Lets talk about the blood tests that you should insist upon.

You need to do the following in conjunction with each other

Iron, Total - The iron level test measures the amount of iron in the blood serum that is being carried by a protein (transferrin) in the blood plasma.


Iron Binding Capacity (Tibc)- TIBC test measures the amount of iron that the blood would carry if fully saturated. Transferrin is produced by the liver and the TIBC can be used to monitor liver function and nutrition. Generally speaking, if the iron stores in the body are low, fewer of these spots on the transferrin molecules will be filled by iron, and the TIBC will therefore be higher. Higher is not good. The lower the TIBC the better!


% saturation - not sure how they calculate this one, but its related to the TIBC and measures saturation - I know the higher the TIBC - the lower my saturation.

Ferritin - refers to your iron stores in tissues like the liver, spleen and bone marrow. Ferrtin will be low when there is an iron deficiency in the cells. to be considered anemic you must have a score lower than 10....although believe me at a score of 20-25 I felt like more than enough crap! Oh and get this my doc just told me they raised the low end of the ferritin scale recently because of iron deficiency. And interesting fact your ferritin need sot be 35 or above for hair growth. And sure enough the last two months when I went above my hair grew so fast!

The ferritin test is very important to look at inconjunction with the total iron and TIBC test. It was simply put to me that the ferritin shows your stores and the TIBC shows how well you use them. The higher the TIBC the worse you are.

RDW - this is a measure of red cell distribution width - or the size of your red blood cell. the RDW must be a proper size to carry oxygen when you tend towards the higher side you feel weaker because your cells cannot oxygenate themselves as well.

Please note that my RDW was never really out of range but over a year I have watched it and when it gets higher my iron is low and when it is more in the middle my iron is more optimal.

Another test that you can do but not many docs do it is Transferrin....The protein that transports iron around the body is called transferrin. The liver produces more transferrin in response to iron deficiency, so the percent transferrin saturation of transferring can be a good indicator of iron deficiency anemia. I have only had this test once and it was when my iron was at its best so I do not have much to go on there.

In iron deficiency anemia, the total serum iron is low, the transferrin is high (or high TIBC) and therefore the percent transferrin saturation is very low. My numbers followed this pattern...low total, low ferritin, high TIBC, low saturation.

Below are my results...The first number is when I first stumbled onto the iron deficiency (last Oct)and the last the test from one month ago (Sept 08).

Total Iron (oct '07) 55 (range 40-175) (I have been as low as in the 40's)
Total Iron (Sept '08) 87 (my highest on the supplements has been 114)

TIBC - (Oct '07) 416 considered high (range 250-450) my highest was 458 and boy did I feel like crap!
TIBC - (Sept 08) 312 (my best yet)

% saturation - (Oct '07) - 13 low (range 15-50) - my lowest has been 10%
% saturation - (Sept '08) 28% within normal range finally!!!

Ferritin - (Oct' 07) - 18 my lowest (range (10-232)
Ferritin - (Sept '08) - 47 - (note they have raised the range now to 20 -232and my my doc wants it up to the 50-60.)

RDW - (Oct' 07) - 14.2 (range 11.7-15) the closer to 15 the worse I felt)
RDW - (Sept '08) - 13.4 (range (11.7-15) see how it went down the better my iron got...more oxygen and less sort of breath!

It took me a year of talking to my endocrinologost to get her to walk this iron issue with me and she educated her self along the way.

So what did I do?

At first the docs were like just take iron supplements - they told me how much and I was like ok - and the only ones were over the counter.

They did not work that well and the gastro upset was significant.

Finally searching the internet one day I found a prescription iron that I asked my doc for.

Its a once a day pill - YAY no more several times a day and the gastro upset is so minimal compared to where I have been.,

Its called Repliva and it also has some other vitamins in it to help with iron absorption. I insisted upon a prescription and I was not taking no for an answer. And my doc had never heard of it and I brought in all the literatur off the internet.

It has changed things for the better but I have to stay on it consistently. Once I stopped for 2 months and wham right back down in the dumps with the return of the headaches and my chronic cough. And it took atleast 3 month of taking it before I even started to feel normal which is about right since my doc said it could take 6 months. And even right around my period that little cough comes back for a week because of the blood loss but nearly as bad as what it was before treating my iron deficiency anemia.

As long as I have my period I will be on repliva. I educated myself and every 3 months I have it checked along with other tests.

So I agree with Mrsd...find a doc that understands iron and if not educate them - I had too. Last month for my best test yet my doc told me that she is now prescribing my find - Repliva - to her other patients and its helping and she thanked me for being persistant with her on my test results and how I felt. And when I saw my results and was like yippee can I come off she said nope remember hat happened. She said I also think you malabsorb and lets contiue it and check it every 3 months.

So thats my iron deficiency story. P.S. stay on top of the b12 and vit d as well - for me they all seemed to go hand in hand.

Good luck

Where does Transferrin, Serum fit into all of this. From what the doc's assistant told me, the only test he did was transferrin, serum..in July it was 256, now it's 317. I thought he was going to do another ferritin level, but he didnt.

This is all very confusing!!!

Hey Edb,

I am not sure how transferrin works. I will have to do some reading. My doc does not use that as her guide she uses total iron, % saturation and iron binding capacity and ferritin. From waht little I know the tranferring might read like the iron binding capacity meaning when the number goes up you are not getting enough iron.

I will try to read up on it.

elevated transferrin may signal genetic hemochromatosis:
http://www.cpmc.org/advanced/liver/p...romatosis.html

Well, 317 is still well within the normal range. If my ferritin is only 26, and my iron is 61, then I can't imagine that I could possibly be overloaded, unless I just read the website incorrectly that MrsD posted.

My head is spinning over all of these numbers.

I do find it weird that my doc tells me my ferritin is low, then runs this test, not a new ferritin test. I have a checkup with my PCP tomorrow and I am asking for an RX for Repliva. We will see what happens next.

I've posted this information several times.

Hemochromatosis is a genetic disease (very common in Irish 1:3 carry the gene)
and ultimately fatal. Often not diagnosed until too late.

I have some posts about it recently on PN, if you search there.
One website states that you can have low iron (red blood cells) and still have it high in tissues --deposited there.

It causes all sorts of problems and for some reason is not screened for in people. (even though it is about the same % as identical twins occur.)

No drugs for it, right? Certain diseases are considered rare, especially if there is no drugs connected to the problem...like Celiac. Same is true for gluten intolerance...the doctors are getting better, yet now, if you don't have celiac, they let you slide through the cracks. A gluten intolerant person can be as sick, or sicker than a celiac.

Is there a test for this? Must be.