Low Ferritin w/ elevated iron levels

Thank you for your insight.

Hemoglobin was in the normal range. 14.0, so no anemia.

Looks as though the serum iron levels were not checked. That is transferrin on labs, correct?

Vitamin B12 and Vitamin D are in normal range (struggled with low levels in years past).

Given what I have provided, would you still take oral iron supplements (to raise ferritin)?

Is a genetic blood test worth looking into for hemochromatosis or is that not even worth it given my other numbers.

Thanks again. Feeling lost about next steps....

Serum iron is serum iron or just 'iron' which is different to ferritin. A level of 31 ferritin is not low. It is within the reference range. I have been maintaining my ferritin in the low 20s, sometimes less, with 3 monthly vx in order to get my TS% down which should be less than 45.

If your Hb is 14 then you are not low in iron. The unknown iron level (check your Complete Blood Levels as it should be in that load of tests) is good enough to give you a good Hb.

Your dr needs to educate himself on haemochromatosis because given what you have written, he does not have a clue. Or you might have to educate him - start with info from your country's haemochromatosis organisation, and go to Irondisorders dot com website, then Forms, then the first one on the list and print it off and give him a copy.

No, I would not take iron supplements to raise ferritin, nor iron given what info you have provided.

A haemochromatosis genetic test would not go astray - it is worth knowing, if your dr will order i, because your high TS% is a marker. On your Complete Blood Test, you will find a MCV test and if it is over 94%, this is also a marker. Both regardless of your ferritin.

Either way, it would be pertinent to have a six monthly iron studies test to monitor your levels and you might start loading iron.

If you have more questions, don't hesitate to ask.

My response is in limbo till weekend is over, but short answer is no to iron supplements.

Thank you for your time and honest opinion!!

All that can be found was the

Iron: 231 (range 40-190) mcg/dL

MCV: 91.5%

In June, my TS% was 44% and Ferritin was 52.

Iron: 159

Prior to that from Dec. 2018, ferritin was 75.

I am most curious to why ferritin lowered, but TS% went up to 61% and iron went to 231.

As you stated, it would not hurt to explore further genetic testing.

Most worrisome is your iron levels - 231 and 159, unless it is 23.1 and 15.9 in 'my language'.If it was that high, that would be dangerous. I hope it is just a difference in the way iron is reported where you come from.

Ferritin and TS% do not always work in tandem. For some it does, but I had to have vx for 21 years to get mine down to within normal range even though my ferritin range had become within normal. Everyone is different.

Re dropped ferritin, have you stopped eating red meat? It is not recommended but iron supplemented food and mineral supplements containing iron must be eliminated.

Infection, inflammation (even a cold) can increase ferritin which may have been the case for your earlier reading. But don't forget that a reading of 231 is not high unless you are a menstruating female and nature took its course for the lower reading.

But definitely try to get a genetic test (everyone with European DNA should be screened), so that you can be prepared for when or if you start loading iron (monitor levels every 6-12 months).

Please let us know what the genetic test outcome is, i.e. what HFE genes it indicates. As there are different HFE genes which can make a huge difference in how you will fare.

Regards

Thanks again for writing all of this. Little storm cut me off of communication for a few days.

"But don't forget that a reading of 231 is not high unless you are a menstruating female and nature took its course for the lower reading."

In response to the above, I am a menstruating female with very heavy flow these past few months. (still not sure why).

Six months prior these were my results:

Iron:159

TS% 44%

Ferritin: 52

vs. last week's results

Iron, Total: 231 (range 40-190 mcg/dL)

TS%: 61%

Ferritin: 31 (range 16-154 ng/ml)

*A full year prior, my ferritin was at 75 but no other iron levels were checked.

Just curious how to interpret some of this information. Iron Avidity would make the most sense but it doesn't answer the why for me. I do plan to do the genetic testing and will see what will come with those results.

Thanks!

I should also note I am 37 yrs old and eat like a caveman (woman)--lots of meat. Have since I was a little kid. 😃

I think you are jumping the gun worrying about iron avidity.You have not been diagnosed with Haemochromatosis yet, and your current levels would not be considered to be worrisome.

Iron Avidity usually occurs when your serum iron is constantly high but your ferritin is low from venesections. It means you are sucking in the iron but it is not being transported to become ferritin, which is probably fine, as the high serum iron is covering your heavy menstruation.

While you are menstruating heavily, you are naturally being treated. Your symptoms can be caused by any number of other issues, so it would be best to insist your dr investigate these. Even if they are caused by haemochromatosis (your levels are not high enough to cause harm), they would have to be treated the same as not having haemochromatosis so you might as well chase up those treatments.

Just in case you don't think I know much about it, I was diagnosed 21 years ago with homozygous C282Y after 9 years of severe symptoms ignored by the dr, which came on immediately after having a hysterectomy (stopped menstruating - I too had heavy menstruation, plus endometriosis all through my abdomen.) This must have kept my ferritin under control, until I had the hysterectomy. As a result of my diagnosis, my son was tested and found to be compound heterozygous C282Y/H63D, which meant he got the H63D from his father who was diagnosed homozygous H63D. So we had the whole spectrum in our little family. I volunteer with the national organisation of my country, read a lot of medical research, attend conferences and speak to researchers. I also ran a support group for people in my city, and discussed all their stories.

Most of my symptoms never went away, and I too, thought I must have Iron Avidity but haemotologists do not refer to that, but my haemotologist, because of my constant high serum iron, said I attracted a lot of iron. The only answer is to keep having maintenance vx, not try to increase ferritin. So that is what I do to keep my serum iron under control which also keeps my ferritin low, and now finally, my TS%.

Levels do not remain stable, as they are also affected by bouts of inflammation and infection which increases ferritin as short or long a term as the infection is active.

Try googling "iron overload and iron avidity" to see what you get but only read medical research not blog stuff like this forum. But don't forget you are not iron overloading at this stage.

Even if you are diagnosed with having the haemochromatosis genes, your haemotologist or dr might not consider it appropriate to do vx with your levels and while you are menstruating. So it just won't be the solution to your other issues.

If your genetic tests are positive for 2 haemochromatosis genes, you are lucky to be diagnosed at such an early stage before your ferritin is high enough to cause damage. But it will mean you should be monitored periodically.

Good luck with it all and let us know how you go.

PS: Yes, I also follow the Paleo diet long before a name was put to it. I.e., protein (meat), green veges, no grains, no sugars and no starchy foods. I found that my stomach just did not like potatoes, starchy foods, grains (breads), etc. There is no need to eliminate red meat from diet because vx works better at reducing ferritin. Eliminating those sugars also prevents fatty liver.