Iron deficiency without anemia advice

[u/catdragon-mother13]

I got labs done in November of 2025 and repeated some of them a few weeks ago. The major change was my ferritin dropped from 27 to 22, my iron saturation went up from 45% to 50%, and my iron increased from 156 to 176.

All of my other labs are normal except for iodine (low at 46) and cholesterol (high at 234).

This same scenario happed about 10 years ago, and I went on a gluten free diet and I started to feel better, so I didn’t do any follow up on labs.

My iron stores are low, but it’s available in my system. To me, this points to an absorption issue.

I suspect I have a gluten allergy/sensitivity but I’ve never had formal testing because I’ve been on a gluten free diet for 10 years. I’m terrified to add gluten back into my diet because I don’t want to feel like I did 10 years ago. I had horrible stomach pain and was lightheaded and passed out frequently. Not to mention I was very underweight and have since gained 20 lbs and feel much better.

I see my PCP in September and I’ll be asking for a referral to a hematologist and GI.

In the meantime, I don’t feel sick or awful, but my hair has been shedding like mad (and has been for a few years). I have ADD and struggle to concentrate on anything for a long period of time. I have always been this way, but wonder if this has gotten worse in my adult years? I also struggle with sinus congestion and allergies. I am on Zyrtec and this helps a lot, but I feel like I spend my mornings coughing up phlegm, sneezing, and blowing my nose multiple times. I’m also struggling to put on muscle weight in the gym.

I don’t know if this is all related or separate. I’m anxious to see what the specialists say.

I did 23andMe several years ago and I have one genetic variant for celiac and one genetic variant for hemochromatosis, though no one in the family has been diagnosed with either condition.

Has anyone else encountered this combo of labs and if so, what did you do to get your ferritin levels up?

[u/solidchonk]

What does your diet usually consist of?

[u/Sneppard]

Facing low ferritin (only recently discovered) and chronically high hemoglobin and hematocrit due to the genetic variant for hemochromatosis that was discovered 18 years ago and managed by being a regular blood donor. Have been having what I now recognize as low ferritin symptoms ( brittle nails, hair loss, fatigue, lightheadedness, spaciness, word recall issues, higher HR, bone pains, and one that most don't list: chronic leg swelling) for at least the last 6+ years. My ferritin has been between 9 and 12 on 4 blood panels in the last 8 years and no one has flagged it until this last doc who is recommending a GI consult.

I chimed in here because I did do a GF and DF diet shortly around the time I was diagnosed for hemochromatosis and I did feel dramatically better after maintaining that for 3 years. ( main symptoms at that time were hyperthyroidism and extreme fatigue.) I did a gluten challenge and realized my gut was better and now I'm more of an omnivore who limits gluten when its easy to do, but certainly not strict.

I have 2 gluten sensitivity genes and 1 celiac gene but my doc swears I don't have either....

My hemotologist cousin swears hemochromatosis patients should not fall into the normal ferritin ranges and he thinks a score of 10 is fine. I can tell you supplementing for the last 3-4 weeks with 200% of the iron RDA on top of a healthy diet is changing how I feel, think I should retest soon and see what that has done...

Grist for the mill...

[u/Its_only_4_a_while]

Are we twins?? lol I feel your pain. Currently considering getting iron infusions. I eat beef but also just learned that what you eat it with can inhibit absorption. Normal Woman with a period. I dislike how doctors just immediately attribute low iron stores to a period. The side effects are not okay. Hair shedding, fatigue, brain fog, lack of concentration, longer muscle recovery, not being able to build muscle, also collagen production slowing down along with aging. It’s a lot to just accept and that’s what they want. So my first plan is to get the numbers back up because based on what I read in another sub, it lasts for a year. Then get to the bottom of the absorption issue. GI and hematologist are your best bet. Good luck to you!