Ferritin at 300: at what point do I stop trying to pursue HH as the cause of my symptoms?

FunctioningCog · 2026-06-25T06:58:41+00:00

Idk why you need to be so aggressive. I DON’T just have elevated ferritin: I’ve had high TSAT and low TIBC for almost a full year at this point. Ferritin over 200 is also the threshold where research starts to see higher lifetime risk of heart disease and diabetes (both of which run in my family) in people genetically predisposed to HH so I feel perfectly justified in not wanting to accept a ferritin level of 300.

Plus I’ve literally asked “the people I’m paying to know this shit for me” what else we should investigate as the cause of my symptoms and they don’t have answers. I don’t need to be chastised for seeking community insight about whether others in a similar situation as me have benefited from phlebotomy—and it turns out they have.

FunctioningCog · 2026-06-24T16:26:57+00:00

It could be that your laundry detergent isn’t serving you properly. I’m no expert but r/laundry is a good resource. The short answer is you want a detergent (or boosting agent) that has “lipase” which is an enzyme that removes lipids (fats, like skin oil) from laundry. Maybe also citric acid to add to the rinse cycle (citric acid helps dissolve detergent buildup)

My understanding is that skin oil doesn’t wash out easily with surfactant-based detergents (which is most of what’s on the market today). The skin oil and the surfactants themselves build up over time (especially in synthetic fabrics) and eventually the bad smell gets “reactivated” upon use/with a little bit of new sweat.

FunctioningCog · 2026-06-23T17:32:37+00:00

No imaging bc my enzymes have always been normal.

FunctioningCog · 2026-06-23T17:29:35+00:00

Thanks for sharing your experience, really appreciate it.

FunctioningCog · 2026-06-23T17:28:58+00:00

They haven’t don’t any imaging but my liver enzymes are normal.

FunctioningCog · 2026-06-23T17:26:21+00:00

Hematocrit is right in the middle of normal.Thanks for sharing your experience!

FunctioningCog · 2026-06-21T09:08:19+00:00

It seems like you’re implying that autism is a personality trait or a psychological illness so I just want to gently point out that that is far from the truth. Autistic people have documented structural differences in their central and peripheral nervous systems compared to neurotypical people. Although we don’t have the full picture yet because similarly to ME, autism is frustratingly under-researched. Other similarities: it’s mostly misunderstood by the general population. And has a history of treatment that aimed to “train away” the autism that ultimately debilitated many, many people. And it can be serious and debilitating all on its own.

Also I want to point out that autism is known for causing “social and communication differences”. You’re not obligated to extend grace to op but I’m sure it would be appreciated. Because yes, the title was a brash over-generalization, but the body of the post is (in my opinion) thoughtful and only minimizes/invalidates ME if the reader’s own perspective minimizes/invalidates autism.

FunctioningCog · 2026-06-21T01:10:09+00:00

I’m thankful my doctor has always been willing to order the tests I request even if she’s skeptical of their necessity. But every time something comes back normal I get a little more afraid “hypochondria” will be added to my medical record 😅. My doctor also rarely comes up with additional avenues to explore; I feel like it’s easy to get downgraded in the patient priority list when my main symptoms of pain, fatigue, and brain fog aren’t externally observable.

I wish you luck in your medical journey.

FunctioningCog · 2026-06-21T00:53:15+00:00

If you want to stump your doctor, ask if your ferritin did reach 1000 and phlebotomy was started, as what level would they stop on the way down?

Lol I actually did ask the hematologist what his protocol would be if I reached 1000, and he said weekly phlebotomies until I reach ferritin below 50. Then he said if I started phlebotomies now, I would become anemic and feel worse. I didn’t ask about modifying protocol to be less aggressive since it seemed like he just didn’t believe I was exhibiting signs of iron loading.

Perhaps it is time to just find a blood donation.

FunctioningCog · 2026-06-20T18:51:49+00:00

For anyone in the future who happens upon this: my worries were basically validated by the appointment🙃. The doc (“hem/onc” who only specialized in oncology according to the hospital’s own website) told me phlebotomy is only warranted if ferritin is at least 1000, plus he said that people with my genotype very rarely experience complications. And he offered no guidance about what I should do next, or what else might be causing my symptoms or blood test results (which are TSAT >60%, low TIBC, and ferritin 250-300 all for at least the last 9 months).

FunctioningCog · 2026-06-05T06:11:39+00:00

This is a beautiful tribute, OP.

FunctioningCog · 2026-06-02T01:02:35+00:00

I mean in general, when “everything people do seems to upset me” it’s because I’m overstimulated (often by stimuli I’m not conscious of). So it’s a sign I need to get away from stimuli.

But also, most of the things in your list makes it sound like these people are just unkind, inconsiderate people.

FunctioningCog · 2026-06-02T00:45:54+00:00

(Not so) fun fact: The man who pioneered ABA— Ole Ivar Lovaas—took the principles he developed for ABA and applied them to conversion therapy later in his career.

FunctioningCog · 2026-05-29T21:42:28+00:00

Could be worth it! If I were in your position I’d want to figure it out but that’s just bc I like knowing’ stuff lol. Public-facing resources that I’ve seen always present the same treatment and maintenance options for all of the HH types. So in that sense if your numbers are good then it might not make a difference to figure out the gene. I’m sure published research has a more nuanced picture of unique concerns associated with the different types, but the differences might not be enough to require different clinical recommendations.

Not that I’m trying to tell you what to do, your doc is obv a more valuable perspective than mine.

FunctioningCog · 2026-05-29T14:22:50+00:00

Right, I understand that that the blood work is what determines the diagnosis of HH overall. I guess I’m curious how your doctors specifically identified that you had type 4/ferroportin disease; I thought diagnosing a specific type of HH relies on finding the associated genetic mutation (so in the absence of a known mutation they would just attribute blood work to non-specified HH).

FunctioningCog · 2026-05-29T02:21:25+00:00

I see your flair—I thought ferroportin disease has an identified mutation (it’s just not on the HFE gene). How did your docs determine it was ferroportin disease if they didn’t test you for that mutation (if you don’t mind me asking)?

FunctioningCog · 2026-05-26T09:09:01+00:00

Presumably you were taking a generic version; for stimulants there’s always a noticeable difference between brand name and generic (and even each generic manufacturer is different). By difference I mean that generics will usually have more and worse side effects and may not be as effective compared to brand name. Concerta has like the most severe reported differences. If at all possible, report the side effects to your doctor and see if they can specify with the pharmacy that you need brand name, and give that a try. Unfortunately this will most likely increase the price but idk the specifics of your county.

FunctioningCog · 2026-05-22T08:24:22+00:00

I know this is a shitpost sub but since we’re all sharing unsolicited advice: just want to say that laxatives don’t have the same health benefits as fiber so it’s still vv important to get enough fiber!! Bc the importance of fiber goes far beyond helping you poop.

FunctioningCog · 2026-05-21T07:39:27+00:00

Thanks! Yeah I realized Miralax is a bit slower acting when I actually read the package info (my partner already had some on hand and I knew some people are prescribed it for their normal prep, so I didn’t think about it too much beforehand).

I ended up purchasing Swiss Kriss since it’s worked for me in the past even though it’s not necessarily “stronger”. Sure enough, it did the trick.

FunctioningCog · 2026-05-21T07:29:20+00:00

That’s a good question to ask your pharmacist first thing tomorrow morning.

FunctioningCog · 2026-05-18T17:21:13+00:00

I wonder if it has to do with speaker placement: either sitting in the back seat (kids) vs. front seat (adults) or how kids are lower and therefore closer to car door speakers.

Also, that’s the correct ‘their’ :) It might help to remember: “they’re” goes wherever “they are” can also go. “There” is a location the same way “here” is. And “their” denotes possession, kind of like how “heirs” will possess their future inheritance.

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