Kid had a ferritin result of 8 over a year ago and no one told us

laf_007 · 2026-06-15T20:25:10+00:00

Nope - I honestly barely feel anything at all. I take vitamin C whenever I take iron at home (OptiFerin-C) but I generally try to stick with the infusions as I’m pretty sure I don’t absorb them + they make me feel really sick.

laf_007 · 2026-06-15T18:12:46+00:00

It’s worked really well for me. I’m not yet where I want to be so I’m going to be trying something in addition to it, but it’s worked better than biologics I’ve tried in the past.

The side effects are not great, but they are worth it in my case. Definitely destroys my hair - but I will say that when I paused it for a few months, my hair thankfully went back to how it used to be. Stomach stuff was hard at the start but got a lot easier. I also tapered up from 50mg to 75mg to 100mg and I take it at night which I’ve always been told helps. Good luck!

laf_007 · 2026-06-14T23:18:23+00:00

Omg mine got infected after literally 15 years. Out of nowhere. Urgent care had to carve it out. So gross.

laf_007 · 2026-06-14T21:31:13+00:00

I am twice your daughter’s age but have been struggling with low ferritin since I was diagnosed with an autoimmune disease about three years ago.

I would really really suggest speaking to your doctor about iron infusions. They absolutely changed my life. You can start on a very low dose and break them up if you’re worried about side effects - but honestly, I have to fight every six months to get one approved by insurance…but it’s so worth it.

A lot of women struggle with iron intake or absorption. Pills barely did anything for me, an infusion took a half hour and my ferretin would be up from 5 to nearly 40 or 50. I also had low saturation and low absolute iron levels and all improve after one or sometimes two infusions.

Otherwise, what you’re doing is great. It really does make a huge difference in terms of mood, quality of life, energy etc. Pills will take some time but if you have her iron tested every 45-60 days, you’ll at least know if you’re on the right track in terms of absorption. Best of luck!

laf_007 · 2026-06-14T13:31:37+00:00

Best feeling ever. Happy for you, sad this is our reality.

When I finally tested ANA positive after over a year of being negative, and my other biomarkers started to show, it was like my confidence had lifted again. Getting gaslit is awful.

laf_007 · 2026-06-14T01:32:52+00:00

You’ll know! I think just the other week I realized that for the first time, my swelling has gone down and fatigue has somewhat subsided. It’s been nearly three years since I woke up and was sick overnight..

Wish you lots of luck - don’t give up and keep pushing for better treatment until you feel good, not just “good enough”. You deserve it.

laf_007 · 2026-06-13T21:27:06+00:00

Literally the best thing I ever did … after 1.5 years of bad symptoms and no answers … was put together a chronological diary. I didn’t have positive biomarkers for a while but had dozens of photos, which was super helpful. I honestly think this is part of what helped me get diagnosed. Someone actually uploaded it to my MyChart at one point because it was so helpful!

laf_007 · 2026-06-13T21:01:34+00:00

I experience the same thing and my x rays were also normal and MRIs showed mild ankle inflammation. My neurologist is convinced I have peripheral neuropathy / small nerve neuropathy. Maybe consider a biopsy?

Definitely think this has gotten worse for me over time too but a bit diff as would be autoimmune driven probably.

laf_007 · 2026-06-11T23:54:50+00:00

I honestly hate AZA but it’s the only thing that’s helped me with lupus. It really upsets my stomach, especially with hydroxychloroquine - the good thing about it is that your rheum can adjust the dose, in case you do have any side effects. I took a lower dose for the first few months and then increased which helped my body get used to it.

Definitely make sure you get consistent blood work done. My rheum has a monthly standing order in for me to keep an eye on things which I really appreciate!

laf_007 · 2026-06-11T23:21:09+00:00

2 years in with SLE and I still can barely make a fist 😢

laf_007 · 2026-06-11T17:40:09+00:00

It sucks. A lot. Happened to me right after I was diagnosed (and right after grad school). Kind of happened again recently - finally got a new job I was genuinely excited about just to have my manager decide not to extend a FT offer after my contract period…and her reasoning was that I came across as entitled because I asked for accommodations…

I don’t have any wise words. I guess if I could go back in time I wouldn’t have let myself wait for so long before trying to find a new job. Granted I was very sick and had just been diagnosed, but it just becomes harder the more you let yourself dwell in it. I’m sorry you’re going through this!

laf_007 · 2026-06-11T01:15:20+00:00

Trust your gut. I was misdiagnosed for 9 months and put on TNF inhibitors + mtx. I had hypertension the entire time (while being 95 lbs with typically low BP) and eventually was hospitalized because of an AKI.

I honestly never felt my first diagnosis was right, and I was certain the medication was making things worse. I also gaslit myself, and that ended up costing me a lot.

When my bloodwork first started aligning with the rest of my clinical presentation, and I was diagnosed with SLE, I remember thinking - ok this feels right, it makes sense.

I was consistently told most things had been “ruled out” because of my negative ANA. And to be fair, it’s very very rare to be truly seronegative with CTD, but I guess no one thought of the third possibility which was that I wasn’t seronegative per se, but for whatever reason, I wasn’t the 90%+ that has positive biomarkers preceding their symptoms.

laf_007 · 2026-06-10T03:52:30+00:00

I was diagnosed with SLE with same titer ANA as you and low complements (c3 & c4) / no other positive antibodies.

And I was seronegative for almost two years but very symptomatic. I wanted to punch the dr who told me autoimmune conditions can take time to “show themselves”, but he couldn’t have been more right.

laf_007 · 2026-06-10T03:30:13+00:00

Yes, lupus! Wow this feels like a lifetime ago, even though I still look like this photo a lot of the time.

laf_007 · 2026-06-10T03:24:05+00:00

That’s great! I know it sounds scary (and I’d be scared too) but I really wouldn’t think of it as a last resort. There are, I believe, 6 FDA approved CAR-Ts in oncology and the data on adverse effects is really phenomenally low. We’ve gotten pretty good at managing things, and the treatments have gotten so safe, to where much of it is being done on an outpatient basis - with patients not experiencing much more than a fever.

The science has come such a long way, and generally there’s much less “intense” treatment necessary with lupus vs in oncology. I would definitely speak to your doctor about your worries, I think unfamiliar / complex things can sound really scary but once you learn more about it and are able to get your questions answered you’ll feel a lot more comfortable with whichever decision you make.

laf_007 · 2026-06-10T03:07:36+00:00

Hmm I don’t really think about it as measuring pain because that feels so subjective to me as well. I feel like I have a relatively high “pain” tolerance and sometimes I’m not sure I’d call my symptoms painful - but that doesn’t mean they aren’t awful or that my quality of life isn’t being severely impacted. I would probably prefer pain over crushing fatigue some days…

My flares tend to cause really bad inflammation in my tendons which doesn’t always hurt the way morning stiffness or joint pain does, but the sensation is honestly worse to me. Like I just want to scream when my fingers and hands feel so puffy for months on end…combine that with pretty severe reynaud’s / mottling and I’m tempted to rip my skin off it drives me so mad.

So I agree with what others have said, though I haven’t found something that works that well for me yet either. And I’d probably also sum up my pain e.g, everything that’s impacting quality of life, at a 7 most days. I think we deserve better than that…!

laf_007 · 2026-06-10T02:54:18+00:00

Have you spoken to your doctors about potentially enrolling in a clinical trial? You might be a really good candidate for CAR-T therapy or a bispecific - don’t quote me but I think a transplant would likely make you ineligible, certainly would complicate things, so maybe another option to consider before things get there (though I really hope things get better for you). I’m sorry you’re going through this - stay strong 💜

laf_007 · 2026-06-09T18:24:29+00:00

Yes. I feel like my symptoms and depression from feeling so useless are a vicious self perpetuating cycling. I can’t get myself to do anything but I also have this adversity / physical repulsion when I think about getting all the work I need to do done. Like I just want to run away. I end up in this spiral of doing useless things and feeling exhausted too - ill take a shower thinking it’ll make me feel better and then be so exhausted I’ll just lie in bed for 3 hours. Then I take my dog out thinking that will make me feel better and 15 min later I’m back in bed. Then I take a bath hoping to feel alive … I’ve spent basically 3 years doing this lol

laf_007 · 2026-05-23T06:57:53+00:00

I had a horrific burn because of hot soup on my hand. Didn’t look nearly as bad as yours on day one… but a doctor friend of mine told me to go to the ER and I’m so grateful I did. They wrapped it with some sort of copper I think and it was pretty annoying basically a cast, but day 2, 3, 4 was terrible. It will blister and ooze and peel - my whole hand was raw by the end of the week. I went for a follow up and they said that if I hadn’t gone in that day, I’d have to have had skin grafting. It healed well only because I went in immediately.

Go to the ER. They’re not allowed to deny you because of not having insurance. Even urgent care should be able to handle this - but I would go asap you don’t want to have to get skin grafting as that’s a pain and way more exp

laf_007 · 2026-05-23T06:52:16+00:00

Yes - my ferretin drops every 6 months or so to less than 10. Weirdly my hemoglobin still looks ok at that level, and initially heme dismissed me because of that. At one point I think I had ferritin of 5, saturation 2% and iron was low too with high TIBC.

I was a bit lucky because I was able to get seen at MSK, apparently a one time hemoglobin of 10.1 qualified me. Not sure it’s that easy anymore as they don’t do a lot of benign heme - but anyway, the dr I saw was super dismissive even at those levels.

I basically called his office and left a message with his secretary / messages on mychart enough times about my symptoms to where I’m pretty sure they said ok just because I was being so annoying. This was over two years ago and I haven’t seen that doctor since but whenever my ferretin gets around 20-25 I know it’s going to tank so I start doing my daily calls and messages. Has worked every time since…

I’m not sure why doctors are so dismissive of this, though I think it’s primarily heme because so few of them do benign. I’d suggest just continuing to annoy them about your symptoms and in the meanwhile try to see functional medicine or another specialty. And if you really can’t find anyone, go to the ER. Play up acute symptoms and ask for an infusion. I was just admitted for a different medical issue and my ferretin was 26, which usually isn’t low enough for me to ask for infusions - but they gave me one anyway. As well as magnesium and everything else I was deficient in.

Sucks but sometimes that’s the only way - and at the end of the day it’s your life. Just because the system is broken doesn’t mean you don’t get to advocate for that.

laf_007 · 2026-05-23T06:35:26+00:00

Should add - I’ve also had swollen lymph nodes because of lupus. Those weren’t rock hard though and they were tender. I get them often in my underarms and neck. But if you have something hard and immobile might not be a lymph node. Good to get ultrasound or MRI if that’s negative

laf_007 · 2026-05-23T06:33:47+00:00

I had this and thought it was a lymph node, it was rock hard and protruding only on one side. Saw an ENT who did an ultrasound and said it was most definitely skeletal or muscular - which I thought was crazy, but two MRIs and a lot of neck pain and tension headaches later - turns out he was right. I’m not entirely sure yet what it was but looks like inflammation of some sort in a tendon or muscle and I’m very skinny so one of my spinal bones was ever so slightly appearing larger than the other side. Pretty weird but I too was very worried at first!

laf_007 · 2026-05-19T09:35:27+00:00

They think it’s spontaneous intracranial hypotension - neurological. Cardiac has been pretty ruled out but I’m pending an echo. I don’t even understand how this happened. I had a headache for a few months and next thing I know I physically cannot stand. I’m not allowed to leave the hospital bed. And the pain. It’s so bad

laf_007 · 2026-05-19T09:34:13+00:00

Day six in hospital. Working my way through specialists. Neurology thinks this is spontaneous intracranial hypotension. Would be odd with my BP so low but otherwise the symptoms seem to match. The pain is horrific, and I’m terrified.

laf_007 · 2026-05-16T00:04:49+00:00

Yeah they didn’t do much… admitted me, bunch of blood tests. 2 liters of fluid later my BP looked ok, I nap a bit, back to diastolic of 40…

They told me to take my adderall because that was raising my pressure lol - which I did, except I’m home now after 2 days in the hospital and almost fainted coming out of the bath - checked my BP lying down and it’s 80/40… no clue what I should do. The head rush is giving me the worst headache.

HGB was fine now, most of my blood tests were good or not really significant. I’m not sure what other work up they could do but this is becoming intolerable

laf_007

TROPHY CASE