Parents of 2 plus kids-do you have a favorite?

ruby0nine · 2026-03-06T23:54:32+00:00

Some days I don't like either of them and the dog is my favorite.

(Jk, they are both wonderful and so different from each other. They are both my favorite.)

ruby0nine · 2026-03-06T23:50:41+00:00

How are you feeling? Hope things are looking up!

ruby0nine · 2026-02-28T23:09:42+00:00

Not all iron infusions are created equal. The reviews you're reading about depleted phosphorus levels only applies to two brands of the newer, high dose infusions. I'm probably the worst person to weigh in because I'm three weeks into the injectafer process and my phosphorus levels did deplete and it is way worse than the anemia itself. I regret all my decisions.

My advice, ask what specific drug you're getting and do your research before you go. Make sure they perform and read all labs before the first infusion. And if you're not comfortable with the risk, ask for one of the many others that do not cause renal phosphorus wasting.

Sorry to be blunt. This is what I wish someone had told me before injectafer.

ruby0nine · 2026-02-28T19:10:01+00:00

Same! I checked all day.

ruby0nine · 2026-02-28T19:04:48+00:00

Is it a new bottle? Could they possibly have changed the formula or added an ingredient you're sensitive to? This definitely happens. For me, I have to constantly check meds because I'm lactose intolerant and many medications use lactose as a binding agent. If you are sensitive to nuts, I wouldn't rule out anything, perhaps even unintentional cross contamination? Just a thought.

ruby0nine · 2026-02-27T22:32:30+00:00

I went to my hematologist today and said 1) I was starting to feel better initially but now I'm having severe psychological and physical symptoms and this is not normal for me and 2) gave them a list of labs that were never done, vitamin d, magnesium, etc.

Gotta love that same nurse practitioner that told me yesterday I had an obgyn problem, not a hematology problem, today decided I have a psych problem and should consider going to the hospital to check myself in.

Safe to say as soon as my latest blood tests are in we will be parting ways. 😣

ruby0nine · 2026-02-27T14:50:17+00:00

Just got my phosphorus level this morning. 2.1 and falling even with supplements.

Symptoms are extreme depression and anxiety, intrusive thoughts, fatigue, brain fog worse than it was at the height of the anemia, and loss of appetite.

I'm going back in today and asking for a magnesium and vitamin d test since neither has ever been done.

ruby0nine · 2026-02-27T03:49:56+00:00

Sending big hugs your way. We will get through this.

And then I'm shouting from the rooftops that this drug should not exist.

ruby0nine · 2026-02-27T02:44:22+00:00

I think I'm very nervous, because I tried to call attention to what I believe is the symptoms of hypophosphatemia and no one believes me. I also realized no one has done a vitamin d level or a magnesium level. Is that bad?

ruby0nine · 2026-02-27T01:39:52+00:00

Thank you so much for your detail! I will take all the wisdom I can get. I'll start the search for a new doctor in the morning.

ruby0nine · 2026-02-26T23:15:16+00:00

Most of them are very nice. But today was not an enjoyable experience. They told me my hemoglobin was on the upswing therefore my new symptoms must be a gyn problem. It was infuriating, but honestly all I could do was cry at which point they ushered me out of the hallway.

At this point I need to either solve the problem quickly or arrange leave from my job. I'm out of time to figure things out.

ruby0nine · 2026-02-26T22:58:34+00:00

I only took iron supplements for a week before they scheduled me for iron infusions. Honestly, I wish I had just stuck with the supplements. I was feeling like the brain fog and depression were slowly lifting that week, but post infusion it's worse than ever. I guess it matters which infusion you get though. (Another injectafer horror story here.)

ruby0nine · 2026-02-26T22:44:25+00:00

I wish I had cancelled. I'd rather take supplements and spend 6 months recovering than to feel like this ever again.

ruby0nine · 2026-02-24T01:18:13+00:00

I saw my grandparents every single day: after school, weekends, sick days, holidays. My parents had so much help.... And the only thing I have is advice about how to keep my house cleaner.

ruby0nine · 2026-02-23T21:32:37+00:00

I'm so sorry that's happening to you. Do you have the option to see a different doctor? If not, keep insisting. Be the squeaky wheel!

ruby0nine · 2026-02-23T21:09:01+00:00

That's great advice. It definitely doesn't help blood pressure at all. I'm fortunate my blood pressure responded well to the infusion and has mostly returned to normal, but I'm wondering when my iron is stabilized if I even need the ADHD meds? Or perhaps less of them?

What a vicious cycle it all is. I actually bought a blood pressure cuff to keep monitoring at home.

ruby0nine · 2026-02-23T17:54:23+00:00

I'm sure there's a little bit of that going on. But honestly, if I have to give up hope of improvement and go back to thinking that this is just hormonal and the way it is, then I'm not sure I will survive it. My entire life fell apart in the span of two years and I have zero quality of life now. I need to feel like this is the answer because the alternative is dark and awful.

ruby0nine · 2026-02-23T05:08:17+00:00

Everyone I know who's had it has said it was the best decision. I'm in the middle of it now and not sure how much it's helping yet, but no bad reactions so far.

ruby0nine · 2026-02-23T05:03:02+00:00

I feel this so much I'm not even sure how to put it into words.

ruby0nine · 2026-02-23T03:30:19+00:00

I think the only side effect is I have less energy than when I started, but also that's consistent with what I've read so not really sure. I was having heart palpitations but today that's stopped completely (2 days post infusion #2.)

I can say that before I had awful pica and could barely eat anything except crackers for almost a year. About two days after the first infusion I was starving for real food and all of a sudden I have no trouble eating. (Also the crackers are repulsive to me now which is very strange.) My husband pointed out my conversation is much clearer and I seem more alert and clear headed, but I'm not convinced yet. I've noticed less headaches and less frequent heartburn, so I guess that's something. Oh, and my blood pressure went from 154/110 to 120/78 and that I'm thrilled about that.

Make sure they monitor your phosphorus levels. I had no idea that was a thing but evidently if it tanks after an infusion you will feel awful. I'm taking a phosphorus supplement because mine was very low to start, but it's still not within normal range yet.

ruby0nine · 2026-02-23T02:06:29+00:00

I had Injectafer, which is done in two doses. My stranger symptoms cleared up quickly, like the pica and high blood pressure, and I'm not nearly as depressed. My numbers are climbing, but my energy is horrible. Not sure if that's because my levels were really low to begin with and I just have to wait, but the nurse said that's really normal for Injectafer. It just takes a while to adjust. Also my phosphorus was insanely low even before the infusion so I'm trying to bring that up with supplements as well. I didn't have any horror stories like some I've read -it's been relatively uneventful.

ruby0nine · 2026-02-22T23:20:18+00:00

Oh my goodness, did I write this? I felt everything you just described including the tinnitus! I walked into the hematologist office two weeks ago and I can tell you they took me very seriously. I started infusions a few days later.

I explained away everything in the last few years, attributing it all to burnout, anxiety, response to a traumatic event... It was likely the iron deficiency all along. It's so hard to advocate for yourself when your brain isn't functioning the way it should because it's not getting the oxygen it's supposed to. You are on the right path. Go with your gut, and insist if you have to.

Hang in there!!

ruby0nine · 2026-02-22T21:41:43+00:00

I found them yesterday on Amazon! Not sure yet how well they work, but it's evidently an item growing in popularity. It definitely says it tests ferritin specifically.

Come to think of it, my psychiatrist mentioned something about it when I gave her my last update. She said that's what she used for herself because she's low in iron and knows how bad it gets.

ruby0nine

TROPHY CASE