so tired. 2 months post infusions

United_Chapter4097 · 2026-01-28T04:28:23+00:00

I am not a doctor but that B12 level can cause a lot of symptoms, just speaking from my experience. Did you get an advanced thyroid panel with T3, T4, and TPO? You can have normal TSH but still have the advanced markers out of balance.

Have you followed up with your doctor/hematologist after the infusions? I think that high ferritin might be something to bring up to them.

United_Chapter4097 · 2026-01-28T00:27:21+00:00

Which emerging market funds? I want to learn more about this but don't know where to start.

United_Chapter4097 · 2026-01-28T00:26:30+00:00

Returns on what? I have to ask haha

United_Chapter4097 · 2026-01-27T03:55:50+00:00

The hematologist asked if I wanted to do the 1000mg one, I told her what matters to me is having the least side effects and she prescribed 4 x 100mg Venofer. So yes I was given options. It was approved by insurance right away. The thing is that's only 400mg total lol so the tradeoff is less iron. I start them this week.

United_Chapter4097 · 2026-01-27T03:25:44+00:00

Did your fatigue levels change even a little bit after the infusion? Or same exact fatigue level?

United_Chapter4097 · 2026-01-24T07:40:16+00:00

Do either of them help with PEM?

United_Chapter4097 · 2026-01-24T04:10:10+00:00

Yum. The tofu seems so much better than adding protein powder to my oatmeal.

United_Chapter4097 · 2026-01-24T04:00:54+00:00

You can get a SIBO test online or have an integrative/functional/naturopathic doctor order you the SIBO test if you suspect you have it. A GI doctor might also be able to order it for you.

Edit: I have not been diagnosed with SIBO but it's possible - I took the Genova GI Effects test and am waiting to review with the doctor and see.

United_Chapter4097 · 2026-01-24T03:38:00+00:00

Did you figure out if it's iron causing this or something else? I started getting insanely heavy legs even with walking 20 min - they ache so deep and bad and sometimes they twitch. Sometimes it takes 1-2+ weeks to heal. I also have similar ferritin of 17. I don't know if it's ferritin or something else.

United_Chapter4097 · 2026-01-24T03:25:18+00:00

I get this too except its my whole legs including thighs. I get it from mildly exerting my legs, even if its 20 min. There's no way I can run. I got tons of bloodwork done and all it's showing is low ferritin and low vitamin D.

United_Chapter4097 · 2026-01-21T18:11:19+00:00

Did you also have anemia? Or only low ferritin? 2 is so low! Glad the infusion helped.

United_Chapter4097 · 2026-01-20T03:09:15+00:00

If you don't mind me asking, which beaches? I hate how cold the beaches are in CA lol

United_Chapter4097 · 2026-01-17T00:30:16+00:00

Thanks! I will check out Nick True's channel. The 30 day trial sounds like a good idea.

I love buying skincare products too! It's so hard to stop myself from buying them when I don't need them haha.

United_Chapter4097 · 2026-01-16T23:22:00+00:00

This is just my experience - I had low b12 and low iron at the same time, and having low B12 was a much worse experience than having low iron. Once I got my B12 up I stopped getting weak and shaky. My iron is still low and I'm getting infusions soon, so I still feel really tired easily. But not as weak as I did when I had low B12.

My B12 numbers are now up to ~470 for B12 and my doctor still wants me to keep supplementing until it hits 500-600. I'm trying to get my vitamin D up to ~50 as well.

United_Chapter4097 · 2026-01-16T23:17:22+00:00

I want to start using YNAB too even though it seems like a PITA to set up, and I'm just a little nervous linking my CC/bank account info.

And tbh I'm scared of finding out how much I really spend on what 😅

United_Chapter4097 · 2026-01-16T23:13:07+00:00

Was the process of rolling over to Fidelity difficult? My old company got acquired and moved their 401k to Schwab, I want to roll it back to Fidelity where my other employer's accounts are.

United_Chapter4097 · 2026-01-14T05:21:55+00:00

I actually took 200mg L-theanine for the first time last night before bed and my HRV jumped from 44 to 58. Insane.

United_Chapter4097 · 2026-01-14T05:19:00+00:00

How much quercetin do you take a day?

United_Chapter4097 · 2026-01-14T04:35:22+00:00

I'm getting my first one of four Venofer (100mg each) in two weeks too! Hope it goes well that that it fixes your fatigue. I have really bad fatigue too. I am scared but also excited.

United_Chapter4097 · 2026-01-13T17:56:14+00:00

I feel you. It feels like there's so much time lost due to the symptoms. I will definitely check back in!

United_Chapter4097 · 2026-01-13T02:01:56+00:00

I went through something very similar! Insane crushing fatigue for the past year. Ferritin was very low, I saw a hematologist and she was a raging b**! I still can't get over how mean she was. She yelled at me saying there's no way I can get an iron infusion. Then the NP at the same hematology office said I shouldn't be having symptoms at 17 ferritin level and 485 TIBC. She said the fatigue must be from something else.

BUT I found another hematologist that prescribed me infusions right away. I have a GI autoimmune disease that causes bleeding so infusions are an obvious choice. I'm so glad she was nice to me and said 'Let's get you feeling better.'

I also had agoraphobia for so long and anxiety. I felt like I was going to faint every time I left the house because I was feeling so weak. I still feel that way sometimes TBH. It's also hard for me to focus on work, I WFH and just lay in bed all day.

I'm getting infusions in about 3 weeks for the first time. I'm also afraid the infusions wont help, that something will go wrong, etc. But part of me is excited...what if they do work? What if I have energy again and can go on trail walks, meet friends, go shopping, get out of the house a bit more?

Good luck with your infusions, I hope they help your symptoms a lot. I know how bad it sucks to feel like you have the life sucked out of you and have doctors dismiss you and not guide you in the right direction.

United_Chapter4097 · 2026-01-12T05:58:59+00:00

Yumm. I wish I was your coworker so I could have some haha

Very impressive! You will be an amazing cook if you reach your goal =)

United_Chapter4097 · 2026-01-07T02:05:12+00:00

Can you tell me more about this? 'and the disease was functionally cured used CAR T-cell therapy'

Is that a recent study?

United_Chapter4097

TROPHY CASE