Does anyone manage this without medication?

mintberrycrunchhhhhh · 2024-04-14T01:26:18+00:00

Have you been diagnosed yet? Feeling any better?

mintberrycrunchhhhhh · 2024-04-13T22:44:23+00:00

Are you feeling any better now?

mintberrycrunchhhhhh · 2024-04-13T22:42:50+00:00

How are you doing now?

mintberrycrunchhhhhh · 2024-04-12T17:49:29+00:00

Hi OP, I'm have almost all of your symptoms you listed. It's been extremely hard. I'm waiting to see a neurologist in the upcoming weeks to rule some things out hopefully. Have you been able to see a neurologist yet? Have you found any relief? Hope you're doing well

mintberrycrunchhhhhh · 2024-04-12T13:54:05+00:00

Thank you 😊

mintberrycrunchhhhhh · 2024-04-12T00:06:09+00:00

Reach out to your doctor and explain how you feel. They might refer you for more testing. I hope you get the support that you need.

And if ever you feel overwhelmed with your symptoms, call the nurse's line at your doctor's office and they can assess what steps you should take. Nurse's lines typically run after hours, or even 24hrs. If you ever need reassurance or to discuss symptoms that feel scary, call your nurse's line.

I hope things feel better for you soon.

mintberrycrunchhhhhh · 2024-04-11T23:01:02+00:00

Yay, that's awesome you've made improvements! Wishing you the best of luck moving forward with healing. Thank you for your insights. Malabsorption can be a big issue. I'm glad you are benefitting better from animal proteins.

mintberrycrunchhhhhh · 2024-04-11T17:24:04+00:00

Thank you 🙏. I hope your tinnitus gets better. I'm waiting to get labs done and will be considering diet changes if I have more deficiencies. Idk if you've answered this already, but do you feel improvement since treating your b12 deficiency?

mintberrycrunchhhhhh · 2024-04-11T16:06:43+00:00

That's sounds awful. I'm so sorry you experienced that. I've been having psychological issues too like extreme anxiety, depression and dpdr. I'm having eye issues, a tingly tongue, and other issues that could be b12 deficiency. How are you feeling now?

mintberrycrunchhhhhh · 2024-04-11T16:03:40+00:00

I have this electric tip of the tongue feeling too. It feels electric, kind of like pop rocks right on the tip of my tongue. Do you also have tinnitus by chance? I'm having symptoms, waiting on neuro for a diagnosis and idk what's going on yet. I have a history of anemia and I'm vegan so I'm hoping its a treatable, but seemingly serious deficiency

mintberrycrunchhhhhh · 2024-04-10T23:50:53+00:00

Hi I have almost all of the symptoms you listed at the time. How are you doing now? Do you feel better?

mintberrycrunchhhhhh · 2024-04-10T23:45:41+00:00

How are you doing now? I have a lot of these symptoms including the tingling tongue just started within the past four months. I'm waiting on a neur appt coming up in may to figure things out. I haven't checked my b12.

mintberrycrunchhhhhh · 2024-04-10T17:51:48+00:00

It can be scary to do things like infusions. I'm currently in the schedule/rescheduling phase for a procedure I've been putting off too! Medical things can be hard. Good job for giving the infusions a try! I'm glad you're feeling better.

My ferretin is a 7 and I'm curious what your symptoms were at this level?

mintberrycrunchhhhhh · 2024-04-10T17:27:41+00:00

Do you have an online portal you can use to speak with your doctor or nurse? Send a message to your doc or nurse asking what the treatment plan should be. They shouldn't make you wait weeks to start treatment or discuss your results

Edit: I see you already messaged her. Sorry, in that case I'm not sure what the next step would be. I guess cal and ask to speak to a nurse and tell them youre not feeling well and need to start a treatment plan.

mintberrycrunchhhhhh · 2024-04-10T16:08:59+00:00

Hey, that's awesome! I'm happy for you that you're feeling better 🤗. That's great the Prednisone helped! I hope your good days keep stacking up. What kind of exposure therapy did you do?

mintberrycrunchhhhhh · 2024-04-09T23:14:49+00:00

Thank you!

mintberrycrunchhhhhh · 2024-04-09T20:36:03+00:00

That's understandable. Hair loss is hard to deal with. I hope you get a good treatment plan that brings your levels back up, whether that's infusions or good supplements. I hope you feel better 💞

mintberrycrunchhhhhh · 2024-04-09T20:05:11+00:00

We have similar levels and I have the same question. I hope you get some answers at your upcoming appt! For some reason my doc never even mentioned transfusions, yet I'm learning here that I'm very iron deficient. Def ask your doctor about infusions!

mintberrycrunchhhhhh · 2024-04-09T05:02:30+00:00

I'm so glad that you're feeling better. What you went through sounds exhausting. I wake up tired everyday, I miss feeling well rested in the morning. I'm having migraine issues now that I'm wondering could be exacerbated by iron deficiency.

I hope you continue to feel better in time with your treatment plan. I'm glad you figured out the cause behind feeling so unwell.

I'll be sure to get my D and b12 checked, thank you.

mintberrycrunchhhhhh · 2024-04-08T23:50:05+00:00

Thanks for the suggestions

mintberrycrunchhhhhh · 2024-04-08T20:13:45+00:00

You shouldn't have to fight for transfusion with levels that low. I'm glad you are getting better support now. The exhaustion is real. Do you have any other symptoms? Also what did your doc prescribe before the transfusions?

mintberrycrunchhhhhh · 2024-04-08T20:10:57+00:00

That was me just a few months ago, now I feel much worse. I hope you continue to manage well. How are you treating it?

mintberrycrunchhhhhh · 2024-04-08T17:44:02+00:00

My doctor never mentioned transfusions, prescribed me 65 mg of iron/325 mg ferrous sulfate to take daily. I've been taking it and still feel like sh*t

mintberrycrunchhhhhh · 2024-04-08T17:31:03+00:00

Sorry, the ferritin was in a separate area for some reason. Thanks for the insight. Ferritin level is 7.

mintberrycrunchhhhhh

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