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@emfish18 Hello 👋🏻 from Kissimmee! Excuse the lengthy comments I tried to set the context.
Thank you so much for sharing your experience. Hopefully you get your answers soon and everything goes well for you. 🌼
I had been having lots of symptoms (on my other discussion about diagnosis I did a list of symptoms) multiple visits to hospitals I’m so ill now. I have history of neuroendocrine rectal cancer NED on 2019.
I can relate to the most part to your journey. I was/am iron deficient for months but my hemoglobin was high or normal ranges so no investigation was done even with history of unexplained hemorrhagic gastritis on February + high tumor markers (CA 19.9, Chromogranin A, etc). I had massive changes on my cycles and bladder issues. Finding on PET scan from March showed uptake on uterus+ “physiological uptake” all small/big bowels and the MRE shows the size of a fibroid. My local OBGYN March did a TUS to check stating the best way was the US for fibroids, it wasn’t visualized so no help there and just changed OBGYN. The urologist also suggested laparoscopic exploration since he found spots he suspected is endometriosis. My recent follow up colonoscopy showed lymphocytic aggragates and edema but they say it’s normal. On bone scan of September I had new degenerative changes but still no biopsy or further investigation.
I’m in need of infusions but locally it’s been a nightmare… my mom had to send me PR 🏝️ made supplements that aren’t pills cuz my GI issues are so bad and it’s being attributed to my POTS Dysautonomia, HSD, Fibromyalgia and diet… none sense honestly.
I took an independent genetic testing and I have a gene that’s related to fetal hemoglobin, androgenic alopecia, MTHFR, higher than average risk of melanoma, breast, and colon cancer. Just found a Pineal gland cyst that wasn’t there on my 4 previous MRIs of brain. I dunno what all this could be playing but I’m going to discuss this with the team. I don’t mean to over concern you with all this honestly it’s just my personal experience. There’s also a common link with mal absorption and some times it could be managed even reversed but it’s very important to know the root. I do hope they get your answers as soon as possible sending best vibes/prayers for you 🙏🏻🌼
I was trying to see what can help my iron levels, like supplementation since the locals are making it so hard for me. Had anyone used vitamin C to aid the process of absorbing the iron? I found some research on this but I would like to know peoples experiences.
Thanks again for sharing 🙏🏻 Blessings of healing always for everyone ❤️🩹🌼🤲🏻
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@lidiana and all...I just read your message and wonder at all that's happening at what appears to be a young age. I've had iron issues for most of my adult life. I'm 75 now and just had 1 iron infusion last Wednesday with the 2nd this Wednesday. I'm thrilled.
My iron is tested regularly by my sleep doctor as a very low ferritin level was first discovered last year by her testing due to severe restless leg syndrome, severe fatigue, and lots of other symptoms for years. It seems RLS is often a symptom of low ferritin levels.
FYI: my hemoglobin numbers are and always have been normal, even good. My ferritin level, the level of a protein that transports iron to the blood and organs, was 15 last year. I think that's the first test for ferritin I'd ever had. It appears my intestines don't absorb properly, as I have low D and B levels as well.
Yes, I take Vitron C, iron supplement plus C over the counter. 1 daily. That was prescribed immediately last year by my sleep doc. I brought the ferritin level up to 27 after a year of taking it. RLS needs the ferritin level to be as close to 100 as possible. Over 100 would be wonderful.
Last month, after a lot of crazy issues with my PCP and the medical system he's with, I finally sent a portal message to my sleep doc with the results of the other medical system tests. My hemoglobin was fine so the PCP didn't want to consider any issue possibility with iron. Little does he know about this and me...
My Mayo sleep doc had a ferritin test at Mayo and results showed a level of 57, from a high last year of 99. Not good. I was having all the symptoms of severe RLS and increased sleep interruptions, increased leg/ankle/foot pain, increased hand/wrist pain, extreme fatigue worsening again, overall feeling horrid. I knew I was anemic, but couldn't get the PCP to pay attention to the correct test levels.
So, the Mayo sleep doc ordered 2 infusions of ferrous oxide. After the 2 I had last year, I was a completely different person, with boundless...for me...energy, a positive outlook. A feeling of a new life I thought wasn't possible. Well, it was. It was wonderful for months until the symptoms began returning and I went downhill pretty fast.
I give myself B12 shots 2X monthly for decades due to poor absorption. Take B-Complex, CentrumSilver for Women, Zinc, D3, magnesium, and other supplements. I also continue 1 daily VitronC Now, my PCP has ok'd a B12 shot weekly. I'm thrilled!
After this Wed and the 2nd infusion, I'm hopeful I"ll see a good uptick in energy and all the other good things proper iron in the body produces. I'm already sleeping better re the RLS and foot/leg pain. It's lessened in the last couple of days. I am still quite weak, having issues with fatigue and dizziness/fainting on changing positions. Oh, my hair was falling out. Hope that improves in the next few weeks!
Once again, I remind each of you to be your own advocate re your health care. Be persistent. Ask reasonable questions and wait for the answers. Be strong standing up for your health and well-being, but not to the point of being obnoxious or becoming obsessed with your body issues. It's a fine line we in poor health or with unusual issues must find for ourselves as we walk this journey. We must be good advocates for ourselves, but not become obsessive about health issues or diagnosing our own symptoms. Fine line but we can achieve this if we continue to share and help one another. And, please don't forget to accept your body, and your health as it is. We must fight until we get good, reasonable diagnoses, but then accept the issue and move forward to help deal with it best as we can. Once you get a good doctor who gives you good diagnosis, you can work together to improve your daily life by accepting the facts of your health limitations.
What a relief that is to move forward. I hope you find your answers, get the treatments you need and your health journey takes on new light and joy. With the acceptance of the place, you are at this moment. Good journey for you. Be blessed. Elizabeth