u/quivivraverraa

hi all,

i recently posted about my situation in other subs, but i just found out that my vitamin d was at 28 and my ferritin was at 7. so now i’m wondering if this is combo is a key factor as to why i’m in so much pain. my doctor just told me to start taking 5000iu and im working with a hematologist for my ferritin and blood issues now. i had no idea vitamin d acts like a hormone?? i also have pcos (now pmos). so far i’ve learned on here vit d needs to be taken with magnesium and vitamin k as well. anyone else have a similar story with their combined low levels or vit d and ferritin? any advice with starting out on fixing my levels would be greatly appreciated, but i will continue reading through advice and support throughout this sub

never posted on this sub as i am new to reddit, but i want to pose a warning to anyone considering trying accutane - almost two years ago this drug ruined my life. it gave me intracranial hypertension and i now have chronic pain almost every single day from a constant headache and eye pain, as well as nerve damage in my eyelid. if i could go back in time and have never taken it, i wish that i could. if you have even a glimmer of a headache while starting it, please tell your doctor immediately.

hello everyone,

i’ve (30F) never posted on reddit before so please forgive me, but i want to see if anyone is in a similar position or has any advice. i do have a follow up appt with my hematologist next week and am waiting on some results but still wanted to make a post while i wait.

some background for context- i have PCOS (now PMOS), was diagnosed in 2020 after having symptoms my whole life, but no doctor ever told me an irregular period wasn’t normal so i never knew. finally in 2020, i lost my period for at least six months which made me go get checked out, and they told me i had pcos and put me on sprintec birth control which was the beginning of the end for me…it gave me insane cystic acne which i’ve never recovered from, and i was only on it for three months. i gained a lot of weight and eventually went on accutane when i really shouldn’t have about two years ago. i had a SEVERE neurological reaction to the accutane and was told it likely gave me intracranial hypertension when it gave me what i can only describe as the most intense migraine i could ever imagine, and i’ve never fully recovered. i have had a pretty constant headache almost every day, all day, for almost two years after being on it, and i only took it for one month. i was hospitalized and had several scans and a lumbar puncture and have tried diamox and topomax to lower my pressure but nothing really helped my pain much besides possibly losing weight on zepbpund for a while, but i think that’s bc it lowers inflammation maybe.

also to note- i do believe some of my issues are related to long covid, my first known infection was symptomatic in june 2023 and second was asymptomatic in july 2024, right before i started accutane. covid has been proven to cause intracranial hypertension as well as menstrual issues. i was living in new york at the start of the pandemic and was briefly sick in january or february 2020 which was around when i lost my period, so it’s possible that was actually my first infection which caused me to lose my period for all those months, meaning following my third infection is when my symptoms really took off). i also unfortunately contracted mono around the same time in summer 2024 but didn’t find out until september due to its very long incubation period, so essentially i had two viruses wreaking havoc in my system before i then made it worse by taking a neurotoxic medication for acne.

throughout the past few years of seeing specialists, no doctor EVER suggested i test my iron and ferritin. i kept seeing ppl talk about it on tiktok so i finally asked my GP a couple weeks ago to test it. my ferritin came back at 7 ng/mL, my total iron at 65, saturation at 16% and binding capacity at 415. they also tested my vitamin d which came back insufficient at 28. as soon as i saw the results online i called several hematologists to find one with availability to make an appt asap and then called my GP to have them send my results over. my GP only wrote a note to start taking iron and vitamin d pills…one week later i got in to see a hematologist who said that it was very odd that i was clearly iron deficient but my hemoglobin, hematocrit and red blood cells were too high, especially as my periods are short and very light due to pcos, so she wanted to test them again and ordered a few genetic marker tests like jak2 among others to rule some things out. she diagnosed me with iron deficiency and secondary polycythemia. she also tested b12, which was on the lower end at 368. i have my follow up with her next week, but both my hemoglobin and hematocrit came down at the retest, though my red blood cells only a small amount, so im wondering if dehydration caused them to raise before the test with my GP bc it was early in the morning and i don’t think i’d had much water.

i wasn’t expecting my ferritin to be in the gutter when i asked for this to be tested, and assumed all my symptoms were bc of pcos, intracranial hypertension from my accutane complications, or other possible issues due to my past covid infections, but now i’m wondering if this is a key factor in some of my symptoms like extreme fatigue, constant one sided headache, burning and scalloped tongue, major hair loss, red band at end of weak and brittle nails, white spots on nails, heat hives and white spots on my skin after a hot shower (newish symptom), racing heart/palpitations, breathlessness, anxiety, brain fog, chest pain, eye pain/droopy eyelid, among others.

i didn’t intend on writing a novel here, but if anyone has any insight on a similar situation or experience, any advice they could give that may help, i would greatly appreciate it. the past two years have been hell for me and my mental health has taken some dark turns. thank you for reading and for listening

edit: cbc test at the time my iron and ferritin were tested were hgb: 14.7, hct: 45.7, rbc: 5.1 and a week later for hematologists test they were hgb: 12.8, hct: 38.6, rbc: 4.41. my mpv went down to 9.1 at the second test and is marked low and my mchc is at the low cutoff at 33.2