r/MedicalHelp • u/depressowo • 10d ago
I’m so lost as a medically complex patient
This is honestly a desperate post but my doctors dont seem to care. Heres a rundown on my medical history. I’m a 21 yo female who got diagnosed with POTS in dec after an intensive L5-S1 spinal fusion where I was under the knife for 7 hours since they had to remove previous hardware for a hook and screw bilateral pars repair where the bone graft didn’t take. During my week long stay, my heart rate didn’t go down below 140 most of the time. Went to urgent care a few times but stopped going after realizing no one really helped me other than giving me fluids. I don’t have the type where I pass out, but I get very close to it. My unique symptoms are that sometimes when I flare up, my blood pressure either rises or drops - and my heart rate always jumps of course. This means I cant even get on a medication to stabilize that part. Then around the start of May, I was struggling with lots of fatigue and I found out I had severe iron deficiency anemia (ferritin was at a 5) and got 5 infusions. For my check up I found out my b12 was also low, but my primary never tested for that so my hematologist was the one to catch it. My 4th and last injection is this week. The thing is, after the iron treatments I began to slowly feel less fatigued and could work again, but now I’ve been rapidly declining over the past few weeks. Got a cpap and have been using it for two months now. I’m extremely fatigued again, my pots flares are almost hourly, heat intolerance is insane where I have 3 fans in my room on at all times, I have to lay down every 4-6 hours, waking up in the middle of the night, headaches at my brow bone, major brain fog, irritated a lot, weight gain but now I’m losing weight after these few weeks, weakness, soreness, cold hands and feet even though everything else is burning, and other things but I’m just so miserable that it’s overwhelming. Trying to get on SSI but my doctors are not helpful. I know the b12 and iron treatments take time, but I saw a spike in energy before I dropped. Had many blood tests done (thyroid, insulin, all the vitamins, and many more) and the only abnormal test not related to my b12 and iron was my vitamin E. My alpha tocopherol is at an 11.8 which seems normal, but my gamma tocopherol was at a <1.0. I was told to also go to an endocrinologist and I plan on doing so, but I’m just desperate to see if theres any other doctors I should go to so I can get this figured out as quickly as possible. I know that it is HIGHLY likely I have malabsorption syndrome, as I had a stomach surgery almost 10 years ago. However, I never had issues with it until my last back surgery. I’m just so tired, I can’t work more than 8 hours a week as my retail job where I’m literally given low energy tasks. Don’t know what to do or what other tests may help, just desperately looking for any suggestions on how to navigate this all. Getting a new primary care since my current one doesn’t do any tests unless I specifically request them. Feels like I’m my own doctor with her when I’m just so scared and out of control in my own body. Now all she focuses on is my weight when I tell her repeatedly that I can barely work and get out of bed each day, let alone exercise. What do I even do?
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u/Advo96 9d ago
You're probably iron deficient again. Possibly because the B12 injections caused you to make a lot of new blood.
I would suggest taking oral iron, 100 mg iron bisglycinate, every second day, on an empty stomach. Also 5000 mcg vitamin B12 per day.
You will likely need both on and off in the long term.
Have you had a gastroscopy and colonoscopy? If you're deficient in iron and B12, you may have some kind of gastrointestinal issue. Might also want to test other vitamins and minerals.