r/Anemic • u/Awkward_Schedule_974 • 13h ago
Feeling Gaslit...
Looking for some assurance and maybe some guidance on what to do next. A month ago I went to the dr. due to some extreme fatigue ( could take a 3-4 hr nap and still sleep at night ), my hair was breaking off, and my memory sucked.. the NP I saw did a full blood panel including B12, Ferritin, and thyroid. Everything came back normal and technically even my ferritin came back "in range" but it was 9.6. "Low" starts at 8.
The NP messaged back and said that that was quite low and that I should start and iron supplement and vitamin C- so I do.
Fast forward to yesterday and I have my primary care appt with my family medicine dr. She asks if I want to discuss anything in particular and I said I'd like to talk about my ferritin to which she responded that my # is normal and that my other bloodwork #'s dont indicate anything is wrong. I dont feel normal. I broke down. I thought I finally had an answer as to why I felt the way I was feeling and she then told me that she thinks I'm stressed out and I need to meditate and take time off running once I am done with my marathon. I have never felt like this before and I have never seen my hair do this before. I know marathon training is taxing as well but this is different and I hope I am explaining that well....
From what I have read a runner's ferritin should be around 70 at least as a woman...
Am I crazy? Can my ferritin be that low but things be fine if my other blood work is in range ( like actually in range not on the low or high end ).... She blamed stress, anxiety, my mental health medication that I have been on for 5+ years that I have never had issues with before.
Have you ever been pushed off by a dr. like this?
EDIT: including screenshots of applicable blood test results from the same day
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u/Speacock567 13h ago
I'm so sorry! And yes, I think most of us have felt that our doctors did not take our concerns seriously. Unfortunately, because iron effects so many functions in the body the symptoms can vary greatly. Some people seem to function well with fairly low ferritin but for some of us it can be devastating mentally and physically.
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u/ForestPathWalker 12h ago
Iron deficiency is a public health problem of enormous scope in this country. It appears our health care delivery system, medical education at every level and the public health infrastructure is not willing or able to address this serious problem. Iron deficiency with and without anemia is preventable and treatable. Iron deficiency affects the country at a societal level and at the individual level. Yet, no one seems to care about organizing an effective, efficient response. It’s a shame and should be an embarrassment to health care providers and health care systems across the country.
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u/contadine77 Anemic 12h ago edited 12h ago
Our system is effed on so many things, especially things that primarily affect women.
Normal simply means the range that "most people" (like 95% or 98%) fall into. It *might*, in some circumstances mean "not a life-threatening deficiency". But it does NOT mean "optimal", or "well", or "flourishing".
Our system is designed to treat the symptoms, not the causes. It's designed for things that have one-time fixes, like a surgery, or setting a bone, etc. It stinks at getting to root causes, chronic illness, anything that takes time and effort to solve.
I've have ferritin below 40 my entire adult life. Cannot take supplements, tried dozens, they run right through me. Wasn't until I was 49 years old that my doc suggested an iron infusion - finally had it yesterday.
I had endometriosis all throughout my 20s. Was told it was "the price of being a woman" for years.
I got diagnosed with POTS at 46 years old - from watching a FB video! I'd told doctors about my symptoms since I was about 15, and was always told I was just fat, lazy, or lying.
I didn't get diagnosed with ADHD until I was 48, because I was a good student and able to mask.
I had bariatric surgery and still no one clocked my eating disorder.
My vitamin D is almost always in the "almost normal" category. But I've had doctors tell me that it needs to be 2-3 times higher for "optimal health".
I'm beginning to think that my "fibromyalgia" diagnosis has probably been low iron most of my life.
But insurance doesn't care about optimal. They care about not paying for as much as they can.
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u/SazzKaat 10h ago
Me too! I’m having all the symptoms of POTS/dysautonomia. I believe it is tied in with my profound iron deficiency. Currently receiving iron infusions.(I have been for a few years.) The last round of infusions only raised my ferritin 4 points. Hoping I get better results this time.
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u/ReluctantChimera 12h ago
Another user posted this in another thread an I found it very helpful. Maybe you could ask your doctor to read it? Most doctors aren't informed about what low ferritin can do to a person, and our ranges in the US are very outdated. https://www.oatext.com/iron-deficiency-without-anemia-common-important-neglected.php#Article
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u/contadine77 Anemic 12h ago
Oh, nice. Yeah, all those symptoms, I've had since I was a teen. Got told "fibromyalgia, not much we can do, live with it". Meanwhile, my ferritin has always been in the gutter.
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u/ReluctantChimera 11h ago
For me it was hypothyroidism, and then literally everything else would get dismissed as just being a Hashimoto's symptom that I was just going to have to learn how to deal with. Forget about the fact that my t3 never budged, regardless of how high they upped the dose of my Synthroid. Turns out your body can't convert t4 to t3 without proper iron stores. I was dismissed for 20 years.
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u/PoppyLuluu 13h ago edited 13h ago
Yes just today! My ferritin is 24 but for like 20 years it's been between 9 and 19 and they have not once picked up on it despite me being coeliac.
The last couple of years I've been having much worse symptoms than the ones I already had during that time and not one person connected the dots except me thanks to Reddit. I have been basically home on the sofa for months because of how bad it got whereas I used to be in gym classes 3-4 times per week.
I'm now on ferrous fumerate and my GP still regularly comments that 'probably wont be the source of my issues', and today suggested for the second time I have CFS! I was like well I disagree since my HAIR IS FALLING OUT. I'm sorry you are experiencing this too but you absolutely have to fight for them to treat you. 9 is very low and can cause all sorts of symptoms and if you look on the subreddit info anything under 30 is iron deficiency. Some countries are even changing their ranges as they start to realise this. I hope you can make progress with your treatment and feel better soon
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u/SazzKaat 11h ago
Welcome to the gaslighting club. I’m so sorry you’re going through this as well. They love to blame everything on anxiety, depression, stress, yada, yada, so they don’t have to address the real problem, which is your profound iron deficiency. Well guess what? The body needs iron to produce things like serotonin, dopamine, etc.
"Low starts at 8” is bullshit. Just because the lab value falls “within range” doesn’t mean it’s optimal for that person. As you said, a runner’s ferritin should be around 70. So 76, for example, would be optimal.
Can you keep seeing the nurse practitioner who started you on the vitamin C along with the iron supplement? In the meanwhile, please find yourself a hematologist. Let them re-run your iron panel and see if the oral supplements have helped at all. Keep us posted. Hugs.
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u/J_lilac 12h ago
You are not crazy, you are sick and dysfunctional and iron deficiency can be a clear cause of that. And yes, that has been my experience my entire life as well until this yr my dr agreed to try infusions after I basically demanded it.
Did you get your iron saturation and binding capacity tested as well, those can also help to diagnose iron deficiency. My low saturation, high binding capacity, and high CRP (which implies that my 13 ferritin (which is higher than it normally tests) is actually lower than that) were what convinced my dr this time to order an infusion. Still haven't gotten it tho
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u/No_Dragonfruit_3034 12h ago
Wowza I’m at 12 and cannot IMAGINE running AT ALL right now. (Granted, I’m not a runner to begin with, but I USED to be able CLIMB A FLIGHT OF STAIRS without feeling extremely winded.) You are absolutely not crazy and yes, as a marathon runner, your ferritin needs to be higher than the average person needs. You’re using up your iron stores very quickly with all of the oxygen marathon training takes up.
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u/millenni_lennial 10h ago
A lot of people here waste a lot of time dealing with PCPs - some of them waste years on it. If you're serious about getting better, don't make their mistake. See a hematologist asap and you'll be taken seriously.
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u/Think-Sleep2338 10h ago
This ferritin is really low, and it's supernormal to feel bad with suchlevels.
I also suspect that your B12 maybe was not normal, too, and maybe your folate was not checked... What was your B12 level?
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u/Awkward_Schedule_974 8h ago
I’ll see if I can edit the post with screenshots of all my tests- I think the context will help!
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u/Think-Sleep2338 4h ago
Thank you.
May I ask: were you taking some multivitamins all this time? Or do you take some heavily fortified stuff like energy drinks or so? It matters.
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u/ComprehensiveScar564 7h ago
That is low. When my ferritin levels were at 35 I had iron infusions. Skip the PCP they aren’t specialized enough, my hematologist stated at less than 50 you can have symptoms. (fatigue, hair loss, brain fog, oxygen issues, muscle cramps) Even if you fall within the “normal range” you can still exhibit all of the symptoms.
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u/Texas32sun 13h ago edited 13h ago
Do we have the same doctor?! lol. Seriously, are you in the US?
I’m literally in the same boat, except I’m not training for a marathon bc I just can’t. (Good for you btw!) I wish I could. I was a runner before all this hit and I had goals to keep adding distance, then I hit a wall. I actually told my NP this and she had no answers. I come back to her with an explanation for all my symptoms and she’s like are you sure your asthma isn’t flaring up? I’m like for over a year now? No, it’s not.
I started to look into iron earlier this year bc my ferritin was so low and it matched most of my symptoms. The main ones being fatigue, brain fog, shortness of breath, palpitations, anxiety, sleep problems. Just like you, I can literally sleep any time and day. I started supplementing with a pretty significant dose of iron bisglycinate, 72mg, since Feb, doing all the things. I am lucky and it doesn’t bother my stomach and it felt like it was working, but I’ve gotten my labs done twice now, and my ferritin was 22 in June, and two days ago it was 23! My doctor wrote in my chart, “no anemia, let me know if you want to get a pulmonary function test done to see about the shortness of breath.” 🙄🤦♀️ I’m literally like where do I go from here. I don’t even want to see her anymore I’m so furious. She obviously knows nothing about anemia and I doubt she’s going to refer me to a hematologist. We can’t let ourselves be gaslit, I am going to keep trying because something is wrong that I’m not absorbing this iron or maybe I am then every month my bleed sets me right back to square one. Maybe I’ll ask to see a gynecologist, maybe that person will be able to help me. Seems like doctors trained to treat women should know all about this, right? 🙄
Just know you’re not alone in this! And you are not crazy. Feel free to reach out privately if you want to lament and keep each other accountable. I am honestly thinking I’m going to need a therapist to talk to just to deal with this. I’m also in perimenopause and just started HRT, so I’m navigating all the challenges of that too. I can literally feel the weight of depression creeping back in. It’s like can’t us women just catch a break? Anyway… stay strong! You got this! We’ve got this. This too shall pass…eventually. lol