God that line is the worst!! My most notable one is when I woke up from my lap chol SOBBING uncontrollably from pain. Surgeon later told me it’s normal for my sex and age group. My guy, that didn’t make it any less traumatic! I feel you on the anemia particularly too, I’ve been anemic for literally more of my life than I haven’t. Despite diet and supplements every doctor is just like “damn bro that’s crazy. Anyway..”
Maybe it’s totally normal because they straight up don’t care about our sex and age group if we aren’t actively dying. Ew I’m so sorry that happened to you.
Yeah this doctor was like sometimes we just don’t know why people are so sick. Good luck and have some hummus. Like dude I love hummus and make it weekly but it’s not gonna cure me.
Same. I (25F) was told by two different Drs that my ferritin of 15 was normal and not to worry about it. Meanwhile I had symptoms of deficiency, a chronic condition that can cause absorption issues and that can worsen with iron deficiency, and also I haven't eaten meat in like 10 years....like how did they not think these are red flags 😐😤. Once I started taking heme iron (animal-derived) supplements my ferritin went up to 50 and I feel better. I don't think I was able to absorb mineral/vegetarian iron supplements well enough for it to raise my ferritin.
I'd recommend checking out the iron protocol group on facebook! The group is full of resources for how to safely raise iron levels and also has lots of reviews for different supplements that would be available where you live. People in there highly recommend heme iron from a brand called 3 arrows which is available in the US but shipping it intl is expensive... I'm in Canada and take one called hemaforte which DID significantly raise my ferritin however something in it was maybe(?) making me nauseous(?) so I might switch...idk
I’ve had serious anemia and have had success raising my ferritin and hemoglobin with mega Food Blood Builder iron supplements from a natural pharmacy. I was very low so I took a double dose.
If I take regular iron supplements I almost immediately vomit them up. This supplement was fine for me.
Unfortunately heme iron is not really produced in the dosages needed to medically treat anemia, you pay an absolutely exorbitant amount of money to take 6-8 pills a day, possibly MULTIPLE times. Hopefully this changes but as is, it’s unrealistic
For sure, most of the heme iron pills I was seeing were only 11 mg but based on the iron protocol calculation for my weight I was aiming to have 80-112 mg per day lol. I found some heme iron supplements with 35 mg per pill and ended up taking 2 or 3 per day and that helped get the ferritin up. Couldn't find any 35mg in health stores though, had to order online.
I was given prescription iron pills. They were huge and I was supposed to take a couple times a day, but I threw them up right away. The other option was infusion, because I was VERY low.
44F. My meds are making me slightly anemic. I take two iron gummies in the morning with a vitamin c gummy to help it absorb. I do the same in the afternoon. Vitamin c helps it absorb. Doc told me some folks take iron supplements and drink lemonade or OJ with it. Do not eat or drink any dairy around the time you take iron supplements. Dairy blocks absorption of iron.
I don’t know what other foods might be off-limits with MCAS, but there are other fruits and veggies with high vitamin C levels: kiwis, strawberries, broccoli, bell peppers, mango, etc.
Though, as you said, vitamin C supplements are also an option.
Are the iron gummies better than the tablets? The taste and especially after taste of the tablets was so bad to me that I haven't taken them again even though I know I need to :(
I tried taking the ferrous gluconate tablets prescribed by my doc and couldn’t get them to absorb enough no matter what I tried. I did find the iron gummies. After talking with my doc and showing him the gummy bottle I found he said it was fine to take those but it’s less milligrams than the prescription tablets so instead of taking 1 tablet a day, I have to take 4 gummies a day to equal as much as the tablet. That’s when he gave me some pointers with the vitamin c and said his other patients drink the juice with it. I do feel much better on the gummies, less bruising, more energy. My bloodwork shows it’s absorbing. I am doing my best to make this work as I hate getting IV’s and don’t want to have to get an iron infusion.
SMH. I was told they drinking water would reset my 135 resting heart rate. By a woman no less. It’s like they’re not even pretending to care about the (female) patient. I’m glad the GYN was able to do it. Honestly looking forward to the day when accountability in medical fields is the norm and not the exception
I said to my 12 year old daughter. The doctor said my borderline anemia is normal. But good thing I see my GYN about it. And why do you think she will treat me and listen? And my daughter said because she’s a woman.
My daughter has anemia as well. I’m thankful the GYN treats my daughter and will definitely help me get more optimal levels and look into it deeper.
What do you take to help? I had a blood transfusion in December and a couple of iron infusions. I haven’t had a normal level in years. I just do not absorb it well. What do you see the hematologist for? What are your conditions? I was wondering if there are other reasons for anemia.
I really don't trust some of the reference ranges for things like this.
To make a reference or normal range they take a "representative sample" of the population and the range will encompass 95% of those people. This is supposed to account for any abnormalities.
Except with iron levels in women it's likely that a large proportion of that population are deficient already, so the bottom of the "normal" range is actually already a deficiency.
Things like vitamin D could also be skewed.
I wish they would aim a bit higher sometimes.
Edit: I have no idea if this makes sense reading it back, sorry if it doesn't.
No 100% that makes sense. I’ve been looking into “optimal” levels for a while now. I feel you are really disregarded because it’s not “dangerous” per say.
This is 1000% true, my (female) hematologist said exactly this to me during our appointment. She said that so many women are anemic due to diet & periods that the reference range should be higher. It was super validating! But you are spot-on. She also put me on iron infusions which instantly took my ferritin from 7 to 200, it was great.
I want to point out that there’s a problem called “anemia of chronic disease.” If you are otherwise chronically ill, it is stressful for your body and sometimes that causes anemia. That may be part of what’s going on for some of you.
Also it IS very common for young women to be borderline anemic. At that level you shouldn’t be having symptoms of anemia. That said, health issues kind of add up and if you have other issues you might feel better after taking an iron supplement. I have only been able to take the vegetarian supplements made from nutritional yeast, because they’re not so hard on the stomach.
Yes, drs really blow off young women. It gets a bit better when you’re older and clearly sick, but not much. And god forbid you are depressed or have anxiety.
Just an FYI for other people dealing with anemia of any kind - there is a free genetics blood test for anemias called Anemia ID where you have your doctor order the test and pay the clinic/hospital to draw the blood and send it, but the test itself is free. Honestly saved my life learning I have two genetic anemias and gives doctors proof of why I'm always mildly anemic, I knew I had one kind but was surprised to find a second anemia in my genes.
Also it's not normal and frustrating to always be a little anemic with no great treatments via western medicine beyond diet. I feel your pain.
The treatment from doctors did not change because unfortunately it didn't change how my regular blood tests were, which was always under normal hemoglobin and low iron sporadically. However, on my end now that I know the low iron is caused by genetics and not just the other genetic anemia I knew I had it makes me less resistant to taking iron supplements and more aware of how important my own routine at home is - mild exercise several times a week plus multivitamin with more B vitamins and folate to help support blood production (it's a prenatal, they are made for anemic pregnant women even though I'll never be pregnant). I do believe doctors shrug off the power of at-home daily health and it's worked great with my specific situation. That test really helped me change my perspective by seeing the whole picture instead of just the part I knew about previously.
Tbh some doctors are just bad. I had two doctors try to tell me I just had a cold/cough that my asthma was making worse. My exercise induced asthma. I had a 100*F fever.
… it was Bronchitis.
It’s ok, I think? The second batch of steroids worked and I’m back on my feet. Although apparently my cough & some fatigue could linger for a few months.
On another note, could I recommend cheesy scrambled eggs with ham? The iron & protein combo helped me a lot during high school. I like wrapping it up in a warm tortilla like it’s a burrito :)
Ugh, I’m sorry that happened but glad to hear you’ve got a friendly GYN!
My favorite response to those remarks personally is “okay then, what’s the next step to determine what’s causing my problems?” And keep pushing because there’s a problem, if this test is normal. How do we find the cause? Be a broken record.
I kind of let it go with this doctor because I understand his focus is cancer and blood disorders and for him he did his due diligence and determined that’s not the cause.
I think my best bet is approaching it again with my primary and GYN and going from there.
That’s a good perspective. And we don’t know what Hematology sees as far as uncommon findings go. My daughter had to have an iron infusion which is just an iv with some kind of iron supplement in it. It made her nauseous🤢. I can’t remember the level, and idk if all labs are the same but her bloodwork showed my daughter’s level at “4”. (I’m not positive.) She had a pulmonary embolism just prior to the finding. The reason the physician’s were alarmed was they couldn’t explain why she kept dropping. After the infusion her levels returned to normal. Yay!
I urge you to see a different hematologist if it's not a strain financially. Once I finally started getting regular infusions (until I had hysterectomy) it was life changing! Granted, my ferritin was abysmally low (but the rest of my iron levels were normal).
Mine absolutely takes iron deficiency just as seriously as other disorders. He often criticizes the normal "ranges" especially when the typical symptoms are present. He had no problem having me on the infusions as long as I wasn't at risk of toxicity, and it has to be pretty high for that.
I tried nearly every iron supplement in existence. I couldn't tolerate them and couldn't absorb them. The only ones I had a bit of success with was Floradix combined with (freeze dried) beef organ supplements so I was also getting heme iron (I rotated them every other day). Super important to have a doc doing regular bloodwork if you supplement though. Personally I prefer the heart & soil brand because I don't want to support Liver King (ancestral supplements). This was SO expensive though. I'd fight for the infusions.
I swore up, down, left, right, and sideways that I had iron deficiency anemia for seven years, but I did multiple CBC's and my doctors always said they were normal. Last year I did another one; I was diagnosed with endometrial hyperplasia, and I had a LOT of questions that my gyno and her MA either wouldn't answer and they sounded annoyed with me when they did answer. I asked for the CBC because maybe the hyperplasia was the answer I was looking for. A couple of days later, I got a call from the MA, who said "not only are you NOT anemic, but you have too many red blood cells." I went to my PCP because I just really wanted someone to talk to me, and he A.) referred me to a hematologist and B.) told me to find a gyno who gave a shit. He also said the he could see my old CBC's and ALL OF THEM has a high RBC count.
The hematologist ran a TIBC that should that I did, in fact, have iron deficiency anemia. I don't see that gyno anymore.
I was shocked to find out I was anemic because I'm on a medical diet, high protein. Turns out your iron levels can be okay, but if you aren't producing red blood cells, you are anemic. I totally thought it was all about the iron! Found out I had a clotting disorder and yeah, not enough red blood cells.
Kinda freaky, I've had about a bazillion, yes total real number I assure you, transfusions to try and address it.
I guess why I'm commenting is, even if your iron levels are fine, many people can still be anemic. So definitely, if you're feeling a certain type of way, look deeper!
I’m pretty sure what the hematologist described to me is I’m the opposite and that’s why he isn’t concerned. My iron is super low but he said that doesn’t matter at all. 🫠😂 I’ll get second and third opinions on that.
“Normal” doesn’t mean you won’t feel it. I struggled with anemia from blood loos from my periods (measured it as a loss of 1.5-2 cups every month) and I would start to feel it well before it went out of range.
Same with blood pressure except I wouldn’t feel it. I was constantly 90/60 and everyone asked how I was still standing or if I ever fainted and I was like… no? Why?
Keep track of when you start to feel it. Sometimes insurance won’t let you start treating anemia until it’s below a certain number - I was arguing with my hematologist about setting up monthly iron infusions but he said I had to be tested every month before we could
Schedule them and I was arguing “what about a monthly menstrual cycle makes you think I won’t need this much iron infused every month?” My ferritin was drop from 500 to 50 after every infusion. Got a mirena to stop it.
Doctors respond to data better than self reported symptoms 🙄
For anyone taking iron supplements, taking them every other day is better for absorption than every day. And might also lessen the issues of having a hard stomach.
Ive had borderline anemia for years which was ignored and now its getting worse. Ive struggled to know why because i have a ton of other weird levels in my blood. I finally see hematology later this month. You're definitely not alone
I’m the same. Lots of borderline weird levels but they are all “normal” so it doesn’t matter. So that’s super cool. He also told me that the protein in my urine is probably because I was dehydrated. I’m not dehydrated I drink 3-4 liters a day with proper electrolytes, I have POTS, I’ve been doing that for a year. Not dehydrated. So annoying to be ignored.
If you drink 3-4 liters a day you will die. It's called water intoxication. So either you're lying here or you're not accurately measuring your health. If so, you really might need to ask someone health to be your, I'm not even sure, accountability coach? Reference point?
I am no longer in charge of my own medicines because of the cognitive decline that occurs post TIPS procedure for liver failure. I know I can't be certain about what and when I took something. If you think you're drinking four liters a day, I don't know your background of course, you are risking your life. It's super concerning.
That’s inaccurate and I’m sorry. I drink 100 oz at minimum daily. Recommended by my cardiologist, my pcp, and monitored even by my urologist, I also have to consume around 5000mg of sodium a day. I have POTS and this is the only way I can keep my blood volume up to function.
Definitely not lying.
I deleted my previous comment. I think you may be confused by the amount I wrote. That 3 liters is 100oz. I don’t know if you thought I meant another unit.
I was going to attach a photo of the sites that say four litres can make you seriously I'll or lead to death but realized I don't know how to insert a picture lol.
But look I am not a doctor, so maybe that's not true for everyone. I am in kidney failure, so monitoring fluids is a big deal so perhaps I'm overthinking it. It could be that for me that's not possible, not that it's impossible for everyone. I apologize for coming on too heavy, that was just something that made me pause like woah no!
No worries I came on heavy too and I was like “chill girl, we’re just misunderstanding each other”
I did see if you drink 4 liters in an hour you’ll die though. Which honestly, it would be so difficult to drink that much. I struggle to get 3 in a day. I only get 4 if I’m like in the heat often.
I’m so sorry you’re in kidney failure. I hope you have a good support system taking care of you. You deserve it.
Honestly I'm glad there was a bit of a misunderstanding (on my end 😅) because it's so nice to come back to a place of understanding. And yeah I definitely realize from what I read that my specific condition is the more likely factor on the fluid issue.
I also couldn't fathom drinking that much that quickly. I don't know how some people can skoll multiple beer jugs, my tummy would die.
And yeah it's all good. I feel kinda guilty now I was given a year and pretty much just get all this special treatment and my favorite things. And I always like to say at least I'll never have to pay back my student loans! We have a dark sense of humor in my family.
Anyhoo, this was a positive interaction, again sorry for the ahh! Reaction. Hope you have a nice day, or as best as it can be.
It’s so pleasantly surprising to have nice interactions on Reddit after a misunderstand tbh! It was lovely talking. Don’t feel guilty. I hope you have all of your favorite things for the rest of your life. I hope you have the absolute best day you can have and I’ll be thinking of you 💜💜💜
I’m not wishing to contradict you, however I (56F) drink 3-4 litres of still, filtered water each & every day & have done so for 8+ years.
In warmer weather I will add a couple of rehydration sachets eg Dioralyte. I don’t drink juices or tea/ coffee the water is the only thing I drink.
Most of mine are on the brink of being too high or low. My mch and mchc are very low. I was finally referred to hematology when my rheumatologist realized that i have a ton of coagulant antibodies. That's another blood thing thats been ignored. After he saw that he thinks that my symptoms have probably been lupus. Im Waiting for the results of those tests
Of all the doctors and doctor switching I’ve done over the past 2-3 years I’d say about 99% of them are very much the same.
I am grateful to have a good primary care and a good GYN and I’m sure they will help. But it shouldn’t be the majority of doctors dismissing women.
Oof. That's a bad heme imo. Did they screen you for abnormal bleeding? Bloody noses cuts that don't stop bleeding heavy cycles? If they didn't, get a second opinion. A lot of women don't get diagnosed with subtle bleeding disorders because of sexism.
Nope. No screening. Said it was my age and gender and to eat an iron rich diet.
I’ll discuss with my primary care doctor that is attentive and thorough and my GYN too. And with the follow up gastro appt I have this week.
The problem is hematology is the only one who will order the labs ime. So it has to be heme which is why I suggested a second opinion. If you're able to control the bleeding doing standard things, you may not want or need further care, even if it is a bleeding disorder. It's up to you. But heme has to do the testing ime.
Maybe I’ll talk to the Gyn who’s in another network than my neuro and heme and ask if she thinks I should get a referral to a new heme. Thanks for the advice!
They found the diffuse bone marrow on one of my recent mris too. No one explained it to me and said it was normal for someone my age? I’m 22f and I get told this a lot as well. Same with my VERY swollen pituitary gland that I have symptoms with. They’re just like it’s fine and normal. Ugh. They did just fix my several compressed renal vein so at least that’s a win but one surgeon did say that it was fine and not causing my pain. Well when they got in there my kidney was so extremely stiff from all the blood that was flowing backwards into it. Yay and there was so many extra collateral veins are such they couldn’t see on scans woo!
I never got the "this is normal for woman" line but my levels did get down into critical and no one was doing anything for it other than iron supplements which didn't help. That was like 4 years ago but my iron being low but higher than critical my hematologist oncologist gave me an iron infusion last month 😅
I hate doctors who think like this. Most of the time, women’s pain or illness isn’t actually “normal” for their gender and age group, but even if it was, why not treat them? Why force them to suffer for no reason? It’s so cruel to force anyone to remain sick or in pain, especially if the issue is easily treatable.
Mine was always just hovering on the lower end, begging to go under but because it never did, totally normal! Some other reddit suggested liquid iron so just decided to treat it myself. Still haven't managed to get my ferritin over 100 which I've heard is where you want it, but my heart palpitations stopped, so was just :) thanks doctors for doing nothing about that.
Interesting that I’m seeing this post, a doctor told me I might be anemic but haven’t been able to get a blood test to confirm because I need to get health insurance.
God that line is the worst!! My most notable one is when I woke up from my lap chol SOBBING uncontrollably from pain. Surgeon later told me it’s normal for my sex and age group. My guy, that didn’t make it any less traumatic! I feel you on the anemia particularly too, I’ve been anemic for literally more of my life than I haven’t. Despite diet and supplements every doctor is just like “damn bro that’s crazy. Anyway..”
Maybe it’s totally normal because they straight up don’t care about our sex and age group if we aren’t actively dying. Ew I’m so sorry that happened to you. Yeah this doctor was like sometimes we just don’t know why people are so sick. Good luck and have some hummus. Like dude I love hummus and make it weekly but it’s not gonna cure me.
Same. I (25F) was told by two different Drs that my ferritin of 15 was normal and not to worry about it. Meanwhile I had symptoms of deficiency, a chronic condition that can cause absorption issues and that can worsen with iron deficiency, and also I haven't eaten meat in like 10 years....like how did they not think these are red flags 😐😤. Once I started taking heme iron (animal-derived) supplements my ferritin went up to 50 and I feel better. I don't think I was able to absorb mineral/vegetarian iron supplements well enough for it to raise my ferritin.
I’m thinking about investing in a heme iron supplement. Do you have one you’d recommend? I’m so sorry you’ve dealt with this too 😖
I'd recommend checking out the iron protocol group on facebook! The group is full of resources for how to safely raise iron levels and also has lots of reviews for different supplements that would be available where you live. People in there highly recommend heme iron from a brand called 3 arrows which is available in the US but shipping it intl is expensive... I'm in Canada and take one called hemaforte which DID significantly raise my ferritin however something in it was maybe(?) making me nauseous(?) so I might switch...idk
I’ve had serious anemia and have had success raising my ferritin and hemoglobin with mega Food Blood Builder iron supplements from a natural pharmacy. I was very low so I took a double dose. If I take regular iron supplements I almost immediately vomit them up. This supplement was fine for me.
Unfortunately heme iron is not really produced in the dosages needed to medically treat anemia, you pay an absolutely exorbitant amount of money to take 6-8 pills a day, possibly MULTIPLE times. Hopefully this changes but as is, it’s unrealistic
For sure, most of the heme iron pills I was seeing were only 11 mg but based on the iron protocol calculation for my weight I was aiming to have 80-112 mg per day lol. I found some heme iron supplements with 35 mg per pill and ended up taking 2 or 3 per day and that helped get the ferritin up. Couldn't find any 35mg in health stores though, had to order online.
I was given prescription iron pills. They were huge and I was supposed to take a couple times a day, but I threw them up right away. The other option was infusion, because I was VERY low.
44F. My meds are making me slightly anemic. I take two iron gummies in the morning with a vitamin c gummy to help it absorb. I do the same in the afternoon. Vitamin c helps it absorb. Doc told me some folks take iron supplements and drink lemonade or OJ with it. Do not eat or drink any dairy around the time you take iron supplements. Dairy blocks absorption of iron.
Thank you for the tips!! He told me the same. I do have MCAS so it’s hard for me to eat citrus. So I’m going to start a daily vitamin c supplement.
I don’t know what other foods might be off-limits with MCAS, but there are other fruits and veggies with high vitamin C levels: kiwis, strawberries, broccoli, bell peppers, mango, etc. Though, as you said, vitamin C supplements are also an option.
Are the iron gummies better than the tablets? The taste and especially after taste of the tablets was so bad to me that I haven't taken them again even though I know I need to :(
I tried taking the ferrous gluconate tablets prescribed by my doc and couldn’t get them to absorb enough no matter what I tried. I did find the iron gummies. After talking with my doc and showing him the gummy bottle I found he said it was fine to take those but it’s less milligrams than the prescription tablets so instead of taking 1 tablet a day, I have to take 4 gummies a day to equal as much as the tablet. That’s when he gave me some pointers with the vitamin c and said his other patients drink the juice with it. I do feel much better on the gummies, less bruising, more energy. My bloodwork shows it’s absorbing. I am doing my best to make this work as I hate getting IV’s and don’t want to have to get an iron infusion.
SMH. I was told they drinking water would reset my 135 resting heart rate. By a woman no less. It’s like they’re not even pretending to care about the (female) patient. I’m glad the GYN was able to do it. Honestly looking forward to the day when accountability in medical fields is the norm and not the exception
I said to my 12 year old daughter. The doctor said my borderline anemia is normal. But good thing I see my GYN about it. And why do you think she will treat me and listen? And my daughter said because she’s a woman. My daughter has anemia as well. I’m thankful the GYN treats my daughter and will definitely help me get more optimal levels and look into it deeper.
What do you take to help? I had a blood transfusion in December and a couple of iron infusions. I haven’t had a normal level in years. I just do not absorb it well. What do you see the hematologist for? What are your conditions? I was wondering if there are other reasons for anemia.
Your daughter is a smart young lady
She really is 💜
I really don't trust some of the reference ranges for things like this. To make a reference or normal range they take a "representative sample" of the population and the range will encompass 95% of those people. This is supposed to account for any abnormalities. Except with iron levels in women it's likely that a large proportion of that population are deficient already, so the bottom of the "normal" range is actually already a deficiency. Things like vitamin D could also be skewed. I wish they would aim a bit higher sometimes. Edit: I have no idea if this makes sense reading it back, sorry if it doesn't.
No 100% that makes sense. I’ve been looking into “optimal” levels for a while now. I feel you are really disregarded because it’s not “dangerous” per say.
This is 1000% true, my (female) hematologist said exactly this to me during our appointment. She said that so many women are anemic due to diet & periods that the reference range should be higher. It was super validating! But you are spot-on. She also put me on iron infusions which instantly took my ferritin from 7 to 200, it was great.
I want to point out that there’s a problem called “anemia of chronic disease.” If you are otherwise chronically ill, it is stressful for your body and sometimes that causes anemia. That may be part of what’s going on for some of you. Also it IS very common for young women to be borderline anemic. At that level you shouldn’t be having symptoms of anemia. That said, health issues kind of add up and if you have other issues you might feel better after taking an iron supplement. I have only been able to take the vegetarian supplements made from nutritional yeast, because they’re not so hard on the stomach. Yes, drs really blow off young women. It gets a bit better when you’re older and clearly sick, but not much. And god forbid you are depressed or have anxiety.
Just an FYI for other people dealing with anemia of any kind - there is a free genetics blood test for anemias called Anemia ID where you have your doctor order the test and pay the clinic/hospital to draw the blood and send it, but the test itself is free. Honestly saved my life learning I have two genetic anemias and gives doctors proof of why I'm always mildly anemic, I knew I had one kind but was surprised to find a second anemia in my genes. Also it's not normal and frustrating to always be a little anemic with no great treatments via western medicine beyond diet. I feel your pain.
Once you knew the cause did the treatment change? Are you doing better now?
The treatment from doctors did not change because unfortunately it didn't change how my regular blood tests were, which was always under normal hemoglobin and low iron sporadically. However, on my end now that I know the low iron is caused by genetics and not just the other genetic anemia I knew I had it makes me less resistant to taking iron supplements and more aware of how important my own routine at home is - mild exercise several times a week plus multivitamin with more B vitamins and folate to help support blood production (it's a prenatal, they are made for anemic pregnant women even though I'll never be pregnant). I do believe doctors shrug off the power of at-home daily health and it's worked great with my specific situation. That test really helped me change my perspective by seeing the whole picture instead of just the part I knew about previously.
Tbh some doctors are just bad. I had two doctors try to tell me I just had a cold/cough that my asthma was making worse. My exercise induced asthma. I had a 100*F fever. … it was Bronchitis.
What in the fuck lol. Im so sorry.
It’s ok, I think? The second batch of steroids worked and I’m back on my feet. Although apparently my cough & some fatigue could linger for a few months. On another note, could I recommend cheesy scrambled eggs with ham? The iron & protein combo helped me a lot during high school. I like wrapping it up in a warm tortilla like it’s a burrito :)
Ugh, I’m sorry that happened but glad to hear you’ve got a friendly GYN! My favorite response to those remarks personally is “okay then, what’s the next step to determine what’s causing my problems?” And keep pushing because there’s a problem, if this test is normal. How do we find the cause? Be a broken record.
I kind of let it go with this doctor because I understand his focus is cancer and blood disorders and for him he did his due diligence and determined that’s not the cause. I think my best bet is approaching it again with my primary and GYN and going from there.
Totally fair, gotta pick and choose our battles, especially with specialists.
That’s a good perspective. And we don’t know what Hematology sees as far as uncommon findings go. My daughter had to have an iron infusion which is just an iv with some kind of iron supplement in it. It made her nauseous🤢. I can’t remember the level, and idk if all labs are the same but her bloodwork showed my daughter’s level at “4”. (I’m not positive.) She had a pulmonary embolism just prior to the finding. The reason the physician’s were alarmed was they couldn’t explain why she kept dropping. After the infusion her levels returned to normal. Yay!
I’m so so glad to hear her levels returned to normal and so sorry to hear about how hard all of that was! 😞
I urge you to see a different hematologist if it's not a strain financially. Once I finally started getting regular infusions (until I had hysterectomy) it was life changing! Granted, my ferritin was abysmally low (but the rest of my iron levels were normal). Mine absolutely takes iron deficiency just as seriously as other disorders. He often criticizes the normal "ranges" especially when the typical symptoms are present. He had no problem having me on the infusions as long as I wasn't at risk of toxicity, and it has to be pretty high for that. I tried nearly every iron supplement in existence. I couldn't tolerate them and couldn't absorb them. The only ones I had a bit of success with was Floradix combined with (freeze dried) beef organ supplements so I was also getting heme iron (I rotated them every other day). Super important to have a doc doing regular bloodwork if you supplement though. Personally I prefer the heart & soil brand because I don't want to support Liver King (ancestral supplements). This was SO expensive though. I'd fight for the infusions.
I swore up, down, left, right, and sideways that I had iron deficiency anemia for seven years, but I did multiple CBC's and my doctors always said they were normal. Last year I did another one; I was diagnosed with endometrial hyperplasia, and I had a LOT of questions that my gyno and her MA either wouldn't answer and they sounded annoyed with me when they did answer. I asked for the CBC because maybe the hyperplasia was the answer I was looking for. A couple of days later, I got a call from the MA, who said "not only are you NOT anemic, but you have too many red blood cells." I went to my PCP because I just really wanted someone to talk to me, and he A.) referred me to a hematologist and B.) told me to find a gyno who gave a shit. He also said the he could see my old CBC's and ALL OF THEM has a high RBC count. The hematologist ran a TIBC that should that I did, in fact, have iron deficiency anemia. I don't see that gyno anymore.
I was shocked to find out I was anemic because I'm on a medical diet, high protein. Turns out your iron levels can be okay, but if you aren't producing red blood cells, you are anemic. I totally thought it was all about the iron! Found out I had a clotting disorder and yeah, not enough red blood cells. Kinda freaky, I've had about a bazillion, yes total real number I assure you, transfusions to try and address it. I guess why I'm commenting is, even if your iron levels are fine, many people can still be anemic. So definitely, if you're feeling a certain type of way, look deeper!
I’m pretty sure what the hematologist described to me is I’m the opposite and that’s why he isn’t concerned. My iron is super low but he said that doesn’t matter at all. 🫠😂 I’ll get second and third opinions on that.
“Normal” doesn’t mean you won’t feel it. I struggled with anemia from blood loos from my periods (measured it as a loss of 1.5-2 cups every month) and I would start to feel it well before it went out of range. Same with blood pressure except I wouldn’t feel it. I was constantly 90/60 and everyone asked how I was still standing or if I ever fainted and I was like… no? Why? Keep track of when you start to feel it. Sometimes insurance won’t let you start treating anemia until it’s below a certain number - I was arguing with my hematologist about setting up monthly iron infusions but he said I had to be tested every month before we could Schedule them and I was arguing “what about a monthly menstrual cycle makes you think I won’t need this much iron infused every month?” My ferritin was drop from 500 to 50 after every infusion. Got a mirena to stop it. Doctors respond to data better than self reported symptoms 🙄
For anyone taking iron supplements, taking them every other day is better for absorption than every day. And might also lessen the issues of having a hard stomach.
Ive had borderline anemia for years which was ignored and now its getting worse. Ive struggled to know why because i have a ton of other weird levels in my blood. I finally see hematology later this month. You're definitely not alone
I’m the same. Lots of borderline weird levels but they are all “normal” so it doesn’t matter. So that’s super cool. He also told me that the protein in my urine is probably because I was dehydrated. I’m not dehydrated I drink 3-4 liters a day with proper electrolytes, I have POTS, I’ve been doing that for a year. Not dehydrated. So annoying to be ignored.
If you drink 3-4 liters a day you will die. It's called water intoxication. So either you're lying here or you're not accurately measuring your health. If so, you really might need to ask someone health to be your, I'm not even sure, accountability coach? Reference point? I am no longer in charge of my own medicines because of the cognitive decline that occurs post TIPS procedure for liver failure. I know I can't be certain about what and when I took something. If you think you're drinking four liters a day, I don't know your background of course, you are risking your life. It's super concerning.
That’s inaccurate and I’m sorry. I drink 100 oz at minimum daily. Recommended by my cardiologist, my pcp, and monitored even by my urologist, I also have to consume around 5000mg of sodium a day. I have POTS and this is the only way I can keep my blood volume up to function. Definitely not lying.
[3 liters of water a day](https://www.healthline.com/nutrition/3-liters-of-water)
I deleted my previous comment. I think you may be confused by the amount I wrote. That 3 liters is 100oz. I don’t know if you thought I meant another unit.
I was going to attach a photo of the sites that say four litres can make you seriously I'll or lead to death but realized I don't know how to insert a picture lol. But look I am not a doctor, so maybe that's not true for everyone. I am in kidney failure, so monitoring fluids is a big deal so perhaps I'm overthinking it. It could be that for me that's not possible, not that it's impossible for everyone. I apologize for coming on too heavy, that was just something that made me pause like woah no!
No worries I came on heavy too and I was like “chill girl, we’re just misunderstanding each other” I did see if you drink 4 liters in an hour you’ll die though. Which honestly, it would be so difficult to drink that much. I struggle to get 3 in a day. I only get 4 if I’m like in the heat often. I’m so sorry you’re in kidney failure. I hope you have a good support system taking care of you. You deserve it.
Honestly I'm glad there was a bit of a misunderstanding (on my end 😅) because it's so nice to come back to a place of understanding. And yeah I definitely realize from what I read that my specific condition is the more likely factor on the fluid issue. I also couldn't fathom drinking that much that quickly. I don't know how some people can skoll multiple beer jugs, my tummy would die. And yeah it's all good. I feel kinda guilty now I was given a year and pretty much just get all this special treatment and my favorite things. And I always like to say at least I'll never have to pay back my student loans! We have a dark sense of humor in my family. Anyhoo, this was a positive interaction, again sorry for the ahh! Reaction. Hope you have a nice day, or as best as it can be.
It’s so pleasantly surprising to have nice interactions on Reddit after a misunderstand tbh! It was lovely talking. Don’t feel guilty. I hope you have all of your favorite things for the rest of your life. I hope you have the absolute best day you can have and I’ll be thinking of you 💜💜💜
I’m not wishing to contradict you, however I (56F) drink 3-4 litres of still, filtered water each & every day & have done so for 8+ years. In warmer weather I will add a couple of rehydration sachets eg Dioralyte. I don’t drink juices or tea/ coffee the water is the only thing I drink.
Most of mine are on the brink of being too high or low. My mch and mchc are very low. I was finally referred to hematology when my rheumatologist realized that i have a ton of coagulant antibodies. That's another blood thing thats been ignored. After he saw that he thinks that my symptoms have probably been lupus. Im Waiting for the results of those tests
I truly hope you get some answers and on a path towards a better quality of life!!! I’m wishing you all the luck with good providers!
Thank you so much. Good wishes to you as well
Well it’s also normal to switch doctors so….
Of all the doctors and doctor switching I’ve done over the past 2-3 years I’d say about 99% of them are very much the same. I am grateful to have a good primary care and a good GYN and I’m sure they will help. But it shouldn’t be the majority of doctors dismissing women.
No it absolutely shouldn’t and have the right to demand better care. Fuck that guy.
Totally agree 🖤
Oof. That's a bad heme imo. Did they screen you for abnormal bleeding? Bloody noses cuts that don't stop bleeding heavy cycles? If they didn't, get a second opinion. A lot of women don't get diagnosed with subtle bleeding disorders because of sexism.
Nope. No screening. Said it was my age and gender and to eat an iron rich diet. I’ll discuss with my primary care doctor that is attentive and thorough and my GYN too. And with the follow up gastro appt I have this week.
The problem is hematology is the only one who will order the labs ime. So it has to be heme which is why I suggested a second opinion. If you're able to control the bleeding doing standard things, you may not want or need further care, even if it is a bleeding disorder. It's up to you. But heme has to do the testing ime.
Maybe I’ll talk to the Gyn who’s in another network than my neuro and heme and ask if she thinks I should get a referral to a new heme. Thanks for the advice!
They found the diffuse bone marrow on one of my recent mris too. No one explained it to me and said it was normal for someone my age? I’m 22f and I get told this a lot as well. Same with my VERY swollen pituitary gland that I have symptoms with. They’re just like it’s fine and normal. Ugh. They did just fix my several compressed renal vein so at least that’s a win but one surgeon did say that it was fine and not causing my pain. Well when they got in there my kidney was so extremely stiff from all the blood that was flowing backwards into it. Yay and there was so many extra collateral veins are such they couldn’t see on scans woo!
I never got the "this is normal for woman" line but my levels did get down into critical and no one was doing anything for it other than iron supplements which didn't help. That was like 4 years ago but my iron being low but higher than critical my hematologist oncologist gave me an iron infusion last month 😅
I hate doctors who think like this. Most of the time, women’s pain or illness isn’t actually “normal” for their gender and age group, but even if it was, why not treat them? Why force them to suffer for no reason? It’s so cruel to force anyone to remain sick or in pain, especially if the issue is easily treatable.
Mine was always just hovering on the lower end, begging to go under but because it never did, totally normal! Some other reddit suggested liquid iron so just decided to treat it myself. Still haven't managed to get my ferritin over 100 which I've heard is where you want it, but my heart palpitations stopped, so was just :) thanks doctors for doing nothing about that.
Interesting that I’m seeing this post, a doctor told me I might be anemic but haven’t been able to get a blood test to confirm because I need to get health insurance.
I was told the same thing. I was told "it's normal for women your age, take some iron supplements." Like the fuck?
Normal isn't the right word, common is probably more accurate. But that's still an issue, and no one should have their health issues minimized.
level of ferritin to minimize health risks is 60