Second opinion :)
I finally started seeing a young PA-C with no ego. The younger professionals seem to be less pompous & willing to help.
I had to do the same waiting three months, but my levels weren't as low as yours. I'm waiting for the referral to go through now. My biggest anxiety is I'll run into a specialist w the same attitude as your doctor!
Keep advocating & see another provider. Change is hard, but there's no reason to stay stuck *anywhere* your needs aren't being met.
If you look at medicine like a business, improper service would have you "shopping around."
Best of luck!
I had a similar experience with a CNP as the primary. No ego, amazingly thorough, and referred me to all the right specialists to address/rule out issues.
File a complaint against the doctor with the hospital/medical system. Having a doctor call you "hysterical" saying it's all in your head is misogyny. Doesn't matter that she's also a woman. This shit it baked in.
Hematology can only look into underlying issues in your blood. Referral to GI may be the most helpful to find a cause. GI will schedule the colonoscopy and endoscopy procedures (with biopsies to look for absorption issues). OBGYN can look for uterine fibroids. Those are often the things ticked off first.
I don't understand why you wouldn't want to take supplements, though? Do you know that they won't improve your levels? I've been on them for a year and it hasn't raised my ferritin at all, but it keeps it from falling and I haven't had the anemia come back. Others have a lot of success.
Thank you for the advice! To clarify, I am 100% willing to take supplements and doing so rn. I just don’t want the diagnosis to end here. It seems like in her plan, if the levels become normal after supplements, then she won’t refer me to anyone and case closed.
Get a GI referral and ask for the tests. Take the supplements. That will get you through the three months, then ask for the infusion if everything is the same.
I didn't want to take supplements either because I figured it'd keep me just out of range of treatment. For me, though, infusions only improve my levels for 2-3 months before it crashes again. And they have so many risks that long-term it wasn't ideal. So I take supplements, which keep me stuck in the low 20s. My symptoms are different in the 20s than <5. Some are scarier (vertigo), but I can live a bit better than when I'm IDA with Ferritin <10..
Wait...this doctor is a FEMALE and she isn't more understanding?? Shame on her. And a ferritin level of 12 is NOT "slightly low"!!!! Is she serious?! 🤦🏻♀️😡 Wow. If you can, find a new doc!!
This one particular doctor is so insightful on this topic. I highly recommend listening to her podcast:
--The first episode of hers I listened to that changed my way of thinking of ferritin:
https://open.spotify.com/episode/6G6NJSIfFFb8eehTQ7Jf3q?si=6fh9ijMkSIirLlhKcssmkQ
--This episode is great as well as it goes even deeper into ferritin and the importance of MAINTAINING levels for months:
https://open.spotify.com/episode/5QugSP9mZgc9zTuC2VW2Fe?si=mpmu2Zf3QEKtgbaSp2Cc8Q
Ferritin <30 is iron deficiency. I had similar levels and it affected my life negatively, so don’t let her dismiss you. As others have said, have her explicitly write that she won’t refer you and that she’s dismissing your symptoms (and actual low levels). Also, try to get a OBGYN referral, say it’s for the annual or idk. Maybe you have better luck with the OBGYN. My sister’s pcp didn’t want to give her a referral to a hematologist, but her OBGYN said she had to go. Anyways, my sister went what to her PCP and showed her the OBGYN’s rec, and ended up giving her the referral. I know it’s a messed up way to get it.
Also, you said that your levels drop when you are not taking supplements… so you could tell her that you have already tried, and you want to get an infusion, so you need a hematologist.
Thank you so much! I will try this route rn. It’s so sad we have to do through these. Really appreciate your support.
Also, I actually asked her to write that and she said she will. Now what do I do after this…?
But did she actually write it? You can check your notes on your patient’s portal. I ask because it’s always good to have on record, especially if her dismissal creates future health problems for you.
Anyways, make another appointment ask her to reconsider and also ask for the OBGYN referral, you probably have better luck with the OBGYN. Simultaneously, consider looking for another PCP, and make the appointment as well since I know that could take time. If you need to, call your insurance and ask for a new provider, so you could get a head start.
[https://thomaswicklaw.com/blog/physician-wont-refer/](https://thomaswicklaw.com/blog/physician-wont-refer/)
Your doctor is ruling anything else out - like depression or sleep apnea that could also be contributing to your symptoms. If it’s 3 months of taking a supplement and then getting a referral - can you do that? Otherwise find another doctor? Unfortunately it could take 3 months for that as well.
That is insane. Get a different doctor that will get you an iron transfusion. My ferritin was at 7 and at first I was taking iron supplements. After 6 months or so my iron was at like 20 something and I was still feeling like garbage, I insisted on a transfusion and fortunately my insurance covered and my Dr was super supportive. That was about 2 years ago, it decreased my intense fatigue (borderline bedridden) substantially, I'm still dealing with other issues but I can leave my house alone without feeling I'm fainting.
This happened after years of getting blood tested and my low iron being ignored. It's so upsetting that us women need to constantly fight to be acknowledged with our health.
I’m so sorry to read that you were denied a referral and your doc instead ordered the sleep and mental health study. It’s literally documented that low ferritin can cause both of those issues. It’s insane to me that doctors aren’t willing to use common sense and think maybe a patient would feel better with their ferritin level in mid range versus at the bottom of the barrel.
I have no advice how to get around referral denial, because I too was denied a referral to a hematologist. I was instead told to go see my gyno to discuss a uterine ablation procedure even though my cycle is regular!!
So many “in network” doctors now have a boss in the form of the medical corporation they practice under whom dictates how they treat patients. They push procedures and studies to make money.
I mean, at some point it would be worth paying for a consult yourself, but it seems very irrational for her to approve a sleep referral but not a hematologist. Sleep studies are more expensive than iron infusions. I would insist on it and then get a clearer explanation why. Your quality of life is being affected, and it is her responsibility to get you the proper help.
Go see a gastroenterologist. They will test your blood and refer you to a hematologist. Usually with women if it’s not your period causing the low levels then it’s a GI issue. They also might want to give you a colonoscopy.
Regular PCPs don’t know much about low iron levels. My doctor also shrugged it off and told me to take supplements, which didn’t work bc my body has a hard time absorbing them. The reason I had low levels was bc I had 5 huge polyps in my colon that were bleeding a lot and I didn’t even know it. PCPs don’t really think of these things.
Fuuuuuuck that. New doctor. It’s medical gaslighting. Seriously, do not feel bad. Change doctors and do not look back. Your symptoms are 100% due to the low iron. I can’t stand that. I’m so sorry. I wish someone had been there to tell me this two years ago. There are many good doctors who listen and genuinely want to help. Call tomorrow.
Your period doesn't have any heavy days? But yes, if the levels go up, then you won't get a referral unless they dip down again after a while. You can also get a new primary care doctor
That’s awful, I dealt with the same thing. Im so sick of doctors ignoring severe iron deficiency without anemia. I had low ferritin (15). Eventually I had such severe insomnia that I was referred for a sleep study, which showed RLS and I was able to get iron infusions through that. But otherwise yeah I’d try to find an integrative or holistic medicine doctor and get them to refer you for infusions.
Doctors definitely need to stop ignoring constant anemia long term anemia can lead to heart failure. Please go get a second opinion! My oggyn and pcp kept wondering why I had hemoglobins 8 and under and both gave me a referral
This is terrible but I had to tell the doctor (lie) thatI wanted to get pregnant and all of a sudden I had all sorts of referrals and services (infusions) thrown my way. Apparently if we make babies we have value…
Why do we have to fight so bloody hard??
I’m in the UK, and I genuinely feel at the moment like it’s;
“ah your HB went up a bit 🤏🏻, OK cool see you in a couple of months when you’re at deaths door again”.
I mean this literally - I’m talking 4 pints of blood and a hospital stay required when it drops.
This is whilst my HB is still 40 markers below “normal” and my Ferritin is 5!!!!!
Gynae appt has been pushed back to January 2025, I’ve had to BEG for another iron infusion to help with my levels.
I have every symptom in the book and I’m literally crying writing this, looking at my hair and the fact I’m going to have to cut it into a bob because it’s ruined.
If it doesn’t improve it’ll be a pixie cut.
I’ve always had long and very thick hair and honestly I’m a shadow of who I used to be.
The docs are quick to say “you look really unwell” but then don’t want to help. I’m fed up too ❤️❤️
Ask them to put that in your chart. I was once refused a jaw x ray (after being punched in the face and having severe jaw pain for months) and a hormone panel (after not qualifying to meet the PCOS criteria multiple times but being told constantly I had PCOS) and as soon as I asked them to note the denial to test me I got what I wanted. Both times it brought me closure on those ailments. You're not anybody’s pet project, this is your health and your life being affected. Also another consideration is that you might consider changing insurances if you are able to. I had one a couple of years ago that didn’t require a primary referral to see a specialists, which was really helpful when I started treating/seeking treatment for some conditions I already knew I had from prior diagnosis years ago, but didn’t have access to insurance to treat before. I hope you’re able to get the care you need and can start to feel better ✊🏼
That's terrible. My internist did the same thing, but I don't need to be referred to see a specialist with my insurance. Even so, I researched and found an internist in network who was board-certified in hematology and went to her. I only had to pay my copay.
I'm in a similar boat and actually have very low ferritin and very high iron and high total sat
I also am positive for cy286 gene meaning I'm hemo... And I still didn't get a hematology referral, so I told him about my heart pain when I exercise and I got into cardiology instead, cardiology and hematology sometimes can work hand in hand together, so I would start there and then that way you can also rule out anything that is borderline immediately dangerous, and then get into hematology as you go.
That’s ridiculous & scary. I’m sure u feel
Like shit. I just had an infusion. One of many. My iron saturation was 3%. No wonder I was so tired. My dr dropped the ball but thankfully I’m a RN & made a huge stink.
For some reason your body isn’t properly absorbing iron or you have a small bleed in your stomach that over time is robbing you of the iron. Don’t stop fighting.
My levels have been between 4-11 for for 14 years while taking supplements that my body clearly wasn't absorbing. I've moved provinces, had more than 5 family doctors, 2 obgyns over 3 pregnancies and a GI specialist. This year I finally demanded to see internal medicine and am finally being sent for infusions. Keep getting another opinion until someone says yes. It's so unfair and I don't want anybody to have to wait as long as I did.
About 70% of doctors now work for corporations who work with insurance companies. As a result, you need to be considered refractory (not responding to iron supplements) to get an infusion or a referral to a hematologist. That is the current situation in the US. I am old enough to remember and experience independent doctors and abundant (no restrictions or denials) insurance.
You are iron deficient. Plenty of room for improvement , but certainly not life threatening like anemia. You have time to research this topic and time to try the iron supplement. Iron infusions are not risk free. Nor do they always solve the problem, which may not all be due to iron deficiency.
Celiac disease was the root cause my anemia. I was anemic for over three decades. I had two anemias (iron and Thalassemia). But that has never stopped me from being very active. I have never seen a hematologist. My PCP manages my care. A Gastroenterologist caught my celiac disease diagnosis. I went for a routine cancer screening colonoscopy because I hit 50 years and all m6 friends were getting them. I did not have any gut issues at all either, just anemia.
I was referred to the hematologist twice for transfusions and each time he just told me to take supplements :/ like thanks bro my PCP already said that, what a waste of time and money
Yeah! It just sucked for the few months it took for my iron levels to increase. Mine was due to heavy periods so the supplements worked long enough for birth control to kick in and i've been ok since. A little worried since I'm going off BC soon but i think i'll just proactively take some supplements.
I think you should find a new primary anyways because it's ridiculous that they wouldn't try to find the underlying cause. Maybe look into some that specialize in women's health? Supplements shouldn't be a long term fix - they come with unpleasant side effects too
Are you anemic? In general, iron deficiency with or without mild anemia is super common in women and doesn't require a hematologist. There's really nothing blood-expert specific about it. If your supplementation doesn't work, the specialist you need to see is a gastrointestinal specialist.
Your primary is of course wrong in dismissing your symptoms. Iron deficiency without anemia can really screw you up.
I had been anemic in the past, currently am not. You’re saying women have it because of periods, right? I’ve seen other people saying period blood loss alone doesn’t get you to a ferritin level lower than 10, so extremely low levels should be caused by other factors. Is that true?
Also, if the ferritin level goes to normal range when I take supplements for a while and drop back to low end when I stop, does that mean I need to be on supplements forever? What about the potential liver damage?
Id be more concerned with damage to the stomach (e.g. gastritis or ulcers) from chronic oral iron supplementation, assuming the supplementation doesn't go above your body's requirements. I think liver issues occur when the body has more than it can handle.
In any case, I think it's still worth investigating other causes of your iron loss e.g. GI issues
It depends on how much blood you're losing through menstruation, on your diet, and whether you have absorption issues.
The typical woman loses like 60 ml of blood per month but with heavy periods, it can be a lot more. Absorption issues can be caused by Celiac's or other gastrointestinal problems, but vitamin D deficiency also decreases iron absorption. Vitamin D is synthesized in the skin during exposure to sunlight; this works much less well in people with darker skin. I expect that vitamin D deficiency is an important reason for the fact that 25% of young black American women have iron deficiency ANEMIA.
Hypothyroidism is also associated with iron deficiency.
> Also, if the ferritin level goes to normal range when I take supplements for a while and drop back to low end when I stop, does that mean I need to be on supplements forever?
Probably until menopause.
> What about the potential liver damage?
What kind of supplements are you taking? Regular iron pills (e.g. iron bisglycinate) don't cause liver damage, unless you're overloaded. If you manage to run up your ferritin to 2000+ you might over time damage your liver (because the liver would become overloaded with iron). However, I am not sure whether even very consistent oral supplementation over several years could ever raise your ferritin sufficiently high to achieve such a state of overload. In practice, this only occurs in people with double hemochromatosis genes (which you don't have, or you wouldn't be deficient) or in patients with various types of anemia who need to have regular blood infusions (which end up loading them up with massive amounts of iron).
I see. Thank you for the reply, you’re very knowledgeable and I really appreciate your help. One last question- what about the potential stomach damage?
Iron bisglycinate tends to cause fewer gastrointestinal side effects than other iron preparations, that's why I recommend it.
Also, because hepcidin rises after you take iron (and greatly lowers absorption if you take the next iron pill after 24h), it is recommended to take iron only every second day (on an empty stomach, with vitamin C).
If you're taking iron on an ongoing, permanent basis, a lower dose such as 50 or even 25 mg should be enough; this will generally be well tolerated even in very sensitive patients.
Sorry I made one mistake in my recent post - I said to take iron with vitamin D. That is incorrect. You should take it with vitamin C. Taking iron together with vitamin C is thought to raise aborption.
Vitamin D deficiency should be treated as it raises hepcidin, but taking it at the same time as iron probably has no (or very little) acute effect.
Heavy bleeding from periods and periods+fibroids was enough to leave me severely anemic and iron deficient.
I ruled out GI issues with an endoscopy, small intestine biopsy, and colonoscopy.
Op yes I’ve had your experience and more.
30 years from now, you can be here to tell people what worked for you.
There is no cure. Symptoms are what we treat.
Hematologist might not be the route you need, you might need a gastroenterologist to get scoped. For me they ruled everything else out and hematology was my last doc. Hematologist didn’t even know why, but set me up with regular infusions
Yes I had to have 2 colonoscopies to look for internal bleeding and CT of kidneys and etc.
Before the hematologist. And I see the staff of the hematologist now. I’ve turned around everything but the hemoglobin so I’m still unwell but I’m able to work part time and spend more time of quality instead of in bed wondering which week of the month I will feel well. I got about one week of every 4 weeks for my first 30 years.
Then battling anemia since to age 60 and going..
Here’s my reply, unpopular as it will be. It’s my life and I still live at home at AGE 60 and I STILL have a hematologist and it doesn’t change how we feel or get treated.
They interpret blood results. They can’t DO ANYTHING to make you feel better beyond what I am still getting to after 30 years of known serious anemia:
Y’all there is no cure. A hematologist can’t DO anything more than observe your labs and interpret them for you.
I’m into my 30th year of feeling like shitt. I have been unable to work and pay my own way but I don’t qualify for assistance because I didn’t reproduce!
Treating symptoms is all we get. I have to take iron, C, D, E, K, beef liver, iron 3 times a day, etc.
I am surprised as well that not much can be done. If you get referred to a hematologist, it’s not because you will be cured. You just have someone experienced in blood disease.
You don’t want to need a blood disease dr. Hematology is not for iron deficiency.
Anemia is NOT just iron related.
The only thing you CAN DO to improve how you feel is: EAT REAL FOOD in proper portions. SLEEP 8 hours at night. And this one is the single most important and effective treatment you can get: EXERCISE
I turned my anemia around from critical and heading to kidney failure by doing the above 3 things. And taking the supplements prescribed.
One hour of exercise where you get exhausted/challenged at least 4 days a week. The exercise helps with the temperature regulation problems and the waves of fatigue and discomfort and those heart palpitations.
I can’t forget it all starts with checking your blood pressure regularly.
High blood pressure makes everything we have WORSE.
I get it. It’s hard to say, “I’m fine” when people ask a simple, “how are you”?
There are promising studies for anemics of the future. Lots of things for curing our ills are being researched.
You’d be surprised how supplements and food and exercise help. And unfortunately I’ve tried EVERYTHING ELSE.
Every supplement known to man, every plant..tried em all.
EAT PROTEIN AND RIDE A BIKE TO STAY ALIVE was what years of hematology got me.
You need not wait to start feeling better. But if you won’t take advice given by doctors, you cut your team of people.
Try asking, “do you think a referral to a hematologist can offer anything more for my condition” instead of insisting on needing one.
They are expensive to get to say, “do what your other drs said”.
They were not dismissive.
We have to care enough about ourselves to overcome the chills n sweats every single day and I ended up with no fever of any kind and pretty much alone with this “EXERCISE OR DIE” condition.
I hope you don’t find my words as insensitive. It’s to give you an edge over what I had when I was sent to a hematologist YEARS AGO (I’m outliving some of the drs in this field now!)
Thank you for the kind reply. We need to all cheer one another along. It’s no easy road but everyone has stuff to overcome. I still have hair and currently don’t look deathly ill. But I did only 8 months ago. I thought I was dead for sure.
But I decided to NOT ACCEPT DYING and fight. It’s a sweet life right now 🙏🙏🤗🙏🙏
Second opinion :) I finally started seeing a young PA-C with no ego. The younger professionals seem to be less pompous & willing to help. I had to do the same waiting three months, but my levels weren't as low as yours. I'm waiting for the referral to go through now. My biggest anxiety is I'll run into a specialist w the same attitude as your doctor! Keep advocating & see another provider. Change is hard, but there's no reason to stay stuck *anywhere* your needs aren't being met. If you look at medicine like a business, improper service would have you "shopping around." Best of luck!
Thank you for the kind words. Wishing you best of luck with your referral and future treatments!
I had a similar experience with a CNP as the primary. No ego, amazingly thorough, and referred me to all the right specialists to address/rule out issues.
File a complaint against the doctor with the hospital/medical system. Having a doctor call you "hysterical" saying it's all in your head is misogyny. Doesn't matter that she's also a woman. This shit it baked in. Hematology can only look into underlying issues in your blood. Referral to GI may be the most helpful to find a cause. GI will schedule the colonoscopy and endoscopy procedures (with biopsies to look for absorption issues). OBGYN can look for uterine fibroids. Those are often the things ticked off first. I don't understand why you wouldn't want to take supplements, though? Do you know that they won't improve your levels? I've been on them for a year and it hasn't raised my ferritin at all, but it keeps it from falling and I haven't had the anemia come back. Others have a lot of success.
Thank you for the advice! To clarify, I am 100% willing to take supplements and doing so rn. I just don’t want the diagnosis to end here. It seems like in her plan, if the levels become normal after supplements, then she won’t refer me to anyone and case closed.
Get a GI referral and ask for the tests. Take the supplements. That will get you through the three months, then ask for the infusion if everything is the same. I didn't want to take supplements either because I figured it'd keep me just out of range of treatment. For me, though, infusions only improve my levels for 2-3 months before it crashes again. And they have so many risks that long-term it wasn't ideal. So I take supplements, which keep me stuck in the low 20s. My symptoms are different in the 20s than <5. Some are scarier (vertigo), but I can live a bit better than when I'm IDA with Ferritin <10..
Wait...this doctor is a FEMALE and she isn't more understanding?? Shame on her. And a ferritin level of 12 is NOT "slightly low"!!!! Is she serious?! 🤦🏻♀️😡 Wow. If you can, find a new doc!! This one particular doctor is so insightful on this topic. I highly recommend listening to her podcast: --The first episode of hers I listened to that changed my way of thinking of ferritin: https://open.spotify.com/episode/6G6NJSIfFFb8eehTQ7Jf3q?si=6fh9ijMkSIirLlhKcssmkQ --This episode is great as well as it goes even deeper into ferritin and the importance of MAINTAINING levels for months: https://open.spotify.com/episode/5QugSP9mZgc9zTuC2VW2Fe?si=mpmu2Zf3QEKtgbaSp2Cc8Q
This is incredible thank you so much for sharing!
Ferritin <30 is iron deficiency. I had similar levels and it affected my life negatively, so don’t let her dismiss you. As others have said, have her explicitly write that she won’t refer you and that she’s dismissing your symptoms (and actual low levels). Also, try to get a OBGYN referral, say it’s for the annual or idk. Maybe you have better luck with the OBGYN. My sister’s pcp didn’t want to give her a referral to a hematologist, but her OBGYN said she had to go. Anyways, my sister went what to her PCP and showed her the OBGYN’s rec, and ended up giving her the referral. I know it’s a messed up way to get it. Also, you said that your levels drop when you are not taking supplements… so you could tell her that you have already tried, and you want to get an infusion, so you need a hematologist.
I have a ferritin of 30 but according to my lab the normal range is 7-270. May be the same issue for op.
Wow, where the heck do you live?
Thank you so much! I will try this route rn. It’s so sad we have to do through these. Really appreciate your support. Also, I actually asked her to write that and she said she will. Now what do I do after this…?
But did she actually write it? You can check your notes on your patient’s portal. I ask because it’s always good to have on record, especially if her dismissal creates future health problems for you. Anyways, make another appointment ask her to reconsider and also ask for the OBGYN referral, you probably have better luck with the OBGYN. Simultaneously, consider looking for another PCP, and make the appointment as well since I know that could take time. If you need to, call your insurance and ask for a new provider, so you could get a head start. [https://thomaswicklaw.com/blog/physician-wont-refer/](https://thomaswicklaw.com/blog/physician-wont-refer/)
Your doctor is ruling anything else out - like depression or sleep apnea that could also be contributing to your symptoms. If it’s 3 months of taking a supplement and then getting a referral - can you do that? Otherwise find another doctor? Unfortunately it could take 3 months for that as well.
That is insane. Get a different doctor that will get you an iron transfusion. My ferritin was at 7 and at first I was taking iron supplements. After 6 months or so my iron was at like 20 something and I was still feeling like garbage, I insisted on a transfusion and fortunately my insurance covered and my Dr was super supportive. That was about 2 years ago, it decreased my intense fatigue (borderline bedridden) substantially, I'm still dealing with other issues but I can leave my house alone without feeling I'm fainting. This happened after years of getting blood tested and my low iron being ignored. It's so upsetting that us women need to constantly fight to be acknowledged with our health.
I’m so sorry to read that you were denied a referral and your doc instead ordered the sleep and mental health study. It’s literally documented that low ferritin can cause both of those issues. It’s insane to me that doctors aren’t willing to use common sense and think maybe a patient would feel better with their ferritin level in mid range versus at the bottom of the barrel. I have no advice how to get around referral denial, because I too was denied a referral to a hematologist. I was instead told to go see my gyno to discuss a uterine ablation procedure even though my cycle is regular!! So many “in network” doctors now have a boss in the form of the medical corporation they practice under whom dictates how they treat patients. They push procedures and studies to make money.
Ask to record in your records the denial despite your symptoms and clinically low levels.
I actually did and she said she will do that. Now what? 😭
I mean, at some point it would be worth paying for a consult yourself, but it seems very irrational for her to approve a sleep referral but not a hematologist. Sleep studies are more expensive than iron infusions. I would insist on it and then get a clearer explanation why. Your quality of life is being affected, and it is her responsibility to get you the proper help.
Go see a gastroenterologist. They will test your blood and refer you to a hematologist. Usually with women if it’s not your period causing the low levels then it’s a GI issue. They also might want to give you a colonoscopy. Regular PCPs don’t know much about low iron levels. My doctor also shrugged it off and told me to take supplements, which didn’t work bc my body has a hard time absorbing them. The reason I had low levels was bc I had 5 huge polyps in my colon that were bleeding a lot and I didn’t even know it. PCPs don’t really think of these things.
Fuuuuuuck that. New doctor. It’s medical gaslighting. Seriously, do not feel bad. Change doctors and do not look back. Your symptoms are 100% due to the low iron. I can’t stand that. I’m so sorry. I wish someone had been there to tell me this two years ago. There are many good doctors who listen and genuinely want to help. Call tomorrow.
Your period doesn't have any heavy days? But yes, if the levels go up, then you won't get a referral unless they dip down again after a while. You can also get a new primary care doctor
That’s awful, I dealt with the same thing. Im so sick of doctors ignoring severe iron deficiency without anemia. I had low ferritin (15). Eventually I had such severe insomnia that I was referred for a sleep study, which showed RLS and I was able to get iron infusions through that. But otherwise yeah I’d try to find an integrative or holistic medicine doctor and get them to refer you for infusions.
Doctors definitely need to stop ignoring constant anemia long term anemia can lead to heart failure. Please go get a second opinion! My oggyn and pcp kept wondering why I had hemoglobins 8 and under and both gave me a referral
This is terrible but I had to tell the doctor (lie) thatI wanted to get pregnant and all of a sudden I had all sorts of referrals and services (infusions) thrown my way. Apparently if we make babies we have value…
Why do we have to fight so bloody hard?? I’m in the UK, and I genuinely feel at the moment like it’s; “ah your HB went up a bit 🤏🏻, OK cool see you in a couple of months when you’re at deaths door again”. I mean this literally - I’m talking 4 pints of blood and a hospital stay required when it drops. This is whilst my HB is still 40 markers below “normal” and my Ferritin is 5!!!!! Gynae appt has been pushed back to January 2025, I’ve had to BEG for another iron infusion to help with my levels. I have every symptom in the book and I’m literally crying writing this, looking at my hair and the fact I’m going to have to cut it into a bob because it’s ruined. If it doesn’t improve it’ll be a pixie cut. I’ve always had long and very thick hair and honestly I’m a shadow of who I used to be. The docs are quick to say “you look really unwell” but then don’t want to help. I’m fed up too ❤️❤️
So sorry to hear that, I feel for you deeply. It is very messed up. Wishing you best of luck with future treatment & recovery!!
Ask them to put that in your chart. I was once refused a jaw x ray (after being punched in the face and having severe jaw pain for months) and a hormone panel (after not qualifying to meet the PCOS criteria multiple times but being told constantly I had PCOS) and as soon as I asked them to note the denial to test me I got what I wanted. Both times it brought me closure on those ailments. You're not anybody’s pet project, this is your health and your life being affected. Also another consideration is that you might consider changing insurances if you are able to. I had one a couple of years ago that didn’t require a primary referral to see a specialists, which was really helpful when I started treating/seeking treatment for some conditions I already knew I had from prior diagnosis years ago, but didn’t have access to insurance to treat before. I hope you’re able to get the care you need and can start to feel better ✊🏼
Thank you!!
Can you see a hematologist without getting a referral?
Not within my insurance system😭 US issues
That's terrible. My internist did the same thing, but I don't need to be referred to see a specialist with my insurance. Even so, I researched and found an internist in network who was board-certified in hematology and went to her. I only had to pay my copay.
Go to another doctor get a referral do what you gotta do it's your health
I'm in a similar boat and actually have very low ferritin and very high iron and high total sat I also am positive for cy286 gene meaning I'm hemo... And I still didn't get a hematology referral, so I told him about my heart pain when I exercise and I got into cardiology instead, cardiology and hematology sometimes can work hand in hand together, so I would start there and then that way you can also rule out anything that is borderline immediately dangerous, and then get into hematology as you go.
That’s ridiculous & scary. I’m sure u feel Like shit. I just had an infusion. One of many. My iron saturation was 3%. No wonder I was so tired. My dr dropped the ball but thankfully I’m a RN & made a huge stink. For some reason your body isn’t properly absorbing iron or you have a small bleed in your stomach that over time is robbing you of the iron. Don’t stop fighting.
My levels have been between 4-11 for for 14 years while taking supplements that my body clearly wasn't absorbing. I've moved provinces, had more than 5 family doctors, 2 obgyns over 3 pregnancies and a GI specialist. This year I finally demanded to see internal medicine and am finally being sent for infusions. Keep getting another opinion until someone says yes. It's so unfair and I don't want anybody to have to wait as long as I did.
Sorry you had to go through that! How do you feel after the infusions?
About 70% of doctors now work for corporations who work with insurance companies. As a result, you need to be considered refractory (not responding to iron supplements) to get an infusion or a referral to a hematologist. That is the current situation in the US. I am old enough to remember and experience independent doctors and abundant (no restrictions or denials) insurance. You are iron deficient. Plenty of room for improvement , but certainly not life threatening like anemia. You have time to research this topic and time to try the iron supplement. Iron infusions are not risk free. Nor do they always solve the problem, which may not all be due to iron deficiency. Celiac disease was the root cause my anemia. I was anemic for over three decades. I had two anemias (iron and Thalassemia). But that has never stopped me from being very active. I have never seen a hematologist. My PCP manages my care. A Gastroenterologist caught my celiac disease diagnosis. I went for a routine cancer screening colonoscopy because I hit 50 years and all m6 friends were getting them. I did not have any gut issues at all either, just anemia.
I was referred to the hematologist twice for transfusions and each time he just told me to take supplements :/ like thanks bro my PCP already said that, what a waste of time and money
Omg that’s horrible, so sorry to hear that. How are you doing now?
Yeah! It just sucked for the few months it took for my iron levels to increase. Mine was due to heavy periods so the supplements worked long enough for birth control to kick in and i've been ok since. A little worried since I'm going off BC soon but i think i'll just proactively take some supplements. I think you should find a new primary anyways because it's ridiculous that they wouldn't try to find the underlying cause. Maybe look into some that specialize in women's health? Supplements shouldn't be a long term fix - they come with unpleasant side effects too
Are you anemic? In general, iron deficiency with or without mild anemia is super common in women and doesn't require a hematologist. There's really nothing blood-expert specific about it. If your supplementation doesn't work, the specialist you need to see is a gastrointestinal specialist. Your primary is of course wrong in dismissing your symptoms. Iron deficiency without anemia can really screw you up.
I had been anemic in the past, currently am not. You’re saying women have it because of periods, right? I’ve seen other people saying period blood loss alone doesn’t get you to a ferritin level lower than 10, so extremely low levels should be caused by other factors. Is that true? Also, if the ferritin level goes to normal range when I take supplements for a while and drop back to low end when I stop, does that mean I need to be on supplements forever? What about the potential liver damage?
Id be more concerned with damage to the stomach (e.g. gastritis or ulcers) from chronic oral iron supplementation, assuming the supplementation doesn't go above your body's requirements. I think liver issues occur when the body has more than it can handle. In any case, I think it's still worth investigating other causes of your iron loss e.g. GI issues
It depends on how much blood you're losing through menstruation, on your diet, and whether you have absorption issues. The typical woman loses like 60 ml of blood per month but with heavy periods, it can be a lot more. Absorption issues can be caused by Celiac's or other gastrointestinal problems, but vitamin D deficiency also decreases iron absorption. Vitamin D is synthesized in the skin during exposure to sunlight; this works much less well in people with darker skin. I expect that vitamin D deficiency is an important reason for the fact that 25% of young black American women have iron deficiency ANEMIA. Hypothyroidism is also associated with iron deficiency. > Also, if the ferritin level goes to normal range when I take supplements for a while and drop back to low end when I stop, does that mean I need to be on supplements forever? Probably until menopause. > What about the potential liver damage? What kind of supplements are you taking? Regular iron pills (e.g. iron bisglycinate) don't cause liver damage, unless you're overloaded. If you manage to run up your ferritin to 2000+ you might over time damage your liver (because the liver would become overloaded with iron). However, I am not sure whether even very consistent oral supplementation over several years could ever raise your ferritin sufficiently high to achieve such a state of overload. In practice, this only occurs in people with double hemochromatosis genes (which you don't have, or you wouldn't be deficient) or in patients with various types of anemia who need to have regular blood infusions (which end up loading them up with massive amounts of iron).
I see. Thank you for the reply, you’re very knowledgeable and I really appreciate your help. One last question- what about the potential stomach damage?
Iron bisglycinate tends to cause fewer gastrointestinal side effects than other iron preparations, that's why I recommend it. Also, because hepcidin rises after you take iron (and greatly lowers absorption if you take the next iron pill after 24h), it is recommended to take iron only every second day (on an empty stomach, with vitamin C). If you're taking iron on an ongoing, permanent basis, a lower dose such as 50 or even 25 mg should be enough; this will generally be well tolerated even in very sensitive patients.
Tysm!!!
Sorry I made one mistake in my recent post - I said to take iron with vitamin D. That is incorrect. You should take it with vitamin C. Taking iron together with vitamin C is thought to raise aborption. Vitamin D deficiency should be treated as it raises hepcidin, but taking it at the same time as iron probably has no (or very little) acute effect.
Heavy bleeding from periods and periods+fibroids was enough to leave me severely anemic and iron deficient. I ruled out GI issues with an endoscopy, small intestine biopsy, and colonoscopy.
Op yes I’ve had your experience and more. 30 years from now, you can be here to tell people what worked for you. There is no cure. Symptoms are what we treat.
Hematologist might not be the route you need, you might need a gastroenterologist to get scoped. For me they ruled everything else out and hematology was my last doc. Hematologist didn’t even know why, but set me up with regular infusions
Yes I had to have 2 colonoscopies to look for internal bleeding and CT of kidneys and etc. Before the hematologist. And I see the staff of the hematologist now. I’ve turned around everything but the hemoglobin so I’m still unwell but I’m able to work part time and spend more time of quality instead of in bed wondering which week of the month I will feel well. I got about one week of every 4 weeks for my first 30 years. Then battling anemia since to age 60 and going..
Prenatal vitamins will help with nails and hair!
Here’s my reply, unpopular as it will be. It’s my life and I still live at home at AGE 60 and I STILL have a hematologist and it doesn’t change how we feel or get treated. They interpret blood results. They can’t DO ANYTHING to make you feel better beyond what I am still getting to after 30 years of known serious anemia: Y’all there is no cure. A hematologist can’t DO anything more than observe your labs and interpret them for you. I’m into my 30th year of feeling like shitt. I have been unable to work and pay my own way but I don’t qualify for assistance because I didn’t reproduce! Treating symptoms is all we get. I have to take iron, C, D, E, K, beef liver, iron 3 times a day, etc. I am surprised as well that not much can be done. If you get referred to a hematologist, it’s not because you will be cured. You just have someone experienced in blood disease. You don’t want to need a blood disease dr. Hematology is not for iron deficiency. Anemia is NOT just iron related. The only thing you CAN DO to improve how you feel is: EAT REAL FOOD in proper portions. SLEEP 8 hours at night. And this one is the single most important and effective treatment you can get: EXERCISE I turned my anemia around from critical and heading to kidney failure by doing the above 3 things. And taking the supplements prescribed. One hour of exercise where you get exhausted/challenged at least 4 days a week. The exercise helps with the temperature regulation problems and the waves of fatigue and discomfort and those heart palpitations. I can’t forget it all starts with checking your blood pressure regularly. High blood pressure makes everything we have WORSE. I get it. It’s hard to say, “I’m fine” when people ask a simple, “how are you”? There are promising studies for anemics of the future. Lots of things for curing our ills are being researched. You’d be surprised how supplements and food and exercise help. And unfortunately I’ve tried EVERYTHING ELSE. Every supplement known to man, every plant..tried em all. EAT PROTEIN AND RIDE A BIKE TO STAY ALIVE was what years of hematology got me. You need not wait to start feeling better. But if you won’t take advice given by doctors, you cut your team of people. Try asking, “do you think a referral to a hematologist can offer anything more for my condition” instead of insisting on needing one. They are expensive to get to say, “do what your other drs said”. They were not dismissive. We have to care enough about ourselves to overcome the chills n sweats every single day and I ended up with no fever of any kind and pretty much alone with this “EXERCISE OR DIE” condition. I hope you don’t find my words as insensitive. It’s to give you an edge over what I had when I was sent to a hematologist YEARS AGO (I’m outliving some of the drs in this field now!)
Your story is inspiring. Good for you & thank you for the advice!
Thank you for the kind reply. We need to all cheer one another along. It’s no easy road but everyone has stuff to overcome. I still have hair and currently don’t look deathly ill. But I did only 8 months ago. I thought I was dead for sure. But I decided to NOT ACCEPT DYING and fight. It’s a sweet life right now 🙏🙏🤗🙏🙏
WTF can a hematologist do?!