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i would love to atart a thread for people to share a clear list of their symptoms of anemia/ iron defficiency to help others.
Like always, official medical info pages are very limited and generic as is often explanation from the doctor.
My symptoms have been:
-fatigue and exhaustion
- hair loss
- brittle peeling/ tearing nails
- vertical nail ridges
-Going into fight or flight when bending down to pick something up, getting up from sitting, going up stairs, lifting items etc.
-throbbing sound in ears when lying down
-super dry skin
-dry lips always
-nervous system feels in overdrive
-severe depression, crying episodes, hopelessness
-cold hands and feet
-subconcious TMJ/jaw clenching during period
-crushing fatigue and pain and weakness during first two days of period
1 like, 34 replies
I have had pretty much all the symptoms you mention. In addition, I am having terrible headaches, shortness of breath, and I have not been able to sleep well for months. It was only a few weeks ago I got my blood results that showed low ferritin (8), and I've only been on supplements for a little more than two weeks. I am relieved to see on this forum that it takes a long time to rebuild ferritin levels. Although I've had a couple days when I thought I was improving, overall I still feel terrible most of the time. And I think some symptoms (headaches, fatigue) are worsening even while other symptoms (sleep) seem to be slightly improving. Very frustrating.
I especially like how you describe "nervous system feels like it's in overdrive." That is absolutely correct. For the longest time I was describing it as anxiety, which leads health care professionals down the path of anti-depressant/anxiety medication. Since finding out about my low ferritin levels and discussing with my new health care provider (a PA who specializes in functional medicine), I have come to understand what I used to call "anxiety" in two ways: (a) my body is in over-drive--"fight or flight"--just trying to survive, and (b) I am short of breath most of the time, not because I'm anxious, but because my body is struggling to get enough oxygen.
Thank you for starting this thread. I would love to hear from others as well. I am finding that iron deficiency is poorly understood in mainstream medicine, but fortunately, some forward-thinking physicians are starting to have a better understanding. Hearing from other patients adds a lot of value to all the expert information you can find online.
Hi, I sympathize with you both, I'm 47 and I haven't felt well for about 2 plus years but put it down to the perimenopause. Last November I rang my gp as l can honestly say that I thought I was dying, I'd started my 6th week of couch to 5k and whilst out could run no further and felt lightheaded/dizzy and just awful. Fortunately she did a full blood count plus ferritin which at the time I'd never heard of, it came back with a level of 6 and apparently she said they like it to be at least 30!! I was then perscribed iron tablets and after 3 months have had my bloods redone, my ferritin has increased to 25. Whilst i am pleased i am also frustrated as i may not have all the symptoms that i had before which were bad dizziness, fatigue, brain fog, hair loss, nails never grew, breathlessness etc but i still don't feel right! I went for a brisk walk with a friend today and felt lightheaded, I'm wondering if i expected a quick fix!!!! I have got to stay on the iron for the foreseeable. I am due to have the mirena coil fitted at the beginning of March as my periods are so heavy and I have numerous fibroids. i just want to feel tip top, sure it will happen eventually. Hope you both get relief soon too!
Wow 3 months is a long time. I am just going on 3 weeks of being on supplements and already losing patience. Some days, like today, I feel worse than when I started. In particular, my headaches are getting more severe and won't respond to Tylenol or ibuprofen anymore. Other days, like yesterday, I do notice some improvement, but I never seem to have more than one good day in a row. I would love to hear from people who have made it through and really saw improvement on iron supplements.
I was exactly the same I even got to the point where I rang the gp again as I was so worried about how I felt, my headaches were bad too but I can assure you that they do improve with time. I still get symptoms but not as severe, some days are better than others. Make sure that you don't take your iron near when eating dairy foods or drinking tea or coffee, you should make sure at least 2 hours as it can affect the absorption. Good to take with vitamin c so a small glass of fresh (not from concentrate) orange juice! Time is the key and we'll get there!
Thank you! It means so much to hear from other people who have been through this. I will keep posting updates here and would love to hear from others as well. I just can't believe how long it takes. But I guess it makes sense--in my case this has been building for years, and should have been caught much sooner. So I shouldn't expect it to be fixed overnight. (I've also been having heavy periods for the last several years, which is a whole other story, but that's likely the cause of the iron deficiency, and if I had started supplementing sooner, it wouldn't have become this severe).
I'm sorry you are experiencing similar symptoms.
My ferritin was 30 and I'm symptomatic. I have read that symptoms can begin at 75. Have you considered talking to your provider about an iron infusion? You are very low and supplementation can take a long time. I have recently had an infusion but i have heard it can still take up to 9-12 weeks for your body to create new cells and haemaglobin with the iron.
Yes i am always hyperventilating and always thought it was because i was a 'mouth breather' or just a more stressed person. it is reassuring though as hopefully this will dissipate in time!!
If anyone else is reading this and relating, please share your symptoms as there is not much information about them, especially mental health symptoms.
I'm so sorry you have been unwell with this too!
Omg a 6! That's crazy!!
Apparently we can be symptomatic with ferritin 75 or below so don't always trust what the medical doctors say and don't stress if you are experiencing symptoms at level of 35.
Well done on raising it so much from such a low level in a short period of time!!
Have you suffered anxiety or depression also? i have had the odd panic attack also. Its the hardest part feeling like your body is so stressed 24/7!!
Yes I have asked two different doctors about an iron infusion and both have said I have to try the supplements for at least one month. I will get my blood tested March 2, and that will be one month on supplements so we'll see where I am then. Let me know how it goes--it is definitely something to consider.
I have another question for others on this forum: for me, my ferritin was very low (8), but most of my other CBC numbers were in normal range--hemaglobin 12.4 for instance. (MCHC was low: 31.6. Platelets high: 471). Is that similar to others' experiences, or did you have low CBC numbers as well? Interestingly, in looking back over my routine labwork from the last five years, there were a few occasions where I had low hemaglobin and the nurse made a note that I was "mildly anemic." Nobody ever bothered to let me know that, or I could have started supplementing before the ferritin got this low.
i could of written this, it could be perimenopause? x
could you describe what not sleeping good felt like to you because im having an issue with sleep
So happy to find this forum. I've been dealing with heavy prolonged period this year. Got me so stressed! My periods were always fine, im in my 40s now.I know low iron is a risk, but when my doctor told me i had extremely low levels of iron and hemoglobin levels, and might need a transfusion if levels dont go up, I almost had a breakdown. Been feeling terrible since then. More blood work in 2-3 months to check levels but im scared it wont go up. i also dont know how I'll cope at work when i start back as I'm always busy. Guess I need to hear it will be ok. Learned all this from an email from my doc, so didnt have anyone to talk things thru with!
ask your doctor to send you to hematology for an iron IV (infusion).
i just found out yesterday my ferritin is a 4! i was aware my hemoglobin was low but never had a ferritin reading. i started taking iron supplements two months ago which raised my hemoglobin from 7.4 to 9.2. i wonder what my ferritin level was back then! i DO have to be careful abt taking iron supplements every day tho as they cause terrible stomach cramping. does anyone else experience this? has adding red meat to your diet helped? i am trying to eat more (had previously been eating almost none). thank you so much for everyone's info! i had to go up three flights of stairs this week and felt very faint and 'weird' for about half an hour after. so crazy we can be heading toward this state for so many years, probably, due to heavy menstruation and fibroids (i have one large one) and no one in the medical field tells us to have our blood tested! crazy lack of education on this in the culture.
I was having fainting episodes and just all round feeling very ill with a ferritin of 7 ug/L. supplementation for three months got it to 17 ug/L, then 7 weeks later 28 ug/L. currently very symptomatic on my period (im 28 years old).
other symptoms i experience:
hot and cold,
dry, dull looking skin,
dark under eye circles,
extreme hairloss (though it is gettjng better slowly),
light headedness, which is my most debilitating symptom.
Your symptoms sound just like mines:
•TMJ (I just recently started feeling this)
•Fatigie during PD
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