1. < Blood Cancers & Disorders

New to anemia. What to expect?

Posted by John Taylor @jdtay87, Mar 14, 2023

I’m a 35 year old male. Bloodwork I had done in the hospital last month while being treated for foot pain showed that my red blood cell count, hemoglobin, and hematocrit were all low. Not low enough to cause symptoms, but low enough to be flagged.

My doctor also did bloodwork while testing me for gout, and it also showed low hemoglobin. My doctor’s plan was to wait four weeks and test my blood again, then start investigating. I still have about two weeks to go.

What worries me about my anemia is that I don’t think it is caused by an iron deficiency. The fact that I had gout, which is usually caused by foods that happen to be rich in iron, makes me think this. If my anemia isn’t caused by an iron deficiency, I think it’s likely to be indicative of a much larger problem, like maybe cancer. I don’t know, am I getting worried over nothing?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

magdalenahgross | @magdalenahgross | May 29, 2023
In reply to @debrajean674 "Well I am anemic I had two transfusions and then I take iron pills I'm down..." + (show)
@debrajean674

Well I am anemic I had two transfusions and then I take iron pills I'm down to two iron pills a day they kind of make you constipated I thought I had cancer too but your doctor would see in your blood work hopefully you have a good doctor if you don't take them it's not good but you feel better after you have to transfusions if you have any other questions just text me thanks bye Debbie

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Did they ever find the source?

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magdalenahgross | @magdalenahgross | May 29, 2023
In reply to @michey "My iron deficiency anemia was discovered in 2016. (I already had pernicious anemia which is another..." + (show)
@michey

My iron deficiency anemia was discovered in 2016. (I already had pernicious anemia which is another subject I will not address here.) The reason for my iron deficiency anemia was not found --- there were various speculations, e.g., heavy radiation for cancer in 1990, repeated urinary tract infections, exposure to chemical when a child, etc.
Iron deficiency anemia was found via blood tests were administered by my primary care doctor upon my complaints of extreme weakness, tiredness, rapid heart beat, and brain fog. The tests revealed dangerously low ferritin, red blood cells, hemoglobin, etc. so I was directed to immediately consult with a hematologist/oncologist which I did.
The hema/onc doc offered an immediate fix via an iron infusion and in the meantime, prescribed a daily iron pharmaceutical drug (Ferrex). (I declined getting an infusion for my own reasons; however, I have met others who did just fine with them.) My diet already included plenty of iron rich foods but I increased my red meat intake.
After one month of the prescribed iron supplement, I was on the road to normal levels and got the following blood tests every 6 weeks (initially) and then every few months plus I would meet with my hema/onc dr:
CBC/CMP (Complete Blood Count and Metabolic Profile)
Iron
Ferritin
Iron Bind Cap (TIBC)
UIBC
Iron Saturation
My body would not retain sufficient levels of iron and ferritin stores so I was forced to continue the iron pharmaceutical drug which played an absolute havoc with my already challenged digestive/intestinal system. Once I felt I was out of the woods and was no longer in serious trouble, I started independently experimenting with non-pharmaceutical iron supplements and tried unsucessfully to get tips from costly alternative doctors since my hematologist/oncologist had no knowledge of non-traditional/complementary med. It took me 2 years on my own to eventually find a over the counter iron supplement that continues today to work well for me today: NovaFerrum Dietary Supplement capsules [a polysaccharide iron complex, 50 mg] with water and on an empty stomach. (I found if I don't take the supplement, my blood values dip to below normal levels within one month.)
While this may never apply to you (my fingers are crossed), the regular administration of my blood tests listed above which I was getting every 6 months, revealed MGUS (Monocloncal Gammopathy of Undetermined Significance) in 2021. Because of the MGUS diagnosis, I now get other blood and urine tests that track the progression of MGUS plus I continue to get the ones related to iron which I've listed above. I will be getting my next battery of tests next month.
Everyone is different and there could be plenty of reasons for developing iron deficiency anemia but I do hope that my experience may benefit someone! 🙂

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This sounds like me. How did they find the MGUS and what do you do to manage it? Do you feel better? I can’t hold iron and needed a blood transfusion.

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kristsam88 | @kristsam88 | Jun 17, 2023

I have anemia and it's hard for me to walk far distances. I thought I was healthy. But I am not. What are ways I can be a better person to myself

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3 replies
kristsam88 | @kristsam88 | Jun 17, 2023
In reply to @kristsam88 "I have anemia and it's hard for me to walk far distances. I thought I was..." + (show)
@kristsam88

I have anemia and it's hard for me to walk far distances. I thought I was healthy. But I am not. What are ways I can be a better person to myself

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I think my blood disorder could turn into cancer? Is that possible?

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 17, 2023
In reply to @kristsam88 "I have anemia and it's hard for me to walk far distances. I thought I was..." + (show)
@kristsam88

I have anemia and it's hard for me to walk far distances. I thought I was healthy. But I am not. What are ways I can be a better person to myself

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Hello @kristsam88, Welcome to Connect. I think you have already started on your journey to help yourself improve your anemia by just reaching out to learn more about the condition and what helps. Here's some information that I think you might find helpful to get started.

--- Iron Deficiency Anemia: Coping, Support, and Living …: https://www.verywellhealth.com/iron-deficiency-anemia-coping-5189822.

There is another discussion where you can learn what others with anemia have shared here:
--- New to anemia. What to expect?: https://connect.mayoclinic.org/discussion/new-to-anemia-what-to-expect/

Did your doctor offer any suggestions or treatments?

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tyson1221 | @tyson1221 | Jun 19, 2023
In reply to @jdtay87 "For kicks, I thought I would post my numbers, since I just got access to the..." + (show)
@jdtay87

For kicks, I thought I would post my numbers, since I just got access to the second set today.

2-13-23 (Hospital)
RBC - 3.94 million
Hemoglobin - 11.0
Hematocrit - 33.4%

2-25-23 (Doctor’s Office)
RBC - 4.38 million
Hemoglobin - 12.3
Hematocrit - 36.7%

So my anemia improved quite a bit between the hospital and my doctor’s appointment. That second RBC is actually in normal range, but the hemoglobin and hematocrit are still slightly low. I’m a bit less worried now, I guess.

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Ya your numbers are fine unlike most other people here congrats

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Amanda Roe | @amandajro | Jul 3, 2023
In reply to @kristsam88 "I have anemia and it's hard for me to walk far distances. I thought I was..." + (show)
@kristsam88

I have anemia and it's hard for me to walk far distances. I thought I was healthy. But I am not. What are ways I can be a better person to myself

Jump to this post

Hello @kristsam88 and welcome to Mayo Clinic Connect. I am glad you are reaching out to connect with others who understand what you are going through.

You will notice I have moved your post, and its replies, into an existing discussion which you can now find here:
- New to anemia. What to expect?: https://connect.mayoclinic.org/discussion/new-to-anemia-what-to-expect/

I would like to bring in members @magdalenahgross @tyson1221 and @jdtay87 who may be able to share more with you.

When did you start to notice your symptoms?

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emg112253 | @emg112253 | Jul 4, 2023

You will need a bone marrow test by a hematologist. It doesn’t hurt now that they use Lidocaine. This will determine the cause of Anemia. Good Luck 🍀

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neuropathy, blood disorders, Judy | @neuropathy | Aug 26, 2023

My hematologist was thorough in giving me two bone marrow tests and ongoing blood tests. Although I know I am anemic, she told me I did not have low iron. Her only diagnosis was Polymyalgia Rheumatica. Like another writer here, I have been so dizzy and weak that I know there is a lot more to it. But I don't understand the technical blood test results online. I did have two infusions of irradiated blood and that did some good. Then the weakness/dizziness became unmanageable for me. In my research, I see a lot of symptoms that I recognize but that are not addressed, making me scared every day that I may have a stroke. My carotid artery is blocked and I have tinnitus also. I see that turbulence in blood flow pulsating sound created by this aberrant internal carotid artery in middle ear is a main cause of the tinnitus which is so intense and life changing. My dr. however simply said: do relaxation exercises. I feel she dropped the ball although I cannot of course diagnosis myself but I AM the source of these symptoms which remain largely ignored without adequate treatment. I do not think a rheumatologist is right for me, but could someone suggest the right kind of doctor to go to for help? Neurologist? ENT? another hematologist? She was so focused on finding something she missed since I dont have cancer that I had test after test after test with shot marks up and down both arms. She seems to have stopped testing and never found what she may have missed. So I am in limbo with this blood/dizziness/severe weakness and need to find help fast but with a new specialist with objectivity. Thank you all for the great insights.

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snakebite | @snakebite | Aug 27, 2023

I have no particular or direct advice other than to say that I have been Anemic for many years and it does lead to weakness and dizziness. I've used and been on a variety of different treatments that were directed at getting my Bone Marrow to produce good usable Blood cells. Some of them worked better than others. The one thing that I would suggest to you is to take what you read with a "Grain of Salt". There is a mountain of information available on the internet and particularly on many forums. Lots of "Arm-Chair" doctors out there. Be careful about what you buy into, it's easy to relate when you seem to have all the symptoms. Give you doctor a good and accurate report on your symptoms, but let him/her be the doctor.

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