Polycythaemia Rubra Vera And Iron Deficiency
Feb 27, 2016
i was diagnosed may 2015 with PV and thrombocytosis. I had 10 straight weeks of venesection and now 2 monthly. My iron levels have become very low and I am struggling to have enough energy to do what I need to do. I know I cannot have iron supplements otherwise I will need more blood letting. Does anyone know a solution to this problem?
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I was diagnosed 3 years ago at the age of 20. I was in total shock.At that point I was blacking out 3-5 times a day, constantly dizzy and struggling with the pain in my spleen.Along with the pv my haemotologist told me I am iron deficiant and cannot take iron tablets as it will make my haemoglobin shoot through the roof and risk me having a stroke or heart attack.so now I'm constantly tired and weak. I am just on 2 aspirin a day as doctor was worried about putting me on other medication as I'm quite young and is scared about the side effects on me (as if I'm not terrified enough).now my spleen has tripled in size and is a constant struggle to do daily things with my toddler, I'm starting to feel like I should just get it removed.has anyone had this done? And how did it effect you after the operation and then in daily life?
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Sore finger joints and a feeling of numbness in one middle finger on right hand. It is really uncomfortable and this finger is lower in temperature than the other fingers. It's keeping me awake at night and doctor doesn't know what to make of it. Anyone run across this?
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Since my symptoms started over two years ago (I was 22), I have lost 70% of my hair. My iron status at the onset of symptoms:
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Hemoglobin 13.5 (11.7-15.5)
Hematocrit 39.3% (25-40)
Iron, total 160 (4-175)
Ferritin 18 (10-154)
After supplementing with 150mg of elemental iron for 6 months (per a dermatologist that diagnosed me with telogen effluvium and advised that I increase my ferritin to 70-80 to stop hair loss):
Hemoglobin 13.1 (11.1-15.9)
Hematocrit 39.6 (34-46.6)
Iron, total 103 (35-155)
Ferritin 62 (13-150)
Reticulocyte count 0.6 (06-2.5)
After supplementing with 100mg of elemental iron for about a year after that:
Hemoglobin 13.9 (11.1-15.9)
Hematocrit 42.0 (34.0-46.6)
Iron, total 82 (35-155)
Ferritin 59 (15-150)
Iron saturation 28% (15-55)
TIBC 291 (250-450)
Reticulocyte count 0.4 (0.6-2.6)
I stopped taking iron supplements because I was not getting better, and because I had a few doctors tell me that I should not be on iron supplements because my hemoglobin, hematocrit, MCV, and RBCs were in the normal range. So I stopped for 3 weeks. Yesterday, I had a ferritin test done with a result of 87. This makes absolutely no sense considering I have not taken an iron supplement.
A physician I saw theorized that I could possibly have anemia of chronic disease, due to a low reticulocyte count, low TIBC and normal MCV. But that doesn't make sense to me either because although my ferritin did increase for some strange reason, it was on the low side before I started supplementing. And, my RBC, hemoglobin, and hematocrit have always been in range, and do not vary much despite supplementation.
I'm nervous that I shouldn't be supplementing with iron. In addition, my TSH (3.3), and midrange FT3 and FT4 have not changed despite supplementation--one physician theorized that maybe if I increase my ferritin levels, my thyroid levels will get better and I will stop losing my hair. Also, when I went on Naturethroid (went up to 2 grains over 6 months), my TSH decreased, but my FT3 and FT4 did as well--I felt awful.
Hb 3.7 iron deficiency anaemia
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After noticing a recent decrease in my athletic performance, I sent a message to my doctor early last week. My primary care physician ordered blood work and sent me to a hematologist in oncology. The hematologist said it was "very unlikely" cancer and ordered more blood work. Further blood work confirmed I have iron deficiency anemia.
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All my blood work was normal apart from the indices related to iron deficiency. Ferritin was low, indicating iron deficiency and not anemia of chronic disease. Bone marrow is producing a normal amount of red blood cells. I have not recently donated or lost substantial quantities of blood. I have not had any tarry stools or seen blood in my stool. A rectal exam was negative for the presence of blood. (This test involved a doctor inserting a gloved finger into my rectum and then testing the glove for blood.) I have no bruising and my blood clots normally. I have not seen any blood in my urine. I have no other ongoing health conditions.
For the last 5 years, I have run 52 miles a week. I eat very little red meat, no more than a few times a year. I do regularly eat poultry, fish, and eggs. I have had semi-frequent nose bleeds, averaging one a month, since childhood.
The hematologist put me on a high potency iron supplement -- 130mg of iron and 250mg of vitamin c per day.
All my doctors have discounted the possibility the anemia could have been caused by my running, despite there being ample evidence in medical journals that excessive exercise can lead to iron deficiency.
If it's not cancer and i'm not losing blood through my gastrointestinal tract, what is causing it? I do feel improved since starting the iron supplement on Monday, but my athletic performance is not where I'd like it to be. I don't have any further doctor visits scheduled at this time. I am to have blood work in 1-2 months to test my iron levels again.
My blood work is below:
TOTAL IRON BINDING CAPACITY 380
IRON/TOTAL IRON BINDING CAPACITY 6%
VIT B12 549
RETICULOCYTE COUNT, ABSOLUTE 2.5
PLATELETS, AUTOMATED COUNT 206
CHOLESTEROL, NON-HDL 84
GLUCOSE POST FAST 87
ALBUMIN/GLOBULIN RATIO, SERUM/PLASMA 2.7
ALKALINE PHOSPHATASE 51
BILIRUBIN, TOTAL 0.8
PHOSPHATE, BLD, QN 4.2
I have been low iron since i was born. Only recently has my doctor been checking my levels and trying to raise my iron from anaemia. My doctor says that i should be getting between 800 - 1000 mg of iron a day. That means i have to take an iron pill four times a day. So when should i take the pills? Do i take them right after or before meals? I will go back in two months and they will draw blood to see if my iron has improved. I am just wondering what to do in the meantime to improve my iron results?
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I've been on ferrous fumarate for 3 months and doctor says my results are improving (hemoglobin has reached normal and ferritin has went from 1 to 12)
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My symptoms were continuing so I was tested for B12 deficiency and got result today. B12 came back as 276. The doctor left a message to say continue with iron for 3 months and that was it! I am really down as I don't know whether the iron will up my B12 or not? I don't know if this means my B12 is on the up or if the iron tablet has nothing to do with it?
I've just heard from my GPS surgery that my most recent blood test shows I have virtually no iron! As I have several autoimmune diseases including autoimmune hepatitis, rheumatoid arthritis, SLE (lupus), Raynauds, Sjogrens, acquired autoimmune hypothyroidism) , I'm rather afraid that this could be pernicious anaemia or hemolytic anaemia, as I've never had a low iron level until now. I was taken off methotrexate due to respiratory problems (side effect) and am on prednisone 25mg/day. Does anyone have any experience of sudden iron deficiency please?
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I had a baby back in April 2014 at which time my other labs were within normal limits except for my Hgb and Hct (7 and 24 I believe). I recently followed up with my primary care doctor for symptoms of chest pain, shortness of breath (especially with exertion), and the biggest symptom- extreme fatigue. When I get up in the morning I feel like I've never slept, and by the afternoon I feel like I need to go back to bed for the rest of the day. I realize I have a 3, almost 4 month old baby, but she sleeps through the night for the most part, so it's not like I'm not sleeping at all through the night. I had labs drawn last week and the main results were as follows:
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Ferritin, Serum- 7 (15-150)
TIBC- 415 (250-450)
UIBC- 368 (150-375)
iron saturation- 11 (15-55 %)
iron, serum- 47 (35-155)
rbc- 4.93 (3.77-5.28)
hemoglobin- 11.5 (11.1-15.9)
hematocrit- 37.5 (34.0-46.6)
mcv- 76 (79-97)
mch- 23.3 (26.6-33.0)
mchc- 30.7 (31.5-35.7)
rdw- 17.1 (12.3-15.4)
WBCs, Thyroid, B12, and HgA1C all looked good. From what I've read, it seems that I may have iron deficiency, but because the hemoglobin and hematocrit are within normal limits it is not classified as anemia. What I don't understand is I just spoke with my Dr. office, and the nurse said the doctor checked off my lab results and didn't put a note in that she needed to see me for a follow-up. The nurse asked me if I had any concerns about my lab results. I guess I'm just not sure if my lab results are "off" enough to be causing my symptoms, or if something else is going on. Should I be started on iron supplements? I'm just not sure where to go from here.
I initially found out I had mild iron deficiency about 6 months ago and the GP didn't tell me to take anything. I've been taking floradix on/off (finished a bottle) and redid my blood work with a new GP. The results seem to have gotten slightly worse, but this new GP also just recommended to take a multivitamin. Neither doctor seemed concerned. Anyway, here are the latest results (this new doctor didn't test ferritin; my old result 6 months ago was a 3)
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Hemoglobin - 11 (low)
MCV - 78 (low)
MCH - 25.2 (low)
RDW - 15.6% (high)
TIBC - 538 (high)
UIBC - 480 (high)
Iron Saturation - 11% (low)
Iron Serum - 58 (normal)
Vitamin B12 - 348 (normal)
Anyone know exactly how bad my case is? I am located in NYC; if anyone has a good doctor that takes iron deficiency more seriously, can they recommend the doctor?
I am 25 I was diagnosed with stage 5 ckd at 14. We found this issue doing blood work for my Crohn's disease. So needless to say between the two I have a hard time keeping my nutrients up. Every time I get blood work I am anemic. I told my nephrologist that I was taking vitamins with iron to try to get it up and he said it is pretty much pointless because people with ckd do not absorb it orally like normal people. So my question is what do you do to try to keep your iron up? It has been such a struggle being so young and never having energy to do anything.
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Well as it appears my vit D is a bit low. It's 18 and my Iron is 10. For a very long time now I've been feeling quite unwell to the point I can barely function at all. It's been a long struggle trying to find out what's wrong with me given that all of the tests I ever did were excellent. I'be for a while now I had an iron deficiency, but I haven't known about vit D up until yesterday. These are my symptoms has anyone had this?
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- extreme fatigue
- lingering anxiety
- muscle weakness
- muscle stiffness
- occasional numbness
- internal tremors
These are the most common ones and I don't always experience all of them. Also it's like I always feel a need to warm my body with warm water bottles and such. It's gotten to the point I never leave my bed even when I feel better because I'm afraid I might feel unwell. And I know this is so bad because on top of everything my body is getting deconditioned, but I can't make myself do it because I get so anxious.
These were done during a regular physical exam and my regular dr. said I was definitely anemic, but she never did do an iron panel. After thinking back on my symptoms, I had several..headaches, tinnitus, fatigue, rapid heart rate with exertion, and shortness of breath with exertion. Three weeks ago I was started on iron supplements. Here are my abnormals or near low normals from 3 weeks ago:
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RBC 5.45 (4.00-5.36)
Hgb 12.5 (12-16)
MCV 74 (81-98)
MCHC 30.9 (31.2-35.2)
RDW 24.2 (11.0-14.5)
She determined that my anemia was due to menorrhagia and I then made an appt. with a GYN.
The GYN looked at these labs and said this is NOT anemia. She then ordered an iron panel, which she said was normal:
She called today and again said this is not anemia, but some other blood issue must be going on. She mentioned thalassemia and suggested that my regular dr. refer me to a hematologist. I am so frustrated and confused. I can't see my regular dr. until Mon. but I'm thinking it's still anemia?
Here are my lab results:
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WBC 6.6 (4-10.8)
Ly 25.8 (20.5-51.1)
Mo 9.7 (1.7-9.3)
Gr 64.5 (42.2-75.2)
Rbc 3.74 (4.2-6.1)
Hgb 10 (12-18)
Hct 30.3 (37-52)
Mcv 80.9 (81-99.9)
Much 26.8 (27-31)
Mchc 33.1 (33-37)
Rdw 14.5 (12-15)
Plt 218 (130-400)
Mpv 8.2 (5-10)
My iron and ferritin were normal (don't have a copy of the results, just was told they are normal). Also, b12 and d are normal.
What kind of anemia does this look like? I DO have a history of iron deficient anemia, but my ferritin was like a 3.
Below are my symptoms. Saw the doc about a week ago, and symptoms are much worse than then. I am on an iron supplement.
Shortness of breath
Extreme lightheadedness/dizzy spells/near syncope
Basically I am hardly functional. I have gone home early and missed a couple days of work, because I literally couldn't do it. I have had to spend almost whole days in bed. Very small things wear me out. I was placing items in a box (that was on my lap) at work today and got weak and short of breath.
Does this not seem crazy for a hgb of 10?? I have been in the 8 range, and while I felt really, really bad, I was not this dysfunctional.
Also, I have been having the dizzy spells/lightheadedness/near syncope and some actual syncope for over a year. The drs are still trying to figure this out. They are a good deal worse right now.
Any thoughts or advice?
I have a friend who has had iron deficiency anemia since she was like 18 years old from what i heard. She's now having severe iron deficiency anemia and is having two IV injections of iron a day and the doctors do not know the cause still. She's on gluten free diet and oral iron therapy doesn't work on her. Now her situation is getting bad by the day. Does anyone know anything that could suggest a reason for this ?
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66 year old husband who has always been fit and healthy developed unstable angina and within three days was fitted with a stent. This was at the end of January. Not been feeling too great since a few days after and now the doc has said he is suffering from anaemia and will have to go for a colonoscopy.
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hubby cant understand this as he was never anaemic before.
I have been iron deficient all my life, but it's at a critical point right now. I see a hematologist on September 14th. It takes everything out of me to get up each morning and go to work. I come home and just want to sleep. I am freezing cold all the time and eat ice constantly. I'm extremely moody and my husband doesn't understand my condition, so I am turning to the internet for support and help. I'll be getting an iron transfusion and blood transfusion as well. I don't absorb iron like everyone else as I had a gastric bypass in 2008. I am also not absorbing my Vit D 50,000 IU pills once a week either. I'm just at my wits end here.
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Does anyone know what the Drs. do if they can't get your hemoglobin back up to within normal limits? They say I have lost the ability to store iron. I have had 4 infusions and have very little results.
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I'm scheduled for 8 more. I am a little alarmed because the Dr is disappointed that I haven't recovered better. How much trouble am I in here?s.
I think I may have iron deficiency anemia my mom had it when she was younger and I have really bad nose bleeds in the middle of the night I have also fainted and I don't want to go to the doctor. Just wondering how dangerous could it be?
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Just wondered how long this tiredness lasts. Feel tired all of the time. Don't know whether to increase the iron tablets.
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