Blood Vessel :: Exjade For Iron Hemochromatosis
Aug 19, 2013
I have not long found out that I have hemochromatosis (iron overload) as well as hepatitis C (very stable with normal LFT). My venesection attempts were unsuccessful due to small veins, so I was put on Rx Exjade 14 days ago to chelate the excess iron. It gives me liver and kidney pains - its side effects involve liver and kidney issues and possible failure of. I have just got the results of my liver function and was very surprised had all my liver enzymes have risen significantly in such a short time. I have ceased taking Exjade as of today. Is there any other less invasive chelate?
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I am 53 and have 600 ferritin 71% iron saturation. I have done phlebotomy 2 weeks in a row. hemoglobin is now 132 . Therefore I could not give blood. Why is my Hemoglobin low when my iron is high. By the way my ferritin dropped to 475
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has anyone stuck with a low iron diet. Have you found the results to be beneficial. I will do anything to avoid more blood draws!
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anemia and iron overload at the same time.
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My 11 year old daughter has recently been diagnosed with juvenile hemochromatosis. We have been waiting on her gene test for quite a few months due to the most common tests not showing anything, we have now been told she is carrying one of the genes for this disease but it wouldn't be the only reason she has iron overload. Has anyone else been in this position or know of any other reason other than hemochromatosis that could cause iron overload?. We are not due to see the doctor until October to go over her results in detail and she is referring her case to two professors in Cambridge as yet again we seem to have hit a brick wall.
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My general/gastrointestinal surgeon request a complete blood test as a pre-surgery exam in order to perform a fundoplication, to solve a gastroesophageal reflux disease (GERD) that I've had for three years. My condition is not responding to high-dose proton pump inhibitors, diet or lifestyle changes, because I have a hypotensive lower esophageal sphincter and my esophagus peristaltic rhythm is lower than normal.
I've been taking 80 mg (2x40 mg) of esomeprazole + 20 mg (2x10 mg) of domperidone daily for about a month, and during the day before the blood exam, 900 mg (3x300 mg) of ibuprofen in 8 hours interval, as I was having a muscle pain on thighs due to heavy exercise on weekend without warming up properly. The pain has since completely gone.
I did the blood exam yesterday, on Tuesday at 8:30 (I took the last pill of ibuprofen on Monday at 22:30), and receive the results today. I explained to the nurse who drew my blood that I took these medicines. My platelet count was low (thrombocytopenia), and I suspect due to either the PPI drug or ibuprofen.
As you might know, the platelets are essential in blood coagulation process after a an injury (such as a surgery), which is something the surgeon needs to be sure that I don't have coagulation problems and will have a hemorrhage during the procedure.
The normal platelet value is between 150,000 and 450,000, but in my result was 143,000. The Platelet Distribution Index was 72,7%, when the normal values should be between 25 to 65% according to the parameters in the result. Mean Platelet Volume is 10,1 fL (femtoliter), which is within the normal range (7,2-11,1) fL. Every other coagulation parameter is normal, along with HDL, triglycerides (in optimal or normal range), etc.
All my previous blood tests resulted in normal values of platelets amount, but I wasn't taking any medication when I underwent the complete blood test. I read the package inserts for esomeprazole and ibuprofen (or any other NSAID), and thrombocytopenia was among the possible adverse effects. I think that the ibuprofen is the main culprit, I only took it because I had a major muscle pain (due to extreme fatigue) that really hurt, but I didn't know it could interfere with the platelet production. As I said, I told the nurse i took these medicines.
I don't know if the surgeon will think that I have some blood or vascular disease (which I don't believe, as all my previous blood exams were normal and I don't have any symptoms) and will not do the procedure on me. Should I ask him for a 2nd blood test to see if platelets levels will get back to normal? Or he will take the fact that I've been taking 3 medicines into account? and consider this a pretty much normal or expected result?
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I was diagnosed with Hemochromatosis over 1 years and undertook regular blood lettings until my ferritin dropped from 700 ish to 35.
The reason I knew something was up was because I was tired, stressed and my emotions were just not what the use to be. I also felt as if I was in a constant brain fog.
However, even know with my reduced levels I don't feel great. I have undertaken some EDTA Chelation and feel great when this is done, having checked my bloods before and after - this reduces my iron, ferritin and Transferrin Saturation.
Is there a way to reduce TS to normal or near normal levels.
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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)
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?
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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:
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)
anisocytosis present
hypochromasia present
ovalocytes present
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:
Iron 142
TIBC 356
Ferritin 14
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?
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Here are my lab results:
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.
Extreme exhaustion
Weakness
Shortness of breath
Chest pains
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?
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My husband (41) has some routine bloodwork which showed iron deficiency anemia which is uncommon in men. His hgb was 12.5, hct was 40, iron was 41. He has been referred to a GI who want to work him up with colonoscopy and egd. He has not had any bowel changes and digital exam showed no blood. However in January he said he noted a very small streak of blood on the toilet paper after passing a very hard stool. This happened a few more times after. Until the sore area healed. We are terrified of colon cancer since iron deficiency anemia is so uncommon in males. If he hadn't had the bloodwork, we would not have even known there was a problem. Does anyone have any insight on the iron deficiency and potential cancer?
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Just when I thought I understood the condition I was surprised when someone I know with classic symptoms of Haemochromatosis was told by their doctor their blood test was normal, in fact bordering on anaemic. Could an ignorant GP misinterpret the results? What else could this be?
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I was hit by a drunk driver November 2013 on my motorcycle. I had a lot of injuries. My spleen ruptured (shattered) but they left it in. I have a lot of memory loss till this day and some things I wasn't aware of. Long story short I went to the chiropractor 6-19-15 and I got chest X-rays done and the doctor noticed a metal like wire in my body which I was unaware of. Come to find out I had a metal coil placed in my vessel to help cauterize the bleeding from the spleen. My question is that no one can seem to answer for me is, should that coil of been removed or is it in me permanently? I've been told yes and no...
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How often do you have venesections? When you have them how much blood do they take (500 cc.'s)?
After getting to your number, how often have you had to have more venesections?
Somewhere I read that it may be better to take smaller amounts of blood more often.
I realize everyone is different but just trying to get a handle on this.
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I've been diagnosed with Haemochromatosis . My ferritin level was 1421.
I've only had 4 venesections so far but my levels are down to 700.
I know ferritin levels can fluctuate but to me this is a drastic reduction considering I've only been having treatment for a month.
Is this normal.
Also my feet get extremely cold at night if I'm just sitting down Reading or watching TV. I also have to wear bed socks at night as they are so cold. Could this be due to bad circulation and is it a symptom of Haemochromatosis.
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I'm 25 and was told I have hemochromatosis about a year ago. I drank pretty heavily in college and have on weekends since. I eat a healthy diet and exercise regularly. I noticed a slight tint of orange on one of my fingers and fearing the worst. I have slight discomfort on my right side sometimes but never pain.
I question if I have done too much damage to myself and fearing the worse. I had questions as does this condition take years to effect or can it take a turn for the worst in the 20's?
I have been going with Green Tea and many other recommended options for a long time. Do others that have this cut out alcohol completely?
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Has anyone out there known someone to have a liver transplant due to hemochromatosis? If so, what was the experience like" Did the patient continue to store iron afterward?
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After reaching the required level of 50 or below, I was told I didn't need to be tested for 3 months. Was wondering if anyone on the maintenance program has had to have more phlebotomies or has it remained a constant at lower than 50?
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I was recently diagnosed with Hemochromatosis. I am waiting for the genetic testing result before they do treatment. One of the issues I have been having is hair loss, which led to me getting my iron tested. Have others of you experienced hair loss? Once you started getting treatment (blood drawn) did your hair grow back? Did you have to do other treatment for the hair loss?
I should probably be more concerned about other aspects of this disease, but as a woman in her 40's, losing half your hair is very disconcerting. I also feel like my scalp is burning or tingling quit a bit. That and the hair loss started about 6 months ago.
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A genetic test has just come back that I have this. Can someone help me understand this and is this why I'm exhausted all the time.
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I have just been diagnosed as having haemochromatosis and really scared as i don't like needles and don't know much about this and the doctor only told me i had it over the phone i am not sure what to expect but i am really dizzy and sick with it and seem to sleep a lot but i also get awful thirsty the doctor won't give me medication as she says she has to see how to deal with it.
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