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- Sat Nov 01, 2008 7:00 pm
I have always suffered with anemia. A few times on the verge of a blood transfusion. This year I was offered eight treatments of iron IV's in place of a transfusion. After the first transfusion I felt like I was having a heart attack, was in severe pain all over, had abdominal pain, bleeding, and suffered other symptoms. I can't take any over the counter iron supplements, even the easy iron, because it causes severe abdominal problems and bleeding. In all appearance, I am allergic to iron. I've spent my life fatigued and in pain. Need help!
| Dr. Safaa Mahmoud
- Sat Nov 08, 2008 2:14 pm
It would be more helpful if you can provide us more information about the complete blood picture results, reticlucytic count, iron, folic acid, VitB12, TIBC (if nay was done) and the results of the investigations done to find out the cause of this anaemia.
The best way to treat conditions like yours is treating the cause rather than the symptoms. So, if the cause is the hematuria then I would like to know what kind of treatment you have received for this condition and whether your doctor have suggested other treatment lines or he is suspecting other causes and is investigating them
Regarding the poor tolerability you have shown to iron intake whether oral or IV, unfortunately this is not uncommon problem. Your doctor is in position to better evaluate the reactions and the side effect from each route and chose the best for you. For example, nondextran irons given IV have reduced risk for anaphylaxis so he can think of it of was not used or reconsider the oral route.
In all cases your doctor will reevaluate the whole situation and consider the more convenient therapy for your specific condition.
So, I would advise you to follow up with your doctor.
Please keep us updated.
- Sat Nov 08, 2008 5:22 pm
I have been going through tests since I was nine years old. My iron level has always ranged between 9.2-11.6. Sonograms since that time have shown pools of blood in my abdomen, but never any indication where it was coming from.
For the first time, I will be undergoing endoscopy and colonoscopy on Wednesday. Currently, and it's new, I have elevated levels of lipase.
I have a sering pain that I've always had in my right side just below my ribs and it hurts from front to back. It gets worse with certain things such as eating yogurt, drinking dark colored soda, any type of physical exertion...etc. Most times that I am physically active, I bleed with bowel movements.
I'll update when I know more. Thank you for writing.
| Dr. Safaa Mahmoud
- Mon Nov 10, 2008 4:30 pm
You are welcome.
It is very good that you will be investigated for the possible cause of this anaemia and blood loss.
Endoscopy would be very helpful. But if they are negative, I guess your doctor may recommend laparoscopy if there is as you mentioned blood collection inside the abdomeninal cavity.
It would be helpful if you inform us about the sonographic results exactly as written in the report.
Please update us about your results.
- Mon Nov 10, 2008 7:10 pm
Just to clarify, I have not had any transfusions. Only one iron treatment. The title of this thread is incorrect as is the wording that was posted in the original.
I'll update after I get results. :)
- Thu Nov 13, 2008 12:08 am
My endoscopy and colonoscopy went well today. The doctor said that everything looked great and I didn't need to come back until I'm 50. (I'm 36 now.) So that was great news even if it was another dead end. I have to admit, I should have been more happy that the doctor was so pleased with the health of my intestines, but I ended up crying. I want so desperately to find out what's causing my problems!! I just want to be normal and go back to work so I can provide for my family and DO things again!
For now, I'm really suffering with intense sleepiness. I want desperately to work, but there is no way I can predict what I'll feel like from day to day...or hour to hour. Lately I've had a little energy first thing in the morning for 2-3 hours, then I crash after lunch. Then I get an energy spurt around 8-10:00 at night. I usually go to sleep between 10:30-12:00, depending on how my day went and whether or night my anxiety is low enough. As my panic rises, I get very little sleep at night.
Anyway, I go back in two weeks after the results from the biopsies have returned. I'll update when I get more info and after I get copies of my blood tests to give more specifics.
- Mon Jan 05, 2009 11:26 am
Today I received the news that I have tested positive for Von Willebrand Disease.
My levels for the most current series of blood tests are:
Von Willebrand Positive (elevated levels...unsure how high)
I go in Wednesday (because tomorrow is my b-day) to have an abdominal and pelvic CT scan. I know that have ovarian cysts on both ovaries that have been there for years, new uterine fibroids, lipase elevation that questions a problem with my pancreas, and HPV with cervical displasia that has not been tested in a while and could possibly be cancerous. I don't think it's cancerous, but we'll see.
After that I will be going to see a new hematologist to find out which level of VW I have and what treatments it will require.
Although I'm not happy to find out that I have this disease, I am very happy to have been diagnosed with the autoimmune disease that has plagued me my whole life. After 100's of doctor appts, tests, scans, pokes, and prods since I was appx 6 years old, this is such a huge milestone!
Happy New Year!
- Fri Jan 09, 2009 4:26 pm
More accurate results...
Lipase (1st - 84, 2nd - 68, 3rd - 67)
Ferritin (not hemoglobin) 5.0
von Willebrand Factor VIII Activity 218.0
von Willebrand Factor (vWF) Ag 171.0
vWF Activity (normal) 127.0
CT Scan results:
left ovarian cyst (has been there for many years)
right uterine fibroid
left kidney cyst
pancreas is fine
* Colonoscopy and endoscopy normal as of Nov 2008.
* Dad has cysts on his organs too. Also has hypertension (but he's a mean ol' fart). Is pathological liar and possibly has other mental disorders.
* Mother has hypothyroidism, schizophrenia, and chronic undefined abdominal problems.
* Paternal grandmother mentally disturbed. Died in her 70's, I believe.
* Maternal grandmother died at 55 from either colon or rectal cancer (I don't know the difference if there is one).
* Both grandfathers had shingles. Paternal had dementia for 10+ years. Both lived into 80's.
* I also have fibrocystic breast disease.
* I had ANA at 1/80 in Jan 2005, therefore diagnosed with Lupus to later be "undiagnosed" when level was normal in April/May.
* Diagnosed with fibromyalgia, hypothyroidism (level barely within normal range, but responded incredibly to treatment!!), long term severe anxiety, long term severe depression, long term chronic sinus problems, long term previous chronic bronchitis (until 26 years old), long term chronic yeast infections, HPV with cervical displasia (no cancer detected in CT), long term chronic vaginal infections (no sexual activity in months), torn rotator cuff, minor disk protrusion in neck from car accident, shattered coccyx, deteriorated disk in lower spine, extra muscle in hand leading to hand fatigue, bow-legged, tooth decay since young age, long term chronic iron deficient anemia, long term chronic fatigue and drowsiness.
*Fainted after severe abdominal pain multiple times in 2005 and have more recently come close again...thwarted fainting by precautionary care when stomach pains and lightheadedness started, such as consuming icy treats, cool air, relaxation.
*Three live vaginal births with no medications. First birth at 17 years and 8 months. Traces of bleeding during all pregnancies. All births on a full moon. :)
- 1st: one week early, APGAR 9 (has schizoid traits and depression)
- 2nd: one week late, APGAR 7 (inhaled a lot of mucus. had seizure disorder and has brain scarring from migraine. has histrionic traits and depression.)
- 3rd: started going into labor at 32 weeks. Four times in labor. Concerns about bleeding and unable to stay hydrated. Born on time, but midwife concerned about excessive bleeding after birth that took too long to stop. Baby had thrush. APGAR 8 (has insignificant heart murmur and traces of blood in urine. Has severe anxiety, depression, schizoid traits, and OCD.)
* Remember having sonogram on abdomen between 6-8 years of age due to same pain in my right side under bottom of rib cage that I still have today.
* Chronic fatigue and drowsiness as a small child. (and still) Remember begging Mom to let me go to the playground even though I couldn't stay awake. Would hide in tubes and tunnels to take naps between sliding and swinging.
* Suicidal as long as I can remember. Remember being 3-years-old and "wishing that I was never born". Hid in toy box hoping that I'd be forgotten about and would die.
* Was molested, possibly raped initially, by multiple people starting at age 5-7 until age 11.
Current or recent symptoms:
other than stated above...
* PAIN in right side from front through to back in area just under the bottom of my ribcage
* Exercise (even mild), lifting objects, stress, food/chemical consumption some culprits of bleeding found in abdomen in sonograms and in urine, vaginally, rectally, and in mouth. do not have nose bleeds. Sometimes bleeding is severe enough to scare me, but the doctors and ER's never do ANYTHING to help, so I quit going in when it happened.
* Large blood clots during period.
* Body pains and aches (random)
* Pain, similar to swelling, in hips and legs during period that is excruciating.
* Severe, crippling anxiety
* Depression (Overwhelming suicidal thoughts when weakened and feeling ill)
* Sensitive to food additives, caffeine, citric acid, whatever is in Tootsie Rolls and brownies (makes my skin feel like nerves are exposed), dogs, smells, starch, and I'm sure other things I can't think of right now.
* Need to consume icy treats. Have always eaten ice or needed to drink icy drinks or eat popsicles to ease abdominal pain and anxiety. WHY?
* Too fatigued to get around normally. I am at home most of the time since about two months ago because I'm too weak to be away from the house and have a lot of pain with walking around.
* (5' 3" and appx 132 lbs)
* Heart palpitations since appx Dec 2007 or Jan 2008 with movement or out of the blue
* Chest (lung?) pains since 2008 with movement
* Chronic yeast infections (no douching, but clean person)
* Chronic vaginal infections
* Fatigued hand, can not write for long and at times can't type for long (use tablet pc) and do not have strength in hands to open bottles/jars or hold onto things
* Pale skin
* Vision and hearing are fine, correction optional
* Get unusual "bumps" on chest area that are not pimples, but similar. Swell up, itchy, and have fibrous centers. Chest covered with small "doodle-bug hole" scars.
I'm too tired to write any more. If I missed anything, I'll figure it out and come back to it later. I would appreciate any suggestions or responses related to this!!
Dr. Safaa Mahmoud?
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