Discussions By Condition: I cannot get a diagnosis.

Sick for 20 years and its getting worse

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • October 19, 2010
  • 05:19 PM

Hello all - I have been sick since I was 12 years old. I was hospitalized for anemia for well over a month then, and it has plagued me since. Below is a run-down of the symptoms and when they started. I have been to cardiologists, neurologists, gastroenterologist, hematologists, oncologists, rheumatologists and dozens of gp's. My husband is active duty military, so we start over every six months!

1994-2010 - Anemia. IV iron monthly for about six months out of the year.
2006 and 2010 - Unexplained losses of conciousness. Followed by weeks of "fog" where I have no memory
2006, 2008, 2010 - sever lower left quadrant pain. Suspected kidney stones or ovarian cysts, but no confirmation through CAT scans or ultrasounds. The pain subsides after about two weeks.
2009-2010 - Constant headache. About a 2 or 3 on a 1-10 scale daily with days of 11 or higher. Topomax was given, but no relief.
2009-2010 - Heart palpitations (flutters). These are occasional, but worrisome. All cardiac tests came back normal.
2009-2010 - Debilitating fatigue. I am not able to even walk to our mailbox, or cook diner most nights. Sometimes I am too weak to feed myself.
2009-2010 - Feels like my insides are shaking, and my hands shake uncontrollably.
09/2010 - feeling of my legs falling asleep. Burning, tingling discomfort that comes and goes.
10/2010 - Sever leg cramps that wake me in the middle of the night screaming.

I have had a positive ANA (09/2010) but the titer was too low to diagnose Lupus or other diseases.
I have had numerous tests and my heart and brain are both functioning normally.

Does anyone have similar symptoms? If so, can you tell me where to go from here? I am currently trying to get a bone marrow aspiration and biopsy to rule out issues on that end...or finally diagnose the type of anemia I have. But, military healthcare is sometimes a headache in itself!

Thank you!

Reply Flag this Discussion

12 Replies:

  • Hello all - I have been sick since I was 12 years old. I was hospitalized for anemia for well over a month then, and it has plagued me since. Below is a run-down of the symptoms and when they started. I have been to cardiologists, neurologists, gastroenterologist, hematologists, oncologists, rheumatologists and dozens of gp's. My husband is active duty military, so we start over every six months! 1994-2010 - Anemia. IV iron monthly for about six months out of the year.2006 and 2010 - Unexplained losses of conciousness. Followed by weeks of "fog" where I have no memory2006, 2008, 2010 - sever lower left quadrant pain. Suspected kidney stones or ovarian cysts, but no confirmation through CAT scans or ultrasounds. The pain subsides after about two weeks.2009-2010 - Constant headache. About a 2 or 3 on a 1-10 scale daily with days of 11 or higher. Topomax was given, but no relief.2009-2010 - Heart palpitations (flutters). These are occasional, but worrisome. All cardiac tests came back normal.2009-2010 - Debilitating fatigue. I am not able to even walk to our mailbox, or cook diner most nights. Sometimes I am too weak to feed myself. 2009-2010 - Feels like my insides are shaking, and my hands shake uncontrollably.09/2010 - feeling of my legs falling asleep. Burning, tingling discomfort that comes and goes.10/2010 - Sever leg cramps that wake me in the middle of the night screaming.I have had a positive ANA (09/2010) but the titer was too low to diagnose Lupus or other diseases.I have had numerous tests and my heart and brain are both functioning normally.Does anyone have similar symptoms? If so, can you tell me where to go from here? I am currently trying to get a bone marrow aspiration and biopsy to rule out issues on that end...or finally diagnose the type of anemia I have. But, military healthcare is sometimes a headache in itself!Thank you!Tell me, have you ever had a 3 hour glucose test?Severe leg cramps in the middle of the night is one of the most defining symptoms of an undiagnosed diabetes.Diabetic Neuropathy can account for your burning, tingling sensations.Fainting, brain Fog, headache, heart palpitations, fatigue, and shaking (especially hands) are all signs of diabetes/hypoglycemia.Those with diabetes get common causes of severe abdominal pain such as appendicitis, perforated ulcer, inflammation and infection of the gallbladder, kidney stones, and bowel obstruction.I hope that these symptoms which have plagued you all these years aren't from something that should have been easily diagnosed. I hope you feel better.By the way, anemia is common in diabetes.
    keanhe 86 Replies
    • October 20, 2010
    • 06:50 AM
    • 0
    Flag this Response
  • Thank you for your response. Yes, about every two or three years my GP at the time will call for a glucose evaluation. They are of course always well within the normal range! Recently, my iron levels have dropped dramatically again, so I am starting another 6 month round of IV iron, and I am scheduled for a hysterectomy in three weeks....My dr thinks it is best way to rule out any GYN problems. I am going for a second (and possible third) opinion on that front!We will see! I am also trying to go to a doctor that is not associated with a Military Treatment Facility. Maybe they will be able to think of something else???Thanks again!
    Anonymous 42789 Replies
    • October 21, 2010
    • 08:20 PM
    • 0
    Flag this Response
  • Thank you for your response. Yes, about every two or three years my GP at the time will call for a glucose evaluation. They are of course always well within the normal range! Recently, my iron levels have dropped dramatically again, so I am starting another 6 month round of IV iron, and I am scheduled for a hysterectomy in three weeks....My dr thinks it is best way to rule out any GYN problems. I am going for a second (and possible third) opinion on that front!We will see! I am also trying to go to a doctor that is not associated with a Military Treatment Facility. Maybe they will be able to think of something else???Thanks again!Tell me, did you ever have an anti-endomysial antibody, anti-gliadin antibody, or anti-tissue transglutaminase antibody test? How about biopsies from endoscopes? The gastrointestinal tract is both the site of iron uptake and the most common site of blood loss. The gastrointestinal tract is unrivalled as a potential site of occult blood loss. A Wireless Capsule Endoscopy is your best bet for a diagnosis, as it is the only means of examining your entire digestive system.I would be appalled if your gastroenterologist hasn't already scoped you from each end!If he hasn't (please tell me he has), there are also a few other diseases dealing with the gastrointestinal tract, and you should have a colonoscopy and upper endoscopy ordered immediately.The chances of this problem being somewhere else are minimal, unless you have some type of neoplastic disorder and haven't yet stumbled upon the perpetrator. How often has your thyroid been checked, and are there any borderline levels? Hypothyroidism is plausible (actually a long shot, but you never know), and is connected to iron deficiencies, in addition to other symptoms you present with.I have my emails set to alert my smart phone at all times, so I see when you reply. I hope your feeling ok.
    keanhe 86 Replies
    • October 21, 2010
    • 09:52 PM
    • 0
    Flag this Response
  • The Gastro has scoped both ends...not the most pleseant experience, but all is fair in the quest for answers. I have actually had 4 endoscopes and colonoscopys. All are always normal. I did have a small area that looked to be forming an ulcer when I was 12, but nothing ever came of that. I have never had the capsule...It was scheduled once, but military healthcare did not approve it. The endometrial biopsy was normal. I have 4 healthy kids, so I wasn't expecting any problem on that front. All of my girl hormones are perfectly normal. The ultrasound showed normal values and no structural abnormalities. I think my GP is just trying to cover his bases, and a hysterectomy is an easy procedure to get approved with my insurance.The other tests you mentioned have not been done, but I have written them down and I will take them to my appointment next week. Can you tell me what these tests are? Are they autoimmune disorders? My husband and I both tend to think the symptoms are autoimmune, but I have only had the ANA, and that was as my GP calls it a "false positive".As for the thyroid, I have had quite a few levels drawn. Looking back over the results, I see that the numbers are all over the place...from borderline high, to pretty low, and everywhere in the middle. Evidently they have never been skewed enough to cause any red flags for my drs.Thank you so much for helping. I am at a loss! I just want to get better and be a better mom and wife! My family deserves more than this!
    Anonymous 42789 Replies
    • October 22, 2010
    • 03:00 PM
    • 0
    Flag this Response
  • The Gastro has scoped both ends...not the most pleseant experience, but all is fair in the quest for answers. I have actually had 4 endoscopes and colonoscopys. All are always normal. I did have a small area that looked to be forming an ulcer when I was 12, but nothing ever came of that. I have never had the capsule...It was scheduled once, but military healthcare did not approve it. The endometrial biopsy was normal. I have 4 healthy kids, so I wasn't expecting any problem on that front. All of my girl hormones are perfectly normal. The ultrasound showed normal values and no structural abnormalities. I think my GP is just trying to cover his bases, and a hysterectomy is an easy procedure to get approved with my insurance.The other tests you mentioned have not been done, but I have written them down and I will take them to my appointment next week. Can you tell me what these tests are? Are they autoimmune disorders? My husband and I both tend to think the symptoms are autoimmune, but I have only had the ANA, and that was as my GP calls it a "false positive".As for the thyroid, I have had quite a few levels drawn. Looking back over the results, I see that the numbers are all over the place...from borderline high, to pretty low, and everywhere in the middle. Evidently they have never been skewed enough to cause any red flags for my drs.Thank you so much for helping. I am at a loss! I just want to get better and be a better mom and wife! My family deserves more than this!The antibody tests that I described were for Celiac Disease. Some antibodies will be negative in people, while others positive. For example, the anti-gliadin antibodies are produced in a response to gliadin, which is found in wheat, while the anti tissue transglutaminase are produced in an attack on your tissue transglutaminase enzymes, which plays a role in wound healing. Anti-Ttg is the best antibody test for diagnosing celiac. It just might be a good idea have them done, but biopsies have always been the golden standard....Do you have a history of drugs? How is your alcohol consumption?If those two subjects are not the problem, then...To be honest, I think you might have Grave's disease. I base this off the following facts:Grave's disease is most common in women, aged 20-40.You suffer from chronic fatigue.Your ANA test is increased.You experience tremors.You have nocturnal leg cramps.You have heart palpitations.You have experienced sudden losses of consciousness.You have fluctuating thyroid levels.I believe the anemia is obviously just Iron Deficiency Anemia, and that is where your headache stems from as well.You should see if your physician would order a radioactive-iodine uptake test and thyroid scan. In addition, an assessment of fT4 and sensitive TSH should be ordered as well.If by some miracle that all comes back normal... It's probably time to look into Multiple Sclerosis.Good luck to you, if you have any questions, please feel free to ask as I hover on these boards... Great practice for my future career =)
    keanhe 86 Replies
    • October 23, 2010
    • 06:21 AM
    • 0
    Flag this Response
  • By the way, I just read about your ANA.Types of AntibodiesIn order to understand the ANA (antinuclear antibody) test, it is first important to understand different types of antibodies.Antibodies are proteins, produced by white blood cells, which normally circulate in the blood to defend against foreign invaders such as bacteria, viruses, and toxins.Autoantibodies, instead of acting against foreign invaders as normal antibodies do, attack the body's own cells.Antinuclear antibodies are a unique group of autoantibodies that have the ability to attack structures in the nucleus of cells. The nucleus of a cell contains DNA.ANA (Antinuclear Antibody) TestSerum from the patient's blood specimen is added to microscope slides which have commerically prepared cells on the slide surface. If the patient's serum contains antinuclear antibodies (ANA), they bind to the cells (specifically the nuclei of the cells) on the slide.A second antibody, commercially tagged with a fluorescent dye, is added to the mix of patient's serum and commercially prepared cells on the slide. The second (fluorescent) antibody attaches to the serum antibodies and cells which have bound together. When viewed under an ultraviolet microscope, antinuclear antibodies appear as fluorescent cells.If fluorescent cells are observed, the ANA (antinuclear antibody) test is considered positive.If fluorescent cells are not observed, the ANA (antinuclear antibody) test is considered negative.I don't know about you, but obviously you can either be POSITIVE, or you can be NEGATIVE. I wonder what your doctor meant by FALSE POSITIVE? They could be talking about your titer.How is the ANA titer determined?A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported. For example, if a titer performed for a positive ANA test is:1:10 positive1:20 positive1:40 positive1:80 positive1:160 positive1:320 negative Three parts of an ANA reportAn ANA report has three parts:positive or negativeif positive, a titer is determined and reportedthe pattern of flourescence is reportedWhat is your pattern type? Lets move on.What is the significance of the ANA pattern?ANA titers and patterns can vary between laboratory testing sites, perhaps because of variation in methodology used. These are the commonly recognized patterns:Homogeneous - total nuclear fluorescence due to antibody directed against nucleoprotein. Common in SLE (lupus).Peripheral - fluorescence occurs at edges of nucleus in a shaggy appearance. Anti-DNA antibodies cause this pattern. Also common in SLE (lupus).Speckled - results from antibody directed against different nuclear antigens.Nucleolar - results from antibody directed against a specific RNA configuration of the nucleolus or antibody specific for proteins necessary for maturation of nucleolar RNA. Seen in patients with systemic sclerosis.What does a positive ANA result mean?ANAs are found in patients who have various autoimmune diseases, but not only autoimmune diseases. ANAs can be found also in patients with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease.The ANA results are just one factor in diagnosing, and must be considered together with the patient's clinical symptoms and other diagnostic tests.What is the incidence of ANA in various diseases or conditions?Statistically speaking the incidence of positive ANA (in percent) per conditon is:Systemic lupus erythematosus (lupus or SLE) - over 95%Progressive systemic sclerosis (scleroderma) - 60-90%Rheumatoid Arthritis - 25-30%Sjogren's syndrome - 40-70%Felty's syndrome - 100%Juvenile arthritis - 15-30%Since you have a positive ANA, you should know about the subsets.Subsets of the ANA (antinuclear antibody) test are sometimes used to determine the specific autoimmune disease. For this purpose, a doctor may order the following antibody tests:anti-dsDNAanti-SmSjogren's sydrome antigens(SSA, SSB)Scl-70 antibodiesanti-centromereanti-histoneanti-RNIf you would, tell us your titer and pattern please =)
    keanhe 86 Replies
    • October 23, 2010
    • 07:01 AM
    • 0
    Flag this Response
  • By the way, I just read about your ANA.Types of AntibodiesIn order to understand the ANA (antinuclear antibody) test, it is first important to understand different types of antibodies.Antibodies are proteins, produced by white blood cells, which normally circulate in the blood to defend against foreign invaders such as bacteria, viruses, and toxins.Autoantibodies, instead of acting against foreign invaders as normal antibodies do, attack the body's own cells.Antinuclear antibodies are a unique group of autoantibodies that have the ability to attack structures in the nucleus of cells. The nucleus of a cell contains DNA.ANA (Antinuclear Antibody) TestSerum from the patient's blood specimen is added to microscope slides which have commerically prepared cells on the slide surface. If the patient's serum contains antinuclear antibodies (ANA), they bind to the cells (specifically the nuclei of the cells) on the slide.A second antibody, commercially tagged with a fluorescent dye, is added to the mix of patient's serum and commercially prepared cells on the slide. The second (fluorescent) antibody attaches to the serum antibodies and cells which have bound together. When viewed under an ultraviolet microscope, antinuclear antibodies appear as fluorescent cells.If fluorescent cells are observed, the ANA (antinuclear antibody) test is considered positive.If fluorescent cells are not observed, the ANA (antinuclear antibody) test is considered negative.I don't know about you, but obviously you can either be POSITIVE, or you can be NEGATIVE. I wonder what your doctor meant by FALSE POSITIVE? They could be talking about your titer.How is the ANA titer determined?A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported. For example, if a titer performed for a positive ANA test is:1:10 positive1:20 positive1:40 positive1:80 positive1:160 positive1:320 negative Three parts of an ANA reportAn ANA report has three parts:positive or negativeif positive, a titer is determined and reportedthe pattern of flourescence is reportedWhat is your pattern type? Lets move on.What is the significance of the ANA pattern?ANA titers and patterns can vary between laboratory testing sites, perhaps because of variation in methodology used. These are the commonly recognized patterns:Homogeneous - total nuclear fluorescence due to antibody directed against nucleoprotein. Common in SLE (lupus).Peripheral - fluorescence occurs at edges of nucleus in a shaggy appearance. Anti-DNA antibodies cause this pattern. Also common in SLE (lupus).Speckled - results from antibody directed against different nuclear antigens.Nucleolar - results from antibody directed against a specific RNA configuration of the nucleolus or antibody specific for proteins necessary for maturation of nucleolar RNA. Seen in patients with systemic sclerosis.What does a positive ANA result mean?ANAs are found in patients who have various autoimmune diseases, but not only autoimmune diseases. ANAs can be found also in patients with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease.The ANA results are just one factor in diagnosing, and must be considered together with the patient's clinical symptoms and other diagnostic tests.What is the incidence of ANA in various diseases or conditions?Statistically speaking the incidence of positive ANA (in percent) per conditon is:Systemic lupus erythematosus (lupus or SLE) - over 95%Progressive systemic sclerosis (scleroderma) - 60-90%Rheumatoid Arthritis - 25-30%Sjogren's syndrome - 40-70%Felty's syndrome - 100%Juvenile arthritis - 15-30%Since you have a positive ANA, you should know about the subsets.Subsets of the ANA (antinuclear antibody) test are sometimes used to determine the specific autoimmune disease. For this purpose, a doctor may order the following antibody tests:anti-dsDNAanti-SmSjogren's sydrome antigens(SSA, SSB)Scl-70 antibodiesanti-centromereanti-histoneanti-RNIf you would, tell us your titer and pattern please =)My test was 1:40. The Dr said it was too low. He didn't tell me what pattern it was, only that it was a false positive. I read the literature pertaining to the ANA also, but the Dr. was more annoyed than I like to say that I was questioning his opinion. Needless to say, no follow-up was done. This is one of the many reasons I am so frustrated! Finally I get a "positive" test result and think "Finally! We're getting somewhere" and then the Dr dismisses it and offers me anti-depressants because I want further evaluation. I think his words were "You just want something to be wrong, so of course you feel unwell!". Most doctors seem to think the anemia is the root problem, but since the new symptoms are starting to appear more frequently, and my iron very rarely stays stabilized for more than 3 months (as compared to 2-3 years before), I really think that there is an underlying condition that compounds the anemia. But I am not a Dr.I am trying to get a second opinion (from another Rheumatologist), but insurance company is not too happy I want to go away from their treatment facility.
    Anonymous 42789 Replies
    • October 23, 2010
    • 03:35 PM
    • 0
    Flag this Response
  • My test was 1:40. The Dr said it was too low. He didn't tell me what pattern it was, only that it was a false positive. I read the literature pertaining to the ANA also, but the Dr. was more annoyed than I like to say that I was questioning his opinion. Needless to say, no follow-up was done. This is one of the many reasons I am so frustrated! Finally I get a "positive" test result and think "Finally! We're getting somewhere" and then the Dr dismisses it and offers me anti-depressants because I want further evaluation. I think his words were "You just want something to be wrong, so of course you feel unwell!". Most doctors seem to think the anemia is the root problem, but since the new symptoms are starting to appear more frequently, and my iron very rarely stays stabilized for more than 3 months (as compared to 2-3 years before), I really think that there is an underlying condition that compounds the anemia. But I am not a Dr. I am trying to get a second opinion (from another Rheumatologist), but insurance company is not too happy I want to go away from their treatment facility. Have you ever entertained the idea of systemic yeast infection? I have been sick for years and it came to a head when I had a colonoscopy and in the hospital for negative kidney stones. I was given antibiotics that we think spread yeast infection into my bowels. I have been really sick since this episode for 20 months and being treated with a candida diet. I am better, but still sick. At least we are going in the right direction. Find a site that describes candida or yeast infection. Main stream medicine is not to crazy about this concept, but I have been to over 30 main stream doctors and they think it is in my head, or tell me they can't help me. I will opt for the chiro. that described me to a T and drew out my history on a body map. It was amazing. Most people with systemic yeast infection have many symptoms that don't fit any real pattern. I have had all the tests, been to Mayo, seen multiple specialists and this guy has made more sense than anyone. I am fatigued, fuzzy thinking, bowel pain, heart pounds, hormonal fluctuations, depression, weight gain, spells of crying, body tremors, weakness, etc. I could go on forever. MIght want to read up on it.
    cozynana 39 Replies
    • October 25, 2010
    • 11:51 PM
    • 0
    Flag this Response
  • My test was 1:40. The Dr said it was too low. He didn't tell me what pattern it was, only that it was a false positive. I read the literature pertaining to the ANA also, but the Dr. was more annoyed than I like to say that I was questioning his opinion. Needless to say, no follow-up was done. This is one of the many reasons I am so frustrated! Finally I get a "positive" test result and think "Finally! We're getting somewhere" and then the Dr dismisses it and offers me anti-depressants because I want further evaluation. I think his words were "You just want something to be wrong, so of course you feel unwell!". Most doctors seem to think the anemia is the root problem, but since the new symptoms are starting to appear more frequently, and my iron very rarely stays stabilized for more than 3 months (as compared to 2-3 years before), I really think that there is an underlying condition that compounds the anemia. But I am not a Dr.I am trying to get a second opinion (from another Rheumatologist), but insurance company is not too happy I want to go away from their treatment facility.Ok, your titer is 1:40. I have a few family members with lupus, and I believe they were diagnosed with at least 1:1260. Maybe you should have it re-tested, just to see if there is any signs of an increase.I am concerned with these leg cramps you are experiencing at night and the onset of peripheral neuropathy of your legs. Those, along with your other symptoms since 2009, suggest that you might be experiencing chronic kidney problems. Do you have any problems with alcohol consumption? How about flank pain?From another angle, we can look at the peripheral neuropathy and nocturnal leg cramps as possible effects of a synergistic emergence of pernicious anemia, which is common. Maybe that's why the tremors, headache, and fatigue came into play around 2009. Your body obviously has problems with the absorption of minerals.How do your CBC's look? What exactly is coming up abnormal in the report?Also, it would be helpful if you were to post additional labs pertaining to your current symptoms, such as rheumatoid factor, ESR, CRP, Uric acid, and urinalysis results.
    keanhe 86 Replies
    • October 26, 2010
    • 04:00 AM
    • 0
    Flag this Response
  • Ok, your titer is 1:40. I have a few family members with lupus, and I believe they were diagnosed with at least 1:1260. Maybe you should have it re-tested, just to see if there is any signs of an increase.I am concerned with these leg cramps you are experiencing at night and the onset of peripheral neuropathy of your legs. Those, along with your other symptoms since 2009, suggest that you might be experiencing chronic kidney problems. Do you have any problems with alcohol consumption? How about flank pain?From another angle, we can look at the peripheral neuropathy and nocturnal leg cramps as possible effects of a synergistic emergence of pernicious anemia, which is common. Maybe that's why the tremors, headache, and fatigue came into play around 2009. Your body obviously has problems with the absorption of minerals.How do your CBC's look? What exactly is coming up abnormal in the report?Also, it would be helpful if you were to post additional labs pertaining to your current symptoms, such as rheumatoid factor, ESR, CRP, Uric acid, and urinalysis results.Sorry it has taken a while to get back. I was hospitalized because my iron levels suddenly dropped...ferritin level at 4ng/mL (normal 48-150). To answer your questions: I do not drink (just my personal choice); I have had B12 shots regularly (every 1-2 weeks), with no effect on either iron levels or energy level. My CBC usually shows low on all things. My white cell count is on the low side of normal, my red cell count is low (which is odd for Iron deficiency anemia) and the other levels are just on the low side of normal. HGB is low, of course, and platelets are low side of normal. My biggest hindrance is my insurance. They will not allow my GP to perform the tests you mention above, and the rheumotologist was unwilling to perform them. I am trying to get into a different rheumotologist, but right now it takes a back seat to the hematologist..I have to get the iron stabilized, I am still at critical levels :( I am really worried because my ferritin levels dropped so rapidly! I am wondering if there is a bone marrow disorder...hopefully getting a biopsy done this week. I have a horrible feeling that they will finally figure out what is wrong with me at my autopsy...My husband and children are scared, and I am terrified right now.
    Anonymous 42789 Replies
    • October 26, 2010
    • 05:41 PM
    • 0
    Flag this Response
  • Hello all - I have been sick since I was 12 years old. I was hospitalized for anemia for well over a month then, and it has plagued me since. Below is a run-down of the symptoms and when they started. I have been to cardiologists, neurologists, gastroenterologist, hematologists, oncologists, rheumatologists and dozens of gp's. My husband is active duty military, so we start over every six months! 1994-2010 - Anemia. IV iron monthly for about six months out of the year.2006 and 2010 - Unexplained losses of conciousness. Followed by weeks of "fog" where I have no memory2006, 2008, 2010 - sever lower left quadrant pain. Suspected kidney stones or ovarian cysts, but no confirmation through CAT scans or ultrasounds. The pain subsides after about two weeks.2009-2010 - Constant headache. About a 2 or 3 on a 1-10 scale daily with days of 11 or higher. Topomax was given, but no relief.2009-2010 - Heart palpitations (flutters). These are occasional, but worrisome. All cardiac tests came back normal.2009-2010 - Debilitating fatigue. I am not able to even walk to our mailbox, or cook diner most nights. Sometimes I am too weak to feed myself. 2009-2010 - Feels like my insides are shaking, and my hands shake uncontrollably.09/2010 - feeling of my legs falling asleep. Burning, tingling discomfort that comes and goes.10/2010 - Sever leg cramps that wake me in the middle of the night screaming.I have had a positive ANA (09/2010) but the titer was too low to diagnose Lupus or other diseases.I have had numerous tests and my heart and brain are both functioning normally.Does anyone have similar symptoms? If so, can you tell me where to go from here? I am currently trying to get a bone marrow aspiration and biopsy to rule out issues on that end...or finally diagnose the type of anemia I have. But, military healthcare is sometimes a headache in itself!Thank you!This is a long shot, but being a former military wife I am suspicious about the use of Chlordane that was banned in Base Housing in 1980. The houses I lived in were still in use as of 2008, and suddenly the Base cleared them out; even the roads. The Base also used liberal pesticides, spraying at night so we weren't even aware if we had a window open. They banned it because of research that showed it could cause neurological damage to their pilots. Nevermind the families that also shared that housing. Just a thought and I bet the Base Medical doctors would downplay it. I had an "attack" of thyroid disease 3 yrs after moving off Base and have had weird muscle pain, flu symptoms ever since 1983.
    Anonymous 42789 Replies
    • October 26, 2010
    • 05:50 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Sorry it has taken a while to get back. I was hospitalized because my iron levels suddenly dropped...ferritin level at 4ng/mL (normal 48-150). To answer your questions: I do not drink (just my personal choice); I have had B12 shots regularly (every 1-2 weeks), with no effect on either iron levels or energy level. My CBC usually shows low on all things. My white cell count is on the low side of normal, my red cell count is low (which is odd for Iron deficiency anemia) and the other levels are just on the low side of normal. HGB is low, of course, and platelets are low side of normal. My biggest hindrance is my insurance. They will not allow my GP to perform the tests you mention above, and the rheumotologist was unwilling to perform them. I am trying to get into a different rheumotologist, but right now it takes a back seat to the hematologist..I have to get the iron stabilized, I am still at critical levels :( I am really worried because my ferritin levels dropped so rapidly! I am wondering if there is a bone marrow disorder...hopefully getting a biopsy done this week. I have a horrible feeling that they will finally figure out what is wrong with me at my autopsy...My husband and children are scared, and I am terrified right now.Ok, work with me here.Iron deficiency anemia is the only type of anemia that consists of decreased ferritin and decreased iron, of course. But WHY are you experiencing a worsening of your IDA, in addition to the new symptoms you are experiencing? You don't have GI bleeding, you are not lacking iron in your diet, your not pregnant, and you have been scoped repeatedly and have not found any kind of GI disorder. We have to look at this from a different perspective. I'm sticking to my original thought of a thyroid disease. Here's why. Hypothyroidism can result in a lowered production of hydrochloric acid which in turn leads to the malabsorption of iron. It can also lower your body temperature which causes you to make less red blood cells (Wonder why your red cell count is low?). Additionally, being hypo can result in heavier periods, which causes more iron loss.In turn, having low iron levels decreases deiodinase activity, i.e. it slows down the conversion of T4 to T3.Excessively low Ferritin can make it difficult to continue raising your desiccated thyroid, resulting in hyper symptoms when raising desiccated thyroid.Biologically, insufficient iron levels may be affecting the first two of three steps of thyroid hormone synthesis by reducing the activity of the enzyme “thyroid peroxidase”, which is dependent on iron. Thyroid peroxidaxe brings about the chemical reactions of adding iodine to tyrosine (amino acid), which then produces T4 and T3. Insufficient iron levels, which low ferritin reveals, alters and reduces the conversion of T4 to T3, besides binding T3.Additionally, low iron levels can increase circulating concentrations of TSH (thyroid stimulating hormone).Iron, in addition to iodine, selenium and zinc, are essential for normal thyroid hormone metabolism.Your new symptoms are that of a thyroid disease, and not much else can explain your test results and symptoms. I've looked into multiple types of rare anemias, and I can't really find anything that can explain all your symptoms as well (or even relatively close).You need to see an endocrinologist. Otherwise, you need to convince your physician to do a COMPLETE thyroid workup. That entails the following:TSHFree T3Free T4TRH Infusion testThyroid hormone-binding ratioRadioactive Iodine uptakeThyroid microsomal antibody (TMAb)Thyroglobulin antibodies (TGAbs)Thyroid TSH receptor antibodies (TRAbs)I have completely exhausted every other theory I could come up with. I will pray for your health. Take care.
    keanhe 86 Replies
    • October 27, 2010
    • 05:25 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.