Discussions By Condition: I cannot get a diagnosis.

Anemia, Fatigue, Dizziness, Low HR, Low BP, etc.

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: angeliars
  • April 8, 2009
  • 06:04 PM

I'm not convinced that anyone with any medical knowledge reads these posts, but I'm in a desperate mode ... Plus, I'm just frustrated and need to vent, I suppose.

The Facts:

39 yr old W/F, diagnosed with Anemia (unknown origin) 5 yrs ago. Since that time, my body is in a "failure to thrive" mode. I now have a pacemaker since my heart won't beat fast enough on its own and I have low Blood Pressure. I now have barely enough energy to work, I sleep in the evenings before and after supper and I take at leaset two naps a day on the weekends.

During the last year, my new physician has become super-aggressive in trying to find a reason why I'm anemic. I do not absorb iron orally, so I'm currently on an aggressive iron infusion therapy. But, we don't know if my body is going to retain anything it's receiving ... additional blood work is scheduled for next week. I don't expect a positive outcome.

Previous treatments/tests: Hysterectomy, Bone Marrow extraction, Enodoscopy, Colonoscopy, countless blood tests, urine tests, fecal occult tests, mammogram, and a stress test. Nothing is jumping off the page to my physicians, just the obvious anemia.

Considerations: BioIdentical Hormone treatments (with appropo diagnosis after testing) ...

Any advice from a medical professional or fellow female patient with like symptoms would be great!

Thank you for reading.

Reply Flag this Discussion

11 Replies:

  • Poor you sounds as if you're really going through it. Is is possible or have they considered giving you a blood transfusion of normal red blood cells from a donor?
    maggiemay 68 Replies Flag this Response
  • I received a blood transfusion the summer of '07. It was during that mandatory 24 hr stay that they found my low heart rate (was dropping to the 20's at night) and lead to the pacemaker. I would think that would be the next logical step if this round of treatments is unsuccessful. Of course, I think it's just a bandaid to the problem, still no diagnosis. Thank you for your concern and response. I'm at a loss!
    angeliars 5 Replies Flag this Response
  • This might sound silly, but it can actually be the cause of your problems. Have you been tested for celiac disease?
    Anonymous 42789 Replies Flag this Response
  • Yes, I was tested for Celiac disease (had the blood test and he confirmed the Villi was present on my stomach lining during the endoscopy). I was actually disappointed, b/c I really thought that might be my "disease", plus it's completely curable after a few years of diet change. Very nice observation and suggestion, though. Thank you for replying.
    angeliars 5 Replies Flag this Response
  • P.O.T.S syndrome
    pamelasmc 82 Replies Flag this Response
  • Wow ... haven't heard of that one ... I'm researching now. Although, it doesn't seem to explain the anemia ... that's the clincher and it must be key. Thank you for the suggestion. Researching POTS has lead to other possibilities, too. Autonomic anomolies. Makes sense. Thanks, again.
    angeliars 5 Replies Flag this Response
  • Amazing how much of this seems to cover my symptoms. I ran both the tower and antenna reports ... the area I've lived in the past two years is covered in both (4 mi radius). Interesting. I have researched a few of the EHS links and while it does read like a precaution list from the back of a Tylenol bottle, it's definitely worth looking into ... It seems my vague symptoms are on every disease list, at least partially. So, how did you and your physician choose to treat the EHS? Move to a less dense area? Before living in the city, I lived in the country for 7 years (little to no antennae/tower activity). It is beginning to add up. Thank you for your contribution. I really do appreciate your assistance.
    angeliars 5 Replies Flag this Response
  • This may sound crazy but have you had a genetic test done for hemachromitosis? this disease is the opposite of anemia (you may have way too much iron) ironically some of the basic tests that doctors perform can indicate anemia when the exact opposite is true! The nice thing about hemachromitosis is definite genetic proof if you have it, and easy treatment (flabotomies every few months) basically they just take some of your blood, and possiblly you can even donate that blood. The negative is by the time doctors usually diagnosis it you have permament organ damage.
    Anonymous 42789 Replies Flag this Response
  • Well, that's definitely something to consider. There's been other developments, but none that explain the anemia. My thyroid is now very slight low (usually not even treated at this level), my testosterone is very VERY low and my estrogen is almost non-existent. I am going to research and discuss hemochromitosis. Is this something you have experience with, Wavirox??
    angeliars 5 Replies Flag this Response
  • From 38 to 51 I suffered with severe, unreasonable fatigue, resulting in depression, and barely keeping my job. Ultimately, I found that I had problems with 1) gluten, and 2) annatto. After 4 days off gluten I felt better and some years later I also figured out that ANNATTO (goes by many names) a yellow-orange-red food dye was making me debilitated for about 4 hours after I consumed it, I began putting my life back in order...cleaning my house, taking a well-deserved vacation, and so forth. Doctors are not helpful when its our very food that is hurting us. Not everyone can tolerate wheat and food coloring. I was always a cheddar cheese (orange) lover, Mexican food (orange); I could go on and on. I was poisoning myself and didn't even recognize it. Annatto drained me of 12 years of my life and probably cost me my marriage. Best of luck! --BM 10/20/09I'm not convinced that anyone with any medical knowledge reads these posts, but I'm in a desperate mode ... Plus, I'm just frustrated and need to vent, I suppose. The Facts: 39 yr old W/F, diagnosed with Anemia (unknown origin) 5 yrs ago. Since that time, my body is in a "failure to thrive" mode. I now have a pacemaker since my heart won't beat fast enough on its own and I have low Blood Pressure. I now have barely enough energy to work, I sleep in the evenings before and after supper and I take at leaset two naps a day on the weekends. During the last year, my new physician has become super-aggressive in trying to find a reason why I'm anemic. I do not absorb iron orally, so I'm currently on an aggressive iron infusion therapy. But, we don't know if my body is going to retain anything it's receiving ... additional blood work is scheduled for next week. I don't expect a positive outcome. Previous treatments/tests: Hysterectomy, Bone Marrow extraction, Enodoscopy, Colonoscopy, countless blood tests, urine tests, fecal occult tests, mammogram, and a stress test. Nothing is jumping off the page to my physicians, just the obvious anemia. Considerations: BioIdentical Hormone treatments (with appropo diagnosis after testing) ... Any advice from a medical professional or fellow female patient with like symptoms would be great! Thank you for reading.
    Anonymous 42789 Replies
    • October 21, 2009
    • 06:04 AM
    • 0
    Flag this Response
  • Have you ever been tested for OSA? May explain some of the issues and low O2 sats
    Anonymous 42789 Replies Flag this Response
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