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What causes anemia, heavy periods and LAM lung disease

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Posted on Tue, 26 May 2015
Question: I am grasping at straws and so are my doctors. For a year my health has slowly been on the decline - started with anemia that resulted in iron infusions thought to be caused by heavy periods, then a CT showed emphysema and renal angiomyolipoma. It went from there to a dx of LAM lung disease and no cure. In the meantime I feel sicker and sicker to the point where I sometimes can barely get out of bed to pee much less work, but I still have plenty of healthy tissue in my lungs. I am so short of breath I have trouble walking up one flight of stairs; I feel like I have a never-ending hangover. I get confused, blurry vision, the muscles in my upper thighs and buttocks get very weak upon standing, like a sensation that they are giving out, where I feel if I take one more step I will collapse right on the spot. I have lots of sinus pressure, my ears feel plugged up but I dont have a sinus infection. My kidneys hurt, I ache under my right rib cage near my liver - especially when I wake up - but all functions are normal on CT, and the angiomyolipoma and scattered cysts are very small. I had microscopic blood in my urine with no infection, am again severely anemic (7.1 hemoglobin) after months of stable labs and no changes in my period. My eyes are so dry I have to use drops every 30 mins/1 hr and my mouth gets extremely dry, had an elevated D-Dimer but negative for PE on angiography. Bone marrow biopsy clear, anemia is iron deficiency for sure, negative ANA. However, my RF factor was 414 when the normal range is 0-12. Everything else looks good. Ive now been referred to a cardiologist and rheumatologist and more waiting. In the meantime I am getting sicker and sicker and feel like I am about to die any day. I have no relief because no one knows what's wrong. So I thought maybe a doctor on here might know what's going on.
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Answered by Dr. Naval Mendiratta (2 hours later)
Brief Answer:
?Etiology of all problems

Detailed Answer:
Good evening

Thank you for writing on health care magic

I will do my best to guide you. It is always a bit difficult especially in difficult cases like yours to come to exact diagnosis without examining, but never the less I will try to guide you to some solution

Let me some up your problems firstly:

1. Anaemia( persisting despite iron transfusions)
2. new onset emphysema without a cause
3 Angiomyolipomas in the kidney
4. Myalgias and fatigue
5. Dry eyes and dry mouth( negative ANA)

Well, to sum up it is unsual for you to develop EMphysema at your age especially if you are non smoker. SO it brings us to the rare causes: I would like you to get alpha 1 antitrysin levels checked once. It is a very common cause of emphysema in the young and can explain your dry eyes dry mouth as well.

Secondly for persistent anaemia, I am not sure if you have done the coombs test and reticulocyte count done. If the bone marrow is normal and you are not having too much loss, there is a chance it is getting broken down in the blood. Can you check these 2 for me and let me know?Also i would like you to get ENA profile done to check for Anti Ro and Anti LA antibody. Dry eyes and anemia, we need to look for Sjogrens Syndrome as well. 40 % can have ANA negative despite having symptoms.

Thirdly, all the fatigue , myalgia and difficulty in breathing look due to lack of oxygenation in your muscles due to Emphysema. As mentioned, you havnt written any details on the treatment modality. But whatever the cause is, you will need some dose of steroids to inhibit the inflammation and relax the airways in emphysema which will improve your oxygenation and lower the fatigue. I understand if the doctors havnt started yet as they dont have a clear cut diagnosis, but you can consult your GP once regarding it as you will experience benefit from it.

To sum up: We should get ENA profile, REticulocyte count, Coombs test and Alpha 1 antitrypsin levels done once to know where we are heading. Also a 2 D echo to look for your heart pressures. For treatment, little dose of steroids

Hope the information is useful

Do let me know for more queries. Would be happy to answer them

Regards
Dr Naval
Above answer was peer-reviewed by : Dr. Yogesh D
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Answered by
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Dr. Naval Mendiratta

Rheumatologist

Practicing since :2007

Answered : 754 Questions

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What causes anemia, heavy periods and LAM lung disease

Brief Answer: ?Etiology of all problems Detailed Answer: Good evening Thank you for writing on health care magic I will do my best to guide you. It is always a bit difficult especially in difficult cases like yours to come to exact diagnosis without examining, but never the less I will try to guide you to some solution Let me some up your problems firstly: 1. Anaemia( persisting despite iron transfusions) 2. new onset emphysema without a cause 3 Angiomyolipomas in the kidney 4. Myalgias and fatigue 5. Dry eyes and dry mouth( negative ANA) Well, to sum up it is unsual for you to develop EMphysema at your age especially if you are non smoker. SO it brings us to the rare causes: I would like you to get alpha 1 antitrysin levels checked once. It is a very common cause of emphysema in the young and can explain your dry eyes dry mouth as well. Secondly for persistent anaemia, I am not sure if you have done the coombs test and reticulocyte count done. If the bone marrow is normal and you are not having too much loss, there is a chance it is getting broken down in the blood. Can you check these 2 for me and let me know?Also i would like you to get ENA profile done to check for Anti Ro and Anti LA antibody. Dry eyes and anemia, we need to look for Sjogrens Syndrome as well. 40 % can have ANA negative despite having symptoms. Thirdly, all the fatigue , myalgia and difficulty in breathing look due to lack of oxygenation in your muscles due to Emphysema. As mentioned, you havnt written any details on the treatment modality. But whatever the cause is, you will need some dose of steroids to inhibit the inflammation and relax the airways in emphysema which will improve your oxygenation and lower the fatigue. I understand if the doctors havnt started yet as they dont have a clear cut diagnosis, but you can consult your GP once regarding it as you will experience benefit from it. To sum up: We should get ENA profile, REticulocyte count, Coombs test and Alpha 1 antitrypsin levels done once to know where we are heading. Also a 2 D echo to look for your heart pressures. For treatment, little dose of steroids Hope the information is useful Do let me know for more queries. Would be happy to answer them Regards Dr Naval