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  #1  
Old Sat Oct 20, 2012, 02:03 PM
TASHMAC TASHMAC is offline
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JUST diagnosed with Aplastic Anemia

Hi, I have just been diagnosed (yesterday) with Aplastic Anemia and have the following questions:

a) I have been told that the pathologist reading my bone marrow biopsy and aspiration did not consider either of the samples to be good enough to sign off that the bone marrow was clearly considered Aplastic

b) can nutrient deficiency lead to aplastic anemia and if so can this not be easily fixed with improved nutrition.

If you have the time to read my story below that would be great as I am looking for any insight people may have.

I am a mum of 2 beautiful loving girls aged 18 months and 3, I have a very loving husband and am nearly 36 years old and until about 2 weeks thought I was just tired and run down due to working full time (with a very stressful job), having 2 little girls aged 3 and under, lack of sleep (as both my girls have been terrible sleepers - until about a month ago I was lucky to get 3 hours sleep in a row, most nights I would get between 5 and 6 hours sleep but not consecutive) and not eating properly as never seem to have the time.

I decided to go to the doctor on 3 October as for about 2 months I had noticed that I was bruising more easily, had developed some skin conditions (dandruff, a crack on my lip that would not heal), had a persistent sore throat and a runny noise. My GP took one look at me and said I was very run down and decided to do blood tests. I don't think she was expecting anything to serious to come back. She told me to start taking a multivitamin and to make more effort to eat better. On the 11th of October my blood results were back and my WBC, RBC and PLTs were all low. My PLTs were at 58 and my WBC and RBC were around 3.5. My folate level was also low about 5.2. But my B12 level was in the normal range (although the low side of normal). So she said lets run the tests again. She ran the tests again and this time my RBC and WBC were both down a little further but my PLTs were up to 63 so she felt that that was a positive sign. She decided to give me a B12 shot and told me to come back on Saturday for some more tests. On Saturday they ran my blood again and this time all levels had fallen again and PLTs were at 48. They decided to admit me to hospital and to start me on prednisone. After 3 doses of prednisone they checked my blood and my PLTs had fallen to 40 but my WBC had increase to 5.5 and my hemoglobin had fallen a bit.

They completed a pelvic and abdominal ultrasound and all organs appeared normal. They under took a CT scan of my brain and normal.

They decided that it was time to do a bone marrow biopsy and aspiration. On Tuesday they did the bone marrow aspiration and biopsy. On Wednesday my PLTs had dropped to 29 and WBC and RBC were both low 3's.

On Thursday my PLTs were up to 34 and they decided no need for a blood transfusion. My RBC was 2.72, WBC 3.1, hemaglobin 9.9 and HCT 27.2%. Neut% 27.1 and LYM% 69.2.

On Friday my WBC was 3.0 my RBC 2.75, my PLTs 31, hemaglobin 10 and LYM%82. They considered my blood stable but based on all my results, symptoms and bone marrow that I have moderate aplastic anemia.

I started Cyclosporine 100mg twice a day Friday evening.

They have ruled out HIV, Lupus, parvovirus, epstein-barr (although I have had at some stage of my life). They are checking for dengue fever now.

I have also lost weight not a huge amount but a reasonable amount in the probably 10 pounds in 2 months. I am by no means skinny I am about 5'9 and weigh 139 pounds. About a US size 6.

My muscles feel sore and at times it feels like my organs are getting caught on my bones.... hard to explain.

My doctor has not really given me much information. My friends have all been researching like crazy and I feel like all I read is negative and I am terrified. I really want someone to tell me that if I start taking better care of myself that this will all go away. My girls need me.

Last edited by TASHMAC : Sat Oct 20, 2012 at 02:31 PM. Reason: more information
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  #2  
Old Sat Oct 20, 2012, 02:19 PM
Marlene Marlene is offline
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If your doctor has not already done so, get your B12, iron, folate, copper, zinc, b6 and vitamin D checked. Restoring b12, folate, iron and copper can restore blood counts if that is the reason for the anemia. Be sure to get the lab results. If you are supplementing now, it can skew the results.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Sat Oct 20, 2012, 07:44 PM
TASHMAC TASHMAC is offline
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Marlene thank you so much for your reply.

I have been back at the hospital today and all blood results other than LYMPH% and Neut% are improving/stable. WBC now 3.96, RBC 2.72 (no change) hemoglobin 9.9 and PLT 35.

Neut% is now at 13.9% and LYMPH% 81.3%

They now are not so sure it is AA and are looking into lymphoma. Will have a PET Cat Scan early this coming week and a second bone marrow biopsy and aspiration where hopefully they will get better samples.

The other item out there is some virus.

This is such an emotional roller coaster.
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  #4  
Old Sat Oct 20, 2012, 10:39 PM
Neil Cuadra Neil Cuadra is offline
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TASHMAC,

I hope they can determine a cause for your low counts soon, and that it's something simpler to deal with than aplastic anemia. If it's aplastic anemia, let's hope it's the mildest case ever.

There are a number of possible causes of low blood counts, so your doctor has the task of sorting out the clues. I assume that she already considered any medications you are taking and checked for infections. Your low white count has left you more susceptible to infections, and lack of rest didn't help.

Your platelets are definitely too low, explaining the bruising. (Having a 3-year-old running around the house can also explain bruising, of course!) Since you passed your ultrasound you apparently don't have an enlarged spleen, which can cause low platelets in the bloodstream (because they collect in the spleen).

A diagnosis of aplastic anemia matches the symptoms you describe but it is not even the only autoimmune disorder to suspect, so there's still detective work to do. The care you are getting sounds appropriate as your doctor hunts for the cause, or for a confirmation of aplastic anemia.

You asked about your bone marrow biopsy. The reason for the bone marrow biopsy is to find out if there is insufficient production of blood cell precursors in your marrow (consist with aplastic anemia) or if your blood cells are maturing only to be lost after they enter your bloodstream. One reason that a bone marrow biopsy can fail to provide enough information is that it was a poor sample. Aplastic anemia can leave you with fewer blood cells to find, but a poor sample can also be due to bad luck, when the surgeon has trouble getting to the "right spot" to collect cells. If a second biopsy shows a lack of the immature blood cells that should be there, that would be stronger evidence of aplastic anemia.

Nutritional deficiencies can cause some of the symptoms you've experienced, but cannot cause aplastic anemia. Good nutrition is still important, however. Nutrition makes a difference in your overall health, and good overall health helps you fight aplastic anemia or other diseases and conditions.

You've been thrown onto a roller coaster, as have many of us, and the first day is the biggest jolt. With answers and information you'll steady the course. I hope it goes well for you and I suggest that you order this free packet of information about aplastic anemia. If it turns out that you have aplastic anemia, the information in the packet will be indispensable.
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  #5  
Old Tue Oct 23, 2012, 08:20 AM
Marlene Marlene is offline
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Low folate and a low normal B12 would indicate some attention is needed regarding overall nutrition. The lip cracks are indicative of an overall low B vitamin status as well as zinc. The dandruff can also be tied to low zinc as well as candida overgrowth. One b12 shot is not going to correct the B12. B12 serum testing is not accurate in detecting a B12 deficiency. I am an advocate of increasing B12 to a "mid to high normal" especially in the presence of blood or neurological symptoms.

Have you been checked for gluten allergy/celiacs disease? Also, h.pylori bacteria. Both of these can lead to poor absorption of nutrients from your food and can effect blood production.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #6  
Old Mon Mar 26, 2018, 07:29 AM
sunnyfcinla sunnyfcinla is offline
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This is addressed to Marlene

Hi, Marlene: I just read your old post on B12 Vitamins and Aplastic Anemia. I was wondering if we can chat. My child was diagnosed with AA in 2011 at age 5. We underwent a transplant that was not successful. I agree with everything you mentioned. In our case, low Vit D and undetected B12 deficiency seems to be the problem. I am speechless to find out this link when I have seen so many specialists for the last 6 years. I would love to get your feedback if you don't mind. Here is my email sunnyfcinla@gmail.com
fran
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  #7  
Old Tue Mar 27, 2018, 09:09 AM
Marlene Marlene is offline
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Will send some info

I'm so sorry to hear that the transplant didn't take. I cannot image how devestated you must be at this point. I have some basic info that I'll email. Most of which has been shared on various post over the past 15 years on this site. I tried to collect the heavy hitters of things to consider that can help ones body to heal.

I will be out most of today so I may not be able to respond right away.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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