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  #1  
Old Fri Feb 17, 2012, 07:51 PM
Tohobo Tohobo is offline
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Join Date: Feb 2011
Location: Canada
Posts: 22
Confused...need some advice

Hi all, thanks in advance.

To start off, I am a 25 year old Caucasian male.

My current health issues are Celiac Disease (diagnosed Nov 2009 by biopsy/anti-ttg positive blood tests), Addison's Disease (diagnosed in May 2011 by low cortisol and high ACTH), secondary hypogonadism (diagnosed by low free testosterone and low pituitary hormones LH/FSH).

Throughout the last couple years, my RBC/HB/HCT have been flip flopping from mildly low to borderline low. RBC range has been 3.5-4.5, HB range has been 119-141, HCT range has been 34-41. Basically it just seems to jump back and forth, never going higher than the bottom of normal. My absolute retic count throughout this time has ranged from severely low to mildly low. It is usually between 1-15 when normal is >25. It seems like every other test my levels bounce back and forth. Lately I've noticed my WBC starting to slide lower. It has always been between 5-7 and recently it has dropped into the 3's. I had been referred to a hematologist due to my bouncing counts and low b12/ferritin/folate.

Here is the blood work ran by the hematology department last week, it was taken one month after I was treated with B12 shots bi-weekly and oral ferritin/folate. I had a B12 shot 5 days before this test was taken. My B12 before treatment was 72 and my ferritin was 19. I have highlighted low results with red and borderline with orange.

The hematologist seems to be blowing me off, but my Gastro/Endo both believe it is something that needs to be investigated. My gasto mentioned a bone marrow biopsy, but the hematologist said not a chance. I am just worried as my health has not been good over the last couple years. Any advice or past experiences are appreciated. I understand nobody here is a doctor and others have much more severe issues, but I didn't know where else to ask. Thanks again to everyone!!

WBC: 3.1 (4-11)
ABS Neutro: 1.77 (2.0-6.5)
ABS Lymph: 0.79 (1.0 - 3.2)

ABS Mono: 0.32 (0.2 - 0.8)
ABS Eosin: 0.2 (0.04-0.40)
ABS Baso: 0.03 (0.00-0.10)

RBC: 4.1 (4.5-5.7)
HGB: 127 (140-170)
HCT: 36 (40-49)

MCV: 88 (82-97)
MCH: 31 (27-32)
MCHC: 352 (320-360)
RDW: 12.3 (11-15)
MPV: 8.3 (7-11)

PLT: 156 (150-400)


B12: 183 (110-800)
Homocysteine: 14.2 (3-15)
RBC Folate: 491 (normal >650)

Ferritin: 26 (30-280)
Total IRON: 11 (10-32)
TIBC: 50 (43-73)
Saturation %: 22 (20-50)


ESR: 1 (0-15)
CRP: <0.2 (0.0-5.0)

ALP: 41 (35-125)
AST: 30 (7-40)
ALT: 31 (10-45)
GGT: 9 (8-80)
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  #2  
Old Sat Feb 18, 2012, 12:39 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
What are you doing now to get those nutrient/vitamin numbers up? Your B12 is still way too low. It needs to be above 500. It appears you are still not getting everything out of your food as a result of the celiac.

B12, folate, B6, iron, zinc and copper are the major hitters. Zinc is also good for testosterone production. Copper, zinc and iron need to be in balance. Too much of or too little of one will through off the others.

Are you on hormone replacement? Testosterone can help red cell production.

Weekly b12 shots is not usually enough to restore your B12. A more aggressive approach should be looked into. You can supplement orally with the methyl form of B12 also.
__________________
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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #3  
Old Sun Feb 19, 2012, 02:53 AM
Tohobo Tohobo is offline
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Join Date: Feb 2011
Location: Canada
Posts: 22
Thanks for the response!

Currently I take,

For B12/Folate
--------
--> Injection B12 1000 mcg bi-weekly
--> Oral B12 1000mg 2x daily
--> Oral B100 Complex multivitamin 1x daily
--> Oral sodium folate 1000mg 1x daily

For Ferritin
----------
--> Oral Palafer 1x daily

Testosterone
--------------
--> Androgel 1% 5g 1xdaily

I also take a vitamin D/calcium supplement and a multivitamin. I have been on the normal vitamin schedule for years and the androgel was introduced about 6 months ago when I was diagnosed with low Testosterone and the B12 injections/Palafer were added when my counts dropped late last year.

My Gastro told me my fatigue and other symptoms can't be from the B12/Ferritin/Folate because my levels are now back to normal. I told him that they don't appear ideal, especially for a young male who is on treatment for each. He just said it doesn't matter if B12 is 150 or 800, as long as it is normal. It is frustrating, but no doctor will do anything but treat it. I would like some more answers! Anyways, thanks for the help...I appreciate it.
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  #4  
Old Sun Feb 19, 2012, 06:38 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi,

I notice you have two endocrine problems. Have you been tested for pituitary disease?

Also, I assume you take prednisone and or Fludrocortisone for the Addisons. Maybe these can decrease your counts.

Just a thought, but I suppose you would see your Endocrinologist regularly.

Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #5  
Old Sun Feb 19, 2012, 02:08 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
I need to think about this a bit more but in the meantime, spend some time reading these posts on mis-diagnosed MDS as a result of low B12. You'll see they contradict what your doctor's approach is regarding b12 levels. In the study, they did an aggressive loading approach with b12. 1mg injection, daily for 7 days.

http://forums.marrowforums.org/showt...&highlight=b12

http://forums.marrowforums.org/showt...&highlight=b12

There's a lot going on as a result of the celiacs. It takes a long time to restore and heal. And even then, you may not be able to reverse everything.

I will think through some things and post my thoughts later in hopes of maybe giving you some ideas to pursue.

This is difficult but I think you will find your path to healing.
__________________
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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #6  
Old Sun Feb 19, 2012, 04:07 PM
mscrzy1 mscrzy1 is offline
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Join Date: Jan 2011
Location: California
Posts: 103
I totally agree with Marlene.

Even though your counts aren't at a level that should cause significant fatigue, fatigue is common with autoimmune diseases of which you have at least 2 that your body is dealing with. Since they do seem to come in clusters, have they tested you for any more?
__________________
Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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