Confused...need some advice

[Tohobo]

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)

[Marlene]

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.

[Tohobo]

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.

[Chirley]

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

[Marlene]

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/showthread.php?t=2330&highlight=b12

http://forums.marrowforums.org/showthread.php?t=2507&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.

[mscrzy1]

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?