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blood work ... need a better doctor ... help? (Read 2296 times)
Sasha
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blood work ... need a better doctor ... help?
11/13/13 at 09:02:42
 
My 24 hr urine test showed low prostaglandin levels (lower than levels) ... my platelets are low (100-125 level) and clotting time is high (takes longer than normal to clot).  My only diagnosis is anti-ige receptor AB (and hypothyroidism & asthma).  I was told that none of these should cause me to have severe reactions, swelling and hives.  Dr. is pretty much ruling out mastocytosis but still not completely sure.  The Hematologist is guessing that I have ITP because my levels have been low for several years (only coming back up once last summer).  For years wondered if I have aspirin sensitivity/triad but I do a low salicylate diet and low histamine diet.  I need a dr. who can put the pieces of this puzzle together because I have no idea what is going on but it is so scary and Ive lost too much weight.  I want to be able to eat better, too.
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sarahkay1111
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Re: blood work ... need a better doctor ... help?
Reply #1 - 11/13/13 at 14:21:01
 
Hi Sasha,

I don't know if this will help you at all, but I just wanted to let you know I am in the same boat with you.  I have been going to the Mayo Clinic for a year.  Diagnosed with Eosinophilic Esophagitis, and mast cell hyperreactivity vs. mast cell disease by the GI doctor.  I have seen one mast cell specialist there who was not a big help, and I am now seeing the other specialist.  I  just saw him on Monday and he said he is going to play detective to figure out what it is.  He ordered some blood work for histamine intolerance due to my issues with food, and he is going to work with me on how to manage my reactions once he figures out what it is.  I have had to be sooooo persistent in making sure I get to the right person, so my only advice is to keep going until you find someone you connect with who you think can help you.  I just had a reaction a little over a week ago and have lost 7 pounds already.  I can't eat many kinds of foods, so it gets really trying, and then it's scary to keep trying new stuff.  I hope you get to feeling better and get some help.  Do smells bother you too?   ---Sarah
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Starflower
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Re: blood work ... need a better doctor ... help?
Reply #2 - 11/14/13 at 00:32:48
 
Hi Sasha,

I also have anti-IgE receptor antibodies and Hashimoto's... and I bleed easily (petechiae, bruises, nosebleeds, abnormal uterine bleeding) even though two hematologists couldn't find any explanation for it.  My von Willibrand's factor is on the "low side of normal" and my platelets are never very high (although I've heard/read that it's not a major concern until you dip below 50,000).  I have to be careful about supplements that are blood thinners... garlic, turmeric, fish oil, etc...  I recently had some genetic testing that said I would have "increased sensitivity" to Warfarin, which is another blood thinner.  I thought, "Tell me something I don't know." Cheesy

Anyway... I've had "idiopathic anaphylaxis" and allergic reactions to quite a variety of things: latex, silicone spray, exercise, overheating, air travel, adhesives, fragrances in candles and detergent, etc... The only thing that shows up on RAST is a shrimp allergy, which is one of the least bothersome to me!  My baseline tryptase and bone marrow are "normal," so I fall into the MCAD category.

What treatments (if anything) have you tried so far?  Antihistamines keep me out of the ER, but cromolyn sodium and Singular gave me a pretty normal life back.  I also take vitamin K, which is the opposite of a blood thinner... it definitely helps.  People can suggest doctors if you want to share your location.

Heather
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Sasha
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Re: blood work ... need a better doctor ... help?
Reply #3 - 11/14/13 at 01:35:58
 
Thank you both for your replies.  I'm on the East Coast (southern US) ... am willing to travel if there is an awesome dr.  Diagnosed Idiopathic An., too and Autoimmune Uticaria but it doesn't explain the low platelets.  I started having fixed "drug" eruptions for the past 3 months (except there is no new drug it happens after eating plain pasta noodles).  I can eat other wheat, muffins/waffles but not pasta now?  Hives on the same arm same spot.  Ugh.  I am thinking of trying singulair.  I only take inhaled steroid for asthma and trying claritin.  I'm pretty sure allegra helps more but the red dye bother me.  I take levothyroxine.  I have stuck to a strict diet.  The only relief I've found is during pregnancy my symptoms are muted and not too bad if at all.  I also noticed a worsening of problems during or right before my period.  They think hormones might play a role in it, too.  ETA: Can fortification with niacin or ferrous sulfate cause hives?  Most of the wheat I eat is organic and not fortified or fortified with a different type of vitamin my pasta is regular wheat and fortified with ferrous sulfate (iron) and a bunch of B vitamins.  Within 3 hours of eating it I get huge hives on my upper right arm.  No other place ... totally different from normal reactions which are immediate.
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