Mastocytosis - new question

KarieARadtke
  • By KarieARadtke · January 16, 2013 at 2:52 pm · 5 replies
  • In My disease has no treatment
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Dr recently changed me from cuteaneous to systemic. Here is a question and is it related to masto?

My platelet count is slightly elevated but my iron is very low, not much in the bone marrow. They talked about an iron iv, but am going to start with just an iron supplement for now. The nurse said I'm not sure how your body is making red blood cells with low iron.

So is this masto related or some other condition or sign of a condition?

Thanks for any input!
Karie

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5 replies   

pendelphin

Hi I have systemic masto, all I can tell you is, that im anemic, also low in folic acid and vit D, and calcium, I have to take supplements for these, so I think it does mess with your blood count, for some reason, dont know if this helps, best wishers, p x

KarieARadtke

Thank you for the input!

catpurr

Karie,
So sorry you are going through this. So many of us here can relate,and are here to offer support when you need it! You asked a question; Cutaneous is the skin(I guess you know that) and Systemic means anywhere else.Mine is confined to the GI tract.Alot of us have low blood and are anemic at times as well as having low vit.d levels. It is very complicated and chaotic. There is no simple way to explain it. It does help so much to be able to talk to others who struggle with the same things as well. I would encourage you to talk to Josie,if you havent already. she is sort of the "Guru' here. She actually is in The UK and has a website that explains things so well and in Laymans terms. www.iamast.com...I hope this helps.
Healthy Blessings to You!!!
Genia : ))

cassia633
  • By cassia633
  • Reply 3718805 · In reply to 3713516 by pendelphin
  • January 18, 2013 at 9:54 pm
  • Report post

Hello px..........I also have sys. masto. diagnosis , since 2007. I see that you found out the hard way how that nasty masto. caused ur osteoporosis! I had hyterectomy/overectomy way back when I was 29; took all the hormone replacement therapy &calcium, ate all the Vit D&calcium rich foods, ect. so as NOT to have osteoporosis!.....yet, I found out about 18months ago that I have it big time!
The positive part is that I saw endocriologist a year ago...got me taking Atelvia plus vit. D&more calcium. My blood tests last week were excellent vit D, calcium levels! yea. I am so very sorry that you had to suffer a broken back in this process...trusting that you are now a ferocious advocate...esp. for the newbee sys.mastos, to have their levels tested early on & monitored.
So glad you continue to reach out to others. You have had a rough go of it.
With Thanks,
Cassia

mqk02000

Hi, I have had masto since 1989 diagnosed and was sick before. I have high ferritin levels which could also be inflammation but it also could be high iron levels. Hope you all feel better soon Q

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